A Dysplastic Journey

A New Pain, Doc That Is!

2012-01-26T13:39:00.000-08:00

I started this year off setting new goals and changing things I was unhappy with, etc. My first accomplishment and goal met for the year was weaning off all of my narcotic pain killers. It was not an easy task, the nausea was terrible, but I am definitely glad to no longer have them in my system. I feel more alert, aware, clear and have more energy. I did not realize how much they were effecting my energy, my body, and even my spirit. My dad tells me that "I have the twinkle back in my eyes." Overall, I feel better and am looking into other avenues to handle pain.

Being off the pain meds have not changed my level of pain which means it is my nerves as the source of pain. I saw a new pain doc (Dr. David Ratzman)that specializes in pain medicine, management and anesthesiology. He is also my besties pain doc and is familiar with EDS and highly knowledgeable with CRPS. I had so much paperwork to fill out prior, but the appointment was thorough and everyone was so nice. You could tell he cares about the patients and puts effort into finding what is best for them. We talked about my medical history and he want to look further into CRPS, because the presentation is not as typical. I told him that my surgeon (Millis) says "nothing about me is usual." It is true. Nothing is simple, easy or normal :) I have a lot of the symptoms and presentation of CRPS, but do not get as severe of the color changes, it is still falls within clinical diagnostic standards of symptoms being out of proportion to others. Some people may have severe pain with little to no vasomotor response and in others, there may be little pain with intense vasomotor response.

Symptoms of CRPS include:
-severe, constant burning pain
-edema
-increased/decreased hair or nail growth
-vasomotor instability-vasomotor changes range from cool-pallid, mottled changes from vasoconstriction to warm erythematous changes of vasodilation
-diminished motor function
-muscles spasms
-bone changes

I experience a majority of these symptoms and they started with electrical pain and numbness in my right foot and have developed over the last couple years to include a severe burning pain in my thigh, etc. I have tried everything from high doses of Neurontin, desensitization therapy, sympathetic nerve blocks and regional nerve blocks. I am currently taking Lyrica 200mg BID and Cymbalta 120mg daily to help with the nerve pain and flares. I maxed out Neurontin and it was causing too much stomach sensitivity so switching to Lyrica has been very beneficial. Ratzman believed that I have failed numerous conventional therapies, so we talked about what our game plan would be. We talked about doing a prophylactic sympathetic block prior to surgery in March to help with the nerve issues. He also brought up having a ketamine infusion done throughout the surgery and hospital stay because of the methods I have failed and it can offer longer relief than the sympathetic blocks and even "reboot" the nerves in a sense. He was going to request records from Children's as well as speak with Millis and their anesthesiology department to be able to arrange the treatment. It would be the best option right now. He also wanted me to think about a spinal cord stimulator which is surgically implanted and sends pulses or vibrations to the nerves to block the pain signals from the spinal cord. It would have to wait till after my surgeries are over because it effects imaging. But, because I have failed so many of the treatments and the symptoms keep getting worse it is something I am suppose to think about. Having something in my SPINE freaks me out at the moment, but he just wanted me to know that I still have options left.

I also have started intense physical therapy called Sports Performance by Methodist Sports Medicine. It is personal training with a physical therapist and I have been so sore since, but in a good way. Noah is going to kick my butt every week and help with exercises that I need to do to get stronger. AND, I am doing it with my bestie, Jessica Anderson!

My next goals for the year to accomplish are finding a new job since the lay-off, finish my 2 Incompletes from the Fall semester, continue to get fit and stronger and organize/schedule my March hip surgeries. Although the year has not started off as well as I would have liked, I am improving physically and continuing to push towards my goals and dreams with more drive and energy then I have had in years!!!

Act of Valor

2012-01-16T16:21:00.000-08:00

Act of Valor is a movie coming out next month that stars a group of active-duty Navy SEALs. It is a story of contemporary anti-terrorism inspired by true events. To watch the trailers go to: http://actofvalor.com

This movie trailer caught my eye as I was doing some research for an art project. I wanted to do a 2-D black and white piece that combined many aspects of the military and those who risk everything to protect our freedom. I was downloading pics from all branches when I came across this trailer and my jaw dropped. This will be an amazing movie starring the men who do this for a living. Nothing could be more real or raw. The brotherhood seen between the men and the courage, honor and loyalty they possess will make this one of the best military movies EVER. These are no actors, but THE SEALs. I am definitely excited for this movie!

I found this interesting because I just began re-reading some of my favorite books which are written by Dee Henderson. She is a Christian author and my favorite books are from her "Uncommon Heroes" series about the lives of SEALs, PJs, Federal Agents, etc., and how they live their lives with Christ, how they have relationships and deal with everyday emotions and fears. I started reading these probably Sophomore year of high school. I fell in love with these books and the sense of patriotism only bolstered my love for God and Country. I have always had a passion and desire to be able to serve.

Ironically, as I am getting back into reading for leisure, even taking a step to re-kindle my relationship with Christ I find more that only excites me to push harder. These also come after I told myself at the beginning of this year that I would do what is necessary to get back into peak physical condition, rehab my hips and pursue active duty. It is interesting how things play out and when I decided to pursue active duty I continually find more that only strengthens the flame.

I mention this movie because of how exciting and unprecedented it is. SEALs, as well as PJs, Marine Recon, Delta, Rangers, etc., are silent warriors that are highly-skilled and trained and risk everything for their fellow warrior, their families, their country. They all do it for no recognition or praise. These men make me proud to be a soldier and to be a part of our history. These men risk their lives everyday, even when the American people know nothing of what they are doing, they risk their lives. Our country has lost a sense of patriotism and community, ideals that soldiers everyday fight to protect. I hope this movie does extraordinary because individuals like this deserve abundant praise and gratitude. I look forward to the day that I began active duty and hope that I have the pleasure to interact with such extraordinary men. God Bless Our Troops!

A New Year and New Challenges!!

2012-01-01T19:12:00.000-08:00

A new year and many new challenges to come!

2011 was definitely a rough year, but I am still standing and still fighting! I feel very motivated and am excited for many things to come this year. I like to set goals for myself each year and usually am able to accomplish many of them or continue to work on them as the years go on. But first a 2011 recap!

2011 started off with a hip surgery performed by Dr. Millis at Children's Hospital of Boston. It was a hardware removal combined with removing scar tissue, "tweaking" some issues and a scar revision. Unfortunately, it was not enough and I ended up having a right femoral rotational osteotomy in June at Children's. I was able to meet other fellow hippie, Sarah Zimman & Jillian Murphy, and saw some sites in Boston. It ended up being a 7-day hospital stay, my longest yet. It was very difficult being away from my dad and Chloe for that long. But, Chloe did a great job protecting my hip and keeping me company when I got home.

I continued to work on my paralegal certificate full-time as well as began working at a law firm starting this past August. Working, school and recovering from surgeries was very difficult and trying both mentally and physically. There were many times I felt like quitting, but with the support of my family and friends I was able to keep pushing and finish out the year. It was a relief when finals ended and my paralegal certificate was complete, except for a couple assignments that will be finished via independent study this spring. School this past year was difficult because of how my school accommodates, actually does not, accommodate those with disabilities. Even the disability director stated that violations had occurred, yet nothing changed semester after semester. Instances like those have made me a fighter and stand up for myself and what I believe, no matter what it may take. That was also a reason why I was relieved to be done with school, for now. It is my first semester off for over 6 years!

2011 ended unexpectedly as well. As you know I received an unexpected e-mail from Dr. Millis that my bones had shifted during recovery and would require a revisional FO. I was shocked and not looking forward to doing this surgery over! I then received another email from him the Sunday before finals that he had an open surgical slot for the 23rd and could I be in Boston by then. It was a hard decision to make so quickly, but my parents and I decided to take the slot and we booked the flights and hotel and were in Boston before we knew it. I went through many pre-op appointments on the 22nd after a long day of travel. The time was set and everyone was getting ready for the re-do, but plans unexpectedly changed after x-rays were taken and I had my pre-op appointment with Dr. Millis. Based on changes from x-rays a month earlier and the physical exam Millis and his resident decided that it was too risky and the surgery would be post-poned till about March. WOW! No one expected that. They didn't want to cause the bone to collapse or to have to put another plate back in possibly causing more problems or damage, leaving me in an even worsened state. I didn't want that to happen, but I was also ready to be done with the plate and past my right hip surgeries. I know they wanted the best outcome, but I was devastated and felt horrible that I cost my family money we did not have. But, the exam and new images changed the plans and it was ultimately the right decision. Millis wanted me back in about 3 months after using a bone stimulator to help the healing process. He would then re-evaluate if a revisional FO would be necessary or just tweaking to compensate for the shift and give the best alignment and relief. He also said that he would look at left hip images because it was clear there was a lot of impingement and rotational issues. It may only need a scope, maybe an FO and depending on imaging could be combined with the right. Finally, I felt like we were making progress and I could see the end of hip surgeries for awhile.

After finding out that my surgery was post-poned I made a promise to myself to get as healthy and fit as possible before the next round. I want to be healthier with eating as well as fitness. I have started off by weaning off half of my pain meds and cutting out soda & caffeine. DRINK WATER! I have been going through cook books looking for healthier recipes to cook rather than eating out and have been researching workouts and exercises to strengthen my legs (safely) and get in the best shape possible. I have also been looking at doing CrossFit again. I use to do when in ROTC and at the top of my game. It excites me just thinking about it, but I will need to modify some of the exercises because of my hip. I will also be doing low-impact cardio in place of swimming. But, I am SOO excited to be back doing something I love and that energizes me!

This year I will continue to strive to be healthier, further myself mentally, physcially and emotionally. I will apply for law school, continue to work at a law firm and continue to strive towards my dreams. I also plan on furthering Chloe's training towards a therapy dog and service animal. I am also excited to be able to have time to do more art. It has been a couple years since I completed a piece, but have a new portfolio waiting to be filled! I am already enjoying my break from school and look forward to more time with family and friends and maybe even a vacation!

I am excited and already enjoying 2012! I have been relaxing and enjoying time with Chloe and getting ready for a new week. I will continue to fight for my dreams. I found a quote that was a twist on Freud's original. It stated, "What does not kill me, makes me a fighter." I definitely believe that and my dad has said that even when things seem to have me down, that I brush myself off and keep pushing. I will continue to do that with every challenge I face. It's easier to persevere when they are not many obstacles, but true strength and determination is when you feel like you have nothing left and you keep pushing to the finish line. I am excited and ready...Bring it 2012!!!

Completely Unexpected...

2011-12-04T22:26:00.000-08:00

It has been crazy the last few weeks as the semester winds down and I deal with unnecessary work drama. I have also been anxiously waiting for a response from Dr. Millis about the status of my hip and what the next step is going to be. After numerous emails, messages and phone calls I received an email from Dr. Millis last Thursday afternoon. I had just spent 3+ hours at a pain clinic and had headed into work for a few hours. I checked my email and was excited to finally receive a response from Dr. Millis, but was not expecting what I saw next. He said "there is no question that the alignment changed during the last several months of the healing process--NOT a usual thing." My jaw had nearly hit the floor. I was in complete shock and definitely not expecting this. I was expecting to hear that my bone may not be healed and that it would be a little longer to remove the plate, instead I read that my right leg has to be fixed, yet again. Millis said "if we go in to possibly remove the plate and screws and find out things are not yet healed, there will be some choices to be made about what to do--including trying to realign the bone a bit and putting bone graft in." I am not sure what the other options are or what we would do if the bone is completely healed. I emailed him back with numerous questions and a time frame for the next surgery, but am still waiting for a response or call, yet again. Waiting is very difficult, especially when questions and issues are left open-ended. I have thought through many different options, but am still not sure what I am going to do. This is not what I was expecting and something I have feared.

*Head/Neck: My head and neck MRI came back inconclusive, but I am scheduled to see a neurologist in February. It was the closest appointment, which seems like forever because the constant headaches and neck pain have not improved. At least it is scheduled and I can always see my PCP if there are further issues.

*Lt. Shoulder: My shoulder has become unable to bear weight through using my crutch. I am trying to let it rest and use it as little as possible. New pain, catching, etc., have occurred so I am scheduled to see a specialist in about 2 weeks. His name is Dr. Misamore at Methodist Sports Medicine and he has an excellent reputation and specialized experience in the shoulder. He is also a lifelong friend of my pain doc, Dr. Wright. My bestie, Jess, has also seen him and she loves him, so I know I am in good hands. I have gone to Methodist Sports for many years and to many of their docs and they do an excellent job with patient care so I feel comfortable with them. They also sponsor the COLTS!!!

*Hips: As I previously mentioned, I am still waiting to hear from Dr. Millis in regards to the right hip. I just had bursa injections in the left and they seem to help for a few weeks. Both hips have been locking, catching and giving way, so I am trying to be cautious.

*Nerves/Pain Management: I see my pain doc and his partner in a few weeks for a ketamine consult. It should help "reset" my nerves and control the hypsensitivity and flares.

I have been having a lot of pain lately and difficulty controlling my pain. I have been trying to walk without crutches because of my shoulder, but my right leg and hip are very weak so it takes a lot of effort and energy and I fatigue easily. I was prescribed a medicine to help called, Nuvigil. It is suppose to help with the fatigue during the day. The first dose was too much and made me nauseous and shakey. I halfed the dose and it seems to help better without as many side effects. It does make it harder to fall asleep at night, but I am still getting use to it.

I had a wonderful time over the Thanksgiving holiday. I got to eat amazing, home-cooked food that my mom made for nearly every meal, spent time with my older brother and my sister-in-law, watched movies, slept in and had a 2 hour deep-tissue massage to help with my sore body. We also got to take photos for the family Christmas card which my sister-in-law Danelle took and they turned out amazing! Chloe even made the card too :)

I am ready for the next two weeks to be over, to be on Christmas break and to be done with classes until next fall! I am also swamped with work and filing for different forms of disability because I have surgeries to plan around. I am also anxiously awaiting a response from Millis to know what is going to happen next. I hope it is sooner rather than later! Let Finals Begin!!!

Update...

2011-11-22T17:25:00.000-08:00

The last few weeks has been very stressful with school, work, doctor's appointments, diagnostic testing, etc. Fortunately, school will be wrapping up in the next few weeks and I will get a semester off before hopefully attending law school next fall. It is my first semester off in about 6 years! I will definitely enjoy not having classes or doing homework, for a little at least.

Tomorrow, I am having an MRI on my head and neck because of increasing symptoms and pain that I have been experiencing. I have posted about the visual disturbances which would be like seeing through a frosted mirror. At times, I have not been able to focus during these periods in time. First, I went to the ophthmalogist when it originally happened, but structurally everything looked okay. It seemed to ease my mind for awhile, but now it is occurring at a higher frequency which is concerning. After my surgery I started to develop even more unusual symptoms that were not explained as post-op complications. I developed nocturnal enuresis or incontinence which is definitely not typical of a 24 year old. I have been getting increasingly more frequent and severe headaches including light and noise sensitivity. Nausea has returned with a vengeance. My nerves have gone into overdrive as well. I have been also experiencing frequent nose bleeds, but only on my right side. Like most people I tend to hold my stress in my neck and shoulders, but lately it has been severe despite different release and relaxation techniques. Needless to say that an MRI will be helpful in determining if there are any issues with my head, neck, etc.

I saw my PCP yesterday to discuss some of these symptoms and the EDS and she agreed that an MRI was necessary. Typically, a CT w/ and w/out contrast are used, but with my history an MRI was decided would be the best. They also decided that it is time to see a neurologist as well. Chiari Malformation was discussed as a probable cause for my symptoms especially because it occurs at a higher rate in EDSers due to the collagen deficiency. If it is not Chiari, it may be a new onset of migraines which will also need the help of a neurologist. An appointment with a neurologist is long overdue because of all my nerve issues. My PCP also wanted a new blood panel done because it has been close to a year and it will help determine if any of my meds have affected blood counts, thyroid function, etc., and may account for the increased fatigue. I should know my results soon and I hope that these tests will help move us in the right direction.

Other Updates:

*Hips: I still have not heard back from Millis about my 4 month status, but will see my local OS for my 5 1/2 month post-op appointment a week from Friday. The pain in my right hip has still been very intense. I had x-rays done about a week ago and the bone has not completely healed and we may even be dealing with non-union, which would require further treatment to get the bones to fuse. One of the screws in the x-ray seems to even be bowing, which could either be because of the weight allowed on my leg or the non-union or both! I also say a THR doc as an option for the joint pain, but found out because of my FO I would need a custom implant which is $$$$$$ or the femur would need to be re-broke. Neither seems like a legitimate answer. The left hip has been a pain. I am still dealing with the chronic bursitis and it seems to be catching/locking more. It has been compensating for a very long period of time, but we can not address it further until my right hip is stable.

*Left Shoulder/Wrist: My left shoulder has been throbbing lately. It is the arm that is predominantly used with my crutch so that I am properly using my crutches and rehabbing my gait. However, it is a lot of stress on my shoulder. It has been subluxing more and more recently I hyperextended my wrist just doing basic daily tasks. I have been sleeping with my Flector patches on my shoulder which helps with the inflammation, but I will need to make a visit to Methodist Sports Medicine to see an Ortho for my shoulder soon if there aren't any improvements. I have continued to do strengthening exercises, but am getting to the point where I have hit a wall.

*Nerves/CRPS-2: I have had a history with nerve issues that started with nerve entrapments in my legs when I was running prior to my EDS diagnosis. I have had nerve entrapments in my hip, meralgia paresthetica, femoral nerve branch impingement, as well as nerve hypersensitivity and dysfunction classified as CRPS-2/autonomic dysfunction. I had taken Neurontin for an extended period of time and was at a dose of 2800-3200mg a day which at that point becomes ineffective. I then was placed on Lyrica and am at 400mg as well as Cymbalta. I am on numerous pain medications and have had numerous sympathetic blocks and nerve blocks, but we have come to a road block. My pain doc is having a mini team "conference" about a pain plan for me which may include ketamine or lidocaine infusions, medication adjustments, OT, acupuncture, pain counseling, etc. My pain doc right now is leaning towards the ketamine infusion, med adjustment, OT and counseling, but I will know more at my next appointment with him. I have set up a session with OT and a pain psychologist. I have definitely felt defeated over the last couple years, so I am willing to do what is needed to get some relief and some peace.

I have also set a goal for myself to lose 20lbs. I have gained weight since being in Army/ROTC and having numerous surgeries. The surgery/recovery process has token a toll and I am definitely not as "fit" or healthy as I would like to be or need to be. I need to be stronger and get in shape as much as I can with recovering. I have been doing pilates, but need to do more than I have been as well as adding additional low-impact cardio. It will be imperative for future surgeries and recoveries to have more strength otherwise results will not be as good as they can be. I would also like more energy and self-confidence. I have been down about myself and would like to feel better.

I have been looking into more inspirational and spiritual readings, quotes, music to help with my healing process and to help answer some of the questions and struggles I have had for years. I looked up my favorite biblical scripture:

"My peace I leave with you, my peace I give to you. Not as the world gives to you as I give to you. Let not your hearts be troubled, nor let them be afraid." John 14:27

I found this on an EDS support page and found this very inspiring:

To get up in the morning only to know that you have to face another obstacle takes strength. To smile when the only thing you can do is cry takes bravery. To act happy and laugh when you know that times are at their worst takes courage. To be joyous when the only good news is the best of the bad news takes support.
******

I want to wish everyone a Happy Thanksgiving and hope that everyone has a great holiday with the ones they love! I am very grateful and thankful for my family, friends and my aussie pup, Chloe. I am truly blessed!

The Thoughts of Others

2011-11-15T20:26:00.000-08:00

The other night I was very upset by the words of someone I considered a friend. It was about me and posting my thoughts and feeling on my blog and on Facebook. It was about not being positive or believing that my surgery would work. It was about me not being grateful that I was not in a life-or-death position or grateful that others were worse off then me; therefore, I should be happy. I was hurt by the fact she was telling me this because I believe those things are not true, not to mention that it was all about my "wrongs."

I tried explaining to her that my blog and Facebook page were my outlets to express how I feel. I also tried explaining that it is not someone else's place to tell me how I felt, what I thought or believed. Yes, prior to my FO I was nervous, scared, doubting if it would work. All of which are normal. I was even more anxious by the fact this was a surgery to fix a previous "over-correction." It had been a long two years and I was nervous about the results, etc. I wanted and pushed for the surgery because all other options had failed. My parents helped pay for large portions, even used a bonus my dad received from work. This was the last real hope we had to make my right hip function better and decrease pain. So, I found it hard to listen to someone that was trying to tell me what I was thinking, when I was doing anything I could to get better. We are also in two very different places in our lives and have different experiences. Those experiences shape how you handle certain situations.

I have tried to be honest with how I have felt and express those feelings. I try not to put a facade on just to seem happy for the sake of others. It does more harm than good. Recently, my dad found this article in American Family Association Journal. It was about pain, healing and joy. I know I have been struggling with faith recently, but this definitely hit home and related perfectly to the situation I was going through with my friend. Excerpts I found especially helpful were "...Pain is natural and we are designed to feel it. That is where our sense of compassion comes from. We have to trust that God will bring us from a place of current pain to a place of healing and from there to a place of joy." "...We all know happiness, sadness, anger, joy and contentment. We run into more trouble we we try to act as though we do not have the negative feelings than when we intentionally own them. While "owning our feelings" may sound like New Age mumbo jumbo, there is scriptural support for the concept. It's called honesty. We are called to be honest with ourselves, with God and with others, even when it comes to how we feel. David, Job and Jeremiah all got angry with God, asking whether He could see their infirmities or if He was even paying attention at all. God did not strike them dead for being honest with how they felt. In fact, more times than not, He patiently listened and then helped them see things through his perspective. He would let them know that He was still in control and, while they were not aware of it, their suffering was but one step toward finding eternal joy."

I tried explaining to her that not only was I trying to express myself as a way of stress relief, but I was also healing. The last few years have been an intense journey and their were numerous things that I was healing from physically, mentally, emotionally and even, spiritually. It was also a shock to me because I was not trying to contact her with questions or trying to dump my problems onto her, but only expressing myself through my own outlets. It felt more like an unnecessary attack. After the Facebook responses to a posting, she texted me which is where I tried explaining these things. It was not successful, so I emailed her a letter of why I believed what I did and what I had gone through in hopes she would be able to understand more of where I was coming from, but it didn't work. I casually asked her the following day if she got my letter and it went south from there. I was told that all I talk about is myself and how I have had a lot to deal with everyday, everywhere. That I was not a positive person and that it wore on her. I was very upset at this point. I poured my heart out to her in a letter and again was attacked. Others tried telling me that when people lash out like that it is because of insecurities they have with themselves. That may be true. She may be lonely or scared, but that is why I tried telling her that is was okay to express yourself.

It is not someone else's place to tell you how to express yourself, to tell you how you have felt, believed or what to believe. I had not sought her ought, but instead she commented to me. If you do not like what someone has to say, what they believe, or want to talk with them, than why seek someone out to do so? It felt like an attack. I know this person has been dealing with a lot and I tried keeping the letter honest and tell her that I appreciated her, but also tried to be honest with what I was dealing with as well. You should not be tearing others down because you are stressed or do not like their beliefs or how they handle life's circumstances. I also tried explaining to her that through many counseling sessions I have learned that it is very cliched to tell someone because someone else is worse off you should be happy. It is sad that others suffer, but it does not make your struggle easier or less important. Again, she disagreed. I told her she is allowed to believe what she wants, she is allowed to express herself how she pleases as am I. People are different and handle things differently and that it okay, but to come after someone and criticize them, attack what they are doing only, tears them down. It has not been the first time this has happened, where she has lashed out or sniped at me.

I know that I may not be happy all the time, but God didn't promise happiness, He promised joy. I also know that I am human and can only do my best. I try to be honest with myself and my feelings and right now, I am healing. I can only do what is best for me. I can not make decisions about my life on the basis of others. I did my best not to get angry with her, but tried only to support her. She is dealing with serious issues, but so I am. I try my best to be honest, but sometimes it may take time for me to be strong enough to disclose all the details and some I may never will and that is my choice. But, please don't tear down others. There are enough people to do that, but rather we should lift others up through our words and actions. I will let her be, told her I would always be there if she needed support, but it still leaves a sore spot.

A Daily Battle

2011-11-14T20:44:00.000-08:00

I have been definitely struggling more lately. I do my PT exercises everyday, but have hit a plateau. I am hoping to hear back from Millis very soon because I am sure that the plate is contributing to that. It also causes issues with the IT band and pulls the leg more inward. All which I was told about prior to surgery. I knew that the plate was not going to be comfortable as I was told, but it seems that its more like stabbing, throbbing pain. It may alsoe be the cause of my femoral nerve pain, which was not a problem prior to the FO. Needless to say, I WANT THE PLATE OUT! At this point, I don't even care if the bone is completely healed. I say that now primarily because I am frustrated and can only handle this level of pain for so long. I seem to be pushed from one doctor to another and I feel as if no one wants to take my case because of all the issues. Even my local OS, who has done 3 prior surgeries with me, does not want to do my hardware removal, despite the suggestion from Millis.

I saw a THR doc today. It was a referral from my pain doc. My pain doc, Dr. Wright, was able to locate my sources of pain through a series of blocks. He did the first under fluoroscopy and into the joint space. It relieved about 60% of my pain. Then, he did a femoral branch nerve block and that took away the rest of the pain in my right hip/leg. He wanted a second opinion about his findings so sent me to a colleague in hopes that a THR would be an option to help with the pain and improve function. The appointment was an EPIC FAIL! It did not go as I thought or expected. He seemed nice, but did not have the greatest bedside manor. He didn't seem to understand what I was going through or the pain that I was having. He did not think I was a candidate for a THR. It wasn't that I am too young or even that the plate is still in, but that because of the FO. The FO changed the position of my femur, which I knew. I did not know that because of the angle of the new position it would take away the possibility of a THR in any realistic terms. When the plate comes out and if the joint pain remains as it has been then I would need a custom piece made me for, which he stated would cost tens of thousands of dollars for the implant alone OR my femur would have to be re-broken. Wow! I was not aware that my FO would take away the possibility for a THR in the future. This is definitely on the top of the list of things I need to discuss with Millis. I am more than over this process and ready to have some sense of normalcy back in my life. I spend waay too much time in doctor's offices, PT, diagnostics, procedures, etc. A break would be nice and NOT a break in my bone lol

I left the appointment with more questions than answers. It is all waiting on what Millis will say and what we can work out. Although Maiers said he is not comfortable doing the hardware removal, it may be my only option at this point. Millis suggested that it was a simple procedure he was more than capable of doing. I just can not financially fly out to Boston at this time, but the pain is so intense I want the plate to come out to definitively determine the source(s) of my pain. We can not even begin to work on the left till the right is stable and as of last week, my left hip has less joint space than the right. It has been the leg being used to compensate for over the past 2 years. I emailed Millis again this afternoon and am keeping my fingers crossed for a call in the next couple days!

My shoulder and wrist could also use a break. My left shoulder, wrist and hip are definitely "shouldering" the burden. No pun intended, ha! My left shoulder has always been the worse of the 2 because of a severe dislocation in high school, but lately has been subluxating a lot more. About a week ago my left wrist gave out while getting things out of my car and my body weight fell onto my wrist hyper-extending it. That did hurt for quite awhile. I use a supportive brace that still allows me to grip the crutch.

More concerning than the skeletal issues are the constant headaches I have been having for the past 3 or so weeks. I continue to get visual disturbances. They started in June, prior to my FO. I thought it was a freak thing, but they are becoming more frequent. They are temporary periods of blindness. It is not dark, but fuzzy and unable to distinguish anything. They are short-term, but not normal. I saw my ophthalmologist in June when they first happened and he could not find anything major at that time, but it may be time for another visit. We do know that it is not a prescription issue and the headaches are not eye related, as of now. I have also been having bouts with some intense nausea. It is not a fun thing to have, but zofran seems to help that. It may be time for another trip to the PCP!

I have been feeling very stressed trying to manage everything: school, work, medical issues, financial issues, etc. Work can be difficult because of so many appointments or just not physically being able to get there that day. School is another issue because my school does not accommodate very well. I just had a meeting with our school's ADA service and even they admitted that the school, especially my program, was particularly poor in dealing with these issues. They the professors "do what they want." That makes it very difficult to get help with missed assignments, extensions, even a safe place to sit in the class. Finances always seem to be a struggle, but lately even more so than usual. My family is stretched very thin with little reserve to help because they have helped so much already. I am not fighting for social security disability and will be filing for VA disability to help supplement the income I can not make working or when I have surgeries or procedures done. I am hoping that will help ease the burden and stress a bit.

It has been a lot to struggle with, but I am grateful for my family and close friends and of course, my pup, Chloe! My family and friends help hold me up when I am not strong enough, encourage me and give me an abundance of love. For that, I am truly grateful. I have been very blessed with some amazing people (and aussie shepherd) in my life!

Is A THR Next?

2011-10-28T20:38:00.000-07:00

I had my 4 month post-op appointment with my local OS this past week. I was there to get the routine post-op x-rays and to determine if the bone was continuing to heal properly. I was also there to get a gameplan to when my hardware would be able to come out and determine why I was having intense nerve and joint pain. The appointment was complicated by the fact that I had tripped and fell a week and a half prior, so we were also checking for any damage from the fall.

Unfortunately, my bones do not seem to be healing as they should be at this point. It did not look as if the fall had damaged anything, but we would not be completely certain until the hardware is out and further diagnostics can be done. I asked if Dr. Maiers would be willing to do the hardware removal here, since Millis said that it can easily be done locally. Unfortunately, he does not want to do it because of my complex medical history and who can blame him. So, I will be heading back to Boston for yet another surgery and probably not the last. I wasn't sure what to ask him at this point, even though I had already prepped questions, but it didn't seem to matter because the surgery wouldn't be happening locally. I asked about the intense pain and whether it would get better with hardware removal and he said that only about 25% of patients get relief from hardware removal and I know how well that helped me by removing the pins, it didn't. At this point I asked if the pain was ever going to get better and he said it would be hard to tell because we are not sure where the pain comes actually comes from, if it is from the nerves, the joint or even part of it was stress/anxiety/psychological. I asked if I should consider a THR or if that would even help. He did tell me that it could help if the pain was coming from the joint. I was in tears by this point and asked if that would even help or if this was going to be it. He then responded by saying "that this may be as good as it gets." Of course, that didn't help. To feel as if my doctor was giving up on me or giving up on the fact that I would be fixable. I don't remember much after this point. I put on my jacket, grabbed my stuff and checked out. I was not composed as I wanted to be, but rather left with tears streaming down my face. I couldn't have been more upset.

I have been digesting the information and it has not been easy. I emailed Millis in Boston and have not heard back yet. I am anxious to hear what we are going to do next because that is what was suppose to happen during my appointment with Maiers. I am hoping to be able to schedule my hardware removal in December prior to next year so that it will be fully covered by insurance and help lower our costs even a little bit. I also left a message to request an appointment with a local neurosurgeon to test for femoral nerve entrapment and other nerve issues that I have been having and to determine if it is contributing to the hip pain or different altogether. A friend of mine, Sarah Zimman, gave me the number to her THR surgeon in Boston and I will see if I can have a consult with him to see if a THR is a viable option for me at this point. I am not sure how much more I am willing to endure at this point. Hopefully in a few days I will have heard back from Millis and have some appointments set up and at least have a gameplan in place.

I just want my life back, as much as I can get back.

Trying to Understand

2011-09-29T23:57:00.000-07:00

I found this on another EDSer's blog, Jillian Murphy. She also came across it on another blog. She has an incredible story, so please check her blog out at: http://jmurphx11.blogspot.com/ A link is also on the right hand side of my blog under "EDS Blogs." I would like to post this to help others understand and raise awareness on how people with EDS feel on a daily basis.

*I came across this letter on another EDS blog and decided to share it--I DID NOT WRITE THIS LETTER--I do not know who authored this letter.

Having Ehlers Danlos Syndrome means that many things change. Just because you can't see the changes doesn't mean they aren't real.

Most people don't understand much about this disability/disease and its effects, and of those that think they know, many are actually misinformed. In the spirit of informing those who want to understand...

...These are the things that I would like you to understand before you judge me...

I am scared. I don't know what the future holds for me. Will I end up in a wheelchair or will I be one of the lucky ones. If you find me being quiet and reflective, please don't think I am upset with you. I am trying to sort out my fears.

I am angry. EDS has taken so much away from me. I can no longer do many of the things I enjoy doing. I sometimes have difficulty just completing simple tasks. If I appear angry please understand it is EDS I am angry with, not you.

Please understand that having EDS doesn't mean I'm not still a human being. I have to spend most of my day being very careful about what I do, and if you visit I might not seem like much fun to be with, but I'm still me stuck inside this body. I still worry about school, work, and my family and friends, etc. and most of the time I'd still like to hear you talk about yours too.

Please don't assume you know what is best for me. EDS has affected my joints and such, not my mind. I am capable of making my own decisions. If I make the wrong decision, it is I who has to deal with the consequences. I still want to be part of the "gang." Please continue to invite me to participate in activities. I'll decide if I am capable of it. You may think you are being considerate by not inviting me to go ice-skating with everyone else, but it hurts when you exclude me. Maybe I can't skate with everyone else but I can bring the hot chocolate and watch.

Please don't tell me you know how I feel. You don't. Don't offer me sympathy; I don't want your pity. But do offer me support and understanding, which I appreciate. I know sometimes I look perfectly healthy, but looks can be deceiving. Please understand that I am dealing with invisible pain and a lot of fatigue. Even on a good day I feel like you do when you have the flu (tired, achy, sore). Please keep that in mind.

Please understand the difference between "happy" and "healthy." When you've got the flu you probably feel miserable, but I've been sick for years (EDS is genetic, this means I have had it since birth--even if I was only diagnosed recently, I have been suffering from this since I was born). I can't be miserable all the time, in fact I work hard at not being miserable. So if you're talking to me and I sound happy, it means I'm happy. That's all. I may be tried. I may be in pain. I may be sicker than ever. Please, don't say, "Oh, you're sounding better!" I am not sounding better, I am sounding happy. If you want to comment on that, you're welcome.

Please don't tell me how "Auntie Mary" cured her joint problems by drinking vinegar or any other supposed remedy. If you want to suggest a cure to me, please don't. It's not because I don't appreciate the thought, and it's not because I don't want to get well. It's because I have had almost every single one of my friends suggest one at one point or another. At first I tried them all, but then I realized that I was using up so much energy trying things that I was making myself sicker, not better. There is NO cure for EDS (and until they find the exact genes causing it, and technology and medicine get to a point where something can be done about this, there will be no cure), only some of my symptoms and pain can be treated. If there was something that helped, then myself and other sufferers would know about it (this is part of the reason I am a member of the online communities I am a member of). This is not a drug-company conspiracy, there is worldwide networking (both on and off the Internet) between people with similar and different chronic illnesses and disabilities, and if something worked we would know about it. If after reading this, you still want to suggest a cure, then do it if you must. Preferably in writing and accompanied by the scientific papers that prove it works. But don't expect me to rush out and try it. I might not even reply. If I haven't had it or something like it suggested before, and it sounds reasonable, I'll probably take what you said and discuss it with my doctor.

I want you to know that the pain and instability etc. from EDS moves around. Please don't attack me when I'm worse by saying, "But you did it before!" If you want me to do something, ask if I can and I'll tell you. Just because I climbed the stairs yesterday (or an hour ago) doesn't mean I can do it today (or in another hour). Yesterday (or earlier) my shoulder was throbbing; today (now) it is my knee, who knows what it will be tomorrow (or later). Also understand that being able to stand up for five minutes, doesn't necessarily mean that I can stand up for ten minutes, or an hour. It's quite likely that doing those five minutes has exhausted my resources and I'll need to recover--imagine an athlete after a race. They couldn't repeat that feat right away either. Please repeat the above paragraph substituting, "sitting up", "walking", "thinking", "being sociable", and so on...it applies to EVERYTHING that I do.

Similarly, EDS and the symptoms of it may vary suddenly--meaning I may need to cancel an invitation at the last minute, if this happens please do not take it personally.

Please understand that "getting out and doing things" does not make me feel better, and can often make me worse. EDS may cause a secondary/reactive depression (wouldn't you get depressed occasionally if you had a body that could change suddenly for no reason, caused you pain 24/7 and could spontaneously rearrange itself through no fault of your own) but they are not caused by depression. Telling me that I need some fresh air and exercise is not correct and probably not appreciated--if I could possibly do it, then I would.

Please understand that if I say I have to sit down/lie down/take these pills now, that I have to do it right now--it can't be put off or forgotten just because I'm doing something else more exciting. EDS does not forgive it's victims easily.

Please understand that I can't spend all of my energy trying to get well from EDS, it is incurable (and genetic, so unless I can change my gene's I cannot change my disease/disorder). With a short-term illness like the flu, you can afford to put life on hold for a week or two while you get well. But an important part of having a chronic illness or disability like EDS is coming to the realization that you have to spend energy on having a life while you're sick/disabled. This doesn't mean I'm not trying to get better. It doesn't mean I've given up. It's just how life is when you're dealing with EDS or any chronic illness/disability.

As you can hopefully see, EDS really sucks!

Finally, please remember that I am the same person I was before I was diagnosed with (started getting symptoms of) this; EDS doesn't change the heart and soul. I still laugh, I still cry. I still love and I still hate. I am me, I am not my disease. Please continue to love me just as you did before. I need lots of love, understanding, support and hugs, just like you.

But most importantly, I need you to understand me..

3 Months Post-Op!

2011-08-27T18:20:00.000-07:00

It has been too long since the last post and I have a lot of information to share. I am a little over 3 months post-op from my right femoral rotational osteotmy. It has been a very long 3 months dealing with the severe pain and complications that I have. My femur is healing nicely and hopefully that will continue. Unfortunately, I am still on many pain medications to manage the pain throughout the day. My nerve medication, Lyrica, has also been increased to help deal with the nerve pain, hypersensitivity and possible entrapment.

New Hardware

This recovery has been nothing like I imagined. I am a week past 3 months post-op and still using 1 crutch at all times and sometimes both because most recently my lower back/SI region has been having unbearable pain. I will need to talk with my OS and PT because the surgery caused my already shorter leg to be even shorter throwing off my spinal alignment and causing instability. I have had SI dysfunction throughout the years, but as my activity level has decreased and I have needed more surgeries, compensation/weakness has caused issues in other areas, like my back. I am going to have to go back to wearing custom orthotics to help my SI instability and gait.

The pain has been worse than anything I could have imagined. The nerve pain alone makes it hard to even stand up. I have had numerous other nerve entrapments in my legs and hips, but it looks as if my femoral nerve is entrapped and why I am have recurring pain after blocks/injections/medications. I have had 2 spinal blocks in the last month and numerous femoral blocks since surgery. I spend a lot of time at the pain clinic trying to figure out and manage what is going on. It takes a lot out of me just to go to a doctor's appointment or physical therapy session. I have to choose what is most important to do because there are many days when I don't have energy or strength to leave the house. I have been experiencing more nausea lately and I am unsure why.

I have also experienced an embarrassing complication since surgery. I have been having urinary retention/incontinence issues. I know that seems like a contradiction, but what has been happening is that the retention during the day causes incontinence at night. My bladder muscles have weakened and are not able to help enough in the voiding process which leaves a bladder that is not fully emptied. Then, at night, the bladder has become too full and not able to hold in the urine because of the weakness which causes night time bed wetting. When I went to see Dr. Millis for my 3 month post-op visit I also saw Dr. Yu in Urology and had some testing done to determine what was going on. It is partially from EDS and also from surgery/medications. EDS causes laxity everywhere, especially in organs like the bladder, vessels and muscles, which contain a lot of collagen. I had an ultrasound and urodynamic testing. The ultrasound revealed some cysts on my kidneys which are not uncommon, but not normal. They should resolve on their own. The urodynamic testing was able to let us know how my bladder is functioning. I was put on yet another medication, desmopressin, to help produce less urine at night and take stress off the bladder. After my hip is figured out and I am recovered Dr Yu wants to investigate further why this is happening. But until some of these mitigating factors are resolved it won't be helpful. Yeah, yet another problem caused by EDS!

At this point in recovery I felt worse off then when I started. I am having increasing nerve pain and issues, losing control of normal bodily functions and having increased pain and instability in multiple other joints. Its like a downhill chain reaction. I also found out during my post-op visit that I can not combine my right and left hip surgeries. I was hoping to have my hardware removal and left osteotmy at the same time. But, because my right hip has been so complex that the surgeries will have to be separate to make sure my right is stable enough and strong enough to handle the stress. This means I will have a minimum of 2 more hip surgeries, possibly more. We are hoping that my right hardware removal and tweaking can be done in December when I am on break, but it'll depend on how I continue to heal. I need a few other things done, including a labral repair. The labral tear could be part of the reason I am having continued groin pain. I may be able to have that done locally, but again it'll depend on how the healing goes and what is decided between the docs. I also will need a nerve release done by a neurosurgeon. The nerve issues I have been experiencing have not lessened with the injections and continue to return which is a sign of entrapment. I am hoping that this can be combined with my hardware removal if decided to be done locally. It will cut down on the number of surgeries that are needed.

These last few weeks have been more than challenging in every way. I am dealing with pain and mobility issues 24/7. I am also trying to go to school full-time at night and work during the day. It has been harder then anything I have done. I am fatigued all the time and there are many days when I am not well enough to even leave my house. I am also going through the job hunt process again, because the job I was hired for turned out to be completely different. I need something that is stable and at least pays my basic bills. I have to be able to survive and that doesn't even factor in the amount of money needed for medical bills and discretionary funds. All I can do is keep trying, working, and praying that this will all work out, but it is not easy.

Taking Time to Celebrate My 24th Birthday With Family and Friends

A Prayer

2011-07-11T19:54:00.000-07:00

Dear God,
Speak gently in my silence.
When the loud outer noises of my surroundings
and the loud inner noises of my fears
keep pulling me away from you,
help me to trust that you are still there
even when I am unable to hear you.
Give me ears to listen to your small, soft voice saying:
"Come to me, you who are overburdened,
and I will give you rest...
for I am gentle and humble of heart."
Let that loving voice be my guide.
Amen.

Henri Nouwen

This is a prayer posted by a friend on her blog. Thank you Megan Hershey for sharing this! It means more than you can understand. I was reading her blog for updates on recovery when I came across this and as I read it I began to cry. It was everything I have felt about my faith, my health, school, work, everything. It was a prayer that I had felt, but couldn't find the words to say, until I saw this.

The last couple years have been more then challenging for me with everything from an abusive relationship, surgeries, failed surgeries, school issues, work, finances, etc. It has felt like a constant beating with no relief in sight. Even my faith has been shattered with the stress of life's circumstances. For so long I have felt abandoned by the person I could always count on, God. I felt as if I was alone to deal with my struggles as if they were a form of punishment for not being good enough. I have always been a positive and hopeful person. I use to always wear a smile on my face and if I wasn't smiling I would be asked what is wrong? I use to always know that things would work out. But, in the last couple years in particular I have dealt with depression, sadness, loss and the stress of life began to wear on me and my faith. I stopped attending a church I use to call "home." I stopped praying or thinking about my faith and stopped looking for guidance beyond myself and Earthly family. I have felt abandoned.

I know what people say about staying positive or praying for answers, but for so long I felt as if my prayers went unanswered and even unheard. I know he is still there, waiting for me, but I have also been scared to return. To put my heart out there, instead of leaving the wall up, until I saw this prayer. This prayer explains everything I have felt, but could not explain, not even to myself. I saw this as a starting point. If I didn't know what to say or to pray about, I could say this. It explains how my heart has felt for so long. I don't believe that I am a negative person, but do believe that I have been overwhelmed for so long and it has greatly effected me. I know relief will come for me in many ways and that I will regain my strength and daily smile, but I also know that wounds take time to heal. But for now, it begins with this prayer...

Post-Op Update

2011-07-08T03:44:00.000-07:00

I will be 3 weeks post-op this Monday and have had some rough and low moments these past few days. The pain has increased despite efforts for relief using pain meds, icing, rest, etc. It definitely is frustrating because I am following my post-op instructions, but the pain has been sharp and severe recently, especially in the groin. If I do anything in regards to PT or even a short outing you can definitely tell the increase in swelling in my hip/leg. I try to ice every night before bed. I have also had some side effects to the Lovenox shots with bloody noses. I am going to call my local OS, Dr. Maiers, and see if it can not be ended early. I feel like it's definitely done its job and if there is anyway to change to aspirin or end entirely. I also want to talk to Maiers about the severe groin pain and if it is normal post-op. I have been having popping since surgery, but it has been non-painful and more due to swelling and the IT band snapping over the blade-plate. Fortunately, the nausea has been improving with a change in meds to Zofran which has helped even just with being able to do more daily tasks without becoming overwhelmed with nausea. Now I am just ready to get the pain under control.

I met another fellow hippie, Megan Hershey, this past Wednesday. She is such a sweet and kind-hearted person. She brought me some flowers, soup and fruit. We got to visit for a bit and she looked amazing for her having her PAO in March with Dr. Clohisy out of St. Louis. She was using no walking aids whatsoever! We talked about each others stories, Dr. Scheid, etc. It was great seeing a friendly face, but definitely made me think about what has all happened, what I have lost and already dealt with, but also what is left to be done. It is hard to think that one person's mistake or negligence from lack of experience and ability to know when to say no has had such a profound effect on someone's life. I have been thinking what it would have been like had I never had surgery with Dr. Scheid and where would I be. I would have been on track to be an Army officer, still distance running and maybe having a life that wasn't in constant pain and full of appointments. I also think will I ever be able to get past this stage of constant surgeries and have a sense of normalcy in my life? I also think of how it has effected my family and the burden I have put on them financially, mentally, emotionally, etc. Especially lately, I have felt like such a burden and whether this is all worth it? Will this get better? It has definitely brought me to some low moments. I am trying to find strength through others love, support and encouragement. I hope these feelings will pass with time as I heal mentally and physically. This has not been a short, nor easy journey. I am more than ready for these surgeries to be over with and to get a significant break from them.

I will post some pics of my X-Rays when I see Dr. Maiers in another 2 weeks or so. I am hoping to see some progress with the bone healing and to begin PT and increase weight-bearing!

Post-Op Week 2 & 3

2011-07-06T04:25:00.000-07:00

Post-Op week 1 was spent in the hospital recovering from surgery which I discussed in the previous post, so I won't repeat. Post-op week 2 and going into week 3 has been spent very low-key, resting at home. I have had some decent mobility getting around the apartment, but still need a lot of help getting things done since I am non weight-bearing and don't have any free hands. I have had good pain management with good and bad days, but getting around really well, especially compared to my RPAO. The nausea has been terrible recently, but got a new script for Zofran from Dr. Maiers which has made a world of difference. I have made it out of the apartment a few times even for a little bit around Target. I was able to spend a couple hours out with my friend, J.R., and went to a couple stores and grab a bite to eat. It was nice getting a break and getting out for a bit. My endurance is very low and usually excursions like that result in me napping for awhile afterwards. I have definitely been sleeping a lot, which my body needs to recover.

It is frustrating not being able to do what you want. I have felt bad not being able to do much with my dog, Chloe. I do try and play fetch with her from the couch though. She has not really left my side since I have been home, more so than usual. I think she knows that I am recovering and wants to help :) She definitely makes me feel better and keeps me company and somehow finds a way to make me laugh! She is my baby :)

I have appreciated all the love and support from family and friends, as well as the help my Mom and Dad have given me doing day-to-day tasks. It is a blessing to have so much encouragement and I look forward to meeting another hippie today, Megan Hershey. I also hope that everyone had a safe and wonderful holiday weekend with friends and family celebrating our freedom and nation's founding!

Surgery, Post-Op & the Beginning Of My Recovery

2011-07-06T01:44:00.000-07:00

It will be 3 weeks on Monday since my FO, but I would like to re-cap my surgery and hospital experience. So here goes...

Surgery Day:

My Surgery was Monday, 20 June 2011, at Children's Hospital of Boston in Boston, MA. I discussed my Pre-Op and testing in my prior post, so won't really go into detail about that. The couple days prior to surgery was not really as fun as I anticipated because I was very nauseous due to a UTI and more so, my nerves. I had to arrive at Children's at around 10:30am for surgery to hopefully start at noon. I was still nauseous, but a bit better, but still nervous for surgery. We arrived and signed-in at admitting. I watched Madagascar and waited to be seen by one of the nurses for some quick vitals and lab repeat. I was cleared and they were ready for my just prior to noon. Wow, I thought that was quick. My mom and I were taken up so that I could change and get prepped. It was so cold, so I quickly changed and got warmed up with some blankets. It took a bit longer than I expected, but soon the nurses, Millis and my anesthesiologist were swarming and ready to go. I met Dr. Millis's fellow, Dr. Hayworth, who came in to discuss the procedure, last minute questions, etc. He was very good to look at as well ;) He signed my leg and then it was the Anesthesiologist's turn. My anesthesiologist was Dr. Shoiab Mohammad and was AMAZING! Millis typically hand-picks his teams depending on the case and Dr. Mohammad was very experienced with complicated pain cases, such as mine. In particular, my nerve issues and pain from previous procedures. He explained everything and told me what he was doing every step of the way. He had a bit of a hard time finding a vein. I am not an easy stick and was dehydrated, which did not help the matter. Once the IV was in, I got some meds to relax and we were off to the OR.

Once in the OR, I was transferred to the OR table to be prepped, have my epidural put in, and then off to sleep. The epidural was a new experience for me. I was awake, with some mild meds for relaxation. It was very cold, but the nurses did there best to warm me up and keep me calm. I had to sit-up and make a "C" with my back. I hugged some pillows and a nurse hugged me to keep me still so the best placement of the catheter could happen. My back was scrubbed and prepped and the epidural placed. I finally got to lay down and was covered with warm blankets. We waited a few minutes so that we could test the epidural. After about 10 minutes, both legs were numb and we were good to go! Off to sleep.

The surgery was expected to last about 3 hours, but ended up a little over 4 hours because Millis is very particular in what he likes, which is always good when you are the patient. My right femur was rotated almost 25 degrees internally. The surgery went well and it took about 2 hours for me to wake up in recovery. I don't do well with meds so this was something Dr. Mohammad wanted to watch, so that I monitored carefully. Once, I woke up enough, I was moved up to 10NW to a room.

Recovery Room

Post-Op Night 1:

Surgery ended around 6pm, I left recovery around 8pm and was up to my room soon after. I was doing pretty well, more awake initially then usual. My mom left around 10pm since it had been a long day and she needed her rest as well. It didn't take more than a few hours and the pain was out of control. As the anesthesia wore off I realized only my non-op leg was numb. My op leg was no longer numb, major spasms were beginning, and alarms were beginning to go off because my breathing would drop very low. I was informed about the muscle spasms, but didn't realize how intense they were. Epidural meds would not have helped regardless, so Valium is used post-op to help to relax the muscles. The pain team was called to assess the situation. We were going to try a different combination of epidural meds. With EDS, local anesthetics can be insensitive and not work well, which I had a history with, but since one leg was numb, some of the meds were working, so we were going to try something else. We gave that a couple hours and no luck, so we tried, yet another combination of epidural drugs and again no luck. I was still having severe pain and couldn't keep my O2 sats up. A couple of my favorite nurses, Megan & Cheryl, were there the whole time helping to ease the pain and comfort me. After 3 tries with the epidural drugs, Methadone, was going to be tried. It is used for opiate addiction, but also used in an OR setting for acute pain management. I needed an EKG prior though because of my vitals and the reactions Methadone can have on your body. Once that was cleared we tried the Methadone, but again, no luck. After some good efforts, the pain team decided to put me on a PCA pump or personally controlled analgesic. It allows you to give a short "burst" of meds at a controlled rate. They again changed the epidural drugs, taking the narcotics out to use for the PCA, try some different anesthetics for the epidural, and I was put on oral valium for the spasms. The IV valium clears your system faster than oral, so we were going to try that as well. At this piont, I had all 3 IV's in use, the epidural and PCA buttons, O2 blow-by mask and other lines for monitoring vitals. It was a very scary and painful experience, but I was glad the pain was finally at a point of control. I was exhausted at this point and in need for some zzz's.

Very Out of It

Post-Op Day 1-2:

Incision 8.5in

The first night was rough, but I was able to finally get a bit of rest. I was only able to sip some Sprite and snack on Cheerios. My appetite was definitely gone! I did have an IV of Nubain to help with nausea and pain, so I kept getting tangled in all my lines. My mom told a friend of mine she was a bit afraid to touch me because of all the lines and wires. I would be staying in bed till at least Day 3 when the epidural would come out and I would get clearance for some PT and minimal movement. Night 2 I felt up to some food, so ordered a favorite, chicken nuggets and fries, but when it came I could barely look at it, so my nurse, Megan, got me some more Cheerios and Sprite. Night 2 was not nearly as bad as my first night, but did have spikes in pain and continued spasms. The first couple days were a bit rough for me adjusting and finding the right meds. Of course, Millis stopped by numerous times and even changed my bandages. I was also visited by my surgery sista, Sarah Zimman and her BF, D! She brought me some goodies and plush puppy that smelled like cinnamon! It was nice to finally meet and chat for a bit :) It definitely lifted my spirits!!!

Sarah Zimman & I

Post-Op Day 3-4:

I was moved to a private room Day 3 which was a bit nice, so that I could get some more rest. I was able to keep my favorite nurses! Since my pain was better controlled we transitioned to more oral meds and the epidural was shut off. Later on, the epidural was able to be removed, as well as the catheter. When the catheter was removed the tape left blisters and a nice wound. I tried using a bed pan, but the pressure was so intense on my leg, I couldn't control the pain, so orders were able to be changed so that I could move from bed to bathroom only. I was not able to take a shower yet, but did get a bed-bath and had my hair washed. It felt great to be cleaned up a bit, new gown, etc. I definitely felt more relaxed! It also felt good to get up, even if it was just to move a few feet. I still had no appetite, but tried to keep snacking on some foods like yogurt and Cheerios to help with taking all the meds and the nausea. I did get some rest on and off. Docs and nurses were in and out most of the day, especially since I was having problems with pain. My incision site became more reddened and inflammed. It was watched closely because of my history with post-op infections and healing issues. Fortunately, my incision has not become infected and has looked great since! After only one night in my own room, I was moved to yet another room because the single was needed for a patient with a potential infection. My new roomie and her mom were great! Unless one of us was having a procedure, etc., we left the curtains pulled-back and chatted back and forth.

Day 4 was my first day for PT, which surprisingly went well. I was a little shakey at first on my crutches, but was able to find a balance. I was able to walk the parallel bars and use my crutches a bit. PT would be back again for Round 2 later on :)

PT Round 1

PT Round 2

Post-Op Day 5-6:

By day 5, I was getting around pretty well. Mobility was a lot better than I had anticipated. At this point, the PCA and epidural were shut off, no catheter, IV's were still in, but locked and I was on oral meds only. Pain was under good control with highs and lows to be expected. I still didn't have an appetite, but was doing my best to eat something. At one point, I asked my mom to get me a McDonald's shake :) PT came back for their last visit, which I passed and was even allowed to take a shower! So excited to take a real shower! The small things definitely count, when going through these processes. Since I did not have an appetite I never felt constipated or the urge to have a BM, but unfortunately ended up having a suppository and enema to make sure I was "cleaned out" before going home. After a shower and a shake, I was ready to go home! We would be flying out the next morning, so my discharge would be early. I saw Millis the day before because he was leaving for a conference, but did see his fellows for any last minute questions. Fortunately that night I got my fav nurse, Cheryl, and she was able to help with so much, especially with the early morning discharge. I left the nurses a Thank You note and was able to give Cheryl a big hug before leaving in the taxi. Cheryl and Megan had helped me through some of my lowest points and Children's and I was so grateful for their support and compassion.

Passed PT - Cruising the Hall :)

I spent from Monday morning till Sunday morning at Children's before flying back to Indy. Navigating the airport and flight was not comfortable at all and I was ready for my own bed to relax and sleep in. We landed in Indy around noon and by the time we got home I was exhausted and ready to see Chloe and sleep! I spent most of the afternoon sleeping with Chloe right by my side.

It was not the easiest experience. The surgery and recovery were different in so many ways. Children's is #1 and for a reason. The care is unmatched. Unfortunately, my pain was not as low as anticipated, but they were great in dealing so quickly to make me more comfortable. The pain has a lot to do with my nerve disorder as well as fixing a failed surgery and having so much damage already. I expect my left hip will go much smoother!

It was also difficult because my mom and I had been fighting nearly the entire time and were not seeing eye to eye, which made recovery more difficult and something I won't forget. I appreciate all her love and support, but I was very hurt and vulnerable and attacked on top of that. Things have calmed down and we seem to be getting along, but have not talked about it much. I hope things resolve in the future.

I love Children's!!!

Surgery Pre-Op & Testing

2011-06-17T20:42:00.001-07:00

Yesterday I had my pre-op day and I had to return today for some additional testing before being cleared for surgery. My mom and I flew into Boston around 8am. We had a 6am flight out of Indy and were at the airport even earlier than that. I had finished my last summer class assignment the night before by giving my presentation early. It was real tight getting everything in prior to leaving, especially since summer classes are accelerated already! Let's just say that I was glad to have that part over. I had some last minute things to complete, but spent most of the night giving my aussie, Chloe, some individual attention with tummy rubs and cuddle time. I missed her before I even left. I even ask for pictures to be texted to me throughout the day. This is the 2nd longest time I have been away from her and I miss her like crazy. I ended up not going to sleep at all until the flight.

Yesterday was a VERY long day. Once we landed in Boston we dropped our bags off at the Devon Nicole House. It is housing for Children's patients who are coming from more than 50 miles and offers and more "homey" and affordable place to stay, especially for extended period of times. Once we dropped off our bags, we headed straight to Children's to start all the appointments. It was a little backwards from the traditional process that they use. I started with my pre-op appointment in the Ortho Department. I met Jill while I was waiting for my appointment. She is sooo sweet! She had follow-up appointments that day and after we were both done had plans to go shopping and out to eat. The wait was not long at all and then it was my turn. To my surprise Dr. Millis and Dr. Novias were not there because they were in NY, so my appointment would be with the PA, Erin, who I had never met. I was a little confused at first because when Dr. Millis and I had communicated via email, I was under the impression that he would be there. I still had questions nonetheless, so Erin did her best to answer my questions for about a half hour. A couple will have to wait for prior to surgery because she was not as familiar with my case, concerns, etc.

Questions I asked were:

How long will the surgery take? Approx. 3 hours

How long am I expected to be In-Patient? 4-5 days is expected

What type of hardware will be used? Blade-plate and screws

When does the hardware come out? Depends on bone healing, so can be as early as 4 months or 8+ months.

When I need my LPAO, can the right femoral osteotomy hardware hardware be removed at the same time? Yes

Will I need a scope in addition to the FO to repair the torn labrum? Possibly. It will depend on how I feel after surgery and if the ostetomy is able to take pressure off the tear. If it can not or the tear is large enough to protrude and catch in the joint then it can be done locally with Dr. Maiers. The last scope my labrum was soft and had already sustained 3 tears. There is a 50/50 chance of needing another scope.

Will I be using a CPM during recovery? It will depend on if Dr. Millis thinks I will benefit from one because of potential scar tissue build-up or stiffness.

What are my nerve & pain precautions? Anesthesiology highly recommends an epidural because of the nerve hypersensitivity and the better ability to control pain, etc. A pain team will be following up with care as well. I will also take Lyrica the morning of my surgery to help prevent flairs as well.

What will be my weight-bearing restrictions? 1/6th till 4 weeks, so about 15-25lbs at most.

Driving? Can not drive till I am able to lift my leg. During surgery the muscle is retracted and "shut-downs" for awhile. So, until it begins firing and some strength returns then it will feasible to drive.

EDS precautions? Left hip and shoulder have been increasingly more unstable. We are going to work on things one at a time, but probably during the first weeks I can work on rehab to strengthen my shoulder which will hopefully help until it can be addressed later on. The left hip will be addressed during some post-ops and will discuss options later. This was harder because I really wanted to talk to Millis about this, but will hopefully have a few minutes prior to surgery to mention my concerns.

Dr. Maiers will be doing my local follow-up so I will see Maiers for wound-care(I always have healing issues and get post-op infections because of my EDS), a follow-up at 1 and 2 months and then will be back at Children's for a 3 month follow-up.

After Ortho I went to PT. PT was super-quick because it was going over proper form with my crutches. She said I am a "Pro." You have to be for as many surgeries as I have had :) Then I was off to Pre-Admitting. This is where they double check your paperwork, do some vitals and pre-op labs, go over the medical history and see an anesthesiologist for a consult. This was not too long. Everything was fairly routine, except the Anesthesiologist wanted an Echo as a baseline because of my EDS. She just wanted to make sure there was not any abnormalities or issues they needed to be aware of. She was able to get me in the next morning. After some routine labs we were done for the day. I had to be back at Children's the following morning for an Echo and to check with the Blood Center about the blood I banked in Indy.

After about 5 hours at Children's we were off to meet up with Jill and shop Newbury Street, the Rodeo Drive of Boston. It definitely was!!! The stores were amazing. They had everything from Chanel, The North Face, Pet Boutiques and Forever 21. There was also some great places to eat. We ate a snack at a local bar and the home-style nachos were amazing! We all got to talk a bit and learn more about Jill and she explained some different things about herself as well as EDS. Once the shops started to close down and we were wiped we headed back to Jill's hotel. WE grabbed dinner at this Irish bar and restaurant near her hotel. After that we parted ways because we were wiped! Jill and I probably overdid it with walking and being on our feet. I definitely felt it the next morning :) I fell asleep without a problem!

This morning I had to get-up and go get an Echo in the Cardiology Department. It took about an hour because it was a baseline and needed to be thorough and get lots of measurements. I was able to watch Sweet Home Alabama during the test. The Cardiologist thought the images looked good and I was cleared for surgery!!! It was also nice to know that my heart looked good for now. We checked with the Blood Center about my banked blood and confirmed that he had made it to Children's and was ready for my surgery. Again, we headed about to the house, freshened up and headed out into Boston. We headed to the Prudential Center for shopping and dinner because it was expected to rain. On the way I got a call from the surgery scheduler and that my surgery had been moved up. Mind you that I had just found out about an hour before the time and it was already being moved. lol When Dr. Millis prefers it a certain way, he gets it a certain way ;) It was another long day and my hip have definitely been worn out. I am looking forward to doing the Trolley Tour through the city this weekend and see all the historical sites and some fun shops. Of course, we have to leave after the parade for the Bruins Stanley Cup win!! I don't mind sleeping in a bit and watching the parade on TV. I am not sure if I would be able to handle a lot of people, walking, etc., I am pretty worn out.

I do look forward to some fun this weekend. I have been overwhelmed dealing with everything and have so badly needed a break. I am uncertain if I will actually get it though because my mom has been so hard on me and we clash heads a lot. I just so badly want some fun and everything has been a problem lately with her, so its hard to enjoy anything. I don't know if I can handle a continuous beatdown. I am already very anxious about the surgery. I hope it helps and there is some good news because I don't know if I handle anymore bad news.

Jill and Me

A Few Days Left

2011-06-13T22:48:00.000-07:00

It is currently in the wee hours of Tuesday, June 14th, 2011. I will be leaving for Boston in about 48 hours. In about 12 hours I will be taking my summer class finals early, leaving only a presentation to do tomorrow night. I really wish these courses would have been offered in the fall because the Professors were nice and the classes were pretty interesting. I took Criminal Law and Bankruptcy Law which only leaves 2 classes, I believe, for my Paralegal Certification. I am hoping to finish those in the fall on a part-time status and work full-time during the day. That is my goal anyway, barring any complications from surgery or recovery. I am fairly concerned about my left hip and shoulder because they are becoming more and more unstable from the burden they have taken. I am hoping PT, Dr. Millis & Maiers, and myself will be able to workout a plan to safeguard my other joints while my right hip/leg heal. I will hopefully find that out on Thursday during my pre-op, etc. I have an entire list of questions and have been adding to them as different things come to mind.

I have felt very overwhelmed lately with trying to finish classes (why I took summer classes, I don't know!), getting my apartment "recovery friendly" and all the last minute things that go on with traveling, etc. I have barely had any time to relax or do anything for myself. I desperately want a break and not one that involves my bones or a stay at a hospital. I have literally gone non-stop for over 2 years with 5 surgeries during that window. I have either been in school, working, recovering from surgery, surgery during breaks or during school, working full-time during breaks to pay for surgery, etc. There has been little or no down-time to relax and at this point I am desperate for some TLC. There has been no trips, weekend getaways, concerts, nothing. I so badly want some time off. I sit here with tears rolling down my face as I write because I feel so overwhelmed. I am trying to stay positive, but I know this is not the last surgery because my left hip still needs to be addressed. There has been so many moments in which I want to cancel and avoid this all together. I have my doubts that I can keep doing this. I am giving all I have just to keep it together and get everything accomplished in the next hours. I am just hoping that I get to enjoy some time in Boston before surgery on Monday. I am planning to meet up with Jill Thursday for a bite to eat and shopping on Newbury St. I hope that some company and cute shops will bring my spirits up.

Boston or Bust

2011-06-05T22:04:00.000-07:00

The last couple weeks have been stressful and the next 10 days will only be increasingly more stressful. As the spring classes ended, the summer session started only a few days later, leaving no time for a break. The first weekend of my summer session I spent with my Army National Guard unit to do our monthly training and medical mission. Although I am not physically able to do a lot, it is nice to be in a medical unit where I do have a job and can feel like I am contributing to the mission. And, of course, I do love my unit! I have some very close friends or family and we can make almost anything fun. The downside is that the weekends are very long and with trouble or no sleeping it becomes very draining. I am hoping that after surgery with less pain and better function life will begin to return to normal, I will be able to sleep and function more normally.

SPC. Heather Moon, SSG. Angela Darrall, SPC. Lauren Guieb, Me

My baby, Chloe, turned 2 this year! She has definitely matured a lot and we have bonded very closely. I love her soo much and definitely spoil her as often as I can. The 25th is her birthday and I had planned to get her some favorite treats at 3 Dog Bakery and some new toys. The weekend prior to her birthday I noticed some small, hard growths on the side of her lip, which had not been there just a few days earlier. Sunday morning I took her to Banfield Pet Hospital to see her vet. The vet did determine that they were not cysts, but tumors and highly recommended having them removed and biopsied because there were concerning. Also, since she would already be under anesthesia he suggested dental scaling to maintain her dental health, etc. I agreed and we scheduled Chloe for surgery, but unfortunately, it would be on her birthday. Wednesday she went in for her surgery and dental cleaning. The surgery went great, removed the tumors, stitched her up and sent her home with some pearly whites. She would have stitches in for 2 weeks. A few days later I was trimming her nails and noticed another growth, but on her paw. My stomach sank. I felt so terrible because she may have to go through this process again and that the biopsies may not come back with good results. The following morning we were back at the vet. The vet determined that it was an interdigital cyst and not related to the other growth. It was an inflammatory reaction that is very common in dogs, especially with longer coats. Back home we went. That evening I noticed Chloe digging and scratching at her ear. I examined her ear and it was obvious that she had a bad ear infection. I tried cleaning it out and holding warm compresses on it because I did not have any meds and we would have to return to the vet again in the morning. Poor pup was so miserable. I held and tried to comfort her all night. Sunday morning when I woke to get ready to take her to the vet I noticed her making a strange noise and her whole body was convulsing. I tried waking her, but her eyes were rolled in the back of her head. Chloe had just had a seizure. I couldn't believe it and just felt so horrible for her. What a terrible week! Chloe and I headed back to the vet for the 4th time in 8 days. The vet took a culture of the discharge in her ear. It was definitely an ear infection because of the overgrowth of yeast. It was probably caused by the post-op antibiotics throwing of the yeast/bacteria balance. He looked at her paw as well. Chloe was given meds for the ear and paw. One of the meds would help with both the inflammation in the ear as well as the paw. We also discussed her seizure. He determined it was probably caused by the cumulative period of stress. It is not uncommon for high-anxiety dogs such as Aussies and Border Collies to have a seizure after a high or cumulative period of stress. It is something we would just have to be cognizant of. We were also able to find out the results of the biopsy which were negative, benign tumors. Whew! What a relief! I couldn't bare the thought of losing Chloe. Again, we headed home, armed with meds and would hopefully not return till the follow-up for the stitches. Within a few doses Chloe was doing significantly better and after a couple of days she got her spunk back!

Chloe's 2nd Birthday-May 25th

I am so glad that Chloe is on the mend because there would be no way that I could leave her sick in Indy while I would be in Boston. She is my fur-child and I need to make sure she is okay. I am just glad that she is feeling so much better. I hate seeing her in pain and sick. I only have a week and a half before I leave for Boston. There is so much left to do and yet, I am so anxious about another surgery. You think I would be use to it by now being that this one will be #8! I will be finishing my summer session a week early so I will be taking my finals, giving a presentation and turning in papers/projects before I leave next Thursday morning. Also, I need to prep and clean my apartment, pick up last minute items, clean, pack, and go to a couple last-minute doctor appointments. One will be to an ophthamologist because my "good" eye suddenly has periods of blindness or will be completely unfocused. I am worried it is related to my EDS. So, I will be having it checked this Friday just for my peace of mind.

Although my last few days prior to leaving are maxed with things to get done, I can not stop thinking about surgery. For the first time this weekend I thought about canceling it altogether. I get so anxious prior to surgery, but especially prior to major ones such as my RPAO and this FO. This is also more nerve-racking for me because this is a surgery to attempt to fix what was botched 2 years ago. This will also be different because my care team is aware of the EDS and consistent healing issues, but will also be having to deal with pain management problems because of the nerve hypersensitivity and the deterioration of my hip. I know I am in great hands with Dr. Millis and Children's, but I am still terrified. I know that my hip will never be perfect, nor will I ever be pain free but, it is hard because my case does baffle my doc and at best my hip may be 65-70%. This is a C-D grade range. I never liked anything below a B in school and especially when it involves my health! I also may need another surgery, maybe 2, to address additional issues. I will probably need to have a scope to repair my labrum again, but would be done locally with Dr. Maiers. That will be determined during recovery and how the hip heals. I will need to hardware removed after the bone heals, around a year minimum. This only addresses the right hip. During these last few years my left hip has had to compensate so much it has deteriorated. It is less stable, weaker, has chronic bursitis and consistent pain. This will need to be addressed within the next year because it is clear the scope is no longer helping the problems. This will be discussed during my pre-op appointment when we go over the game plan.

I am becoming increasingly more anxious as the days, hours go by. I was watching one of my favorite shows, House, and they were putting a girl to sleep for a surgery and the thought of that process for my surgery made my stomach flip. I have had moments where I don't want to do this; I don't think I can do this; Should I cancel? I have moments of doubts and wonder will this work? Should I cut my losses and quit now? I know part of this is anxiety and part of this is because I trusted a doc originally and it ended up disastrous. I know I will be in great hands, but it doesn't take away the history, the feelings, the pain. I just hope that this greatly improves pain and function. And I hope that I don't do this and then still need a re-RPAO or THR. That is probably my worst fear.

Late Night Thinking

2011-05-24T22:34:00.000-07:00

It is yet another sleepless night with a lot on my mind. First of all, today is my pup, Chloe's, 2nd birthday! I can not believe she already is 2!! I have been looking through her puppy photos at how much she has changed and grown. She has been a true blessing. She is always happy to see me and is a comedic relief for any situation. She is always willing to share your food with you too ;) I have been through a lot over the last couple years and Chloe has been there along the way. She cuddles with you if your sad, is always happy and willing to play and loves me unconditionally. She doesn't care that I have scars or can't run anymore or that there are times when I don't have a lot of money to spend. She always loves me. I can't imagine how parents may feel about their kids because she feels like mine. I look at her or at a picture of her and I smile from ear to ear. She travels with me and this summer we are going to continue training for therapy dog. She is a great dog and I want to be able to share the joy she brings to me with others. Unfortunately, on her 2nd birthday she will be undergoing minor surgery to remove and biopsy tumors. I just noticed them on the side of her mouth this past weekend. They came up quickly because they were not there a couple weeks ago. I immediately took her to the Vet and he wanted to remove them promptly because they were concerning and recommended having them biopsied. I feel so bad because she is just a young pup! Of course, you begin to think of the worst-case scenario and the possibility of cancer comes to mind. We are hoping it comes back as an infection or virus or benign growth! I can't imagine life without my Fuzz!!

It has been crazy lately with spring semester ending, summer classes starting and preparing for my 8th surgery in Boston. Getting ready for this surgery in some ways has been no different with planning ahead, getting supplies and help in order and setting up all the necessary appointments, etc. But, in other ways it is also very different. This is the surgery to fix my botched PAO from 2 years ago. I will be in Boston at Children's Hospital of Boston with Dr. Michael Millis as my OS. He will be realigning my femur to help with proper alignment of the hip and leg and so that my femoral head fits better in the socket without having to break the pelvis again. I will have a pain team because of my nerve/pain condition and will be getting my first epidural as well as possible block to control the nerves. This is also the first surgery that I have the official diagnosis of Ehlers-Danlos Syndrome, so hopefully that will help in changing the way my incisions are closed so that I can heal better as well as a preventative PT plan that not only helps with post-op, but keeps all my joints in mind. My left hip and shoulder have been in a lot of pain lately because of taking a lot of weight of my right side through using crutches, etc. I have to be careful and protect all my joints, esp since my left hip still needs to be fixed and my left shoulder has dislocated in the past and is becoming more unstable. Prevention and strengthening are key. Of course, this surgery is also in Boston, so I won't be in my hometown of Indy which means my dad and friends won't be able to be there. It will just be me and my mom. Chloe will also be unable to be there. I will miss her so much. I am most anxious about the nerves and my pain level as well as how much this surgery is going to restore my hip. With my last scope I only had the possibility of being at 70% and will be lucky with this surgery if I get to that as well. It is very uncertain because of the complexity of the case what my outcome will be. At this time we are not addressing the labral tears. If the femoral head takes pressure of the labrum a further scope may not be necessary, but it is a possibility of having it scoped again in the future with Dr. Maiers in Indy. It is uncertain at this time what will occur.

As the days go by I get more and more anxious, but I also get excited knowing that this will change my hip and hopefully restore function and reduce pain. I know it will never be perfect or even close, that I will never run again, but I am hoping this will restore some quality to my life. This has been a long 2 years to get to this point and while most are done with both PAO's by this time, I will still be working on fixing the first. Waiting for Dr. Millis is worth it! 25 days to go...

May is Ehlers-Danlos Awareness Month

2011-05-03T17:36:00.000-07:00

May is Ehlers-Danlos Awareness Month...

EDS is a rare connective tissue disorder affecting about 1 in 20,000. EDS affects connective tissue, which are tissues that support the skin, bones, blood vessels, and other organs. There are 6 subtypes that vary in severity from mild to life threatening. An unusually large range of joint movement (hypermobility) occurs with most forms, as well as some form of skin involvement. The loose (hypermobile) joints are unstable and prone to dislocations, chronic pain, and early onset arthritis. EDS causes fragile blood vessels and organs that can lead to ruptures and can also effect the heart. EDS has no cure or specialized treatment.

This is a great resource for information: http://www.ednf.org/images/stories/leaflets/soyouthinkyoumighthaveeds.pdf

*Please do not use this as medical advice or self-diagnose. Please see you primary care physician or genetic specialist if you think you have EDS.

I have been aware of this disorder for a couple of years because of my bestie, Jessica Anderson, because she has EDS Type-3 Hypermobility type and mixed connective tissue disorder. I have gotten to know the terms, problems and have seen her go through some very difficult times. I have also been able to meet some incredible hipchicks that are also effected by this disorder, such as Jill Murphy. Most recently, Jill has been educating me, as well as others, and advocating for EDS education and awareness.

The more that I learned about this disorder I realized how much it related to me. I did some digging around and found out some more about my medical history, researched a lot of EDS and spoke to a couple of my docs. I have no family history of hip dysplasia, but did read that EDS patients are more susceptible to bone deformities and problems, which definitely made sense in my case. One symptom had always stood out to me was my skin problems. My wounds would take weeks to heal, they would tear open and form abnormal scars. I asked my OS, Dr. Millis, how likely it was that I have EDS and he wanted me to go see a geneticist because it was very fitting. I just had my appointment with the geneticist this past Friday and he confirmed that I no doubt had EDS Type 1 (moderate)-Classical type. Classical type has a lot more skin involvement that includes very stretchy skin, soft and velvety to the touch, poor and abnormal wound healing and abnormal scarring, as well as, some joint involvement, etc. It occurs in 2-5 out of 100,000 people. WOW! I was expecting the diagnosis, but there was things the doctor had explained that will effect the future and how I do things that I had not necessarily thought of. The diagnosis also felt like a puzzle piece that had been missing because of all the problems I had, but no answers as to why.

It has been a long couple of weeks with papers and finals, not to mention all the rain we have had which made the days so gloomy. It doesn't help that I slipped and fell last week nearly doing to splits. A majority of the weight went through my bad "right" hip. I have been in extreme pain since. I did go and see Dr. Maiers yesterday to look at my hip and although there are no new fractures, I very likely could have worsened the labral tear. I am suppose to let my hip rest which is nothing new, but is important since the fall. We are going to hold off on the MRI for right now. I have a lumbar sympathetic nerve block next week and donate a pint of blood the following week as well as get a baseline echocardiogram for my heart because of the EDS and surgery is next month! And of course, it will be a relief once this semester is over!

And The Date is Set!!!

2011-04-17T01:30:00.000-07:00

The date of my 5th hip surgery has been officially set for Monday, 20 June 2011. I will be having a right intertrochanteric rotational osteotomy and Dr. Millis will be the performing the surgery at Children's Hospital of Boston. I will be having my pre-op appointments on Thurday, 16 June, with members of his team, Erin (PA) and Dr. Novais (Fellow). Then I will have a pre-admitting appointment to check blood-work, check vitals, speak with the anaesthesiologist, meet with my pain team. Since I have dysautonomia related to my nerves and their hypersensitivity, I will need extra care in managing pain and treatment. I will have 3 days in between my appointments and my surgery which I plan on spending touring Boston and SHOPPING!!!

My surgery is not a common one because femoral retroversion is not a common problem. Hip Dysplasia is about 1/1000, while retroversion or anteversion is 1/5000. I am also being tested for Ehlers-Danlos Syndrome which is a connective tissue disorder that can effect almost everything in your body. It seems highly likely that I have the classical type because of skin involvement and all the symptoms I have. I see the geneticist in 2 weeks so I will be able to get confirmation in regards to that issue. There is no cure for EDS, but having an official diagnosis will help with coordinating treatment plans to help manage the problems and give me the best possible outcome from surgery.

This has been a long road for me which started June 2009 with a botched RPAO by Dr. Scheid. At this point the PAO can not be re-done because it would perpetuate the arthritis and cause even more problems. At that time FAI cam-impingement and femoral retroversion were not caught, so although I had a PAO, residual problems were not addressed that resulted in a PAO fail. Two years later and I am still trying to fix the problems.

At times it makes me very sad and disappointed about the position I am in. Most recently it has been the roughest. I have dealt with more that I could have ever imagined. I was diagnosed with autonomic dysfunction or Dysautonomia. It is found a lot in EDS patients, but I will be seeing the geneticist about EDS in 2 weeks for confirmation. I have had my first lumbar sympathetic nerve block which helped in confirming that there is an issue with the nerves in my right hip and leg. I am having my second nerve block in about 3 weeks and should not need anymore after that. I had my second nerve injection in the front of my hip which should also help with the burning pain. I was also put on a beta-blockers to help with the anxiety. It is a whole-body approach to treating patients at the pain clinic and they try to do their best in giving overall care. I have to work on coping mechanisms and dealing with the anxiety for surgery. Not knowing can be very terrifying. Surgery is two months away and their is a lot left to work on with finals, summer classes, and my National Guard obligations, so hopefully I can stay busy and keep my mind off surgery.

There are others that have upcoming surgeries which include Jillian Murphy-shoulder surgery at Children's Hospital of Boston May 6th, Megan Hershey-rePAO w/ Dr. Clohisy May 16th, Marcie Pratt-RPAO w/Dr. Zaltz May 31st, Sami Straub-LPAO w/ Dr. Scheid June 7th and mine June 20th. There are a lot of hippie surgeries coming up. Good Luck Girlies!!!

True Warriors

2011-03-20T13:46:00.000-07:00

This post is dedicated to some true warriors who exude strength and love...

As many of you know the creator of HipChicksUnite, Krystal Clausen, her boyfriend Joe and son, Dylan, have been going through some incredibly difficult times. Dylan was born on March 11th, 2011 and had his first heart surgery on March 15th, 2011. He was born with Hypoplastic Left Heart Syndrome and has been such a warrior, just like his parents.

I originally got to know Krystal through dealing with hip dysplasia and all that it involves. As a way to share information, promote support for others and raise awareness Krystal created HipChicksUnite. She led the way for awareness and creating a network for hippies with little information and support. It has now grown to over 600+ members from around the world!

I met Krystal, in person, August 2010 during Hippie Union. Dylan was just a tiny little peanut at the time! There was about 10 girls who came to share their experiences and stories, as well as information about our unique circumstances. Krystal was planning on her surgery until she found out she was preggos with lil Dylan. She was post-poning her PAO surgeries until after the birth of her little peanut. She still kept up with the site and supporting all of us. At 22 weeks, Krystal and Joe found out that Dylan had a congenital heart defect called Hypoplastic Left Heart Syndrome in which the heart anatomy is not correctly formed (simple version). Even though Krystal and her family were digesting the news and how it would affect Dylan's health, she still opened her heart to us by telling her story and documenting the highs and lows of her heart journey. Joe was there for her every step of the way, supporting and loving her and their lil peanut.

Krystal and Joe have been going through something that most people will never experience. I can not imagine what they are going through, but I know that they will be doing everything they can for Dylan. Krystal has been so strong and you can see that she has passed it along to Dylan because he is such a little fighter. I am so proud to say that I know such an amazing woman and hope and pray that Dylan gets stronger every day!

There are so many people that are thinking of this warrior family and praying, hoping and supporting them through this journey. Family and friends are those that are able to support you and be your strength when you don't feel strong and I know there is so much love surrounding Krystal, Joe and Dylan! They are TRUE WARRIORS!!!

Dylan - A Heart Warrior

Update!

2011-02-25T18:17:00.000-08:00

These last couple weeks have been very difficult for me. I have had a lot of news to digest in regards to my health. Dr. Millis told me that I will need a femoral derotational osteotomy to fix my femoral retroversion. I did not even know that I had femoral retroversion until that point in time. I knew I had hip dysplasia and that my case was more difficult, but with the additional diagnosis it would only further complicate the surgeries and recoveries. He also spoke to me about getting a referral for genetic testing for a connective tissue problem because it is clear that something else is contributing to the problems. That was a very difficult phone conversation to have. By the end of the conversation I was speechless and in utter shock. Dr. Millis kept explaining different things, but I just couldn't believe that everything was happening. The tears just rolled down my face. Just thinking about going through a FO and it not being enough, then still having to do a RPAO for the second time. I knew this would take awhile to digest.

This past Monday, I followed-up with Dr. Maiers, my local OS per Dr. Millis's request. I wasn't expecting anything that I had not already heard from Dr. Millis. The appointment went as planned and he just reinforced what Dr. Millis said. He said that my problem was definitely very complicated and "way above his pay grade." However, unlike my bestie, Jess, I would not have the option of having the surgery here in Indy by Maiers, like she did because of the complexity and my routine post-op complications that I experience. He also agreed with Millis about a referral to a geneticist. There is clearly something else going on. Maiers did however approve of an alternative PT test for the Army. I would be allowed to do the bike event instead of running. This was a good part because at least I will be able to participate more in my unit and would allow for more job opportunities. I could definitely use a job with a decent income to help pay for all the medical and travel expenses.

Wednesday, I went to Meridian Health Group, the pain management clinic I am using, for a morning full of appointments. They had called me earlier in the week about my lab results and that I had a vitamin D deficiency. My day started with OT to help with different therapies and daily changes I could do to help with the pain and improve my daily functioning. Then I saw the nurse anesthetist for an injection consult. She suggested that I could get some different joint injections to help with the hip pain and nerve issues. I opted for a sympathetic nerve block under sedation. Later, I met with Dr. Wright, an interventional radiologist. He suggested to have a couple of nerve blocks first, then to do the sympathetic nerve block, because it would have a better result. I would do a block in the front of my hip first, then a week later a piriformis block in the back of the hip. I would allow my hip to rest for two weeks and then we would do the sedation and sympathetic nerve block. We got all of the injections set up to be done in the month of March. Next, I went to see the podiatrist to check on my gait, etc., to see if there were any adjustments to be made. My "bad" leg, or right leg was actually structurally longer in length. A temporary fix, was just to add a lift in my left shoe to help. It also is part of the reason I continue to get bursitis in my left hip from overuse. The final appointment of the day was a psych consult. I knew this part would be emotionally draining having to talk about everything that has happened, what I have lost, my stresses, fears, etc. My psychologist, Linda, and the head psychologist, Dr. Gleckman, couldn't believe how young I was and how many incredible things I have had to deal with already and what I would be continuing to face medically. It was definitely an emotional session. I try to put a happy face on, a cheerful façade, but it doesn't always work. They said that I am so strong and people tell me that a lot, but there are so many times I do not feel that way. It had been a long morning of appointments and I was spent by that point, so I headed home to finish homework before class.

I had only been home a couple of hours, when I got a phone call from my family doctor's office. The nurse had called to tell me that my Pap results came back abnormal and that I was being referred to a GYN to get a colposcopy and biopsies. I couldn't believe it! I almost immediately broke out in tears. I was so upset and had no idea how this could possibly happen. I am a health conscious person, had my Gardasil vaccine, yearly check-ups, etc., etc. Now, I have one more problem that I have to deal with. The nurse continued to explain what the abnormalities were. It is called low-grade squamous intraepitheleal lesions. LSIL are caused by the HPV virus, there are over 100 strains, and can also be referred as mild dysplasia. They are abnormal cells that are not cancerous, but can lead to cancer untreated. Some strains of HPV lead to plantar warts on the feet or hands. When I looked up the information it scared me because it was one of the groups of abnormalities that requires treatment and that can't just be watched carefully. Usually docs will run another regular Pap before referring to a specialist, but I was referred immediately, which completely freaked me out. I set up the specialist appointment yesterday and when the nurse asked for me to wait so she could check that the "procedure" room is available, I nearly lost it! She told me not to worry, that this happens a lot, but that was not reassuring at all. I just do not have that kind of luck, no matter how hard I try to take care of myself. When I got off the phone I broke down. I have been feeling so overwhelmed with just dealing with my hip & leg, but now I could be dealing with a potential serious and scary issue. I just don't know how much more I can take. I felt as if I was drowning with no way out. Just the words of "cancer" or "procedure" just sends me over the edge. I just think of all the procedure rooms I will be in, injections, testing, surgery, etc., has me so anxious and it makes me feel so anxious just thinking about it. I am so scared for what is to come and if I will be strong enough to handle it all...

Completely Unexpected!!!

2011-02-20T20:13:00.000-08:00

About 5 weeks ago, I had my 4th hip surgery at Boston's Childrens Hospital with Dr. Millis. Dr. Millis performed a hardware removal and scar revision on my right hip. I stayed at Childrens overnight and was released the following evening after an MRI with contrast was performed. My hip was pretty swollen and bruised, but the incision looked a lot better than the first time around. The surgery did send my nerves into overdrive and I had intense burning sensations down my leg. The sensations would take my breath away and I could not touch my leg when the flares would occur. They have decreased with an increase in nerve meds and time. Dr. Millis told me that he would call me with the results, but he was "cautiously optimistic" that the screws were causing the problems and this would be very helpful. It was also necessary to remove the screws so that he could get useful imaging.

I got to keep my screws!!!

It took over 4 weeks for Dr. Millis to call with my results, despite numerous emails and many phone calls and messages. He called as I was getting dismissed from my drill weekend. He asked how my incision was healing because 3 weeks post-op it got infected. My incision is still healing, but is definitely better! This is when I got the curve-ball. Millis told me that my acetabulum didn't actually look too bad. It could use an adjustment, but he didn't think that was where a majority of the problem was coming from. He then told me that I had Femoral Retroversion, a twisted femur, and the femoral head was hitting against the hip socket, causing pain, bruising and tearing the labrum. When my knee is straight the femoral head hits the socket, but when my leg is twisted outward, like sitting indian style, its "normal," fitting how it should. He wants to do a Femoral Derotational Osteotomy, where the femur will be broken, realigned and plated back together. He thinks could eliminate the problem, but if I continue to have problems then a re-RPAO would be a last resort to readjust the acetabulum.

I was in SHOCK! After everything, now I find out that my femur is twisted! It is more rare than hip dysplasia. Hip dysplasia is 1 in 1000 and femoral retroversion or anteversion is like 1 in 5000. Also, because of my current issues and medical history, Dr. Millis wants me to get some genetic testing done for a connective tissue disorder such as, Ehlers Danlos Syndrome. It might explain a lot of the problems such as poor wound healing, the rare issues, etc. I am also going to a pain clinic to deal with the increased nerve problems, pain management and to see a pain psychologist. I got slammed with so much information to digest. I didn't even know what to say in response. Lastly, Dr. Millis wanted me to go back to Dr. Maiers for an extensive physical exam and to review the op notes from Jan, as well as the imaging. He wanted to see what he thought, if he agreed and then we would all get together to discuss the game plan.

I see Dr. Maiers tomorrow and will hopefully know more and be able to schedule my Femoral Osteotomy at CHB and be one step closer to a better hip/leg. Updates will follow!!!

Me, Dr. Maiers, Jess & Randy

A New Year and More Surgeries!?

2011-01-23T20:05:00.000-08:00

I know it has been a long time since I have posted and A LOT has happened since then! 2010 was a long and hard year. Last year started off with a messy break-up and surgery in early February. I graduated in May with my Bachelor's of Arts in Political Science and ended the summer in August with yet another hip surgery. August, as well as February, were hip arthroscopic surgeries on both hips to fix torn labrums and impingements. My left hip has been doing quite well. The only surgery it has had was a left hip scope, no LPAO as of now. I get bouts of bursitis, but it is holding strong. Unfortunately, my right has not been doing so well. I have had a RPAO, then a right hip scope to fix a badly torn labrum, repair impingement, release the iliopsoas tendon, clean-up some tissue, etc. It was a lot more damage then expected, especially since my activity level is quite low, compared to prior to the RPAO.

1 Week Prior to Surgery-Eating dinner at The RAM with my bestie, Jessica!

My right has been a struggle. It bothers me on a daily basis and affects every aspect of my life. After my scope in August a few of the hippies got together for "Hippie Union 2010." We spoke about our stories, experiences and struggles. It was during this time that one of my fellow hippies, Marcie, was talking about some research studies that she had found about failed PAO's, complications, etc. It was eerily familiar because it was nearly identical to what I was experiencing. I then began to do some more research. I pulled up many articles, etc. Some of them stated not to be your doctors first group of PAO patients because the learning curve is very steep with many complications and 9/10 failures. I then spoke with my Dr. Scheid's nurse about this, because I was so upset that I was needing more surgeries to fix problems that should have been addressed at the time of the PAO. She told me that "I was waaay before 50 patients," putting me in that "test" group. "Great!" I was a guinea pig for my doc and did not even know about it. I then made an appointment to see Dr. Scheid and confront him myself. Not only did he side step every question and was very defensive, he told me I had a "reverse PAO preformed," but all I was ever told was a PAO, which are two separate procedures. All I was ever told I needed was a traditional PAO. He saw nothing wrong, but I pointed out the mal-formed femoral head/impingement on my original x-ray and he told me "that wasn't his job, Maiers did my scope." It was his job to make sure my femoral head fit back in my newly moved hip socket. Maiers had already performed the scope and Scheid followed. It was his job to check his work!!! I also asked if the PAO was suppose to prevent future labral tears? He told me "that it was suppose to slow down the process of arthritis, etc." I was confused as to slow down a process that never existed. I had no OA or degeneration prior to my RPAO, but did after. My labral tears were also more severe after my RPAO, despite the drastically lower activity level. Scheid originally told me that the RPAO would prevent future labral tears, which has not been the case. I couldn't believe that he had made my hip worse. Not only was I practice, he never told me of his experience, which doctors have to disclose, but that he couldn't even keep my history straight. He tells me one procedure was performed, but a separate procedure was actually done. I didn't even think he had a clue about who I even was. He didn't bring in my file and his notes were mediocre at best. I then told him that I was going to see another doctor because my hip was causing me more problems now then before my RPAO. I left, and have never gone back.

I continued my research and realized not only was I a "test patient," but that my hip was royally screwed up. In addition to the hip problems, I have developed nerve problems in my right hip and leg since the RPAO. I am on a lot of nerve medication daily to keep it in-check and have pain medicines and a TENS unit to help with pain management. I also pursued another doctor to fix what Dr. Scheid screwed up. I went back to Dr. Maiers to discuss options and things we could do while I waited for an appointment with Dr. Millis at Children's Hospital Boston. Maiers helped with referrals, as well as calling Millis to bring him up-to-date on my situation. Maiers told me that it doesn't get better than Millis and he knew him well from medical conferences. I saw Dr. Millis for a consult in November. He spent nearly 2 hours with me and went into every detail we could imagine. It was clear that I had a problem and things would need to be fixed. He told me at a minimum another scope and possibly a re-RPAO. But, he was also confident that he could fix it, to what level is unknown, but was positive that he could restore function, etc., and would do his best to make my hip as good as he could possibly get it. He also told me that my case is very complicated and would not be easy to fix. I could see his frustration with doctors like Scheid, who perform surgeries on patients when they are not fully and properly trained and the patients pay the price. On one hand, it was hard to hear that I am starting the process over, but on the other hand Millis was confident that he could fix it! The first step in the process would be the screw removal, which I scheduled for January 10th, 2011.

Waiting in the Pre-Op Clinic @ CHB

The surgery came and went...I am now about 2 weeks post-op from my screw removal. Dr. Millis preformed the screw removal at Children's Hospital Boston. It was not a typical hardware removal because of the pin positioning. Usually it is done outpatient, but I stayed for nearly two days because of the digging and extensive nature of my surgery. It took about 2 hours, almost 3x the typical case. Millis also performed a scar revision to fix the old scar and allow for the wound to heal better. I have nearly an 11 inch scar. Usually, I heal very poorly and have to do wound dressings for weeks, but not this time. Not only does my scar look amazing, it is healing great. Millis did internal sutures, then glue, then steri-strips and then packaged the wound. I woke up to a whole new scar which was completely unexpected. The care at Children's was amazing! It was the best hospital experience I had ever had...and everyone was so nice and caring. I can see why it is the #1 Children's Hospital as well as the #1 Orthopedic Hospital. Dr. Millis is also the Orthopedic Professor at Harvard Medical School and Director of Children's Adolescent and Young Adult Hip Program. Most of the research articles I have found have his name on it! I am now just in the recovery process and am waiting to hear back from Dr. Millis about my MRI results and what our next steps will be. I know it will be surgery, but not sure how it will be executed.

Recovering in my room @ CHB

I have also returned to IUPUI for further education. I decided against the Master's Certificate and went for a Paralegal Certificate instead. I thought it would be better prep for law school and give me an opportunity to work in the law field and get some hands-on experience. I took the LSAT in December and am applying to law school for the fall semester. My top pick is Indiana University - Indianapolis Law School in which it will be a dual program, J.D. and Master's of Philosophy with a concentration in Bioethics and Health Law. I have continued to stay busy with school, friends and family. Chloe, my aussie pup, has also had some training and earned her Canine Good Citizen in the Fall of 2010 and we will be pursuing Therapy Dog, in which we will be able to visit hospitals!

Surgery #3 and 2 Weeks Post-Op

2010-08-25T18:40:00.000-07:00

Pre-Op w/ My bestie - Post-Op Right Scope

I am a little over 3 weeks post-op from my 3rd hip surgery. I had my right hip scoped, again, and the surgery was preformed on 10 Aug. 2010. Dr. Maiers preformed the surgery and the original plan was to do femoral head reshaping. During the surgery the plans changed because of the damage found. In addition to the femoral osteochondroplasty, I needed a labral repair and iliopsoas tendon release because the tendon was "snapping" over my hip joint, aggravating and worsening the labral tear. There was degeneration and arthritis. Dr. Maiers seemed very sombre when he gave me the news. The surgery lasted 2.5 hours, an hour longer than planned and my recovery is a lot different than anticipated. I am not allowed to bend past 90 degrees, bear more than 50% of my body weight and absolutely have no external rotation for a minimum of 4 weeks.

A week after surgery I participated in Hippie Union 2010! There was nearly half a dozen girls
involved all sharing stories, advice and new information we have found. It was a great weekend with some amazing women.

You Don't Get Use To It; You Just Get Through It...

2010-07-17T13:48:00.000-07:00

Since my last entry and a lot of information has come my way. I am scheduled for a right hip arthroscopic procedure 10 August. It is for a femoral osteochondroplasty used to correct impingement. I developed the impingement after the RPAO because of bone overgrowth and new bone position. Hopefully, reshaping the femoral will provide some relief and restore some function. When we were discussing the level of function and pain relief I may get from the surgery will be at best 80%, but more realistically in the 70% range. I was afraid to ask, but I asked if it would never be realistic to run again. Dr. Maiers told me because of how my right hip healed after the PAO and the continued pain and problems it would only have a negative effect on the joint causing more problems in the future. It is unrealistic to think that I will be at the level of activity I was prior to the RPAO. It was heartbreaking because I was told all along that I would be able to run again and it would just be a long recovery process, but I would get back to it. After the latest appointment it just feels as if all hope has faded. I love running and its been a part of me for so long that I can't imagine my life without it. On the other end, I don't want to be crippled or have a THR when I am 30.

I have been stressed a lot lately with the upcoming surgery and the bills that don't seem to stop coming. I have been applying for jobs whenever I get a chance, even if it's a part time job, anything would be helpful right now. I also am pursuing a graduate degree or two! As of right now I will be doing a Masters of Public Health Certificate this next year and will be in law school the following fall. I am taking the LSAT this October and my top choices for law school are: Indiana University-Indianapolis and University of Arkansas-Fayetteville...Go Razorbacks! It would be nice to get my JD from the same place I grew up! I would also be able to watch Razorback football games on the weekend and enjoy the beautiful Ozark scenery. There is a different air to the south. Southern hospitality, cooking, football and southern accents...I miss it! Keeping my head up and trying to keeping searching for jobs! Keeping my fingers crossed!

What's Next...

2010-07-07T07:34:00.000-07:00

Sorry for it being so long since the last post, but life has been a little crazy lately. I graduated with my Bachelors of Arts in Political Science in May. I have also applied to a graduate program at IU Medical school for a Masters of Public Health, which I found out was not accepted, but I will be in the certificate program and can reapply in 6 months. I will be doing a 15 credit hour certificate, which means I can transfer all the credits and will not have lost time. Basically, its almost like having a probationary period. That's what I get when competing for the same slots as doctors and lawyers! My older brother, Michael, is getting married in 3 weeks to his fiancée Danelle. I am so excited for them and wish them all the best.

I spent most of June at Camp Atterbury doing annual training with my National Guard Unit. It was a good time, I learned a lot, but the food sucked. It was so bad they even screwed up the fruit, which is sad because you don't do anything to fruit! I was able to train with the medics and keep up on my skills. It was really cool to put in IVs and draw blood. It pushed me outside my comfort zone and I learned a lot. I have been thinking about reclassing to medic for my Army job as well as patient administration. I am not sure what I am going to do, but I definitely have to take my hips into consideration and think about my physical limitations and long-term effects. I did get cortisone injections in both hips prior to my training and my left hip felt fantastic, but unfortunately my right hip did not get any relief. I will see my doc tomorrow and will find out if a scope will help clean it up and give me more function and relief.

I just spend Independence Day weekend in Wisconsin with family and friends and had a great time! I brought my pup Chloe with and she did great with all the new people, places, and things! She was a great travel buddy too! My parents celebrated their 30th wedding anniversary and they are going strong!

I have been training hard lately and have been getting stronger, but the hip pain is holding me back. I am proud of the fact that I was able to run 2 miles today coming in right under 22 minutes. It is about 6 minutes slower than my fastest time, but feels good to have the running shoes on!

Long Time, No Blog

2010-04-24T08:23:00.000-07:00

Well, It has been awhile since the last post and so many things in my life has happened. I graduate in only a couple short weeks, 9 May 2010. I am excited to be officially done and move on to the next phase in my life. I plan on continuing my education with a Master's of Public Health starting next fall, but I still have a lot of decisions to make. I have moved to a new apartment within the same complex and I love it. It is a little smaller, but the layout is great and its on the first floor where I can have a grill and Chloe can play in her own grassy, little backyard. The major plus is that my ex, Andrew, has not been here and there are no memories of him in my new place. I even have noticed that Chloe is happier in the new environment.

I have also had some stress in relation to my hip healing from the scope. I fell at work a few weeks ago and fortunately did not break anything, but have more than likely broke up scar tissue, tore open the capsule and/or re-tore the labral cartilage. I was looking forward to running in a couple weeks, but yet again, it has been delayed farther. It also does not help that I have developed impingement from my RPAO surgery last summer that will need to be fixed. Dr. Maiers would like me to have a break for awhile and does not want to do the surgery because it will delay training time, but I am not allowed to train injured or not fully recovered per Army regulations. That means I am going to have to have my right hip scoped asap to fix the impingement and my left possibly may need to be scoped if I tore the labral cartilage again. If the pain does not get better in the next couple weeks then I will need an MRI to determine if I re-tore the labral cartilage in my left hip. Well, this isn't stressful at all! During my last visit with Maiers I broke down from stress and he is so amazing, gave me a big hug and gave me encouraging words. It makes me feel better to know that my doc genuinely cares and will do what he can to help.

On a happy note, my older brother, Michael, and his fiancée, Danelle, are getting married 28 July 2010. From dating, to engaged, to married in about 6 months! I am so happy for them. They are perfect for eachother and I am so glad they are both in a great place in their life. Michael will also be going active duty early this fall as an Army Chaplain and I know that he will be a great assest to the Armed Forces.

Chloe will be one year old next month and I can not believe that I have had her for this long and how much she has grown. She is not much of a pup, but such a pretty little girl. I found a pic from the breeder when she was just a baby fuzz!

I can not believe how big she has gotten and what a great companion she is to have around. I just can not wait to take her running, but unfortunately it will be longer than I want. I have to be able to heal though, but it is discouraging to keep having problems/issues/setbacks.

I am happy for my friend, Jessica, who is going to be able to have her surgery 20 July with Dr. Maiers to have her femoral anteversion fixed and I will be there for her every step of the way. Her and I want to get custom shirts made that have TEAM MAIERS on the back! He is a fab doctor and he loves my GOT SCREWS? shirt, so we thought we would be creative and funny and make our own. It has been great having her as a bff, we truly are two peas in a pod...thank God for great friends and an amazing family and of course, Chloe! :)

6 Weeks Post-Op and So Very Sore...

2010-03-23T17:56:00.000-07:00

This week marks 6 weeks post-op and I am so sore. The weather is making my hips act crazy and I am hoping the warm weather stays to give me a break. Both my hips have been so sore and the more I work and the busier my schedule gets the more sore I am. I was given more exercises from my physical therapist and I wanted to scream yesterday after I got them all done. I think he might be trying to kill me, lol. I am getting anxious to run and feel normal again. I only walk with a slight limp and usually that is only when I am really sore. Dr. Maiers says I am doing great, but after asking him to run he replied "Don't even think about it!" I have about 2 more months before I can start. My hip is still raw and inflammed from the surgery and running is too much stress on it right now. I was prescribed a refill for voltaren which helps so much with the inflammation. I was called in a script for darvocet and flexeril from Dr. Scheid's office for increased right hip pain, but I hate taking narcotics so I have been managing with the voltaren, stretching and icy hot. I want to use as little medications as possible, but sometimes the pain wins the battle. My incisions sites still have not completely healed, but they are looking a lot better and each day are a little closer to being completely healed.

This surgery has been a lot easier than the RPAO and Dr. Maiers is convinced that I will NOT need a LPAO because it was borderline and the femoral osteochondroplasty brought me over the edge. I will probably pursue the right hip arthroscopy to clean up and release the iliopsoas tendon in the next few months, but both hips are so inflammed that I want that to heal a bit before adding more stress on the joints. I am very pleased with the results and am focused on recovering and looking forward to running this summer!

The World's Greatest OS!!!

These next few weeks are going to be crazy for me. There are a few birthdays to celebrate, moving to a different apartment in the same complex and graduating in May! After the dissolution of my relationship with Andrew, my dad and I have decided to move to a slightly smaller apartment within the same complex and it is also on the first floor which will be nice in case I need more surgeries, lol! I want a fresh start in a new place with no memories of Andrew and I. The apartment I currently have is about 1300 square feet and the new apartment is about 1100 square feet, which will save about $230 a month on rent and expenses. I have been purchasing new furniture for my new place and am excited for a good change and a place to call my own. We will also be able to have a grill because there is a patio, which I have cute furniture for and Chloe will be able to relax in her own little grassy backyard. Our move date is 17 April, so it is approaching quickly!

I am most excited about my commencement ceremony 9 May! I am so excited to get my first degree. I am currently in the application process for my master's and law program. I am also trying to find a full-time job in the political science arena and maybe pursue my graduate degree's part-time, so that I may gain some work experience and pay down some school loans. I have a lot of options and trying to do what is best for me and my future. Exciting times!!!

12 days Post-Op from Left Hip Scope

2010-02-23T15:24:00.000-08:00

I will be two weeks post-op on Thursday. This most recent surgery was much easier than the RPAO. The pain was not as bad as I anticipated, but also I think my pain tolerance has risen after the PAO. I was on a toradol drip over night and had to stay over night at the Methodist Medical Plaza as a precaution as well as the fact my bp fell to 85/55. I really did not want to stay, but Dr. Maiers encouraged me that it would be better if I did, so I wasn't going to argue with my OS. It really wasn't that bad, but I did have PT first thing in the morning and was released the following day by about 9am and went home to sleep the rest of the day. With all the medication I only stayed up to watch a half of the opening ceremony to the Winter Olympics. I was bummed that I missed the parade of nations. It is my own personal tradition to watch both summer and winter Olympics and all the ceremonies associated with them.

8 months post-op RPAO, 1 week post-op Left Hip Scope

The left femoral head is now round, iliopsoas tendon released and labral cartilage debrided

My first post-op visit was last Friday and my x-rays looked great! The femoral head is now round and I was feeling pretty good. The stitches were taken out, but unfortunately one of the incision sites did not close all the way and was a "hole" still left in my leg. Although the assistant trying to help told me it was only a scab and would fall off later, Dr. Maiers confirmed it was a "hole." Geez lady, I think I know what a wound is when I see one. Steri-strips were put over it, but no more than 36 hours later it was infected, even though I kept it clean and dry. I am now on antiobiotics for the next week, yeah me! Dr. Maiers believes that my left looks good enough that a LPAO would not be necessary, but it still is no guarantee. Time will tell if the surgery was successful and I will not need the LPAO. He did say however I will probably need an iliopsoas release and some tweaking on my right hip, but will hold off till everything calms down a bit.

Pre-Op pic

Post-Op pic

Jessica came with me and stayed prior to surgery and visited after! She brought treats!

My dad was there for surgery and post-op, but Mom stayed with me for the first few days.

Overall, I am satisfied with the surgery. It was not as bad as I anticipated and the damage found was not as bad as Dr. Maiers expected. It was about 2 hours overall and it did not take me hours to come out of anesthesia this time, like it usually does. I have been doing pretty well since the surgery, sore as expected, but getting around well. I can bear as much weight as comfortable, but still have to use crutches for another few weeks. I am just ready to get back into the gym and get training again. I am ready to go and run and play with Chloe!

Post-Op Incisions and Swelling

Left Hip Sugery Tomorrow...AaHhAAhhh!!!

2010-02-10T18:06:00.001-08:00

Tomorrow morning I am having my left hip scoped. My labral cartilage will be repaired, the iliopsoas tendon will be released and the femoral head reshaped. I am nervous, but trying to pass the time reading magazines and playing on the computer.

The last week and a half has been a living nightmare for me, which I would love to discuss more, but can not for the time being. I do thank all my family and friends for their love and support throughout one of the most difficult times in my life. Despite everything that has happened I know I have been truly blessed with the world's most amazing friends and family. I have needed their support now more than ever and I have a great support group.

Tomorrow begins the recovery for my left hip and I am getting nervous and I pray that my right hip does not flare up and cause any problems. I know I am in great hands because Dr. Maiers is amazing and I hope this surgery will allow me to avoid the LPAO and get me back to the lifestyle that I love.

Chloe is going to be a great rehab buddy and I am so grateful that I have her! My mom will also be staying for the weekend and I will have my "hip" girls to keep me company. I will also get to watch the 2010 Olympic Winter Games which begin Friday night! I am so excited...I love sports and the Olympics are a fav to watch!!! :) Unfortunately, it will also be the first year I am missing the ROTC military ball. I will be unable to make it because of my surgery/recovery. It sucks because it is my senior year, but I know there will be more. I hope all my fellow cadets have a great time!

I appreciate all the love, support and prayers. I have been having a difficult time lately and am grateful for my family, friends and hipchicks! I will post more after the surgery, keeping my fingers crossed that all goes well!!!

Less than 2 weeks and counting...

2010-01-29T17:59:00.000-08:00

I have just past the two week mark till my surgery and I feel like time is flying faster than I can move to get things done! The weather lately has been a bummer and my hips have been very angry at me, like I can control the weather!! I totally understand why retirees move to Florida because your body hurts way less in warmer weather lol I have been trying to make up homework and exams prior to the surgery so I won't be behind following the surgery, but my work load was already hard enough and now I have even more work. I have also been cleaning and organizing the apartment so things will be easily accesible for me post-op. I did schedule a hair appointment and mani/pedi the day before my surgery for a little pampering.

I am boarding my pup, Chloe, for about 3 days during my surgery so she can play and get her attention while I get mine. I will miss her though, she sleeps in the bed everynight and it will be very weird to not have her to cuddle with while I recover. She has a luxury suite at Barkefellers and gets to play with other dogs during the day, what a life!!! She also gets to watch movies at night and pupcorn to snack on! Its too cute!

I wish I could sneak her into my pre-op room as a service dog! I wonder if they would notice? lol She has been a blessing to have around and motivates me to recover quickly so I can play with her!

I am just getting so anxious for my surgery. I love my surgeon, Dr. Maiers, and know he will do a great job, but the pain level freaks me out and I wake up very poorly which also scares me. I don't handle anesthesia very well and take an abnormally long amount of time to wake up from it and when I do I shake uncontrollably and can't hardly breathe, which just makes me panic even more! I am also unsure of the recovery. I know, weird, I went through the PAO and that is what I was prepping myself for, but had a curveball thrown my way instead. That and I am so hoping this will be enough so that I do not need a LPAO, but trying not to get my hopes up too high just in case I still need to have it done. I am trying to keep myself mentally prepared for whatever I need to do to get back to running, being active and army training. I have been having nightmares about the surgery almost every night and its not helping with the anxiety nor is the lack of sleep. I am just ready to get this done with so that I may recover!

Surgery in 3 WEEKS!!!

2010-01-20T09:09:00.000-08:00

So, I had my appointment with Dr. Maiers this morning and I was there for almost 2 hours, but I have to say that I feel pretty good after talking with him. I had numerous x-rays and will need a ct scan in the couple weeks prior to the surgery. We discussed my options and have decided to pursue a hip arthroscopy in which Dr. Maiers will reshape my femoral head because I have "weird hip bones" and he will also do a cartilage repair and psoas tendon release. The dysplasia on my right hip has improved by ten degrees with the RPAO, but my left is borderline and doing the femoral head reshaping might be enough to avoid the LPAO, which is great! It is not a guarantee, but worth the surgery if it does provide relief. So I scheduled it and I will be having my left hip scoped 3 weeks from tomorrow morning. The surgery should take about 2.5 hours, if all goes well and I will have to use crutches for about a month, but will be allowed to bear weight as tolerated. The total recovery times is upwards of 6 months and I should be able to start running again in about 3 months if all goes accordingly to plan.

Although I am extremely nervous, I know I am in good hands with Maiers and I hope this will fix my problem. Since this is also less invasive than the PAO and might give me more options in regards to the Army. I am hoping that will give me the opportunites I have worked so hard for, but I do have to stay realistic. It is exciting to see some hope again. I was devastated when I got my MRI results Friday and Scheid shoved me off, but I feel much more re-leaved after speaking with Maiers. Hopefully I will be ready for surgery because in 3 weeks it is coming whether I like it or not!

Let it Begin...

2010-01-07T18:26:00.000-08:00

We are only a few days into the new year and I can already feel the stress. I am officially 7 months post-op tomorrow and am excited for my progress however the whole process is starting over again, but for my left hip. I saw my OS yesterday, Dr. Scheid, and I am getting an MRI arthrogram and cortisone injection next Wednesday. The type and area of pain indicate a labral tear, something that I am all too familiar with, and he might want to have it arthroscopically evaluated first, see how it heals and then pursue a the LPAO if I continue to have problems. The part that worries me is that I tore cartilage in my right hip and both the scope and PAO were done the same day. I do not have the time to scope it, wait to heal, then more than likely do the PAO afterwards because I have school and training for the army and it makes it soo difficult to work around numerous operations expecially since I have spent the last year recovering from the right. The eerie thing about it all is that exactly one year ago next week I tore my labrum and ligaments in my right hip, which started this whole journey. I know this feeling all too well and would really like to have one surgery to fix it all and move on to recovery. I have to wait for the results to figure out when I will see the doc again, but I hope and pray that it can all be done at once. I hate playing the waiting game. I am just frustrated because I have moderate dysplasia in both hips and don't understand why he is approaching the left hip differently than the right.

Also, my boyfriend, Andrew, and I are taking some time apart because we have hit a really rough patch. I feel that when it rains it pours. Although I have postitive feelings for 2010, it is not starting out how I hoped. I love him very much, but I am not sure if we are going to be able to fix the damage at this point. I physcially can not take anymore stress and I just want to feel better again. All of this makes my depression worse and these are the moments when I doubt myself and I wonder if I will ever heal, or if anything could go right. Sometimes I wonder just how much more I can take.

Fortunately, I have some amazing hippie girls that are always there for support. I am so glad to see that Sabrina, Marcie and Courtney are doing well. Shelly goes in for her RPAO tomorrow and she is all our thoughts and prayers. Shelly also got engaged! Congrats girlie! At least she has something to look forward to and plan while she recovers.

Having the girls around and talking with Jen and Marcie via email and FB has made it easier. Its nice to bounce thoughts off others and get others support. I was just shocked about how my doc has decided to approach the left hip. I had prepared myself for just the LPAO at the end of the semester, not for a possible scope, MRI, etc.

Classes start next week and I have to get a lot finished before then. I have a lot on my mind and I hope that everything will work out...

2009 Comes to a Close...Thank God!!!

2009-12-26T16:05:00.001-08:00

2009 has been both a long and interesting year. For me, it started with one of my last few semesters of school, as well as ROTC. Unknown to me, it also was going to be the start of a long recovery process. Last January I was diagnosed with moderate, bilateral hip dysplasia and was scheduled for a RPAO. It was the result of tearing ligaments and cartilage during an ROTC basketball tournament. Little did I know how involved and intense the surgery and recovery would be. As a result of that I was diagnosed with depression. My path in life has also changed. A year ago I was on the path to commission as a U.S. Army Officer in May 2010, but now will be postponed indefinitely due to the hip condition. Through my hip injury and recovery I have a new-found passion in health law and reform and am now pursuing a law degree with a Master's in Public Health. I will also be re-classing as a medic in the Indiana National Guard and will currently be staying on the enlisted side of the house.

I have also moved into a new apartment on the southside of Indianapolis, which has been a beautiful place to live. The complex is full of military personnel, so I feel right at home! I was also able to get a puppy, thanks to my boyfriend Andrew, and she has been a true blessing. She makes me smile everytime I think about her and she pushes me to heal, so that I may play more with her! She gives me kisses and loves on me and can make any day that much brighter. She has been a great part of the healing process, as well as a great companion.

My boyfriend, Andrew, has been very supportive through the healing process. Although lately we have hit a rough patch, I hope that things will be resolved and we will be better because of it. I am not sure what I will do if things do not work out, but I do not know if I can handle more sadness. I love him very much. I just don't want 2010 to start like 2009 did. I want a fresh and happy start to a new year. I am pushing for a positive outlook.

My family has been amazing. I can always count on them for advice, guidance, support and love. This year has not only been hard on me, but them as well. We have endured job loss, as well as the blessing of a new, great job for my dad. My dad is currently my roommate because of it! lol Rolls Royce is a great place for my dad to work and I greatly enjoy seeing him a lot more. My mom has been a great supporter and cheerleader for all of us. My older brother, Michael, is still pursuing Chaplaincy and is currently working in a hospital. He graduated with his Master's of Divinity; what a smart cookie! My little brother, Aaron, graduted from high school and started pursuing his career in computer technology; he is a smart cookie too! My Auntie Dena has been great support through the hip diagnosis and I can always call her just to chat!! All around, my family is very close and supportive and couldn't be more grateful. I am very blessed.

Through researching my hip condition I came in contact with other women with the same condition. This too has been a blessing. Being able to share the experience with others has been a critical part in healing. It has been wonderful to get to know some amazing women and be able to lean on and cheer on eachother. We truly understand eachother and it makes it easier to get through all that is involved with hip dysplasia. I love all the hippie girls (Marcie, Shelly, Annick, Jen, Jessica, Courtney, Sabrina & Stephanie)!!!

Jessica, Me & Shelly

This year has been full of ups and downs and lately I feel as if it has been more downs. I feel like I have been kicked over and over this year, with little room to breathe. I can not even imagine if I didn't have my family and friends where I would be. God has been looking out for me, even though this past year, I pushed him away in anger, he just hugged tighter and made sure I was taken care of. He is an amazing God. I realize how much I need him in my life and that nothing is possible without him! I am renewing my relationship with Christ and have learned through my trials and tribulations that he is always there for you, even when you push him away.

This year has been nothing short of challenging and has tested me in every aspect of my life. I feel as if I have failed at times, but then I realize that I am still standing and still pushing. I look forward to a new year, new resolutions, new experiences and new relationships/friendships, as well as completing my undergraduate degree and pursuing graduate school!!! I am ready 2010!!!

Only if our doc could see us now...he would probably cringe!!! LOL

6 Months Post-op!!!

2009-12-08T19:26:00.000-08:00

Today I am 6 months post-op. I also reached another milestone; being able to do 35 minutes on the elliptical. It has been such an accomplishment, but there has been many battles along the way. I think about where I was 6 months ago tonight. I was just out of surgery, recovering from a long surgery and beginning the recovery process. Its hard to think that I am already 6 months into my recovery. I can not seriously start thinking about doing the other hip.

Today, my hip friend Marcie, had her surgery and she begins the recovery process. I have quite a few hip friends that will be having surgery here shortly: Courtney, Sabrina, Jessica and Shelly will all be having their hip surgeries in the next month or so. Sooner than they think they will be 6 months post-op and astonished at all the progress they have made. I am going to be there for them through all the ups and downs. It is a hard process, but I do believe it will all be worth it when fully healed!

The more I keep pushing myself the more I ache. I guess that is part of the recovery process. My muscles have not been worked like this in awhile and they are readjusting to the routine. It is so nice to be in the gym on a regular basis again! I am starting to drop the weight. I gained a total of 20lbs. and about 12 inches throughout my body. So far, I have lost about 5 lbs and 6 inches from my body. I am starting to fit back into my clothes, but still have a ways to go. It feels good to see progress. It was such a bummer to gain weight on top of the hip problem :( I really don't think gaining 20 lbs was helping my hip problem either. Well on that note, neither is this crappy weather. My other hip is also acting up and I get nervous thinking about doing this process all over again. This time I am better prepared and know what to expect. It still doesn't make it easy, but I have a lot of support to help me through the recovery.

I am looking forward to the holidays and spending it with family. The only thing in my way right now is a week of final exams. BOO! I am having a movie night this Friday to spend some time with the hip girls! I am looking forward to it. Good food, great friends and some entertainment too! Last week, we got together at the Olive Garden and were there for about 4 hours laughing and having a ball. Our waiter left before we did! LOL I am so grateful to have these amazing women in my life!

Approaching 6 Months Post-Op

2009-11-29T08:02:00.000-08:00

In another week or so I will be 6 months post-op from my RPAO. I have been gaining some more strength and endurance. I have been able to do 25 minutes on the ellipitcal without stopping. As I look back and realize how much of an accomplishment that really is, I still know that I have a ways to go. I still have pain in my hip and my left hip has been bothering me more and more. I am still not aloowed to work "through the pain" because I have a stress fracture that is healing along with the surgical sites. I am discouraged because I have gained about 15 lbs since the surgery and am having difficulty dropping the pounds. I am hoping as I continue to eat healthy and am able to more cardio and weights I will be able to drop the weight. It is just not fun to have a hip problem and gain weight too. Boo :(

I have been blessed with the ability to meet other hippie girls in the Indy area. They truly are amazing women! They tell me how encouraging I am to talk with prior to their surgeries, but listening to them encourages me. Not only was I able to go through my recovery with Stephanie, but I now regularly speak with Jessica, Courtney, Shelly and Sabrina. There are also a couple ladies I speak with from out of town, Jennifer and Marcie. It has been a blessing to have things like facebook and hipwomen to be able to stay in contact with other hippies. It is amazing to be able to speak with others who understand what you are going through. It is always nice to have a shoulder to lean on. These other women have amazing strength and charisma that raise my spirits and give me a renewed strength; that we are not alone and will get through this! I thank God for being able to meet and speak with all of them. It has been a real blessing.

I have been seriously contemplating having my left hip done next summer. I do not want it to get nearly as bad or painful as my right one had before having it fixed. Also, while I am still covered on my parents insurance plan, which is a great plan, I want to take the opportunity while I still have it. I have looked at getting my own plan, but they would not cover the PAO for a significant period of time and the price is not afforadable. I am going to be in a Master's Program next fall, so I still am eligible under my parents plan, so I want to take advantage of the insurance plan while I can. I am trying to prepare myself because my left hip has been acting up and the symptoms are similar to my right when it began to bother me. I would just like to get them both done and overwith, heal and move on!

I am hoping for a great holiday this winter. I will be making a lot of visits to Methodist Hospital to visit my hippie girls recovering from their surgeries and I will be spending a lot of time with my family and friends enjoying good food and great company. I am very excited to be finishing up my fall semester and beginning my last semester of my undergraduate degree. This year has been very challenging with many struggles, but there has been many great moments as well as being blessed with many new friends!

Sometimes I Just Don't Understand

2009-11-13T16:26:00.000-08:00

Well, lately has been a roller coaster of events, emotions and stress. I am coming to the end of my fall semester of my senior year, which is exciting, as well as applying for graduate school. On another note, it looks as if this will be my last semester with ROTC. I spoke with my commander and we are submitting my medical packet for determination of my status, but we already know what the answer is going to be...I am going to be disenrolled and return to my enlisted rank. My heart feels so broken because I get all the way through the program and fail to receive my gold bar. I feel like I my hard work is never good enough, as if the problem with the hip wasn't bad enough, my goals are falling apart as well. However, it does look like I may be bable to pursue a different commissioning avenue, but it will have to be another year or two to allow enough time to properly heal. I haven't really voiced anything to my friends yet, nor my peers. I am not sure how to say it, because I am afraid of breaking into tears. I couldn't help the tears while speaking with my commander, its been so disappointing and I feel as if I can not win. Fortunately, my commander has been supportive and has done anything in his power to help and work with me through this situation. I am truly grateful for that. It has at least made the transition easier, as well I will be able to leave on a positive note and with recommendations for commissioning at a later time.

These last few weeks have been so draining, but I have been able to find renewed strength in my hippie friends. I have been able to meet with some amazing young women (Jessica, Shelly, Courtney) who are gearing up for their hip surgeries in the next few weeks. It is a blessing to be able to speak with others who completely understand what you are going through. It is nice to be able to vent and even joke about the experiences that we have had. We can joke around that we are really part german shepherd and larbrador retreiver. lol It has been nice to have some new friends that don't think you are nuts or are faking it. Can't believe it, but some people just think you are faking it for attention, no joke! Its great to be able to lean on others and not take the journey alone.

I have been doing my best to lose the weight I gained after the surgery, but it has to be one of the biggest pains. I watch what I eat, drink plenty of water, but my exercise limitations make it difficults to drop the lb's. I have to be very careful not to work through pain, which makes my workout routines sporadic. When I get worn down, I hurt more and then can not exercise. It adds to the frustration because I would love to be able to work out some frustration, but I can't screw with the healing process.

On a good note, my pup, Chloe, is such a joy to have aorund. Her excitement and enthusiasm is contagious. She is always excited to see you and makes a great cuddle buddy :)

Stressed Hippie

2009-10-30T19:32:00.000-07:00

I received the results from my ct scan at the beginning of the week...you know something is not right when you are called first thing Monday morning, when your scan was Friday and the message starts with "the doctor looked at the scan over the weekend" and all I was thinking was Oh Shit! I knew something wasn't right. The message continued with "the doc looked at the scan and believes that you have a stress fracture." Great, one more thing to deal with. On the bright side I did not have any larbral or ligament tears, so I just need more time to heal.

Next, I thought how did I sustain a fracture? I haven't been doing anything that the doctor hasn't approved. I have been doing physical therapy, stretching, resting with more pain and not trying to push my luck. I just feel that I have terrible luck or for a matter of fact, no luck at all. With the fracture news I am even more cautious to the point of paranoia that I am going to do something and my hip will shatter. I have been taking calcium supplements and have been doing anything I can to help heal. Maybe my body just heals slower. I just am afraid of ruining the surgery or having to start over. Another part of me thinks "will I ever heal?" "Will I have pain everyday?"

It is very frustrating to feel that I will never heal or that things are getting worse rather than better. I also have to remind myself that this was a major surgery and that it is going to take a long time to heal. I guess I am just going to have to swim more! I have been looking into a fitness membership at a gym with a pool and maybe some spinning and aquatic classes. I need to find some other motivation because running is going to be a lot farther down the rode. This is a long journey...just keep pushing!

A Hip Scan

2009-10-25T19:02:00.000-07:00

I am anxiously awaiting the results of my CT Scan that I had this past Friday morning. Surprisingly, the can was very short compared to having an MRI. It only took a few minutes, but I am very nervous about the results because the tech did the same thing they did the last time I had tests run. He asked if my doctor's office would be in contact with me and it was said with some concern in his voice and it reminded me of the similar response the tech had with my MRI results which is what started this hip journey. Its this bad feeling you get in the pit of your stomach, that you know something doesn't feel right and thats how I feel right now. I am keeping my fingers crossed that its just inflamed and nothing serious, but I haven't had good luck with this.

This past week however, I met with a wonderful individual by the name of Courtney Vogel. She too is a hippie and we are patients of the same OS, Dr. Scheid. We had grabbed some food and discussed PAO because she will be undergoing a PAO December 11, 2009. I was able to get her in contact with another friend, Sabrina, who will be undergoing the same surgery 4 days after her. It is nice, despite the circumstances, to have friends that understand exactly what you are going through, Stephanie and I gained a friendship through this hardship and were ablt to motivate eachother through the process. I hope that Sabrina and Courtney will be able to do that for eachother. Steph had her surgery one day after mine and it was great because we were able to check up on eachother and motivate eachother through the recovery process. It was truly an answered prayer.

I have been having an inkling to have PAO shirts made with the pack of the shirt having the letter PAO airbrushed into a greek-house type lettering with hip on the front of the shirt. I feel as if we are part of a unique sisterhood and the shirts would be entertaining and rightfully earned through lots of blood, pain and tears. I might just show up at the hospital with shirts for Courtney and Sabrina, of course, Steph and I need definitely need one!!!

So...

2009-10-09T17:12:00.000-07:00

Well, this past week I not only surpassed the 4 month mark of post RPAO. I also found out some interesting information from my OS. The appointment went alright, I do have a muscle that has detached from the hip bone, which is why I have noticed a "dent" in my right hip. I also might need a CT scan to determine the increased pain level I have been experiencing recently. We are hoping that the muscle relaxers and the Celebrex will help ease the discomfort. If the pain improves on the meds the CT scan might not be necessary. It wasn't the most uplifting visits and I hope that nothing is seriously wrong with the recovery.

After my post-op appointment I had a physical therapy session. I asked my therapist a question in regards to my recovery because I saw a diagnosis of osteoarthritis in my records from my OS and I asked if running is possible or recommended with osteoarthritis and the response was NO, it is not recommended. He also said to speak with my OS, which I definitely will because that is very upsetting to me. I had always kept getting back into running in the back of my mind and hearing that was crushing. After all this, I was so looking forward to pounding the pavement and as of right now, it is out of the question. I feel like part of me is missing when I am not running and never being able to do it again is heartbreaking. When do you keep pushing the limit? When do you just take the advice of the medical professionals and follow the rules? People are told things are impossible all the time and overcome them, but when do you know when to keep fighting? I feel like part of my heart is crushed.

The farther I get into the recovery the more it becomes clear that the Army is no longer for me. I am just hoping at this point to get back to a somewhat "normal" place. This has been a rough week and thinking about all the things you love being taken away or not being possible has been difficult. It gets even harder when I think about doing this all over again...

This Week Marks 4 Months Post-Op

2009-10-04T06:05:00.000-07:00

I see my OS this Thursday for my 4 month post-op check-up. I have been more sore than normal lately and I am sure the changing weather is partially to blame. My hip has this deep sore and raw feeling that can be frustrating and discouraging at times. I have also been getting muscles spasms lately and the muscles relaxers I was prescribed don't seem to be relaxing enough. Ironic isn't it? I have been trying to get my core muscles back into shape by doing pilates and stretching...it seems to be helping to an extent, but I still have so far to go. I picked up a new pair of running shoes this week, the Asics Gel-Kinsei 3, and they are sitting in my closet in hopes of being able to lace them up in the next couple months. I can't wait to pound the pavement and take the pup out for a good run. I bought them as motivation to keep pushing towards running again.

As of right now, I have little to no motivation to continue on with the Army and I hope that I can get a medical discharge and can move on. I am currently applying for a master's program with a degree in public health and that is what I would like to be doing as of next fall. I am also going to take the LSAT this December because ultimately I would like to be in the dual grad program which would combine my masters with a law degree. I would specialize in health law and policy. I feel that is where my heart has been drawn to. I have been broken by the Army and I don't want to jeopardize a lifetime of problems for a "job." I have put so much into the Army and I feel that when I was hurt there was no one there to back me up. I don't want to continue with it anymore.

This week the nurse of my OS got in contact with my hip friend, Stephanie, and she passed on the message that another PAO patient was looking for advice and someone to chat with in regards to hip dysplasia. Steph and I have been trying to come up with good advice and things to keep in mind. It is nice to be able to share my experience with others and I am so glad that it aides in others journeys. It is what has motivated me to pursue a career in public health. I would like to put a PAO group together and be able to get together and share stories, experiences, and just have fun!

Wanting to Run

2009-09-20T07:08:00.000-07:00

I have about one more week left on my cane and as the weather begins to cool off my desire to go for a run goes into overtime. I want to just take off in a sprint with my pup and just run and play and act as if nothing was ever wrong with my hip. But, I have awhile before I will be able to run. My strength and endurance when walking Chloe has been getting better and I am getting less sore after long walks with her. I am able to walk with her for about 40 minutes with some soreness towards the end of the walk. It is a slow process but I can see more strength coming back. I still have a limp when I walk and I pain is an everyday thing, but I feel that I am making progress, even if it is slow. Lately, I have felt as if I have hit a rehab plateau. Everyday for the first few weeks progress seems significant, but now it seems as if progress takes much longer to see results.

I am beginning to feel more "normal" although my scar reminds me of all the things I have gone through with this surgery. I have residual swelling that makes it uncomfortable to wear jeans and clothes I loved to wear prior to the surgery. It doesn't help that I have gained about 7 pounds since the surgery, but I am doing my best to find alternative ways to stay in shape and I have had to curtail the sweets and stick to healthier foods. It is so easy to munch on sweets and sit on the couch, when that is all you have been doing for months, while bones heal. Jokingly, I think my doc made my hips bigger when he was fixing my hip socket. lo

Classes are under way and I definitely notice how tired I am after a long day of classes and being on my feet for an extended period of time. I didn't realize how little endurance I have left and how long it takes to build it up again. I have learned that this is a process to take day by day.

Things are Looking Up...

2009-09-08T05:13:00.000-07:00

Sometimes when you think that things can not get any worse...they actually get better. Thanks for all the prayers, my dad was hired at Rolls Royce, Indianapolis, the aeronautics company. It pays better than the previous job and it looks like a possibility that my parents would be moving to Indy! I am so proud of my dad. This job looks like it will have many great opportunities. The only reason the position opened up was because the man who held the position was retiring after working there for 19 YEARS! I have always believed that everything happens for a reason, whether or not you may understand the reason at the time, there is a purpose none the less.

It also means as of 1 October we have health insurance! That is such a stress relief because the army paperwork is a giant fiasco right now and I was unable to get my own policy due to my hip being a "pre-existing condition." Boo...let health care reform begin! I did say reform, not socialized medicine! Throughout my hip experience I have gained a passion for health law and pursuing a career in that professional field. Like I said, things do happen for a reason.

As I get farther and farther out from my surgery, which I believe is 13 weeks today, I get stronger, but I also deal with the frustration that I am not "healed enough" to do what I want. I am so itching for a good run and it would be great to take the pup with me. Hopefully in the next 2 months I will be able to pound the pavement.

Thank you everyone for the prayers!

The Flames Make Me Look Fast

2009-08-29T17:48:00.000-07:00

I just had my 3 month post-op on Thursday with Dr. Scheid and silly me thought I was going to be able to be done with the crutches all together, instead I have an additional four more weeks with a cane. I am looking it as if Dr. House can make it look cool, so can I. I have even attempted to find flame stickers so it looks like I am going fast lol. I am such a big fan of House and now I have something in common with him :) The doc told me that he can still see with the bones are healing and I need additional time to allow them to heal. It aggrevates me because I can not make the bones grow faster and just because I am young and otherwise healthy, it has nothing to do with how fast or well my body heals. It is a discouraging to know that I am not healing as expected and further delays my time to get back into ROTC and training. I was hoping to be able to start running in another month, but that is pushed back as well. However, I am allowed to start horseback riding again, but just trail riding; nothing too crazy yet.

It makes me feel a little better to be able to go riding, but I feel like one step forward two steps back. I was hoping to be done with crutches and running in a few weeks, but I am looking at a couple more months instead.

ROTC has begun and I have no motivation to be there and I feel that I just got screwed over in more ways than one. I like our new colonel, his name is Thomas Rude and don't let the last name fool you because he is such a nice and upbeat person to be around. I feel that he truly cares and wants us to learn. I am hoping this year turns out differently. I pray that it turns out differently.

11 Weeks Post-Op

2009-08-24T16:48:00.000-07:00

Today, I am 11 weeks post-op. Also, I am officially done with my crutches today! I will continue to use at least one crutch for the next couple of weeks while on campus because I am not use to long distances yet. It feels so strange to step outside without having to use crutches. My hip is still sore and the muscles are weak, but I am able to get around pretty decently. I have a limp, not totally from pain, but from lack of muscle strength. It does feel nice to be transitioning to the next phase of recovery. I was able to take my puppy for a walk and it felt great!

School starts the day after tomorrow and ROTC activity has already started. I am still apprehensive in regards to continuing in the program, but I am going to see if this year will be different. I also have formally decided to take the LSAT this December and pursue a law degree with a concentration in health law. After dealing with hip dysplasia I want to make sure that world-leading health care stays in this country and no government will be able to tell us what can or can not be treated. It is not going to happen in my lifetime. I want to help reform health care, not nationalize it...

I have started thinking about having my left hip fixed next summer. I just want to have them both fixed and be done and over with it for awhile. I also want to have it fix before Obama screws up health care and getting my hip fixed won't be "necessary." I am terrified if national health care is passed I will have to live with the hip problem and won't have the ability to get ift fixed or have the excellent quality of health care.

I am praying for my dad. He has a job interview at Rolls Royce (aeronautics) company this Wednesday. I pray that this is where he is led and that it will be a great opportunity for my dad and mom. The job would be here in Indy! Keep praying!

Summer Days Drifting Away...

2009-08-12T07:59:00.000-07:00

I am a little over 2 months post-op, 9 weeks to be exact and I have about 2 more weeks before fall classes commence. I just celebrated my 22nd birthday with family and friends and will be down to only one crutch next week. I realize that I have made a lot of progress, but I do understand that I have a long ways to go. I am also freaked out by the fact my left hip hurts worse than my right, which was just surgically fixed. Part of me wants to do the second surgery and be done with all of this, but another part of me doesn't even want to think about it.

Lately I feel I have been struggling with relationships, empathizing with others, and felt down. I feel as if I am on edge all the time. I am not sure if part of the blame can be laid on the oh-so wonderful narcotics that I take to sleep, etc. I haven't been sleeping well because I can not seem to get comfortable. Part of me is just tired and I realize I lack patience, but it will get better with time. You don't realize the toll a process likes this takes on your mind and body. I understand those around me can not focus all of their attention on my problem, but I have not asked of that either. I just want people to understand that this is not easy for me and to give me space to let me heal and let me do things on my own. I am starting to be able to do more and I try to swim, but endurance and strength is not their yet and my stress release (running) has been non-existant for months. I know my parents are going through alot, dealing with job-loss, etc., but for me it is compounding an already difficult experience. I am doing my best to financially help my little brother with school, apartment expenses, etc., and I just feel unappreciated. The only things I asked of him in return was to help me take my new puppy out to walk and potty and to help with chores around the apartment. I have to fight tooth and nail for help and my brothers act as if I can do this all myself and its my fault that I am in the situation becuase I should have waited for the dog. I just don't understand why helping is so difficult. If someone helps you out and you agree to help in return, then why do I need to fight to get it? I know, I know, I am venting and appreciate the space to do so! I think brothers can be sooo frustrating!

I can not believe how fast/slow this summer has gone. I look back at the beginning of the summer and was waiting for this surgery and now I am a couple weeks away from getting off crutches. I am looking forward to the fall semester beginning, but I am apprehensive on how ROTC will work out this year. By no means do I want a repeat of last year. I appealed my last semester's grade and I am going to fight for what I want to do. If I don't do it, who else will!? I am going to do my best to enjoy the last weeks of summer vacation that I have left!

Another point of nervousness for me is that my other hip has been hurting consistently and at times more than my right. I had been afraid of this situation and I am hoping that it doesn't detoriate as quickly as my right one did. I want to be pain free and part of me just wants the other one fixed as well!

My dad unfortunately did not get the job at Purdue University. I am very sorry that this has happened and that my parents and family have to go through this process yet again. It is very difficult, stressful, etc. I pray that this unemployment period does not last long. My parents have worked very hard and it is distressful to see them in this postition. Keep praying that something will work out soon!

Tired of Being Tired

2009-08-04T15:55:00.000-07:00

I am a little over 2 months post-op and I can truly say that I am tired of being tired. It takes so much energy to just do the little things (grocery shopping, cleaning, laundry, etc.) and then I have no energy left to do my therapy exercises or go bike and swim. Of course, my new puppy Chloe brings excitement and joy, but also a lot of work. I had to run to campus yesterday to submit some paperwork with the VA rep as well as get a parking pass, then had to go pick up some last minute grocery items and by the time I was ready for bed I was exhausted. To top it all off I can not seem to really sleep. I toss and turn, well kind of because it is hard to find a comfortable position to sleep in. I love to sleep on my side all curled up, but it hurts too much to be in that position for very long. I would love to be able to sleep through the entire night comfortably. I hope in time that I will get back to a normal routine.

There are days where I feel pretty good and the pain is under control, but I realize how limited I still am when I look at those around me. I am pretty good with getting around my appartment without really using my crutches, even though I am suppose to, but it is usually only a few steps. I can't walk any kind of distance without crutches and definitely can not get up and down stairs without them. My leg is still very weak and it is hard when there is so many things that I want to, but I know I am still very limited.

I go back to see the doc tomorrow to recheck the progress of my healing wound. It definitely looks better, but is not completely healed yet even though I am 2 months post-op. I hope the appointment goes well and that I will have more good news. On another note, I am praying that my Dad will get news tomorrow that he got the job at Purdue. Keep praying everyone!

2 Months Post-Op

2009-08-03T14:48:00.000-07:00

I am slowly getting farther and farther into my recovery. Today, I am 2 months post-op and can bear 75 lbs on my operated hip. In a few more weeks I will be off crutches and back into my active lifestyle. The only downside recently is in addition to the pain of my newly-fixed hip, my left hip has been very sore recently. That frightens me because I do not want to even think about a second surgery yet. I am sure part of the stress comes from having to compensate for so long. I have been looking into different health care options because of the loss of my dad's job, therefore, the benefits as well. Cobra is too expensive with not having a large enough income. I am looking into the Army's TriCare program, but I am not sure if they will cover my doctor or that the fact my hip is a "pre-existing condition" but I am going to try anyway.

I have been anxious about returning to school and the ROTC program, but after I spoke with the new colonel I feel just a bit better. He seems down-to-earth and was friendly as well as understanding. I hope that this year will be a better year. I completed my first drill since before my surgery and it definitely made for a long a weekend. It was not a hard weekend, but i was up early and moving most of the day. I had to up the dosage of pain killers for a couple nights. In a few days I will be able to take it back down. This week has been long with moving back into my apartment, having drill and getting my little brother and new puppy setttled in. I am getting better, but it is a slow process and I still have a long ways to go...

7 Weeks Post-Op

2009-07-27T10:05:00.000-07:00

Today is 7 weeks post-op for me and I am feeling pretty good. I had physical therapy today and have finally been allowed to progress out of the pool to some land-based strength training exercises. It feels good to be able to bear weight on my leg, even if it is only 50 lbs. Even though I am progressing it is hard to feel discouraged when you realize you still have another 6 weeks on crutches and a couple months till you are walking like a normal person without assistance. I just want to be able to walk my new puppy. I want to be able to run around, shop, do chores, without the assistance of crutches. They definitely get old after awhile.

On a more positive note, my dad has an interview with Purdue University today and I am praying and hoping that he gets this job. I think it would have a lot of good opportunities and would be a better working environment. Just keep it in your prayers that this works out. This is never an easy process and for me this has been scary with the hip recovery and losing health insurance and by all means I am not for national health care proposed by President Obama. That is not the answer either. I am working with the hospital and payment plans to pay the bills as well as putting my therapy on a payment plan as well so that I can continue with my therapy and continue to progress.

Going through this surgery and recovery has motivated me to pursue a degree in the health field as well as pursue public health and health law. I am a supporter of a conservative patients rights organization that is for better health care, not national health care. Health advovcacy has become a passion and I have first-hand experience and would like to be able to affect the future of American health care. Through difficult situations, God has a way of teaching you and guiding you down different paths.

Weight-Training

2009-07-24T09:51:00.000-07:00

So, this past week I had my 6 week post-op visit with Dr. Scheid. The appointment went fantastic and I even get to start bearing weight on my leg starting with 25 lbs and adding 25 each week. It is a good feeling to be taking the next step to walking and running again. I also got the go ahead to bike and swim as much as my heart desires which includes adding some resistance! I can also start to lift weights for my quads and hamstrings to build strength, as well as do ab workouts. I am excited to be able to increase my therapy regimen and I have missed being able to workout, so being able to swim and bike will be nice to release some stress and energy.

There was a small negative at the appointment in regards to the healing of the wound. A small section of my wound has not healed and while I should have called earlier about it, I didn't think about it because it didn't look infected and was slowly looking better. I have to do what is called a wet-to-dry dressing twice a day till I see him again in 2 weeks. I have to go for an additional check-up to check on the progress of the wound healing. It is only a small set back, but it already it starting to look a lot better.

I love having the new puppy around, even if she does wake me up way to early in the morning lol. I am looking forward to being able to take her on walks this fall and run with her outside. It is a definite motivation to continue and push my progress in therapy.

I will be back down to my apartment in less than a week and it feels good to be able to drive and get back to where I was prior to the surgery. I just hope that my dad is able to find a job soon, so I can continue therapy. I worry about my family and my mom has taken the recent job loss hard. I know that eventually everything will work out, but it is a stressful situation. My dad does have a lead working at Purdue University and I think it could open many doors and allow him to not only get his Ph.D., but possible teach more than he already does! I am keeping it in my prayers and I feel like this could be a much better job than his previous job at Toyota. I feel bad because the surgical costs are so expensive and physically I can not help out around my parents house as I would like, but things will get better, it just may take some time.

6 Weeks Post-Op

2009-07-20T14:53:00.000-07:00

WOW! I can not believe today is 6 weeks post-op. I have been swimming and have increased my time in the pool and the therapy clinic. I feel a lot stronger, but I have to be careful as I try to ditch my crutches and use my operated leg. It does not feel to bad, but I am unsure if the bones have healed enough. I see my doc for a 6-week post-op this Wednesday and I will get to find out how well the bones are healing and whether or not I get to progress to more exercises, get to drive or hopefully ditch a crutch! That is wishful thinking and I am not trying to rush the process, but I am hoping I am healing well.

This has been very difficult and has just gotten even more difficult. My dad was just laid-off from his job at Toyota and the health insurance ends this month. I am unsure of how my therapy will continue after the next couple weeks. It is a terrifying situation to be in and I just pray for my family because this is not going to be easy. I am unsure of what this is going to bring. I just hope that I can afford the rest of the therapy needed to get back to work. The Army requires a big physical demand and I if I do not recover...I have no job and I can be released from my ROTC program as well as owe them the money from my tuition and stipends. It is a scary thought of what ifs...I am trying to stay busy and work on alternative options and sources for recovery while still helping out my family as much as I can. I know my family is worried, stressed and angry that this has happened. I just hope this is a short process and that we can get through this. I hate seeing my family hurting and would do anything to change that.

I have had a recent joy that brings happiness in this stressful situation. Her name is Chloe! She is my new mini Aussie Shepherd. She brings laughter and love to the family. Please pray for my family...I am worried...

5 Weeks Post-Op

2009-07-13T07:34:00.001-07:00

Today is 5 weeks from my RPAO. I can not believe how far I have come, but yet there is still so much yet to do! I am able to do more and more each day and I am slowly regaining muscle strength, but I still have a few more weeks of no weight-bearing, which makes it difficult to regain strength. There are many things I can do which include:

Taking a shower/cleaning up by myself
Being able to pick up my leg and get into/out of the car by myself
Crutch fairly long distances lol :)
Get dressed without help, which includes getting shoes on and off!
Creatively carry things with my crutches ;)
Take only a few painkillers a day
Sleep with only waking up once during the night - Thank God!
Mastered stairs on my cool crutches
Regained some flexibility in my hip (I can move it laterally, pick up my knee like marching, almost kick my butt with my foot, etc...)

I am still swimming about once a week, which helps with range of motion and flexibility and this past week I started biking without resistance. I did a total of about 4 minutes without pain or any problems. The recovery is definitely a slow process, but I can see progress. The thing I can't wait to do most is get back to driving my car. I miss being able to take myself places and feel fully independent.

Also, this week brings a lot of happiness because I am getting a Mini Australian Shepherd, Chloe. She was born on 25 May 2009 and is only about 6 weeks old. She is black and white and will be the new addition to the household. I truly think she will help in my recovery as motivation to be able to play with her and something else to focus my attention on. I am very excited!

I have had a lot of doubts over the past few weeks, but I want to allow myself to recover before making any decisions in regards to my future in the Army. I just want to be at peace with whatever path it leads me. This has not been an easy journey and I have a long way to go, but I have also come along way in these past few weeks.

4 Weeks Post-Op

2009-07-06T15:38:00.001-07:00

Time has been flying by and I am now 4 weeks post-op from my PAO. I just returned from a weekend in Wisconsin for the Fourth of July and I was pleasantly surprised to see how well I was able to get around. I was very tired after a day at the relatives, walking around, etc., but it was a great weekend to spend with the family. I am finally able to take a shower by myself with only help carrying towels into the bathroom. It is so nice to have that time to myself and not need someone else, my Mom, to help me bathe. I am becoming a pro at getting in and out of the car and am actually able to get my op-leg into the car without using my hands to help lift it. It is the small accomplishments that feel so good. I have also been able to downgrade the dosage and usage of the painkillers. I still need them, but only take them a few times a day. I am slowly weening myelf off the meds and hopefully in a few more weeks I will be cleared to drive! I do miss my wonderful SUV and my new apartment.

One of my MSG's called to check up on me and I didn't answer the call because I have lost so much respect for him. He has told me in the past that "life is not fair" even though he is in a position to affect change and basically told me that I was "weak" and to not cause "drama" after I have been dragged through the mud by my cadre, him included. Part of me is not looking forward to coming back to my ROTC program this fall because of everything I have been through, but part of me just wants to stick it to those who told me I couldn't make it. I am looking forward to our new commander in hopes that he will be more realistic in his advice and leadership style. At least I can look at him as a fresh start with a new commander.

This year is going to pose many challenges. I have a large coarse load, as well as my rehab from the surgery. It will take many months to regain my strength and endurance and I am greatly looking forward to my first run in many months. I will also have to be able to get back to a preformance level fit for an Army career. The requirements are more than just a weekend athlete, but I will do my best to be back better than before the surgery. I just pray that I will not have to a left PAO for awhile, but I try not to think about that and just focus on my current recovery. I still have almost 2 months before classes resume for the fall and I am hoping that it will allow me to regain some strength before my crazy schedule begins. I wish everyone going through this a great recovery! It is no easy path...

3 Weeks Post-Op

2009-06-29T17:46:00.000-07:00

Three weeks ago today I would have barely been through the first 12 hours after the surgery and now I am getting around on my crutches, going to swim therapy, and can slowly get dressed on my own. I still can't get in and out of the shower without help, which I believe is the most frustrating part. I hate not being able to take care of myself without help. My PAO friend Stephanie has been through this process already and she reassures me that there is light at the end of the tunnel. She also admits that it is a daily battle of thoughts if you can make it through, did you make the right decision, etc. I guess this process is normal, but some days are much worse than others. Days like today, where I got to swim and actually felt normal for the first time in a long time, I feel great, but other days I wonder if I can make it, did I make the right decision, will I ever be back to where I was? I will only know these answers in time.

There are so many days that I struggle with my decision or the reality that I will have to do this surgery again on my left hip. I know God has a plan for me and that somehow this will fit into the plan, but I just can't see it right now. I have struggled over the last year dealing with this problem and the ramifications it had on my Army training. It was hard to stand by and watch as my class moved on, as well as have been punished for the fact I was injured. It was hard hearing what others had to say in regards to my condition, such as it's my fault that I am in this situation and that if I don't recover, it too is my fault. Without a shadow of a doubt, I don't want to let those individuals win by me leaving the program, but part of me also does not want to continue in those surroundings or cause permanent harm to my body. These things I have definitely thought about throughout my recovery, because you have no option but to sit and think. In time these concerns/issues will be worked out and figured out, but it is going to take time. I just hope whatever that may be that I will be happy and fully recovered.

Two Weeks Post-Op

2009-06-22T17:45:00.000-07:00

Today, I am officially two weeks out from my RPAO. It seems as if the last couple weeks have gone by both fast and slow. I look back at where I was even a week ago and I have made huge improvements, but there is still so much I can not do yet. I am most frustrated by the fact that I can not take a shower without help. I think once I can at least get myself ready I will feel better. It is just hard because I have to rely so much on others and I will have to until I get through the healing process.

This week I start hydrotherapy and get to bike without resistance. At least, I will be able to get out of the house for therapy three times a week for the next few weeks until I can bare weight on my leg. Also, I plan on going up to Wisconsin for the Fourth of July, which gives me a goal to work for in regards to recovery and physical therapy. I will be able to relax by the lake, enjoy friends & family and lots of good food!

It has been hard lately, especially the last few days have been frustrating, but I am able to do more and more. There are days where I wonder if I made the right decision, or think if I can make it through all this and there are others where I feel that the scar is not so bad or that I am progressing well. I am just trying to take it day by day...

PAO Friends

2009-06-18T09:18:00.001-07:00

Yesterday I had my first post-op visit to get new x-rays, staples/stitches removed and an update on progress from the doc. Everything went great! Progressing well and I am very pleased, as well as my doc.

While I was waiting to get my x-rays I noticed another girl getting wheeled out of the x-ray room wearing similar clothing to me (knee-high TED stockings, shorts, t-shirt, etc.) and I had to ask if she too was a patient of Dr. Scheid. She turned around and responded "yeah." I asked if she too just had a PAO, realizing that she was the girl the nurse was talking about that had her surgery the day after mine. Her name is Stephanie and she is a Depauw student and dancer. We had both been researching and reading blogs for years, never meeting anyone with the same problem and in a matter of a day we had a new friendship through our circumstances. We immediately exchanged contact information to stay in touch. I must say that prayers are answered in different ways.

We have many similarities including what we do upon graduation (PA School), being active college girls, sports, etc. It is interesting how you form friendships with people, but I have to say it is soo nice to have someone that you can relate too. Someone who understands completely what you are going through because they have gone through it as well. It definitely made my day meeting her. I hope others going through this can find someone to share their experiences with or can find support through the many blogs dedicated to dysplasia.

One Week Post-OP

2009-06-15T19:39:00.001-07:00

I am officially one week post-op today and would have never imagined the progress I have made in only one week. I was terrified for the surgery and what was to come, but I am taking it in strides. Each day gets a little easier to get around. I am able to eat at the dinner table, in my wheelchair, with the rest of the family. I am getting better and better on my crutches, but still have problems standing for long periods of time and have to constantly changes positions when sitting to maintain some level of comfort. I wake up several times during the night, but am able to nap during the day when I am tired. I will take sleep when I can get it!

The pain isn't nearly what I anticipated, but it is still significant...no sudden movements and getting in and out of chairs, etc., takes a little time, but progressing well. I am looking forward to being able to swim in a couple of weeks, which will feel like a little bit of freedom. I see the doc on Wednesday to get my sutures/staples removed, x-rays, and see how my progress is going. He expects that I will make a full recovery and I am just doing my best to get there, no matter what it takes! It has not been easy and I don't expect it to get easier, but I do know what I want and what it will take to get there!

Back From the Hospital

2009-06-12T17:45:00.000-07:00

Well, its been a few days since my last blog because I have been in the hospital recovering from my RPAO. It has been a long and challenging week. Here is a recap of my last week:

Monday:
Surgery Day! I had surgery at 8am at Methodist Hospital in Indianapolis, which was quite an experience. Waiting for the OR nurse that morning to be prepped for surgery was making me nervous. I had even began to cry while waiting, so my mom was allowed to come back and wait with me as I got ready. I had the IV placed in my hand and was wheeled down to the OR. Once I got into the OR, I began to cry because it seemed so scary. Equipment was everywhere, people in scrubs, and an OR table that was nothing I had ever seen before and the tears continued to stream down my face. My doctors reassured me that everything was going to be okay and a few minutes later I was asleep and surgery was under way.

They used general anaesthesia, IV, and an arterial blood gas line to monitor blood pressure during the surgery. The torn labral cartilage was repaired by Dr. Maier from Methodist Sports Medicine and the osteotomy was preformed by Dr. Scheid from OrthoIndy, which went well with less bleeding than expected. The surgery lasted about 4 and a half hours and was in the recovery room for another 4 hours before being brought up to my own room.

I remember very little after the surgery and was very incoherent for the first couple days. I do remember seeing the faces of my family and boyfriend when I came into my room.

The day after surgery

Incision: 2 days post-op

Tuesday:
I don't remember much from Tuesday, but it was the worst day in regards to pain, even though I was on norco and vistaril by mouth and had a morphine and dilaudid pain pump. Respiratory therapy did come to my room to give me an inspirator, the thing that you breath into that measures breath volumes, so that I could learn to take deep breathes and decrease the chance of blood clots. I also sat up for the first time after surgery on the edge of my bed and stood up for a few seconds before getting too dizzy and having to sit back down. That night was the worst with pain...all I remember I was shaking and screaming for medicines because the pain was so severe.

3 days post-op

Wednesday:
I woke up and was still incredibly pale and my blood count was low so the decision was made to transfuse two units of blood. I was only allowed to transfuse one of the two I donated due to the fact that it needed to be destroyed for reasons I do not know. The other unit was from the Indiana Blood Center. PT came back twice and I was able to get up and walk a little with the aid of a walker. I didn't realize how different and painful it was going to be, but I did alright.

Getting up for the first time after the surgery

Thursday:
By now, the blood transfusion had taken effect, my color was back and I looked better than I had for days. I was even able to eat more than yogurt for breakfast and had some pizza for dinner. PT was really good and I was determined to use the crutches and walk a little. I was able to get up and down the stairs, as well as walk, "crutch", the length of the hallway and back. I had managed to impress my physical therapist. I had an ultrasound on my legs to check for blood clots and all was well. My IV and pain pump, as well as catheter had come out, which felt great, and I was one step closer to going home! I was feeling pretty good, so later that evening I took a lap around the orthopedic floor with my cool, millennial crutches.

That night was a little more rough and required a shot of morphine and zofran for nausea. The pain goes up and down and I had a big day. My leg looked a little more red and swollen and was checked for infection. I had even spiked a fever, for the second time during the week.

Conquering the hallway

Friday:
After a long week, in which I felt that I rested little with all the nurses coming in and out of the room every few hours, shots, medicines and vitals that had to be checked, I was finally going home. I saw my surgeon, his assistant and my physical therapist with a "good-to-go" report and I was headed home to recover. I had ambulance transport home, which wasn't too bad, and I was finally back to a normal room! It has been a long week and now that I am home, the therapy is up to me and I even have to give myself blood thinner shots.

Discharge Day

Lovenox shots

My friends and family had come throughout the week to visit, bringing balloons, flowers, cards, magazines and things to make me smile. It was greatly appreciated and kept my spirits up.

It has been a long week, filled with shots, IV's, doctors, nurses, therapy and lots of pain. But I feel better now that I am home and have my own bed :) Let the recovery begin!

Down to the Wire

2009-06-06T19:15:00.000-07:00

My surgery is approaching, about 36 hours away, and I am getting anxious. I am trying to think of it as the sooner I get this done, the sooner I get to start my recovery. This process has been painful, long and very scary to me at times. I have never dealt with or gone through anything like this before and I hope that this is the last. I never thought I would be in this position and I am definitely ready to get back to my true love, running. I am very scared of what is to come and I definitely fear the pain. This would not be my first surgery, but it is definitely the biggest one I have ever needed.

My boyfriend, Andrew, and his family have been very supportive and helpful throughout the process. They are keeping me in their prayers, which gives me comfort. My family has been there every step of the way and will be with me through the hospital stay and recovery process.

I have just been trying to relax and enjoy my time with family, friends and lots of good food! lol I am not looking forward to the surgery, but rather looking forward to getting back to running and all the things I love. Having no pain will also be a nice change to my most recent months and hopefully my hip will no longer pop in and out of place.

I will not be blogging for the next few days, but once I begin to feel better I will be back to documenting the process and will be started with the recovery process!

1 Week To Go...

2009-06-01T07:05:00.000-07:00

I have one week till my surgery. As the days pass, I try to fill them with fun activities and hang out with friends to keep my mind off the surgery, but it has been hard. I am getting more and more nervous as the days go by, but I am hoping the nerves are just getting the best of me and it is not going to be that bad.

I have plenty of sweat pants and t-shirts to lounge around in and soo many dvd's! My boyfriend, Andrew, bought me some awesome sweats and a stuffed puppy named Gunner.

I am taking Gunner with me to the hospital...he is soft and cuddly. The sweats are so comfortable and cute too! At least I have comfy clothes and plenty of things to do after surgery, but I am scared for what is to come. The unknown can be terrifying and I hope everything goes well!

2 Weeks and Counting...

2009-05-25T08:26:00.000-07:00

Two weeks from today is my surgery and I feel like time is flying by too fast. Part of me is ready to get the surgery and recovery process going, but part of me is too scared to do anything at all. This past weekend was my little brother's high school graduation party and I realized since I have torn cartilage and the pain has increased, the things I enjoy doing have become much harder to partake in. Even small things like playing with younger cousins is difficult because I can not run or jump, squat or wrastle :) Even when I try, I later regret it because the pain becomes unbearable.

I am definitely ready to be back to "normal." I am getting restless and can not wait till I can run again. As active as I have been, the last few months have been like torture; watching others do all the things I can not do or are not allowed to do by doctor's orders. I have tried my best to get out and enjoy the beautiful weather, but the pain ends up limiting my activities and I am worn out by the end of the day. I hate having to take painkillers to sleep at night, so I am definitely ready for that to end! I have tried my best, but the last few months have been a struggle and I am ready to get back to all the things I love.

I have done all I can to get ready for the surgery. My room at my parents house is full of rehab equipment, movies and lots of extra pillows...my doc has answered all my questions, so I know of what is to come and feel a lot more prepared...but I am still terrified...

My Family & Friends

2009-05-20T06:50:00.000-07:00

Throughout these past months I have struggled with the pain and the thoughts of having a major surgery. Many questions and doubts have crossed my mind. I have been angry with myself for allowing this to happen, as if it were controlable, and have fought to keep pushing forward. I was unable to relate to anyone and vice versa, until I joined a support group, hipwomen, of other women who have experienced this same battle. I still have many questions unanswered and I don't think I will ever really know some of the answers for "why?"

My Mom and Me

Not only have I been angry with myself, but I have been angry with God. I have felt as if I had been abandoned and left to fight alone. I was angry with him for allowing this to happen. I thought, "Haven't I been through enough?" "How much does one person have to go through?" I still don't understand why, but I have been able to deal with the fact that this is my mountain to climb. I also understand that God does not give us anything that he knows we can not handle. I have realized through this that I am much stronger that I thought I was.

Me and my Aunt Dena

It has not been easy for me and I know that the recovery process has just begun, but I have an amazing support system. My family and friends have been there every step of the way, even when I have been angry with them or tried pushing them away, they just held tighter. My Mom and Dad have helped with everything imaginable and I will be recovering after the surgery at their home, in my old room. I have talked and vented to other relatives that have offered great advice, including to start this blog as an outlet for my thoughts and experiences. My brothers are always around to talk to, give encouragement and a good laugh. My friends have been amazing and have been there to hold my hand when I gave blood for my own surgery, as well as being my support at doctor's appointments or trips to the ER. My family and friends have given me a constant flow of encouragement and have offered help through many avenues. I know if I need them they are standing right behind me and that has been the greatest gift through this process. I am truly blessed to have such amazing people in my life!

My Dad and Uncle Bryan

My older brother, Michael, and Me

My little brother, Aaron

My best friend, Chris, and Me

One of my best girlfriends, Melissa, and Me

One of my other best girlfriends, Mallory, and Me

Questions for the Doc

2009-05-15T09:46:00.001-07:00

I have my pre-op appointment in less than week and have compiled a list of questions that I have for my doc about surgery, as well as what to expect afterwards.

Will I see you (doc) the morning of, prior to the surgery? Yes
What type of procedure is being used? Ganz, Smith-Petersen approach, etc.
How long is the surgery? 5+ hours
How long is the hospital stay? 4-6 days
How long will I be on crutches? 8 weeks no weight-bearing, 12 weeks weight-bearing
How long till I can drive? Minimum of 8 weeks
How will pain management work during and after the hospital stay? PCA pump w/ morphine or dilaudid; After discharge: norco
Will anti-nausea meds be administered as well? Pain meds make me sick... zofran or phenergan
Will I need the blood-thinner shots? Yes, 2 wks.
Will I need a foley-catheter? When will it be put in? Yes, it will be put in after I am put to sleep and be in for about 2 days
Will an epidural or general anaesthesia be used? General
Stitches or staples? Does one leave less of a scar? Glue; 9-10 in. scar
When will I be able to take a shower, get the wound wet, etc.? Can take a shower and get the wound wet after about 5 days
How often will I have PT? A little the first few weeks and increased at about 6 wks.
Will I be able to swim for physical therapy? Yes, after about 3-4 wks.
When or if are the screws are removed? The screws can be removed but it is not medically necessary
How long will I need to wear the TED stockings? 2 wks.
Is nerve damage possible?
Blood loss/conservation? Donated 2 pints of blood @ Indiana Blood Center
Can this cause symptoms in my other hip? If it does, will I need surgery on the left hip as well? Not likely
Will I need/get handicap placards? Yes
Would ambulance transport home be beneficial or more appropriate? Yes

I have a lot of questions for my doc because I feel as if many things have gone unanswered or were not explained to begin with...I am hoping that after this appointment, not only will I feel better prepared, but my mind will be more at ease.

*After I met with my doctor, I was able to get my questions answered and note some of my concerns with the upcoming procedure. I feel a lot better now that I have my questions answered and know more of what is to be come...

Running

2009-05-15T06:57:00.000-07:00

Running has been my passion and stress release for many years. My relationship with running has been a love/hate one in which I have faced many battles with, but still continue to push through. I love running for the feeling of being alive that it gives me. You feel every step, breath, struggle and victory. I have undergone two surgeries to fix my shins and lower legs so that I can continue to run. I have had chronic compartment syndrome as well as stress fractures and shin splints. I had overcome those injuries to return to the sport I love, running. Now, I face another enemy on my run, hip dysplasia. This too will require a surgery so that I can return to my love. I have missed being able to get up before the sun and run till I can run no more. I miss the smell of the mornings and being energized after pounding the pavement. I miss the excitement of buying yet another pair of running shoes. I miss a long run on a beautiful day, feeling the rain on my face or seeing my breath on a cold winter day...oh running, I will be back soon!

Struggles, Stress and Tears

2009-05-14T06:54:00.000-07:00

As the days and months go by, I have been able to deal with the fact that I have hip dysplasia. When I was first diagnosed and told of what would be necessary to correct the disorder, PAO, I was in shock. I couldn't believe that this was happening to me. I thought, "why now?" I had been running for years and my hip had never bothered me before. "Why now?" Why did this condition that I was born with now become such a problem? I had been training to become an Army officer for years, as well as been a member of the Indiana Army National Guard and all of a sudden I have a "genetic disorder" that could derail everything I had worked and trained for.

I couldn't have been more depressed. My love of running had been taken from me and with the thought of never being the same again crossed my mind over and over. I was even told that if I do not recover, it would be my fault for not being able to stay in the Army. All I thought was "are you serious?" I am going to be blamed for a problem I had no control over, I have to fix, and can only control my attitude through recovery!? That just made me angry!

Dealing with a decision that could potentially affect the rest of my life and just trying to do what is best, on top of the pain and crap that I have to go through to get "back to normal," and then have the stress that if I do not recover, it is my fault. What is wrong with people that they think they have the audacity to put that on me!? The advice that I received was "life is not fair." You have got to be joking! "Life is not fair!" That is the best you can come up with!? People who say things such as that are just justifying bad behaviour and have no moral backbone. They have the ability to affect change and choose not to. I have been told that I am "weak" by these same individuals and that my tears are just a sign of "weakness." In all reality, they are the ones who are weak. I am the one still standing, determined to do what is necessary to get back on top and not allowing the words or actions of others get in my way. They are weak for not standing and doing what is right.

I have chosen a profession that is based on the values of integrity, honor and respect and I have received little support from that same profession. "Never leave a fallen comrade," is part of our warrior ethos and only few have stood behind me through my struggles. Those who have stood behind me are the true warriors. The motivation that I have is to NOT become the people who have tried to break me, but to become better than that.

Many nights I have gone home with tear-filled eyes, wishing that I could change my circumstances. Many nights I had wished for the pain to go away. Many nights I wondered why I have to go through this? I still don't know the answer to that question, but I know that if I can get through this, nothing or no one can ever get in my way! I refuse to let others dictate how I am going to live my life!

I have found strength through others! My friends and family have been there for me every step of the way. I have found comfort through the stories, journeys and advice of others that have been through or are going through this process. The support group I joined, hipwomen, have been amazing in answering questions that I have had about what is to come and I have greatly appreciated it! It has helped put my mind and worries at ease. I know that it is going to be a long recovery, but I know that in the end this fight will only make me stronger...

Getting Ready for Surgery

2009-05-13T16:12:00.000-07:00

As my surgery nears, 8 June, I have been getting prepared by gathering things that will be useful for the hospital stay and after the surgery. This list is compiled with advice from others who have been through the process, as well as things I thought I might like.

millennial crutches
wheelchair
shower chair
reacher
extra pillows, wedge pillow
loose-fitting clothing (pj pants, sweat pants in a size larger than you wear to accommodate swelling, robe, etc.)
non-slip socks, slippers
handicap placards
notebook and pen (to write doctor instructions or questions in)
baby wipes
hygiene items (get a fav lotion or shampoo, little luxuries are nice!)
digital camera
laptop (so that I can blog...lol)
DVD's...something funny to stay entertained

The beginning of my journey...

2009-05-13T10:10:00.000-07:00

My journey began a year ago, Jan. 2008, with training for the military. My hip has bothered me on and off for the past year, but I thought nothing of it other than "usual" soreness from all the activities I have been involved in, which includes training for the Army, running, horseback riding and almost anything outdoors. I have lived a very active lifestyle and have been involved in sports my entire life. Training injuries and soreness have been common throughout my life and I thought the hip pain was just part of the job.

January 2009 came and so did another sporting event. Our ROTC battalion was headed to the University of Notre Dame to compete in a basketball tournament. The basketball tournament went well and the ladies team I competed on finished in 2nd place for our bracket. As I recovered from the long weekend, I realized that my hip was hurting worse then ever. Nothing was helping, so I decided to make an appointment with my sports doc.

An MRI was scheduled and the results came back with torn labral cartilage, a cyst and moderate bilateral dysplasia. Wow, I was shocked! I felt as if I had hit a brick wall at 90 mph. I was then referred to a hip surgeon, one of few, that treats and preforms osteotomy surgeries... his name is Dr. Kevin Schied at OrthoIndy. As I met with him, many options were discussed and we came to the conclusion to take the next step and have a PAO performed. PAO is short for periacetabular osteotomy. It means that the shallow hip socket is going to be broken, turned and repinned in a position that is better able to support the head of the femur. Cartilage will also be grafted because I tore the cartilage that cushions and lines the hip socket.

Since my diagnosis, I have been unable to run, which is my #1 passion! I have to admit that some days are worse than others, but I know without surgery I will be unable to continue with the activities that I love, as well as continue on in the Army. Pain is a day-to-day struggle, but I am taking the steps that are necessary to get back on top!

I hope through this blog that others are able to find help, ideas or an outlet for their dysplasia. I have found a lot of comfort and information through the stories of others and it is the reason in which I started this blog about my journey!