Completely Unexpected...

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...

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

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

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?

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

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!

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

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

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

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

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

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

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

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

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

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!!!

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!!!