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