Pop goes my shoulder...

My right shoulder dislocated. This wasn't the first time, but it was definitely the worst, thus far. It popped out while I was crutching (at PT) and I was able to reduce it immediately. However, it slid right back out and just hung at my side. I definitely think that was a sign that I need to start walking. Cam worked on some nerve release pressure points but there was no change. I talked to Dr. Shiple (he was at the Excel location today) and he reduced it--again. He told me to wear a sling, at least until my appointment next week. If it gets worse I have to see him tomorrow to check for nerve damage. It's possible I stretched a nerve when it dislocated. With EDS my nerves are already weaker than 'normal'.

I currently can't feel my shoulder and I get shooting tingling pains in my finger when I move it. I feels like my arm is no longer attached. I can't use my right arm to crutch, which complicates everything. I am not ready to move down to one crutch, but I don't really have a choice. To say it feels weak would be an understatement. It's pretty much dead...which in fact is actually a medical diagnosis--"dead arm." The term is often heard with pitchers in MLB. It is typically caused by instability--namely dislocations and/or recurrent subluxations. "Dead arm" does not go away on it's own---it requires surgery.

Good news it's that I was already planning on having surgery next summer (sad that this is actually good news) and my left shoulder was discharged from PT today!

Cam said that Thursday will be our "learn how to walk" day---that should be "fun." Both of my hips have been really painful lately. The pain in my left hip is likely due to acting as the sole weight bearing leg for awhile. My right hip pain is related to the tears I have in my rectus femoris and iliopsoas. I see Dr. Shiple next week for a dextrose epidural. If I am able to get numb, then I will try PRP for the tears. Otherwise, I am very reluctant to go ahead with PRP treatments with no local anesthetic. PRP is really my only option at this point.

I came across this excerpt from an EDS patient--I don't know the original author---very true!

"I know I look healthy, but just walking across the room feels like a marathon and going anywhere outside of my house feelings like climbing a mountain. I get tired more easily than most people."

Both of my knees have been killing me lately. I don't know if the change in weather has anything to do with it but they hurt all the time. Thankfully I have not experienced any subluxations/dislocations since receiving my new knee brace (Bledsoe 20.50). I still have not scheduled my surgeries for this December and I am getting very frustrated. I need to give my professors enough notice if I need to take any of my finals early. Fingers crossed we have the dates by the end of this week.

My kidney infection is FINALLY starting to get better. I switched antibiotics because Cipro wasn't working and I am hoping to notice more improvements soon.  I still need to have an ultrasound to make sure nothing else is going on but I expect to be kidney infection free by this weekend.

There aren't enough hours in the day for 5 classes + the homework that comes with them, physical therapy (which takes me 3+ hrs), appointments, and managing pain and dislocations. I am exhausted and in a lot of pain.

Oh, and I am sick of being brunette and have decided to go back to being a blonde!

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You Have Got to be Kidneying Me!

Well as if juggling school (and all the work that comes along) with my dislocations, pain, and physical therapy wasn't enough, now I have a kidney infection. I started noticing symptoms (that didn't seem normal) on Monday when I was experiencing knife stabbing back pain. Back pain is 'normal' for me but this didn't seem right. However, I put it off as muscular and made sure to tell Cam at PT on Tuesday. Tuesday was horrible. The back pain got worse and was radiating to the front. Cam tried to work on the area, still hoping it was just a bad muscle spasm. We tried heat as that usually helps...but it didn't. Then I started to feel like my groin was on fire and knew something was wrong. After PT I called my primary and was seen immediately. My back pain was directly over the kidney's and the test came back positive for infection. Great!

My PCP told me that if my fever went above 101 and/or if the pain worsened to go immediately to the ER. Thankfully that hasn't happened.

I am on antibiotics for 14 days--taking Ciprofloxacin. I will have another test next week to see if the antibiotics are working. I have noticed a slight difference in symptoms since I started taking Cipro yesterday. Hopefully my symptoms continue to improve.

*Fun fact: Ciprofloxacin is the antibiotic used to combat Anthrax--> I learned this on NCIS (my favorite TV show).

Aside from my kidney infection, my hip pain (a result of psoas/rectus femoris tears) is still horrible. Cam hasn't cleared me to start walking and I am getting very frustrated. Hopefully the pain calms down enough to allow me to start "learning" how to walk properly. The crutches are really taking a toll on my shoulder.

My right shoulder has been subluxating more frequently. Cam has been taping it to help train the surrounding muscles (particularly around my scapula) to fire in the correct order. Surgery is not until next summer, so hopefully I am able to get off crutches soon (or switch to a cane) to limit the amount of subluxations/dislocations I have.

My left shoulder has been sore lately which is likely a result of increasing the weight/strength of some of my exercises. Because I was limited in what I was able to do on Tuesday, I don't believe my shoulder will be discharged tomorrow--hopefully next week! It is still doing well and right now is really the only joint that doesn't cause any problems.

Both of my knees still hurt. Thankfully my brace (Bledsoe 20.50) has helped prevent any subluxations/dislocations. I am still waiting to hear back from the surgical scheduler on the official dates for my reconstructive knee surgery (TTT Osteotomy and MPFL reconstruction) and ankle surgery (Chrisman Snook procedure). I really hope we have the dates soon--as I need to inform my professors if I have to take a final early.

Hopefully next week goes a little smoother...

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Play On

2.5 weeks down...13.5 weeks to go! Some may think it's crazy to countdown the weeks until the end of the semester, but I need to see the "end in sight" so to speak. At this point, I am taking this semester day by day. My classes are going well--minus the inability to focus at times (due to pain). I have a ton of work to do and really don't have any time to relax. I am really struggling with pain.

My right shoulder dislocated using crutches yesterday. Thankfully Dr. Shiple's office is on the way home from school---I was able to see him to make sure it went back in properly. Usually I can reduce my joints on my own, however when something doesn't feel right I always have Dr. Shiple check. He helps me manipulate/reduce it back in place. He used the ultrasound to check the laxity of my ligaments (HAHA) and to check the positioning because we both felt like it was stuck. Due to inflammation it took another subluxation (last night) to finally feel as if my shoulder was sitting in the socket correctly. Tomorrow Cam and I will work on finding a taping technique to help stabilize the shoulder while I am on crutches. Sometime next summer I will be having the right shoulder reconstructed--same procedure as the left.

Speaking of the left shoulder, it's doing great! My strength is improving (slowly), and I don't feel like I have any limitations. My ROM is functional and stable and I rarely have any pain (even with using crutches all day). If nothing changes, my shoulder will likely be discharged from PT next week. Unfortunately, I will not be joining my shoulder in this discharge because my hip and knees haven't graduated.

My hip is still not doing well. I have large tears in my iliopsoas and rectus femoris. Unfortunately other than surgery and/or playing the "waiting game," there really aren't many other treatment options. I have an appointment scheduled for a dextrose epidural in 3 weeks. If that numbs my leg then we are hoping to try PRP (Platelet Rich Plasma--treatments). If I do not experience any numbness from the injection then I will not go ahead with PRP--so fingers crossed I get numb! Cam said that I am not allowed to walk without crutches yet--pain and mobility wise I am a mess and he doesn't want to cause compensatory pain elsewhere. I have noticed that compression against my hip/groin helps a little. I will continue to have my groin wrapped, and wear compression shorts whenever possible. I am also starting a natural anti-inflammatory because my stomach doesn't tolerate anything stronger than Tylenol--and well, Tylenol doesn't do the trick.

My stomach has been an issue lately. I am nauseous all-day, everyday--it's a horrible feeling. Unfortunately I have no idea what is causing the nausea. Originally I thought it was Celebrex, but seeing as I only took that once and it would be out of my system by now, that can't be it. I will be making an appointment to see my PCP to discuss other possibilities--gall bladder, ulcer, etc.

I still haven't made an appointment for the ENT to discuss my inability/difficulty swallowing. I have been so overwhelmed with classes and other appointments that I just haven't had any time. Hopefully I am able to make an appointment soon because it would be great to have answers and possible solutions.

We are still waiting to hear back from the surgical scheduler to confirm dates for my December surgeries. Hopefully we get the confirmation soon. I would like to put this issue to rest (in the back of my mind).

Pain and exhaustion pretty much consume my life right now. 

This song- Play On- by Carrie Underwood describes how I have been feeling lately. It is a great motivational song..helps me to keep going despite all of my challenges!

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We Remember

***WE WILL NEVER FORGET***

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Trying to Understand

*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.

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

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1 week down...15 to go!

My first week back at school (after a year and a half hiatus) is finally over. I survived...but barely! Thankfully I don't have classes until Wednesday---giving me some time to recover. I only had three days of classes and already I need a break---I am exhausted. Unfortunately after next week, my schedule is going to be even more of a struggle. Instead of three days of classes, I will have four...with five classes on Mondays! I am not ready to be back. However, I don't think I ever will be fully recovered or ready. I just can't put my life on hold any longer and I need to face reality---which is...it will NEVER be easy, everyday will be a struggle and I will face challenges, and there will always be pain and discomfort...it's the nature of EDS! I can manage my symptoms and dislocations as best as possible (bracing, surgery, etc.), but I will always have Ehlers Danlos Syndrome. I can't stop living and continue to put my life on hold for a disorder that has no cure. It's time to get back to my life...even if that means making adjustments along the way.

I was (and still am) in so much pain. My hips and knees are not taking to this new schedule too well. Sitting in class all day, crutching to class, and trying to focus on lectures and discussions (while in a tremendous amount of pain) is emotionally and physically draining. On top of my class schedule I also have physical therapy three times a week and various doctor appointments. Let's not forget the fact that I have assignments and papers due every week as well. I have a lot on my plate and I am already full.

Good news is I absolutely LOVE my classes and professors. My professors are all very understanding of my condition and are willing to work with me to make things more manageable. My classes are very interesting, which I am thankful for. Interesting topics and discussions make focusing through the pain easier. It will be a lot of work though. Four out of my five classes are based on writing assignments. I guess the positive to more writing is that there aren't as many tests/quizzes.

Unfortunately, I am back on crutches. My hip and knee pain are getting worse and the cane just wasn't providing enough support and stability. I spoke with Dr. Shiple this week about my pain and if there was anything we could do for it (that we haven't already tried). PRP (Platelet Rich Plasma) came up as an option, however I am very reluctant. Because I am insensitive to local anesthetics, the procedure would be extremely painful. Dr. Shiple mentioned possibly doing a dextrose epidural to see if I get numb. This is a newer (local) anesthetic technique...and one that we haven't tried yet. If I do get numb from the epidural (*standard epidurals don't work on me*) then I would be more open to trying PRP for the tears in my hip. If I don't get numb then there really aren't any other options. I did mention Toradol injections to Dr. Shiple because it is my main method of pain management/relief after surgery. He agreed, however, they do not routinely administer Toradol and therefore do not carry the medication in the office---it would have to be ordered. I will hold off on Toradol for now, and try the epidural first.

I have had to cut back dramatically in PT due to pain---the tears in my psoas and rectus femoris contribute to the pain, tension and immobility. We are now working on exercises above the waist and breathing techniques. Hip/leg related exercises will get us nowhere and will likely lead to more pain and mobility issues. I guess you could say that I am (negative) back to square one---(even though that doesn't really make sense). Cam is trying to train my body not to use my hips as the main stabilizing force. Apparently my hip flexors (psoas and rectus femoris) are overworked and therefore have gone on strike. I think my knees are close to joining this strike as well.

I spoke with my surgeon about the scheduling of my surgeries. We have decided that I will likely have one of the procedures on December 16th and the other 3-4 days later (while I am already admitted). This would give me enough time to be discharged before Christmas, and 4 weeks of solid recovery before returning to school for the spring semester. Because it is the same leg (right knee and ankle), it will be one long recovery verses two separate recoveries. This will also be helpful for my right shoulder...which is still subluxating.

I am exhausted, in pain, stressed, and overwhelmed--but I just need to take this one day at a time...God never gives you anything you can't handle and I believe He will help me make it through this semester (hopefully with a high GPA).

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