Sunday, September 4, 2011

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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