So much pain. Everything is so hard to do. To make it worse, Mark is out of town and everything is left to me to manage and I just CAN'T DO IT. I can't get the boys to baseball practice after having to drive to doctor's appointments, the pharmacy, and keeping things together in the house. Driving is too painful and my pain is already out of control. In addition, managing a child with Bipolar Disorder takes a lot of energy. I hear the frustration and disappointment in Mark's voice when I tell him "I just can't get them to practice. I just can't drive any more. I just need to stop, rest and let the pills and ice work." Maybe I just think I hear the disappointment in his voice, in the pause after I tell him I can't, I won't. Maybe its just disappointment in myself, in what my body can no longer do, especially after riding high all of last week.
Last week I was feeling good and riding the prednisone wave until it wore off and I crashed...HARD! I can see how it can be confusing for all of us. While the going was good I was cleaning the house and doing some re-organizing. I was able to do some grocery shopping and push myself in physical therapy. I seemed like the person I was a couple of years ago. But, that was last week. Now its gone. Now the pain is so bad sometimes I want to throw up. I even think of going to the hospital just so they can give me even a few short hours of relief, but the hassle of going to the hospital isn't worth it...and whatever they do wont be permanent. I know the muscle relaxers, the ice and rest will allow the irritation to subside and the pain will eventually go away, but for now, the end is nowhere in sight. I can't even think! The pain clouds my thought process, my judgment. I can't hold a book or my kindle in my hands because the pain runs from my neck and shoulder down through my arm. It doesn't matter anyway because I can't concentrate to follow the words on the book...so much for distraction. It's my fault though. I have been reading a couple of books on Hypermobility and EDS and if there's one thing they absolutely stressed it was PACING! During the good times, make sure to schedule rest, during the painful times, schedule more rest...I did not heed their advice. I hope I have learned my lesson. I say hope becuase its still hard not to wish to be who I was, but I will get there...we, as a family, will get there. The mourning will subside and acceptance will come. I already signed Jan up to get his permanent license so that he can help me out more. Mark travels a lot and driving is too much, so Jan can do more...like drive himself and Ian to baseball practice!
I finally gave in and asked the genetics doctor for a referral to pain management. There has to be something to make this at least more tolerable, right? I hadn't pursued this before because on my journey to diagnosis I heard from so many doctors that I was drug dependent, or over medicating, or its just not possible that Cymbalta and Lyrica don't work, or it can't be that bad. I felt judged, insulted, hurt. I felt I was being called a drug addict and a liar. It just made me feel more inadequate and weak. I doubt myself and wondered if there was something wrong with me because I couldn't handle this and maybe everyone else in the world could. But the pain was so unbearable it took my breath away and the medicine they gave me made me sick!!! Now I know, that I actually have an incredibly high threshold for pain and am incredibly stoic, waiting too long before treating my pain. I also learned that according to EDS standards I have been under-medicated all this time. How dare they judge me! How dare they qualify my pain! How dare they make me think I'm weak when I have been incredibly strong!
However, in taking this steps towards formal pain manegement treatment another challenge begins. I pose a treatment conundrum for any doctor. I can't be treated with narcotics/opioids because of allergic reactions which have become progressively worse. I can't take naproxen or ibuprofen because of ulcers. I can't take SSRI's or SNRI's (antidepressants and its relatives, some of which help relieve neuropathic pain) because they worsen the migraines. Right now muscle relaxers are the only thing that are providing any relief, but they pose a danger for Ehlers-Danlos because the longer I take them they higher the likely hood of dislocations and subluxations. Right now I'm taking 3 muscle relaxers at the same time; needless to say, not good for my loose joints as well as for driving. As always, when I see a new doctor I have to begin the process of "convincing" them that "yes I have tried all of these medicines" and they all cause side effects, and "no, I will not try them again" and "no, just because I will not try them again does not make me resistant to treatment". Believe me this can be quite difficult when a doctor has been trained to believe that this MUST work on ALL patients! Hopefully, because the doctor I have been referred to, who is a specialist in patients with EDS, will be more understanding, and will make this process less grueling. I may have to refer THEM to consult with my primary care physician for evidence!
Another reason I waited is that because of these same challenges, I didn't think there was anything left for me to treat pain. I still don't expect much from it. But, now that I have experienced the difference between, me with pain and me without pain, I want more! I researched the UC Pain Management Center and saw the various therapies they offers including TENS, which I think might benefit the scarred tissue in my left shoulder that continues getting irritated and "spastic". I have allowed myself to feel a tiny sparkle, a glimmer, of hope. It's been so hard, disappointing, soul crushing, to go from feeling great to excruciating pain once again. I must say, I don't want to be on prednisone again unless its absolutely necessary, like for asthma or an allergic reaction. As a hypothetical, if presented with the choice between prednisone as a pain relief option and noting else, I really don't know if I would choose the pain. I want to be pain-free, or at least have a better quality of life, but prednisone has too many side effects. Right now I can't wait to loose this weight and feel like myself again. Yes, we are a society that relies on image too much, but such is life. I also don't recognize myself, my body, anymore and that doesn't help me feel any better. Its a vicious cycle:
pain, which requires rest to reduce damage, prednisone to reduce inflammation, prednisone weight gain, rest equals no exercise to lose prednisone weight gain, increased pain because of not exercising :0(
As always, trusting that God will send his angels to guide me along the right path. I continue listening...in faith.
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