It's been a while but I haven't forgotten about my chronicle. Never! I've just had a few things happening between excruciating pain and having an electrode implanted in my stomach.
Going back approximately 6 weeks. I was having issues with my stomach (again) and despite the feeling of fullness, I decided to eat an apple because I had not eaten since breakfast and it was after 6pm. Costly mistake. I threw up for hours! Secondary to the "gastrointestinal distress" (as my son would say) I ended up injuring the muscles on the left side of my neck and shoulder due the stress of vomiting. My left neck and shoulder was left sensitive post-surgery, because it was the most impacted by the herniated discs, and now I get horrible spasm. So for the last 6 weeks I've had neck and shoulder spasms...HORRIBLE EXCRUCIATING spasms. I couldn't turn my neck or relax my shoulder. Heat and ice wouldn't help and physical therapy would only loosen it for a few hours.
A week ago, thinking the pain was as bad as it could possibly get, I took some pain medication, an opiate, hoping to get a little bit of relief. I don't use this type of medication often because of the risk of rebound migraines and because I'm prone to allergic reactions. Well.....I got an allergic reaction!!!
Yep. A full head to toe, red, itchy rash, palpitations, racing heart (125 bpm), high blood pressure (140/110) with shortness of breath. And that was AFTER 2 doses of 50 mg of Benadryl! I was hooked up to an EKG, had more Benadryl and some prednisone. At discharge my heart rate was still 100 bpm, and BP 130/100. I was sent home with instructions to use 50mg of Benadryl every 2-4 hours, a medrol dosepak and an EpiPen.
I was seriously wrong in thinking the pain couldn't possibly get any worse. 2 days later I was back at the doctor's office, because the thought of having to endure another hour, let alone another night with the pain, which was now spread down my back and arm made me nauseous and made me cry; I JUST COULDN'T TAKE IT ANYMORE!!! I had to hold my head up with my hands because I didn't think my neck could sustain my head up. I was told "No more pain meds for you. Your reaction was pretty significant and each time it will get worse. I don't know there's anything we can do for you." We finally reached an understanding about using muscle relaxers since a spasm was the core of the problem, rather than a pain med which would only have masked it anyway. I would also be able to follow up with the orthopedic surgeon in a week for a more thorough evaluation and treatment. Fortunately, I'm a well established patient and there was no question about the legitimacy of my condition and that I was not there as a "drug seeker" otherwise I might have been forced to take my life.
I do not make that last statement lightly. The amount of pain I was experiencing was utterly unbearable and incompatible with human existence even at its barest and most minimum. It was inhuman, cruel, vicious, maddening, destroyer of spirit, breaker of will. When faced with the thought of being an entity subjected to this torture for the rest of my life, my thoughts turned bleak and hopeless.
I am glad to say that the muscle relaxers have helped significantly but I have to take them on the hour without fail or I will pay for it! I still have a limited range of motion, am not able to carry much weight with my left arm (up to a water bottle), and I get hurt when I drive among other things. But the pain no longer feels unbearable. It's inconvenient, uncomfortable and sharp when I move or use those muscles the wrong way, but it's manageable.
I don't know what's down the road. I don't know if I can keep taking these muscle relaxers for a prolonged period of time. I don't know if there will be a process of degeneration or progression related to this syndrome and it scares me to think that this is what a life with Ehlers-Danlos will "feel" like for the rest of my life. But for now, I have "survived" and "endured" this "episode".
I continue to seek peace and listen
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