People respond differently to the treatment in the days after receiving it. The hospital presents me with the "Things To Look Out For" list, which includes nausea, vomiting, fatigue, pain. In my case, I've rarely experienced the nausea and vomiting, but the fatigue and pain slam me like a freight train. I have neuropathy in my legs and feet, particularly in the lower legs and feet. Neuropathy is so strange because everything from my shins down is completely numb to the touch, but they hurt like hell. When I was younger, I was playing football on the beach with some friends. Someone had dumped their barbecue grill without burying the hot coals, and without seeing them, I ran right through the coals. Well I jumped about 9000 feet into the air and screeched like an injured cat, but the damage only amounted to a bunch of second degree burns.
That's exactly the sensation I'm experiencing these days. I've often heard neuropathy described as "tingling". I'd pay cash to trade "tingling" for "fire-walking". It hurts, and it makes me very grouchy. I know that I'm difficult to live with, but I can't get anyone to shoot me. (I'd bet they would like to).
The medication I've been prescribed can handle the pain, but then I'm useless. More so than usual. There's an extra room in the house where I've placed a bed, and that's where I go and try to hide so no one has to deal with me. I'm not actively nasty, as in I don't hunt for people to bother. But I can't spend the rest of my life doped up and gathering mold. I'm trying to find a happy medium. The right amount of pain medicine that doesn't leave me drooling and babbling.
So it's a trade off. I spend a few days in utter misery because the IVIG is producing measurable results. My "good" numbers are climbing. I get the treatment monthly now, so perhaps the numbers will get to the point where I can increase the time between infusions. That way, the family will be better able to deal with me and not take me up on the order to shoot my head off, ya know?
I eat like 3 people because of some other medications I'm taking. We'll get to that topic in my next issue. In the meantime, if anyone has any ideas or suggestions, please use the comments section, it Tweet me... @LippyJimmy
3 comments:
It astounds me what people are capable of enduring. The human spirit is truly a miracle. I wish life wasn't so full of trials of endurance. There's no easy way through any of those trials. I hope you can continue to lengthen the space between these treatments. They sound just awful.
Nausea vomiting is the common problem with the people who are taking the same drug but we can develop the immune system itself through natural way of our body if we go through acupuncture.
Neuropathy sucks my friend. I too have the excruciating pain, though not as bad as you it seems. I've tried a multitude of meds, and by far the best result has come from lyrica (google it- that's what we call it in Australia!). I've found I can take quite large doses twice daily, and when combined with regular otc pain meds I get quite good relief. I also can take an extra dose at midday if needed. One thing I've found that does help is keeping my feet cold. I have been found lying on the kitchen floor with my feet in the refrigerator! I hope you can find something that works for you. I'm off to see a new pain specialist in 2 weeks. Maybe he'll have some ideas I can pass on....
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