Tomorrow is my follow-up appointment with Dr. G to check on how well my various injuries and maladies are doing. On the plus side, the cellulitis on my thumb and my latest urinary tract infection seem to be completely healed. But despite taking my 10 day course of Cipro, I’m not breathing any better than I was weeks ago. Normally, that wouldn’t concern me -- since developing bronchiectasis, I sometimes need to be on antibiotics for up to four weeks to get a lung infection to clear up enough to return my breathing to status quo.
But I don’t think a lung infection is the only thing going on anymore. Last week, my DH noticed a new factor in that’s definitely contributing to my perpetual shortness of breath, and I’m worried that solving my problem just got a whole lot more complicated than just taking some additional Cipro.
A little bit of history is necessary to understand where I’m at right now.
When I had my Baclofen pump replaced last year, I discovered that my left leg will act up when some part of my body where I have limited or no feeling at all is uncomfortable. The acting up can take many forms, from twitching rhythmically to one or more muscles tensing up and remaining rigid in spite of our best efforts to relieve the spasms. This has turned out to be a very useful warning device, as it lets me know that trouble is brewing in one of the many areas on my body where I can’t feel sensations like pain, temperature changes and such. (The local nerves, which are healthy, still detect the stimulus, but the signals can’t get to my brain to be interpreted because my spinal cord is so badly damaged.)
When my leg starts acting up out of the blue, I know that something is amiss that needs my immediate attention. The problem could be obvious and easy to remedy (discovering that there’s a large dent in the back of my thigh because I’ve accidentally been sitting on the cap to my bottled water) or more subtle and complicated (internal infections).
Last month, right about the time I first noticed my lung problems, my left leg started developing knots in the calf and thigh muscles that couldn‘t be relieved (think 24/7 Charlie horses above and below the knee). At first, this didn’t concern me -- I thought it was probably being triggered by any or all of the infections that I was battling (lung, urinary tract, cellulitis on my hand). I did my best to cope with the discomfort and looked forward to it going away once I got some antibiotics into my system.
But the antibiotics didn‘t help. And now there‘s new problems that have surfaced, neurological symptoms that may mean that my degenerative spinal cord damage has gotten worse. If that’s really the case, then it may be that no amount of antibiotics will allow me to breathe easy again.
The first change I noticed started last week, after a nap. When I woke up, there was increased numbness in my right arm and left leg (both already suffer from limited sensation related to my spinal cord damage). At first I thought it was just a circulatory problem from sleeping with these limbs extended in very awkward positions. But when it didn’t go away after 48 hours, I reluctantly acknowledged that something bigger may be going on.
The next day, I was feeling particularly constricted around my midsection. I can best describe it as a cross between wearing a Michelin Man costume that‘s a size too small (e.g. feeling like there’s a tight-fitting inner tube or two around my waist) and bending over a 2” x 4” and having it press into your gut. This has been happening a lot in the last month -- I had simply attributed it to bloating from water weight or excess air in my digestive track (an annoying and embarrassing side effect of the problems I have with swallowing). When I commented to the Hip Hubby about this, he gave my belly a poke right below my ribs.
The muscles in my abdomen were rock hard. No wonder it’s been such a struggle to draw a decent breath!
Even though this was a really disturbing discovery (made even more so because it‘s happening at the same time as the other new problems in my arms and legs), it was a relief to figure out why I had been having so many problems that couldn’t be resolved using my usual tactics (diuretics to relieve bloating, etc.)
I’m praying hard that all of these problems are just temporary glitches in my wiring, and that one morning soon I will wake up to discover that my leg hurts less and moves a bit more easily, that my hands aren’t tingling, and that I no longer feel like I’m wearing a metal cummerbund around my waist. But I’m scared -- really scared -- that they’re not an anomaly but instead represent the next level of “normal” as I lose even more spinal cord nerves to the irreversible damage caused by tethering, syringomyelia, and just plain old aging.
I will be mentioning this to Dr. G tomorrow, although I’m not sure what he can do to help me relieve the symptoms. (Who knows -- he has surprised me before.) And if there’s no change by next week, when I go to Puerto Rico for my next Baclofen pump refill, I’ll ask that doctor to up my daily dose in the hopes that it will at least relieve the tension in my legs, and at best get my abdominals to loosen up too. The option of last hope for help is to visit the island neurologist, and see what he may hold in his bag of tricks to make my life more comfortable.
If I may toot my own horn, I’m doing amazingly well in accepting the possibility that there’s a good chance these changes may be permanent. Who knows? Maybe I’ve finally taken to heart all of the advice I’ve given about panic/anxiety/worry/stress not doing a thing except making you feel worse than you already do. It may be small, but at least it means that I learned to do something good as a result of yet another neurological setback: I learned how to take a deep breath.