Maybe it’s because for the first time in a month, I’m not sick or in pain or in crisis, but things are looking up.
I was really concerned that this semester was going to be terribly difficult for a variety of reasons, but it’s actually going better than I could ever have imagined. It was early enough in the year that I was able to rearrange my schedule and limit the number of nights I’m in class (as part of the recent family crisis, I had to give up one of my two babysitters so I needed to be home more for a while). In addition, the flow of one class has been much easier than expected and the content of the other has been more straightforward and enjoyable. I was worried that I would fall way behind being so sick the past few weeks but my study partner has been great about sending me her class notes and I’ve tried hard to keep up with the reading. Fortunately one of my two classes is a legal writing class so the first week was mostly introductory. Finally, the dean’s office and the accommodations team have been extraordinarily helpful in getting the necessary info from my doctors and helping work out a plan that takes into account both the pain and the confusion/dizziness/fatigue caused by the medication. My teachers have been really accommodating and pleasant to deal with and that has made my life so much easier.
I also met with the neurologist today. The great news is that the nerve pain is real but that the nerves are inflamed, not permanently damaged AND he thinks he knows why.
It’s from the micronutrient deficiencies I’ve been struggling with for several years (iron, B12, calcium and, most recently, Vitamin D) since my gastric bypass surgery in 2001 despite taking daily vitamins faithfully since 1997. I didn’t realize that what they term “malnutrition” could cause this type of pain but he said it’s called osteomalacia. This online piece explains it the best.
The pain of osteomalacia is typically difficult to localize. All the bones are tender—especially the long ones in the legs and arms—because of inflammation of the nerve fibers imbedded in the lining of the bone (called the periosteum). When Vitamin D is deficient, the lining of the bone becomes activated, causing more bone to be absorbed and replaced at an accelerated rate. This is similar to the “growing pains” experienced by adolescents who are going through the growth spurt.
He also said that the numbness and tingling is probably peripheral neuropathy from my long-term struggle with low B12. He’s recommended more frequent injections.
Vitamin B12 deficiency can also cause nerve problems, often causing numbness and tingling that start first in the hands and feet. Hemoglobin is low, but red blood cells are abnormally large.
The good news is that the new drug, Topamax, seems to be working to control the pain. The bad news is that I’ve been struggling with these deficiencies for several years (starting with B12 in 2003, followed by severe anemia in 2006 requiring IV iron infusions) and injection or IV forms seem to be the only way they stay in my body. I’ve been on oral Vitamin D (prescription) since August and my levels are still low and, as I can tell you from the bout of torture a few weeks back, the pain is still really bad. So he’s raising the Topamax to a higher level and I’m going to switch to the expensive-ass specialized vitamins made for people with re-routed intestines for several months to see if they really make that much of a difference (we can’t absorb anything oil-based and we have to take a lot of vitamins separately throughout the day so it’s a big ‘ol pain in the ass, but I guess that’s better than a lifetime of pain, anti-convulsants and broken bones!) If my levels don’t come up by the end of the summer, we’ll look into going back to the hematologist or moving on to a gastroenterologist to see about more invasive gut-specific checks to find out what is wrong with my intestines specifically because only a small percentage of gastric bypass patients seem to have these problems.
Ahh, the foolish things we do to ourselves when we’re young (I was 21).
I was telling my coworker today how painful it was growing up because my friends used to make fun of my mother (she was morbidly obese) and we were always sad that she didn’t want to go outside and play with us. But here I am and I may not be morbidly obese anymore but when I’m in pain I sure don’t want to get down on the floor and roll around with Pumpkinhead or go outside and chase him on his bike. So if I can’t do that, what’s the point? Guess I’d better get with the program and get well, huh?!? On the plus side, I have lost about 10lbs in the past three weeks (hooray for the new meds that make you lose weight instead of gaining it — that and the stress/bronchitis diet!) Now to get outside and actually move my fat butt and sore legs down the sidewalk without hurting myself (Klutz Central here).
Finally, on the work side, things appear to be going fairly well. My boss has eased up since my supervisor talked to him. I’m not sure what will happen there but I’m glad the tension seems to be broken.
If you’ve gotten this far, thanks for reading my book. I have a very busy weekend ahead and am just glad to have a clear mind and a fairly clear head/nose to get it done! Lots of reading and research for a paper and I definitely want to have some one-on-one Pumpkinhead time. Poor little guy hasn’t had much Mommy time in the past few weeks.
P.S. I share all this personal medical information a) to keep a little log of it for myself because, after all, isn’t a blog just really an Internet diary of sorts and b) so that others out there who might be struggling with weird symptoms might read it and know they aren’t alone. There is way too little info out there on the long-term effects of gastric bypass surgery so, even if it’s rather embarrassing to know that all of this pain was brought on by something I chose to do eight years ago, I think it’s important to be honest about it so that others can make informed decisions or know what’s going on with themselves when doctor’s poo-poo their pain as “chronic fatigue” or “fibroymyalgia”.