Health update and goals

Sorry it's taken so long, but there wasn't anything to report on the hemoglobin situation until this week. My GP simply did another blood test (Hb still low), told me to take double the Prevacid until I was checked for an ulcer, gave me hemocult cards to check my stools for blood (big negative there, thank your Higher power), and referred me to the surgeon. I saw the surgeon this week, and he was at first as confused as I was about why I was there. He called my GP so they could consult, and they came to the conclusion to check my esophagus, stomach, and upper duodenum (first part of the small intestine) for an ulcer using a scope and to see if my uterus is building up too much lining during my cycle using a sonogram. I do the sono on Tuesday and the scope on the 30th. The surgeon said if he had to go to Vegas and bet money at the Anemia Game, he'd put his money on my heavy periods combined with the coumadin I'm on for my November blood clot.

Interestingly, my friend Lance (who also has SMA and is a year older than me) emailed me a day or so later with another possibility that, though slimmer than the period/coumadin cause, is something I should still be aware of and get someone (whether my GP or my pulmonologist) to monitor -- hypercapnia, or high blood carbon dioxide. I don't think high CO2 will cause low Hb, but it can cause the symptoms of low oxygen in the tissues if its concentration is high enough that it occupies more Hb sites than does O2. He pointed out that while sleeping with O2 at night will increase my blood-ox levels, if I am shallow breathing while asleep (and I do to some degree), I may not be eliminating enough CO2 upon exhaling. His youngest sister (who also had SMA) did this, and she may have died because of it (if I read his email correctly -- please correct me if I'm wrong, Lance).

So, I'm practicing breathing more deeply, because I have stuff to do before I kick the bucket.

In other news, I'm suffering from strained muscles in a couple of toes on my right foot after they got caught in my jeans while dressing the other day and were hyperextended (well, for me). It's a darn good thing I don't walk, because those little piggies go "wah wah WAH" when they're bent backwards.

So, drastic change of topic -- seemingly, but hopefully my change of approach will become logical in a moment. We found out a few days ago that the monument company had "snuck out" (meaning, they didn't call my dad first as he had requested) and set my brother's headstone on July 3. My dad was a bit peeved because the main reason he wanted to be notified was so he could meet them at the cemetary and get them to lay the foundation for the stone longer than necessary and set the headstone to one side rather than centered. Fortunately, the setters had gotten the memo. We went out the day after learning the stone was set to mount a Celtic cross on the foundation next to the stone.

Going to my sister's and my brother's graves made me pretty morose for a while that evening. It's been seven and a half months since Paul's death, and I'm still dealing with anger and depression. Then a day or so later, my friend Edie emailed to ask if I'd ever seen pictures that were taken when my folks accepted P's posthumous master's degree. They also received my sister's bachelor's degree in the mail a few months after her death. This got me thinking about my current Ph.D. endeavors and stupid little health problems. I mean, they always start out stupid and little, right? I wondered if these health problems of the last two years after more than twenty years of nothing serious was just an accelerated opening act to my own dropped curtain.

But there's something here I'm really truly down in my soul starting to realize -- I want to be alive when I receive my Ph.D. I want to have to scrimp and save for the gown and hood so I can go across the graduation stage, flipping the bird to SMA. I want to do the General Exam and the dissertation defense, as scary as those are, and I want my parents there and at the graduation. I want to see my work published and referenced. I want to get a job and drive students nuts with the things I want them to learn. I want them to think I'm either extremely enthusiastic or just a bit bonkers as I extoll, "Mendel rocks!" I want more and more people to not think it's a big deal to have a teacher sitting crookedly in a power wheelchair who paces while she lectures.

So you see, I'm far from done yet. I have all those things to do, but not just for myself anymore. Now I'm doing it for my sister and my brother, too.

Oh, what a stressful, crazy, amazing, rewarding thing it will be!