I haven't posted for some time. I could say that I have been feeling better, but that would be dishonest. No, what I have really been doing is waiting. Mostly I've been waiting for my sister-in-law to be happily married. But I've been waiting for other things, too. I've been waiting to set some short and medium and long-term goals. I've been waiting to write out that ever-elusive bucket list. I've been waiting to see if I'd feel better on my own without having to go back to the doctor and deal with the poking and prodding and stabbing and testing.
I've also been thinking. And talking. And thinking some more. I've
been thinking about who I am and what I truly want to accomplish. I've
been thinking about what is important and what I can let go. I've been
thinking about my friends and acquaintances and family. I've even been
thinking about those of my readers that I've never met. I've thought
about wills and finances and endings. I've thought about hopes and
dreams and I've realized quite a few things - some of which surprised
Finally, I couldn't manage not knowing some sort of solid number. So I
gave up on waiting this thing out. I know the signs of anemia by now.
I've lived with it in one form or another all through my life. The
blood transfusions last year and early this year didn't do any lasting
good. Of course I was still bleeding then. But I've stopped bleeding
now, so there's no logic to why my hemoglobin levels would continue to
fall. The IV iron didn't do any lasting good, either. But I told
myself that it was pre-surgery and the drop after surgery was to be
expected. That's true. It is. What's not to be expected is for the
levels to continue to drop long after the surgery is over and the scars
are all that remain. So I went from having that magic number get up to
12 (still not close to the 30+ we'd like to see, but out of the
single-digit danger zone) to an 11 just before the start of the fall
semester. I'm now a month away from graduation and the numbers continue
to fall. Immediately prior to my sister-in-law's wedding (October
30th, the day before our 10th anniversary) I dropped back into single
digits with a 9. They re-tested because they were so sure they'd messed
up the test. I get that a lot.
The wedding was beautiful and I am glad that I went. My new brother is a
good man and my sister-in-law did right to wait for so long until she
found the one that was a perfect fit. The wedding also made me realize
how worn out I was. The wheelchair was my friend by the time the
wedding day arrived. But it was more than that.
The ice cravings are returning. The dark patches on my face stand out
in vivid relief as do the circles beneath my eyes. The headaches are
rarely interrupted. The restless legs are back in full force... as is
the insomnia. I'm experiencing episodes of confusion again and that
very unsettling feeling that comes from knowing that I know something,
that tip-of-the-tongue word or phrase or idea, and having it slip away
as though it never existed. I am once again having to read books two
and three times just to follow the basic plot. I am terrified that I
will get to my final exams and have no idea what any of them are asking.
The latest test had me at an 8.5. Down half a point in two weeks. That
was a week ago. If this trend continues I'll be at 7 by graduation.
6.5 by the new year. 5 by my birthday. 4 in March. The expectation is
that sometime after this point my body will go into crisis mode. As my
hemoglobin continues to drop, my oxygen saturation level will fall, my
heart will struggle to pump harder to keep me going and will either give
out or slowly give up. I expect that there will be pain involved.
Don't mistake my analytical explanation for a lack of concern, an
absence of fear or peaceful acceptance. Well, maybe there's some
element of peaceful acceptance. I know what I am unwilling to do to
sustain my life. I am unwilling to have marrow samples taken. I am
unwilling to have any more transfusions or iron IV infusions. I am
unwilling to go through chemo or radiation treatments.
What does that leave? Well, I'm using supplements that may enable me to
maintain a level of 5-6. I'm regulating my food consumption. I'm
meditating and utilizing self-healing methods. I'm controlling my pain
primarily through visualization techniques augmented by the occasional
tylenol or ibuprofen.
I'm trying not to let fear or panic control me. I refuse to let this
illness keep me from accomplishing the things that are most important to
me. I'm working with my professors to let me write my final papers a
little early - and perhaps take my final exams early - while I retain
the majority of my faculties. I am setting goals and working toward
them. Not just long term goals, but those ever-important medium and
short-term goals as well.
Right now my goal is to graduate. I will be the first in my family with
a BA. So many of my brothers started college and fell just short of
their degrees... I need to show them that it can be done. I need to
show myself that it can be done.
After that, my goal is to see my son in person again. It's been almost a
year and I miss him. I'd like to go visit him in Louisiana, then go up
to Missouri to see my mother and two oldest brothers. It's been too
Another goal is to get an online business started - something that my
husband will be able to continue regardless of my outcome. That one is
in the works, it just needs a little push to get it going.
I joke and say that my long-term goal is to go to Burning Man in 2012,
but that isn't entirely accurate. It would be fun, I'm sure, but
honestly what I really want is to experience that sort of freedom. To
live in a way that doesn't leave a physical trace. To give freely. To
love wholly. In fact, I hope I already do those last two.
So, for a little summation. The best guess is that I'm experiencing
some sort of chronic hemolytic anemia. The marrow just isn't doing it's
job correctly anymore - after years of being under horrific stress, I
kind of don't blame it for giving it up as a lost cause. I'm not
looking for sympathy or pity. I'm not trying to come off as heroic. I just want to live as normally as possible for as long as possible.