I
thought I'd just scribble down a few words here before I go to bed
for my Sunday check in. You see, it's 5:00 a.m. on the east coast of
the United States, and here I am, the infernal bat, unable to sleep.
I haven't written much about my Parkinsonism, or my e.t. or essential
tremor or “Parkinson's Lite” as I call it, because the disease
doesn't have me, I have it, and by the throat if you will. It does
not define me. It does however, have its moments of just pure
meanness. It won't kill me, although before Primodone, there were
times when I wished it would and in haste.
What
it doesn't do is let me sleep well. I have never been a restful
sleeper and I have never been a cheerful morning day-type person. My
mother was. 5:30 in the goddamned A of M, she'd be up, perking coffee
and singing with the birds and I wanted to go out and practice my
non-existent skill of skeet-shooting on her and her little feathered
friends. So, we differed in that particular behavior.
I've
always been a night owl and as I grew to adulthood, music, besides
being the love of my life, was a great career, seeing as how the
industry, such as it is, had the decency to never start a rehearsal
before 10 a.m. Concerts were always in the evenings, or afternoons in
the Opera, and when I worked in IT, I usually worked late afternoon
shifts. It's been decades since I've had to live by an alarm clock,
and thank the Christ, the few times I've actually had to get up for
something, it was usually an operation or some medical test, that was
going to render me comatose, so I wouldn't care how miserable I felt
until 3:00 p.m.
I
like to tell people, “Yeah, I get up at the crack o' noon,” but
sometimes, it's as late as 3:00 or 4:00. When I first started taking
Primodone for my Parkinsonism, I was sleeping almost around the
clock. I thought, “Gee, this is terrific! No more tremors, but then
how would I know? I'm not awake enough to figure out if they're there
or not.”
As
my body adjusted to the drug, I began to sleep more like a normal
person, or at least I was hibernating less. I'm not sure what it was.
But, I found that as I did more and more, I still needed that 8 to 10
hours of sleep; that helps tremendously in keeping the tremors at
bay. The “inner core” tremor is the most horrible feeling in the
world, and when I'm tired or anxious, it comes back. Sleeping, and
eating, walking and exercising help all of that. I still have no
sense of smell, which on Nebraska Avenue, may be a good thing, when
we have one of our ferocious rains and the sewers back up. I really
didn't miss that lovely aroma over the summer.
As
I walk and continue to get stronger, I amaze myself. I am not
supposed to be able to walk briskly for three blocks carrying 19
pounds of crap from the Dollar Store, but I did just that very thing
today. Because I have COPD, and have had the lung function tests and
was told that I had a lung capacity of 43%, I thought, well, shit,
some day I am going to be on oxygen, but now, I wonder.
I
stopped smoking over 3 years ago, and I take Spiriva religiously.
Because of our stupid health care system in Florida and the United
States, even though the State of Florida and Hillsborough County
spent upwards of 500,000.00 dollars getting me back on my feet and
walking in 2010, when I was awarded my SSDI, I had to wait 2 years to
get anything resembling health care coverage, and I was unable to
have anything done about my COPD, so left untreated, it worsened.
Thank you, Rick Scott, you prick.
Well,
now, I find, that after nearly a year of treatment for my COPD, my
lung capacity has increased to the point where I run out of my
Spiriva inhalant before I run out of lung capacity, which means my
lung capacity has INCREASED, which I do not think is supposed to
happen. But, there are lots of things that have happened to me, that
were not supposed to have happened; per my physical therapist at TGH,
it was unlikely that I would walk again. I'm all over the place now
and stronger than I have been in decades. I think it's reverse
psychology. DON'T tell me I cannot do something, because I will prove
you wrong every goddamned time. I'm not a quitter; I have the
capacity to think strategically and think about things and stick with
something for the long haul. It's the persistence of persevering over
time.
I
find it to be the same thing with writing. Crappy passage? Go back to
it later. If something is not working, I think for me, I need to
leave it alone and go to another well for inspiration and come back
to whatever my particular roadblock is later. If I continue to
frustrate myself, it just gets worse and I lose my voice. With that
in mind, I've found that it makes the editing process a little
easier, but messier, as I am not the most organized person in the
world.
So,
that's my check in. It wasn't the best week, but I got something
done. I hope everyone had a good week. It was freezing cold here in
Tampa, and astonishingly enough, it made me yearn for the frozen
tundra of Michigan and Lake Superior with my Daddy. Ah, he was
something else.
4 comments:
I know what you mean about not being able to breathe. I, too, grew up in Michigan and am in this god-forsaken swamp called Florida. I didn't get health insurance until this month, so I've been treating my borderline asthma with caffeine. So far, it's been working.
You're right about Rick Scott being a prick. And a crooked one, at that. Didn't he get fired for Medicare fraud from Columbia/HCA? It was touted as the largest Medicare fraud scheme to date. There was an article in the Miami Herald. Time to pink slip him. Don't know if you watch the news, but I've been noticing that when he is asked a question during an interview, more often than not those answers have nothing to do with the questions.
He needs to go. Time to vote someone else in.
I'm so happy that you are feeling so strong and capable these days. My first fiance died of cystic fibrosis when he was 32 and I was 25. He wasn't diagnosed until he was 27, so his lungs were very badly scarred by then.
He used oxygen full-time, and said that he could never relax; breathing was too difficult to allow it. It wasn't until he died that I really understood the tension that had always been there.
I'm very happy you're finding breathing and moving more comfortable!
@Lara,
I want to thank you so much for visiting. My breathing problems were brought on by myself; smoking being the culprit. My mother died of Emphysema and COPD at the age of 70 and she was much, much worse off than I when I was diagnosed. I like the idea of treating with caffeine, but I play viola and I would sound like a machine gun! I tend to avoid caffeine. The whole health insurance thing in this state is a mess; it may be as big a mess in other states, but Rick Scott is responsible for much of the Medicaid wait and all the rest.
I know he's crooked and his cronies always end up doing much worse damage; they're raping the state. I don't know if got for fired for the Medicare mess, but he owns a corporation that makes medical devices and procedures that are tested on prisoners in the Florida prison system. The death rate I understand is rather high. I don't watch the new, but read HuffPo and they pretty much have a WTF Rick Scott section. Lordy, vote him out? Line him up against a wall and shoot him. Thanks again! Mary
@Shan,
Oh my dear Shan, I am so very sorry. You have had some very hard and tragic events in your life. To lose a young man, your fiance must have been difficult indeed. I have never lost a spouse or significant other in that manner, so cannot possibly imagine the heartache.
When my mother was on oxygen, she said the same thing, she could never relax. I have times when my lungs will feel full, or even restricted and I feel tense then, but when I make a conscious effort to relax, that tension eases.
I find it interesting that we're told one thing by the "medical establishment" (COPD never gets better, you'll eventually end up on oxygen, etc.) and yet, with less than a year's treatment, I am able to draw a full breath.
Admittedly, I tire quicker and am short of breath quicker than before, but I went nearly 3 years with no treatment, so I am hopeful that I can resume a normal life. Walking 2 miles a day with no ill effects seems a miracle; one I'll willingly take!
As always, it is a joy to hear from you and I'm happy you share my little triumphs. Again, I am so very sorry about the loss of your fiance. Love, Mary
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