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| naam: | Geobell | | latijns: | chrysolina staphylea - bruinrode goudhaan | | features: | desperate character in life or death struggle..............I may be having a really serious problem right now: my finances, bank account and bills (telephone and rent)are at least presently beyond my grasp. I don't think it's irretrievable yet, and I have to do something about it.
I would rather do almost anything else... I hate trying to explain myself.
But it is, unfortunately, potentially embarrassing though it may be-
polite and necessary.
To explain myself:
Since 1995 I have been taking injections of Interferon to control(somewhat) multiple sclerosis exacerbations.
It couldn't be avoided finally, uncontrolled exacerbations were life-threatening.
Unfortunately, interferon only slows the progression of MS.
I still have exacerbations and sometimes extreme symptoms.
since '95:
I'm spastic. That's basically my problems.....
spastic fingers make it hard for me to write; spastic eyes make it difficult for me to read.
FINALLY, my computer is working properly...wonderful, after more than a year.
And I have speech files that work at last (with the stutter and slurs) so that I can talk and let the computer type. No excuse anymore, here we go...
Being spastic is difficult, different from day-to-day;
often terribly painful as muscles work against each other
and never the way you want...
I try very hard
I've been working, exercising, in training forever...right now
I have to spend extra time stretching and strengthening my hands.
They have become dramatically more spastic lately-and I have to fight to control them at all-painfully tightening up.
no guitar, no piano, no keyboards, no flute
no writing, trouble with the toothbrush
very careful with cups and plates.
on the +
I have learned to use the computer to a degree
that surprises me.
And with a voice control (DRAGON naturally)
can run the recording studio
communicate through e-mail
[paying bills still presents some problems]
I often wonder what it would be like---
if there were a ''MIRACLE'' cure for multiple sclerosis
and all these ''symptoms '' suddenly went away.
if I could just lose some of the physical problems, I think I could be a very competent musician, at least.
and
if memories(short-term and consecutive) and mental processes (logic and concentration)
started to work normally,
or even as normally as it did 10 years ago;
I'm overwhelmed (HOPE)... I'll settle for any help I could get.
Avonex has helped, reduced severity and frequency of exacerbations...
until a cure comes along.
While I'm praying for miracles, all of us NEED a few new medicines.
Sooner or later we all will need a safer, better painkiller.
I need one now, I'm not supposed to use Tylenol anymore. I've used too much.
Opiates are no fun, at least not the way I use them.
And we need a safe and sensible energy booster. Not amphetamine,
not cocaine...no speed, no rush and no high.
Something safer than caffeine and a little stronger.
AND
I suppose the world has to have some sort of
instant attitude adjustment.
I feel incredibly lucky that I am not prone to depression.
I have felt deep depression several times. I remember particularly the black hole I fell into when my mother died. Perhaps I learned from her a sort of
emotional discipline.
So, miraculous medical mood-altering would be a true blessing.
It's truly wonderful to live in a time
when science and medicine, American inventiveness
and human society
can do so much to alleviate suffering,
and even cure ailments.
Just imagine living without eyeglasses if you're nearsighted.
Although laser surgery may not be a perfect cure, it's an improvement.
And you can imagine, now, soon, physicians may be able to re-grow an eye, or fix one that doesn't work right.
EVEN (and here's a real fantasy) a third or even fourth set of teeth.
What a World! Thank you, everybody.
I had better tell you how I've been living.1995/1996 I had a severe attack, exacerbation, whatever. Got rapidly worse, life-threatening...corticosteroids,
extreme situations. Maxed out the insurance, credit cards, family and friends.
Was divorced and thereby avoided maxing out my wife and her family.
It was very upsetting for my son and daughter.
It took most of the year for the doctors and my body to agree on a truce of sorts.
By then I was living in my Volkswagen bus, or staying with friends.
One side of my body was working at about 30 percent.
A smart neurologist put me on Topamax, a very strange drug which reverses the functions of the two hemispheres of the brain. I won't even try to explain what this was like. I struggled and exercised for more than a year with first one side working and then the other until finally I could stand up with both sides working at about 60 percent. Difficult therapy, but successful... I still have two functioning legs, two arms and reasonable balance... and eyes, I feel pretty complete.
I'm terribly heat sensitive, unfortunately.
If I get even a little overheated I revert to paralysis and dull idiocy. Incapacitated and embarrassed.
When I was taking Topamax I lived in Tucson Next to University Medical Center
but I have usually lived on Mount Lemmon.
For the last two years I've been learning to operate digital audio equipment,
this computer and various programs. I hope to be able to continue working, producing music, etc.
My friends Pamela and Marty operate The Mount Lemmon Cafe.
They have been very cooperative, changing their operations so that
I can have a job, two hours of physical labor daily,
appropriate to my need for exercise.
The most I can do, but it's good socialization too...
the cafe also helps me with shopping and transportation.
I hope that work with the computer will soon provide an income.
At this time, Social Security Disability pays me about $600 a month.
The cafe pays about $400 a month.
My rent is $550 a month. (I'm late this month, as I often am)
The Telephone is all messed up. Qwest is not too proud to rob a blind man.
They've taken advantage of me in my situation, I suppose that's inevitable
when every service call you make to them
puts you in touch with a salesman on commission.
It's a complicated mess.
Last summer, we were evacuated from the mountain because of a forest fire.
I had a wireless telephone and tried to have it activated to use while we were in Tucson.
For several weeks they had network problems
and couldn't get the phones working.
Meanwhile, it was a very hot summer and I got quite ill.
I paid some ridiculous bills, I found out that the ''Disabled Help'' available online
just clicks through to the sales office;
I keep trying and only frustration results-now a collection agency is sending me a bill.
Propane is the cheapest heat on the mountain.
Filling the tank however, still very expensive...
AHCSS and Medicare have been paying my medical expenses;
I'm very grateful.
Every year in November or December they run out of money (I understand)
and kick me out of the program.
So far, I've been able to get right back in.
It can be a desperate situation, and will be this year again.
I have to take an injection of Avonex every week. Very expensive.
This year, painkillers are very expensive. I'm taking a ridiculous amount of painkiller, it's a trap everybody hears about but some few of us cannot avoid no matter what. I fight constantly keep my doses down, for lots of good reasons.
My other expenses are absolutely minimal.
I'm always trying to write the all-purpose letter.
It has been an effort to write it all...I have to train this dragon to type, don't you know?
I started this letter more than a month ago because I realized
that I was going to have to ask someone for help sooner or later.
And always, people can look at me and see a ''good-looking''smiling guy.
Even if I'm obviously ill, I often minimize my problems
take a positive attitude
and forget to solve anything.
I really hate to complain-and if I go down to an office in town
to deal with the problem
70 degrees can be warm enough to start a downward spiral
Stress, embarrassment and the effort involved
can make me seem like an Alzheimer's patient, confused and upset.
So inevitable misunderstandings must be tolerated... it's time to put on some sort of armor and brave all the readers' prejudices.
I just barely stomp around these days, but have always been a dancer and, I guess, I always will be. When I cannot speak, a musical instrument's voice must be mine; any instrument will do, in a pinch.
No matter what I do, how I explain myself, there are people who will see me as a complainer and dismiss what I say as brain-damaged rant. Oh well...
what follows inserted is a list of complaints:
bad teeth are a real problem
brain doesn't work right
a.memory scrambled
B.interferon injection once a week
fever 1 to 2 days after injection
frequent nausea,
Unfortunately, the interferon doesn't prevent seizures,
which brings me right back to:
bad teeth (over the past several years, thousands of dollars in dental work destroyed by teeth clenching in seizure)
C. brain doesn't work right-really pretty much sums it up; I'm having a lot of trouble with the right now that
Long ago, I assumed that everyone was pretty much alike on the inside; that I was somehow typical. Not so, I'm very strange. My life has been very difficult. It became obvious more than 40 years ago that I would have problems... my left eye and right side simply stopped working one day. With time and exercise I got up and went on with ''growing up''...
On no particular schedule, parts of my body and brain would tangle and fail... memory, eyes, ankles, fingers and years have gone by sometimes registering, often not registering... I have always tried hard to do my best, but I am afraid that with these disadvantages I have often been a chaotic force in my life and that of others. If my confusions have caused you problems or pain, please forgive me. I try not to feel guilty, although in severe disappointments and personal failings I'm not trying to avoid responsibility.
I have had a wonderful life, believe me.
Really, I have.
I don't know who I have sent this to, but if you're reading it
it must have been you.
Thanks for listening. I have faith, or at least hope-that everything is turning out all right. If you help me out in any way, I really do appreciate it.
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