Just
My Un-Blog of A Life Disabled
1988 thru. 1992
Occasions
of extreme weakness while playing tennis, basketball, hiking and mowing
yard. A slow down in mental processes, noticed at work and writing short
stories. And the onset on a generalized fatigue.
1992
July
- (2 days playing ball in 90+ heat) Woke upp unable to move left leg and left
arm. DR. Donald Cohen Armonk, ny put me back in Northern Westchester Hosp
for more tests. And Mri's. Diagnosis still indefinite, found only one small spot
on brain Mri. Only one antibody on lumbar puncture. Blood tests showed Lyme
negative.
Went
to Neurologist DR. Carl Rosenkilde in Mt. Kisco, NY. Lee, & arm
came back to 98% normal after week.
August
- Testing continues with evoked response teest of body. Showed Blockage.
Additional Mri's. Mri's showed additional spots. Diagnosed with Multiple
Sclerosis.
September
took additional MRI. During Mri Had a lot of stress as I had to urinate
but they wouldn't stop test. (Two days after test I woke up unable to move my
whole left side of body. This included
my face, mouth and tongue. Took first IV Steroid course as out patient at
Northern Westchester. After I year about 65% of loss of movement symptoms
abated. Had to use cane since,
September
- Went to MS Comprehensive Care Ctr. In Whiite Plains, NY and saw DR. Ute
Traugott.
Additional
Symptoms were Spasticity, Fatigue, hyper reflexes, extreme fatigue, swallowing
problems, jumpy legs.
1993
May
- After gaining back about 65q' of movement Fatigue, Spasticity, and
Mental processes all got worse. Went for in
Hospital IV Steroid treatment at ST. Angel Hosp White Plains. No Change
after treatment..
June
- Quit work and applied for State And Federral Disability on Advise of Dr.
Traugott and inability to keep up with work.
1994
May
- 3 attacks foiled by 2 days after 2 day sttomach virus. Symptoms slowly
decreased after approx 2 weeks. Increase in spasticity, dizziness &
fatigue. Taste buds affected. Affected walking; less durability. Walking reduced
to1/2 block max.
BETWEEN
ATTACKS-. though very tired trouble falling asleep. When reading spasticity
increased.
1994
August
4th attack not sure what set it off Increased spasticity, dizziness,
fatigue & affected bowel. Mobility decreased. Slowly symptoms reduced.
After
worsening of symptoms went to St. Agnes Hosp White Plains, NY for course of IV Steroids.
Steroids didn`t seem to help.
1997
Cholesterol
test was 265 was put on Lipitor 10 mg a day. Complained of weird jumping
in chest. EEG neg in dr's office. Dr doesn't worry about it.
Neurological
Symptoms seem to very slowly be getting worse, Dr. Traugott won't
diagnose me as Secondary Progressive because of Insurance requirements
for Beteseron.
1998
October
Sudden Extreme Change in taste buds. Lost 20 Lbs. Learned to Change My diet.
From Steak & potato's to spicy foods Also will now eat susi though not raw.
Change has remained to present date.
1999
Had
Heart Attack. Stent put in at Hackensack Hosp in New Jersey. Dr. Innerfield
became my Vascular Surgeon. Second blockage was very minor so dr held back on
putting in second stent.
2000
September
- Diagnosed with Avascular Necrosis. Failedd Stress test.
Put
in hospital with 90% blockage to heart while waiting for a spot on Dr.
Innerfield's schedule. Finally had
second stent put in. DR. Innerfield was very surprised be quickness of
second blockage.
2001
Had
Partial Hip replacement done at Westchester Medical with Dr. Steven B. Zelicof in
White Plains, NY.
July
- Had Core Decompression for second hip in Westchester Medical by Dr. Zelicof. Nurological
symptoms still seem to slowly be getting worse
2002
Purchased
electric Scooter as wife was no longer able to push me without injuring herself.
And couldn't walk with cane more then I block.
2003
Diagnosed
with a Abdominal Aortic Aneurism of 3 cm, on a follow-up CT scan for a kidney
stone.
2005
Aneurysm
has slight increase in size. Dr. Innerfield to check it every year instead of two.
March
- Seeming onset or extreme increase in periiods of extreme shortness of breath. Pulmatory
tests, echo and ER blood tests are neg.
Went
to local Nurolgist Dr. London of West Nyack, NY for a new Brain Mri. He just
said there were no new lesions shown.
September
- Shortness of breath returned. Went To Seee New Multiple Sclerosis Doctor
as old one was no longer on insurance. Saw Dr. Charles Smith Now at New MS Center
in White Plains Hospital. After reading Brain Mri He said he wanted to confer
with other doctors as he felt placement of and amount of lesions were not
indicative of MS.
2006
January
- Took Dr. Smith that long to geet back to me. He Said he thinks that
my lesions were both clusters of burst
small vessels and strokes. He believed that I had some vascular disease.
April
- 30 plus blood tests some genetic were alll negative but for a slightly high homocystine
level. For this he prescribed Folic Acid. He said that I do not have a Vascular Disease.
Went to Dr. Sandra Costley of New City, NY to have 3 more blood tests. All were negative.
April
- Had MRI of Brain to see if there were anyy increase in lesions over last year. Results
were No Change.
May
- Saw Rheumatologist a Dr. Meyer of New Citty, NY. He Had further tests he could
think of Wasn't able to get in touch with Dr. Smith. Has a visual evoked
response test at montefiore Hospital Bronx, NY.
May
- Had Thoracic and Spinal MRI's.
June
- Dr. Smith cancelled his appointment with me. As I could only contact him by e-mail,
his staff never gave the doctors my messages. Frustrated I
demanded a diagnosis.
His
e-mail says I have Strokes not MS. Diagnosis didn't help explain my continuing worsening
symptoms.
June
28, 2006
It
seems that three Neurologists all felt that my history & symptoms present as
progressive Multiple Sclerosis until they look at MRI's and then say I have had
multiple strokes over the last 13 years. Two Neurologists and my Vascular
Surgeon feel that it isn't Vascular Disease. As all blood test were
negative except for a very slightly high Homocystine level. Having a
unknown Grandmother on the French-Canadian side die in middle age of Stroke and
a father who stoked at 65 with 3 more TIA's since. Though he is 82 now and
extremely healthy. The Top Neurologist feels it is Genetic. I also
had two Heart Attacks and a 3.5 cm Abdominal Aortic Aneurism, along with
Avascular Necrosis, though the latter is probably from five intensive IV Steroid
treatments over the years. Also note that I never did well with the steroids and
seemed to get worse with the last treatment. This implies against
Autoimmune Disease. And so after 7 months of testing I'm going with yhe
conclusion of the Head of the Columbia Neurological Institute in NYC, and my non
MS Neurologist's diagnosis that I have had multiple Strokes due to Genetic
tendencies. Most a strokes re on my right side but a few are on the left.
And there is a couple on the Ganglion. It seems that my symptoms are very
reactive to my environment partially due to the number of strokes. Also it
seems I should be more messed up then I am for the amount of strokes. This
might explain why I present like MS. It is lucky I started out with a
overly functional brain.
I'm
naming my disease Billy Bones Disease.
After
7 months I'm real bored with my search for definitive answers. Time to get
on with life. I'm going with the most probable guess. I'm sure the result
is strokes and I'll probably never know 100% the cause. I won't ever
become un-disabled but I'll try to keep stable
July
28, 2006
Well, reality need not be too stable. It seems that my Arotic Anurism has
grown to 3.8 cm in the last year. That's ,8 cm in 2 years, much too fast.
So now, my Vascular Surgeon feels that my genetic disease isn't just in my brain
but is a vascular problem. And he feels that fixing it with stents is the
wrong way to go. Major surgery. Not yet, but it seems to be getting
sooner. Let's hope it is done before the aneurism goes POP! I know
no one's probably reading this, but excuse the fatalism anyway. Why bother
unless you live free, until. All the words unwritten, or really un-given.
I'll probably suffer for a long time yet.
May
31, 2007
Past few months saw the appearance of new symptoms.
My right arm and hand, which has been seemingly unaffected, has been
experiencing weakness and tremor. All three times the symptoms lasted less
then 8 hours. I can notice the possibility of these symptoms or the
slightest of remaining effect. And as I was told by all my neurologists,
if I have any problems I should go to an Emergency room as they can do no more
until they can cut up my brain. Also a recent visit to my Vascular
Surgeon, he restates that he doesn't think it's vascular disease, though he is a
great surgeon but doesn't know the brain. So maybe it is an abnormal
form of Multiple Sclerosis. And regardless of TV shows like House trying
to help the drug companies, Interferon's don't get you better., just if you're
lucky they might slow your symptoms and i'm not lucky. And all the MS
drugs never helped, only hurt me. Anyway the Aneurism is momentarily
stable at 4.2 cm, but we'll see at 6 more months. No one to talk to, just
have to be my own doctor. My art still speaks with the universe, so what
the F**k!
September
24, 2007
The
problem is that I don't really have a diagnosis for my Brain. Even though
i have an MRI with more then 16 lesions it's like a ghost disease.
Example. Ignoring a weight on my chest, increased arm pain, shortness of
breath and dizziness for three days. When I also grew Clammy and a touch
ashen I felt obligated to go to emergency room (both my vascular surgeon and
neurologist have conveyed that it is my only recourse if anything feels urgent.
Against my better judgment I went. I somehow convinced a nurse to take my
symptoms serious and not to leave me waiting in line. The doctor wouldn't
even consider another brain aneurysm or small stroke. 6 hours and he said
that I had no heart damage. Agreed it was good and maybe necessary to know
but if the brain's vascular system was fucking up, hey that's just my problem.
Ekg showed variation from norm which could now be normal for me after previously
problems and nitro patch seemed to abate symptoms slightly so he advised to see
my vascular doctor and have a nuclear stress test and just ignored the brain
keeping saying I have MS, could convince him different. Well forced a
appointment with Vascular surgeon's office, but he was going away for a week, so
saw a associate. He concluded that no heart blockage problem appeared
imminent so he said his appointment girl would give me an appointment for stress
test. She offered me one in two months. I forced her to squeeze me
in in a week. Symptoms still remain and have now moved to both arms and up
into throat. They are not quite as bad as they were when i went to the
emergency room buy they remain. So anyway to the present, I just got
a call telling me my doctor can't be there for my test so it will have to be
rescheduled. It is now a month away. Why, well they know i have
problems but being i have no real diagnosis they are not taken into account.
My heart attacks are separate from my abdominal aneurysm and well, my brain they
can't, well they don't do brains. Well neither do neurologists. They
just diagnosis if they can and send you away. A blockage or such to the
heart can be easily fixed, but I have to hope it's the brain as I can't spend
another 4 weeks trying to judge if my symptoms are heart related., which require
something be done. or in the brain which means no one but me cares but
could be a sign of a failing vascular system which could also be in the rest of
my body, requiring less compliancy by my doctors. If only I knew I might
receive better treatment. Or not! Anyone who has an undiagnosed
disease I sure understands. Well, four weeks and I have to hope that my
problem is really untreatable. In 2000 I went through a similar situation
and it wound up that I had a 90% blockage for seemingly for no reason, but that
was seven years ago. They think what are the odds. I guess I just
had to complain to nobody. It's not death but additional disability I
really worry about.
October
31, 2007
Finally had my Nuclear Stress Test a week ago.
And the results are that there is no sign of blockage, so that it must be
neurological or maybe I'm just insane. So it seems that my stents are holding,
which is a bit lucky and a bit due to having the best surgeon in the area, a Dr.
Michael Innerfield. (I think that he is starting to think I'm crying wolf.
He doesn't deal at all with the brain, oh, well! As for my symptoms, just more
weird symptoms I have to live with. Though it kind of sucks that they so
closely mirror those of a heart attack. If it was a blockage it could be fixed
but would be a sign of? vascular or some sort of weakness which could return.
So do I search for a Vascular Neurologist or just continue on my own. It
would serve me no purpose unless I could find someone close enough to drive
myself (10 miles) or take a cab. Next time I don't think I'll go to the
Emergency room, unless I collapse, I'm not being depressive but realistic.
Besides Nyack Hospital Emergency might save you but it still would be just
barely worth it. And it seems that they just ignore my type of brain
disease. (Can't really blame them as I don't even know what I have.
Ask anyone who has a real chronic illness and you'll probably find that they too
get bored thinking about it. It is always there and only exciting when it
tries to kill you. So I say fuck it, at least until the next new and
exciting symptom. Next 2 months I check the size of my Aneurysm (CT Scan,
fairly quick and easy) and then I try to live as normal as possibly for another
year. At least I can try to push myself past easy again, not that I get
too far. But I'll take whatever delusion is allowed me. Yes I'm
bored, here's hoping I won't be rambling about this for a long time. So
continues my silly soap.
April
30, 2008
Funny, one would think that after 15 years of
being disabled while only getting worse in slow motion, that one would become
used to it, or even resigned. But it really, really sucks. how can
one ever just accept the loss of who you or really of what you should be doing.
just finished an illustrated book for a new to be mother with illustrations
stolen from the internet and changed with coreldraw & adobie photoshop.
the poetry and visual concept walks this side of art, but as i have never had
any visual sense i know the illustrations are mostly illusion. if i was
healthy, i would be in a position to have found a real artist to walk the magic
with me.
maybe i feel lost partially because i can't find a local neurologist willing to
see me. my vascular surgeon recommended a dr but he belongs to the group
of my last nuro, who doesn't care to deal with me, and it seems that if you see
one then the others won't take you even if the first one can't deal with you.
just someone with knowledge to talk with as symptoms increase. i know it's
silly to let my weakness bother me as it seems no one can help. i guess
the universe wants to keep me unique and alone, as i start to fade away.
one would say i'm depressed when i explore the appearance of a slow growing
awareness of a whisper in the silence that rides deep in my soul. i think
i pay attention to these feelings because before i got sick, i know one might
not believe me, i was never wrong about a feeling of impending realities, beyond
myself. but it could be just part of getting older and having to live past
the death of others close to ones heart, though my first death was in the sixth
grade. a teacher i was close to passed. another in college, followed by a
young girl i was starting to know. and from there life and death followed.
never felt the urge to cry at any passing, as so is life. we all die. and
i've known others who lost their first person, who was a parent. so maybe
not.
anyway i've been feeling the slight winds of death flying near recently. and not
my own, i think the universe plans to torture me for many years yet. if i was
healthy i know, though none but those who knew me before would believe, that i
should be able to see from where this banshee cries. not that it ever made
a difference to the fall of reality.
it's like being lost in a cave, in a silence and all your years running amuck
across the light of your soul. as many try to point out, i've just become
normal like most people. and i should be satisfied with all my previous years of
light and magic. oh, to have the strength to run amuck one more time, i'd
give the rest of my life easily. but life runs as life will. reality
always wins out in the end. but my moments used to be so... and so many.
still as i'm not depressed anymore then i must be in my situation, i'll keep
carving my little pieces of art. for when you're alive well, what else can
one do but live. for when you're alive well, what else can one do but
live! just rambling.
.
December 23, 2008
well, as expected my Aortic Abdominal Aneurysm has grown to the point where it
is time to deal with it. My last Cat Scan showed it is now at 5.1 cm.
i had a feeling that it would be sooner rather then later. I'm listening
to a fairly recent folk singer Antji Duvekot at the moment, one would think it
would be muddy waters or some old collection of 60's songs, but hey it is what
it is. Poor doctors always thinking everyone must get depressed over bad news,
though i suppose that most do. It's not that i'm not depressed or even
happy that i get to be cut open and spend time being the center of too many
peoples attention, it's just that hey, i knew that it was coming and deep inside
i've always just rode the wave of life. and i hate wining which luckily my
daughter never did. when you no longer have a choice on how to act, this
is rare, and so makes life somewhat easier.
also
having a doctor (surgeon) who is smart and you trust helps, though he won't be
the one cutting me open as he specializes in stents and i believe i have to be
cut for this fix. but he knows of a competent surgeon, so that is at least one
worry i won't have. believe me that would have been my biggest worry (thank for
spell check). weird, at 20 i would haven't thought twice about an
operation but now that i'm older with less life to lose it does bother me.
i probably worry more about hospital treatment then the surgery. on the
other hand i'll just make sure i'm approved for pain meds before i go in, this
way a nurse shortage won't leave me in pain until a doctor can show up to order
it. as for infections well let us hope to be lucky.
in perspective, i'm lucky to be living where i can be fixed and not like 3/4 of
the world. plus i will no longer have to ignore feeling my pulse beating late at
night below my belly button. my father had the same operation a few years
ago, he was in his upper 70's and he survived, though he spent more then a year
feeling like shit. i expect 3 to 6 months of pain and problems in healing.
at least i believe in pain meds. it's good that i'm not an addictive
personality. the only drugs i really enjoy is good wine and good weed, neither
of which are good for pain. any other drug i've never had a problem
stopping. i know america you don't dare believe but that is your problem.
well, my next appointment is jan 20. so i can't worry until then.
(though in my old age i find it somewhat creepy knowing that someone needs to
cut into me. but what can one do. to live one must live.
Janurary
21, 2009
well, obama is president, fake us poets are singing his praise and a rational
man dares to hope. if nothing else finally an intelligent person
representing my sad country. on my health, one hates to agree to be cut open but
either i wait to blow out or get fixed. just follow the yellow brick road
and on to my appointment with a new vascular surgeon, one who cuts. at least it
seems that it will be soon. my really only worry is all the cuts to all
the hospitals i can choose from. i'm told nursing isn't cut but i doubt
it's true. but i've heard good things about the hospital & doctor i'm
choosing. don't worry i'll be back in a month or two, the universe isn't
done torturing me yet, i'm sure. hey, i predicted Carolyn Kennedy would be
our first woman president back in the early 80's, it could happen.
February
27, 2009
Well
I have to admit that I was pleasantly surprised by the care and competence I
found when going to the hospital for my pre surgery testing.
The anesthesiologist was particularly intelligent.
It does seem that this open surgery for my abdominal aortic aneurysm is
more complicated. Everyone seems to
feel that it is particularly more dangerous because of my health.
No one ever seemed to be that concerned previously.
So, it is probably smart to get this done before I’m older.
Like I have a choice with its size. Playing
with stents for years until they fail doesn’t seem like a viable choice.
It
seems that I will wake up with tubes for breathing, eating, peeing and for blood
accessibility. Even with drugs, this
doesn’t seem fun. And up to 7 days
in. if I had a choice.
I must be getting old as this seems real creepy.
Also they all make me feel more unhealthy they I feel.
Besides the vascular surgeon a cardiologist will also be present.
I don’t get those who like all the attention.
Concerns
of increased disability are mostly on my mind.
And truthfully a small part, never there before, wonders how well I can
handle all the torture. Like there
is any choice. Just too much time to
think.
At
least I now trust, besides my doctors, the full staff at this hospital.
Good Samaritan Hosp. In Suffern, NY.
With all the financial cuts being threatened here in NYS leaves me
surprised at my positive encounters.
Well,
I guess I’ll be back when I’m back.
March
23. 2009
Well,
i survived the open surgery. Spent a week in critical care. Doctors
and nurses were excellent, got lucky again. Was let out a day early
because when they stopped the epidural blocking pain at my spine, then it seemed
my spascity came roaring back and i couldn't bear being tied to a bed,
drugs gave no relief. Needed to be able to get up and down, continuously.
No doctor seemed to have a clue. I figured getting back to my old pattern
might help. Being my bladder and bowels started to work and i could
somewhat walk with a walker i could go home, rather then going insane for my
final day.
It's
been 2 weeks and i can't handle sleeping in a bed, so i spend my nights in my
chair. do seem to be getting a bit better each day. my main pain
comes from my brain problems. my full stomic cut does bother but it's
bearable. my taste budes dies for the first few days but seem to be slowly
coming back. see dr michael schwartz in 4 days, and i expect all his work
to be doing fine. now if my brain would settle. tired!
April
10, 2009
About one month and I'm starting to feel vaguely human. Can't imagine how
i choose to have such an invasive surgery. And then i remember that when
an aneurysm blows, surviving becomes a question. And now i have one less
health worry. Though, so far my legs are worse and the spascity is so bad
now that i'm in pain most of the time. Ah drugs, truthfully though most don't
believe, beyond the face that they work for the pain, they really do suck.
My taste buds are starting to comeback, at least to the point where i'm not
losing weight. Could really use a new scooter as i can only manage about
thirty feet out past my door. And it seems that Medicare will only ,
though no one will say it officially, pay for a scooter in you need it for use
in your home. Now a scooter is made for use outside unless you happen to
live in a house large enough to accommodate one .Usually one uses a power chair
for use inside. Now if you can afford such a large home, you can afford to
buy a scooter. But try to get anyone from Medicare on the phone who has
the ability to discuss this. we the people are not allowed their phone
numbers. thank you congress. Hey, a few hundred years ago i'd be
sent out onto the wilderness to feed nature.
anyway, i it seems nerves are starting to grow back, as the pain of healing,
bearable, is growing, yes a good thing. still sleeping in my chair, it's
comfortable. If you just hold on, often the worst passes (if you're not one of
the really unlucky ones) and you begin to find things that make life worth the
trouble, again. a voice, long unheard, a glass of wine tasting like wine,
a meal that doesn't make you gag. a poem growing deep within your soul.
May
6, 2009
If you are wondering how one gets through a medical problem that appears to be
overwhelming, well for me the answer is or was fairly simple. you grit your
teeth and put one foot in front of the other. Before my operation while
they were trying to stick a needle into my spine for my epidural, i really
wanted to tell then, by the third try that i quit. Holding the nurses
hands and seeing that her eyes understood the pain, i cried out slightly and
just held on. The pain stopped and well, there is an "Antje Duvekot"
Song called "Hold on" listen to her sweet folk blues and well what
else can one due. I never really understood when other people had a
problem, pain or situation to overcome and they were faced with the answer that
they would demand that there was more to it then just following the answer.
Say you're lonely then the answer is to engage other people until you find one
who sees you. Simple, even if you're scared, just ignore it and do something.
The first time i went out to Hitch-hike across the United States I found myself
standing on an entrance to the George Washington Bridge, just to realize that in
1972 that there were many people and police who who would see this long haired
hippie as dangerous as people see terrorists now days. This gave me pause.
Luckily I barely had a home to return to so had little real choice, or so felt
an young half boy. I learned by chance that the answer was really simple.
I could just stick out my thumb, take a breath and move on. The rest just
follows on it's own. And it's worked for me since. If it doesn't
kill you then you are still moving and what more can a man ask.
Except for my walking i'm healing maybe slower then some but healing all the
same. Food is worth eating once again, even have to pay attention to my
weight. I use my old scooter to travel to get my mail. I can have
people visit again. and i can spend a whole night in bed. with just
an occasional pain break back in my chair. Don't think we'll be able to do
a vacation this year, (need a new scooter, and a new chair so there goes the
money) but i am suddenly wanting to sit in the shade on a beach drinking wine
and dreaming on the ocean wind. I couldn't imagine such just a month ago.
Time does heal if you grit your teeth and allow it. See, it is simple.
September
9, 2009
Well, I finally tried to find another Neurologist, one who would be willing to
at least talk with me every once in a while. One who would keep track of
any new treatment options that might be discovered. And yes, I do realize
that any new treatment I might find would only be for the making it easier for
me to live with my symptoms. First he felt that one of my problems should
have killed me by now. Also that he couldn't help me as he wasn't fully able to
prove the reality of my symptoms, without a valid diagnosis. (I guess most
Neurologists feel that an MRI showing multiple Brain lesions, though imply I
must have problems and many which are measurable , are not competent enough to
see the connection with pain and spasticity among other symptoms. Even if
they studied at the best neurology clinic in the Northeast.) I guess if I ever
Really need a Neurologist I'd have to go to the Columbia Neurological Institute
at New York Presbyterian Hospital in NYC (maybe) or to the Cleveland Institute
in Ohio. But all this I expected, it was why I put this off for so long.
I am still paying for wanting to live and having the operation. I figure
that if I don't get back to where I was in another 6 months than I'll just live
with it as I'm doing now. If only I could share with all those idiots who
are jealous of my handicap parking, oh well.
Even though both my vascular surgeons don't feel that I have any systemic
vascular disease, Dr. Innerfield, realizing that I can find no one to at least
follow my brain, is trying to assist my vascular system as a whole. I am
now on a non-flush Niacin and Fish oil along with the other medications.
Life's a bitch and then we die. Nothing to do but live in-between. What
I'd give to only think I'm ill. Fixing the Health care system in our
United States won't help me, Idiots are Idiots. Neurologists, Bah Humbug!
November
10, 2009
I
find the concept of this narrative written in it’s blog form to be a bit
difficult to follow unless one treats this as a blog.
Agreed that was my intention, but it seems that someone new would have a
hard time following my progress. I
am hoping that this might help someone in a similar situation.
Though I now come to see that my case is very unique as the few similar
cases have others even more disabled then me, where as their hope is already
gone. But since I’ve gone this
far, I might as well continue. Good
mental therapy?
I seem to have remembered someone incorrectly.
Indecisive I am, which is abnormal for me.
Do I tell someone that they had less an affect on the world then they
might believe. Or do I let them have
their small delusion. If I only had
my full reasoning back. If I had
more energy I might be able to care. So
I must just let the world play its little girl games.
I seem to be losing ground that I seemed to have
gained over the summer. I am lucky
to last a couple of hours in any social situation.
It’s all too subtle, the movement of my symptoms.
It’s hard to keep track of. But
so I feel I must; in order to know where, when and how to fight against these
losses. Must not go easily into the
night, to paraphrase. I am reminded
that this is always a bad time of the year for me.
I know that there must be an autoimmune factor
to whatever causes my many brain lesions. Should
have gotten the flu, but once again haven’t.
Also, been having a hard time breathing without any pulmonary causes.
This leaves only my broken brain. But
using a Flovent inhaler with steroids eases this problem.
Using a Proventil inhaler does nothing.
My brain is sometimes like an LSD trip.
Should have had this problem as a Teenager.
I know, my humor, bad.
May
11, 2010
I seemed to have settled with my symptoms slightly worse since last years
operation. Spascity is more
pronounced and seems to extend to my emotional responses if left untreated for
long. There is now pain in both my
legs with each maintaining less strength then before.
And now my short term memory often fails.
November 5, 2010
Found a new Nurologist, a Dr. Ferra, and as they all do he wanted me to do a new Mri. It showed no change since last time. He also wanted me to see a Hematologist (Dr. March) Well he must have done the one test Dr. Innerfield missed. And to my surprise he found something. I'm positive for one copy of the 020210A (Prothrombin / FactorII) Gene Mutation. So, I inherited a 3-6 fold increased risk for Blood clotting problems. Having this doesn't mean that it will affect your health unless. And for some reason within me it's active. Also my Homosystine levels are still high even with taking supplements. Doesn't change anything, except some of my doctors might want me to go on Coumadin, a blood thinner. I haven't decided if the side effects are worth it. I had a TIA back in September and was conned into spending a night in the Hospital. I don't know if my sanity can deal with another stay in a hospital. But it wasn't a stroke. They did give me all my meds except for the perocet. It seems no one wants to deal with my Spascity and pain. And they expect me to lie quiet while my body goes insane. Like my mind isn't connected to my body. Yes, the goverment holds a threat over all my doctors. So far I seem to be lucky to have Doctor with Balls to live up to her oath. Oh, my wife did go home for my meds. And so, and so, and so on.
November 17, 2010
I decided to go back and look at the blood tests I had in 2006. Why did I misinterpret these tests. It turns out that they showed the G20210A gene mutation (higher risk for blood clotting problem. Also it showed me positive for the A1298C Gene mutation ( increased risk for vascular disease). My Factor 9 was High (increased risk for Venous Thrombosis). Now These offered reason why I reacted to the very rare event from the G20210A presence with multiple brain strokes , heart attacks etc. My tests also showed my CH50 is high ( Possible Autoimmune indication) Maybe I rarely get colds anymore, and never the Flu because of this.
Now my INR was Low (reflects thin blood?) and my Thrombin Time was High (reflecting slower or longer clotting time.) This seems to be why going on Comadin wasn't deemed necessary. As the Asprin along with Aggronex were doing the job, except for an occasional TIA.
Decisions, decisions decisions... Do I maintain with limited side effects or move onto a more dangerous but effective drug, which is what is recommended. Don't need brain bleeds along with clotting problems. 16 is more then enough lesions. Am I having fun yet.
April 19. 2011
Hell, I've decided to keep the Status quo. The additional risk of Coumadin (I know that a safer version is being tested, I'll wait) or even just adding Plavix becomes a Risk standoff. At least until I experience another TIA or worse. Now concerning my symptom management, I've gone from Perocet for Spascity and spasims to Neurontin. A First time sugesstion from Dr. Ferra. A Nurologist with an origional idea. Also, it doesn't stay in your system so it's goverment approved. Six months later slowly getting to a working dose (600mg 3 times a day). Does nothing for the pain but seems to make spascity bareable. Though I still need one perocet at night if I plan to get any sleep due to pain. No withdrawal symptoms from cutting perocet to one pill before sleep. On the other side Neurontin is like being on MaryJane all the time. Funny Perocet never got me high, just tired sometimes. Yes! Our Goverment and our Doctors do ignore the Patients reality for their oun money making delusions. For 6 months they tell me I'll get used to the side effects. Well at least I might survive another Hospital visit at least mentally! Without the Spascity making me insane. And as the river calls, I go so few places, worn out oh so quickly. And as the river calls!
August 4, 2011
Well another trip into the surrealism of a deep
Sartre play. After a week of on an
of these symptoms; tightness in the chest radiating up into the neck and extreme
dizziness as well of occasional sharp chest pains which rarely lasted more than
30 seconds, I finally succumbed to the illusion of being rational.
Of course it was a Friday. My
symptoms came again, grew more pronounced and lasted for 6 hours.
Against my better judgment, I called 911 for an ambulance. Only about 6
hours in the emergency room and they
insisted I go in the hospital for more testing.
It seems my bad luck was holding as my regular Cardiologist was on
vacation until Monday so I had a stand in. Not
sure how good he was but he was too happy and would discuss nothing with me
except for saying I should wait for Monday when Dr, Innerfield could do an angioplasty
procedure. As I hadn’t had a
Nuclear stress test for about 3 years, I figured that this made sense. You
see I had a very bad reaction to meds necessary for the test due to my
disability. It seems my heart
decided to slow way down instead of speeding up.
Could have been a reaction to Aggronex, maybe? Ok Friday night until was
bearable as I had no roommate. Even
so I only got 4 hrs of sleep. Now
for my brain this affects me by increasing certain symptoms.
But one night is bearable. Late afternoon Saturday of course, a roommate
arrived. He was a decent older man,
but liked to blast his TV and fall asleep with it on.
He had very loud and too many visitors.
Good for him, but too much anarchy for my brain.
So night two and three only 4 hours of sleep each.
I must break to say that being on Neutrontin kept my spascity bearable
and so kept my body from making me insane. Had
Chest x-ray, neck Carotid Sonogram as well as Doppler of heart.
(All were negative, unknown to me.)
Ok, So I remained in control into Monday, as late Sunday night I was told
that Monday’s procedure was cancelled and someone would let me know what was
going on Monday. Monday and the
nurse wouldn’t tell me anything. So,
I asked the hospital doctor, as my replacement doctor didn’t show, to let me
know what was going on. He left and
never returned. Then a social worker
showed up (they are called something else now, but after some prodding she
admitted she was one) and I asked her to find out what was going on.
She also left to never be heard from again.
Now I assumed that my tests were negative from hints and the fact that
they stopped the nitro patches when my headache got bad.
So by late afternoon, when my real doctor
appeared, my self control was starting to slip, Neurontin and Percocet (my own
addition) were losing the battle due to the extreme irrational behavior.
And so Dr. Innerfield arrives and the rational returns.
But by then I only wanted to go home.
A Shower and some sleep, PLEASE! Luckily
I’ve known him a long time. It
seemed reality was as I presumed it before the extreme irrational behavior of
everyone else. Innerfield planned to
do an angioplasty on Tuesday morning at another Hospital as Nyack Hospital is
not rated for it. “So, why the
****couldn’t anyone tell me this? Innerfield
due to the fact that all my tests
were negative let me go home but I had to be at his Hospital at 6AM.
No Problem, except my wife had to drive me.
Though she would have been there anyway.
Well all that ends well, ends well but!
The angioplasty showed no blockage and though he wasn’t specific, the
vessels were in reasonable shape. At
least innerfield was aware of my vascular reality and so would be able to judge
when it was time for another angioplasty before something real happened, I hope.
Again, thank you Dr. Innerfield.
The Moral of the story is don’t get desperate when you best doctor
isn’t around.
Now you ask? What was wrong.
Was it my Brain again. Can
Pulmonary Embolisms at like TIA’s. Thought
of this after being home. Don’t
know whih Doctor to ask so I’ll ask them all, that is if my brain lets me
remember. On this the internet was
no help.
Well I survived and though it would have
been nice to have a reason for these new strange symptoms, being found without
blockages is better. I’ll just add
these symptoms to a growing list of ones I just have to live with.
I think Samuel Beckett would be proud of my grudging admiration of this Play of the Absurd.
September 15 2011
Stroke Details; Which Began on July 29, 2011
For a week before July 29 I had TIGHTNESS IN CHEST RADIATING UP THE NECK AND THROAT WITH DIZZINESS. Then on Friday the 29th these symptoms became extreme, lasting continuously for more than 6 hours. I called Ambulance for emergency room. After three days in hospital finally finishing with a angioplasty done at Good Sam’s with Dr. Innerfield. He found that my veins to my heart weren’t blocked. Nyack Hospital tests; Sonogram’s to my Heart and carotid arteries were negative. Of course my Neurologist never thought to show, so no Brain scans were done.
Below are the list of symptoms that occurred or noticed upon returning home: (Note; I first thought these symptoms were from the stress of being in Nyack Hospital as I received only at most 4 hours of sleep for three nights. But that is another story SEE ABOVE.)
1- Short Term Memory Loss. This was extreme for three weeks but has leveled off. It now is an on/off again situation, being worse than before the Stroke.
2- Pain in both legs and arms deep in muscles.
3- Lack of will Power
4- Very short physical durability leading to extreme leg weakness
5- Mental Fatigue increased from before
6- Vibrating body in afternoon
7- Increased problem speaking with stress
8- Increased left side weakness, more in morning or with stress
Began taking a Half pill of Percocet in late afternoon for pain.
November 7, 2011
Had a comparison MRI done against one done in 2010. Symptoms are still lingering to this date. MRI shows no perceivable difference. Still could be an unseen stroke. Nuro and Dr Innerfield are beginning to agree with me that my gene factor is an improbable diagnosis for my type of brain lesions. Though Dr Innerfield feels that to be through i should have a Transesophageal echocardiogram to look for a hole in my heart throwing blood clots. This would agree with a G20210A gene mutation causing thrombosis, clots from leg going to heart and then going to brain. Improbable but possible. and as i am back to the beginning for a diagnosis. all this and more because i choose not to go on blood thinners without more proof. they just don't feel right and could cause me much harm. Dr Ferro is going over my history but has records only back to 1998. My old MS office personal weren't very helpful with my last request for old records. The staff now at White Plains Hospital never cared to function.
My new symptoms are measurable and were first brought to my attention by my wife. I'm sure nothing will be found and then it's back to guessing. but right now, it's: to take blood thinners or not. I'm so off and so worn, i could so easily say, "Fuck it!"
November 21, 2011
It seems that MRI is 83% sensitive for an acute stroke. That means it misses 17% of the time. Even my Neurologist had to admit this is true due to my measurable symptoms. Still waiting on a date for my Transesophageal echocardiogramy. Had to have a cardio echo first. One hour on my left side leaving both hips in deep pain. No one does not get used to pain. So, want to hibernate.
February 13, 2012
Finially had my Transesophageal echocardiogram. I'm not throwing blood clots from my heart. This rules out Thrombosis causing my strokes. Therefore we must rule out my G20210A gene mutation causing my strokes. Dr Ferro showed my an alternate view on my last MRI. This view shows up blank spaces filled with water. It seems that eventually after brain cells die the spaces are filled with water. So more holes to see in my brain. We both decided to get me back on Aggronex. It's possible that using just Dipyridamole and aspirin may not be as effective as Aggronex (a time release version of the same drugs). Back to being way overcharged by a drug maker. but it stops or even delays the next stroke. Hell, who needs to eat. Well just before the end of my last nuro visit the dr (as he now feels his job is to help me find a reason for my multiple strokes) mentioned that before next visit he will look into CADASIL. I mentioned this to my previous neuro. agreed he was incompetent, so Dr Ferro gives me hope, not for any real cure but for a real caring attempt to help diagnosis. Now you might sat why bother. If it's CADISIL, there is no treatment. It's extremely rare and is a genetic failure. But they now have more info on it and there are people trying to live with the symptoms as well as the reality of its progression.
Still feel like Shit. Am sleeping later on the nights i can fall asleep.. How do you describe a body that always seems to be vibrating. And feet that hurt when I lay them down. The change of weather is always my body's worst time. And here in the North East we've been flitting between Fall & Winter as now between Winter and Spring. And so, onward. It's still better then the alternative!
disabled
i
remember a world
i
remember the battles,
i
now stand aside
in
broken stride,
the
echoes remain
a
stain upon my dreams
for
i am no longer
more
then i am.
but
neither am i a mirror,
nor
do i cry
owe
me nothing
keep
your fear,
yet
while i'm alive,
i
will live
till
all honor is gone.
yes,
i ask no more,
and
only of myself,
for
once
i
had learned how to fly.
-love jude
an
angel sighs
i
dream of paris
of
cafe sitting
a
quiet dusk
fills
an empty glass of wine
ever
dry
“muddy
waters” plays
from
within open doors
i
feel a star’s tear
pass
lightly
across
my soul
and
an angel sighs
oh
my eyes
do
they cry
oh
my eyes
i
dream of sweet lips
and
longer sips
do
i hold them still
deep
and lost
yes,
i
dream of paris
where
just
maybe
i
could die.
oh
my eyes
- jude
a
quiet soul
on
a quiet soul
i
drift,
lost
in the veils of rhyme
between
long
times gone
and
dreams
who have
wandered
on.
i
yearn to rage
in
the light
of
a stage
carved
by winter minds.
so
tired and broken
this
crippled body
and
mind.
just
to write
one
more page
just
to thumb
one
more road
to
live or die,
on
a quiet soul
a
poet sighs.
- jude
just
to fall
in
a broken body
lives
a raging soul,
legs
won’t walk
those
mountain dreams
anymore
in
ice
cries
my simple
sighs
can’t
even try
no
more
can’t
even try
it
rains my evenings
away.
here
on a river’s edge
a
ledge,
almost
wishing to fall
and
only time left to hear
crossing
the line
crossing
the line,
i
scream the silence
and
yes
i mind
wishing,
wishing
to fall!
- jude
disabled
so
tired
the
man
is
caught
in
slow,
the
air
does
it know
what
dreams
still,
lie
where beneath
so
tired
his
body,
first
-
and
now
his
soul.
dying
too
slow.
- jude