My Un-Blog of A Life Disabled
1988 thru. 1992
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.
- (2 days playing ball in 90+ heat) Woke uup 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
to Neurologist DR. Carl Rosenkilde in Mt. Kisco, NY. Lee, & arm
came back to 98% normal after week.
- Testing continues with evoked response ttest of body. Showed Blockage.
Additional Mri's. Mri's showed additional spots. Diagnosed with Multiple
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,
- Went to MS Comprehensive Care Ctr. In Whhite Plains, NY and saw DR. Ute
Symptoms were Spasticity, Fatigue, hyper reflexes, extreme fatigue, swallowing
problems, jumpy legs.
- 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
- Quit work and applied for State And Fedeeral Disability on Advise of Dr.
Traugott and inability to keep up with work.
- 3 attacks foiled by 2 days after 2 day sstomach 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.
ATTACKS-. though very tired trouble falling asleep. When reading spasticity
4th attack not sure what set it off Increased spasticity, dizziness,
fatigue & affected bowel. Mobility decreased. Slowly symptoms reduced.
worsening of symptoms went to St. Agnes Hosp White Plains, NY for course of IV Steroids.
Steroids didn`t seem to help.
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.
Symptoms seem to very slowly be getting worse, Dr. Traugott won't
diagnose me as Secondary Progressive because of Insurance requirements
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.
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.
- Diagnosed with Avascular Necrosis. Faileed Stress test.
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
Partial Hip replacement done at Westchester Medical with Dr. Steven B. Zelicof in
White Plains, NY.
- Had Core Decompression for second hip inn Westchester Medical by Dr. Zelicof. Nurological
symptoms still seem to slowly be getting worse
electric Scooter as wife was no longer able to push me without injuring herself.
And couldn't walk with cane more then I block.
with a Abdominal Aortic Aneurism of 3 cm, on a follow-up CT scan for a kidney
has slight increase in size. Dr. Innerfield to check it every year instead of two.
- Seeming onset or extreme increase in perriods of extreme shortness of breath. Pulmatory
tests, echo and ER blood tests are neg.
to local Nurolgist Dr. London of West Nyack, NY for a new Brain Mri. He just
said there were no new lesions shown.
- 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.
- Took Dr. Smith that long to g>et 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.
- 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.
- Had MRI of Brain to see if there were anny increase in lesions over last year. Results
were No Change.
- Saw Rheumatologist a Dr. Meyer of New Ciity, 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.
- Had Thoracic and Spinal MRI's.
- Dr. Smith cancelled his appointment withh me. As I could only contact him by e-mail,
his staff never gave the doctors my messages. Frustrated I
demanded a diagnosis.
e-mail says I have Strokes not MS. Diagnosis didn't help explain my continuing worsening
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.
naming my disease Billy Bones Disease.
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
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.
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
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.
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.
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
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
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.
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.
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.
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 Iím older.
Like I have a choice with its size. Playing
with stents for years until they fail doesnít seem like a viable choice.
seems that I will wake up with tubes for breathing, eating, peeing and for blood
accessibility. Even with drugs, this
doesnít 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 donít get those who like all the attention.
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
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.
I guess Iíll be back when Iím back.
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
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!
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.
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.
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!
find the concept of this narrative written in itís 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 Iíve gone this
far, I might as well continue. Good
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.
Itís all too subtle, the movement of my symptoms.
Itís 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 havenít.
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.
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 hadnít 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 Mondayís procedure was cancelled and someone would let me know what was
going on Monday. Monday and the
nurse wouldnít tell me anything. So,
I asked the hospital doctor, as my replacement doctor didnít 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
Iíve 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. ďSo, why the
****couldnít 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 wasnít 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 donít get desperate when you best doctor
Now you ask? What was wrong.
Was it my Brain again. Can
Pulmonary Embolisms at like TIAís. Thought
of this after being home. Donít
know whih Doctor to ask so Iíll ask them all, that is if my brain lets me
remember. On this the internet was
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. Iíll 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 Samís with Dr. Innerfield. He found that my veins to my heart werenít blocked. Nyack Hospital tests; Sonogramís 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!
August 23, 2012
Went on first vacation in 7 years. Flew for the first time in maybe 15 years. Man, the world is not kind to the disabled. It seems that we only have mobility issues. The other disabling symptoms, are all in our minds. Fatigue, Spascity, pain. It seems too hard for many institutions to consider just making it maybe 10% easier then for the healthy. Might be that they don't believe that some of us aren't lying. My first use of a Handicapped room. Hyatt of Key West. I was given this room because they gave away the room we confirmed 6 months previously. Then the manager chose to call us liars. Having called the previous night and having arrived as we confirmed with proof, he chose to find us a room. I was lucky, all he had left was the handicapped room. A door on the aging dresser was broken, blocking my way. The bath seat had screws loose enough to cut me. and the bathtup backed up due to broken drain. Chairs had webbing broken and sticking out. All in all I know know why I never tried one before. And for $400 a night one would expect more then the most worn out furniture I've ever seen. The next day they fixed the first three problems. My wife was happy where we were and didn't want to fight, so I put up with this insult. I must say that outside of the room everyone treated us as well as I could dream. But I won't accept a handicapped room again even though it costs me effort. Now to the plane ride. Truthfully I had no idea. Web sites should have warnings for the handicapped, especially those who are 6'2". See my letter to United Airlines of which the only answer I've had so far was that it will be fowarded to the department that handles handicapped complaints. 3 weeks and no contact.
July 23, 2012
# NG2NGO Flightís 1115 Re: Confirmation & 1183
# NG2NGO Flightís 1115 Re: Confirmation & 1183
To whom I speak,
To whom I speak,
First I must explain; I am 60
years old and Disabled for 20 years with Multiple Vascular problems.
First I must explain; I am 60 years old and Disabled for 20 years with Multiple Vascular problems. My Disabilityis: 17 Strokes, 2 Heart Attacks, 1 Abdominal Aortic Aneurysm, 1 old Hip Replacement with the other hip needing to be replaced.
Saving for 7 years, my wife and my daughter who came to push my
Wheelchair during stopovers and myself needed tickets to Key West, FL.
On Travelocity we looked for the easiest way to fly straight through.
We chose United because you were the shortest flight with only one change
ďNOWHERE ON YOUR WEBSITE OR TRAVELOCITYíS DID IT SATAE THAT ANYONE
6í2Ē WITH LEG SPASMS, SPASCITY AND POTENTIAL HIP PAIN SHOULD NOT FLY ON
THESE NEW 737? DUE TO EXTREMELY SMALL SEAT SPACE AND HOSTAL FLIGHT ATTENDANTSĒ
We on purpose chose seating with an isle seat on the left side facing
front, thus allowing me to stretch my right leg as needed.
Even with the small seat area I managed with only intermittent pain going
on Flight 1115. But for flight 1183 our flight was changed by you, voiding our
original seats. I managed to get a
isle seat on the fully booked flight. Unfortunately it was on the right side.
I spent the entire flight home in extreme pain, with the only relief
being when I managed to stand. The
flight Attendants were extremely Hostile to me because of this.
And because of the fact of my being slightly in the isle due to the fact
that with both legs under the seat part of my arm would be in the isle.
By the way Iím not fat. Iím
196 LBS. Of course the plane arrived
late and was delayed for more than Ĺ hour on the ground.
I had to stand. One of your
Flight Attendants came up to me and harshly said that my standing was the reason
we werenít moving. And I wasnít
the only person who stood.
I have two requests that I will first relay to your complaint.
Kindly include in a visible way include the information on your and any
affiliated web sites on the size of this new seating area.
Please do this not just for Fat People But also for Tall (6í2Ē)
Cripples! Money was a secondary
consideration on choosing my flight. Not
having flown for over 15 years I had no clue.
Also you should disable the seat reclining choice.
The man in front of my wife really hurt her knees by slamming his seat
back and kept saying he couldnít hear me.
And she is only 5í7Ē.
I expect a real reply to my requests, before I consider going further.
The Disabled arenít only mobility impaired.
Just a little more consideration then the Law demands is all I request.
A Unsatisfied Customer,
now back to my health. I've had a Stiff neck for 2 months. An X-ray
seemed to suggest excessive Arthritis. Out of nowhere? My GP found
something strange and decided to have me go for a MRI. It was a quick
phone call of which I didn't get an opportunity to question her why? I
figure this strange result, out of nowhere, needs more information anyway, so I
havn't called her back. I go for the MRI in 2 days. Hopefully it's
not too bad or progressive. I'm really tired of being broken. of
pain. it will probably be close to a week with the weekend. Well I
just wait. Always, to be continued, at least until my body overcomes my
will to live.
Sept. 17, 2012
Results of a Cervical MRI done 9-2-12:
EXAM: MRI OF CERVICAL SPINE WITHOUT CONTRAST
HISTORY: Neck pain and
stiffness, degenerative disease.
REPORT: Technique: Sagittal T1, T2 and STIR
and axial T2 weighted sequences were obtained. Sagittal oblique T2 weighted sequence was also obtained. Images
were obtained on a Siemens Espree high-field
strength wide bore MRI at 1.5 testa.
Findings: The C2-3, C3-4, and C4-5 discs are unremarkable.
At C5-6 there is severe degenerative disc
narrowing, type II discogenic sclerosis adjacent to the endplates, and a broad-based posterior osteophyte with uncovertebral
osteophyte formation. There is foraminal stenosis
At C6-7 there is severe degenerative disc
narrowing, mild type II discogenic sclerosis, and annular bulge and uncovertebral osteophyte formation. There is mild foraminal
The C7-T1 disc and upper thoracic discs visualized are
unremarkable. There is no herniated disc or other epidural mass. There are no intradural masses. The spinal cord
demonstrates normal signal intensity. The craniocervical
junction is normal.
IMPRESSION: Severe degenerative disc changes at the C5-6
and C6-7 levels. There is foraminal stenosis bilaterally due to uncovertebral
osteophyte formation, more pronounced at C5-6 than at C6-7. No focal
disc herniation or significant canal stenosis.
And so, what does this mean to me. Three cervical vertebrae are degenerating. Real bad Arthritis. Why? Why everything else? My body seems determined to keep maiming me until... well, I'm sure you can guess. But I'm not through fighting. It's suggested that I go to an Orthopedist who will send me to Physical Therapy who will teach me to strengthen my neck muscles to stave off the enviable reality of my newest Physical Failure. Reality seems real determined to kill me! Hey, if you never stop moving, they can never catch you in their mirror. Not sure if I want to waste the time and money. Not like anything will change the falling time frame. At the rate I'm going, I won't mind when it's time to die. But no hurry, yet!
April 26, 2013
No new Strokes now that I'm back on Aggronex (for as long I can afford it. It seems to cost more every 6 months. Ah! Capitalism. Great if you're not middle class. And non-UNION!) Caught Phenomena while visiting my wife as she spent 9 days in Hospital for undiagnosed, "Oh my god I can't breathe!" Steroids and Major antibiotics and She's still alive and back to work but still having breathing problems. While in the Hospital her work switched her insurance to Hip Hmo plus. She pays extra for the plus giving her access to the real drugs. But she's been fighting to get acceptable follow-up care. No Doctors on the web site are real. If only we had the money to sue for misrepresentation. She battles on. THANK WHOEVER FOR MEDICARE OR I'D BE DEAD OR A VEGETABLE! Back to my health. i havn't had anything worse then a mild cold with few exceptions since my strokes became visible. I guess my brain wasn't ready for my getting sick? Since I got better I find that I can't walk very far now without my legs becoming very (More SO) painful to a degree that I can no longer get my mail. I must use my electric cart. I'm hopping the legs mellow out. The brain is weird so it can happen. Some problems come and go while other stay.
June 20, 2013
June 20, 2013
Highly probable I had a another TIA 2 weeks ago. Extreme vertigo and very increased sore arm lasting 24 hours? It had the feel of a broken brain. Walking still really sucks, maybe more so. No one to tell or care except my wife who is fighting for her own health at the moment. If her health care wasn't just reduced without telling her, she would be doing better. At least she can still mostly function.
Sudden extreme additional weakness in my left are. And an increase in pain when using legs from April. The arm almost back to previous weakness, but not quite, after month. Legs pain remains more so. Seems I might be getting back to pre Aggronex Health. Mini strokes Tia's or what.
October 21, 2013
Just reading Stroke Connection Magazine. It Seems that Doctors are finally Studying Long tern effects of stroke. A study of 15, 754 mild to moderate stroke survivors. 1,665 of these reported CHRONIC Pain beginning after stroke. Duh!!!
December 19, 2013
The changes in atmospheric pressure during this season seems to be playing hell with my pain. Debunking what most think, it is not the holiday stress that messes with the vascular system. It is the extreme changes in this pressure. Anyway, my yearly out of pocket health costs are about $3,831.52. The end of year Donut hole is killing my cash flow for the past 3 months. Most of this cost is due to Aggronex and Crestor. Lipitor is now cheaper but I'm only allowed Crestor under Medicare. Now Aggronex keeps going up by at least 50% per year. I tried to take the two old drugs that compose Aggronex for one twentieth the cost but i had a new stroke. it seems making these drugs time release work. Should have sued when it conflicted with my taking adenosine and almost killed me. I always feel better when I wake up alive and not in a hospital on Janurary 2.
April 8 2014
April 8 2014
It seems that the NY State's push to make it difficult for the handicapped to
obtain pain relief has finally caught up with me.
My GP Sandra Costley is pushing me to go to a Pain relief specialist.
Well one finally set up practice in Rockland
county. Dr Gottlieb. He's a 45
minute drive from home. on our first
visit, he disregarded my packet of test results and my latest MRI by saying that
he is not a doctor but a Anesthesiologist. This
is not what his web site says. And
he doesn't understand or can help my medical problem.
he can just give pain relief. But
first he needed 2 weeks to check me out. I
thought maybe he's an idiot but I only need him for pain relief.
Two weeks later seeing that I'm truthful I meet with him again.
So the deal. I must sign a
contract not to go to anyone else or sell these drugs.
ok. He prescribed a time
release oxycodine. 10 mg 2 times a
day. It matched the amount i take so
i agreed, hoping that this new time release works better, so i'm in less pain.
I ask on the price of this drug and he gives me a card where as i'd be
charged $15 a month. I have to see
him at $40 a visit every month. I
agree. Well, it seems that this card
is no good if you are on Medicare. And
my co-pay would be $261 a month until my donut hole which is quickly approaching. And
then I figure it will be atleast twice that. I gave the drug back to the drug store and called Dr.? Gottlied.
He twice wouldn't talk to me but was told he'd call on Monday. This
was a Friday. Monday his receptionist called, again he wouldn't talk to me.
So I told her that he just broke our contract and i reject him.
Besides an Anesthesiologist is a MD.
He just wanted to treat me like a criminal controlled under his
supervision. I refuse to be under a
fool's control. regardless of my
Luckily My GP agreed to treat me until,
under my demand She can find a Doctor doing Long term Chronic Pain Management. I
couldn't find any others. They must be within 15 minute cab ride at the most distant.
My wife has her own health problems and can't waste her days off on me.
So this is where I am. I've
cut down 3.5 mg's of my Percocet. More
pain but it appears my government wants to stop paying my Disability and my
Medicare. Even though this is
insurance I paid for. Proud to be an
american, let's put it on my grave.
June 22, 2014
Well after spending 6 months trying to get a Scooter from Medicare and Blue Cross I've finally gave up. Hated to, both on principle and due to the cost. They said I could still fight under the rules but I just ran out of energy or health. And so I Spent $182on the new model of my old Scooter as it help up for twelve years. It might keep going for a few more years with repairs I can't do. Thatis if I could find anyone to do the. And so starts my new adventure. You have no idea how hard this is and will be. See the following.
Received my Easy
Travel Scooter on 6/26/14 from Discover your mobility, Inc.
fully charged and Faceplate on controls were slightly scratched.
no thin protective film was on it. Scooter
seemed to function ok so i disregarded these two minor signs.
Then on Saturday 6/21/14 I planned to have my wife drive both me and the
Scooter to Bear Mountain Park for lunch and for the final test of the scooter.
Well it we couldn't even get the cart in the back of our car.
The scooter would not close in the folded position.
There is a gap between pieced so the distance is too wide for the pin to
Note: my 12 year old scooter from the same
manufacturer has no gap on its corresponding parts.
I must presume that i was shipped either a used scooter (of which they
sell that was not fixed properly or this was shipped out from manufacturer in
this defective condition. I
wrote the distributer on Saturday and will call on Monday.
This scooter is very heave so getting it back in the box will be painfull
and difficult. I expect a new
scooter to be shipped immediately and will tell credit card bank to put payment
Also I have not yet received my lighter
battery (paid extra) or my cane holder. It's
so much fun being disabled. Hope they will act with Honor. To be
Forced to go to a new Pain Specialist.
Thank-you, you greedy Politicians.
Forcing me to
give control over my body to one who has no clue concerning my Health problems
or needs. I'll not name this doctor,
as I need him at the moment. I saw
him on 8-29-14 as on a previous visit he said he would take me as his Pain
Management Patient. We sat down and discussed my needs.
After trying to get me to switch to Morphine or methadone.
Being I don't want to be Stoned, I rejected the Methodone and the
Morphine , I don't handle it well. So
he agreed that I would stay on my present course as it seems to work.
Saturday, my daughter filled my
prescription. I winds up being a
different drug. Luckily I had enough
old pills left to tide me over till Tuesday.
of course this thing always happens on holiday weekend.
When I finally got his Secretary to return my call, well.
The Doctor went online and found that I'd been using Hydrocodon.
I told her that I've been on ONLY Oxycodon for 14 years.
To keep this short, I was forced to try this different drug.
It didn't even temper the pain just covered it in a fuzzy feeling.
I began to hallucinate colors, etc. My
chest felt tight. My body was
quietly restless and I couldn't sleep.
Luckily my wife got through to his sectary
first. Oh, I chose to stop this drug
regardless on whether i got a correct prescription or not. Because the Doctor
wouldn't talk to either of us in person his sectary had to go back and forth
with him and my wife. Anyway when my
wife said I was going to go cold turkey rather then continue this drug.
He finally agreed to what was agreed.
My wife gave him the left over hydrocodon (all but two pills) for the
Prescription he originally agreed to. I
gave my wife copies of my monthly Medicare Drug Costing report.
I'm sure he'll never give me the website that was the so called basis for
him to change my meds. For me to get
shut down. If it exists.
And I have to give him $40 a month!
The Government doesn't get or really care
about my health. As I have too many
Doctors for anyone to control. And a
GP who's limited. I am my own
Doctor. I should be dead!
But 22 years and so far still going.
Oh by the way, I just found out I have a
slightly low platelet count. Back to
Hematologist. Odds against Cancer,
probably relates to my clotting problems. But
great time to being messed about by another non-qualified
to treat me doctor. Yes, any
nearby neurologist won't treat me for pain.
To be continued...
two letters mailed 9-11-14 from a Michael D. Robinson, the above mentioned
Doctor. You see on Tuesday Sept. 9
he called me to tell me that he is dropping me as a patient.
When I asked why, he told me that besides Percocet my drug test showed
large amounts of cocaine. Being I
have never used cocaine ever in my life. When I told him and that I'm very
concerned. With all my vascular problems I would be dead if I used it.
I mentioned that if true then there must be something else wrong with me.
All he said was I had Large amounts of cocaine on my test and so he's
dropping me as a patient. he then hung up. My
wife called him requesting a copy of the test and she was told to call records.
When she called records, it seems that they sent the only copy to my
regular doctor. When i called my
regular doctor the office stall received a fax of this so called test by fax.
Yes, another lie! I am now
waiting for a copy of that fax and a prescription for a drug test.
Depending on the results, I told my doctor to be ready to follow this
test up to discover what is really wrong.
What I find strange is that in both of these
letters from Michael D. Robinson have no mention of my drug test results in
connection with him dumping me as a patient.
They read very concerned and polite.
As if someone is afraid of being sued.
My present concerns are about my health.
As Dr. Robinson knows from my detailed 22 year History along with two
Mri's, my primary concern is my health. I
really am an extremely unhealthy person who's lucky to still be alive.
Managing stress is a large piece of puzzle which has kept me so.
Since seeing Dr. Robinson I*'ve dealt with more stress then i've had to
in years. My wife told me that she
call Dr. Robinson and told him to call her as the stress of me dealing with a
lying doctor is harming me. But
still he call me to make me crazy. Not
my wife so she could deal with his strange behavior.
Without pain medication as part of my Many drugs, I would Stroke out from
continual muscle spasms.
I really don't understand why I'm being put
through all this trauma. I've dealt
with him in good faith. I have never
lied to any of my doctors. They are
there to keep me alive. And
WHY would I take huge amounts of cocaine right before a drug test for medication
I need to maintain my health questionable status.
Why would I take a drug that would almost kill anyone with all my
If I somehow I hurt his feelings, He's a
Medical Doctor who took an Oath to do no harm and he's a grown-up.
Deal with it, I'm really very sick!
Well found a Neurologist who also
specializes in Pain Management. He's
an hour away and I can only see him just before my Pain Meds run out.
Let's hope he's a real doctor. One
who believes in his oath and cares about a very ill patient. To be continued if
October 6, 2014
Well it seems
that my GP, Dr Sandra Costley after 14 years who was the one to start my
treatment for Spascity with oxycodon, seems not to want me as a patient.
This was after trying every other alternative.
She is Canadian so i don't think she was aware of American politics.
After my asking her why she never spoke to Dr Robinson about my Drug test
being inaccurate. She has a poor
memory, to change the subject she would tell me that there should be a better
treatment. Even though neither Pain
management doctor found a better treatment.
She did give me just enough medicine to hold me until my appointment with
a Neurologist-Pain management Specialist. He
is an Hour drive north. It is time
to find a new GP. I would have done
this years ago, but i went through 3 incompetent doctors.
One could have prevented my first heart attack, but my misdiagnosis of
Multiple Sclerosis (of which he did not think it was a real disease) caused him
to ignore my symptoms.
Now that BC/BS is no longer offering a PPO plan in my county, I'm sure my
pool of is less. "Stuck in
Mobile with the Memphis blues again" None
of the other offered plans include my most necessary doctor.
I must thank Obamacare. This
new plan offers less and again
charges me more.
I'm sure Dr Costley will deny not wanting me as a patient.
But calling me a junkie and no longer believing in me,
what else can i presume. All
I want is to be treated as a patient! A
little respect and responsibility from my doctors.
If you recommend a Doctor, be responsible somewhat for their Abusive
actions. No need to become abusive
November 4, 2014
New pain Doctor is smart and compassionate. He is the second Doctor who seems to have a clue to my Genetic predisposition towards vascular failure. No cure just some luck and symptom management to keep me alive. He did spend half our time explaining that the DEA presently, prefers to spend their time and our money harassing caring doctors rather then going after the real drug dealers. Yes, the Street dealers proscribe 99.9% of the drug users. Most doctors only prescribe to addicts be the rare misjudgment. But with salaries of over $200,000 they've gotten lazy and mean. I remember; there was a street corner where my brother and one sister hung out as teenagers back in the late 60's. Some of there crowd were junkies, not all! Well the FBI agents would come giving free drugs to junkies when no one was around. They were trying to get them to OD, to solve the drug problem. Years later our Country decided to pay off the drug growers in Afghanistan and Thailand. This got the Heroin off the streets. Unfortunately a few years later and Columbia and others began flooding streets with cheap cocaine. And so the circle goes.
Anyway my drug test was clean. Doctor says that Saliva test are very unreliable. It did show levels of Alcohol. Called my wife to make sure I'm not Alcoholic. Normally i drink two glasses of wine at night. And maybe a bit more when going out to dinner, which I did the night before. I only drink wine, which I know in moderation is good for Vascular health. And truthfully I drink because I like wine and it is my only vice left. Just began getting dizzy all the time so an cutting my usage to one small glass with dinner or less. Multiple strokes is not a stable disease as most people think. Symptoms come and go on top of the many continuous ones. Well at least now I will be treated as a patent and not a junkie. I don't really use that much. At least this doctor isn't trying to get me on methadone.
Once a month and a pee test along with an hour drive. It's a bitch for one with urinary problems, but that's the game. Caring doctor and stall. Crystal Run is doing medical care right. Patients first, well just behind the government. Hope they can maintain it.
And just to note; I've only
gotten during once in the past 40 years. I drink for the enjoyment of
wine. I drink the best I can afford. Will probably will have to stop
when my wife retires. But so goes the retirement of two who put a silent street
battle for civil rights above greed, or the need to be overly secure often at
the detriment to other's basic needs.
And just to note; I've only gotten during once in the past 40 years. I drink for the enjoyment of wine. I drink the best I can afford. Will probably will have to stop when my wife retires. But so goes the retirement of two who put a silent street battle for civil rights above greed, or the need to be overly secure often at the detriment to other's basic needs.
I have to sat; even with the DEA threatening my
Pain Doctor with prison for any mistake, this Doctor doesn't just prescribe.
He's a Doctor first. He
realized that Perocet was causing my minor liver disease.
So, he switched me to ocycodone plain. He tried me on a bit less as some
claim that it is stronger. After
trying even less then he suggested I found that for my spascity I needed the
same amount as I was taking with Percocet.
Luckily I had a few extra of Percocet to cover the need.
At the last visit he told me that if I ran out they would write a one
week emergency prescription. But
that this was not to be used more then once.
He also again reminded that if using alcohol one has to be careful.
Alcohol depresses the breathing along with ocycodone.
Both together can be dangerous if over used.
As I drink wine every evening, this is a necessary reminder.
This wine is good for the health of my broken vascular system.
I can only say that finally I have found a
real and caring doctor to handle my pain and spascity problems.
He looks to my complete health. And
not just there to write scripts for my pain.
It is a symptom of my disease. It
is a symptom that unchecked will cause a cascade of other symptoms.
This in turn will increase my disability.
My ultimate goal is to remain stable.
I'm hoping that future blood tests will show
my liver is doing better. So, one
problem less for me to worry about. This
Doctor will help me to watch that my Pain & Spascity management doesn't do
more harm then good. This I have
been forced to do on my own. It's
good to have help.
May 19, 2015
Liver tests normal. Walking is going to hell. I just overcome and don't take more pain meds. I know yet. Best to put off as long as possible. But don't want to limit my living. My scooter has seen better days, but so far so good. We're both determined. As is common getting up in the morning is hard. If it wasn't for the spascity, even with the meds, no I would get up anyway. If you stop moving, then you lose the ability. Common knowledge. My mental creativity still exists and I'm still able to manifest. But try as I might the limits still hold. No Novel to rise from all the lost pages within. I walk the line, upon the edge of loosing it all. So, I rise each day, hoping not to collapse. I push only to before the line. Had two Poems made into classical poems; for Cello & voice. Played at Manhattan School of Music. I so wanted to go. But The week before I started to feel, well it's like knowing that your body is having say a heart attack, but knowing you aren't. But not 100% sure that you might collapse if you push. And so I couldn't go. My Brother did go. He said was so much better then he imagined. Composer later sent me a recording. It totally worked. Maybe next time.
Not long age I came in touch with an old boyhood
friend. A year ago he received SSDI,
he was 61. Managing to get SSDI at
such a late age surprised me. Not
because he didn't deserve it but because no one gets what our government
promises so easily. He is still
waiting for Medicare. I mention him
because of this. We talk through
Facebook email. When he asked for us
to start talking on the phone. I had
to decline as talking on the phone wears me out very quickly and can take days
to recuperate. So is being disabled.
What surprised me was his reaction. "Oh,
I didn't know you were that disabled. I
thought disabled means that real life functioning is very difficult even with
aids. Someone close who i thought
knew better seems to feel that I'm lucky to be disabled.
I don't have to work or deal with the real world.
Like I'm not at eternal war with Medicare and the Pharmaceutical
establishment. Like I'm not trying
to work a corrupt system to remain alive.
I rent in a Three bldg complex and live on
the 6th floor. I pay an obsean
amount for one of the few elevator bldgs in my county.
Now we have a doorman, so packages are never delivered to my Apt by UPS,
FEDEX or USPS. as we have a doorman. But
if I have a Package too large to fit on my scooter, for the last 18 years I
called the doorman and he found someone to bring it up or down.
Well today I was told that he they aren't required to do this.
But he would ask the barely functional Super if he could ask one of the
bldg workers. I did somewhat
overreact as I had a time limit in which to return a broken tv before they
charged me. The super did allow
Eddie who I've known since I've been here and who usually will help after work.
But now the super wants the power to control this service.
This is what I pay too much for. But
no I don't have to deal with the world.
And after speaking to Fedex they say I can request Apt delivery but if or when is the driver's choice. And guess what that choice will be. No respect as it seems no one really believes I'm disabled, as it seems too many very functional claim to be disabled to get the "Perks".
February 27, 2016
Now, in the USA the "Drug Enforcement Agency" is the most corrupt government agency outside of Congress. Why do I feel it necessary to reflect upon what any aware citizen already knows. Just my way of giving them the finger for the effect their corruption has upon our so called medical professionals. After years of bending to Fear, they seem to be believing the DEA's self serving lies. I have a neighbor with a son who lives with a traumatic Brain injury. After years on pain drugs, which never cover the pain he finally in frustration over the difficulty handling his pain and remaining functional he. moved to Colorado. Yes tired of being treated as an addict and not a patient. The evil weed. Desperate to have a real life back he began a search for a doctor who wasn't owned by the FEAR! He is now able to drive. Though still medicating with opiates he has cut down to one quarter of his previous use. He has found a strain of Marijuana that really controls his pain. And guess what? It is a strain without side effects. It doesn't get him high. He now can again drive a car. But what of all the so called abuse that is going on. Well 99.9999999999% of all drug abuse is not done by patients. Those disabled by pain don't want to get high. Hey, if a Pain doctor makes an honest mistake treat him like all other doctors. With respect for honestly trying to help the broken. These stories are in the thousands. In France they are willing to kill patients just to find a more so called acceptable form of pain relief.
So to the DEA I say F**K YOU! Give up your excessive salaries and find honest jobs. You have had no effect on the real drug problem around the world as within our country. Let Doctors believe in their oath once again. Let the treat their patients as PATIENTS once more. We don't want to get high. We just want to have some illusion of a real life. My own story has been on my web site for many years. One could not perceive my frustration held tightly at fighting against their forceful delusions, intrusions into my 23 year very provable illness & disability.
March 06, 2016
Just went to my pain management Doctor Friday. Keeping me on my toes I was once again treated as a patient. There was also no mention of the DEA. He still wants me to refrain from my nightly two glasses of wine for 3 days before my appointments. But this time he gave reasons I can respect. He needs me to show that I'm not an alcoholic who might OD in combining that with my Pain drugs. He even vaguely showed that he was looking into valid alternatives. Of which there are none.
Truthfully I hate these drugs as do many others. And even though my pain level is higher, it is still bearable. And so I refuse to increase my usage. I do this in order to maintain any sort of real life. And not drinking wine for 3 days a month is nor such a big deal. Just remembering to is. And my doctor says he won't dump me for a mistake. A necessary respect for my disease. But with my wife I should remember.
So all in all I am once again at ease.
July 18, 2016
IT was 2 or 3 weeks ago. I woke with a bad reaction to atorvastatin 40 mg.
Memory is a bit fuzzy. But I started having pain in both upper arms, chest and back. Now I am on oxycondone which had no effect on this pain. Eventually I had to go to emergency room. Of course after 16 hours three heart tests and an MRI and nothing was found. Next day went to regular doctor and he sent me same day to my cardiologist. After seeing est results and checking me he thought to try stopping Avtorastatin.
Noticed when leaving with my wife with her help that I had a mini Stroke. Memory problems, slurred speech, greater weakness in my left leg. and a noticeable drooping of the right side of my face.
I'm trying to use 10mg of simvasstatin. After two days had bad night so today I switched to morning as pain seems to get worse when I lay down. This seems not to bother me so much. Hopefully I won't get worse again. the pain can be excruciating. As I'm no worse about pain which is how I keep my Oxycondone use low.
July 22, 2016
Well, it seems I still have a painful reaction. Simvastatin is a little better but it still bad enough to stop. Dr Innerfield is now going to try to get me approved to a fairly new injectable medication. This is not a statin. Repatha. If it's ok with Blue Cross Mediblue then a nurse from company will come and teach me hoe to use their Autoinjector. I should have no problem as they are single use. It's the cost I'm worried about. But at least in less then a year my generic Aggronox should be more affordable.
And another stroke. Been having hell of a time with pain from statin. 6 weeks and getting a bit better. Hopeful. Saturday morning. Follow routine. While sitting before computer suddenly; It was like a small nova imploding into my brain. A Black hole sucking my consciousness. I could feel the beginning of the loss of self. Luckily, it all receded but not without a lasting side effects. Getting better I think. Luckily I still can.
August 28, 2016
Finally have new Neurologist. She received her first degree in Shanghai, China. Her degrees in the US are from University of Michigan to NYU. She appears very intelligent and her insight hasn't been corrupted by our messed up healthcare system, yet. After taking time to read through my almost novel of a medical history she seems to have returned to the conclusion of Dr Olarte from the Columbia neurological institute In 2006. In NYC. But rather than either or, She thinks from MRI's & history it really looks like I might have both; Multiple strokes and Multiple Sclerosis. She Makes a good case. But as there are no tests to prove it, it's all a guess. She made the best case for the details. Won't change anything for now. But my recent mini strokes make more sense for a relapsing remitting MS occurrence. Hey, it breaks up the focus which is always a good thing.
October 25, 2016
Well, the broken system seems to be overworking my pain doctor. If it keeps up I feel I might become lost within his overworked time. He could lose his purpose by the over extending of his care. Hope he finds balance. For my health and for his. I know doctors don't want to be people to their patients, too hard to carry. But they are all (the good ones) people to me. It's who I am.
Second, I started taking Repatha for my genetically high Cholesterol. $500 a month which is a stretch, but what choice do I have. Can always cut down on food, clothes etc. As long as I have my rent. And I can afford my other medical expenses. Time will tell. Just to the reason I mention Repathy. Well it works. Good and bad. And so far just a bare touch of side effects.
May 8, 2017
March 7, 2017 I underwent a right full hip replacement with a Dr . Fond at Nyack Hospital Joint replacement wing. He and the Head Anesthesiologist took in account my MS and Strokes. Hospital stay was 2 1/2 days. In all my many times dealing with Hospitals including Nyack, this was the first time I didn't hate it. My bones were so worn they were describes as craters. The pain finally became unbearable. So I had no choice. My muscle healing is a bit slower than per sea normal. But after 5 weeks I could walk with my cane though carefully. Now after 2 months I am functional as I can be considering my other limits. Still some muscle healing continues. And an occasional bit of nerve pain. Hopefully this will be my last operation. Some day my luck might run out. This time I so appreciate the doctors and nurses who didn't just ignore my neurological health conditions. It does make a difference.
October 23, 2017
Well it's been a busy 5 months. My hip replacement is doing well. In July I had a few weeks where My memory began failing me. Leaving my Scooter with the power on and leaving mail under seat. Forgetting even with a neighbor reminding me. Also I was growing more fatigued and dizzy. The memory seemed to finally get better after a few weeks. But the fatigue & dizziness remained. Because of the memory problem I figured that this was the MS though Im found my face with a pronounced left side droop that continues on and off to the present. This seems to be tied to my stroke. This guessing so sucks and it seems can kill me. Approx August 22 I took an Ambulance to the emergency Room at Nyack Hospital. I suddenly woke up with the same pain in my upper back shoulders and halfway down my arms that I had with my first Heart Attack. Well after all the tests negative and with the pain subsiding I was finially sent home with orders to see my Cardiologist. He was not available due to his wife's health so I got quickest appointment with his associate. This took 3 days. After talking with my Doctor He said I can have or should an Angiogram but It would have to wait until the following Tuesday. Had a bad and slightly worrisome weekend. So I went in for an Angiogram which showed my Artery was completely blocked. Dr Innerfield began an Angioplasty. But My artery wasn't clearing. The other Doctors said I should go upstairs for a Bypass. Dr Innerfield was stubborn lucky for me. It took 3 1/2 hours but somehow he cleared my artery and inserted another stent to watch the blood flow once more to my still beating heart. Yes, no Heart Attack. And there is no why as I should have had one. All in Silence. Was sent upstairs into In-patient floor to remain overnight to heal. Cool, I'm still alive. Uncool I get a Bill for 20% of my part of billed $150,000. 20% of what Medicare approves. Why? They Billed as an In-Patient procedure. Blue cross's review says that it is IN-Patient because I spent the night in a Temp room off the Cath Lab. I have a bill from floor Doctor who was no help but was on the In-Patient's floor with me. And so I appeal as I see that once the Angiogram was done I was then ian In-Patient who had to spend a night in the Hospital. Oh it was in same bldg. This is a loophole in the Medicare law. One I will never accept. Am I having fun yet?
May 17, 2018
Been a while. I have appealed to Medicare about my being considered an outpatient. So far all of my appeals have been done by a Sub-contractor to Medicare who is paid by them (with our money) to find in Medicare's favor. On the last appeal level I was told that it would be by a Arbitrator in person. I sent in my paperwork and told them I was disabled and could not travel far. And then on the day of the appeal process I received a call that they lost my mailings and that if I wanted to continue the appeal process that I would either have to travel to Cleveland, OH or Washington D.C. or deal with the appeal over the phone. I have memory and quick reaction problems. Well as you can guess, it was a set up. To keep it short The Arbitrator who was under contract with Blue Cross found for Blue Cross. Wouldn't ever listen to my side.
Finally received another letter saying they are backed up for over 6 months so my final stage appeal would have to wait. I'm waiting to be Fu*ked over, by the inv9isible people who make Medicare rules.
Next. Approx in middle of March 2018 I suddenly had a Bad Allergic reaction to Repatha, the new Cholesterol medicine. I accidentally took a required two week shot on the following week. A week after that shot I started to develop a bad very itchy rash on both my upper thighs which was the sight of my last two shots. Now I know they also have a once a month shot so this was weird. After moving also to my lower legs the rash then moved to my back and arms, hands included.
I was given a steroid cream by a Dermatologist. My GP wound up being on vacation. The cream made my rash worse. Due to bad reactions is the past I chose not to use steroids. I just used a Hydrocortisone cream my wife had. That and Benadryl helped somewhat. After 2 months I am no longer itching. Most of my rashes are gone. But there are a few red bumps that seem they will linger forever.
Next. I have an appointment with my Cardiologist in June. I have been waiting for this rash to go as his most probable next treatment for my genetically high cholesterol is a drug similar to Repatha. The drug is Praluent. The base of this drug is the same as Repatha though all the extra ingredients are different. And so it depends on what specifically I had my allergic reaction to. Now let me tell you, I called the makers of Repatha in order to find out more about the side effects that other people were having. This would have in the least maybe given me a clue on how to treat as how long I'd have to wait in order to deal with my Cholesterol. They refused to talk to me. And all their Nurse service was allowed to do is read from the booklet you already have.
I have already been approved by Medicare to use this other drug. Will probably choose to take it as it is the only treatment that works that is left. It will take another 3 years to really become effective. And so I hope it is not as necessary as my doctor seems. Sort of hoping the approval for Praluent is still good by June. Also I have no idea on my cost. AS it came before Repatha it should be cheaper. HA! HA! Oh well it's back to trying to ignore my body's quest for life and Death.
is the quiet
a body in pain
to the rain
is the doctor's care
weeping willow dream
blind man's refrain
is the quiet
a body in pain
remember a world
remember the battles,
now stand aside
stain upon my dreams
i am no longer
then i am.
neither am i a mirror,
do i cry
while i'm alive,
all honor is gone.
i ask no more,
only of myself,
had learned how to fly.
dream of paris
an empty glass of wine
within open doors
feel a starís tear
an angel sighs
dream of sweet lips
i hold them still
dream of paris
a quiet soul
in the veils of rhyme
yearn to rage
by winter minds.
tired and broken
live or die,
a quiet soul
a broken body
a raging soul,
rains my evenings
on a riverís edge
wishing to fall
only time left to hear
scream the silence