just My Un-Blog of A Life Disabled
just My Un-Blog of A Life Disabled
20 years with continuning multiple strokes. no diagnosis so far.
" An old acquaintance from my teenage years was recently in contact. He is presently Retired at 60 and healthy; one of the many lucky ones. After hearing of my disability he wanted to offer his understanding. It seems that in his forties he had a scare, but also had a cure. He went on to tell me that because he thought about becoming disabled, he could understand. Well, I do believe intellectually he is aware that being disabled sucks, but he has no idea on how hard it is to become and accept that you must be so much less then you are. (Still am inside) What follows might give a vague insight into a battle to both survuve Physically as well as keeping your soul alive. Or not. Most of this was written to retain the chronological memories for the needs of my too many Doctors, in lew of a loss of control of the ability to grasp any memory when needed. Don't know if this could help anyone deal, because you con't deal, only live with it. It's not strength but the lack of choice we disabled face!" So follows a history, still being written.
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.
July - (2 days playing ball in 90+ heat) Woke up 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 test 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 White Plains, NY and saw DR. Ute Traugott.
Additional Symptoms were Spasticity, Fatigue, hyper reflexes, extreme fatigue, swallowing problems, jumpy legs.
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 Federal Disability on Advise of Dr. Traugott and inability to keep up with work.
May - 3 attacks foiled by 2 days after 2 day stomach 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.
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.
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.
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.
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.
September - Diagnosed with Avascular Necrosis. Failed 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.
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
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.
Diagnosed with a Abdominal Aortic Aneurism of 3 cm, on a follow-up CT scan for a kidney stone.
Aneurysm has slight increase in size. Dr. Innerfield to check it every year instead of two.
March - Seeming onset or extreme increase in periods 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 See 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.
January - Took Dr. Smith that long to get 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 all 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 any increase in lesions over last year. Results were No Change.
May - Saw Rheumatologist a Dr. Meyer of New City, 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!
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,
i had learned how to fly.
an angel sighs
i dream of paris
of cafe sitting
a quiet dusk
fills an empty glass of wine
"muddy waters" plays
from within open doors
i feel a star's tear
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
i dream of paris
i could die.
oh my eyes
a quiet soul
on a quiet soul
lost in the veils of rhyme
long times gone
dreams who have
i yearn to rage
in the light
of a stage
carved by winter minds.
so tired and broken
this crippled body
just to write
one more page
just to thumb
one more road
to live or die,
on a quiet soul
a poet sighs.
just to fall
in a broken body
lives a raging soul,
legs won't walk
those mountain dreams
cries my simple
can't even try
can't even try
it rains my evenings
here on a river's edge
almost wishing to fall
and only time left to hear
crossing the line
crossing the line,
i scream the silence
yes i mind
wishing to fall!
does it know
lie where beneath