Cheryl Sunshine Benson's Page

I was diagnosed with CFS - also called Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and (Fibromyalgia (FM),in 1991 , developed MCS - Muliple Chemical Sensitivies, and had to stop working in 1994 and have been mostly house/bed bound. Although diagnosied by 2 Infectious Disease Specialsts adn going through a battery of tests to rule everything else out including liver tests and scans at the time, , one Infectious Disease Specialst who diagnosed myself and over 400 people by 1991 since the epedimic started in 1984 although he gave me literature of it back to 1934, many of the healthcare were saying it was phychiatric", which it is not and has been the cause of alot of discrimination and harm those that suffer from it. .

Although I was told I had Chronic Fatigue Syndrome he said it was almost idential or was idential to Myalgic Encephalomyelitis in 1991.

ME/CFS by the Ontario Medcial Association, November 2005 is classified as a NERUOLIGICAL ILLNESS DIAGNOSTIC CODE 795 and 'Fibromyalgia/Chronic Fatigue Syndrome care' has now the OHIP time-based billing Code number K037, you can thank the national me/fm network and Lydia Nelson and the people who worked on the Canadian Case Definintion for that. However, WHO Neurolgoical Diagnositic Code (since 1992) encourage the classification of ME as a 'Nervous System Disease,' as worded in the ICD-10 G93.3" , and the decrimination persists, I am still told in 2008./2009 that it isn't a neurlogical illness, many don't recognize it all right here in Ontario.

. We have been denied proper medical care, disability (for many), research, funding, treatments, homecare, supportive housing/housing and there is great amounts of stigma and; lack of education by our governments to the population or to/by medical profession,

Someone with severe ME/CFS health and quality of life, is compared to the last 6 months or even 2 weeks of someone with full blown AIDS. I, as many with ME/CFS was given many prescription drugs (and for the wrong treatment/ repeateded mis-diagnosed from the adverse reactions of the drugs), who repeatedly refused to take my long adverse medication history into account (that was considered pshcyatric - another DSM label as well because I couldn't tolerate most of the drugs and doses far beyond what I could handle). I have POTS as well, l low blood volume, tacardia ,low oxygen levels, and listed about 30 ME/CFS symptoms back in 1993 to my doctor, the neurogloical, cognitive, sensory overload, my Central Nervous System was way over regulated, my hormonal imbalances were extreme and worsening the rest of my symtoms, I listed these as the worse witht he post extertional lead like fatigute.as the worst, the pain from my FM a close 2nd, often a first, and that was totally ignored until 2001 and I had been left eating bottles of 500mg Tylenol pills for 10 years which turns out damages your liver. In 1993, a new blood test came out for HepC, and I said I would take it along with the HIV, the HepC came back positive the HIV repeatedly negative.

I was referred to a pshycatrist for neurlogical problems, insominia, I only light depression in 1996, I had develoed SAD in the winters about 5 years after I got ME/CFS, which were at first focused on with some success. I was sent to a neurologist for possible temporal lobe eplispy, she thought my highened radar as she called it may be that. . I was dismissed from the neurologists office, no testing, when I said I had ME/CFS. That same neurlogist I was told in 2008 that they don't believe ME/CFS is neurolgoical and refuses to treat for. I was told by others as well after the 2005 Diagnostic Coding by the OMA in 2005, that they didn't believe in, or would refuse me treatment because of it.

After 1996, I started down the long road and antidepresant hell and related medications,without proper informed consent, not told what the adverse reactions were, side effects, damage they could cause, often not told what class of drugs I was being given and quickly went into the black hole of depression, Major depression caused from the drugsI had never experienced before in my life, and endured 10 years of serious adverse reactions one after the other. I keep telling them to keep the dosing low, that I felt better coming off them as the dose got lower in my system. I took the pills, they and those who give them have alot of power over you especially once yhou are in that black hole, thinking the next pill hopefully will get you out, which I kept being told.

in 2003 I was again serioiusly misdiagnosed as bipolar because I couldn't tolerate the drugs and dosing and had gone hypo manic on celexa with was in the drug trials, and can also cause alot of permanent damage. . I was on the bipolar med's for 3 months that damaged me for life, I had already deterioated so much from the years of one antidepressant after the other and other drugs, I was a mess, I didn;'t think it could get worse. I was seriously brain/body damaged all my muscles and ligaments causing them to be shortened, stiff and very weak from head to toe in 6 days, refused medical care, diagnsois, treatement instead systemic collusion started. I had to have wheelchairs, I couldn't push a manual, I couldn't lift more than a light book, prepare food, cook on the stove,help bathing and often needed help dressing which became permanent. Every doctor and hosptial involved refused to hosptialize me, to keep the damage off the records or any diagnosis although I have little doubt what it was. The damage, the extent and diagnoisis still is not on my records.

In March 2003 Acute dystonia with seizures, the acute part stopped after 24 hours and in ER, but the dystonia and seizures continued for 2 more weeks. , Not listed on the records correctly either and the first time I was abused in a hopstial, I was abused verbally and or physcially in every h osptail thereafter, to keep the damage off the records and me out of the hosptials and from suiing for malpractice.. Phsycahtric had been added to my medical files for unethical practices by several doctors and adverse reactions to medications that were misdiagnoised, and were kept on to cover for the damage, as well many of therm are falsified..

I came off the drugs in 2004, and I was alot more damaged, the left side of my body paralized, my head hit my chest, my speech, as like a stroke, they said there was a leison then a blood clot on the right side of my brain, no MRI was taken at the time, we were told that what was written on my medical files no doctor or hosptial would want to give me an MRI or Catscan and could get in trouble for doing so. My mom had to threaten the ER doctor to get a catscan. The written report came back that it was normal almost a month later, while my left side was still paralzing and dragging around which remained weak and is often a percourser to myocolonic Dystonia coming on, I also endured sevreal years of seizures, that they wrere hiding under phsycatric even thou I had a posititive seizure test when coming off the drugs and paralized in mid-air. I got drug induced parkinsonium from 2 of the drugs, and I develoed and spasmodic generalized dysotnia, as well which can get quite severe and has spread through my body on top of the already damaged muscles and ligaments. As it spreads, it is called generalized and is in my face, hands, neck, feet, down the outer calves of my lower legs along my ankles into my feet, and has gone down my spine which is gruesome, causing it to cramp and shorten, just liek the the acute dystonia, as well as the whole left side of my body often pushing it to the right, the weak side, which indicates there is damage on the right side of the brain. It goes ond and off throughout my body, however it is now daily, different parts, I haven't remained permanent in one position so far, many do. I have the myocolonic dystonia I wake up to or shortly after every day, also kept off the files an d left here, badly damaged, and convulsing and very ill every day since I came off the drugs in 2004. I was cut of doctors in late 2004 and medications and left here, by medical records badly faslfied.

Since 2004 I have been almost totally bed/houseconfined, almost totally bed confined for some years. The trunk of my body is also damaged after the acute dystonia, and I have trouble sitting up, as well as the movement disorders I endure every day and the pain. My shoulder shockets are so damaged left like this i often cry from the pain, and the daily convuslions and now the dystonia downmy spine and other areas.

. From 2003 to 2008 6 hosptials were involved some repeatedly. We tried for help from all levels of government, and others, and I was purposely more isloated. My mom kept me alive for almost 3 years, and cant anymore she is too ill herself and has a fractured spine which has greatly worsened. I can not bath myself, I can't even be bathed unless I have enough energy to even get out of bed adn be able to sit up, not in too much pain, the movement disorders are under control and the left side of my body not weakened, it is often a precourser to the dystonia convuilsions, or seizures coming on although I don't have seizures that often any more, I have small ones, I did endure several years of serious ones lasting 5-12 hours with no medication or help.

My mom was also abused in 2 of the hosptials, one phsycial assualt, tyring to get me hosptialized. We tried through government parties and the Ministry of health who in 2004 was to have an investigation and didn't, and in 2005, started settting up having me hosptialized for everything, and then backed out. My long time friend of over 20 years said I had been relegated to the outbasket again.

Mine isn't an isloated case by far.

I also have managed to sponsor Kainda and her family in Chad Africa since 1996, since she was 3, she is a young woman now and finally a smile is in her eyes and face. - actually I just had to stop Sept/09 I should have stopped in 2003, I hung on until she was 16.

I am without doctor, my insurance needs doctors signature,, and all my supports and medical documentation for asssitive devices program, supportive care housing (after the abuse and having every all of the clients bill of rights broken by the prior acess center who covered for the doctors and hosptials, I am hesitant to say the least to have the govenment involved, or given any more power in my life), they were all falsfiied by doctors involved, almost every government form was that you can think of including my LTIP insurance. Leaving me with no supports and thousands of dollars worth of supports entitled to since 2003.

I still alive, I didn't think I would live with the ME/CFS and FM, my ME/CFS has alwasy been severe,. Of the 7 subgroups, genotypes, I am #7. With all the extensive damage and what I endure every day I truely do not know why or how I am still here.

I am about pallative many days, and mostly bed confined, I am daily in and out to varying degrees for periods of time, some days better than others, with extensive damage on top and convulsing every day, this has worsenened everything. I have been using naturals to heal as much as can, but still need medications I have been cut off and were never the right ones and honest tests and diagnosis (many) and on my medical records, and recovery at a very slow place I can handle that anyone else with Aquired Brain Injury (ABI) is afforded in canada.

My present focus, as i smy mothers still, is to get me the honest neurlogical medical I have been denied.

I am also a member of the National ME/FM Network and have been for years, and prior in 1994 CIFDS of America, that's all I could find back then, I didn't get online until 2001.I was hopeful for Amplegin, there has been varying degrees of success to none with it, that has been thrown around for 2 decades now. It also works on HepC, HIV and Cancer they were testing for it.

I have found out that many of the drugs used for dysotnia's, cause damage or even dystonia itself or dyskensia, and it is another crap shoot they play with the drugs to find out which works for you. , I have researched them and now wonder what I am fighting for, for honest neurolgoical care, I don't want to get back into that cycle of drug experimenting which they have to do they don't know usually which ones work on whom. I am rather terrrified They do brain surgery as well, some successful, some have done more damage.

In june 2004 I figured out I had dystonia, wich also was ignored by the doctors involved. A neurolgoist involved since 2004, finally put it on a disabilty form in late 2009, not the right diagnosis of what types, I had someone with me, i think he got scared this time, andput it on, as well as siezures. I barely made it there, and had hired a private ambulance, someone got me there without it, it was the first time out since 2007.

I have lost my faith in the medical community and healthcare providers, I had some really good doctors in the early years after i got ME/CFS, I am trying to remember that and that there are good doctors out there. There was so much extensive abuse in the hosptialitals, I became badly tramatized, as well as being left like this. I am still working through it.

I hope to see changes in the medical profession, and the hosptials so that they are not above the rule of law and more stop gaps put in for civilians and our association to support us, as the Canadian Medical Protecdtion Association is publically funded with out tax dollars to keep us out of court as much as possible, and the integrity of doctors at almost any cost and states so right on their website. I think Tommy Douglas would be rollling over in his grave.

I often can't type unless my muscles and ligaments are softenend enough, or I type the way my brain chops off words, or the way I speak which is often distorted, often I can not speak at all now as it has worsenend.

I had abit of improvment, not much in 2008 and started up my cause again to get the honest neurolgoical medical care, and supports after, my medical records cleaned up they in themsevles cost a fortune to get, and the College of Physicians and Surgeons says there is nothing they can do, they can't force a doctor to do any thing, they rarely do unless for sexual assualt for severe case which is rare indeed. They used to be held in secret, I found out the discinplary hearings if it makes it that far those involved are allowed to attend now, however without lawyers, your chances are slim, let alone the human rights commission.

time is long over for malpracticde and negligence, they are still scared, my records badly faslfied a high maintenance case. I don't know how I am going to get a doctor that comes in house and has any knowledge of ME/CFS, I am tired of teaching doctors about ME/CFS, i guess though grateful to the few who werer willing to learn about it in the earlier years. I am fed up with the discrmination that still persists and often used as an excuse to deny me or others medical care.

So, will be reaching out publicly for help soon i hope, although I start and go as often I am in bed for several months and can only look a the computer or delete my email much of the time. since the first brain damage my cogntive abilities greatly worsened as well and continues, which was noted on care documents I had to fight to get from 2003 to 2006, that I was entitled to by law from the start,

My neck and waist in my spine keep giving out. It first happend Jan 2004 when I came off the drugs, my neck anyway. Now it is frequent, and my head has smashed into the laptop smashing it, or on the coffee table, or couch, or bed, which every way it gives out. Also a new development is, parts of my body totally giving out, the weak left side gives out and I land on the floor, and my knees. The spasmodic dystonia is worsening as well as it spreads more rapidly.

IMy mom is quite bad off, not as much as I but she is quite older, and I am not looking forward to her passing, we have wondered which of us will go first through this, we have both aged many years ina few from what has been done and endured.

How do you regain your faith back, in a mostly arrogant medical profession that cover for each other when someone is harmed instead of helping them.

It's a process and a journey, I have been a nhuman activist for some of my life, and this has proven the most challenging, fighting for my own rights. I never thought this could happen in Canada, it happens worldwide.

My focus is on keeping me alive, i have someone keep me alive i can;'t myself, I have tohave my clothes changed which i mostly live in, showeered which can't be done unless themovement disorders are under some control, I only have 1 medication for the dystonia, we had to beg for that doesn stop the myolconic dystonia, I can't prepare my own food, or lift much more than a ligght book, the ligaments under my arms are so badly damaged.

onward, i need to rest, I wanted to update this while able. I check into groups, I am not here to participate much, I am fighting for my life and quality of life, I do come in a look often without posting, often that is all I can do, if that. .

The support I have gotten from a few especially privately is greately appreciated, I cna't tell you how much. I saw a video of people getting brain tests I was to have in 2004, 48 hour EEG with video, and they refused to , someone sent it the other day, and I thought, there are good doctors out there and I have to keep remembering that.

Namaste
Cheryl