I'm Not Disabled, I Just Lose Consciousness a Lot

by Jennifer Lewitt
(Grand Rapids, MI, USA)

In March of 2007 my health took a rapid decline after I suffered a slip and fall accident, causing a concussion. You see, I've had a lot of head injuries resulting in loss of consciousness - at least seven. I remained nauseous and dizzy and continued to have seizures and fainting spells for over a month. One doctor blamed it on being overweight. Huh?

My car was also stolen and I was separating from my husband at the time, adding to my stress level.

Unable to effectively continue my work as a florist (8 - 16 hour days, using a sharp object while standing - consciousness and lucidity required) I lost my job in May due to failing to show up to work on time and from being sent home after a loss consciousness, a period of extreme confusion, vomiting, or having a seizure too many times. Around this time I started having high fevers (up to 106 degrees) on a regular basis, at least three times a week. Whenever my fever peaks over 104 it is pretty much a given that I'll have a tonic clonic seizure.

I've had some pretty bad aches and pains for the previous 5 or 6 years but I thought they were just the results of having a standing job which required me to use my hands all day. I just took a lot of ibuprofen and figured it was normal for my increasing age. It often took 4 200mg ibuprofen taken in the morning plus a half hour soak in hot water to decrease the pain in my feet enough to walk. This is when I was fine.

With the onset of those fevers, I learned what aches and pains REALLY are. The best I could achieve was tottering around like an old crippled woman for less than fifteen minutes before I'd break out in a sweat and chills and become faint and fatigued. I also developed a red rash on my face, sores in my mouth, my hair started falling out, my eyebrows disappeared, and I had a low grade fever at almost all times - except when I had a high one. Fortunately, the nausea and dizziness had mostly abated.

Through an agreement to stay married to my ex-husband until the end of 2007 I still had insurance and frequently visited my doctor and various specialists. None of them came to any diagnosis other than "fevers of unknown origin" and fibromyalgia plus hypothyroid disease and an "unknown autoimmune disease."

I kept asking for medication for the seizures, fainting spells, and fevers. I kept getting a runaround - they couldn't try anything without a diagnosis.

My own Internet research suggested I might have lupus but I couldn't get my doctors to test for it.

My insurance ran out when my divorce was finalized in December.
My savings ran out in February of 2008. I had tried taking two different floral jobs in October and November but lost one due to requiring an emergency room visit the first week and the other because I was seen taking Vicodin (prescribed by my doctor) to handle the pain of standing for only four hours.

In February 2008 I applied for Disability as well as state aid such as state medical insurance, financial assistance, and food assistance. I was doing this when I was down to $25 in my checking account and had exhausted all other options. I was deeply ashamed of being forced to beg for help. I felt like a total piece of useless crap.

The gentleman at the Social Security office was very nice and sympathetic. My social worker at The Department of Human Resources was not. She was rude and didn't seem to know what she was doing. It was humiliating. She treated me like I was too lazy to work and didn't deserve her time. Ultimately, it proved she was incompetent. She never filed my paperwork for state health insurance or financial assistance. I called many times telling her I didn't want to get welfare, I just wanted medical assistance so I could get diagnosed, medicated and back to work.

When I took my various paperwork to my general practitioner, both from The Department of Human Resources and from Social Security I discovered my family doctor was unwilling to fill out Disability paperwork as a rule. I was informed that if I paid $500 I could receive a Disability exam that the results of which could go to both agencies. It may as well have been a million dollars.

I was flirting on the edge of homelessness, relying on friends for food, shelter, and care when I had my seizures and fainting spells. I was having suicidal thoughts and deep depression from my fear of becoming homeless. I had been homeless when I was a young woman and repeatedly raped and brutalized during that time. I determined that I'd choose death if I became homeless again. Back when I was fine, I had already been taking anti-depressants for my panic attacks and PTSD.

I managed to get a copy of my medical records which both agencies agreed to accept. The doctor told me to keep the envelope sealed. However, I opened it as soon as I got into my friend's car. Reading through it I found out I had a brain tumor which had shown up on an MRI many months before - and no one had bothered to tell me about it.
In any case,

several months later I went for a Social Security Disability Mental Health examination. It was determined I suffer from panic attacks, depression, and PTSD but my intelligence is high and my memory is good so none of those are barriers to employment.

I got my denial a few weeks later. Since my fibromyalgia only causes pain and fatigue but does not prevent mobility they determined I could still perform my duties as a floral designer. They determined that even though I was losing consciousness more than once a week and suffer substantial pain from standing and occasionally become delirious I could resume my 8 - 16 hour day standing job using my sharp tools. Apparently since the seizures, fevers, fatigue, delirium and fainting don't have a diagnosis (but plenty of solid medical documentation) the only thing they considered was the things which have a diagnosis - the fibromyalgia, PTSD, panic attacks and depression. Basically they were telling me I was being lazy by not working.

I sunk into a depression, frequently contemplating suicide. I felt completely worthless, like a parasitic leech that deserved to die. By this time I had a significant other and but for his love and support I know I would have killed myself.

I was told that without further medical care and diagnosis of my condition(s) I shouldn't bother appealing the decision on my Disability. My significant other helped as best he could but was unemployed at the time, his government funded job having ended. I had no way to pay for medical care and my condition was worsening. It was terrifying to have frequent seizures and soaring temperatures and to be unable to seek help or get medication.

Desperate, we did more Internet research to determine what drugs were used to treat lupus and in what dosages. We then scraped up enough money and ordered the drugs from India. One of the preferred drugs, Plaquenil, was not available so we had to go for an older, less effective drug with more side effects. I then started taking the medications from India.

My fevers have become fewer and fewer and much of my joint pain has subsided. The rash on my face has pretty much disappeared and I seldom get mouth or nose ulcers any more. I am still very fatigued and suffer from seizures and loss of consciousness, probably once a week on average - a vast improvement over almost daily bouts. I seem to be improving steadily over the months I've been taking the medications from India.

What I'm doing isn't strictly legal but it's the only way I can survive. Hopefully, I'll get back to work in a few months. I've been writing almost constantly since I've been ill and I've sold quite a bit of it, though nowhere near enough to survive on.

I did not appeal the decision to deny Disability benefits - without money to see a doctor there was simply no point. I've paid into Social Security all my adult life, at times working more than one full-time job. Now that I need the money that I've paid in, they find loopholes to avoid paying it out. A Social Security worker told me how to contact her once I become homeless and how all of her other homeless clients do things. Is it just me or is it messed up that sick people have to become homeless after paying into Disability Insurance all their lives?