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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?

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

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Feb 06, 2012
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I'm Not Disabled, either
by: Anonymous

I get my medications (prednisone and antibiotics) from the Philippines. I have a genetic immune deficiency--related to the 'boy in the bubble' disease--and even with my meds, I've just come off of two months of being bedridden on and off. One specialist told Soc. Sec. that I am no longer sick. This makes me the very first person to spontaneously recover from my condition (sarcasm). After years of hospitalizations and blood tests showing my body doesn't make antibodies the way it's supposed to, one doctor's word was enough to stop my benefits. I can't afford to see doctors now. I can't get food stamps or medicaid because I'm not 'willing' to get a job. We live right around the poverty limit. Some system, huh?

I've been blogging the last couple of months at www.debsisland.blogspot.com . If you're bored, you can go back a few weeks and see how sick I've been. Too bad I couldn't get a representative from Soc. Sec. to spend a few days here during one of those times.

Good luck! Thanks for telling your story.

Feb 20, 2011
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help for disability denial
by: Anonymous

You guys have GOT TO CONTACT A social security attorney asap! When you get your first denial, you immediately call an attorney as you only have 60 days to appeal. The attorney may be able to refer you to a clinic or other just to get any treatment until the hearing date, or until they can convince Social Security to issue you benefits on the record. If you haven't appealed the denial and 60 days is up, you need to re-apply ASAP, await the denial and immediately contact an attorney! I just happened to be on the internet and somehow ran into this website. I am an attorney, but my advice is not given in order to gain your business... re-apply asap and await decision, then call any social security attorney!! Don't give up!

Nov 27, 2010
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Contact Me
by: Anonymous

I have been looking for you on the Internet. Please contact me. Go to http://www.whitepages.com/person and put in my name and 20603 for the zip code. Love you. Your brother.

Dec 07, 2009
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Anything not to help
by: merideth

I too have been officially diagnosed with anxiety/panic disorder and have had 3 seizures causing loss of consciousness at work and at home. My place of work saw fit to lose me with the first wave of layoffs this year. Additional seizures and pain have made the very idea of finding another job awful to entertain. I'm using unemployment now.

However, I also order medications illegally so that I may continue to function because of the reasons stated in the article, there is just no way around it. If social security will not provide benefits to those who have paid in all of those years, we have to find a way to maintain in order to survive.

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