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Billy N: CREST/Scleroderma and Raynaud's

An Invisible American

Stars for Billy by Shelley Ensz I am proud to dedicate this letter to the many fine medical researchers and doctors across the United States and Canada who, at their own expense called and counseled us on our journey to find treatment for a brain tumor; and to the Providence Cancer Center who now care so well for the bravest gentleman I have ever known who seems to be able to tolerate me on a daily basis.

The Invisible Americans

Today I am breaking a vow I made to myself to keep my personal life personal and not allow my own problems to become "political". I'm a private person and prefer to keep it that way, but the public needs to know that too many 'Invisible Americans' are being treated poorly.

I am a fifty-four-year-old female American citizen and when I was finally hit hard with a disorder called Scleroderma /Raynaud's /CREST the first time around 1988, I lost partial field of vision etc.

It was first biopsied and I was diagnosed at twenty-two years of age, and feel fortunate that I have held out this long. I applied for Social Security and was denied. Now I am told one is always denied the first time! How can that be? Either one is disabled or not. Within a couple of years, I found a good doctor who really diagnosed this problem and was helpful, but soon moved out of the area. I have not found anyone who knows anything about this disease since, except my PCP (primary care provider), who admits he can't treat it. My health has paid dearly for having the symptoms treated as separate illnesses.

At the same time, my health insurance canceled me and would not pay the costs because they said it was a 'preexisting condition'. It took me another two years to find out that I had been diagnosed years earlier with degenerative spine disease after another back injury, but I was never told about it by the on-call doctor.

So, I found another way, and I was prescribed some pain pills. I could not work any longer in the field of finance, consumer advocacy, credit consulting, and secretarial because my eyes cannot deal with fluorescent lights, computer screens, and repetitive movements of hand and eye. (And, yes, all medical claims can be backed up with facts.)

I cleaned houses, made some things to sell, and bought and sold furniture. I got us by with no help from the state in any way, but before long I could not do even ten hours a week.

A previous coworker kept offering me a job. I knew she was a difficult person but she said she had hired a girl in a wheelchair prior to that and was more than willing to accommodate my physical shortcomings. It was a very slow office, more like baby-sitting really, and I could work any hours I could manage. I had to work all daylight hours, as I had not been able to drive at night for ten years. I could even buy special lights for over my desk and raise my feet!

I put up with this unhappy woman complaining about the lights, wrist brace, and you name it, for three years! The hours steadily increased, 'or else', and soon I was doing payroll, etc. After they hired and fired 90 employees in a three month period, I did all the books, safety regulations, and training and I was expected to do the housekeeping, not get lunch or breaks, and was called an 'idiot'. She even wanted me to leave work and clean her house. I disliked it even more when she called her husband an idiot or if she really screwed something up, she told him I did it. They were gone much more than they were there, which became the only way to tolerate the job. I made a lot of good friends who I am privileged to see often.

The last day I worked, I thought I was dying. My chest hurt so badly, I could not straighten up or get a breath. After treadmills, EKG tests, poking and prodding, and being confined to bed by the doctors, I was told it was an ulcerated esophagus from the pain medications and the scleroderma. This was probably the fifth doctor to tell me to 'avoid stress'. It became a phrase that I have come to despise. I was not allowed to draw unemployment, because I had voluntarily cut my hours when business became slow again. My boss had requested I work full time, but wanted to cut my pay by $2.00 an hour.

Now, the bad symptoms of this connective tissue disease, scleroderma (simply put, it is hardening tissue, overproduction of collagen, autoimmune) that was first diagnosed in 1972 from the lesions growing on my body, which seemed to be occurring every day or so. The mobility breaks were further and further apart. My back and neck were continually 'out' and having spasms; partly fired up by the auto accident (I was a passenger) in 1974 that caused a double fracture of my pelvis, neck damage, internal damage, serious concussion and dislocated knee.

The wrist braces were no longer doing much of a job at warding off the numbness. Again, my doctor told me, "Why do not you go on disability? You must avoid stress!" Now, again I had no insurance and I could not buy a policy because of my conditions. Why can't we get Social Security to use the insurance guidelines?!

I could not take the pain pills again and get back to doing physical labor. Finally the kids were raised and doing well, except for the premature grand twins. Mama and papa were both gone by 1990, after twenty-five years of needing near constant care. I thought this would be the time I could find a real job and take care of just 'me'. Maybe I could get that degree at last.

By now I was living off a few IRA's and trying to start my own business. Social Security had just denied me again. Suddenly I was "overqualified" or I did not have a degree to suit an employer or they were scared to death that I would file for workers compensation because of my health problems. Sometimes I would get the jobs, because I had a great work record and plenty of references and could still get through any written test, and I can fake looking pretty good, but I could not get the insurance, without preexisting waivers, or I would be let go because I could not lift something, or usually see something.

I was becoming so clumsy. I did not know what else to call it then. The injuries seemed to come so often, that I did not even bother calling the doctor for most of it. The typical answer was more narcotics, which I could not tolerate.

Suddenly my good friend was sick. He dozed off in my recliner one afternoon and had a seizure. It was September of 1995 and I went with him to the doctor when we were told he had a brain tumor. Those of us who live with scleroderma refer to this as the BTU Sucker punch. No words strike you quite like these: "You have a brain tumor!" He was only forty-one years old, alone, and had always been there when I needed help.

It would be weeks before a neurologist could verify the findings and still they could not tell us anything except, "It is inoperable, it is untreatable, it can't even be biopsied. Go home and get your affairs in order."

The seizures started coming, three and four every night, always in his sleep. Can you imagine what it's like not sleeping a full night for three years? I made my good friend a promise that I would stay with him until he died and he could move into my spare room and we'd just get through this together. He continued to work for almost a year, until his boss decided it was time to call it quits. He's never quite recovered from not having his job. The seizures would not be under any control for over two years. I searched the world to find something to help. We could not get the insurance to let him see any specialists. They would not pay for any medications. We soon knew that if he was to get treatment we would have to find a way to find it and pay for it ourselves!

We went through a lot of natural and experimental things. He was finally awarded $1250.00 per month disability, but not before suffering the indignity of being sent to a psychologist by the Social Security Administration to 'qualify'. He asked the doctor if he could cure a lemon size brain tumor. This insane procedure needs no further statement from me at this time.

Over and over the stacks of forms came and between writer's cramp, numb fingers and strained eyes, I would fill them out. His disease has left him unable to read and write and remember even his doctor's name or the street he lives on. He was denied Social Security the first time, also. He finally got Medicare over three years after the diagnosis. He bought another policy, Blue Cross/Blue Shield, so all his doctor bills would be paid. But it does not work that way. They get the Medicare payment, send slightly more to the doctor and force the patient to pay a ten dollar co-pay each time. If you have only Medicare, there is no co-pay. The doctors are drowning in this madness, not to mention the patients.

By now, my savings were all gone. I finally got a job selling used mobile homes on commission. It was 108 degrees that summer, but every day that I could drive and work, I did. Then they would not pay me. Did you know that the Bureau of Labor will not pursue any commission job? I tried to hire an attorney. I did not have enough money and Legal Aid would not talk to me. They 'don't do labor'.

But I darn near had a degree in neurosurgery and chemotherapy by then! We found a doctor in Canada who could test the tumor for treatment, but it was going to take some money The insurance would not even entertain it. The only thing left was my house. We remodeled, sold my furniture and got it ready to rent. I would had to do that twice before to survive when caring for my ill parents, so we could do it again. We could stay a few months of the year on the property. Did you know you can only put an RV (recreation vehicle) on your own two acres a maximum of six months of the year? It was a real dog RV that we remodeled and became a sweet little home for awhile. It was not bad except for the times when I got so ill I had to crawl in the door, because I could not walk. I could never get in the tub. And it was cold.

I decided I had to quit smoking entirely, my personal demon, but was not having good results attempting it alone. The doctor prescribed Zyban/Wellbutrin. One prescription worked and I did not smoke for eight months. I could not have held a cigarette in those shaking hands on my life. I almost shook that trailer off it's wheels. It has never stopped. I have been diagnosed with essential tremors, inherited from my mother's side of the family. All of them had it. This was never going to happen to me! It may well not have except for the Wellbutrin, which is totally contraindicated with any previous head injury or tremor condition.

I cannot find a doctor that the Oregon health plan will cover to treat this either or get confirming tests. I have endured four years of everyone telling me, 'Don't be so nervous!' I have tried to stay out of public when I am sick or tired, because that agitates it all, as does the cold, only to be called, 'antisocial' or 'paranoid'.

I am still in the acceptance stage of realizing that all the straining and effort on earth won't stop these tremors. My voice is affected and verbal skills have become a thing of the past. My eyes were bad before but shaking eyes are really something else!

Well, we have had my house back for two years now. The renters destroyed it. My realtor suggested I bull doze it. Yes, I see that glazed look in your eyes. I had the best contracts, inspection sheets, etc.,ever! I had pictures. I went to court to evict this nice Christian lady, whose church moved her in and had good credit and references, except that it was all a fraud, but that's not against the law in Oregon, the District Attorney tells me. I spent my last $200 to hire an attorney to be told that I could not afford to win. Yes, the renter has plenty of money.

We sold the trailer to get money to make the house livable and at least it's now clean and it's starting to look like home again. We work at it when we're able. Our recovery period is generally longer than the production period, unfortunately. Good friends have donated some materials. I still have good credit, so I put some on the credit cards. But now that has even come to a halt. All my means are exhausted.

My friend is having a rough time with infections in his jaws and head. His doctor is frightened because the Dilantin he must take for seizures cause overgrowth of gums and loosens teeth and dental work. Antibiotics and pain are his companions now and an infection may kill him before the tumor. We found a new chemotherapy that has slightly shrunken the tumor (over $1000 per pill!), but this forty-eight-year-old man weighs 120 pounds. He is so very ill, afraid and disheartened. No, the insurance will not cover the dental work required to possibly save his life. It is over seven thousand dollars. He has no money. I have nothing left but the house. When it is gone, I do not know what will happen to my friend. Disability services say they don't help with dental or insurance problems.

It's a cold day in Southern Oregon, so I will end my rambling and go home to baby my knee and back and shake in privacy. I hate yelling out from sudden pain in public when I shake my neck out of joint. This happens a dozen times a day. You get some really funny looks. I have spent too many years hiding my illness and denying its existence.

First, I will take down Old Glory before dark, cover my flowers and look at the mountains from this yard that I love so very much, this deserted piece of land that no one wanted 30 years ago. Many of my big trees died with the renters, but it is still beautiful. We had firewood for awhile. Most of the trees were saved so that my babies can climbed them, and their babies after them.

Wherever this system sees fit to 'place us', my heart will be always at home. Something is wrong when you earn six dollars an hour and raise your kids and pay for a piece of land but cannot live on it when it is paid for. I will not be able to pay the taxes this year. I tried to borrow money when I had it rented. The credit union called and said, "You have pristine credit, but you do not make enough money." Well, pristine credit is better than most. I suppose that is something.

I planned well and was going to retire quietly someday and enjoy this home I worked so very hard to provide for my family. I thought there might be a time to enjoy it, instead of just work on it. I have just received another denial from Social Security and more stacks of papers and more searching for records (they do not keep them and ask for the same ones over and over.) They tell me it will be another twenty-four months before I could get an appeal. It would be nice to have a lawyer. Those seem to be provided only for criminals.

I have just spent two days in three-hour sessions with the State of Oregon's psychologist as a 'requirement for temporary disability' of three hundred and thirty dollars per month. I was the only one in his office for over eight hours. I was there for the ten A.M. appointment, but they weren't. I got to sit out in the cold parking lot. His front door almost ripped my leg off, because it would take a linebacker to open it.

He counts ten years between 1974 and 2002. He said I was not sick, I was a hypochondriac and my mother was a hypochondriac and worse. Mostly he talked about sex. I was only allowed yes and no answers to a bunch of perverse questions. But, I finally remembered what sex was, and I have informed the good doctor and the state I will not be back unless they test me only for what my claim is for to deny or confirm my conditions.

Worst of all he has no sense of humor. I threw up in his bathroom. I throw up every day since the Zyban. I would have done it on the carpet, but I knew the state would have to pay to clean it up. State must pay pretty good to keep four people working with only two or three clients a day. Clearly, this psychological 'testing and profiling' for the government is lucrative. And clearly, this is not a requirement for all disability applicants, but based on some bureaucrat's whim. How easily they play with people's lives.

There is more to this story, but I have tried to keep out the unbelievable and the bulk of gastrointestinal portions. Now I am told, and most people have no idea that Social Security (SS) works this way, that only the last seven years of work count toward your SS retirement or disability. This can be found on their website. I finally stopped trusting and have started verifying everything. If you do not have enough earnings in those last few years, you have no benefits, ever.

Another sad irony, is you must have an attorney for these claims. One told me that they and the government have an agreement to only charge the taxpayers twenty-five percent of their benefits; and twenty-five percent of a few hundred dollars is not enough to bother with.

Perhaps the scleroderma, the Essential Tremor, the broken down bones and joints, the pelvis that healed crooked and the twisted, and the deteriorating spine will just go away and I can get a job and work another ten years, since my first forty years of work and paying into the system now mean 'nothing!'

The shrink says I am paranoid. Perhaps. Yes, I worry who might take care of my friend if he should outlast me. I worry about not being able to keep that promise I made. I worry about not being productive and vital and helpful. But mostly, I worry about the sunken pit our social, medical/insurance and legal system has become. I am not naive enough to believe this is only happening to us. And yet, I am still PROUD TO BE AN AMERICAN, because you and I, for the moment, have the power to change this.


An Invisible American

To Contact the Author

Billy N.
New email address needed
Old Email Prefix: auntb
Story submitted 4-28-02
Story posted 5-24-02
Story edited 9-1-03 SLE
Email note posted 01-24-05 SLE

Story Artist: Shelley Ensz

PDF Brochure: What is Scleroderma?
Go to Birilla: CREST and Bilateral Thoracic Outlet Syndrome

SCLERO.ORG was the world's leading nonprofit for trustworthy research, support, education and awareness for scleroderma and related illnesses from 1998 to 2021. It was a grassroots movement from the original Scleroderma from A to Z web site, which was founded by Shelley Ensz. We were a 501(c)(3) U.S.-based public charitable foundation. We closed this web site and our nonprofit agency in April 2021.

International Scleroderma Network (ISN)