Voices Across America

Make yourself heard and let your representatives know what your life is like with a rare disease.

Jim

State: Ohio
Congressional District: OH 01

Diseases

Bone / Muscle Disease, Chronic Pain, Eye Disease, Immune Disease, Lung Disease, Mental Health, Migraine, Neurological Disease, Rare Disease, Skin Disease

Issues and Challenges

Jim has encountered: Access to Expert Providers, Access to Medicine, Copay Issues, Insurance Issues, Medicare / Medicaid Issues, Rare / Underserved Disease, Disability, Invisible Illness, Job Insecurity / Loss, Social Security Disability

My Story

I was diagnosed with sarcoidosis about ten years ago, after 3 years of misdiagnosis, including a 6 month scare with a misdiagnosis of lymphoma that included two open chest biopsies. One pulmonologist went so far as to tell me my extreme breathlessness was just because I ‘was fat.’ Of course, he’s now my ex-pulmonologist.

I have been diagnosed with an advanced form of sarcoidosis, with multi-organ involvement – lungs, lymph nodes, eyes, skin, and nervous system. Compounding my struggle, I also suffer from several rare and not so rare autoimmune disorders, including Sjogren’s Disease, Rheumatoid Arthritis, Psoriatic Arthritis, and several others. Many people with sarcoidosis, are often diagnosed with other immunological or autoimmune conditions.

In the beginning, I began a treatment protocol of high dose steroids. While it did result in some reduction in the inflammation in my lungs, it also resulted in both weight gain and severe migraines that continue even today. It was so frustrating when my doctors told me over and over again, at every visit, that there was no other treatment possible specifically for my sarcoidosis. I was simply amazed.

In conjunction with my rheumatologist, my sarc doctors did try several different treatments, all not officially approved for sarcoidosis. There was little impact to my symptoms or the disease progression. We tried chemo & biologic, along with other autoimmune-related treatments, but none were found to be effective in controlling my sarcoidosis:
Eventually, I had to acknowledge that I could no longer work, even part-time, due to the heavy burden of sarcoidosis. I applied for and was approved for 100% Social Security Disability, on my first application. In a matter of just a few years, I went from an otherwise healthy, 50ish guy at the peak of his career, to someone who could not hold a job of any type.

That was six years ago…My life these days can be best described by what I call ‘Recliner Time’.

On ‘good days,’ I usually don’t hit my recliner until about 5PM. But, on ‘bad days,’ I may be in the recliner at noon, and on some ‘really bad days,’ I move straight from bed to the recliner in the morning. Nevertheless, on all days, after 6PM, my body is shot and I have zero energy left. It is like my energy switch is turned off, and pain switch is turned on. After that point, pretty much all I can do is sit in my chair, on a heating pad, and take meds on nearly an hourly basis to fight off the excruciating pain. Sometimes the meds are successful, sometimes not.

I have been forced to give up so many things that I love because of what is happening to me – gardening, travel, friends, family events – just to name a few. I hate this disease because of the impact not only on me, but also on those around me. I have had to give up leadership roles in my church and I was forced to retired from my dream job all because we could not stop the degrading of my body. We still get asked all the time, ‘Hey, do you want to meet for dinner Friday night?’ or ‘How about we catch a Red’s game this year?’ But my body won’t let me. You don’t know how much my wife and I would like to say yes to every invite we get. It’s surprising we still get asked out at all anymore!

Now, it is not all horrible. About five years ago, I became involved with the Foundation for Sarcoidosis Research and became empowered to take control of my disease. I also became a volunteer Patient Advocate where I can help others with this disease to locate knowledgeable healthcare providers and give tips to understand and live with this rare disease. I am also a speaker at patient engagements, and also blog about my life with Sarcoidosis.

And my wife and I have adjusted our home life. We have learned to go on breakfast and lunch dates, and try to catch matinee movies when we can. Even then, we have to wait to see how I am feeling when I wake up each day…usually a less than 50/50 shot. All-in-all, we have learned how to live a meaningful life, despite the very heavy burden of living with a rare disease.

My Motivation and Inspiration

Sarcoidosis has an immediate and lasting impact on patients & families. We need a wider spectrum of treatments to cover all of the symptoms that sarcoidosis presents, not only pulmonary, although that is still very important. We need help with pain, fatigue, cognitive impairment, small-fiber neuropathy, and so on. Steroids cannot be the only go-to treatment for us. We need more clinical trials that have increased patient input early on. We must have better testing mechanisms to speed through more therapies.

And we need this now. We sarcoidosis patients just do not have time to wait. Each and every one of us is losing bits of our lives every day. That is why I encourage all rare disease patients to become involved with their state & federal legislators. It is only by speaking up for what we need that we will improve our quality of life. Make yourself heard and let your representatives know what your life is like with a rare disease. Together, we can make a difference!

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