By: Dinah Younger
Seems I was born sick. I never remember a time I felt well. I was smaller than everyone else and could not keep up. Growing up I was the outcast. The one who had learning problems and couldn’t do things like swing on the monkey bars, etc. I also did not go through puberty and have my first period until I was 16. I complained of fatigue and pain and times I felt faint or shaky but family, friends just looked me up and down and said you look ok to me.
When I was in my twenty’s I became a single parent and everything went quickly downhill from there. I struggled to care for my son who turned out to have Duchennes muscular dystrophy and hold down a job. I began to go to Dr.s begging for an answer to my symptoms.
That started the wild ride.
I’ve heard just about every possible diagnosis. Everything from lupus to fibromyalgia to lymphoma and many more. I learned to be an advocate for my son and felt the frustration of dealing with government red tape. Also the depression of finding out that the best treatments and specialist are reserved for those with money or at least lots better insurance than Medicaid. Very few Drs take it.
I’ve lost count of how many times I needed a specialist only to find that the Drs who specializes won’t take the Medicaid or disability insurance or even if there is one it’s three states away! Right now I’ve just about seen every Dr. in the three counties around me. I have fired more than a few Drs.
The most recent one was were I did research and went to the appointment with questions and suggestions for scans and tests. The Dr stood up over me and said that he had already told me his opinion and that I was a waste of his time! I fired his butt and even reported him to the AMA.
Fat lot of good that did. As of this telling of my story I have six drs. Most of them do try but with little success. I take 16 pills a day! For everything from high blood pressure to high blood sugar. And things in between like for pain, allergies and I. B. S-C and thyroid. They help very little. I’ve been mostly house and bed bound for 10 years.
Recently it was suggested I see a rheumatologist. Well, I have come full circle. For the only rheumatologist in the area who takes the disability insurance is the one who first diagnosed me 28 years ago. He’s also the one who I’ve seen several different times for things like referral to physical therapy and official diagnosis of Fibromyalgia for disability. Each time he would ask why I was back for there was nothing more he could do for me since Medicaid would not pay for things he wanted done like acupuncture.
The last time, and I’m determined it will be the last time, I asked for a updated official diagnosis of Fibromyalgia and he said he would not declare me disabled. I looked him in the eye and said I did not ask you for that. I asked him did he not give me a diagnosis of not Lupus but instead Fibromyalgia? He said that was correct. That’s all I need from you I told him. It took many years and many Drs appointments to get disability only to find it’s not the wonderful answer to everything that I worked so hard for. As my friend likes to say: Being poor may not be a crime but it’s damned inconvenient!
