Louder

Living with a Disease and Choices

Sometimes there is so much I feel needs to be expressed about living with Rheumatoid Arthritis and making choices with this disease. My experiences with Rheumatoid Arthritis is long, since the 1980′s when my mother was dealing with it, seeing my sisters deal with it and reading other patient’s blogs, messages and social posts on how they are living with it. It is not at all easy; it is a very hard path to be on. The choices of drugs are hard, the choices of what you eat are hard, to stand or sit, can you do either? Will I be able to lay flat tonight or will I be able to sleep sitting up? Will tonight be a night where I cannot do either but are to weak not too sit and now have to deal with the pressure building in my head from my shoulders and neck being so weak. Going to doctors that claim the disease does not kill you or doctors that are confused on why you would have pain in that part of your body, there are no synovial lining there! Really?

My older sister still goes to the doctor I was seeing for the first 7 years of this disease and he is a lurker (doesn’t really post but follows social/blogs). She said he wondered if the doctor I was upset about was him, it wasn’t. I feel really lucky to have that curious doctor in my life. He gave me what I needed; a doctor that listens, discusses and gives you your options as well as tries to get a better understanding of what his patients go through. A doctor that does not follow just what the tests show or what is said in the text books. I know from many discussions with him that he has changed his practice over time as he learned how to treat his patients better. It is a rare doctor to find, it is the kind of doctor that patients have the right to fight to have. The ones that listen, discuss, are willing to learn and change. The ones that consider each patients needs and understand how different each patient’s needs may be.

At one point in my life it was my son that was so very sick. He was losing his hair and the doctor diagnosed him with Alopecia. As a mother I frantically researched as much as I could about Alopecia, but the symptoms did not fully match. Off to another doctor who claimed the same and gave me the look that I was crazy because the blood tests are fine. Then another doctor who just said the same thing. Then trying to get into another doctor who wanted to wait three months to see him and finding myself screaming on the phone that you can’t make him wait three months. My son is white as a ghost with strong dark circles around his eyes, he is barely awake during the day and when he is awake he is screaming that his stomach hurt or his legs have cramps. The receptionist says Alopecia causes hair loss, no big deal, he can wait three months. REALLY!! None of these symptoms are listed for Alopecia; none of these doctors are listening to all the symptoms. I must just be crazy right? Continue reading

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Biotinidase Deficiency Not RA

Diagnosed with Rheumatoid Arthritis in Dec 2003 because of joint pain and fatigue. Found out on July 19, 2013 that I really was profoundly low on Vitamin B7 because of a rare disease called Biotinidase Deficiency. When I found out I was very weak, hardly could get out of bed, could not turn my head without getting light headed, dragging my feet when I tried to walk, struggled to breath daily for years and was having many many other issues. From the first 24 hours of taking Biotin my symptoms started to disappear and my body started getting stronger again.

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