insurance

New Drugs, New Doctor, New Blues

graphic image of Rheumatoid Arthritis Sucks

Pretty much says it all. RA Sucks!

This week I have felt a little blah a few times.  I am working on filling out paperwork for the new doctor as well as gathering all the documents, test reports and history for my appointment tomorrow. I know I have rheumatoid arthritis, I know I will continue to deal with pain, doctors, tests, fatigue, weight loss and everything else that comes with dealing with this disease for the rest of my life. I hope for “remission” from this roller coaster ride but it seems to be stuck on a never ending track. It has been almost 2 years since it was clear to me that I was no longer in remission and it took over 3 years to get in remission the first time around. It is hard to continue to have hope at times.

I guess I am just missing the remission time I had, the type of remission that most do not get (see Why say a patient #FAILS treatment when RA treatments fail patients?). But I still hope, hope for that morning I wake up and feel no stiffness, fatigue or pain. I have had that happen before so I hope for it again. I started Cimzia hoping for less stiffness, but the Flexeril seems to be the thing helping the most at this point and I still feel some stiffness throughout the night and in the morning, it feels like I have “sticky” joints. I have noticed a few good days and less swelling in my lymph nodes, so there is still some hope. I have been sleeping a little better since I started on Flexeril (see Art of Sleeping with RA).

I feel a little blue when I want to exercise the way I did while in “remission”, I miss it so much. It is hard at times to see posts on social networks about running or working out. I miss the way it made me feel happier after exercising. Right now I walk at night with Lloyd and the dogs. I could walk more and try to lose weight like my last doctor suggested to me, but to me the weight loss that happens with this disease at times is scary. I felt warm a few times this week, so I stepped on the scale this morning. I lost 4 lbs, I do not know why because I have had a few Starbucks and chocolate and desserts. I have dropped 20 pounds in 2 weeks and over 40 pounds in 2 months during bad flares; I would rather have the extra 20-25 pounds on me to lose or be in remission and be able to work it off.

I am not really looking forward to the appointment tomorrow with the new doctor. I get a 1 hour appointment to give her 8 years of history with the disease. I know I can see her until the end of October, then I hope to have health insurance so I can continue to see her.

 

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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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