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.