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.


2 Responses to New Drugs, New Doctor, New Blues

  • Wayney says:

    As a kid, even when I did eat calorie-laden foods, I couldn’t keep weight on. I was considered underweight for much of my childhood. I could out eat my 2 best friends combined and I was also known to be able to eat more than my Mom and then BF. Now, it was only when I wasn’t in a flare that I could do that. During a flare, it was hard for me to even force myself to eat toast. For some reason I would eat toast when it had a combo of peanut butter and Cheez Whiz, a combo I still like when flaring. It’s not so odd really as people eat pb on cheese crackers!

    It wasn’t until after high school and getting married and starting Depo-Provera that I was over 100lbs. Which for my 5’3″ thin boned frame is still kinda low. Each time I got the Depo-Provera I gained a bit of weight and finally got to 115lbs which is where I felt less joint strain because of weight. I still looked ill and underweight. It wasn’t until I hit about 120-125lbs that people said I looked like I was a healthy even. But unfortunately (in some ways) I started seeing a rheumy again and started pred as well as other meds. I went from the healthy looking 120 to 198lbs over the course of a few years. Yet, my appetite was worse than ever. I literally was forcing myself to eat. And because at the time I couldn’t swallow pills, I was eating a few tablespoons of yogurt or pudding 4-6 times a day and some days, that’s all I’d eat.

    When I got deathly ill (Jan 2009)and spent 11 mo in the hosp. with the first 4 mo where I was really out of it and don’t remember anything, I went from that 198 which was awful to between 90 and 95lbs. They used NG tubes to give me nutrients, they put in a feeding tube and it came out, then they put in a second feeding tube and it stayed in. Shortly after that I actually got my appetite back to a small extent. I left the hosp and went to a nursing home in Nov 2009 and had gotten up to 112lbs the day I checked into the nursing home. My weight bounced up and down by 5-10lbs a month which is normal for me. One month I lost 10lbs and that triggered a weekly weigh in. Which was a waste of time as I told them I’d been in a major flare and it’d been broken by use of a shot of Decadron and that in the next weeks my weight would bounce back. And I was right, it did. And then we put me back on daily pred because it was getting to be a monthly thing with getting a systemic shot. And after that, my weight climbed slowly but steadily. I was around 155 or so when I left there in Nov. I was getting some more exercise than I am now with an hr of PT 4 days a week which was part of learning to walk again since when I got sick I’d fallen and was unable to walk or stand even and it just worsened because of joint contractures that occurred when I was in the hosp. So the PT was one way of forcing me to be active. And since I’ve left the nursing home in Nov 2011, and am not in PT, I have steadily gained weight despite not eating much and being in a constant flare since about Feb. That’s one thing about the nursing home, I’d have long had a systemic shot before now. I am considering calling my NP who does my rheumy care even though I don’t have an appt until Sept.

    But, my point in sharing all of that is I was always underweight growing up and my docs told my Mom it was an effect of JRA flares. You’re fighting the flare and your desire for food is not there because your body is just too occupied with the flare. It’s weird, you’d think your body is fighting a flare and would need the energy to do so and would increase your desire to eat. But he said it was very common for flares to cause weight loss. You’d also think since flares cause less movement, you’d gain from not being active.

  • Pingback: Tanya's new rheumatologist, Dr. Mariko Ishimori, MD | Got baddog Photos and Videos

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Faces of Juicing Book
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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