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
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.