This is not a negative post. I had a tiny breakdown today, it happens every now and again. Living with Rheumatoid Arthritis is a roller coaster ride. Ignore the commercials you see for Biologic medications and treating RA. Pharmaceutical companies want a more upbeat approach in regards to RA and want you to believe the disease is just a nuisance. Their treatments have been referred to as "pain relievers". This doesn't help to promote awareness for a more concrete understanding of RA and it doesn't help to establish proper medical care for patients that are often presumed to be weak or malingering. The word 'arthritis' in RA throws everyone off and doctors and patients have called it an "identity crisis" for RA. For the real people with rheumatoid disease (PRD), only 6% experience remission and a majority experience limited or no response (about one-third are non-responders and nearly 30% have only 20% improvement). RA doesn't start in the joints, it really starts in the blood. RA is actually a systemic inflammatory disease that attacks primarily, but not solely, the joints. It is an incurable disease that is similar to Type 1 diabetes in that the disease can damage many different bodily systems. PRD are twice as likely to experience unrecognized heart attacks and sudden cardiac death that is unrelated to traditional heart disease risk factors. Poorly functioning PRD have a survival rate comparable to stage IV Hodgkin's disease and three-vessel coronary artery disease.
Those are the facts, I'm not trying to be a downer. It's real and it can be frightening and I'm tired of fighting the pain and most of all I don't want to fight this dragon alone anymore. No one gets it. I'm exhausted of having to explain RA (RD) daily and people brushing it off. I'm exhausted with playing doctor. Often times my doctor dismisses new occurring symptoms and joints (among other things) are being neglected. PRD need and deserve quality comprehensive care along with preventative care.
My thyroid is going crazy and the term my doctor gave me is "thyroid storm" and it happens when your thyroid suddenly releases large amounts of thyroid hormones in a short period of time and is potentially life-threatening. My immune system is now attacking my thyroid as well as my joints. Almost everyday last week I was getting radio active iodine scans and ultrasounds to see if one of the nodules was malignant. I got the good news Monday that it was benign. I spent the last two weeks thinking of the possibility of having thyroid cancer. I was scared and I still am a little scared of what other complications of RA will come up and what will my immune system will attack next, but I try and not think of those things often. My doctor put me on beta-blockers for my heart and thyroid medication to stop the thyrotoxicosis, and the thyroid nodule has the possibility of becoming malignant in the future so surgery is recommended.
My c-reactive protein (inflammation) is elevated (standard range is 0.00-0.30 and mine is 1.80). I'm concerned that the inflammation is not only occurring in my joints. I'm not responding to my current RD treatment and my doctor gave me a list of medications to choose from. I have to play doctor (with no medical degree) and try and decide from the information that I have researched to medicate myself. One particular medication has a risk of brain infection and others heart failure. How do I choose when they all seem to have the same amount of success rates? Do I toss a coin? Trial and error seems like my only option. I wish there were more ways my doctor would measure disease activity to determine the course of my treatment. Why isn't he taking it seriously and treating this aggressively? More questions for my next appointment.
I stay positive everyday by smiling through the tears. I get out of bed every morning despite the sharp, razor blade-like pain. My bathroom is only a few feet away, but most days it takes me several minutes to get there (and almost falling on my face) because it feels like there are ice picks jabbing me in my hips and ankles. The voice in my head always tells me "it can always be worse" and so, thank goodness I have a strong bladder!
I also stay positive by finding humor in RD pain.
I've always been too proud to ask for help, but the truth is I need help more and more these days. The disease is progressing and I don't want to fight alone anymore. Fighting a war is much easier with a companion on your side.
In the meantime I want to thank my friends and family for being patient with me and listening even though you might not understand. Your love and support helps keep me strong and resilient.
Hugs.
Post blog: Enduring the physical and emotional pain of RA (RD) alone can be daunting. I'm happy to report that after this blog post, my warmhearted aunt Cindy took off of work and joined me at my next appointment with my Rheumatologist. I'm very grateful she was by my side and took notes for me. Her calming presence and positive vibes made all the difference.
I'm also grateful for my good friend David. He listens and doesn't change topics when I'm discussing RD and most importantly he doesn't judge. He is genuinely curious and asks questions about what's going on with me and is kind and offers to help. He keeps me company on days I can't go out of the house and keeps me smiling and laughing. What more can you ask for in a friendship?
My good friend Eric knows the good, bad and ugly of RD and has seen the tears. Even though he lives in Boston he always makes sure to call often and see how things are going. I don't always feel like talking on the phone, but he's very understanding and patient. He makes me laugh and always looks at the bright side of things. He is able to perceive my hardships because he has also endured heartache and suffering.
Last, but definitely not least, I'm grateful that I have my mother's support. I don't fake my pain around her and she is the only one that knows me inside and out. I don't ever have to explain anything to her, she can tell how I'm feeling just by the sound of my voice or a twitch in my face and is always immediately by my side to comfort me or massage the pain away. Her love overflows in abundance and eases my worries and fears. She puts me on my feet again.
I feel the love and it feels good.
