Does Remission Really Exist?
The holy grail of chronic illness and a personal quest for truth. Those of you with a disease that goes into “remission” while still being ACTIVE, this is for you.
When I was first diagnosed with RA I was seeing this rheumatologist who listened to only half the symptoms and sentences that came out of my mouth. He ignored the sores, hair thinning, fatigue and other issues and focused only on the joint pain. I had no idea that Rheuamtoid Arthritis was anything more than “Oh, so I take this Meloxicam (basically stronger Aleve) and my joints will stop hurting” because this doctor said absolutely nothing about what this disease really was. I took it as another hurdle that I thought I would “get over” like I have so many other health-related ones. If you know me in person you know that when it comes to my health and history, I’m a freaking warrior woman.
I’d already been through the ringer with my health with my Scoliosis and spine issues and surgeries since I was ten. Needles and medications, surgeries and weird anomalies that affect only a small percentage of the population? A year of crippling migraines that no one could explain? Kidney issues that plagued me for a year? This new diagnosis was just another box checked off next to “statistical anomaly starting at birth;” it didn’t phase me emotionally like it might someone else— it was already part of my life.
Once the doctor started ignoring rashes and said to take prednisone despite the risks to my heart, I sought out a new one. My mum didn’t believe that without a Rheumatoid Factor showing up on my blood work that I could actually be sick. At first I was angry that there was this disbelief (there had been for about a year and then some— no one ever put things together). Later I realized it was probably my mother’s way of denying and mourning the fact that her daughter would go through another health issue— one that might not go away. She still maintains this golden remission idea— that I will for sure reach this high point of remission and never deal with the RA again. I think facing the idea of not reaching remission (most people see to associate remission with “cured” and that’s not correct) is too difficult for her to cope with or consider. I don’t blame her.
At first I felt that way too, but when I sit here struggling to type without pain, exhausted but too uncomfortable to sleep, while my hair things and I get sores in my mouth, rashes on my arms, neuropathy from nerve impingement from swollen joints, have difficulty taking deep breaths because the cartilage between my ribs is inflamed, and with swollen glands and a current fever of 102 (the symptoms don’t end there)… the idea of remission by April seems like an impossibility.
So far the DMARDS I’ve tried have either triggered migraines or not worked adequately. Plaquenil masked the swelling so it’s not as apparent, but nothing more. Methotrexate made me want to stop existing— literally. Some people got over the “Methotrexate hangover” in a day; it took me four minimum and two of which were spent in the dark hiding from migraines. I’m on Leflumonide (Arava) now for the second time (stopped intermittently to have surgery). The first time I noticed changes in just two weeks; this time it’s hardly working at all.
Of course the goal of treatment is remission, but is it reasonable to hold onto high hopes of reaching remission? Or is it false hope? I try not to think about remission. There’s no set time stamp to expect it by so I focus on taking each day at a time. Remission seems light years away, if not completely unattainable. But then if I think about the thought of living the rest of my life like this, it’s up to me to make my life worth the suffering this illness (and subsequent others) costs me.
I see my rheumatologist soon and will go there with an entire sheet of concerns and questions. Do I up my DMARD? What happens if it continues to not work the way it should? Do we try another DMARD or move onto a biologic, like Remicade, for example? And then what? Is remission likely? What is remission, because what the Arthritis Association calls remission and the ACR’s definition of remission are seriously different. Why are we not monitoring my joints for damage? Why do my shoulders have crepitus (google it) and why am I losing mobility despite being on TWO meds for this disease? What’s up with my GYN suggesting Fibromyalgia and why isn’t it being brought up by you when it is with other doctors? Is this for SURE Stills’ Disease, and if it is then why is it also called Juvenile Rhuematoid Arthritis instead of Rheumatoid Arthritis? These names have absolutely no meaning whatsoever, but hold all the power of funding and how our disease(s) is perceived by others.
These diseases are no joke. They shorten lifespan considerably, maim and kill without cure and are currently without adequate treatment for many afflicted. The name does it no justice.
Remission might be the holy grain of chronic illness, but remission does not mean “cured.” Remission means controlled by medications and slowed disease progression: not stopped disease progression. It’s one hell of stretch to call THAT “remission.” You don’t tell a cancer patient they’re in remission if they’re still suffering from the disease ravaging their body. If you want some cold hard facts and the hard truth about remission, check out RA Warrior’s (google the site) articles on remission:
Right now I’d settle for a day off. I can barely make it out of bed the past few days. Dear immune system, give me a break please and thank you. It’s about damn time and I’m wearing thin today.
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