Unhappy 15th Anniversary this week to Arthur officially joining my world! In retrospect I had problems before the gob-stopping onset during the last week of August when I was 34, but the really debilitating event that led to a diagnosis reared up then. I'd had a great summer -- that included a trip to London on my own with miles upon miles of walking. Within days of returning, something went wrong and both ankles swelled up with a bumpy rash all over my legs. Erythema Nodosum, they called it. They put me on ibuprofen for pain which caused bleeding and both ankles and feet turned into a bruised mess. It was brutally painful to stand and walk. I had air casts on both ankles as I started the new school year, getting up on ladders to do bulletin boards and feeling so unsteady. I remember coming home from the first doctor's appointment going up the hilly walkway and flight of stairs to my apartment on my bum rather than walk due to pain. Both ankles not very weight bearing. Think Christina's World (kidding, I know it isn't that bad, but the pose felt similar.) It was a horror show. How do you use crutches when you can't put weight on either foot? That recommendation always made me curious. My then husband was in Turkey with his family, so I was really on my own. Me and my two cats in a small upstairs apartment. So grateful they were there!
Then there was the referral to a rheumatologist, who tried out a variety of nsaids to curb pain but not treat any underlying disease. Finally when the problem stuck around long enough he tried the Devil's TicTac diagnostic method - Prednisone - and it cleared up within days. I felt like my old self again and got a much needed reprieve. Since the prednisone was not considered a reasonable long term treatment, this rheumatologist took me off it, put me on a very weak (and ineffective for me) RA drug called plaquenil, and said "to see a psychologist to deal with the effects of pain." I kid you not. I was horrified. He also didn't even tell me my diagnosis, instead my primary care doc did accidentally in a phone call. The rheumy then said "I didn't want to tell you as you are so young." WTH. I did my own research, and found a new rheumy, who immediately put me on a barrage of drugs. I still see her and we are doing our best to keep this mess under control. Seeing as the stats show that 50% of all RA peeps have to stop work within 10 years because of the pain and disease progression, I feel like I am winning. At least I tell myself that on bad days.
Amazing how pain tolerance changes over time. Over the past fifteen years what was debilitating pain has become almost a baseline. The sharp jabs and overall body ache that would put most people to bed has become the norm, almost forgettable when I am properly distracted. The fatigue is a different story, as when my battery drains there isn’t much I can do about it except rest and often sleep for a cycle or two. Arthur has its own rules. No, it isn’t cancer or a terminal disease. But it is a life changing horror of its own, often invisible, even to me. There are times where I get so angry at my own inability to keep up with what I have to do, to be thinner, to have energy. Then I realize that my body is devoting a lot of energy to hurting itself and this is normal, despite and because of medication, that has its own set of accompanying side effects. The extra weight that seems to come and go of its own volition is ugly and frustrating, and often I see it as a personal weakness than part of the disease, which it often is due to necessary prednisone use.
It is a car off the racetrack, a cow out of the barn. And it is physical, not mental, though mental strategies can help deal with the symptoms. Settling in to stitch, draw, and lose myself in an art process can really help. This is the gem I’ve come away with over the last fifteen ugly years, and I am hoping that through my teaching I can share this magic with others, whether they are in physical pain or not.
I hate to rant about Arthur on this page so much but feel it is part of me and my process. My production is low because of him, despite my active mind that wants to create so many more things. His is the context in which I have to live, work, and create. I have to accept his limitations, his attacks, his conditions, his schedule. I do not dwell on this scourge in my active daily life but when I get here to blog, it tends to come out. I leave it here to bear witness of sorts to the reality, I guess. I sit down to write and all this just pours out, a glimpse into what it is like to live with this icky thing. I know others have it much worse, and I hate to whine. But, this is my silly blog, and no one really needs to read it. Maybe if I make it concrete here I can ignore it the rest of the time,
So Unhappy Anniversary, Arthur. I thank you though for helping me see what is and isn’t important in my world, and teaching me about patience and resilience. And not being so severe that I am in a wheelchair, as could have happened. Whatever lies ahead, I am sure you will be my thoughtless companion for the ride. As long as I have my art, my pain meds, and my little fur and feather friends that keep teaching me what it means to be alive without all the mental effects of physical conditions, I’ll be okay, though. And the creative and wonderful kids I am fortunate enough to work with, come next Wednesday. Cheers!