So who am I? I’m Arthritic Chick! I’m a 43 year old ex-web developer and single mother of two. Eight years ago my hands started to hurt, then my feet, then my knees, hips, shoulders, elbows…until almost every joint in my body ached. Even my ribs. Who’d have thought that ribs were joints, eh???
I tried to ignore it for as long as I could, after all life was good! I had just gone back to work as a web developer after taking a few years out to raise my kids. Now that they were both at school I was looking forward to earning money to take the pressure off my husband, a return to professional life and being able to afford some luxuries again. But my hands just started to hurt so darn much…I couldn’t get through a whole day of work. Pretty soon I could barely get out of bed.
My GP diagnosed Rheumatoid Arthritis immediately and started me on treatment. I didn’t believe him, of course.
Trip to rheumatologist (after waiting nearly a six months for an appointment – why aren’t there enough rheumies in the world???) who tested me for everything under the sun…Lupus, MS, RA, multiple myeloma, lymphoma, leukemia, all kinds of cancer…very scarey time. Everything came back more or less OK .
A few autoimmune markers…positive ANA, positive anti-CCP. Negative RF. Kidney function not great. Strange rash on my face that would come and go. Sore, crazy dry eyes and mouth…but negative anti-SSA/RO antibodies. Raynaud’s phenomenon. Symmetrical bilateral arthritis…very painful, but non-erosive. A bone scan showing synovitis in my hands and feet…..AND hips and shoulders. Small joints affected, large joints affected. So…Mixed Connective Tissue Disease!
Ha! Told you I didn’t have RA!
Oh wait…Mixed Connective Tissue disease is a combination of several autoimmune disease diseases, including Rheumatoid Arthritis. Bummer. I meet the diagnostic criteria of Rheumatoid Arthritis, and so I tend to focus on that. I also have Raynaud’s phenomenon and my symptoms overlap with Lupus and Sjogren’s Syndrome.
Ok, good. Diagnosis!!! Reason for all this pain. Yay! Now that we know what’s going on, let’s get started on making it go away!
Then I googled. Wait…Not Yay.. Definately. Not. Yay.
No cure? What do you mean, no CURE??? Can’t medicine cure everything? Er, no actually. Doctors are not God. Shame about that.
But there are treatments. Oh, OK. Good then. Gimme those!
Wait. Not so fast. They take time to work. Lots of time. And there are side effects. Some of them are quite unpleasant. E.g. one of the side effects of methotrexate…cancer. That’s a pretty severe side effect, as side effects go. Wait…let’s just start with the safer drugs… (Note: I now know that methotrexate is really a very safe, effective treatment. But I was a newbie then.)
So it began…I refused methotrexate at first. I refused to believe I was that sick. Denial. Possibly a very big mistake, but no use worrying about it now. So I went with sulfasalazine, plaquenil and celebrex. Then I swapped the celebrex for diclofenac, then mobic, then ibuprofen, then finally naprosyn. Which helped some.
Next was a tonne of prednisone – finally some relief! Along with it the realisation that all the doctors were right. I have moderate to severe rheumatoid arthritis and the denial had to end. So on to methotrexate, then Imuran, Arava, Enbrel, Humira…and a few more I’ve forgotten. In all kinds of combinations. Long journey.
And in the meantime, my RA has progressed. My husband is long gone and my career as well and truly over. I have never come anywhere near remission, and the pain has increased over the years. But I am lucky – I have very little joint damage, and no real visible deformities. The pain is constant and flares are even worse, but there are many, many people who are far worse off than me!
I live in hope of finding the magic combination of drugs and lifestyle that will make me whole again. In the meantime, I’m living the best life I can, with as much happiness and gratitude as I can.
One night when Arthritic Chick had painsomnia she learned to draw *Chibis. From left to right, the first is her angry chibi, next is her selfie chibi, then her hopeful chibi. She fell asleep around 5am.
*From Wikipedia: Chibi (?? or ???) is a Japanese slang word meaning “short person” or “small child”. The word has gained currency among fans of manga and anime. Its meaning is of someone or some animal that is small. It can be translated as “little”, but is not used the same way as chiisana [???] (tiny, small, little in Japanese) but rather cute.