I wonder what’s next…
No, I don’t imagine it’s something glorious and wonderful (my perfectly honed cynicism wouldn’t have it any other way). Truthfully, I’m terrified I’m going to fall down and break something at the rate I’m going.
So to update the war within my body – it has finally been confirmed – I have Rheumatoid Arthritis. Unfortunately, my levels of Anti-CCP indicate that I have an aggressive form of RA, meaning it needs to be treated more aggressively.
As my rheumatologist was explaining everything, I could hear her and I understood what she was saying but it was surreal. So in 45 minutes my entire regimen was changed. I was prescribed a stronger Disease Modifying Anti-Rheumatic Drug – methotrexate. I was also placed back on steroids to help control my inflammation, which has been getting progressively worse since I stopped taking them in April.
I had to buy one of those weekly pill cases with the AM and PM sides so I can organise myself.
Morning: steroids, medicine to protect my stomach against the irritation caused by the steroids, folic acid to replenish and enhance the effects of the methotrexate, calcium & vitamin D to reduce the effect of the steroids on my bones, and Omega 3.
Afternoon: anti-depressant (which was increased a month ago – it still might not be enough), and a second dose of steroids if I need them (I’ve needed them).
Friday night: a subcutaneous injection of the methotrexate (did I mention I’m not a fan a needles?!?!)
I how have a right wrist splint. I bought Birkenstocks to wear this summer instead of my pretty sandals. My nightly routine now involves ice packs to reduce the swelling in my joints and heating pads to help with stiff muscles.
My body is fighting itself – literally. RA is an auto-immune disease so I am trying to fight my body back. Some days I don’t think I’m going to win.
I know this sounds like I am throwing myself a pity-party or attention seeking but when you are in chronic pain it is impossible to forget for very long. In 5 months my body has completely changed and I no longer know what to expect.
There are a few unintended consequences of arthritis. Falling down or going over on my ankles. The increased inflammation makes my joints less stable so I’ve had to give up all shoes with a heel for the moment because it feels too much like taking my life in my hands. Standing to wash my dishes is draining. Carrying my laundry is painful. Even making my bed can be tiresome. I had to buy a jar open, a special can opener and a potato peeler just so I can get things done in the kitchen with less strain on my hands and joints. Things like that are hard. Just making changes you didn’t think you’d have to, coming up against limitations you’ve never had before.
Worst of all this is taking a toll on me mentally and emotionally. On my best days, depression is never far away but when moving is painful, when you are constantly exhausted, when you struggle just to make it through the simplest tasks of the day it wears you down. Sadly, this comes at a time I am looking to finally confront what happened to me last fall. All of that bundled together led to my depressive/anxiety-attack a few weeks ago, which saw me completely shut down. I haven’t experienced something like that in years.
Everything that has happened over the last few months reminds me how alone I really am sometimes. My support-system is a bare-bones operation most days consisting of two other people and then my team of medical professionals. And some days all I want is to curl up next to someone and be held.
The battle wages on…