When I was finally diagnosed with RA some changes were to be expected.
Feeling pain in one or more joints in my body, to varying degrees, on a 24/7 basis was not one of them.
Having to invest in Birkenstocks and other stable, responsible, less fashion-forward shoes without even the tiniest heel was not one of them. I am seriously considering a pair of Uggs…I can’t even.
Getting a hand cramp from holding a pen, or trying to use a Q-Tip, or trying to prepare a meal was not one of them.
Limiting my solo shopping trips to 20 minutes and two light bags was not one of them.
Feeling constantly fatigued was not one of them.
Choosing between everyday tasks like cooking vs. washing the dishes or laundry vs. cleaning the bathroom was not one of them.
Dealing with unexpected physical changes from RA and drug side effects – everything from swollen feet to dry eyes – was not one of them.
Spending 10% of my monthly income at the pharmacy was not one of them.
I could keep going but I think you get the point. In 11 months my whole life has changed.
I realise that in some ways I’m lucky. I have a job with health insurance. I live in Ontario so I have access to health care
and I’ve been accepted into the Trillium program to help with my drug costs. My GP, rheumatologist, therapist and soon to be dietitian are supportive and helpful. I went from anti-inflammatories to biologics in 9 months. On paper, I’ve received some of the best care.
But even with about $2000 worth of drugs going into my body a month I don’t feel well. I don’t feel like myself anymore.
I have symptoms of carpal tunnel syndrome from having inflammation in my hands and wrists so long.
I still need to take pain medication to make it through most days with only minimal discomfort.
I’ve gone back to ice packs and heating pads. I had a few weeks of relief after I started Enbrel but I don’t know how well
it’s still working.
I’m trying to push myself so I can have some semblance of normal again. I’m trying to not give in but sometimes I’m just
so worn down by it all.
Back in May, I started seeing my therapist again to help me deal with my rape and when I saw her two weeks ago she had to ask me how I was dealing with “that”. The truth is most days, just living, just going to work and making it home again takes everything I’ve got so dealing with my feelings about anything else just doesn’t matter much.
That’s how consuming having a chronic illness can be.