Not one of them…

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.

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3 thoughts on “Not one of them…

  1. You know I saw some boots I might try at Reitmans of all places. They’re lace up (I know -not so good) but high,rubber at the bottom, fuzzy tops. They even come in pink. I need to get my boots out for show and tell. I like them – they go over my shoes and have velcro so super easy. I look like a woodsman.

    I am afraid that sensible shoes are something you are stuck with and I really hated it. Hard to look cool when the feet are uncool. I say distract them with your top half.

    You can get triangular things for your pens and pencils at Grand & Toy. They last forever.

    Did you ever try splints to immobilize your wrists to see if they will help the carpal tunnel? I know – that’s more money at the drug store.

    I hope you have a good rheumatologist. I met someone under 30 recently with really agressive RA – she says her rheumy (in Toronto area) is dynamite. Mine is too but he doesn’t take patients any more as far as I know. Anyway she has put together a support group. Mostly the people are older but thet are a very dynamic bunch

  2. I have my old lace up boots that actually still fit (thank goodness!) and I love them. Very warm. I really wish I could find a more fashionable pair to wear to work.

    The thing is lately, I don’t even feel like putting effort into the top half. I’ve become lazy and a little messy in how I look, just not feeling great about myself right now. I’m working on it thought.

    I have those and I love them but I still get the cramping. It sucks!

    I do use splints at work. I tend not to use them much at home because I don’t spend most of my time typing. I need to ask about ones to sleep in at night when I see my rheumy.

    My rheumy is pretty good. Our last appointment was “off” but every other time I’ve been really happy with her.

    I would love to find a support group. I’ve met a lot of people online, in real life, not so much.

    • You can refer yourself to the Arthritis Society in Toronto and make an appointment to see an OT. They make the splints and just charge for the cost of materials. I know of a group here. It is a mix of people, mostly older but the person who is really dynamic and put the group together is only 27 or so. They get together about every three weeks. If you DM me I could give you her email.

      They all met through the Arthritis Self Management program in toronto, or at the pain management course. You can sign up for them also. I just did a blog post on splints coincidently lol

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