Erin

RA Guy Real Profiles of RA

real-profile-erin

Photos © Erin

Name?

Erin

Age?

39

Location?

Saskatoon, Saskatchewan, Canada

How long have you lived with RA?

I was diagnosed with RA in my 20s, but previous to that I’d had a lifetime of joint problems. I was initially diagnosed at age 5 with scoliosis and hip dysplasia, then mild spina bifida. At age 14, I was diagnosed with Ankylosing Spondylitis; I have since added a diagnosis of RA and chronic soft tissue pain.

What advice would you give to someone who has just been diagnosed with RA?

Learn everything you can about RA – but take what fits for you and leave the rest. Connect with others who are living with RA, especially people with whom you have other things in common (like your age, interests, etc.). The interweb is amazing for that!

Do you use any mobility aids?

I’ve used a cane periodically, but since my arthritis impacts both hips, both knees, my back, and my arms, it can be tough to use a cane or crutches. I had one flare up in my 20s that resulted in my using a wheelchair, and now occasionally (and a LOT begrudgingly – I still struggle with this) use a chair for special events. We’ve also recently moved to from a 2-story house a bungalow, and have added an accessible en suite bathroom to that house, which has helped maintain what mobility I still have. Getting an accessible parking placard has also been a huge help – although with a mostly invisible disability, I do occasionally get nasty looks and comments about using accessible parking spots. I’ve gradually learned to prioritize my health and comfort over what other people think… I’m trying to, anyway 😉

How has living with RA helped to improve your life?

I’ve learned that it’s okay to need help, and to ask for it. I’ve also become a fair bit more gentle with myself – I have pretty strong perfectionist tendencies, so giving myself (or my work, or my house) permission to be imperfect has been HUGE for me. I’m also reaching a point where all the “stuff” in my house is taking too much time and energy to maintain and manage, so I’m flirting with paring WAY down and really looking at what I actually need in terms of material possessions and living space. Big house = lots of upkeep = lots of room for stuff to accumulate. When you’ve got a chronic illness, you are ultimately forced to look at life differently and really consider what you want to put your energy into.

Do you have any visible signs of RA?

Unless I’m using a cane or am in a wheelchair, I actually don’t. I am “but you don’t look sick” personified! Sometimes I have to walk really slowly and/or have a limp, but that’s about it. I do have several surgery scars, but they’re all small as I’ve been fortunate enough to only have laparoscopic procedures so far.

Can you please describe some of your favorite coping strategies for living with RA?

I’m a social worker/counsellor, so I try to treat myself the way I do the people I support in my work. If I wouldn’t say or think something about a client and the way they’re handling their situation, why should I think that way about myself? Leaning into (rather than isolating myself from) my partner – that’s been a tough thing to work through, as my tendency is to suffer in silence. And yoga – I’ve recently discovered an aqua yoga class, and it is phenomenal for my emotional, physical, and spiritual wellbeing. I actually switched jobs and took a pay cut so I could work in the same building as my gym and pool. I also have a psychologist whose practice focuses on people with chronic illnesses – she’s an employee of our local health region, so I can see her on a regular/extended basis and it doesn’t cost me anything. Spending time with my dog is a great way of dealing with emotional stress, too – she’s a great support and seems to know when I’m struggling. Now if we could only get her trained to not “tromp” on me when I’m hurting…

Can you please describe your current medical (traditional and alternative) treatments?

I’ve mowed through almost all of the NSAIDs, DMARDs and related meds, and have the stomach issues to show it. In recent years, it’s been all about the biologics – I’m currently on Humira, along with occasional cortisone injections into multiple joints, for my RA. A few years back, Remicade put me in remission but my veins were shot so we had to switch to an injectable rather than an IV infusion. I’m so fortunate that my partner is willing and able to do my injections for me as I have a pretty wicked needle phobia. I’ve also tried methotrexate (I reacted really badly to it – nausea, hair loss, the whole nine yards, even as an injection – so I avoid it now. For the past 4 1/2 years, I have been on opioids (T3s, T4s, oxycodone, and most recently hydromorphone) for my chronic pain but recently had to completely discontinue them as I was having chronic migraines and it was determined that the pain meds were partially to blame (not to mention the brutal side effects and reduction of quality of life associated with long term opiate use). Now I’m on medical marijuana for pain, and it seems to be working with minimal side effects.

Is there anything else about yourself that you would like to share?

I like books (a lot), adore my nieces and nephews, love to travel and explore, and am very proud of the vintage camper we restored (even if we aren’t able to camp as much as we used to – damn uncomfortable camper bed!). I’m someone who loves to take the lead in almost anything, and loves being in control. I’ve fought against “accepting” my health conditions, and all that came with them, for many years. When I was younger, I was able to manage over doing things and could recover relatively quickly. As I’ve aged and my symptoms have become more severe, pacing myself has been very important and I’m still figuring out how much is too much, what activities are worth pushing myself for, how to stay connected to people, communities, and issues I’m passionate about, and how to rest and let others take care of things. I still struggle as I grieve the things I used to do but can’t anymore, things I had hoped to do someday, the kind of life I wanted, the kind of work I’d hoped to do, the house I loved but had to sell because I could no longer get around in it, and many, many other “little” things. Coming to terms with living with a chronic illness is a process, and every day I find I’m facing a new piece of that. But it can get better – it can even be really great at times!