I’ve always prided myself on being a very independent person. As a hair salon owner, my body and hands were my livelihood. My life was taken up by work, the gym, hockey, and going out to my favorite watering hole. I’ve always been one to fly by the seat of my pants when it comes to events like dinner parties or concerts. I would come and go as I pleased, and I never really stopped until about 2009.
I noticed that cutting hair and standing for hours at a time became hard to do and painful. Eventually, I stopped working completely. I tried to do other work, thinking perhaps I needed a change (even though my passion for hair styling began when I was 13). But I just couldn’t physically do it.
I began to feel ashamed of myself, and that created a domino effect. I focused more and more on the pain, the stiffness, and my inability to function the way I wanted to. I was about to learn more about this illness that I wasn’t prepared for.
In 2010, I was diagnosed with RA. I wasn’t prepared for such a huge change in my life, and while I eventually became used to the pain and stiffness, there were many other things about living with RA that I would have to learn along the way. These are nine aspects of my life that I was not prepared for RA to have an impact on.
1. My career
Being a hairdresser is something I believe I was born to do, but I haven’t been able to do it for the past seven years. The pain and lack of grip in my hands make it impossible for me to hold onto any hair tools. Leaving it behind was the toughest decision I ever had to make. RA has ruined my career. It’s astonishing to think that I had started my own business by the age of 20, but it’s also depressing that I had to retire at the age of 34. You can still catch me in my bathroom with my sheers, “trimming” bits and pieces of my own hair. Sometimes I’ll be at my dad’s and he’ll catch me shaping their miniature Schnauzer’s facial hair. The worst thing I ever did was when I got caught shaving my cat Shiva in the kitchen sink. I can laugh at these moments, now.
2. My social life
To say I was the life of the party would be an understatement. I would go to a bar and end up singing to my favorite song even if it wasn’t karaoke night. Now, you can find me in my pajamas on the couch. I just can’t last out there like I used to. Between the pain and the fatigue, I honestly just want to go home and lay down after 20 minutes of anything. RA has amped up my anxiety, too. I’ll go somewhere and I’m the only one not drinking. I don’t like to fake it; if I don’t feel good, you’re going to look at my face and know it.
3. My independence
How does one go from making money and being able to open a can of Sprite Zero to being disabled and having to wait until the husband comes home to open it for you? It’s insane to think about. I’ve laid down carpet, painted walls, even rewired electricity with my dad without getting zapped (well, there was that one time). Now, I live my life dependent on others to drive me places and even cut my BBQ chicken for me. Granted, it’s nice having people drive me places, because they can remember where we are going. RA sometimes also robs my brain of memory. Like, there was this one time … uh … what was I talking about again?
4. My ability to predict the weather
I should have been a meteorologist. No, really! My joints can predict the weather. I know when it’s going to rain by the swelling in my hands and the uncontrollable ache in my whole body. My body begins to feel like I’ve been run over by a train. I get all flushed in my face and begin to experience headaches, which start at the base of my skull and are most likely caused by the inflammation and degeneration in my neck. The boney protrusions I have in various places begin to show their shape even more. It’s like an abstract art show, but for RA. Although there is nothing beautiful about this disease, once you know the symptoms you can react accordingly.
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5. My fashion sense
Most people who see me at the gym, or at the doctor, probably ask themselves, “Is it Groundhog Day or was she wearing that same outfit the last time I saw her?” My RA makes my joints unstable, so you’ll often see me wearing my Sabres shirt with my favorite pink sweater and these stretchy jeans that I bought at Target. I wear the easiest thing to pull on and off without aggravating my shoulders or hips. While I like to think I look cute no matter what I’m wearing, my fashion has really taken a back seat since I’ve gotten sick. I’ve also had to cut off my hair, because I can’t put my arms over my head to wash my hair or style it. Most days, I just put on a hat and say, “Eh, that’s good enough.”
6. My memory
Everyone experiences a bit of forgetfulness, but I have moments of full-on memory loss. My kitchen is covered in calendars, reminders of appointments, and notes about what time I last fed the dogs and even if they pooped this morning. I honestly don’t remember what I did yesterday, but I can remember my fifth birthday party. Strange but true. I never believed that RA could mess with your brain; I thought perhaps it could be the medication, but I’ve also experienced this memory loss when not taking anything. I’ve found ways to overcome brain fog by being patient with myself.
7. My feet
Size 8 shoes, size 10 toes! No, it’s true. My toes have each gone in a direction of their own. I guess you could call them hammer toes, because they feel like someone’s used a hammer on them. Ouch! Buying shoes is interesting. I have to make sure there’s enough room for my toes, but also account for how narrow my feet are. I feel like I should be wearing clown shoes. Doctors mention the words “orthopedic” and “shoes” in the same sentence, but I don’t think I’m quite ready for all that. In the meantime, I’ll just try to stretch out the toe box of my shoes since my toes have decided to take over my feet!
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8. My ability to breathe
I don’t smoke, but there are days when I sure feel like I do. My RA affects my lungs. When I’m exercising or walking up the stairs, I get beyond winded. I feel like there’s an elephant on my chest. It’s exhausting and unpredictable. Some days are better than others, and I can’t exactly predict by the weather or surrounding factors — it just happens. Often I’ll get achy in my chest — they call it costochondritis.
9. My ability to cope with stress
Needless to say, with everything going on with my body, stress is a big part of my life. Most of the time I can put myself on autopilot and deal, but there are those days where I just hit a brick wall. Not being able to fix myself and return to my old life is something that frustrates me. Not being able to go back to work and have a conversation with a human being instead of the conversations I have with my dogs or even myself is something I crave. I feel like I’m coping with a loss — the loss of my former life. I do quirky things now and then to make myself laugh, like wearing pig tails to the gym with a bright yellow shirt. My sarcasm is another way I deal with stress. I find ways to laugh at things that we’d otherwise stress about.
RA has changed my life. I’ve had to abandon my career and my social life. But I’ve also been able to find new things I’m good at. I’ve been able to find ways to laugh, love, and accept. During the time it took me to write this, I’ve lost my bottle of water, my medicine alarm has been going off for half an hour, and my dogs have managed to chew half of the white clip I thought was in my hair. Through the chaos, I learn new ways to cope and be happy, alleviate my pain, and try to help others manage their way through this mysterious disease called RA.
Gina Mara was diagnosed with RA in 2010. She enjoys hockey and is a contributor to CreakyJoints. Connect with her on Twitter @ginasabres.