Friday, February 19, 2016

Facing Forward: Kristin Joy

Facing Forward is a series that shares the lives of people living with arthritis and other invisible chronic illnesses. The goal of the series is to see how we are similar and how we are different - and to remind us to keep moving forward because we aren't alone!

Name: Kristin Joy
Location: Va Beach, VA
Diagnosis: Rheumatoid Arthritis, Hypothyroidism, Celiac's Disease, and Degenerative Disc Disease in my neck
Age at Diagnosis: RA at 27; other diagnoses at 43

How are you currently treating your condition?
As far as RA treatments go, I've been through a few over the last 16 years (Enbrel, Methotrexate, Simponi, Xeljanz). Right now we're trying Actemra injections along with Arava. Regardless of the number of injections I've given myself or how often I have my labs drawn, I still don't like needles!

Epson salt has become a staple in my house. Massage therapy also helps with inflammation and flares. It's one of my favorite places. That is where I discovered Biofreeze gel. It's amazing! My Tommy Copper fingerless gloves are also a must. I wear them almost all the time, especially to bed. They help with morning stiffness (the claw) and have rubber strips across the plans to help me hold on to things. Everybody in my family knows I'm a "dropper."
What are the biggest challenges you have faced since your diagnosis?
The biggest challenge I've faced with having chronic illnesses is finding a balance that's right for me. Not based on what others think I should or shouldn't be doing - but what I feel is the right thing for me. I try to prioritize my activities and include rest breaks when needed. I'm not shy about saying that I need a break.

What are your favorite tips and tricks for managing everyday tasks?
If there is something I know I shouldn't or can't do, asking for help is important. I love to cook but a lot of the prep work is too much. My mom will chop the veggies the night before or set out heavy pans so I don't have to lift them. I also try to store my things where it's easy for me to get them. Since I have Celiac's and often require different food than my family anyway, I have my own shelf in the fridge that's easty to reach. Convenience appliances are awesome too. My stand mixer does everything from beat eggs to mash potatoes.

How do you manage to keep facing forward every day?
The things that help me keep facing forward are my faith, my family, and my animals. I'm in an online group through church that includes others who have chronic illnesses. It's important to have people in your life who can relate. I get a lot of help from my parents. I know without them my life would be much more limited. And my pets, a big yellow dog named Payten and a bunny named E.B. They love me no matter what, so struggling to care for them is worth it. On bad days they are also the reason I get out of bed.

I have also learned to take things one day at a time. Tomorrow has its own troubles. That took some time to get used to. I like to say I am a control enthusiast. Sounds better than control freak.

If you could go back to diagnosis day and tell your past self one thing, what would it be?
If I could go back to diagnosis day and tell myself something, it would be don't get so focused on what others think or say. There was a time that I was actually embarrassed to tell people I had RA. I think it was because "arthritis" is often associated with the elderly. And then there are the lovely comments, "You don't look sick!" or "Can't you just take some Tylenol for that?" I remember early on, sitting in my rheumatologist's office, getting dirty looks because I wouldn't give my seat to an older lady who was in much better shape than I was on that day. I've come to realize that there will always be people, no matter what the issue is, who will judge or say dumb things. And I guess that's their right. But, going forward and through advocacy, I hope to make people more aware of RA and its effects on those dealing with the disease.

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