Friday, July 15, 2016

Facing Forward: Kristen

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: Kristen
Location: Pittsburgh, PA
Diagnosis: Ankoloysing Spondylitis, Migraines, GERD and Chronic Dry Eye
Age at Diagnosis: AS at 31 (4 months after my second baby was born)

How are you currently treating your condition?
I'm still really struggling with treatment. I tried Enbrel first. Started Aug 2015 and just stopped a month ago. I was about 80% better but it wasn't covering my flares, so I was perpetually on prednisone. I'm two doses into Humira and quite frankly I'm doubtful it's going to work. I'm only at about 20% and back on prednisone.
What are the biggest challenges you have faced since your diagnosis?
The biggest challenge I have found so far is getting people to understand I don't feel well. My swollen joints don't look very swollen to everyone else and I'm good at hiding pain after years and years of migraine that weren't controlled very well. You get into this trap where you almost act worst than you feel just so people will believe you. It's messed up and I try not to fall into it because it doesn't matter. I know how I feel and I know that it doesn't have to define me. It's just hard some days.

What are your favorite tips and tricks for managing everyday tasks?
I use a rubber grippy thing to open jars (hands). I have a heating pad next to my bed and under my desk at work (hips, lower back). I try to take deep breaths often (to prevent rib fusion and ease the ache in my sternum). I sleep with a huge preggo pillow to try to pad what hurts the most trying to sleep. I don't lay on the floor anymore but invite the kids up to the couch with me instead. We Netflix more than I'd like when I need to nap. I don't hesitate to ask for prednisone when I can't keep up.

How do you manage to keep facing forward every day?
I try to make a list in my head of everything I'm grateful for when it's hard. Like that it's not cancer, I'm not dying, running water, HOT water, comfy bed, etc. There are so many good things in my life. I just have to see them.

If you could go back to diagnosis day and tell your past self one thing, what would it be?
Be patient. It won't be as bad as you think. Push when you know the answer is not right - my first Rheum said my MRI was fine, my second actually looked at the scans and started me on a biologic immediately.

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