Friday, April 22, 2016

Facing Forward: Jaime

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: Jaime
Location: St. Louis, MO (Go Cards!)
Diagnosis: Rheumatoid Arthritis
Age at Diagnosis: 32

How are you currently treating your condition?
So. Many. Meds. I give myself an injection of Humira every other week and take methotrexate every week. Every day I take hydroxychloroquine, folic acid, and ibuprofen. For the particularly troublesome flares, I take prednisone or prednisolone.
What are the biggest challenges you have faced since your diagnosis?
By far my biggest challenge has been with acceptance. Accepting that life will always be at least a little different than it was before. Accepting that pain, weakness, and fatigue will always be a part of me. Accepting that my boys will never remember the pre-RA me (who I still consider to be the "real" me). Accepting that RA me is the real me. Accepting that I simply cannot do everything I used to do, and still want to do. Accepting that I have to draft much shorter daily to-do lists and allow myself the grace and patience when I don't even get the shorter list accomplished. Accepting that I can't just "power through." Accepting that my career path may end up looking different than I had previously envisioned. Accepting that sometimes I will miss that really fun social event regardless of how badly I want to go or how long it has been since I have seen those friends. Accepting that there is value in rest and taking care of myself. Accepting that I need help. Accepting that none of these changes really matter because I am still me and i still have an overabundance of blessings.

What are your favorite tips and tricks for managing everyday tasks?
Rest. Rest doesn't make my weakness or fatigue go away, but it does prevent them from taking over my day. Openness and honesty are also big ones. I have to be open and honest with myself, my family, and my employer/coworkers about how I am feeling, my current limitations, and whether I need help. I am incredibly fortunate in that I have found most everyone to be helpful and accommodating when they know what is going on. By delegating less important tasks, I am better able to focus my time and energy on the things that matter most, both at home and at the office. Gratitude also plays a huge role in managing my day. I start each day by acknowledging something for which I am grateful. Doing so prevents me from spiraling into a "poor me" tailspin, which is terribly unproductive.

How do you manage to keep facing forward every day?
See those three handsome fellas? They are all the motivation I need to keep facing forward. I want so badly for them to have a life where RA is not the leading actor, or even a supporting role. I face forward so that in their lives, RA is the random celebrity just dropping in for a momentary cameo appearance.

Truthfully (remember what I said about the importance of honesty???), I manage to keep facing forward not because I want to, but because they allow me to. My husband is an amazingly selfless human being and an incredible father. He has taken all of these changes in stride and has really stepped up to the plate. He makes our life possible. We also get a ton of support from my family who is always there to take on the less glamorous tasks (dishes, anyone?) so that I can spend my limited energy on the fun ones (playground!) We have great friends who are quick to lend a helping hand or a listening ear. I would be remiss if I didn't also acknowledge the role of my employer in my ability to keep facing forward. As a litigation attorney, I am used to a demanding, high-stress and intense work environment. But my firm has been a tremendously supportive partner as I navigate my RA; helping me work to my full potential, without making me feel "less than." My cup runneth over.

If you could go back to diagnosis day and tell your past self one thing, what would it be?
Don't borrow worry. Focus on the here and now. There is no sense obsessing about a diagnostic test when you will get the results next week. Save that mental energy for something that matters. Everyone's future is unknown, chronic illness or not, so you might as well love the life you live.

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