Friday, March 24, 2017

Facing Forward: Heidi

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: Heidi
Location:  Seattle, WA
Diagnoses: Rheumatoid Arthritis, two rare genetic muscle diseases (Autosomal Dominant Centronuclear Myopathy and Marie-Charcot-Tooth Disease) along with some “mysterious” GI, heart and neurological symptoms. I think they’re all related, but hey, what do I know?
Age at Diagnosis: 
39 and 42 respectively

How are you currently treating your condition?
There is no treatment for my genetic muscle diseases except to manage my neuropathy pain, which I do with gabapentin. As for RA, I started off with methotrexate injections and prednisone for flares. After about six months of losing my hair and no significant improvement in symptoms, I asked to try a biologic. I started out on Humira which worked marvelously for about three months, after which time my symptoms came roaring back. My doc then switched me to Enbrel. The same thing happened with this med, but I did give it a longer try.  After about a year of marginal results, my doctor tried me on Orencia. I’ve now been on Orencia for about a year with somewhat successful results. I’ve been able to keep my prednisone down to 10 mg/day for the most part and really only deal with significant flares when the weather changes or if I’m sick or fairly stressed. 
Besides medication, I started following the Whole30 diet on and off. Although I lost about 10 pounds during the first month, I didn’t see a significant change in RA symptoms. I did feel better, however, in a general sense, so I’ve tried to eliminate dairy, grains, and sugar from my diet permanently, although that’s been harder to do long term than I thought (especially as I stare down a box of Tagalongs girl scout cookies as I write this!) Finally, in the diet and medicine category, I just recently started taking high dose Vitamin D. Yes, I am deficient, which many people living in Seattle are, but that’s not why I take it. There is actually some really interesting research on using Vitamin D as a way to treat leaky gut, which, personally, I suspect as the reason for many of our autoimmune issues these days. As far as exercise goes, I’d love to say I do it, but I’d be lying. I use to be fairly active, running half marathons and ragnars, but no longer do so due to pain and fatigue. I was actually training for a ragnar when my knee began to hurt more than usual, which led to my RA diagnosis. I really miss running, so I try to get out a walk or hike as often as I can, especially during the summer. 
What are the biggest challenges you have faced since your diagnosis?
Hands down: fatigue. I have a pretty high pain tolerance, so I am able to push through it most of the time, but I have to say the fatigue has kicked my butt. I have to take a nap nearly every afternoon and sometimes in the morning too. This sometimes means coming home after dropping off my son at school and crawling back in bed for another hour or two. Even though I hate what this does to my productivity, doing so seems to “reset” my body, allowing me to get through the rest of the day. The other really frustrating challenge is my now horrible memory and brain fog. Losing 15 IQ points and literally failing the short-term section of my neuropsych evaluation was a huge blow to my ego. I’ve always prided myself on being smart and capable, so this issue was really hard to swallow. I’ve tried to make accommodations which have helped, but sometimes I still end of going to the store three times to get everything I need. 

What are your favorite tips and tricks for managing everyday tasks?
I try to give myself extra time, ask for help (which I never used to do), create lists, and I use a ton of ice and heat for pain. I also splurged and got myself a membership to Massage Envy.  Giving myself grace to rest when I need to also really helps. 

How do you manage to keep facing forward every day?

I like to make fun of myself. Keeping a sense of humor is very important! For instance, I have “Dory” sign in my house and an “I love Naps” t-shirt I wear often. I also find its important to have close friends to support me who truly understand chronic illness. I have a few friends who have issues themselves, so we support each other a lot. My faith, family and helping others also plays an important role in my well-being. To keep a sense of purpose, I work part-time as the women’s pastor at my church. In this role, I’m able to focus on supporting others in their pain and triumphs which helps take the focus off me and keeps things in perspective. I also keep my hands active (cuz my doc said I had too) by flipping furniture as my body allows. I find great satisfaction in this creative outlet and it brings in a little extra money too. This hobby has also turned into a design and faith blog called “Meaningful Home” which can be found at Here I explore ways to bring meaning and beauty into your life through home d├ęcor & design. Honestly, both these endeavors were not on my “career plan” whatsoever, but having them has been the life-giving inspiration I need to keep facing forward. Being useful through work is very important to me. Finally, I would be remiss if I didn’t mention how my son and husband keep me going. I couldn’t ask for a more supportive, amazing husband. He helps around the house a ton and puts up with my complaining when it gets out of hand sometimes. He is incredibly understanding! My son, Caleb, is the light of my life and the reason I keep looking forward to the future. He was a true gift from God and is my little prayer warrior. He is always praying for me! 

If you could go back to diagnosis day and tell your past self one thing, what would it be?
Ok, not one, but three things: 1) It’s going to be ok. 2) Be your own medical advocate. I can’t emphasize this enough. Doctors are humans too, they make mistakes and they don’t know everything. I’ve found that patient boards, conferences, and research have helped me diagnose and treat my conditions more successfully than without. 3) God can and will use this diagnosis for good if you let Him. 

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