Friday, February 26, 2016

Facing Forward: Julie

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: Julie
Location: Alabama
Diagnoses: Fibromyalgia, Endometriosis, Migraines, Cluster Headaches, TMJ, thyroid disorder
Age at Diagnoses: Have had migraines as long as I can remember, diagnosed with TMJ at 32, Fibro and cluster headaches at 34, Endo at 36

How are you currently treating your condition?
I use a combination approach. Medications overall were making me feel worse rather than better. What's helped the most is diet and lifestyle changes. Cutting out gluten pretty much reversed the major symptoms of Fibro (at least the over-arching pain). I still have bad fatigue days and I have pain but I can ignore it. Pacing and lifestyle changes, in general, are more important as they allowe me to do more and live a fairly normal life. I take a lot of supplements (Magnesium, Vit D, Vit B, FibroCane Daily & Serenitea from FibroCane), I use CBD oil muscle rub and lotion. The lotion is especially helpful with neuropathic pain in my feet. The only prescriptions I still take are a low dose of gabapentin (which also helps reduce neuropathic pain) and a muscle relaxer to help me sleep and keep the TMJ at bay. I also went through a pretty intensive treatment for the TMJ in the first couple of years after diagnosis. It involved multiple splints. I still sleep with a splint (nightguard) and will forever to keep my jaw aligned.
What are the biggest challenges you have faced since your diagnosis?
Learning my limits and learning how to live again. The first couple of years after Fibro hit I couldn't do anything. I laid on the couch 90% of the time or didn't get out of bed. After 2 years of that I'd had enough and had to find a way to go on living again. I had to decide if I was willing to do anything to feel better and I was, thus the major diet and lifestyle changes. They were big (and still are) but they have been worth it. 

What are your favorite tips and tricks for managing everyday tasks?
Pace yourself. Take breaks and listen to what your body is telling you. Is your body telling you it's tired? The it's time to stop (or at least take a break). Love yourself. You've got to take care of yourself and put yourself first. You can't be there to help others if you've got nothing to give.

How do you manage to keep facing forward every day?
It's pointless to look backward. Life has changed a lot. There were plans that I no longer have, but I have new ones. I've had to set my sights on new things and a new future. I'm ok with that now, but it does take some time getting used to and some accepting to let go of the plans you had. 

If you could go back to diagnosis day and tell your past self one thing, what would it be?
Don't take the pills! I think the pills made me feel worse initially. Had I just kept pushing forward and been willing to accept the idea that maybe food changes and lifestyle changes would help, I'd have saved myself two years of misery. But I probably wouldn't have listened to myself any more than I di anyone else who tried to tell me to try diet changes or to not rely on a doctor for a "quick fix." Doctors don't have all the answers.

Do you have a blog you would like to share?
I blog at Counting My Spoons.

Would you like to be featured on Facing Forward? If so, please send an email to  

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