Friday, March 18, 2016

Facing Forward: Donna

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: Donna
Location: Delaware, USA
Diagnosis: My primary diagnosis is fibromyalgia
Age at Diagnosis: 40

How are you currently treating your condition?
Right now, I'm taking a natural approach to treatment. During my first year after my diagnosis, I tried several prescription fibro medications, but wasn't able to take any of them due to side effects or because they just didn't work. Six months ago, I began working remotely with a fibromyalgia specialist in Alabama. He is a doctor of functional medicine and uses supplements and diets to treat the underlying causes of fibromyalgia. I take quite a few supplements, including some to support my adrenal glands, thyroid, digestion, and brain function. I also take many of the typical fibro supplements, including magnesium malate, a high-quality multivitamin, fish oil, CoQ10, etc. I'm on an anti-inflammatory diet and have cut out gluten, processed sugar, fast food, chemicals/preservatives, etc. I've lost 40 pounds since starting the diet in September. Overall, I have less pain and more energy. I do not feel normal, but I'm markedly better than I was when I started working with my new physician. Since my diagnosis, I've also had some success with using CBD oil for nerve pain and low-dose naltrexone for overall pain.
What are the biggest challenges you have faced since your diagnosis?
I'm fortunate that I've worked from home for the past 10+ years, but even with that flexibility it's been a struggle to continue to work. My income has taken quite a hit due to moving to a new state and being sick.

It's been extremely difficult to find treatments that will reduce my symptoms, and it's been hard to get family members to understand how I'm feeling, because on the outside I look just fine.

I struggle with pacing because mentally I still have lots of goals and dreams, but my body will not cooperate with everything that I want to do.  

What are your favorite tips and tricks for managing everyday tasks?
I have always been a structured, organized person, and I find that I have to be even more so with fibro. I depend on lists now to get anything done, because I can be forgetful and scattered. I try to do certain household tasks every single day, so that things don't pile up. For example, I try to always wash at least one load of laundry and empty the sink of dishes every day. I have a Roomba to help with household vacuuming. Recently I hired a cleaning company to do the heavy cleaning (like bathrooms and kitchen) once a month because it was becoming too much for me to handle on my own. I've shared more of my cleaning and organizing tips on my blog, 20 Helpful Tips for Cleaning & Organizing When You're Chronically Ill.

How do you manage to keep facing forward every day?
I'm a realist to my core. Aside from ending our lives, what real choice do any of us actually have other than to carry the cross we've been given? The sun is going to rise and set every day. We can either choose to move forward with as much grace as possible, or we can make ourselves even more miserable by having a negative attitude. I try to look for the positives in this illness and to use my own experiences to help others as much as possible. That gives me purpose.

If you could go back to diagnosis day and tell your past self one thing, what would it be?
Be your own advocate. You're the one who has to live with this condition every day, not your physicians who forget about you as soon as the next patient walks through the exam room door. Do your own research. Be proactive. Lots of small changes can add up to measurable results. Don't acceipt it when they tell you, "There's nothing else we can do..."

Do you have a blog you would like to share?
I blog about fibromyalgia and ME/CFS at Fed Up With Fatigue. I focus mostly on news, research, and treatments. 

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


Fed Up with Fatigue said...

Thank you for featuring my Q & A. I appreciate the opportunity to raise awareness for those living with fibromyalgia.

PP said...

AmaIng story! I would appreciate any info on the anti inflammatory diet? Best wishes, Pat P.

Gunna said...

I think Fed Up with Fatigue is one of best blogs on fibromyalgia. Lots of helpful information and a positive attitude. Highly recommend it for anyone with this or similar conditions.