Fibro Warrior Wednesday – Sara

This week’s Fibro Warrior is Sara, from Alabama. She was diagnosed with Fibro in 2007, at the ripe old age of 21 (we’ve had a lot of young Warriors share their stories lately).

Give me some basics… Are you married? Kids? Pets? Work? What do you enjoy?
I’m married (9 years this fall!) with 2 kids, 8-year-old daughter and 2-year-old son. I am currently back in college and I own work-from-home businesses; a graphic design and development business and a Juice Plus+ franchise.

What lead up to your diagnosis (symptoms, dr visits, etc)?
I had been seeing doctors since I was 13. No one could pin point my headaches, back/neck pain or any of my other random symptoms. They said I was just a “stressed” kid. I wasn’t.

What was your life like when you were diagnosed?
I was newly married and had my daughter in 2006. Things went downhill from there. I struggled a little with Post-partum depression but I truly believe it was triggered by not feeling well. I still get so frustrated at myself when I have a bad day. There were SO many days, almost 2 years of them, where we didn’t even shower and get dressed until right before my husband got home. We spent the days with me on the couch and her playing in the room with me. I felt like I had two or three spoons a week designated for outings and I used them on church and the grocery store then the rest of the week was shot. Clearly I didn’t work, I couldn’t even keep up with a 750 square foot house and a baby!

How did your family initially handle your illness?
I had a few skeptically ask, “Oh, whose doctor said they had this?” With eyebrows raised of course. I quickly stopped talking about my health problems with everyone because fibro is “the crazy disease.” There are times I still don’t mention my diagnosis because no one takes it seriously and I instantly lose credibility with them.

What do you feel is the most challenging aspect of fibro?
The rain. The stupid, freaking, rain. Living in Alabama, tornado season gets me more down than any other part of the year. Every pressure front I can feel. From my head to my toes, I can just feel it building. Just last night I was nearly in tears because the dumb rain wouldn’t just hurry up and come and of course I’ve overdone it this week. My husband jokes about my “backlar radar” and will ask me about the weather instead of whipping out his phone to check.

Do you have any other co-existing conditions? If so, what are they and how do they impact your Fibromyalgia?
I also have dysautonomia, recently diagnosed but not recently symptomatic. It’s pretty likely that my dysautonomia actually preceded my fibromyalgia and I wouldn’t be surprised if researchers find that disorders like that actually cause disorders like fibromyalgia and Chronic Fatigue Syndrome in the future. They are closely intertwined. When one is a wreck, the other is a wreck.

What (if anything) have you found/ done that has improved your symptoms?
Many things actually, but consistency is key with any remedy. Yoga once a week isn’t going to help but exercising every single day will. Eating a salad every other day isn’t going to help but a good, solid, low-processed, clean diet for every meal will! (Juice Plus+ helps me with that, that’s why I bought a franchise. I sure spent enough on the products for my own benefit…Yeesh!) I’m also on 35% of a normal adult dose of Savella and the smallest dose of adult Zyrtec. Both of those help with inflammation but the side effects were intense for a while. It took about 6 months before I saw any improvement on those and for the first 3 I was significantly worse.

How open are you with friends & family about your illness & symptoms?
Not very. I hate it when people judge me. No one wants to hear how I’m really doing sometimes. And I most certainly don’t want your pity. If I actually admit my physical weakness in front of you, you’ve made it into my inner circle.

Do you blog about your illness? If so, what inspired you to do so?
I have before, about what not to say to someone with fibromyalgia, and most recently after the Dysautonomia diagnosis. I do have a lot of people ask questions who generally want to know, but when they find out it’s such a loaded answer, they never get the whole story. I want to spread awareness for these disorders so other people like me won’t have to wait so long for that smidge of hope that comes in the form of a label only 5% of the population can pronounce.

What is the best advice you’ve received about fibromyalgia?
I’ve actually never received any. My fellow fibromyalgiacs are generally much worse off than I am. I only know a couple. Their symptoms are not as managed. When I was newly diagnosed I didn’t have the strong support I hope to be for my fellow Spoonies.

What was the worst advice that you followed?
…”You just need to…”

If anyone ever tells you that, just run. Away. Fast. They have clearly never had any sort of disorder with no cure. Exercise and nutrition will help (which is usually what they recommended) but when you’re THAT low, you can’t just say that to someone. It’s maddening because their ignorance of your disorder shines more brightly than their good intentions.

What is your favorite way to cope with your life as a Spoonie?
I am so blessed to have been able to find work that’s not really work. I love to veg out in an afternoon of design.

What is one thing you’ve learned about yourself since your diagnosis?
I am a LOT more hard-headed than I originally thought. I love it when people tell me they had no idea I struggled with such health problems. I am a prideful faker, through and through.

What is the most important piece of advice you would give to someone newly diagnosed with fibro (or even still seeking a diagnosis)?
If your doctor treats you like you’re crazy, find another one. I stopped counting my doctors when I hit 20 before 20. Even then, at the end of the day, treatment is hit or miss for any of these conditions. You need to look at improving your overall life, official diagnosis or not. Find out what works for you and keep doing it. Keep a log of your triggers and stop them. A lot of us are sensitive to certain foods, some of us it’s gluten, some of us it’s sugar. For me? It’s just processed. If I eat a low-processed, clean, diet, I’m okay the next day. Fibro isn’t one size fits all, no chronic illnesses are. What works for me may not work for you. Be ready to be your own lab rat for a few months and figure out what makes you better and worse.

 Is there anything else you’d like the readers to know?
At the end of the day, you need a shred of hope. Find yours and latch on. Sometimes I’m in the minority with my faith, but it helps keeps me going.

2 Corinthians 12: 9-10 – But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly of my weaknesses, so that the power of Christ may rest upon me. For the sake of Christ, then, I am content with weaknesses, insults, hardships, persecutions, and calamities. For when I am weak, then I am strong.

This interview is part of the weekly Fibro Warrior feature. Each Wednesday a new Fibro Warrior is interviewed and shares their story. Be sure to sign up for my email list to make sure that you don’t miss a single one.