This week’s Fibro Warrior interview is with Julie. Julie is a sweet woman who I’ve connected with on Twitter. Twitter is just full of helpful Spoonies. She also blogs about her life as a mom with chronic illness on her blog, Julie Unfiltered. After talking with her a good bit there I wanted to get to know her better and share her story with you.
When were you diagnosed? How old were you at the time?
I was finally diagnosed in February 2013. I was 31.
What lead up to your diagnosis (symptoms, dr visits, etc)?
My diagnosis was almost six years in the making. While at work, I had a sudden, sharp, and stabbing headache on the right side of my head. After several seconds it went away, but left me with numbness and tingling on the left side of my head, face, and arm. An ER visit, blood tests, two neurologists and the MRI’s they ordered couldn’t find a cause for the burning and tingling numbness I started having in my head, face, and all four limbs. Since the symptoms stopped a few weeks after discontinuing my birth control, (the doctor wanted to rule out blood clots) my husband and I chalked it up to hormones from the birth control messing with me.
The same symptoms came back in January 2012. (I experienced other symptoms in the intervening years that hindsight tells me was the fibro, e.g. morning stiffness.) My doctor ran more blood tests. Nothing. I tried a chiropractor, but as you can imagine, that only made things worse. I returned to a new doctor in the fall of 2012, begging for help. I was in so much pain by this point, and the depression and fatigue were overwhelming. She was reluctant to diagnose fibromyalgia without trying medications and seeing how I responded to them first. Cymbalta was a revelation for me. Within two hours of taking the medication, I felt better. Not perfect, but better. A few months later when the Cymbalta wasn’t helping the pain, I began Lyrica. Last February I went to see a rheumatologist. He diagnosed me in less than five minutes.
Were you working at the time?
Fortunately, I was not working outside the home when I was diagnosed. If only being a stay at home mom wasn’t a full-time job….
What was your family life like?
I was (am) married and have two daughters. Rachael is 5 and Zoe is 2.
How did your family initially handle your illness?
My husband, Mike, has always been supportive. It’s still something we’re always getting used to, though. Sometimes it’s easy for him to forget that I have a chronic illness that affects me 24/7. Rachael oscillates between helpful and hanging from my neck when she hugs me. While she understands that I have an illness, she cannot yet grasp that there are just some things I’m unable to do.
How has your family/ work situation changed since Fibromyalgia entered your life?
Nothing has really changed. We’re just learning to adapt.
What do you feel is the most challenging aspect of Fibro?
Finding balance is incredibly difficult. As the mother of two small children, I can’t simply say, “Good luck to you,” and check out for the day when I’m incredibly fatigued. Saying no is the worst. There is so much guilt that comes with not volunteering for such and such function at school or not being able to play with the girls. But I have begun to learn when to say no so I can say yes to something else later.
At some point I’ll get over the suckitude that is having to ask for help.
Do you have any other co-existing conditions? If so, what are they and how do they impact your Fibromyalgia?
I live with depression and anxiety. All three feed on each other in a sort of messed up psychosomatic buffet. The pain of the fibromyalgia triggers a depressed mood. Anxiety triggers pain. Depression intensifies the pain and anxiety.
While I have struggled with my weight all of my life, Lyrica has caused a tremendous amount of weight gain. This, you can imagine, is certainly no help when it comes to my pain. Or depression, for that matter.
What (if anything) have you found/ done that has improved your symptoms?
Aside from medication, trying to lower my stress helps. When I’m stressed, my body will either begin to ache or experience searing/prickly pain.
What is the best advice you’ve received about Fibromyalgia?
This may seem obvious at face value, but the best advice I’ve received is to not overdo it. I have a friend who has lived with chronic fatigue syndrome for years. She stressed that, even if you’re having a good day and feel like you can conquer the world, you shouldn’t push yourself. It will just catch up to you the next day.
This may seem obvious at face value, but the best advice I’ve received is to not overdo it. I have a friend who has lived with chronic fatigue syndrome for years. She stressed that, even if you’re having a good day and feel like you can conquer the world, you shouldn’t push yourself. It will just catch up to you the next day.
Even when you feel like you can conquer the world, remember not to overdo it. @JUnfiltered Share on X
What was the worst advice that you followed?
I let my rheumatologist talk me into switching to a different medication in the hope that I would be able to lose some weight that Lyrica had caused. It was two months of torture.
What is one thing you’ve learned about yourself since your diagnosis?
That I am not Superwoman…..and that’s okay.
I am not superwoman, and that's OK. #fibrolife #spoonielife via @JUnfiltered Share on XNow that you’ve gotten to know Julie’s story, please be sure to check out her blog – Julie Unfiltered, and follow her on Twitter.
If you enjoyed this interview, you may want to check out other interviews in the Fibro Warrior series. If you sign up for my email newsletter, you’ll never miss a new one.
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