I met Julie Ryan via Twitter and blogging about chronic illness. Earlier this year, Julie asked me to be interviewed for her blog, as part of her weekly “Fibro Warrior” series. That interview was the first time I had really contemplated the different aspects of my experience with fibromyalgia and afforded me an opportunity to tell my story. I found the experience cathartic, and was inspired to give others I knew the same opportunity. And I certainly wanted to return the favor to Julie.
Julie lives in Huntsville, Alabama. She is working toward earning her degree in psychology and is an online chronic illness health advocate. She blogs over at Counting My Spoons, maintains a Facebook page with the same name, and tweets at @drunkitty2000.
1) So, what ails you?
Fibromyalgia, migraines, endometriosis, TMJ, hypothyroid, cluster headaches, and probably a handful of other odds and ends.
2) When did you receive your diagnosis (diagnoses)? How long was it from the onset of symptoms before you had a diagnosis (diagnoses)?
I’ve had migraines since I was a kid. I have no idea when I was officially “diagnosed”. The TMJ symptoms started in 2008 after I had braces put on. It took me almost 6 months to even figure out what was wrong and then find someone who knew what they were doing to diagnose it correctly and help me. I thought things were turning around, and I had a few months in 2009-2010 where it felt like things were getting better. I’d started back to school. Then in the early spring of 2010 I started feeling really tired, having really weird eye/head pain, and general aches and pains that continued to get worse. I was diagnosed with Fibro pretty quickly, (compared to many.) Once again, in 2012, I was finally starting to improve and started having abdominal pain that eventually lead to the endometriosis diagnosis. They hypothyroid dx came along in 2013.
3) How does your illness manifest itself, (symptoms)? Does it or has it manifested itself in a way that is atypical? Did that delay receiving a diagnosis and/or does that require that you receive different medical treatment?
Initially there was a lot of worry that I had MS. They did every test possible to rule that out, because of the eye pain, combined with bilateral neuropathic pain in both hands/arms. The TMJ came about after I had braces put on so the orthodontist blamed my extreme headaches on my teeth moving. He treated me like I was just some kid whining. What he didn’t see was that I did nothing but lay on the couch in pain for 3 months. The only help I found was my chiropractor. He was the one who finally figured out it was probably TMJ.
4) Have any unconventional or naturopathic treatments worked for you? What are they?
My chiropractor does acupuncture. It helps quite a bit and it was the only thing that helped my TMJ initially. Diet change has helped me more than anything else, especially with the Fibro. Since I gave up gluten completely I don’t have the full on flare days (the total and utter fatigue combined with pain that lasts for days or weeks). I still occasionally have bad pain days, but they are one-offs and never last longer than a day.
5) How has your illness affected your daily activities? How has it affected you long term? Are there things you used to love doing, but can no longer do?
Initially, it had a huge impact and there were a few years there where I did pretty much nothing. I had to put school on hold. I’m not nearly as active as I used to be. The long-term aspects of the TMJ (neck/shoulder issues) has probably had the biggest long-term impact because, when I do things that require a lot of upper body for any periods of time, it increases pain. These days I’m back to a pretty much normal daily routine. I work out several times a week.
6) How has your illness affected your mental health?
It caused me a lot of depression. There was a time when I hit bottom and seriously considered ending it. I’m doing better these days, but it still gets to me. I do my best to stay positive, focus on what I can do, and do as much as I can.
7) How does your illness affect your family and friends? Have they been supportive?
My family has been very supportive. I’ve re-evaluated some friendships and made some new friends. Most of my friends, these days, also have some sort of chronic illness. I still have a few very close friends from before that are understanding, awesome people. I think chronic illness changes your views about what is important in a friendship, (and in life.)
8) What do you wish people understood about your illness?
I don’t know where to start. For those who are healthy, I just want them to understand that those of us with chronic illness are doing what we can. We are trying. For those with chronic illness, I want them to understand that there is hope.
9) What do you wish people understood about you in light of your illness?
That I’m doing the best that I can. That I want more, and I’m working for it. That I’m trying.
10) What has pissed you off the most during your journey with this illness?
The “Have you tried…” “I read…..” “What about…” “Maybe you need to exercise more..” “You just need more sleep”. So, I guess that would be the unsolicited advice. It makes me feel like you think I’m stupid. You know I’m doing everything I can.
11) What has been the most helpful?
The most helpful thing for me has been changing my diet. I’ve totally removed gluten, which has helped the most. But I also avoid dairy, eggs, and processed foods as much as possible.
12) If you could shoot one of your doctors/healthcare providers out of a cannon because of their asshattery, who would it be and why?
This is an awesome question! LOL! It would be the doctor that I referred to as Dr. Obvious. When I hurt my shoulder earlier this year, I went to an orthopedic doctor that I’d seen previously for another issue. I think he saw fibro on my chart and just dismissed me. He didn’t even look at my shoulder other than to force me to move in directions/positions that made me scream (literally). Then he dismissed me with a diagnosis of “shoulder pain”. The other would be the orthodontist that put my braces on. Even after I found out it was TMJ he wanted to be an ass. I asked for a refund because I’d pre-paid for the whole braces thing, and he wanted to: 1) deny that it was TMJ; 2) tell me that if it was TMJ he was not responsible because I obviously had it prior; 3) not refund me my money. I had to threaten lawsuit on him to get my money back.