Lissy has her own blog, DragonFlyKeep, sharing her thoughts on life with Fibromyalgia. I’ve gotten to know her a little bit through her blog and Twitter, and I thought you should, too. Lissy was diagnosed in September of 2012.
What lead up to your diagnosis (symptoms, dr visits, etc)?
In 2009 I started running for 5k’s and actually completed two races. I was asked to do a half marathon in Jan of 2010 (best time to do that kind of run in Central AZ) and found that I just could not function enough to train. I was constantly going home to “crash” and always woke up feeling worse than the day before. When I started talking to my friends about it, I was told I was being lazy. Someone did take the time to listen and suggested I get in to a doctor regarding adrenal fatigue. The first doctor I visited wouldn’t even entertain the idea of adrenal’s and gave me a script for Xanax. I never took it. Instead, I booked myself an appointment with a naturopath and started all sorts of testing for my adrenals. With my friends encouragement and this doctor, I was finally on my way to some answers.
After a leave of absence at work, my naturopath mentioned that I should see a specialist regarding her concerns about me having fibromyalgia. She had some concerns and felt that a formal diagnosis coming from a specialist would bear more credibility in the long run than from an alternative doctor (more for work related paperwork than her abilities as a doctor). So, I did and was diagnosed soon after.
So were your Adrenals off?
Yes, my adrenals were off. I was seeing my naturopath and she put me on IsoCort to help balance out the adrenals. However, after that regimen didn’t work, she recommended seeing the rheumatalogist for her concerns that I had Fibro.
Were you working at the time?
Yes, at that time I was working a swing shift of 5am to 2pm. it was extremely hard on me and I finally left to find another “healthier” place to work. I thought I had but ended up in an even more toxic work environment. I rode that out until I found my last job (only to be let go due to industry lows in the mortgage business). I am still able to work a 40 hour work week but can not promise my employers much overtime. I request all my work to be in written format (to help with memory/foggy days) and if at all possible, a schedule that allows me to work early in the day and then home before 4pm. I do run through sick time rather quickly and generally off at least once a month due to a flare.
What was your family life like (married? kids? etc?)
At the time, I was living alone with my two cats and dog. Shortly before my formal diagnosis my mom came to live with me. This was a God send as she was able to observe my days and how I handled my flares. She is the one that noticed that I do far worse in the hot Arizona summers (flare more often) then in the winters. In December of 2012, my family and I found a house to rent. It has been a blessing to have such a supportive family!
How did your family initially handle your illness?
At first, the concern was that my anemia was causing the issues. At six months old, I was diagnosed with acute anemia and it has been something that was carefully watched throughout my life. Once my family could see what I was going through first hand, they were able to see it was something different.
How has your family/ work situation changed since Fibromyalgia entered your life?
I often tell people that having a chronic illness in life is like going from 100 mph to zero. Everything stops and slows down. I have to work, I have no other alternatives for that and (thankfully) my illness has not affected my ability to work (thus far). My family and I have grown stronger and though I did lose quite a bit of ‘friendships’ the true friends stuck around to support me as well.
What do you feel is the most challenging aspect of Fibro?
Mind over body. I keep pushing the ‘envelope’ per se on my good days to get as much done as possible. You know, to make up for the bad days. It ends up biting me in the ass and I am down with a flare for all my efforts.
Do you have any other co-existing conditions? If so, what are they and how do they impact your Fibromyalgia?
Migraines are still an issue though with the help of magnesium supplements they are far less frequent. IBS is another along with restless legs, additional back pain and the list goes on…
What (if anything) have you found/ done that has improved your symptoms?
I still struggle with taking medication but I am down to three I take for pain and my general symptoms. There are various supplements I take (and still have to work on bringing my Vitamin D levels into an acceptable range). I also started cutting out processed foods and grains. I am about 80% Paleo/Primal with my eating habits and have discovered that grains truly affect my IBS symptoms. It has been a process all its own to figure out what works and what doesn’t
What is the best advice you’ve received regarding Fibromyalgia?
REST!
What was the worst advice that you followed?
You should work out more, you are just being lazy and depressed. You should be happy your are breathing (yep)
What is one thing you’ve learned about yourself since your diagnosis?
I have learned to be a bit braver. I let the world use me as a doormat and I didn’t stand up for myself. I feel that fighting for my health has brought out the brave little warrior in me once again.
What made you decide to start blogging about your illness?
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