I am a chronically awesome woman living in Milwaukee, WI making the best out what the universe throws at me. I have severe fibromyalgia which causes widespread body pain and stiffness as well as extreme fatigue and cognitive issues (generally called “fog”). My symptoms are unpredictable and debilitating even with 8 different medications but have been drastically reduced simply by discovering I also have rheumatoid arthritis. One would think that I don’t truly have fibromyalgia then, but my doctors and I can tell you that is not the case after trying to get rid of the medications I take specifically for the condition and failing miserably. I do indeed have both, and I am disabled.
When I was 12 years old I caught a virus that just never went away. It dragged on long enough that the school threatened to call the police on my parents if they didn’t send me back. I don’t remember getting sick or much of that school year, but my late mother told me that I was never the same since. We believe that’s when my fibromyalgia started.
It began with fatigue and stabbings pains in my chest and shins. I was constantly tested for mono and, when found to be “perfectly fine”, simply prescribed ibuprofen for the pain. I carried a bottle of it in my purse at all times starting in middle school.
As I got into high school I started to experience lapses in my memory, falling asleep in my classes, and began getting lost in very familiar places. It became a running joke how I could get lost in my own house, and while I have never had a problem laughing at myself and actually enjoy doing so, this was one joke that I didn’t find funny. Spatial directions and navigation became my enemy, a giant sting to my pride of being a smart, independent young woman. You cannot even imagine what a blessing GPS has been in my life!
In college I began passing out in the shower and experiencing vague flu-like symptoms. Strep throat or a sinus infections would take me down every few months, but very often I would be told my low grade fever, chills, and aches were a virus and I would just have to wait it out.
I was 24 when I have my very first flare. I remember standing in my living room and being attacked by pain that felt as though my skin had been torn from my body and all my nerves were being scrubbed down with steel wool. Nothing could touch my body without causing more pain, and I couldn’t even grab the steering wheel in my car to drive myself to the ER. So I waited it out in bed believing I was most likely insane, a theme that would play out over and over in the upcoming years.
After that flare-up my symptoms came on even stronger. My muscles had always been tight, but now they felt as though they may snap. My fatigue was out of control, I was often in trouble at work for being out sick with the flu or a virus, and the random pain that moved throughout my body sending me to the doctor for my shoulder one month and my hip the next was only made worse by the fact that my doctors kept telling me I was “perfectly fine”.
Finally a physical therapist posited that I had fibromyalgia and referred me to a specialist who confirmed her suspicions. At first I was thrilled to finally have a name for what was wrong with me! But that quickly faded as I realized there wasn’t much anyone could do about it other than a few medications. I was defeated once again and continued to cycle through doctors who were not interested in treated someone like me, didn’t believ fibromyalgia was a “real” diagnosis, or who flat out told me it was all in my head.
Everything I know about my condition I learned myself. I dove into books. I joined online support groups. I connected with others through my blog. Physical therapists became my favorite people as they were the only ones who understood me and bothered to teach me anything. I searched for a doctor that would actually believe me and treat me. I tried every home remedy, every exercise, every meditation, and every supplement ever suggested only to find my symptoms worsening each passing year.
Finally, at the age of 33, I filed for disability as I considered dropping my 12 hour a week work schedule down to 10 in order to keep my symptoms manageable; only years prior it was routine for me to work overtime every single week as I absolutely loved my job. Three months after I filed I felt a weird lump on my back as I was driving – I thought it was a tennis ball or one of my son’s toys stuck in the back of my hoodie. I started work and could barely lift my arms while this intense burning pain began circling my rib cage. I went home early. And I was never able to work again.
I spent 6 months on my couch in writhing pain, and no one wanted to believe anything was wrong with me because it was “just fibro”. The irony of the medical world finally accepting my diagnosis just when it could be conveniently used against me is not lost on me. It felt as though barbed wire had been set on fire and lassoed around my rib cage as a team of horses pulled it tight. I could barely breathe, walk, bathe, cook, clean… Everything went to the wayside as I focused only on taking care of my then 3 year old child who told me he thought I didn’t love him anymore because I was no longer able to pick him up and carry him.
I fought hard for every improvement. I scoured until I found doctors that would listen. I went through 8 different medications for my condition until the very last one on the list actually helped. I quit a million times. I cried in waiting rooms and in parking garages feeling crazy, defeated, and sometimes flat out degraded. I had major improvements only to fall into epic flares. I became severely depressed and began seeing a therapist. I found an even better team of doctors. I won my disability case after 6 years of fighting for it. And then I was diagnosed with RA.
Today my life is nothing like it was 8 years ago and it has taken me quite a while to come to terms with the fact that it may never go back to how it was. But as I sit here today I can see that even in the darkness there is still a light inside of me, and that the darkness almost makes that light more focused and easier to see than ever. I’m still here in spite of the pain, I still have a purpose in spite of all that I cannot do, and I’m still smiling in spite of everything because I choose to be.
I hope you enjoy my blog.
You can hear my raw yet hilarious podcast all about living with chronic illness called The Flare online or on any podcast app.
You can also hear my weekly segment called The Art of Recovery on AM 1590 WCGO on Playtime with Sid & Bill every Sunday from 1pm – 3pm Central. You can listen on the radio, online, or live on the WCGO Facebook page.