Most of you know me from one job or another. Others, I had the pleasure of sharing the stage with or perhaps a class at school. Still more from church. I was that waitress who sang for your brother’s birthday, or helped you with your homework, or that you would watch yet another Harry Potter or Star Wars marathon. I was always up for an adventure and a cheesy joke (particularly if it was Gouda…..and yes, I went there!) I worked as a senior rep doing finance, had my own apartment, vacationed, would go to both live performances and the movies whenever I could, and was blessed to be doing paid music gigs on the regular. But while that is who I used to be, it is not who I am now.
About ten months ago I got a migraine. Now this was not by any means my first headache or even migraine. While I may had been familiar with headaches at this point ,they were not so frequent as to put me in the Chronic category, or so severe that I would even think of going to the doctor. Day 4 of the migraine came and went and still no relief. Then day 5 and 6 at which point I got my GP on the phone for help. She gave me a course of steroids to stop the migraine, anti-nausea meds to help with that lovely bi-product, and a preventive med for the future. I had a vacation already scheduled to visit family so I picked up my new and varying prescriptions and crossed my fingers that western medicine and a week away from work would fix me up. I’m sad to say that it didn’t. I soon became a regular at my doctor’s office. This med, that shot, all the labs and scans you can imagine, chiropractors, acupuncturists, infusions. Some meds made me a zombie, others made me just plain stupid (how do you do basic subtraction again…) but they all had one thing in common; none of them worked. I missed work, holidays, birthday and going away parties, and on and on. All this time the headache continued and now I was having back and hip pain which left me unable to walk without a limp and unable to be on my feet for much more than 15 minutes. I didn’t know what was going on with me or even if my symptoms were related to one another. I was physically and emotionally drained, still in pain, and didn’t know what to try next.
Then in late January of this year, God sent me an angel! After telling me about herself and her medical journey as a whole, Salena, aka my angel, asked me if I had ever heard of Fibromyalgia. I tried to be polite as I replied that I thought it was the made up disease that doctors gave out when they couldn’t actually find anything wrong with a patient. After laughing, she kindly educated me on the basics and explained her doctor’s theory on what he believes cause Fibromyalgia, or Fibro for short, and the symptoms that he ascribes to Fibro, and his treatment protocol developed from decades of working exclusively with Fibromyalgia patients. Before long I had an explanation for all the weird, random and often very troublesome health issues I had been dealing with for over twelve years!!!!! I will wait for another time to go into the specifics of Fibro and my past health issues, but for now all you need to know is that I had been in a miserable way. But now, Not only did I have a plausible explanation for my pain, but an actual treatment was available.
That very night I tracked down the book written by this doctor and read it cover to cover. The next day I called and made an appointment to with this doctor for later in the week, then all there was left to do was wait. But the fear and dread started to creep in. What if I saw this doctor and he too said he could find nothing wrong with me? Fibro fit all my symptoms but what if he didn’t confirm the diagnosis? What then? I was so hopeful but so afraid too that this would be just another dead end.
Well, after a very long three days, I had my appointment and to my immense relief, a confirmed Fibro diagnosis! Now it was time to start getting better. This doctor’s treatment is not easy nor is it a quick fix. I have been on it for about seven month’s now but still have a long road until I am fully functioning human again but I can say that I have seen some progress. I don’t know if it will be weeks, months or even a year before I am “better” but just have to remember to be patient since everyone responds differently and in their own time. While I continue this doctor’s treatment protocol, as well as a few others just to be on the safe side, I am hopefully that some day I can get back to my old self, but I am still in pain everyday. It has been ten months now of daily headaches and other pains, fatigue, GI and skin issues as well as sensory overload to things like light, sound, smells, and even crowds sometimes.
My life has been turned upside down by Fibromyalgia. If I do go to the movies, it’s with ear plugs. I have to turn down gigs because it hurts too much when I sing, my brain is too fuzzy to remember lyrics, and I don’t know if I can stand for the length of time required for the gig. I now have to keep my driving to within an hour driving radius, my trips to the grocery store under a half hour and often have to cancel social plans. There are days I can barely get out of bed and I often don’t leave my house for days at a time because of pain and extreme fatigue. In March I went out on disability as I was no longer able to cope with the workload and just a month ago, I made the tough and emotional decision to give up my apartment and move back home with my parents.
So to recap, I have no job, I live with my parents, don’t perform, and avoid things I used to love because its just too much hassle with my current health issues draining all enjoyment from them. This is not to have a pity party or to make you feel sorry for me. This is my reality, at least for now, and I want to make it count. This new chapter is just that and I am determined that future chapters will soon start to include more of the things I love that have been missing as of late. But in the meantime, this is my reality, and I want to do more than just survive.
Now I have learned some life lessons in my time and here are a few. There is a reason why I am sharing these, I swear it, just hang in there a little longer!
1. When in a particularly bad spot, there is almost nothing better then having someone get it. To feel like someone you speak with, or whose words you read, understands your situation. (This is why support groups are so helpful.)
2. If you can help someone through a similar trial that you have endured, then you can add reason and purpose to your own trial. (In other words, finding the collateral beauty in a tough situation. Yes, I am totally stealing that term from the movie, though this is by no means a new concept.)
3. Go help someone! With anything! No really, just do it, because 99% of the time, no matter how bad you are feeling, it will make you feel better. (It’s always good to think about others and turn the focus outward from your own situation. It’s a good way to find a greater perspective and cultivate gratitude for the good things in life. They are always there, you just have to be looking for them.)
4. You don’t have to regret a mistake as long as you learn from it. (This one doesn’t really have anything particular to do with this blog, I just like it and wanted to share.)
So why share all of this? I want there to be a point to my suffering. Now that may sound a little melodramatic, but there it is. I am suffering, but more importantly, I want something good to come out of it. I want to help people. Hell, even if it is only one person, it will be worth it; to help someone understand what there loved one is going through, to help someone find a better treatment option, or to remind people that they are not alone in their struggle. If I can do that, then this chapter of my life doesn’t only have to be about pain and doctor’s visit, it can be about finding and sharing hope.
So that is why I am here, in this cyber land of the matrix, writing to you all. This blog is not just for Fibromyalgics, but for caregivers, and anyone willing to read it who cares about showing compassion to their fellow man. We all know someone with health issues whether a a friend, co-worker or family member. Maybe you are a primary caregiver to someone battling a chronic or terminal illness, or maybe the ill person is you. The point is that this effects all of us, so we all need to know more. The horrible process of finding the right diagnosis, the issue of disability, medical theories and guesswork, having an invisible illness, polypharmacology and the problem with getting pain meds….these are all subjects that I hope to shed some light on, as well as some more personal experiences and probably a few corny jokes a long the way.
This is my journey. This is me. I’m gonna make it count.