How do you make Fibromyalgia, an invisible disease... visible?

How do we make something that is not seen, visible? Through awareness is one way, through discussions, education, and media to bring it out into the light is another and that is why I am taking the time today to write about my experience with Fibromyalgia. I hope you will take just a moment to read about this because it could be affecting someone you love right now and you just don't know it yet and the diagnosis could be right around the corner. 2-4% of the population suffer from this horrific disease and the numbers continue to grow every day. This is no longer just a "woman's disease". More and more men are being diagnosed with this disease too. Take a moment, won't you and get ready to be educated about something that may change your life, or at the very least, your thoughts about pain.

My story started when I was quite young and Fibromyalgia was not even heard of yet. I use to have many aches and pains. Back then they called it "growing pains" and they still do to this day and most of the time it is, the difference is growing pains go away in a period of time. As my life went on and I became an adult, I am not too sure what event brought this to full circle actually. It may have been a car accident. The multiple surgeries due to the early age female cancer. Or maybe the tragic death of my parents. Or a multitude of mishaps in my life. I had seen several doctors and had many X-rays over the years all proving I had arthritis in different places in my body, but the pain was never where the arthritis was. I was beginning to believe what my mother had been calling me my whole life, maybe I actually was a "hypochondriac". Then, I met a doctor that was willing to take the time to sit down with me for about an hour, write a timeline of my life, and determine when everything took place. Which doesn't seem like it would mean a whole lot, but it really did make sense when searching for answers to why I hurt all the time when I had no real reason as to why this was happening. We then spoke to a Rheumatologist, got some tests done and found that I did not have Rheumatoid Arthritis. We ruled out several other diagnoses and came to the conclusion that I have Fibromyalgia.

That was the day my entire life changed, but I also made a choice, I chose to not let it control me, I would control it. Little did I know that statement was going to be the biggest challenge of my life. As time went on and I researched, educated myself, and listened to others talk about Fibromyalgia, I decided that I was going to stay in shape and listen to my doctors. I would do what they tell me to do. Take the medicine they tell me to take. Take the shots they tell me to take. I did it all... until I found out one of my doctors was over prescribing and over medicating me. THIS event was a complete eye opener. I found out that I had been on a dose that a cancer patient in the last stages of life would be taking! Morphine doses so high, that the pharmacists, I believe, actually made a call and turned him in. I did not know any different. I trusted him with my health & my life for that matter, and that was not the end of it. The following days were some of the worst days that I was going to have to endure. The doctor that I had come to know and trust and actually brought some Christmas cookies to, had treated me like I was just a "test dummy" or worse... one of his "lab rats", and he was not the one that had to suffer for it. Sure he got some legal punishments, but I was the one that had to suffer through the withdrawing from that massive amount of pain medication. Not him, ME.

I had to see another doctor within the practice and they decided to put me on a low dose of medication through a patch, that I tried to explain that would not work because I had used a patch before and they do not work on my body but the doctor would not listen to me, so... I got sick for over a week because once again, no one would listen to me. Finally, they brought me back in and we got some medication that worked, but it took me having to go through all of that and literally duct taping a patch to my body to prove to them that I was not lying. The story is more in depth than that but for sake of time and space, I will digress. However, I still feel like the medical community sometimes thinks that they know my body more than I do. I live in this one I was given for the past 50 years, 24/7, 365, non-stop. I think I know this body better than anyone on the face of this earth. (Please understand I am NOT saying this for pity, I cannot stand pity, I am saying this to make a point and to help you understand what I am saying.)

To this day, my fight continues and this is where I decide to take action in a more positive way. I decided to NOT allow the doctors to just have full reign over my medical decisions. I decide what medications to take, I work WITH them to decide what will work best for me. I have also decided that NO ONE should EVER have to go through what I went through with this man. Yes, there are a lot of regulations and stipulations regarding medications right now, and some of them are a little over the top and stopping some of the people that truly need the medication from having access to it. That is a story for another time. Right now, this is about awareness, education and finding a research, and finding a cure.
In order to do this, I am hosting the 2017 Chicagoland Fibromyalgia & Chronic Pain Together Walks in Mokena, Illinois. Won't you join me in raising awareness for this disease? There are many openings for volunteers. The registration is also now open and we are still looking for sponsorship if you are able to sponsor!

1. I need volunteers and I have many positions available, this is also a great way for high school students to get their community service hours done for graduation credits! The link below will take you to a sign-up page and you can pick what is the best way for you to help.

2. If you are interested in becoming a sponsor, contact me by email at 2017chicagofibrowalk@gmail.com. There is a lot of information to pass on regarding this subject, to get the full information, please email me so I may get it all to you.
3. Donations for food, beverages, silent auction items, etc. are still needed. Please contact me on the Facebook link below or you can email me at 2017chicagofibrowalk@gmail.com.
4. Registration is now open... it is $30 per person and that will include a t-shirt and an award. When you get to the page, click on the upper right-hand box that says "join" and it will take you to the page where you can make your payment to register for the walk. This is a 1K AND 5K walk that we are doing. We are looking to provide food, a beverage and a bag of chips after the walk for every participant along with musical entertainment and vendors.
5. If someone from the medical community would like to speak about fibromyalgia for a few moments in the opening ceremony OR stay at the medical tent that is at the half way mark of the 1K & 5K walk, that would be greatly appreciated.

Volunteer sign up page
Facebook page for Chicago FM & Chronic Pain Walk
Registration

This is going to be super exciting because it is the FIRST TIME in Chicagoland! We all know how Chicagoans love to brag about our achievements, right? Let me give you a short list...

1. World Series Championship Winners 2016
2. Stanley Cup Winners 2015, 2013 & 2010
3. Home of the President of the United States of America 2008 & 2012
4. World Series Championship Winners 2005

Let's add one more to the list. Most donations given for a First Annual Walk in Chicagoland!