03 Dec We Need You!
100 is our goal! There are 10+ million people living with Fibromyalgia in the USA and we need 100 people to contact me ASAP. I will tell you why later.
I was exhausted from asking questions, researching and seeing doctors for my chronic pain, fatigue and cognitive impairment issues. Doctors told me I was getting older, was depressed, needed to control stress, “everyone experiences pain at some point in their life”, they told me, they said “lose weight”, they didn’t think I had Fibro, they even suspected cancer. At one point, I secretly hoped that the stigma of fibromyalgia being a mental health disorder was true. I figured, if true then at least I had a chance of making myself better. What is going on with my body? I have a family to care for; a mortgage to pay and I don’t have time for this. I desperately wanted to figure out how to get better fast. I met with several doctors to find answers; I no longer had a Primary Care Physician but a team of Doctors that consisted of a gastroenterologist, rheumatologist, neurologist, ophthalmologist, dental specialist and an oncologist during surgery. I was waiting for a magic pill, a therapy, someone to tell me how to once again be that person who had a photographic memory, took care of everyone and single handedly fixed any and every obstacle placed in my path. Almost 9 years later and I am still waiting. I was at home more than I was at work. I purchased short and long term disability coverage, life and credit card insurance. I was preparing myself for the day that I could no longer work and you know …
Today I consider myself lucky because most days I can go to work and I have been blessed with supportive and caring family, friends, co-workers and a Fibro community that I refer to as my Fibro sisters & brothers. But what about others who do not have the same access to medical care or the resources to get help? What about the others that have not only lost who they once were but have lost their employment, family & friends to chronic illness. “In sickness & in health” are mere words until you are personally impacted by chronic illness.
There are many terrific groups doing different things to help advance our cause. Some are focusing on awareness and/or research. I am appreciative of all the scientists, doctors and advocates; yet I continue to hear horrible stories of how chronic illness destroys so many lives. I hear stories of people contemplating suicide due to the unbearable pain; I hear stories of people not eating for days because they are bedridden and do not have a support system; I hear stories of people’s dreams and goals coming to a halt because fibro has stolen who they once were; I hear stories of people leaving their doctors office in tears because the science has yet to be discovered and the medical community does not know how to help us.
All of these stories make it clear to me that we must be more aggressive and try different approaches. So I decided to take action and form the Fibromyalgia Care Society of America (FCSA). I am not wealthy; I have a full time job; I am doing this because we need to stimulate change in how the fibro community is treated. Family, Friends and Caregivers WE NEED YOU TOO. There are millions of us living with fibromyalgia and we need to be a team. Together we will not only make a difference, I assure you working together we WILL have an impact.
The FCSA is committed to the highest standard of care and services that also promotes equality in care so that everyone living with fibromyalgia is able to get care regardless of their socioeconomic status and geographical location; see http://fibro.org . Living with pain, and not knowing why, can be incredibly frustrating. Millions of Americans live in the limbo of not understanding their mysterious persistent pain symptoms and takes an average of more than 2 years to get an accurate diagnosis of fibromyalgia. Why is there such a large gap between talking with a doctor and getting a diagnosis? How can the gap be narrowed? These are answers we need to get.
One of the greatest challenges we face is the lack of awareness. There are millions suffering yet chronic conditions are difficult to market and that’s why the FCSA motto is “PATIENTS FIRST” and the plan is to turn awareness into action. This lack of awareness exists in the medical community too. We are taking the necessary steps leading in the development of the Standard of Care while the scientists figure out more about the causes and potential treatments.
Back to the 100; we have lofty goals and to activate these goals we need help. To create the Centers of Excellence (COE) to develop Standards of Care we need to do two things quickly.
- Identify people living with Fibromyalgia & share
- Raise Money & invest in our future
Identifying people living with Fibromyalgia will build the community of advocates and numbers do matter. Numbers help make fibro a higher priority for research grants; numbers are important for Capitol Hill appropriations; numbers are important to the bio-pharmaceutical companies and finding others like us will provide the conduit for supporting each other.
Raising Money is necessary to fund the COE and the other programs we are establishing.
We need 100 people (or more) to step forward to team up with the FCSA now. You can:
- Organize a Walk in Boston, Chicago, DC, Albany, Jacksonville, NYC or where youlive. We want to make the loudest noise and largest impact in May 2016-National Fibromyalgia Awareness Month. The walk does not have to be a Komen size; it can be 100 people or 25 people who care
- Organize a local fundraiser; bake sale, raffle, barbecue, battle of the bands, bowling, whatever you like
- Walk a mile, run a 5k, a marathon, ride a bike for FCSA
- Write a letter/email to your friends & family asking them to support our efforts and to reach out to their contacts
- Ask the local golf club if they will consider FCSA as a beneficiary for their club championship.
- Check with youemployer to see if there is a corporate giving program and/or a matching donor initiative
- Find a friend who will take the lead
We will provide tools and support for all of the above. But first let’s talk real soon. Please send me an email, call, text but please get in touch. We need each other for sure.