Saturday, August 30, 2008

Calling All Fibro Heroes!! Speak Up and Be Heard!!

Hello Everyone,

Yesterday I had an interesting situation come across my path and I want to tell you about it in order to encourage all of you to speak up and be heard.

I had a mortgage lender ask the following question of me: "If you are unable to work a "mainstream" job, then how can you walk up and down the stairs in your home?"

WHAT ?????!!!!!

I felt lead to write the lender a letter regarding their question. I expressed my confusion regarding how being able to walk up a stairway qualifies a person to be able to work a "mainstream" career. There are many, many people who can walk a flight of stairs and are definitely disabled in other capacities! Since when does being able to accomplish a flight of stairs become a qualifying factor in disproving a disability????

First of all, asking how I (or you) manage my (or your) physical limitations is a personal question and really a matter of whether or not I (or you) feel comfortable sharing it with any person. It's intrusive and bully"ish "to be frank about it. It has nothing to do with establishing a medical history such as the 3 year documentation I provided to this lender to include my doctor's name and contact information, my insurance claims, all of the documented doctor and hospital visits I've had before being diagnosed correctly, and the medications I currently have prescribed to me. These are documented and show a medical history. How I (or you) choose to process and manage my (or your) symptoms has nothing to do with "proving" an incapacity to maintain a "mainstream" career.

Because of the extremely good customer service that our loan officers have given to our family, I chose to go ahead and describe how I manage my "stair situation". My goal in doing so was to educate the lender so that in the future, should they encounter another person living with Fibromyalgia and/or Allodynia, they have a better understanding of the syndrome(s) and its effects.

I'm also choosing to share this with you, my readers, because talking about how we "deal" is very important. We need to talk about it and legitimize one another so that as a united front we can make a difference in how we are treated in society.

The fact of the matter is that there are times I must use a cane to walk up and down my stairs, times when I sleep on our couch because I'm too weak to manage the stairs, times when my husband is on orders (he serves our country in the United States Military) and away from home, that I have our littlest girl sleep downstairs with me so that I can make sure I am able to care for her during the night if she needs me, and there are times when I "cat walk" up our stairs using my hands and feet to get me up there.

This is the truth of Fibromyalgia/Allodynia for me. This is how it impacts me regarding just the stairs. I expressed to the lender that the stairs are only one part of my world that I must take control of and manage. There are so many other situations and factors along with dealing with stairs that frankly are more important and worth much more attention. I also expressed the frustration that people living with Fibromyalgia and/or Allodynia face because it can't been "seen" and we often have to jump through hoops in order to "prove" we are ill and need help.

Ladies and Gentlemen, Fibro Heroes, WE HAVE TO SPEAK UP AND BE HEARD! It's a very real fact that much of society, and dare I say even the medical community, who are uneducated and have erroneous mindsets about the symptoms and physical limitations of a person living with Fibromyalgia and/or Allodynia. WE MUST EDUCATE THE COMMUNITY in order to link arms and promote Fibromyalgia and/or Allodynia awareness and education! I cannot emphasize the importance of making sure that you are a voice and a potential hero for the Fibro and/or Allodynia community. YOU CAN MAKE A DIFFERENCE!

Until we find a cure I want to encourage you to take part in putting Fibromyalgia and/or Allodynia "in the face" of society. Wear or display an awareness ribbon, talk about your symptoms and pain management, fight for your quality of life, participate in fundraising events or awareness events, write a book or a blog about your experiences, be a voice regarding the difficulty in qualifying for disability benefits, demand (politely but firmly) the same rights and respect that other disabilities are shown in the mainstream workforce community and offices, read up on current issues regarding the syndromes and don't shy away from those who are sceptical that you are really fighting an illness. The more silent we are, the less chance we have of creating a momentum toward finding help and a cure.

Together we CAN make a difference! As long as we are living with Fibro and/or Allodynia we might as well DO something productive about it and take ownership of it. Why not? There are countless other awareness es that are not shy about raising awareness and asking for help, and neither should we be shy about OUR syndrome and the reality of the devastation it causes.

Fibromyalgia and/or Allodynia effects each person differently. One person may be completely bed-ridden for the most part, and one person may be able to function well enough to maintain a mainstream career. It just depends on each person's body. These facts deserve to be legitimized rather than be a reason to promote skepticism that it's "all in our head" or that we are not truely ill. No, we MUST raise awareness and education about what it's REALLY like to live with Fibro and/or Allodynia.

Speaking of what it's REALLY like, .... the commercials for Lyrica come to mind. Now there may be many, many people who are able to function in a much more capable capacity such as what is shown in these commercials and THAT'S GOOD. It's VERY good. That's what we want. However, the commercials only show women with Fibro and they don't give enough attention to the extreme symptoms that many others living with Fibro experience. AND.... what about the MALE population who live with Fibro and/or Allodynia?????? It's NOT good that often times fibro awareness tends to lean toward the female community just because there are reports that more females than males live with the syndrome. No it's NOT good at all. Men deserve to have the same support and the same dedication to awareness and help that females get. I very often find that the male population of Fibro sufferers is silent and don't talk about it very much. We MUST make a comfortable and accepting environment within our groups to accommodate the very real and unique experiences that men go through while living with Fibro.

So today I'm calling on everyone to look for opportunities to educate those around you that you have influence with and create awareness within your community. Let's work together to legitimize one another and become a cohesive force willing to speak out and find ways to fund or contribute to finding a cure.

I'm right there with you...and I care very much about the Fibro/Allodynia communities.

Here's to your success!

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