Tuesday, October 11, 2011

Venting About Fibromyalgia Awareness!

Hello friends,
*WARNING* I'm gonna VENT! And before anyone writes me... NO I'm not downplaying breast cancer or it's seriousness. My grandmother died a horrible death due to breast cancer and it's something I don't take lightly.  However, for the purposes of this particular post, I'm using the difference between the recognition and money breast cancer awareness and research gets verses fibromyalgia recognition and research.

On with the post: Oh! and just for you 'n me, I've put a new playlist on the blog of some of my fav songs if you want to listen while reading. Enjoy friends :-)

Ok, NOW..on with the post:
I want Fibromyalgia to receive as MUCH attention and awareness as breast cancer or autism or freak'in ED for crying out loud!!!! I am SO TIRED of much of the medical community not even recognizing Fibro as a legitimate disease or condition much less the public at large. Yes, yes Lyrica commercials have started the process of more recognition and information, but please.... if we could garner the same support as the breast cancer people.. WOW! what a difference we could potentially make!

Side Note: I just have to say .... if after ALL THESE YEARS and millions (if not billions) of dollars going to breast cancer research they STILL have not found any cure I have to wonder... do the powers that be really want a cure? Seems like alot of bucks and no results.  The meds would after all, be discontinued and all the partnerships potentially right? I'm just say'in. What's the real deal? These women deserve better!

Ok back to Fibro.

Guys, I was browsing a website the other day and the topic was injections for say the flu and what not. A girl posted about how after taking a popular injection against HPV she ended up with Fibro at 25 years of age. Now the post was a vent and she was quite upset, but what she had to say had some weight to it. The thing that just IRKED me to no end was the comments she received. I kid you not, one comment was about how "Fibromyalgia is nothing but lazy fat persons disease so they can stay high on narcotics all day and collect $1000.00 a month from the government" and another was how it was a "fantasy that can't be proven so doctors just call it Fibromyalgia when they can't figure out what's wrong".  WHAT???!!!!! (And just so you out there know.... the likelihood of anyone receiving disability checks for Fibro is slim to none. You have to prove you have other illnesses caused by or in conjunction with Fibro (such as RA or heart problems etc...) to even be considered for disability. DO THE RESEARCH BEFORE MAKING REMARKS LIKE THAT. Here...go to Allsup  for starters. They at least give PWF's a fighting chance.)

I'm thinking I want to somehow organize a fundraiser walk, or a rally for people to come and raise awareness and combat some of these long held mental strongholds in the community about something that is very real, very destructive, and needs more attention. I dream of having the media ask US questions for a change and do stories on our situation. I want freak'in purple ribbons to be just as recognizable as the pink ones. Over 6 MILLION of us and counting in this country alone suffer every day with no real hope for any legitimacy on the medical front any time soon. For crying out loud we AT LEAST need a legitimate way to TEST our tissue or blood for Fibro somehow! AT THE VERY LEAST!.  This has gone on farrrrrrrrr toooooo long.

I just needed a space to write down what I'm thinking and feeling today. It's been boiling inside for the last year or so and I needed to vent it.  Also.... I think writing things down sort of cements ideas. I think I'm seriously going to look into finding a way to organize a rally and/or a fundraiser walk somehow.  I'll keep you posted.

In other news: 

On my last post about weight gain I was pretty hopeful about some ways to combat the problem. Upon doing some more research you know what I found???? Much to my dismay.... there are lots, and lots of people taking Lyrica and gaining some serious weight because of it. I know I've gained 35 pounds in 4 years since being on it. Un...real. I've NEVER put on weight like this before nor had such a heck and tarnation time of trying to get it off! Look at just this one forum alone at Medical News Today. I was blown away! But, I finally had some answers about just what the heck my body's going through and why. It took some of the guilt and shame away for me.

I determined to try an experiment. (DO NOT TRY THIS WITHOUT CONSULTING YOUR DOCTOR).  I took my Lyrica capsules and dumped out 1/2 to 3/4 of the medicine so that my dosage was down from 150mg to 50mg so I could start getting some of this weight under control. I dropped about 5 pounds in the first couple of days (no change to my eating patterns) but the pain was excruciating and I was down for the count the whole time. Part of it was the reduction in the amount of medicine and part of it was withdrawl symptoms. Oh yay..lots of fun. Finally after about a week and a half I went to my husband and was crying. I said "I'm darned if I do and darned if I don't." "If I reduce or stop my medication the pain is excruciating and I'm almost bed ridden, If I keep taking it, I gain weight like crazy and I can't risk the other problems that will come with that" I was soooo frustrated. He was great about it though. He hugged me and told me to take my regular dosage of Lyrica and have some functionality and we'd find a way to fight the weight somehow with more exercises, maybe going all vegitarian, or a different medication or something. For right now until my next Dr. appointment that's what I'm planning to do.

Well friends, that's it for today. Just some random thoughts and ideas. Thank you for your patience and for listening.  Remember.... You are NOT alone.

Here's to YOU, Here's to US,
Sherri

4 comments:

El said...

Hi there! I have had fibromyalgia for quite a few years now, and yes it is ridiculous the little bit of press we receive. I attempted to do an awareness/fundraising bakesale when I was in high school, sponsored by a teacher and fellow fibro sufferer, only she backed out because she didn't want people to know. HELLO?!?! That is probably why awareness is so low for us. She was ashamed of having fibro. It's not like you contract it from someone, and we are not contagious. And we are far from lazy. In the city I live in we have had 3 major events in the past 3.5 weeks having to do with breast cancer and I would love to see that kind of support for fibromyalgia so when I say, "Hey, this is what I have" I won't receive blank stares.---Just to add to your venting.

Carry on and stay courageous (<--- because you already know how strong you are)

Sherri said...

Thank you so much for writing! I loved reading what you had to share. Unfortunately (like the teacher you spoke of) there are so many of us out there that have been shamed into hiding our illness or have been told it's "all in your head" to the point that we've stopped fighting to prove what we have is real. It's a dirty shame what happens.

I could COMPLETELY relate to what you said about the blank stares when you tell people you have Fibro. There is so much work to be done...

Thank you again for writing. I'm glad you stopped by!

The Patients Voice said...

This is really interesting

would it be possible to use it as a guest blog on our site here

http://www.patient-experience.com/

email me at belinda.shale@healthcarelandscape.com if you are interested

Anonymous said...

Just have to share this. I was watching the other day when Dr Oz showed an MRI (or pet scan)of a normal brain and the brain of a fibro sufferer and to my amazement it was different. It showed that there was less blood flow in the part of the brain that causes pain. I couldn't help but cry. There it was!!!! I feel hopeful that it could be a diagnostic tool.