A fibromyalgia awareness living in fibrohell

I Failed

I failed my mission. I am not going to beat myself up over it because I did not do it purposely. I started out with only the best intentions but this damned beast within me prevailed although I am not ready to surrender. Just a speed-bump.

I really wanted to take care of John yesterday while he was sick, and I started out checking on him and making sure he had everything he needed. By lunch time my body gave and I could no longer commit to what I so badly wanted to do- just give back to my husband. God bless him -he is one in a million for he was ok taking care of himself as I lay on the sofa for the rest of the day.

I am crying as I type this because these are the times I just want to say "Just shoot me!" I guess its a good thing I never had children of my own. I am thankful that I have Jennifer and now Payton who I so want to be there for. I also cry when I think about if I had to take care of Payton for one day, could I? Ok now I am really sobbing.

I did not choose this but I am still going to try to use it to my benefit and I am desperately trying to spread the word about Fibromyalgia Awareness. I am still trying to plan something for Fibromyalgia Awareness Day which is May 12th. Don't have it all figured out yet but hopefully I will have details soon.

FIbromyalgia Awareness Video

Berlin Student Raises Awareness of Fibromyalgia

I had to put this article here to applaud Brianna for what she is doing.

School projects abound, but I was intrigued by this one that Berlin resident Brianna Tulin has undertaken. It appears to have taken on a life of its own and gotten attention from a national organization.Brianna's mother has been afflicted with fibromyalgia for many years and this winter she decided to spread the word about the syndrome. She set up a display in the lobby of her school, the Solomon Schechter Day School in West Hartford, on fibromyalgia. When she and her father, Jay, asked state Sen. Donald DeFronzo if there was something the state could do he promised to introduce a bill to the legislature designating May 12 as Fibromyalgia Awareness Day. That bill is pending in the legislature, here's a link to a page where you can track its progress and Brianna said she plans on testifying at an upcoming hearing on the bill. Here she is with her father outside their home the other day.Her efforts caught the attention of the National Fibromyalgia Association. The group highlights efforts its members make to spread awareness of fibromyalgia and it has done this with Brianna. Here's a link to what they've done."I had no idea I would be noticed by anyone," Brianna said about the attention her project has received. "I was shocked but pleased."Sandy Bennett, a spokeswoman for the NFA, said she learned of Brianna's efforts because they contacted another association staffer who deals with advocacy issues. Bennett said she was particularly impressed by Brianna's youth. "She has done all of this while dealing with the challenges of growing up with a sick parent," Bennett said about Brianna in an email to me.Brianna said her mother was diagnosed with fibromyalgia in 1990 and suffers from other health problems as well. These have rendered her bedridden for the past couple of years. Brianna said the project was done for a school assignment. Part of the program at Solomon Schechter calls for students to do what is called in Hebrew a "mitzva," which Brianna said can be translated into English as either a good deed or something commanded by God.She said the project must be something that raises people's awareness about something or solicits their help dealing with a problem, like making donations. Brianna said she thinks awareness of fibromyalgia is limited and chose to do something on her mother's disease because of that. "It's pretty plain but it has everything you need to know," Brianna said about her display at school.She said many people she knows, including fellow students, knew little or nothing about the disease. "People think fibromyalgia is just some random disease that was made up," Brianna said.

Lisa's Story

Click on Lisa's Story above to view a video of a husband's plea for Fibromyalgia and Chronic Fatigue Syndrome awareness. People are just recently hearing more about Fibromyalgia but it is not yet understood. Certain doctors will ignore giving this diagnosis because they think it is a mental condition, which it is not. Fibromyalgia is real and it's time for people to start learning about it. There are so many undiagnosed people that are completely frustrated because they don't know what they have or their doctor will not acknowledge it. The average patient has to go through between 4-7 different doctors before actually getting an accurate diagnosis. I am fortunate to have a good doctor now who understands and works with me to help me be as comfortable as I possibly can with my pain. Four years ago I left my doctor of 15 years after he told me it was all in my head. I literally ran out of his office crying. I vowed never to go back to him again and he knew why. Just because he couldn't figure it out and my test results said I was fine. He sent me to a Rheumatologist who diagnosed me with FMS. Even after he recieved this diagnosis, he failed to acknowlege this because he was an "old school" doctor and FMS has just recently become an actual listed diagnosis by the AMA.

This is part of why I am doing this blog, not for sympathy, but for awareness. Especially if you know someone with FMS. Just because you don't look sick doesn't mean you don't feel like total crap.