Hello there! Thank you so much for posting your comment and sharing your thoughts. I am thrilled to know that you visited my blog. Sometimes I wonder is anyone reading this?!
Don't apologize for being bitter... I know exactly how you feel.
I've written a lot on my web site www.fibroworks.com about working with fibromyalgia. You might want to check out some of my essays. I went from working 65+ hours a week, down to probably 20 on a good week. I'm now back up to 40 hours, plus weekends, but I do a LOT of it from home. I'm lucky because I work for my boyfriend, so I can make my own hours, and he is very understanding about my condition. He actually looks out for me more than I do myself. Above all, you need to take it slow, don't overdo, and stick with people who will support you and believe you.
I was the opposite of you because I "knew" I had fibromyalgia, but doctors would not agree. Whereas you had a hard time accepting the diagnosis, I was actually happy that I finally had the diagnosis because it meant I could move forward (I was worried I had lupus, MS, or some other more life-threatening illness). Once I knew I had fibromyalgia, I was able to put plans in action and move towards rehabilitation. I use the term rehabilitation because there really is no cure or recovery, so we have to rehabilitate ourselves in much the way any disabled person would.
I would greatly enjoy communicating more on all the topics you've raised. We can continue to do so here, and I also run two groups... one on Yahoo called "Undiagnosed" (but even if you're diagnosed, you can join -- the focus is the difficulty in getting a diagnosis, and I started the group before I had a diagnosis, so the name stuck). And the other is on my web site http://www.fibroworks.com/ It is a forum, and I host personal fibro blogs on the forum for free.
The URL is http://www.fibroworks.com/board2 we need more members, and there are people in each group who are going thru the same things we are, so it's a great thing to do.
Thank you so much for getting in touch with me! Happy Thanksgiving (assuming you are in the U.S.!)
Don't apologize for being bitter... I know exactly how you feel.
I've written a lot on my web site www.fibroworks.com about working with fibromyalgia. You might want to check out some of my essays. I went from working 65+ hours a week, down to probably 20 on a good week. I'm now back up to 40 hours, plus weekends, but I do a LOT of it from home. I'm lucky because I work for my boyfriend, so I can make my own hours, and he is very understanding about my condition. He actually looks out for me more than I do myself. Above all, you need to take it slow, don't overdo, and stick with people who will support you and believe you.
I was the opposite of you because I "knew" I had fibromyalgia, but doctors would not agree. Whereas you had a hard time accepting the diagnosis, I was actually happy that I finally had the diagnosis because it meant I could move forward (I was worried I had lupus, MS, or some other more life-threatening illness). Once I knew I had fibromyalgia, I was able to put plans in action and move towards rehabilitation. I use the term rehabilitation because there really is no cure or recovery, so we have to rehabilitate ourselves in much the way any disabled person would.
I would greatly enjoy communicating more on all the topics you've raised. We can continue to do so here, and I also run two groups... one on Yahoo called "Undiagnosed" (but even if you're diagnosed, you can join -- the focus is the difficulty in getting a diagnosis, and I started the group before I had a diagnosis, so the name stuck). And the other is on my web site http://www.fibroworks.com/ It is a forum, and I host personal fibro blogs on the forum for free.
The URL is http://www.fibroworks.com/board2 we need more members, and there are people in each group who are going thru the same things we are, so it's a great thing to do.
Thank you so much for getting in touch with me! Happy Thanksgiving (assuming you are in the U.S.!)
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