"MY illness is due to my doctor's insistence that I drink milk, a whitish fluid they force down the helpless babies."
-W.C. Fields
So the doctor said to me, "Carly, you have Fibromyalgia." After months and months of feeling so tired that I could barely keep my eyes open, forgetting things that were a part of my regular routines, having my legs ache so bad every night , that at times crying was really the only thing making it feel better, and the sudden and frequent onset of those pesky stomach spasms, I had a name to put to the affliction. The worst part of all these symptoms was thinking that it might have been "all in my head." After I was diagnosed with Epstein-Barr in 1995 and then losing my mind in 2000, my doctor would put all the things occurring to my body down to those two maladies. Uggg. Great, all the pain I was having was because I was insane. Really, really nice.
So today, when my new doctor looked at me as said "you have Fibromyalgia," I hated hearing the words, but at least I knew that I could actually listen to my own body and trust what it was saying, and it was saying, "Help me." The bouts of insomnia, the sleepwalking last year, the 26 week headache, my knack for spelling the word (nad) instead of (and) my extreme forgetfulness, the pain in my legs and the worst symptom of all, the stomach spasms, now have not only a reason for being in my life, but now I can fix them.
It's unclear what exacerbated what. It could be one of my setbacks with my Epstein-Barr that set off the Fibromyalgia or it may have been some of the extreme stress of a few years back, either way it is here, and it will be sticking around. It is a chronic condition, but far from the worst thing that could ever happen to me. I simply have to do some things in order to remain the cute, charming, talented writer /photograher I am. LOL. Like get rest when my body says so, not when I think I can do it all then make up the sleep difference later.
I have a huge supply of new medications to help with the pain and fatigue I have been enduring, plus some others for those infections that refused to heal, and I have a whole lot of research to do to help myself from the inside out, like a better diet and some vitamin supplements. The doctor did say that she would now begin to watch for...YIKES... Lupus. That is a frightening prospect, but I know me, I will forget that word in a couple days and I will focus on the plans I have already made. Starting with listening to my body and never letting a doctor treat me like I am an intrusion into their day. I am the patient, they are there to help me stay healthy. Period. I will keep my end of the bargain if they will.
Also today to my delight, I saw a butterfly. A butterfly in autumn. Regardless of whatever else happened today... seeing it made the simple act of getting up worth while. :) I am so glad I took my camera to the doctor's office, I got some good photos there, and I got the picture of the beautiful butterfly while I was on my way home. All in all...it was a very good day. :)
-OndineMonet
"Autumn Visitor"
Hayward, California
November 21st, 2005
12:20 PM
Wednesday, November 23, 2005
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11 comments:
Oh, dear Carly! It sounds as though you have exactly the right attitude for all thos. I'm proud of you! And it must be a bit of a relief to finally have a better explanation than you had before.
Karen
Hi Carly.. wow.. I hope knowing relieves your mind. I do know the feeling that it's "all in my mind" and that scares the heck out of me. So.. do what the doctor says, and live in the "now" .. it's all anyone can do.
We'll all be here keeping tabs on you! Alone you aren't!
I hope you have a good Thanksgiving tomorrow..
http://herethereandeverywhere2ndedition.blogspot.com/
http://journals.aol.co.uk/deslily/HereThereEverywhere2/
Wow, fibromyalgia? It will be OK. Why do I say that? Because once you know what you're up against you can take charge and find out the best course of action for you. Knowledge is power and with the diagnosis you now have power.
Hugs my dear friend. I am always here if you need me.
Have a wonderful day.
Deb
Hi, Carly.
I'm so sorry about your diagnosis, but I see that your attitude is a strong, healthy one. Fight to keep it that way, okay? Attitude can make all the difference in the world.
I'm still around. I had planned to go on hiatus just before all the J-Land crap ... so that's part of the reason why I don't yet have a blog. The other reason is that I have little time (and energy) to devote to learning the new format at Blogger.
Ah'll be bahk. Pinky swear.
My second best friend and writing partner has had FM for close to 30 years now, among a host of other ailments and conditions (she was abused as a child which is likely what brought about the FM in her 20s), including clinical depression and migraines. One thing she does, when she's able, that has helped a bit, along with diet, etc, is reiki. Not sure if it would work for you, but something to consider, perhaps.
Anyway, it sounds like you've got a good doctor looking out for you now. Keep the positive attitude and you should be okay.
Carly, I wanted to first say thanks for the bet with Sam :) I love to take pictures, especially this time of year. This picture is awsome! I'm sorry for your diagnosis, listen to your body it tells you what you need and get other opinions and research. I have ALS and I've managed my own health and I am doing great.
Tammy
http://mylifeasawarrior/blogspot.com
Just wishing you Happy Thanksgiving and better days!
Tess
Take good care of yourself Dear Carly...... I am sorry for all of this but keep hold of that positive attitude and you will get through this with a little help from all your friends.
Much love, judi
:-( fibromyalgia
I saw a wing worn butterfly this morning. Took it's portrait and then thought of you. It's amazing how with such damage these little critters can still fly.
My sister wa diagnosised with Fibromyalgia after she was almost killed in a car accident. It is very important to pace yourself. She says water therphy is terrific.
Carly...you are a survivor. You have battled and overcome other obstacles....and you'll do it this time too. You have the spirit!!!
{{{{{{HUGS}}}}}}
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