Wednesday, November 23, 2005

So The Doctor Said "Carly..."

"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

20 comments:

Karen Funk Blocher said...

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

Gaboatman said...

Carly
I'm sorry you have been diagnosed with Fibromyalgia, but happy you now know what has been bothering you. Now a treatment can begin. I agree with our friend Karen about you seeming to have the right attitude. Just know there are many out here who care about you and we will be here for you if you need to talk, or need help in any way. Yes, it's about time doctors stopped treating us like we are an irritating interruption of their enormously important day.
Sam

Tilly said...

Hello Carly,

So sorry to hear about the fibromyalgia. Sometimes people say it's a relief to find out the reason for feeling so dreadful but I don't know how I'd feel to have something like that spelled out to me. I know somebody who also had the Epstein Barr virus last year and it knocked them out for months. The doctors said it had certainly lowered her immune system making her susceptable to all sorts of ailments.

I hope there is a treatment for you which will enable you to shake off some the awful problems you've had to put up with.

Wishing you a Happy Thanksgiving.

Tilly x

DesLily said...

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/

Solitary Dancer said...

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

Unhinged said...

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.

Kat said...

I am glad they finally figured out what is wrong and you found out what healthy ways to get better. I love the butterfly picture. It is beautiful. Happy Thanksgiving Carly.
Love,
Kat

Shelly said...

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.

Tammy said...

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

Tess said...

Just wishing you Happy Thanksgiving and better days!
Tess

Sassy said...

((((((((Carly))))))))))That
"all in your head" stuff is so annoying and dicounting. Sorry to hear of your dis-ease, but I am confident you will deal with it and come out of the cacoon flying! BTW~Can we having Round Robin on blogspot? I'll miss is if we don't.
Blessings for a blamy happy Thanksgiving, Sassy ;-)

http://journals.aol.com/SassyDee50/SassysEYE

Stacy-Lynn said...

I am sorry to hear this girl. I know you will do well in finding ways to feel better! You are a fighter. It is always so nice to know it isn't "all in your head"!

Gorgeous butterfly pic btw...

Stacy

Judith HeartSong said...

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

Madmanadhd said...

There has been much discussion in several AOL journals about Fibro... hopefully some of them can provide you with some valuable insight and strategies. It is important to have a name to put to out maladies isn't it? For years I really did think I was insane and destined to wander the Earth a lost and hopeless fool. Until I fould a tag for my behavior and then could begin to make sense of the beautiful and unique individual I am (OK don't gag there).

Thanks for the photo of a butterfly. If I saw one here I'd first be looking for longjohns and a down vest on the little critter and then be concerned for its longterm survival. But this fortunate one you discovered simply has done what I have dreamed of for years... meandered over to the wonderland I call Berkeley.

Hey actually made another post in my blogspot spot. Still need some serious coaching on stuff like inderting photos. Time... time is the issue medear.

Here's the link.... ummm... I think.
http://mendingthedream.blogspot.com/2005/11/hmm.html

Michael

Steven said...

:-( 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.

Celeste said...

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.

Anna said...

I love how you find joy in the simple things, Carly. That draws me to you every time!! I pray that these new meds will help give you some relief. ((((hugs))))

love, anna

sunflowerkat said...

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}}}}}}

neo said...

check out beriberi Thiamine B1 thiamin deficiency and this is not an alternative theory or holistic dream this is a medical fact
the only thing rare about this disease is diagnostic recognition from what I have wittnnessed and i have wittnessed unfortunateley allot you may not of ever heard of this disease but it is unlikeley that you havent ever seen it.
it causes extreme fatigue
gi disorders
musculoskelatal disorders chronic pain and soreness or pain that comes and goes
fog head psychiatric disorders emotional disorders
memory disorders
in severe cases as if that isnt enough it causes degeneration of the nerves and thier mylier sheathe yes Motor Nueron disease MND manifestations can put you in a wheelchair quickly or over years time also causes heart failure B1 administration reverses heart failure quickly when a deficiency has brought it on this generally starts with swelling edema fatigue loss of libido out of breathe on exertion chest pain
early warning signs of Beriberi Thiamine vitamin B1 deficiency are one several or all of these symptoms mild moderate or severe fatigue anger irratability fog headed trouble with memory depression moodiness constipation and or heartburn these early warning signs can go on for years and be misdiagnosed as ADD CFS all kinds of emotional and psychiatric /nuerological illness bi polar autism ect
Thiamine vitamin B1(Thiamin) is not in the complete bloodwork B1 is not commonly checked for a positive response to oral administration is a clinically positive diagnoses according to text , i couldnt get up for three months from fatigue depression the first week on it i was up and about still pissed and depressed but awake my dad had what we thought was alzhiemers the second week on it his mental faculties returned i have a long list of healings from people because they are aware now of this serious disease including heart failure halted and reversed ,misdiagnosed autism scizophrenia ,MS ,ALS, RSD ect , The chemical Thiamine vitamin B1 Thiamin is as essential to your bodies ability to function as sunlight and water. It is water soluble,so is vulnerable to extreme change on a day to day basis
causes nueropathy of all sorts ect...generally effects the lower extremeities first but can effect throughout or start in the upper first it can effect anyone at any age infantile beriberi causes heart failure in babies,babies get diareha with it it only causes diareha in babies in children and adults diareah is a cause for it ,babies become hoarse and get a characteristic silent cry muscle wasting and heart failure
keep this post on all your posts with anyone with a disability the high stress of a disability puts people at risk for developing this condition if they havent been misdiagnosed in the first place !and it is a serious condition, a high thiamine diet along with supplementation of vitamin B1 (THIAMIN) the dose depends on the severity of the case my husband takes 3000mg a day plus a high thiamine diet this put him in the high normal range and it reversed his manifestations of heart failure and he had all of them, i started out with 500 mg a day and now take three or two plus diet
beriberi literally means the weakness or i cant i cant i was misdiagnosed for twety years and it just started to show signs of effecting my heart, it means the weakness or I cant I cant translated to english because of the crippling effects it has on its victims lives wether it hits the brain the nervous system always the GI seens to be efffected or has been the nervous system causes wasting nueropathy ect exactly the same as ALS in severe deficiency left untreated.keep this on all your posts please and send this info out even if a person is in a wheelchair from nisdiagnoses of this deficiency it is curable it takes six to twelve months for severe nueropathy to heal but the other symptoms will heal much sooner such as constipation deppression fatigue heartburn muscle spasms pain and soreness throughout caused by lack of (TPP) difficulty with swallowing throat spasms some of these symptoms will dissapear in a week. my father in law went from bed bound 24/7 to up and awake all day in two months and his irreversible nerve damage from statin drugs is reversing
my mother was crippled by this disease out of the over twenty people i know including myself who are clinically positive for this disease only two of them are alchohlics , because rates of occurence and populations effected are statistics and change with the times at this time this disease is only considered they say in alcholics they dobnt consider specail considerations such as pregnancy high stress prescription medications any overuse of diuretics including caffiene, hyperthyroidism, chronic illness chronic stomach disorders liver disease, chemotherapy and radiation, junk food binging, there is also a genetic type that they also say is always misdiagnosed because it is a specail consideration, so they say they only consider alchohlism but this disease is not anchohlism but they dont teach alchoholics about it either my two friends who had this disease because of alchohol were diagnosed with bi- polar and a combnination of acid reflux disease ect and given meds that exasperate this condition and yes it did damage, the word dr translated into english means teacher parasite might be a better fit for the modern practitioner from what i have wittnessed
so there is is my note
im new in this blogging but whoever is old hat here and can link this up all over please do it and keep it posted all over
butterflys are free to fly
we used digestive enzymes instead of antacids like the sweet papaya and text also recomends a B complex B6 and it is in the Bcomplex it is a diuretic and too much like any diuretic is toxic so we dont use anymore then 50 to 100mg of Bcomplex because of B6, we used twin labs 500 mg B1 and weiss brand that isnt a plug it is just what we used
avoid high fructuse corn syrup and do not take B1 Thiamin with barbituates or antacids as they will block Thiamine vitamin B1s absorption
this is not intended for medical diagnosis talk to a dr , thats my disclaimer Although this imbalnce is extremely serious and at best makes your life mildly dysfunctional and at worst causes psichal crippling or heart failure any eight year old who understands this disease can diagnos and treat it and it is a very serious and apparently epidemic disease from what we can see from research . the manifestations of it in our culture at this time are rampant,the causes are equally as common, this note is intended for awareness only look this up in med encyclopedia text look this up in many as you will get more info on each study
in accute stages its called wernick karsokoffs syndrome and causes speach difficulties gait changes paraylis of the eye nystagmus dillusions psychosis coma and death left untreated. accute stages according to text need treatment with IV or shots and then continued oral therapy diet ect
avoid high fructuse corn syrup which is in everything because this disrupts metabolism also
and a quick note B5 acts as an antinflamatory and i use 1500 mg for inflamation from an accident and it acts better then cataflam for me, i read that it is as good as steriods without the side effects and lack of b5 in the diet can cause infamatory conditions.
also Thiamine vitamin B1 (thiamin ) therapy needs to be kept up during the entire healing process for Beriberi where nueropathy weight loss and muscle wasting bright red burning feet pain and tingling munbness in feet loss of use of hand or hand wheelchair bound has occurred this takes six to eight months to heal but will revers and is curable.
medical response from what we have found is inept at best and hostile and deceptive at worst
if you would like proof of the ineptness go to any interactive dr patient site nuerological and heart or gi or musculoskeletal and type in a text book clear case from specail considerations and see if it is mentioned at this time it wont be , maybe this time nxt year it will be , Please Shine the light
take this silver lining take it in your own sweet hands and shine it when the night is burning red david gray
butterflys are free to fly

Hailey Harris said...

I just want to give additional helpful information for all fibromyalgia sufferers.

Fibromyalgia is a condition where you feel chronic pain in certain parts of your body; it is a muscular pain especially around the joints. There can also be centralized pain felt in the spinal chord, brain, neck shoulders etc. People with fibromyalgia generally complain of pain in the joints, but it actually is the muscles and the tendons around it that cause the pain, it can be excruciating sometimes and can be a continuous throbbing pain. People suffering from Fibromyalgia also show symptoms of depression, sleeplessness, irritable bowel syndrome, stress and many others, which are caused due to the pain.

Rid Fibromyalgia provides a simple process to helps you eliminate all your symptoms of fibromyalgia and enjoy living your life again. This will provides us the best and most effective solutions on how to rid ourselves from pain.

The Rid Fibromyalgia provides an eBook entitled “Heal the Body” that will teach you the best diet that will allow you to eat your way to wellness, it will also document which vitamins and supplements will target and reverse the illness, how to achieve pain relief through acupuncture, what exercises are safe and will work, and what type of medications may make you sicker, and what will work. This eBook takes a step by step approach in showing you how to rid yourself of the pain naturally so that you can take back your life.

We must know the symptoms of this illness. For us to know what would be the approach we will going to apply. Here's Signs and Symptoms of Fibromyalgia and steps to treat it naturally.

We must also be responsible and aware to the things to gain and cope up with this kind of illness. Eating nutritious food with regular exercise would be result to a better life. Here's Basic Tips in Coping Fibromyalgia.

If we say Fibromyalgia Diet, there is no specific recommended diet for fibromyalgia. But a healthy diet rich in vitamins and minerals can certainly help in coping with the illness. Magnesium rich vegetables are recommended for patient's suffering from fibromyalgia. Here's some information for you to help in Fibromyalgia Diet.

We must also think that vitamins are important for Fibromyalgia sufferers. This will give us additional energy and strength to kept a healthy living. But of course, you must be aware that not all vitamins are effective or directly gives you a good result. Find the best vitamins that would easily give a good response if your taking it. The best thing is your healed and keep your body healthy as possible. Here's The Benefit of Vitamins for us to know why vitamins are important for fibromyalgia sufferers.

Also feel free to view this video Fibromyalgia Help. It really gives good information for those who have Fibromyalgia and encourage not to give up because in every pain your getting through has a good solution in the end.

Here's Rid Fibromyalgia, For free info and helpful articles on fighting fibromyalgia.