Thursday, May 22, 2008

Today's a different blog entry...

Well today I am blogging for a different reason. Some of you might know about my health problems. I suffer from Rheumatoid Arthritis, Fibromyalgia, liver disease degenerative disc disease (back) and spondylosis of my neck. I have spent the last 3-4 years of my life trying to feel normal again, I have recently come to the conclusion that this is not going to happan and my definition of "normal" has changed. I have a blogland friend Denise at Couture de Papier who has been brave enough to share her story. Stop by her blog and see her "therapy" and say HI! This inspired me to share mine and hopefully "enlighten" some who are still in the dark.

It is sad for me to find people who have the disease, but sadder is the fact that so many peoples don't believe IT IS A DISEASE. In the past so many Doctors used it as a "wastebasket" illness. What I mean by this is they didn't want to investigate the causes of the illnesses or couldn't find the reasons for the illness, or insurance companies wouldn't cover the tests or treatments for a misunderstood undocumented medical illness such as fibro (what we call it for short). I was one of these patients.

I was probably ill for many years but was unaware due to the fact that our bodies are such incredible machines. I had been pregnant or breast feeding my babies for 7 years and my body was working for them. Once I stopped breast feeding Max (actually he weened himself at 13 months, broke my heart) my body fell apart. My body was shutting down on me. I was a wreck and just figured I was exhausted from being a mom of 4 (15, 5, 3 and 14 months), I felt crummy all the time, migraines almost every day, depression (worse than usual), chronic fatigue, you name it, I felt it. I can remember the exact day my life changed completely. It was the 4th of July, we had gone to a Carnival type celebration up north a few hours away from home. We spent the afternoon and evening there for the fireworks. It was no different than a typical day for me & my body, I felt crummy, even more so from walking all over and chasing the kids around. I began to get a migraine, but I didn't want to ruin the good times so I stuck it out. The following morning I was in excruciating pain from head to toe, even my fingers hurt, I felt like I had been run over by a truck. I knew I needed to find out what was wrong with me, I could not live like this and take care of my family.

Fibro is a very mysterious disease and mimics several other illness but has no definitive test to determine if you have it. It is very hard to get a "official" medical diagnosis. After a few tests turned up negative and there was no evidence of other diseases, I was given an unofficial diagnosis of "well it must be fibromyalgia", I was told "go home, change my diet and lifestyle and come back in a year". Of course I was not having that, see this Dr. was not interested in me or finding an answer to my problems so he just "tossed me into that wastebasket". Several Dr.s later I was referred to a Rheumatologist who ran a lot more tests and seemed genuinely interested in my ailments, finding an answer and treating me. He discovered that I have Rheumatoid Arthritis (an inflammatory disease that "attacks" your own healthy cells). Fibromyalgia is usually a post-traumatic disease, meaning it is triggered by an event or illness. Several people who have car accident or similar traumatic events later acquire fibro. I had Rheumatoid that triggered my fibro. So not only did every joint in my body hurt, every muscle ached too. I remember calling my hunny and saying sort of gleefully (not that I had it, but that I had FINALLY after almost a year had an answer and a diagnosis) "I have Rheumatoid Arthritis!". He said "why do you sound happy about that, it's horrible and untreatable" I replied "I am just glad I have answer, it's not all in my head!" We could now treat the disease...I thought. I have tried several different medications for my rheumatoid arthritis with not much help, I have liver disease also (not from alcohol), so I am very limited to what I can take. Your liver filters everything that goes into your body and mine couldn't handle most of the medications. I am nearing the end of my rope as far as current treatments available, however, there are a lot of new treatments on the horizon, so we will see.

The medical community finally "recognizes" the Disease Fibromyalgia and there are some medications available. Insurance companies are recognizing it too, some will cover these medications. There is still a lot of medical research to be done and now there are even some support groups that use a wide range of alternative therapies (acupressure, acupuncture, massage, aromatherapy, herbal & nutrition aids...etc.) Convincing our family and friends is what is still a problem. Many think "it's all in out heads" or "they are just lazy", I've heard several other statements that are all untrue. These words can hurt as bad as the disease. Support and understanding is what people who suffer from fibro need the most. I hope none of you ever have fibro or know someone who does, but if you do, PLEASE extend your heart and hand and be understanding. I was heartbroken to hear of Denises' so called friends who had abandoned her at her darkest hour. I am very fortunate to have an amazing lover who is very understanding and sympathetic to my illness and limitations. I am blessed with a family that is supportive and understanding too. I could not imagine having to go through this alone.

Frida Kahlo was thought to suffered from Fibromyalgia, among other things. It was a driving factor in a lot of he artwork. After a bus accident at the age of 18 she endeared more than 30 subsequent operations to her spine to try and alleviate her pain (and this was in the 1920's and 1930's when surgeries were barbaric compared to todays standards). Many of her works reflects the pain and anguish she suffered, not only from her physical ailments but from her broken heart caused by her unfaithful husband. Frida painted, that was her therapy, her outlet, her voice. Art guided her through her pain and anguish. During periods of immobilization in a plaster corset, she used a special easel with a mirror that attached to the canopy of her bed so that she could focus on herself. She said she painted herself so much because that was who she knew best. I am inspired by her courage and the courage of Denise and others who suffer from fibromyalgia. I hope and pray that Fibromyalgia and other chronic diseases can be treated into remission without detrimental effects on the mind, spirit and soul. I believe the expression of oneself, be it through art, cooking, singing, volunteering, dancing, what ever brings you joy, is the best medicine of all. So self medicate...paint, cook, sing, volunteer, will feel better for it!


Couture de Papier said...

Wow! Thank You I am honored! Interesting about Frida God knows how many other women in history?!!
PS The group was A Course In Miracles,
I discovered on my years ago computer there were many abused!!

kc_froglady said...

What a wonderful post from a fellow FIbro sufferer. This is not a disease I would wish on anyone. I can relate so well to the finally know and finally being validated that it wasn't in my head. I have suffered a long time and there are many different ways it affects people. I pray too that insurance companies will start to cover more of the cost of the treatments that work and on finding treatments that work to alleviate the symptoms we suffer. I dream of one day again being pain free!

apeystar said...

This is such a great blog entry. Unfortunately I do have a couple close friends who live with fibro. I think that the spoon theory can help you, and others with any chronic illness try to explain to the ununderstanding people, I've used it to help explain my bipolar disorder.

Simone said...

Well written. Its funny I remember watching a movie on Frida but I don;t remember if they ever said what caused her illness.

It is so important that we share our stories, it really helps. Thank you.

Blog/swap Love

Debb said...

Hi n ice to meet you,I have sign you up for the swap . Do you want to have a internatuiral swapper or just the states .Let me know.Too I have Rheumatoid arthristis ,fibromyalgia,thyroid,and alot of hot flash, as you get older your body goes. Myhusband told me I be in a wheel chair soon. But if I walk and kept up with the grandchildern I think I make it past the wheel chair. They are 2 boys 6 &7 and the 6 year you have to watch all the time. He just love to do everything. Will I guess I talk to long. Have fun with the doors.
love Debb