Tuesday, June 28, 2011

This Is What I Want

I had 4 majors in college. Hospitality Management, Business, Journalism and the one I actually got the degree in, Interior Design. As you can see I was a bit indecisive. And at my mere 34 years of age I have had 3 careers. Yes, I did work in interior design for the first few years out of college but was sorely unprepared to launch a full-scale construction effort to build a name for myself in a field that I enjoyed as a hobby, but did not like making a living at. In all honesty I will admit, I gave up. Took a job in cosmetics and built my career there, a glutton for retail punishment, clearly. That career carried me, though, through numerous pancreas attacks, CFS and Fibromyalgia until I finally had to lay down my makeup brush and call it quits after the strokes last year. And nobody was more surprised than I to find my 3rd career is a Fibro blogger and awareness campaign founder. It really did sneak up on me and took me by surprise, my frenzy and passion fueling the fire burning in the pit of my stomach. Urging me forward faster than my feet could carry me. I have had Fibromyalgia for 6 years now, and it has destroyed my life and made it a living hell. When I started blogging and communing with other Fibrates I found so many out there fighting the same fight, in many different ways. So many thinking they are alone, and quite frankly crazy, because Fibromyalgia will make you believe that about yourself, if friends and family and doctors don't beat it to the punch. So many abandoned by their spouses and children and friends and family and judged so harshly, oh so harshly! 

And I got so mad, fueled by a Prednisone furnace bubbling and spewing the steam and smoke of rage and anger. This just was not right! I had a hell of a time getting CFS into remission and the pain, fog and insomnia of Fibro under control (most of the time). But the advantages I had in my battle were not a given to every other patient and I was able to see with blaring objectivity what a true and horrific nightmare having Fibromyalgia is in the USA today. And then I met some friends across the pond, and in many other countries, and found it was even worse there! Awareness is pathetic and patients are blamed for their illness. There is very little groundbreaking research or real scientific knowledge about Fibromyalgia as it spreads silently, soaking up and completely absorbing thousands of millions of lives. For not only do I have Fibromyalgia, but my husband and mother and father and step-mother and brother and best friend have been affected by it deeply, too. Both in watching me struggle, lending a supportive hand and coming to terms with the sacrifices I have had to make in my life and how that alters their plans, expectations. So usher in The Fibromyalgia Crusade, my attempt to unite a splintered, angry, abused and often quarreling patient body into one strong voice. WE HAVE FIBROMYALGIA, IT IS REAL, AND WE DESERVE TO BE TREATED WITH DIGNITY AND RESPECT WHILE GETTING OUR SYMPTOMS MANAGED! And pretty much everything I have done since then has been to further this cause. 

My dream is to see each patient taking responsibility for their health, quality of life and medical treatment. Refusing ignorant doctors and apathetic family members a place in their life. And spreading awareness in any and every way they feel comfortable with. This is what I want...what we deserve. I want to see a good faith effort headed our way. I want to see heartfelt awareness being spread, decent government funding budgeted for Fibromyalgia research and all of our family and friends sporting some sort of Fibro awareness something to catch a strangers eye and hopefully spark up an informing conversation. I want to stop seeing Fibromyalgia patients blamed for their illness or on the verge of going homeless. I really want to stop seeing so much uncontrolled pain and fighting to get it managed with doctors just ignoring that annoying depressed patient they believe us to be. And I really really want to never see again a very sick patient, long unable to work, denied the disability they have been paying into their whole lives. I need to know what is wrong with me, damn it! I want to finally be able to answer, Why me? I want the members of the medical community that have condemned or unfairly judged or failed to treat us to hide their eyes in shame as they recognize they were not-so-nice with their bull-headed ignorance. See above all, more than anything else in the world, I want to be done with this illness, I want to be free.

Thanks for joining,


  1. So well said. We are not nuts or mentally ill or looking for pity. We are in a pain, that is unexplained and worse than childbirth, with NO HOPE of it ever ending. Doctors, lawyers, judges, mental health folks, physical therapists, "friends", on and on, think we're just tired if trying. The only thing we can do is to keep joining together and "yelling from roof-tops", IT IS REAL,damn it! Like the tombstone says: "I TOLD you, I was sick!" Blog away, Leah, I love you, my "sister". Rena Falcone

  2. Yeah I got it too! Have for probably 15 at least years started cutting hair when I was 16, I have always worked!! I love to work!!I was a non believer even when I had it diagnosed. I have a new Doc now and He doesn't believe it and is cutting my Thyroid down because he says I am to Hiper, So I am Hyper? what does that got to do with Pain, I just want to fire this new doc but Damn Obama care Reuined my Health coverage My husband and I have to the Point I can't even go to the doc any more!

  3. I have a close friend whose life has been shattered by this illness . Everything you write is so true.

  4. ive worked union, work as a nurse and my passion is showing and training horseing i bearly can even do that now, and iam only 37 years old this all started after my stroke iam tired all the time and hurt some days i cant put one leg in front of the otherif this isnt real i would like to know wat is...

  5. Hi Leah,

    I also have fibromyalgia and have suffered with it for over 25 years. I also have a blog where I write about that and my bipolar disorder.

    I am with you! Let's get the word out.

    I am looking for people to submit their chronic pain and chronic illness stories for a book I am putting together. If anyone is interested in putting their story into a book, please check out my website at www.lifeonthedomesticfront.blogspot.com.

    I will put you on my blog roll. Great post!


  6. I also have fibro and it is wreaking havoc on not only my life but my daughters. I have lost my job, feel like a ping pong ball going from doctor to doctor and I won't get into my financial situation except to say it keeps me up at night. So I decided to go back to school and in english we had to write a ten page research paper for our final. My paper "Fibro Psychological or Physical" was written to prove that it is a very physical illness that is grossly misunderstood and how little research has actually been done. Anyway I was allowed by my professor to insert a post from my blog in order to give the fibro sufferers point of view. We did peer reviews and many students had never even heard of it. If you want some interesting reading on how fibro came about being labeled as a psycological problem look up Halliday, J Psycological factors of rheumatism. His way of thinking unfortunatly still exists today! Anyway I scored 240 out of 250 points on my final(yayyy)
    and I tend to remble :)
    Great blog Leah, you inspire me!

  7. Can I just say that you are so awesome! I love reading your blog! You say the things you want to say so well! Love, love it! Thank you for fighting for us!

  8. I am so very happy that you are doing what you are doing. Everyday I read your blog on Facebook and visit the website. I have no wristband and my t-shirt. I am trying to get everyone to "like" your page because it is so important for people who don't understand to try to get a clue. Love you and hope you see nothing but lilacs. Be blessed!