Wednesday, May 4, 2011


Christmas, Easter and Fibromyalgia awareness day

Ok let’s play a game here, ask 3 friends if they have heard of the 3 items listed. I would bet bottom dollar that the vast majority do not know the 3rd day exists. (its on May 12th for those who dont know) So what does this mean is it really an important day? Is it really important to make people aware of it? Breast cancer has a whole month dedicated to it and has it help that cause? Well besides the millions of dollars it gets in donations during that month, what has the month done has it brought a cure? And why would we for one second believe that an awareness day once a year on the calendar is going to change any thing? Who knows anything about this day I think it is a secret, want proof?, go to Google and type in awareness days 2011 and let me know when you find it listed, I went through 12 pages before I quit after I learned about queer, puppy mill, Ct. ski council, international vulture, singles and penguin days, that’s right all of these are list if not once multiple times from page 1 thru 12 on the awareness days for this year but not one single mention of fibro day. So really why should we care? As a community we are just trying to survive we are trying to just get thru one more day, as spouses we are living awareness day every single day (let me preface these next statements, all of you reading this that have fibro you do not need awareness as you are the one living it day in and day out). Why would I say this, ask a spouse the following questions, Do you wonder how I am feeling this morning this afternoon this evening? Are you frustrated that we can no longer -- ---- (fill in the blank)? When I feel bad do you wonder if I took my meds, do you say to yourself I hope this isn’t going to be a bad spell of pain for her, do you get frustrated because everyone of the friends you have always ask how I am doing, but never wonders how the husband is? Do you get tired of every time you show up somewhere alone the first question asked is “ how is your spouse and where is she will she be here today” ok I know it sounds like a pity party it isn’t really it is just the fact that no one is truly aware of what goes on in the houses of people with fibro, they see only the glimpse of it’s a bad day, or she feels bad enough to stay home and miss this, must be like a 24hr flu bug. I mean what does awareness really do for the cause everyone of us is aware of how are lives have changed but not one of us know what tomorrow is going to bring. I know my wife isn’t looking for someone to take pity on her because this one special day is coming up, and I don’t think I have one single person I have come in contact with in the past year that doesn’t know someone with Fibro, and everyone has a cure except the CDC or FDA except lets pump them with some new meds and see if this will work this month. What does awareness mean and how many of us really stop and learn about the cause on awareness day? I do research every week on news and info about fibro and I am no more aware of what is truly going on then the person who just found out today as we read this that she has fibro is aware of how life will be forever changed.
Let’s for one moment forget about fibro awareness day and ask what can we really do to change the mind set of the people in America and the world to help them understand what this disease truly is. It is a terminal disease (check Webster’s, Wikipedia, medical dictionary) I will let you look up the definition to see if I am right, So why don’t we as community of survivors and spouse start contacting our senators, our doctors , who ever we need to to have it changed and then maybe we could truly get the recognition it deserves and maybe even the funding to find a cure instead of some new medication. ( its not that i am being negative by trying to label it as terminal, I just want to feel as though the medical community takes this seriously and puts the funds to finding a cure, or at least the cause so we can see movement towards a cure)

Well I guess is should end this here but before I do I am asking a favor of all of you, if you are a spouse take note you are not alone, if you have fibro I have no clue what its like but I love my wife and I live the repercussions of this disease, and most if not all of us who are spouse do truly try to understand but some days we just cant, if you are a friend I understand you get frustrated at how we don’t show up some times and most times we are late getting there and its hard to get us to commit to anything, understand this isn’t how we want things either but we do understand when you lose patience on us as we lose patience's with ourselves. Please feel free to post a comment and lambs baste me for what I have written or just leave Lynn a comment



  1. What you've said is so true. Spouses, friends, and families are affected by this syndrome.
    I believe that as a syndrome disease, Fibro will never be cured, but I do look for awareness and better treatment methods.
    Acceptance goes a long way, but it's only one step in the right direction.
    I'd like to see some treatment protocols that do not have so many negative side effects.
    Lyrica is the most-prescribed medication for Fibro, but the side effects usually leave the patients with a hatred for the drug.
    Caregivers, family, and friends often lose patience with the afflicted, and that only leads to more of the stress which initiated the disorder and cause flares with the illness.
    I personally don't know what I'm looking for, but I wish there were more treatment options, awareness, and recognition of a syndrome that affects so many (mostly) women.
    Getting the message out that we suffer and have limitations is a good first step, but treatment that is effective would be the better step to take.
    I hope that somewhere on the horizon there will be preventative options and more treatment protocols available, but I also think that the medical community is as baffled by this problem as are the victims of this disorder. I am of the opinion that prevention would be more the better treatment than any medical care after the disorder is diagnosed.
    We all must remember that this is a fairly recently recognised medical condition. It sometimes takes a long time for the medical community to adequately respond to proper care protocols for any disorder, and this is largely a condition that affects women, and is dismissed as a 'women's problem'.
    That there are so few women practicing medicine may be one of the problems that exist in finding viable treatment options from the medical community.
    I hope, with you, that there will be more awareness of this syndrome, and that the medical community will be ready and willing to step up to the plate and tackle the need for more viable treatment and prevention options.
    The medications and treatment options that the afflicted use are a way of tearing down the spider webs, but it would be nice if someone would just kill the spider.