Monday, October 11, 2010

Strong In A Storm Of Criticism

One thing that is very important to me is the attitude of this blog remain positive. It is critical for us to support each other with grace and dignity, show respect even if we don't necessarily agree, not compete for who has it harder or suffers more, belittle those that are more fortunate in life or illness and judge those that do it differently or come from a place we don't understand. We face enough adversity in life. The last place we need hindrance is in a place of supposed support and acceptance. I am amazed we have grown as much as we have and our positivity and integrity have remained intact! I am so impressed with the quality of people my blog and The Fibro Fun House (nothing more exciting than my Facebook page) have attracted. I feel such a deep kinship with so many of you. But apparently something I wrote a few days back struck a strong enough nerve to warrant some critical feedback. Wow was that hard for me to take! My initial reaction was, "Screw you, don't read my freakin' blog then!". But I calmed down a bit and re-read the comments enough times to gain an appreciation for the place my readers were coming from.

I am well aware that I am going to encounter PLENTY of criticism and resistance as The Fibromyalgia Crusade grows and I enter very public forums with our message, our plea, to be taken seriously and treated humanely. But knowing and feeling are two very different levels of being! This was actually a very important experience for me to walk through. A very mild version of what pugnacity and attack will inevitably come, and most likely come hard and fast, mean and rough. It had to do with age of illness onset. Some are so young, born with Fibromyalgia, always knowing it. Others pick it up at various stages in life, both male and female, teens, 20's, 30's, 40's, 50's, 60's, 70's, get my drift. I had written that being in my late 20's when I got sick was cause for me to fight fight fight with all my might to manage it because I had my life ahead of me. In writing this I pissed off a whole group that had a different experience than I did, those that got it when they were older or have had it much longer! Wow, so not my intention! I am truly sorry if I came off as insensitive. I was just blogging my personal experience, all I can speak to. Conversely I have also heard from readers that doubt they would have fought as hard had they been younger when they got sick, not knowing any better or having the personal strength to do so, not having as much to lose. The Fibromyalgia experience is SO subjective, so individual, deeply personal!

I had just sat down at my computer this morning, determined to start the week on a good note even though my Lilac was being morphed into a Mulberry outline. But once I read those comments I got all wigged out at the critical feedback. I started feeling flushed and my throat scratchy and my head started aching. I am still immune suppressed on Prednisone and any pain in my head freaks me out about another stroke, so here I sat deflated, confused, hurt. I have given so much of myself to these pages. I have revealed my true heart and soul and received such unconditional acceptance...until now. I felt picked on, attacked for not being perfect. For blogging about my experience and not considering every other position any person that could possibly be reading it held. A wee bit oversensitive, perhaps? Well yes, Prednisone can do that to a girl! But this has actually given me an awesome opportunity to establish how I receive critical feedback going forward and has been an amazing cause for personal growth. For this, my dear readers that felt inclined to speak their minds, I thank you. You stretched me in a way I did not want to stretch, but needed to. As my auntie said to me once as I sat hidden in the bathroom crying after being insulted at a family gathering, "My dear you have very pretty skin, but you need to thicken it!".

Thanks for joining,


  1. Leah I want to thank you so much for this blog as well as The Funhouse on FB. I was just diagnosed in March and am still learning. I have learned so much from reading you blog and the comments. I truly believe you will be blessed for doing this one day!! You take the time out of your day to try and help others, and for that I am grateful!!! Soft and Gentle Hugs...

  2. Leah, sometimes taking a course from the Hard Knock School is difficult to take, but I'm giving you an A+ for the final grade! Although it's a shame some people forget that this is YOUR blog and YOUR feelings and YOUR experiences. I blessed to have become friends with you and all the others. Please keep doing it your way! Gentle Hugs :) Connie
    p.s. Now I understand the 'stress' from the weekend.

  3. Hmmmmmm....I am sorry that this has happened Leah. It is never very fun to experience this. I just got back from a particulary bad doctor appointment. I am tired of feeling like the medical industry is just trying to brush me off, claim me crazy and push me aside. Trying to just quiet me and appease me. Denying me medical care and referals to the doctors that I actually need and not actually listening to me.

    Annnnnnnnyways, let me take some of the heat off of you. I am transgendered male.I was born female and take testosterone, self injected every other week. I look male, live male, act male, have male on my drivers liscense etc. I got sick when I was 18, before transition. After starting the hormones things haven't hurt 'as bad' but it's still really bad. Just not horrible. Bad part is, after I started taking injections the test started coming back negative. Auto immune diseases are fueled by estrogen. Now the doctors ignore me, pay me no mind, and I am forced to live in wretched pain and extremely angry at the medical profession. Part of me wishes I never left San Diego. Being military I had great medical networks down there, where up here I do not.

    I fought at first, a lot, hard, never gave up, kept going back to work, changed this, and that, tried this med and that med, tried this energy field in Arizona, meditation, acupunter, chriopractic, massage etc, I tried it all, at least once. Everything is worth a try. And then, it just consumed my life, consumed me. I was miserable. So then I just; let it go. It is what it is, and I let it be. I've felt much better mentally since then, since not letting it all consume me.

    But here I am, a person, with a serious problem walking into a doctors office who is denied medical treatment.
    Cause all they see is a tranny, a freak, someone too young to be sick, with a invisible disease and clean test and they just don't give a rats anything about it. And they brush me aside.

    As if we as a collective don't have enough problems in the medical field with our health and getting proper health care. You throw in something different, that they cannot understand, that scares them and they use it against you. Refuse to treat you, or worse, hurt you.

    I think I might drive back down to San Diego for medical. It's only a thousand miles away right...


  5. Leah, You are just telling how it happened to you... Not sure why some folks are so easily defensive... So offended by whatever.....when there is no offense anywhere....???

  6. OK, here's my 2 cents (adjusted for inflation of course) I was married at 21, had my first daughter a year later, and my second daughter 22 months after that. After Jackie (2nd. dtr.) I was never the same. I developed Graves disease. Then it was my Gallbladder..I finally had that removed a few years ago. It was daily headaches, Migraines, irritable bowel, low energy, allergies, a nasty anxiety disorder. My way of dealing with all this nonsense was to soldier on and not talk about it. I raised my kids, went to Nursing school for my LPN at 40, took so much Excedrin for the headaches I gave myself an ulcer. I managed . I knew SOMETHING was wrong with me, but I couldn't put my finger on it..finally, after going through the worst menopause in recorded medical history, I had an epiphany..I was NO LONGER YOUNG! DAMN! If I was like this now, what was I going to be like in a couple of years? I lost 50 pounds , started to take walks, and went to a neurologist about my constant headaches. Around four years ago, I just fell apart. All the syumptoms seemed to get much much worse. I was finally diagnosed with Fibro at the age of 60. I will be 64 next month, and thanks to the right cocktail of meds I'm doing a lot better. Here's the thing, I cannot tell you how many times I've said to my husband "If this had to happen, at least it comes at what is basically the least stressful, most peaceful time of my life." There is no way I could hold down a job now, much less go to nursing school. I'll probably get slammed for this but I think it IS worse to have this happen in your 20's. You are amazingly strong, but have this happen in your 30's sucks... Judy

  7. I love all the feedback! We all have our opinions based on our personal experiences. As I have said time and time again...this is not a 1 size fits all illness! Blessings to us all for walking this journey and may we relate to each other with dignity and grace ;)