Well it's about time I got myself on here, huh? So I thought I'd start with an introduction and tell you why I'm here.
So, the name's Aimee! And yes, this is what I want to do! Enough hookiness yet?? I'm a licensed social worker, and spent my years working as a forensic interviewer/caseworker as part of a colloborative team investigating child sexual and physical abuse. I loved what I did, even on the soul crushing days. At least I felt useful, like I was doing something worthwhile in the world. I'm single with no kids (well, 3 furkids), although I'm very involved in the raising of my 11 year old adopted brother. My parents and Isiah live about 3 miles away, so that is great. I've had fibromyalgia since I was very young, with symptoms starting around when I was 7, but I had it pretty well managed with vitamins and occasional pain meds.
But then just over 3 years ago, I was running down my steps to my car after being off work for a week with a bad kidney infection. As I got into my car, my vision narrowed and I felt an intense pain in my chest. And then I don't remember anything for several minutes. I came to getting sick. The blackness tried to cut in again, but I opened my car door and fell out. After lying there a few minutes, I called my doctor and they said I could come in. I thought I had the flu. I drove the nearly 20 miles to my doc's office and my mom met me there. When I mentioned that in addition to this weird pain in my chest, I also had a small cramp in my leg, my doctor wigged out. I was on a gurney and being rushed to the ER by an ambulance before I could spell 'ambulance'!
Once there, my parents were told I likely wouldn't make it the night, as a massive blood clot had broken off and lodge in my lungs after causing a pretty significant heart attack. Did I mention I was 36 at the time? My lungs were so full of clots the doctors did not think there was much they could do. And yes somehow, I surprised everyone. The nurse who had me on admission was back on the day I was discharged. She told me she has never seen anyone as sick as I was make it through, and that told me a lot.
I have something I'm meant to do.
But what? I spent the next year depressed and angry. My employer, who I gave body and soul to for 14 years, felt I was too "high risk" to allow to come back to work. They forced disability on me, and then failed to submit their paperwork so that I would have some sort of help. I felt myself getting sicker and angrier as time went. I needed something, but I didn't know what. I finally started seeing a therapist and she asked if I had considered volunteering or doing something ... anything! I felt ambivalent, I wanted to work, I wanted the income I had before! And then during this year my parents started their series of surgeries, for a total of 5 joint replacements between them in just over 2 years!
I finally decided to try to find a fibromyalgia support group. My previously manageable fibro had ramped up into a beast I didn't recognize. The pain and fatigue were overwhelming and I knew I was falling into a hole. But I couldn't find a group anywhere near me. I tried some online groups and it was ok, but I needed more. So one day I woke up and said "enough". I decided I needed to start a group.
It took me months to do something I previously could have had up and going in a week. But I got my first group started in September 2008. And for 4 long, lonely months, no one came. And then one came, then another and now my first group has about 15 regulars and another 10 or so who make it when they can. Wow! My therapist said "that's nice, but what about this area?". She challenged me to do it again, so I did. My second groups started in April of 2009 and now has 7 regulars and another 15 or so sometime attendees. I then thought how great it would be to have a website where everyone could touch base, so I started a support page on Facebook. Imagine my surprise as people just kept coming to that page and it now has 725 members.
Through this time, I have had 2 newspaper articles written about the groups and fibro, one television interview, and countless calls and emails from other folks dealing with fibromyalgia. I found my purpose. I now know why my life was spared, I had work left to do. So every day I devote myself to fibromyalgia. Sounds odd, doesn't it? But honestly, the worst thing in my life is also the best thing in my life. Without fibro, I wouldn't have all the appreciation for the world that I do. Without fibro, I wouldn't have met all these incredible people. Without fibro, I wouldn't have a purpose.
I spent some time here on Lumigrate when it was first starting, and loved the approach this site is about. I firmly believe my health care is MY responsibility. I research everything and then find more to research. I thankfully have a doctor who wants my input and who, on occasion, calls me to suggest something for a particularly tough patient. I will admit I lean towards allopathic medicine, I take several different medications and for me right now, they are important. But I also believe eating healthy foods, limiting the bad stuff, keeping myself moving, and all kinds of other things help me manage each day.
I was feeling ready and Mardy asked me to do some blogging here. We talked several times and felt it would be a good fit. But then I got sick again. This time my digestive system just shut down. I spent several months back and forth with one doctor after another and no real answers. One day, my digestion started up again. Fibro is a weird beast! I've also picked up a few more diagnoses in the past couple of years and new symptoms are a daily seek and find. Then my mom got sick... do you see a pattern??
So I'm hoping you'll all be with me on this path as we keep learning, teaching and moving forward. Every day is a new adventure with fibro, and I'm ready to take it on!! Hope you all enjoy and let me know what you think!!
Aimee
Links:
[1] http://www.facebook.com/pages/Fibromyalgia-Support-Groups-by-Aimee/94975642116
[2] http://www.lumigrate.com/forum/well-its-about-time#comment-658
[3] http://twitter.com/lumigrate
[4] http://www.lumigrate.com/forum/well-its-about-time#top
[5] http://www.lumigrate.com/user/login?destination=node/514%23comment-form
[6] http://www.lumigrate.com/user/register?destination=node/514%23comment-form
Comments
Even though I've had the pleasure of speaking with Aimee and have talked about our stories and histories, I was just mermerized by this introduction. I found it really interesting that you said you'd always used supplements and you're clearly aware that taking care of your spirit is part of your managing your chronic illness, yet you classify yourself as leaning 'allopathic'. I think you're more 'integrative' than you think!
I'm sorry these things have happened to you .... to me ... to any of us, but I'm really proud to have created a website that is now YOUR website, from the first day you started reading or writing on it, Aimee.
With your education and vocational background and abilitity for communication, I'm sure your 'occupation' of being a health educator here at Lumigrate (and other places such as your facebook and your 'live' groups) is going to be a good one. Very glad you're with us! And in closing --- I find it REALLY interesting how you persisted for THAT LONG with a group that nobody had started coming to yet. Wow.
I recalled how Dr. Young and I started a group together a few years back in the medical building I used to see patients at here in Grand Junction, Colorado -- basically a population of 100,000 regional for medical purposes. We invited our patients who had done well initially, to help us formulate what the education group was going to be 'about' ... they named it Fibromyalgia Forum. And it was in those times where I saw so many providers and people with chronic pain who wanted to come see the speakers we were having come in and how few could actually attend, that I got the idea for Lumigrate. It was exactly three years ago we were doing that and Helen (permission from her to use her name and story) tells me she recalls being the only one that came the first day. But within a very short period of time we had a really good sized group -- it was word of mouth or people who saw the free listing in the local newspapers.
And then once there was a good 'core' of people that knew each other and we felt solid (kind of like the Lumigrate Grate Group is now), I made a flyer and distributed it to the physicians in our building. They mailed it to some of their patients that came to mind even .... and handed them out to those in the building to see them. BUT a problem we had is that every week we had a new person or more come who needed to start from scratch AND they needed that time to process and tell their story and truly were just SO RELIEVED to be in a group of people that understood what they had been through. And that was good for THEM, but didn't allow the others to 'progress' in their knowledge about body, mind, spirit....
So Happy You're Here .... You're Grate! ~~ Mardy
Live and Learn. Learn and Live Better! is my motto. I'm Mardy Ross, and I founded Lumigrate in 2008 after a career as an occupational therapist with a background in health education and environmental research program administration. Today I function as the desk clerk for short questions people have, as well as 'concierge' services offered for those who want a thorough exploration of their health history and direction to resources likely to progress their health according to their goals. Contact Us comes to me, so please do if you have questions or comments. Lumigrate is "Lighting the Path to Health and Well-Being" for increasing numbers of people. Follow us on social networking sites such as: Twitter: http://twitter.com/lumigrate [3] and Facebook. (There is my personal page and several Lumigrate pages. For those interested in "groovy" local education and networking for those uniquely talented LumiGRATE experts located in my own back yard, "LumiGRATE Groove of the Grand Valley" is a Facebook page to join. (Many who have joined are beyond our area but like to see the Groovy information! We not only have FUN, we are learning about other providers we can be referring patients to and 'wearing a groove' to each other's doors -- or websites/home offices!) By covering some of the things we do, including case examples, it reinforces the concepts at Lumigrate.com as well as making YOU feel that you're part of a community. Which you ARE at Lumigrate!