So – after a lifetime of (most unnecessary) health issues, I was truly excited to finally be diagnosed with celiac in September of 2000. Although there were several ‘down times’ that were centered on social challenges and self pity, the overall improvements were positively life altering. I almost immediately sought and discovered online support – and through this process
discovered how hugely unrecognized celiac was. I was appalled and amazed and very quickly passionate about spreading awareness.
That year – 2000 – was also the year I turned 40. What a great gift! As the days and weeks progressed without gluten in my diet, I felt myself transition into a healthier, happier, calmer, more rested person. My once stick frame started filling out and I felt more energy and enthusiasm for life.
This energy turned into passion for celiac awareness. It was devastating to me to have this knowledge of such an “easy” answer that was obviously being overlooked time and time again. My first effort was put into a letter that I sent to 100 local physicians, sharing my journey and requesting that they not overlook celiac testing.
Next – I contacted the local newspaper. The reporter wrote an amazing full page article that resulted in me receiving a handful of letters (sent to the school I worked at and forwarded to me from the newspaper). From this initial group of people who were reaching out, I coordinated a meeting at a local restaurant for our first informal celiac support group meeting. OH WHAT A RUSH!
I wanted to start a ‘real’ support group – but at first I found this to be a daunting task. Within the year, however, I did it - the Belleville (Illinois) Area Celiac Support Group was formed. We had montly meetings with food, with speakers – (including Dr. Kenneth Fine, a representative from the University of Chicago – and Shelley Case! Yes – Shelley Case spoke for one of our meetings!) I drove home from each gathering on such a ‘high’!. I sure wish I had pictures - but that was before I had a digital camera - and back when I was much more technology challenged, lol
Another meeting included local dietitians. I made a call to one from the yellow pages and inquired about including dietitians at a meeting. Apparently I called the right one because she
needed to form a meeting for a group of dietitians for professional development. We collaborated for a memorable meeting. After hearing stories told by support group members, the dietitians decided to work with us to create a menu guide for those newly diagnosed, our “Two Week Survival Menu Guide.” LOVED IT! By this time I had met several fabulous women who became a huge part of the development of this menu guide - and who I still call friends. We met several times to provide a guide we believed would best help newly diagnosed patients and the dietitians made certain it met all the dietary needs. Several meetings later our support group and dietitians' group had formed a survival menu guide. It has transformed since its original development as a dietitian maintains it and keeps it current. I have not had any involvement in it for years now. Here is what it looks like today: Gluten Free Survival Guide
A couple years after I was diagnosed, my declining marriage (which I had hoped would be revived along with my health) declined further as we were now separated. So – I had one giant step forward and one giant step back. This very difficult time coincided with a new very exciting
time. I had a growing desire for our group to expand and join in the annual Celiac Walk in May, joining forces with the University of Maryland’s Celiac Disease Center. I did not have that
energy to coordinate such an event however – until – that one WONDERFUL meeting when someone new joined us (Kate) - with all her new, fresh energy and paper in hand that gave information about the Celiac Walk. We quickly became friends.
I contacted someone I knew in St. Louis who had started a yahoo support group for the St. Louis area (St. Louis Alerts). She then made more contacts – and then a handful of us got together (from Illinois metro east and St. Louis area) to discuss plans and ultimately create the BiState Celiac Support Group. Again – WHAT A RUSH! What a FABULOUS first picnic – 2003 - Our first of many – which only grew (for several years, anyway).
Michael at the picnic in 2005
A Gluten Free Pie Eating Contest - 2007
Lots of vendors and samples - 2008
Adam met Fred Bird - 2011
But –the summer of that picnic was also the summer when I had to face the fact that my marriage was over. And I panicked. What would I do? I had been a stay-at-home mom for fifteen years – and then a teacher’s aide for five (at that time). It was not only very sad to see my family torn apart, but I now also needed a means in which to support myself. I needed a retirement plan. I needed a new direction in life. I needed to show my kids that life challenges can be altered into new life beginnings.
So I immediately enrolled back in school where I worked on and completed my general education classes, while still working as a teacher’s aide, for the next two years. (with the help of anti-depressants that first year – for the first and hopefully last time in my life). I was able to contribute less and less to the support group. But what the group gave me in return was just too much for me to leave it all together. So I pushed through, continuing my involvement in the support group while going to school and trying to keep some normalcy in my family.
And then – in 2005 I had to quit my job in order to enroll in the 2 year education program (which was only offered during the day, of course).
And – that summer before this all started –I met Steve.
Whew! Life became crazy busy. And along the way I had to loosen my ties with the support group – physically, anyway. It was during one of my drives back and forth to school that the inspiration for ‘Adam’ came to me. It was while driving that I had time to think freely. It was just frustrating not to have the time to see all my ideas through. During my involvement with the support group, I had heard time and time again the frustration over the lack of support and
understanding from family, day care providers, teachers, etc. And this idea for this children’s book had me leaping for joy! I couldn’t wait to get home to write the idea down. Which I did – and where it stayed, tucked away.
A new school year started and I wished that that idea had been created into a book to offer parents. And then another school year and another. And along the way, I finished my own education, continued to watch my own children grow, watched my oldest get married and then got remarried myself (and moved about 4 times in the process – another story of its own, haha).
So – life was too busy to put into this little book that I envisioned could make a BIG impact for boys and girls.
So there it was: in 2007 I graduated from school and got a teaching job right away. LOVED IT!
In 2008, Steve and I got married. In 2009 we built our home together. And in 2010, after teaching for three years, I lost the job I loved so much when Illinois state budget cuts caused my school to close my classroom. A roller coaster. I HATE roller coaster, yet …. I can’t seem to get off the one I’m on. Guess I don’t really want it to stop – cause isn't that life? - a rollercoaster?
So that summer was spent job hunting – and hunting – and hunting. But I was competing with a million other teachers who also lost their jobs. I kept a fraction of optimism until school started and I realized – "It’s not going to happen." During that previous spring and through the summer – when it looked like employment might be ending –I knew I needed to make something else happen. So I started to push the idea of getting the book going a bit more. After failed attempts with bigger publishers, I decided to go the self-publishing route. And I needed someone to illustrate it. After talking with a few people, and nothing seeming to work out, my daughter said to me “You can do it mom.” Those were amazing words from one of my amazing kids. Something a parent is used to telling their child "you can do it" was turned around to me and - wow! This thought had never crossed my mind. But – it was the end of August – I was without a job – So, I did it.
I was SO EXCITED to finally get my first copy in the mail. It was February 2011 – and it was finally published - about five years after the idea first came to me. WAY COOL! My book – and the resource I wanted to supply to parents would finally be available for the following school year! YAY!
Of course – letting others know it was available was (and continues to be) another thing. Lol
In the summer of 2012 I decided to change the cover that I was originally unhappy with. I also learned how to edit the illustrations to make this a more visibly appealing book. I still have a handful of copies that I am using in give-aways.And then in 2013 I altered the cover one last time. I also decided to make another version - a "girl" version. And in this process had a fun name contest. So now there are two permanent versions, as pictured below (along with an option to personalize your own book.)