Sorry I’ve been away so long, I’ve got a bad organisation/time management issue, I blink and days (possibly weeks) have gone by and all I seem to have accomplished is more little jobs and projects still not finished?!
There is a reason for my post, apart from trying to kick me back into blogging, I lost a very dear friend today!!
This may have to be written as I feel it, I can come back to edit if I think it needs to be!
(I have come back to Edit, but all I’ve done is correct spelling errors etc! So please excuse if this appears jumbled? I’ve returned on IBD awareness day 2016 as I know feel brave enough to tell people about this poor excuse of a blog but even today I cannot finish reading this without crying. She has left a big hole in the heart of the Crohnie family!?)
In 2009 I was very poorly, extremely isolated and hooked to the world-wide web.I had battled with my Crohns for nearly 20 years, never hiding it but never really letting anyone in totally. The internet had opened doors of knowledge but still limited and Facebook was only just taking off but I spent hours on the few support forums I could find, usually completely spangled on pain meds, pain and loneliness!
Isn’t it strange that I don’t remember a lot from 2009 to mid 2010, a few months after Eric the Stoma had come into my life, yet I can remember when I first heard of Amy Reynolds.
I can’t remember what site we were on when I had someone ask if I could give her some advice. Her sister who lived hundreds of miles away from her had Crohns disease and was in so much pain! Barbara J Powers has held a very special place in my heart since that day in early April 2010, My family were all I’d had when I had my bad days and for them to be 100’s of miles from me, as Barbara was from her sister, was unthinkable. Barbara was hurting as well! I didn’t know at that point that her Sister was going to be one of the best things to happen to IBDers worldwide, or that when a lot of us were sick just coming on to Facebook and seeing her happy face with her smile so dazzling you couldn’t help but smile as well…
(Ok so its 320am, I’m in tears and can’t see so gonna try and turn off and get some sleep. But the tears in my heart seem to be leaking from my eyes and sleep may be impossible)
The 3 of us (Barbara, Amy and myself) msgd almost daily with inspiration and support. Less than a month after that first conversation I was invited to join a community called Lets talk Crohns and other GI issues, Amy had got together with another ‘Crohnie’ (Kate Gemmill Shirley) they had decided to put a page together to support the IBD community and to inform and educate. There were less than 10 of us in the group, but it grew and is now helping 7621 Facebook users almost daily. There are pages and pages of research, info on meds, jokes, inspirational pictures and even some members real stories. It has brought together people from around the world, all different but virtually living the same lives. It opened up our chances to fight this ourselves, we could now see what the rest of the world was (or wasn’t) doing to treat IBD. New procedures, new meds and renewed hope. Lets Talk (https://www.facebook.com/LetsTalkCrohns/) isn’t a closed or secret group so it even helped family and friends link with our community if they needed info or wanted to pass on news after surgery, but probably the best thing is it raised awareness of the issues and realities without secrecy or embarrassment.
I do honestly believe that from this little group started by Amy and Kate most of the current support groups for IBD have originated, and there are quite a few on Facebook, some little ones that are just friends wanting to communicate, one just for jokes, some won’t allow joking! There are ones that are dedicated to either Crohns Or Ulcerative colitis and others for Ostomates and even ostomy fashion and dressing tips, (Osto-My Fashion) There are big awareness and fundraising pages and little community event pages. Each and every one of them doing what Amy and I did in that first month (and ever since!), sharing information and love to each other!
Amy was a very special person and during my bad days, no matter what was happening in her life, she was there for me. When I had my op she was there daily asking Bazzy and my parents for info and even passing it on to the rest of the group. Every morning she got up she was on Facebook boosting me and taking my mind off things! I had made other IBD friends on-line, some are still very much in my life (Nikki Watson and Sue Taylor are just a few I can name at the moment!) but they were all at different points of their health journeys. I could empathise and advise but I still felt very isolated. Amy was one of the first who was almost mirroring my IBD! She wasn’t quite at ‘The Bag’ point yet, but it had been discussed and it wasn’t going to be long. We were on the same meds, we both had advice the other didn’t know. Some days before my op she was the only person who could make me feel positive. Over the years, as the group grew and my health issues changed slightly, our contact with each other has slowed a bit but we were still there for each other when we down and we still had random chats about general crap, little picture posts and memes were sent for no reason…just because. We were both even diagnosed with Hidradinitus suppurativa, (See more here…http://www.hstrust.org/ another relatively unknown disease which is linked with other auto immune issues!
Amy was such a fighter, she not only stood strong against everything her body was throwing at her but she also supported her husband with diabetes, 3 stepsons and their family all with a smile on her face and determination in her heart! No matter how ill she felt she put her face on and braved the world! Working hard when many wouldn’t even try and still remembering when one of her flock was going through bad times! If I had a wish right now it would be that everyone could have met Amy! Her light will always guide our way and her memory will live on in us all! She battled to raise awareness and to try to find a cure for IBD so hopefully future generations shouldn’t have to endure the pain, humiliation and never ending procedures that we all (Patients with IBD!) have to endure. She was always there telling us to keep fighting, be strong and never give up!
I know would have and could have beens are no use to us really but when I look back on our trip to the USA I can only wish that instead of travelling to Gracelands to see the disappointment that is Elvis Presley Boulevard we should have driven the 500 miles (only 12 hours out of our way, we drove 7 hours off route to get to Memphis!!!) to Greensburg Indianapolis, so I could give and recieve the hugs we had been promising online for years! I never even thought she would be taken from us so soon! I thought I’d have a chance to see her next time!
Her Death on 26th November 2015 shocked us all, she was only 51. Her smile and her love will be missed but she leaves a legacy of love and positivity that will probably outlive us all! On this day we lost Amy but a true Angel gained her wings!
Rest in Peace my darling
Luv’n’ugz and Fairy wishes always and forever
x x x x x
I’ve set up a memorial site for her, But I’m hoping and counting on those who knew her to fill in the blanks, to share their stories, their love and gratitude. I’m not too sure if this is set up correctly and really hope that others can see it and comment on it!