R.I.P Amy Reynolds (Another Angel gains their wings.)

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?!

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There is a reason for my post, apart from trying to kick me back into blogging, I lost a very dear friend today!!

Amy Reynolds Obituary

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…

This smile has helped thousands get through their day!

This smile has helped thousands get through their day!



(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.

Lets talk Crohns and other GI issues.

Lets talk Crohns and other GI issues.

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!

Come look for us on Facebook at Lets Talk.

Come look for us on Facebook at Lets Talk.

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!

We will continue to hope for a cure soon!

We will continue to hope for a cure soon!

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!

Amy Reynolds Memorial.

Please pass onto groups or people I’ve missed.
 
Barbara J Powers Stacey Brouman Kathy Jo Fawcett Reynolds Donna Mear Let’s Talk Crohn’s and other GI Issues IBD Warriors Support and Awareness IBD Connections Never Feel Alone Ibd Fighters Support Group ibdjourneys Crohn’s Colitis IBD Support #GetYourBellyOut #IBDSuperHeroes

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That inner voice!!

Can I get a time out from my little inner voice please?
Through a bit of pain I’ve actually managed to clean, tidy and Hoover my bedroom and parts of upstairs.  Admittedly it has taken me 2 days, well an hour or two yesterday and then again today. This is something I’ve not been able to do for a while and infact I have had a friend come over weekly to do my housework until recently, when she managed to land a full time job.  My little OCB’s don’t like that my body is unable to clean!  So yes I was feeling so so proud of my self, my pain levels increased because of doing it but that just makes the accomplishment so much sweeter but then…..

…the wretched voice inside (yes the one that keeps me company when I’ve had no human contact!!!)  pipes up and dashes everything with one sentence!
‘what’s to be pleased with?  You’ve only done what most people do every day,  most before they start their day!!! ‘

Inner voice I Hate you!! 

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Luv’n’ugz and Fairy wishes xx

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Delayed ouch!?!?

So Baz has just pointed this out to me!  It’s on the inside of my thigh and it looks like it should have hurt….

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…..but I have no idea where it came from! 
Just another random bruise I can’t explain! Hahaha

Luv’n’ugz and Fairy wishes xx

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Dare I mention the ‘C’ word in September?

So I’m feeling quite accomplished at the moment! I know it’s not something many would understand but i have actually finished 10 Christmas cards and have printed out about 20 basic cards and the 3d sheets to build them and its not even the end of September!

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Now I know my Mum hates it when the shops fill up with Christmas stuff before November even starts, and  used to hate working in retail when the non stop repeated Christmas songs started the first week of November and we would have to listen to the same tunes over and over again but for the last few years I’ve been so behind that some cards have never been posted and others (mainly the important family ones!) haven’t been finished until Christmas eve and that has left me wrapping presents still on Christmas morning.

Christmas crafting
Hopefully though I’ve learnt my lesson, knowing that my pain levels and abilities hinder me and the more stressed i get the less productive I get so I’m trying to get on top of it now!  Before the end of November and December Birthdays are upon us!

Luv’n’ugz and Fairy wishes

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I wish?

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Every thing in my soul wants to be up and bouncing!  My body thinks differently! Can I get a refund please? I only wanna dance!!!!

Luv’n’ugz and Fairy wishes xx

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Ouch! The things we do in the name of vanity!

To be honest about this, it is mostly us girls that primp and preen and if the girls I know are anything to go on most of them do it for themselves!!  Sorry boys,  but yes we dress up in sexy clothes if we can,  we get our bits waxed and tweezed, our nails created and our hair colour out of the bottle not just for you. It’s for our own benefit a lot of the time.  So when we leave the house having spent hours in the bedroom getting ready we feel great about ourselves and we all know a good night out must start with a drink or 2 in front of a mirror and our wardrobe scattered into the 4 corners of our rooms.

Vanity for ourselves

Vanity for ourselves

But I must question this?  Especially at this moment in time as I’m stood in our ensuite for the 2nd night running with what feels like industrial acid on my head,  why we feel the need to hurt ourselves to feel good? Why am I doing this? My answer is because I’m bored and a tad frustrated at myself lately. Unable to work due to all my health issues,  stuck in doors, on my own mostly, as friends are doing what all humans usually do….. Work,  eat,  sleep,  spend time with their kids and the families of their kids friends etc and trying not to admit to myself that in fact I’m sort of a waste of air.  Where my body was once my only enemy,  without some form of stimulation my brain is also deserting me and with it my ability to think of a lot of positives.

Now before anyone reads this and thinks I’m whining for attention ( you obviously don’t know me very well!  Yes I crave attention but I do it in other ways.) the isn’t a pity party for one,  I’m just stating the facts. I don’t work,   I  won’t be reproducing,  I can’t do housework and even cooking a decent dinner for my hubby is rare event! So yes the thoughts of ineptitude are warranted most of the time!

And off I wander again…

Focused Freak

Focused Freak

So back to the point,
I’m off out this weekend, a rare treat for both of us but also a bit scary for me these days! I used to love going dancing, usually from late evening through to after the sun had risen the next day. It was my reason to forget most of my issues as I was surrounded by people who were there for the same thing and understood that when the bass drops all chatter stops as the feet take over. Now a days I’m lucky if I can bounce to half a tune before collapsing in a heap looking like a sweating beetroot but that hasn’t stopped me for long, I will dance 1 footed, looking like a flamingo or sit on the floor and do all the motions without too much pressure on the back and the feet and I could probably handle this as I’m still in my little music bubble feeling very loved and loving but the last year hasn’t been good to me. The H.S has been a nightmare and my stupid body temperature is causing issues including dehydration, along with a few down days (Ok….weeks!) I’ve put the weight back on and for the first time in a while I don’t feel confident about myself, no confidence means I’ll not enjoy myself and that isn’t the person I am!

Vanity for ourselves

Vanity for ourselves

So I’m determined to try and get myself over this little blip. So yes, for this weekend I will prune and primp, tweeze and trim and generally put on a costume. Not for anyone else but for me, it’s all so I can look in a mirror and feel good about how I look! To know that no matter what my body thinks I have done the best with what I’ve been given! The fact that by the time I actually get to the party I’ll be overheating already and the week of tarting myself will be wasted but I will know and it will give me a boost!

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Its been a long long time……

…since I last laughed so hard I couldn’t breathe which I guess would’ve been today’s positive if not for Lolapops tripping me down the stairs again!

I’m off to a boat party soon with TJO and crowd (Boomtic Records) and after my year of HS and depression I have to admit I’ve put on weight and am really not happy about it.  Anyway I thought I treat myself to a waist trainer/cincher from amazon, I’ve always worn shapewear stuff anyway as it normally just defines my curves but since Eric has come on the scene I now use them to hold him and his bag in place so being a bit restricted isn’t a big deal for me!  So after reading the reviews of quite a few I decided on this one.(Waist TrainerIt was repeated by quite a few buyers that the sizing came up big but knowing my body shape and thinking of Eric (My stoma!) I decided to stick with my normal size.

So I managed to get first and second notch on with a bit of slight pulling, the 3rd was difficult but the 4th wasn’t happening. Even without the arthritis in my hands I would have had issues. I thought putting my Spanx  knickers on (Spanx) hoping to smooth the line but it still wasn’t happening! Time to resort to lying on the floor where I manage to get the 4th done up and working on the 5th when Lola-pops dog decides to ‘help’ me! This is where the laughter starts……but she now wants to know what the sound is coming from my mouth and comes to investigate and the giggling uncontrollably starts. Eventually through the giggles, the attempts to deflect a dog’s tongue going into my mouth and a lot of tugging and twisting I managed to get the corset done up!
It was worth it!

Before..

.Before the corset
 

After….

after the corset

The blurb on these waist trainers is that if worn for an hour or 2 a day the waist will be slimmer and more toned so I kept it on to walk the dog! I can see how it would work but for me I think it’s going to be like new shoes, just knowing I’m wanting to wear it for more than a few hours I think I need to bed it in, so whether it works or not the corset will be worn as much as I can and soon I might learn to bend, move and even breathe in it!!

Luv’n’ugz and Fairy wishes

Jojo

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Hello Out There!

So I’ve spent days this going round and around, just trying to get my head around the site!
I’m still not too sure but it’s time to start learning again and how hard can this be?
I’m not going to do too much at moment, I just thought I would put some words down and say hi!

My first goal will be to add a little note about me, in all fairness once I start you’ll be glad you can take a break I have been known to waffle on a bit!

The second step will, hopefully, be me blogging! Although my poor little brain cell has lost its ability to focus since leaving work, hence the reason I’m trying this!

Much love! (to no one at this point, but that’s never stopped me jibbering away see before. So why start now?

Luv’n’ugz and Fairy Wishes!

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