Queen of Procrastination!

That’s me!!

So this is the post I’ve been wanting to write since early February. It has been a leader on my to do list every day for the last 3 weeks. Yet I only find myself writing this at 1 am in the middle of March. I could throw excuses at you, I could possibly even make complete strangers believe that I had a valid reason every day to do not update you but the truth is, as those who truly know me will confirm …. I’m a procrastinator. Or in terms most people use to describe me I fiddle and fart arse around, making easy jobs overly complicated and delay tasks I’m not comfortable doing until another day!

Fiddle-and-Faff

My life skills.

Not that writing this should be complicated, it just takes more concentration than I’m used to and I’ve never been happy talking realistically about myself. Which, at the end of the day, is the purpose of this blog!
Lots has happened since January and not all of it has been bad! I’m still dealing with tolerable pain levels, learning my limits the hard way. Most days the pain that has been restricting me so much in the last few years has been easier to cope with, the new pain meds and change in my anti-depressants still seem to be helping this. Even though I had no real news from the neurologist appointment this week I’m still hopeful that we’re getting somewhere with my pain issues.
My positivity has been having a good effect on my training with Lola, longer play time in the park has helped. She is listening more and therefore I’m trusting her more and the cycle is repetitive, most of the time for the better! We still have our moments though!?!

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I told you she bullies me!

The weight loss is going slowly, it seems that when my health is bad my appetite goes into overdrive, but being unable to stand for long or concentrate I grab which ever food is available! I try not to keep crisps and chocolate in the house so that helps but my diet is so limited to start with that I end up eating cereal or toast. My activity level goes down when I’m bad, naturally, and I end up eating way more calories than I burn.
On my good days though I’m quite proud that I’m averaging between 8000 and 10000 steps a day. Slow steps but they all count eh?
The Orlistat seems to be doing its job, with little effect on my Stoma, Eric.  The only issue I can see is that I don’t eat a lot of fat and the drug is designed to extract the excess fat in your diet.  I know I need to lose the actual weight for my GP to be happy but at the end of the day I’m losing size more than weight and that’s all that matters to me!
I have a lot of ‘fun’ things planned for this year so if losing weight enables me to not only do these things but enjoy them then I’ll be happy!

Weight-loss 18/03

The facts

I know this chart isn’t completely correct but you’ll have to forgive me. I set this up myself and Baz has shown me how to do this properly…. I forgot!  I’m sure over time I’ll get the hang of it, but as with most things these days it’s all about learning, learning again and then still getting it wrong. The point is I’m still trying!
Luv’n’ugz to all

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Why is nothing easy?

Nearly 3 hours ago I started to write a follow-up to my weight loss, It’s now 2.50am and I’ve only just worked out, having encountered a few technical misunderstandings, how to add the excel sheet (That I’ve taken nearly 2 weeks to learn and create!) in some form or other to a Blog post! Only to then keep getting denied access by the stupid Security program that’s on my Laptop!
Spitting feathers at the moment (but its good to learn new skills eh?) and while the sensible side of me is telling me to go to bed the loud mouth stubborn side is yelling…..”But all you’ve written is a title and this is the 1st time in 2 weeks that you’ve actually got you’re shit together to sit down and start!!!!”
Bed it is though as the back is being nasty today so I don’t really want to cause a knock on effect just as I’ve started to appreciate the reduced pain levels!
In my defence, I’ve written this so it’s not all a waste of time! Lol!

Luv’n’ugs and confused cuddles x

Why have Ducks when The squirrels are raving?

Raving Squirrels, yep probably a good description of how my brain works!

 

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The (almost) Bare facts!

Hey! As promised, I’ve returned to lay the facts out in regards to my weight and current situation. It’s a day later than I wanted but as most are aware I tend to get side tracked easily. I started really researching this new med I’ve been put on and before I knew it was early hours of the morning! I decided to leave it until today but then even that idea went on its merry way off-road!

A simple job of making myself a smoothie played out like this……blitz the smoothie, whilst putting the 2nd half in the fridge I notice, apart from the lack of food (I think a shop is on the cards soon) that the door shelf needed a clean so took it out to clean, well as it was out I should clean the door. Oh look at that on the inner edge of the door, clean it and realise the dirt goes through to the freezer section. Clean that. Realise that the food is just kind of hanging in there disorganised and threatening to attack me next time I open the door. Re-organise freezer! Now that’s done I can clean the door shelf, then notice the sink is in need of an intense wash not just a wipe over, do that! Doh, I’d forgotten my smoothy so needed to blitz that again (I have a nutrient packed powdered smoothie mix that settles if left to long!). Had to clean my work area after, well while I was there I should really do a complete wash and polish of work top and glass hob tops…well the cleaning stuff was out anyway! So time to relax and enjoy my smoothie…until I realised it was 2.15pm and I had a chiropractor appointment at 3! So neck the smoothie, I rush upstairs in a panic (whilst tripping over Lola who thinks I’m now going to take her out! Nope!!) to get ready! Baz then says I told him was 4pm, quite it sure it was at 3pm. Nope he was right. Relax for a bit! My appointment wasn’t on time then I had to get milk and dinner, home for 5.30, relax with Bazman over a few programs (My 2nd watch of Stranger Things…Awesome imo!) 10pm and my laptop hadn’t even been looked at!
So now I find myself writing this at `12.30am!! That’s how it goes! Poor little Miss Manix, no walk for her today but it was probably for the best. I woke up with pain levels up in my legs it did settle a bit after the meds kicked in but I took it as a sign that maybe 30000 steps over 3 days for someone who has only just stopped walking with a stick I was allowed a day of rest! Although my, almost, 7000 steps is still an achievement I’m proud of!

On that note, I did say that I would confess. Don’t get me wrong this is more a cathartic thing for me to put out in the real world rather than me thinking anyone is really interested in my bodily statistics.
This is my version of the Guilty fridge photo to keep you away from the goodies it doesn’t really work for me, I’m more of a crisp snacker anyway!

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As you can tell by todays photo!
I did take a photo on the day I started the diet but I didn’t think you would appreciate seeing quite so much of this shapely  figure! What? Round is a shape!! lol.

I have also started a sheet to track my weight. I used to love the app for Weight Watchers when I was a member as I’d input my numbers and it would give me a pretty graph, I understand visuals more than numbers, which is also why the following picture is a copy of a word doc that I’ll have to keep re-submitting the same picture just updated. I know I could do an excel sheet thing……if I knew how excel frgging worked! Lol. I’ve found plenty of forms on Pinterest (shock horror!) but they were all printable ones that I’d have to still just add that weeks every time but I’d have to scan it first!! Me and Technology don’t have an easy partnership!  So these are my starting numbers! Ouch!

1st-weigh-in

I made a small typo on the chart above, sorry! My starting weight in pounds was actually 241.6.   **edited 28/02/2017**

So, I think I’ll leave it on that note. I plan to weigh myself weekly so on Sunday I’ll do a 2nd weigh in and then every sunday! But I hope to be writing in between as an update on the effects Orlistat may have on Eric and my tummy in general!

Luv’n’ugz and fairy wishes xxxx

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Life re-set! (Again!)

Over the years and due, mainly, to my health I’ve had to have a few life re-sets. A change in a major factor in my life. Walking away from nursing with very little skills apart from caring for people was just one of those times. Every time the change was mostly out of my hands, without sounding too dramatic (true though) if I wanted to continue living I had to re-evaluate.

When I had my ostomy surgery in 2010 I decided that for the first time in my life I was going to be in charge of my next step!  The meds that had got me to the operation had made my weight increase to just under 18 stone (about 250lb) and I was so unfit but for the first time since I was young teenager the pain had stopped!

This was going to be a whole new adventure!
To get fit and lose enough weight to get into a size 14 (uk) pair of jeans I had bought years ago and never worn!
It took just over 2 years to lose 84lb. After 6 months of exercising I was advised to stop, Eric the stoma was very active and the output extremely watery. My body temperature had never, and still hasn’t, settled down from the intense meds, this means I sweat a lot without doing a lot. So exercising really made the sweat pour off of me, leaving me with an extreme headache and feeling fuzzy headed! No amount of electrolyte drinks and dioralyte could replace the fluids I was losing. Dehydration sucks!

The weight loss wasn’t easy, even with Eric my body can’t tolerate ‘healthy’ foods very well. Fruit and veg still have a negative effect one way or another, even potatoes on some days. I can’t bulk my meals out with filling fibre and after the 1st year it became difficult to not snack as I was almost always hungry.
I knew that I would never reach my text-book weight,  the last time I was 133lb (as per medical guidelines for m height!) I was at death’s door in hospital and I did NOT look good! I set my goal weight at 175lb, when I reached that goal I was so chuffed! The 1st time I had lost weight safely and sensibly.

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I never dreamed it would end up going all back on!

So here I find myself, at the start of 2017, weighing in at 240lb. The last few years have been tough for me! I knew I would put on weight when I finally gave up smoking in september 2013 but my body had started to let me down again! This time though it was nothing I was used to. My HS (Hidradinitus Suppurativa) actually got worse, even though smoking and being overweight is supposed to be the main reasons for flare ups!  It limited my abilities to do simple tasks like get dressed. My  hyperhidrosis was getting worse, even a walk up the stairs could make me sweat like I’d run a marathon so my dehydration issues got worse. A pain in my foot, which I had lived with since I broke it in 2007, started to intrude more and more! It became virtually unbearable. You soon realise how useless most of your coping mechanisms are when you can’t even step out of bed without excruciating pain. The worst part is that due to my limping on the foot my back starting hurting, then my other leg and foot decided to chip in, nd round and round the pain went! Various Drs, tests and remedies just seemed to give me a brief light of hope before failing!  By the end of 2015 all I could see was pain. I could barely stand let alone exercise, cooking good meals was impossible and Baz was having to live with ready meals I could just throw in the oven (my excuse was at least he was getting a bit of veg with his meals lol). The long walks I used to take with my late dog Eddie was no impossible and my new Pup Lola was lucky to get 15 minutes!  My balance was shot and I found myself on the floor more times than was good. My mental health, obviously, was taking a bashing as well. So early 2016 saw me in my GP’s office, Baz with me for assistance when I lost my track of thought (Brain fog due to pain!), in tears. At the end of my tether with not 1 positive thought.
Over the year I’ve been seen by various different specialists having various tests. As of yet I still haven’t really got any answers but there is now a glimmer of hope.

A Dr who listened!!
This may seem like a no brainer, but being in the system as long as I have, along with back ground of working in the NHS, I’ve learnt this isn’t always the case! Especially when you suffer from an invisible illness.  I’ve actually been discharged from one Drs list because I refused to take ibuprofen for the pain even though I explained that I can’t take Nsaids  because of the crohns! The Dr wrote to my GP saying I couldn’t be in as much pain as I stated because I refused his treatment plan!  This is common for those of us who hide our issues deep inside!
In October I saw a neurologist. She’s sending me for more tests but she listened to me and spent time with me and I walked away with a new pain-killer (not opiate based!), a change in my basic meds (reduced my Amitryptaline and added an SSRI, sertraline, into my arsenal) and  a rough understanding of what could be causing the issues!
It took about 10 days to adjust to the new med regime but by Christmas 2016 I was walking without my walking stick! I was taking Lola for longer walks and I was thinking about the future! It hasn’t been a miracle, I’m still in pain and have realised that it doesn’t take a lot to increase my pain levels. A dance in the park will knacker me…but I’m dancing in the dog park again!!  I’m now at a place in this chapter of my life where I can start thinking happy again!

So its time to start shifting this weight again! I’ve increased my nutrients by making smoothies, for the 1st time in my life I’ve actually had spinach!  My biggest issue though is my inability to eat foods that are good for me! I don’t eat fatty foods, I don’t handle carbs or fibre very well so that’s limited and the foods I can eat aren’t that good for me! I could see no way of losing the weight!
My GP has been in talks with my GI though and they’ve both ok’d me to start on Orlistat. The only prescription Diet pill!

Today is the 18th January 2017. Today I started Orlistat!
21st Jan I’m having a full spinal and brain MRI to see if my issues are Neuropathic!

Today I danced in the park, ran with the dog and did over 10000 steps. To me this is immense!
I’m hoping this can help me with this blog as well! My plan is to try to record my journey on here, with anyone that wants to follow me and help me as a search of the all-knowing world-wide web has so far given me nothing in regards to an ostomate taking orlistat! I don’t believe I’m the first!
Hopefully tomorrow will see me in the same frame of mind. If all is good then I’ll put up my progress from today and tomorrow with some pix and my measurements etc!
Today I get to do another life Re-set!

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Taking time to just be!

 The sun is shining and there’s a soft breeze russling the surrounding trees. So how could I not feel happy, content with life as I sit and look out at this view! My Baz has gone to pick up a take away for dinner, to finish off a lovely weekend. 
 We packed up The Jazzy (our campervan!) and have spent the weekend in The New Forest with old friends. We’ve just relaxed and caught up, we’ve walked the dog and relaxed a bit more!
Life can be harsh, it speeds past us all so quickly and most of us forget to just take 5 and appreciate the beauty of this world!  Our campervan allows us to do this, even with my health problems and limitations, and gives us a chance to spend days like today! To sit for just a sort while and look out on scenes like this. It gives us a chance to just breathe and be! To understand that no matter what life throws at me it is all worth it!
Luv’n’ugz and Fairy wishes
xxx 
 

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Life happens! It doesn’t get easier!

When I started wanting to write down bits of my life the plan was to share the nice bits and funny moments. I didn’t want to write a negative post, my life isn’t easy with multiple health issues and I wanted to document the moments that keep me going…seeing past sick me! How bloody naive was that?

I have my bad days, (weeks and months as well!) but that has always been part and parcel of growing up with a chronic illness like Crohns. However, I’ve never really let it stop me! I figured out quite early on that if I let it Crohns would destroy all my hopes and dreams. I was 15 when diagnosed and only just finding out who I really was and what I wanted out of life. Ideas of college,a vocation and relationships were only just being formed in my mind so I just added living with an illness.

                                                       

Life moved on, I learnt that whilst I couldn’t ignore my health totally I was too stubborn to give in. My first few attempts at furthering my education were thwarted by Hospital stays and medication, both had a big impact on my world.

My dreams changed but the more I was told I couldn’t do because of my health the more I was determined to do it! I promised myself I wouldn’t let it beat me. Over the years I found ways of coping with 90% of my issues including the constant fluctuating pain and the embarrassment of being a teenager with bowel issues! In fact I believe that starting my adult life with Drs knowing me best from behind, soiling myself in public and normal hormonal problems gave me the opportunity to develop my core nature in a relatively unique way! If I wanted to enjoy life then I had to work harder for it. I didn’t have the media fueled support that is so readily available now, I didn’t know what the future held for some one with crohns so I tried to deal with things as they came at me.
I can’t help but think how different my life would be now if I had had the resources that are available today! Better or worse, its one of those questions we’ll never know the answer to. The internet opened up the medical world to everyone. I had thought I was alone in my fight but suddenly I had people all over the world knowing how I felt, dealing with the same issues I do.
Has this made my life any easier? I’m not sure it has and in truth I feel sorry for those with issues now that have all the facts at their fingertips. If you were to search online the symptoms of a common cold you can come away thinking you were dying of a brain tumour. This is the same with every illness. So I’ve started to feel sorry for the newly diagnosed, the future to them looks kinda grim. I never questioned my specialist when he put me on meds, he’s done the training and knows more than me, now people are quick to look for side effects and turn down life saving tablets because some have bad outcomes. I do blame 25 years, give or take, of prednisolone for the damage to my body now. I hate them, I always have, but they have saved my life more than once or twice so it breaks my heart when I see people refusing to take them because they’ve read other peoples experiences but what worries me more is people telling others to seek out opiate based pain killers at early stages, saying that we shouldn’t be left in pain.
I never knew this, my pain was dealt with with soluble paracetamol and buscopan. The pain was part of Crohns it molded me and guided me. I only ever had morphine when in hospital and in the years before my major op, I didn’t like taking them but when my intestines were so swollen they created a permanent dent in my spinal chord and the meds saving my life made my joints into balls of fire I once again accepted the knowledge of the specialists and added Tramadol to my list of pharmaceuticals! Before long though my body had adjusted to them and they no longer helped the pains. I see a future filled with more pain and operations, its chronic illness fact 101 so I can only wonder how I’ll cope. This illness, like life, is degenerative. It will get worse and what will the future hold when my body is already maxed out on analgesia just to get through a ‘normal’ day?

With every new pain i’ve acquired, some with a diagnoses and some without, I’ve still denied myself the last line opiate meds for every day use. I don’t do this to be a matyr, I do it because I’ve always thought life was wonderous with so many things to see and do. My pain already makes my memory hazy and my body lazy that i don’t want to dull my senses anymore. The drawback to this though is that what started out as constant but copable pains turned into a few days of pain leaving me restricted has now grown into an everyday event!  The activities I’ve always relied on to take my mind off the pain are now virtually impossible to do. My positivity eaten away by the Dr’s inability to help me, how can they? They only see 1 issue at a time, whether major or minor, and assume that i can live with whatever it is. The thing is they aren’t all that wrong. I not only lived with Crohns I also enjoyed life whilst living with it! I’ve done things in my life that some healthy people haven’t done and I’ve done it whilst being in constant pain, toilet trips up to 30 times a day and suffering from malnutrition but I cannot isolate my illnesses. Its like a constant dripping tap in a plugged sink. Every drop landing on top of the last increasing the volume until the sink overflows! That’s like the pain with my illnesses. Every one of them is just another drop but all together it’s a flood! It makes all the little aches and annoyances a lot to handle on their own but added to the major pains they are crippling me! My heart and head want to fight this but my body is letting me down. I can’t see major pain relief will do anything to help me live life, they’ll just dull my senses so I don’t feel so bad about not being able to enjoy life.

That then leaves me in a dilema. My mind is still very active, I still have things I want to do, new and repeats. If I take the opiates I won’t be in pain but the world will lose it lustre. If I stay off them my body won’t let me do anything but survive day to day. Either way I still have quite a bit of life left to live never being what i actually am. A social butterfly born to appreciate life at its best!

I’ve allowed the pain to get control though, of body and mind.  Being unable to work, socialise or participate in normal life has given my body the chance to rule my head. Why try? Why do things? Especially if that then leads to an increase in my pain levels? Why?

Because This Is Life! This is my life. The medical world seems unable to help me with it, those around me have their own lives to trudge through and my body isn’t going to stop this onslaught so my only option is to continue fighting. To find a way to fight stronger! Because the alternative isn’t even a choice!

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10 Ways to be an Amazing Friend to Chronically Ill People

Chronic Illness Friendships:

Source: 10 Ways to be an Amazing Friend to Chronically Ill People

So very true, friends move on with their busy lives and I’m here, 40 years old and I’m lucky if I get a conversation out of my very tired hubby once a day! I don’t make phone calls, but I will answer if I know who’s calling, my closest friends have moved on and away in hopes of better lives so my life is through social media which is great that I’m meeting people from everywhere possible but I have no social network near to me. I could go to support groups but I am ill and the last thing I really want to do is socialise with people who are in the same boat! I feel we need those who are quite the opposite! Someone who doesn’t pity, sympathise or pander to our illnesses instead make us laugh at daft things, randomly surprise us with little projects, I was once asked if I could create a beach theme for a kids birthday but with a limited budget….I loved doing it and the child was awestruck, made me feel l had contribute just slightly to the real world! xxxx

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And that was 2015!

Hello 2016!

Happy New Year to all.

I wonder what you have in store for me? These past 365 days have been…..long! I can’t say its been a very bad year, there’s been worse yet I’ve had better.

2015 was the year I’ve been told to dread by some and look forward to by others, this year I turned 40!

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Apart from feeling very loved at my party and simply blown away with my cake (I mean who wouldn’t be…..it has everything that I loved including cake?) My fantastic pain in the bum husband, Bazzy, showed me again how much he loves me (He doesn’t spoil me often but when he does its a doozy!) by organising and joining me on ticking

another Bucket List item. I was taken to USA,  primarily so I could see New Orleans but we took 3 weeks and drove from Miami through Florida and the Everglades into Louisiana and then up to Georgia to see an old family friend (‘Aunt’ and ‘Uncle’)  and in between I scrubbed off 2 other minor BL items. Blasting through the glades on a hoverboat and swimming with Manatees. I still believe though that probably the best bit of our trip was realising that  my love for Bazzy and our spark that bought us together is still there.  After 10 years marriage, him working his socks off and me now medically retired our day to day living has become a bit mundane, something I want to fix this year, but if we can survive what was virtually a 3 weeks road trip together I know our relationship is just as strong, maybe different, as its always been. Something I need to remember when I get cabin fever bored and he’s too tired to do anything but eat and sleep.

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I’ve had a few pleasantly unexpected moments in the past year as well, a return to The Ministry of sound, a club I thought I would never see again after spending so many of my weekends in the late 90’s there and a party on a boat docking on Temple pier, another club event from the same time.  Acquaintances have become good friends as well and old friends have come back into my life. So on the surface life has been positive for me.

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Unfortunately life always has a way of balancing out, I’ve lost a few good friends this year like my beloved Amy and 1 friend I seem to have upset somehow, I have an idea how but my aversion to calling/contacting has increased and my attempt at written contact with her lead to silence. I fear I may have lost one of the special ones! A true good soul, big hearted angel.

Sometimes I hate my anxiety issues,  especially when combined with my ditzy unorganised brain.

Altogether, my health hasn’t been great. Nothing major, its lots of the little issues just piling up and up. Working against each other but linked at the same time.  So my time has mostly been spent on my own, with usually the only reason to leave the house is to walk the dog.  Its true though, that inactivity breeds inactivity. Days blur into one where nothing productive has been achieved and I’m either unable to sleep (Dehydration and restless legs!) or unable to wake up, usually a monthly event or if I get a H.S. flare, for days. The longer this goes on the more I isolate myself and a lonely bored fairy is never good! I’m sitting here surrounded by jobs my OCB is yelling need doing but lack the body capability to do so I start lots of jobs and never finish any really!

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I’ve just sat and watched the sun come up on 1st January 2016 and I’m feeling determined! I don’t make resolutions but I’ve decided I need to find the real me inside, the fighter. I need to start sorting things out. If I can get the little health issues sorted then I have a good chance of pulling myself out of this rut. Get the overheating/excess sweating under control and the dehydration, RLS, HS flares will become easier, at the same time sort my foot out. Who would ever have thought that 2 numb toes could lead to so much pain and discomfort, having a knock on effect on my other foot, my knees and my back. If I can get a handle on the pain then a positive mind will follow! I Hope!

So my resolution, or maybe better to say my promise to myself today and in writing is that over the course of 2016 I will get my Sparkle back in place. It will be polished and shining bright and I will have control of my body again……and my life!

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Take a look at @lornamary_1981’s Tweet: https://twitter.com/lornamary_1981/status/674359262383095808?s=09

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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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