Author: Conscious Crafties Stories

Posted on 15th June 201620th April 2017 by Conscious Crafties Stories — Leave a comment

Would I ever be able to sing and dance again?

Amy Oestreicher artist, Gutless and Grateful

It all started with a dream.

I grew up doing musical theatre.

Let me rephrase that. I grew up thinking my life was a musical. Call it the “theatre bug”, call me a “drama queen” or a great big ham – I lived for the world of the stage. For me, singing and acting were ways I could connect with the world around me. When I took a deep, grounded breath from my gut, I sang what my heart longed to express. I found comfort in the words of my favorite composers. I read scripts like they were novels. I would play with my playbills from various shows I had seen like they were my Barbie dolls. Through theatre, I had a place in this world. I could make believe by inserting myself into characters from every era, situation and mindset, while still expressing my own individuality.

I was the kid who got sent to the principal’s office because when the teacher left the room, I would jump on her desk and start tap-dancing. I was the girl who forced every unwilling classmate to join me in a Les Miserables medley, assigning them their designated parts to pass the 30-minute school bus ride.

Amy Oestreicher starring in her one-woman musical, “Gutless and Grateful.” — Amy starring in her one-woman musical
“Gutless and Grateful.”

Even all the way up to high school, I was the theatre-girl. It was my identity, my passion, my livelihood. I sacrificed my social life and gave up many opportunities to immerse myself in what I loved.

I’ve always been warned not to put all of my eggs in one basket, but theatre ran through my veins – it was all I thought about, lived and dreamed. I’d write songs in my assignment notebook as I waited for the school bell to ring, then hop on the train to the next open call I’d read about in Backstage. When I fought with my brothers, I could only debate with them if we could do in the spirit of a musical theatre duet. They weren’t so keen on that.

So what do you do when you’ve invested everything into your passion and you can’t follow it anymore? I’ve always thought about what would a world-concert pianist would do if he injured his hand, or a dancer breaking a leg…

…but sprains heal and wounds can eventually mend. Dire circumstances felt much more long lasting; when at 18 I awoke from a coma. Although the medical staff—that suddenly became everyday faces—was more concerned about keeping my organs and me alive, I was still trying to grapple with one frightening new concern:

Would I ever be able to sing and dance on stage again?

With a ventilator and a tracheotomy, I couldn’t even talk. From months of bed-rest, the first time I was able to stand up, I was alarmed at how they trembled, as if my legs were Jell-O. I lost the energy to even think about what I loved, and being unable to eat or drink in these new medical circumstances turned my once-steady focus to mush and irritability.

I remember asking every person I could find in the hospital if they thought I would ever be able to sing and dance again. I was faced with many apologetic “I don’t knows”, sighs, shrugs, and awkward changing of the topic. However, I remember one occupational therapist gave me words that to her, felt like words of encouragement. She looked at me compassionately, and said, “You never know – the human body is amazing. I had one patient who showed no signs of hope, and a year later, when he was discharged, he only needed a wheelchair!”

(These were not exactly the words of encouragement I was looking for.)

With time, patience, and dogged determination, I was eventually discharged from the hospital. What I’m glossing over are the multitudes of surgeries, setbacks and frustrations, because what was the most important was my passion – I never forgot how I missed the stage. Even not being able to talk or stand up on my own, I still visualized me singing and dancing. Without theatre, I felt disconnected, purposeless, a has-been. I missed the vibrant girl I remembered being the first to sign up for auditions, now condemned to a realm of medical isolation.

I had always had a dream of combining song and dialogue in a show of my own design. I love the idea of storytelling through theatre, but as a teen, I didn’t really have much of a story to tell. But sometimes, a setback is an opportunity in disguise. Suddenly, I had a tale of hurdles, triumph, and heart.

Eight years after my coma, I was finally headed towards a life of medical stability. I learned through experience that things can heal with time, and that’s not always the prettiest or easiest way. It was an extremely difficult journey, yet when I started to put together a musical of my life, things felt like they had happened for a reason. Now I had a story to tell, a message to share.

My one-woman musical autobiography, Gutless & Grateful, started out as stapled pages of my journal – a few pages from the thousands of journal entries I had completed when unable to eat or drink for years. I selected 16 songs—some of which I had written – that had always resonated with my journey and me, and loosely strung them together to sing for my own therapy. I’d perform Gutless & Grateful for my parents, my dogs, but mostly for myself. Through the songs, I could allow myself a safe place to feel the charged emotions I was still trying to process from years of medical trauma.

I called it my “world in a binder”. My parents called it “Amy’s little play.” It was no surprise when I had many looks of concern and gentle warnings when I decided to book a theatre in New York for my world premiere!

I performed Gutless & Grateful for the first time in NYC in October 2012. It was a frightening, bold, vulnerable, and breathtaking experience. In it, I told everything – the pain, the medical, the joy, the infuriating – with music, drama, and humor, most importantly. I had played “roles” before, but for the first time, I was honestly revealing my own medical and emotional struggles for hundreds of strangers every night. It was a risk to lay my soul bare, but the reward was in how my own vulnerability caused others to become vulnerable and moved by my own struggles.

Since then, I’ve been performing it in theatres, hospitals, and groups in need of any kind of inspiration and encouragement. When I realized how combining powerful firsthand experience could transform lives, I developed my little-show-that-could into a mental health advocacy and sexual assault prevention program for students. Nearly losing my life at 18 years old, I’m now reaching out to students at that same pivotal point in their own lives.

Medically, my life is far from perfect, but now when a surgery goes wrong, I use it as more material for my show – if we cant learn to laugh from hardship, we can’t learn anything. And for me, when I learn, I feel alive – that just as trees grow, change and evolve with every season, I can too.
Through Gutless & Grateful, I’m sharing my story and helping others find the gifts and the gratitude in the hardships. And in healing other people, I heal my own self a bit more every day. I’m not there yet, but just like my show – I’m on the road.

As a performer, all I want to do is give back to the world. Being up on stage and singing is one part of the joy, but what brings the process full circle is knowing that somewhere in the audience, I am affecting someone and making them think in a different way. That is the power of theatre – stirring you to see things differently. Doing what I love, my passion once again can freely flow through my veins, and I’m a person now, not just a patient or a medical miracle. Passion may not heal 27 surgeries, but passion has healed my heart. My passion has re-anchored me in who I am. And for that, I am Gutlessly Grateful.

Amy Oestreicher

Speaker, Artist, Author, Performer, Playwright, Actress, Survivor, Writer for Huffington Post

*Celebrating Life’s Beautiful Detours*

#LoveMyDetour

Posted on 9th May 201611th January 2017 by Conscious Crafties Stories — Leave a comment

Why My Chronic Illnesses Won’t Stop Me From Being a Writer – READER STORY

Ever since I was little, I’ve wanted to do two things: be a writer, and work with animals. At one point I wanted to be a vet (even though I don’t particularly like the sight of blood), then I wanted to go into animal conservation. I’ve always loved the idea of working at a zoo. I had these big dreams of all the work with animals that I’d do when I was older. And in my spare time, I’d fulfil my love for writing, creating imaginary worlds where anything was possible.

But, when I was a teenager, I became really ill.

The strange symptoms first started around the age of seventeen, and all my doctors were baffled. Many just wrote me off as “an anxious female”, saying it was really common for teenage girls to faint for no reason. But, when I was nineteen, and after many tests and many doctors, I found out that I had some pretty rare conditions: I’d been born with Ehlers-Danlos Syndrome (a genetic disorder where the body produces faulty collagen) and, because of this, I also had several forms of dysautonomia (autonomic system dysfunction that affects almost every part of the body), including Postural Orthostatic Tachycardia Syndrome, meaning my autonomic system doesn’t work properly every time I’m upright—sitting, standing and walking.

These diagnoses explained a lot of the symptoms I’d been dealing with for the last few years. But knowing that I had these chronic conditions—EDS is genetic; it’s a DNA error—and that a lack of research meant none of them yet had a cure made me worried. I suddenly saw everything in terms of what I couldn’t do. And it was around the age of nineteen that I really understood what this meant, and the impact it would have on my life. With my conditions—the frequency of my fainting, and how my autonomic system no longer works when I’m in an upright position—unsurprisingly, I’m not allowed to drive. It would just be too risky. I don’t always get warning before I faint (and often my faints look like fits), and I get problems with my vision thanks to a lack of oxygen to my brain when I’m upright (sitting, standing, and walking).

But these illnesses also limit the amount of physical work I can do. Every time I’m upright my autonomic system malfunctions, and sometimes, I can barely stand up without getting a heart rate that’s in the 200s even when I’m doing nothing but standing (yeah, my autonomic system really doesn’t work thanks to POTS). I also faint frequently—which can do a lot of damage in itself, if I faint when I’m standing up—and I’m constantly dizzy; even moving my head from side-to-side can trigger an episode of autonomic dysfunction (during which I literally cannot do anything but lie still and wait for it to pass). And that’s not to mention how fragile my joints and muscles are due to the error in my DNA (Ehlers-Danlos Syndrome). I’ve dislocated major joints just walking—which sounds ridiculous given that I used to compete at athletics and cross-country running. But apparently it’s not unusual for those with EDS to be less affected by it when they’re younger, so much so that they don’t realise they have the gene until they get older and start experiencing the symptoms.

Pretty soon after my diagnoses, at the age of nineteen, I realised I most likely wouldn’t be able to work with animals as a career. Not only could I not drive myself to such a place of work, but also I’d probably end up collapsing or fainting after being upright for a little while, and I’d be too nauseated, due to autonomic dysfunction, to do anything. Just a short walk can leave me exhausted, thanks to this condition. And besides, my joints would be dislocating and subluxing the moment I tried to carry anything.

This is where my writing really came in.

Now, don’t get me wrong, I’ve always loved writing. It’s not the case that I got ill and then I started writing. No. I was writing seriously from the age of nine or ten; writing has always been one of my dreams. I had my first short story published at the age of sixteen, and when I was seventeen I completed my first full-length manuscript of 137,000 words. Writing is just part of me. It’s who I am and I have to write. It keeps me sane!

But, realising that I wouldn’t be able to work with animals, and that a lot of jobs would be nearly impossible for me to do in my current state of health, really made me focus on writing. It made me determined to be a successful full-time writer, because writing was one thing that my illnesses hadn’t stopped me from doing.

Even though I’m unwell and unable to move much due to my faulty autonomic system, I can still write. And I can fit my writing around the crazy number of hospital appointments I seem to have most weeks.

I’d always been a voracious reader, but now I read as much as I could get my hands on, and I wrote in every spare minute I had. It was escapism from my illness partly; when I wrote I wasn’t just this sick girl, I was a writer creating amazing worlds and I was living through my characters. But it was also something more. Writing was part of me. I had to do it.

I sent more and more short stories out until I had over fifteen accepted for publication, and then I began concentrating solely on novels. I wrote and then rewrote what I had, countless times. I set myself the goal of writing 2,000 words a day and I soon settled into a routine where I’d try and meet that word count. Some days I managed it. Other days (particularly if I’d had a bad episode, or a hospital appointment) I didn’t.

But I kept writing, determined to write a book that a publisher wanted. With every novel manuscript I wrote, I could see my writing getting stronger. And it was my fourth full-length manuscript that really worked—and four publishers made offers on it.

Aged nineteen, I signed my first book deal.

A year later, my debut novel, Untamed, a dystopian story about addiction, loyalty, and survival released from Prizm Books, the YA imprint of Torquere Press, in both paperback and ebook formats.

By this time, my illnesses were getting worse, and I was struggling to attend even a couple of hours a week at university. I was unwell all the time, and in a near-constant state of presyncope that could (and regularly did) develop into full-on fainting at any moment, as my consultants had yet to find any medications that helped manage my symptoms. I really began relying on my writing. And, it was during my third year at university, after I’d written a new manuscript and signed my second book deal, that I fully realised I wasn’t just a chronically ill person, I was an author as well. Sure, I’d realised I was technically an author during my second year at university, when my debut novel released, but a part of me hadn’t actually believed it then.

But now I realised what I’d done: I’d achieved one of my dreams—arguably my biggest dream—despite being chronically ill. I’d proven to myself that just because I was ill, it didn’t mean I couldn’t achieve anything. I could still be the writer I’d always dreamed of being.

Fast forward to the present day, and I’m 21, and my second novel, Fragmented, is set to release on 7th September 2016. Even though my health is still the same, and my consultants haven’t yet been able to find a way to successfully manage the daily symptoms of my illnesses, I’m currently working on the first drafts of two new manuscripts, as well as editing a third. And last month, I also managed to finish my degree—at the same time as all my friends. I’m pretty sure this was because I had writing to fall back on during those agonising weeks when I thought I’d never manage all the university work. Writing comforted me. And I’m so grateful that writing is one thing I still can do, when there are many things I’ve had to give up (horse riding, athletics, gymnastics, cross country, etc.).

This is why I won’t let my chronic illnesses stop me from being a writer—from being who I am. Because writing gives me an identity, it gives me something to hold onto. I may be chronically ill, but I’m also a writer.

And I have to keep writing.

About Madeline Dyer…
Madeline Dyer lives in the southwest of England, and has a strong love for anything dystopian, ghostly, or paranormal. Her debut novel, Untamed (Prizm Books, May 2015), examines a world in which anyone who has negative emotions is hunted down, and a culture where addiction is encouraged. Madeline’s second novel, Fragmented, is set to release on 7th September 2016, from Prizm Books.

For more information, please check out her website. Follow Madeline on Twitter, Instagram, Pinterest and like her Facebook page to receive the latest information about Madeline’s writing.

Buy Untamed by Madeline Dyer
– Amazon UK
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Posted on 26th April 201622nd May 2016 by Conscious Crafties Stories — Leave a comment

From Private Detective to Carer and Artist

As a young man I trained for 5 years as a Ladies and Gents hairstylist in Leicester. My hobbies were fishing and Martial arts, i studied the Chinese martial art of Gung Fu and attained a black belt 3rd dan. After a few years I found myself working in Germany which I loved and my wife and children all joined me for a few years. It was on one of the journey’s to Germany that I first became aware of my neck problem, suffering terrific muscle spasms in my neck and shoulders, this continued for many years and the pain levels grew, on our return to England I had many hospital appointments, a CT scan and the diagnosis was “hot spots and irregularities in the C spine” (they gave really detailed diagnosis in the 70’s!). My problem was later diagnosed as Spondylosis or Spondylitis i can’t recall which! I was given Tramadol an opiate based pain killer and other pain relief which helped but did not take away all of the pain.

As the years went by the pain became stronger and ever present as it still is today, I recall myself sitting and crying in pain with my wife’s arms around me on many an evening after I finished work. By this time I had started two new companies away from hairdressing, one a Private Detective Agency the other a Security Company and was working 14/16 hours a day, fortunately I must have a strong constitution as I was always able to go to work and work through or in spite of the pain.

Dog Pastel Portrait, PetsPortraits4u — Dog Pastel Portrait
PetsPortraits4u

I spent several thousands of pounds over the years looking for alternative pain relief, having tried all the obvious, I went for energy healing and did find some relief and at about this time I also found a magic masseuse called Suzanne who like many are, was not afraid to go in deep, she was able to break up the tightly knotted muscles in my neck and shoulder after about a year of weekly visits, this allowed me to actually turn my neck a little from side to side after many years of not being able to, over the next few years my pain slowly went down a rung or two thanks to the healing and the marvellous masseuse I had found.
Having had “some relief” from pain for the first time in many many years I though that I could perhaps also help others that suffered with chronic pain and trained in Tera Mai Reiki Seichem becoming a Tera Mai Reiki Seichem Master and also as a Reconnective healing practitioner, through which I was over the years, able to give relief to many other chronic pain sufferers (but not myself!) mainly using Reconnective Healing energies which seemed more effective than Reiki.

Cat Pastel Portrait, PetsPortraits4u — Cat Pastel Portrait
PetsPortraits4u

In my retirement and still in pain 24/7 (and still something of a workaholic!) I caught up with an old school friend on friends reunited, she told me that she had MS of which I knew nothing, some years after this her husband passed away and some months later I was reasonably close to North Wales and arranged to meet with my friend from my school days for a meal, we got on well and I began to learn a little about MS. I started to visit her to help out on occasional weekends and at times when she had multiple medical appointments and seeing what she went through to be able to carry out the simplest little task really had me in awe of her single minded determination, the help visits became more regular and now I am her main carer, staying for perhaps a couple of weeks, enabling her to do the things she enjoys and get regular exercise sessions at the gym, then having a few days break before beginning again.

My friend actually classes herself as lucky, because although she has MS she suffers no pain, lots of other difficulties but no pain for which she is very grateful (but how anyone with MS can consider themselves lucky I don’t know) she has lost the use of her left arm and left leg, and struggles to manage even the simplest task, she has been a yoga teacher for over 30 years and still teaches from her wheel chair having adapted many exercises for chair bound people, she has taken over 700 yoga classes at the Neuro Therapy Centre near Chester and does everything she can to enable her to live an ordinary life. My heart often goes out to her as I see her struggle with a task, but I have now learnt the things that I must let her do herself despite how long it takes her or how difficult it is for her, it’s hard to watch sometimes knowing that I can do it for her, but she needs to do it herself, that was the most difficult thing for me to learn as a carer.

Horse Pastel Portrait, PetsPortraits4u — Horse Pastel Portrait
PetsPortraits4u

I find it very rewarding that I am now able to make life an awful lot easier for her, and enable her to live a normal (ish) life. I have free run of the kitchen which is great! I’m even allowed to do the washing up, although she says she occasionally has to re wash items!! It’s a man thing how we just leave an item with a stain or tiny bit of food on that a woman’s radar spots from 100 yards and we can’t see from six inches!

Anyway I have missed a bit out as before re meeting with my friend after many years, my masseuse told me on several occasions to ask my Doctor to test me for Fibromyalgia, when I finally got round to it I was given a positive diagnosis which explains all of the additional pain I have been getting over the last few years and the horrible tiredness and lack of energy, waking up feeling like a soggy sack, trying to remember what was a dream that you thought you had. It’s known as ‘Fibro Fog’ which is really weird sometimes, so caring for my friend although very difficult at times (as she really does not understand what pain is and why I can be so down and useless one day and ok another!) but it keeps me busy and I get an awful lot of satisfaction from being able to make her life easier, despite having lost the use of her left leg and arm she is always happy, cheerful and smiling. I find it amazing the way she copes with her disability and (most days) really enjoy being there for her.

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Posted on 16th April 201617th April 2016 by Conscious Crafties Stories — Leave a comment

Drawing Helped Me Get My Life Back

Rosalind Batty, North Mayo Art and Photography

Hi my name is Roz, and I’m a 32 year old married mother of 3 girls, and also a coloured pencil artist.

I’ve always had a love of arts and crafts. From a young age I would doodle and draw, paint, make things and generally make a mess. As I got older I decided that I wanted to study art, and took an extra GCSE in art, so I studied both 3D and 2D art. I loved the variety of materials that I was able to use, from pencils to paints, and clay to fabric. I got the grades that I needed to study art at A Level and that was when my love of drawing really started. I decided to concentrate on graphite, and that was what I have worked in until recently. I would spend a couple of months drawing from magazines, or photos of animals, improving my techniques as I went along, and then put it all away when life got in the way. When I had a bit of spare time, I would get it out again and improve my techniques a bit more, but never worked on it consistently over the years.

I was also quite active when I was younger and would walk for miles every day, swim, bike ride and generally keep quite fit and healthy. But that all changed when I became pregnant with my eldest daughter.

From early on in the pregnancy I knew that something wasn’t quite right. I knew that I would get aches and pains, but the pain I was getting was a lot worse than I expected, and it continued to get worse from week to week. I was having trouble walking and had unbelievable pain in my pelvis and hips. I mentioned it to my consultant, who told me that it was normal stretching pain and I was making a big deal out of nothing. I was refused physio and told to get on with it, so I went to see a physio privately, who diagnosed me with SPD (Symphysis Pubis Dysfunction, or PGP as its now called).

It continued to get worse throughout the rest of the pregnancy, and it caused complications for the birth (which I don’t need to get into) I also dislocated my coccyx (which is still dislocated 12 years later).

The same thing happened during the second pregnancy, but it was a lot worse and came on a lot quicker. Unfortunately I had the same consultant again, who told me that same thing ‘Its just stretching pain, stop fussing’ only this time it was so bad I couldn’t walk, had to be helped to do everything by my husband and was in such an awful state that I spent a lot of time crying and wishing it was over. This time my physio gave me the news that I had had a Spontaneous Symphisiotomy (where the pelvis basically splits in two) I was given crutches and a support belt and told to rest. I was referred by my physio to a women’s health physio at the hospital who specialised in pelvic problems in pregnant women. She couldn’t believe the state I was in. Again it made for a difficult and painful delivery.

Roz's Grapes on a vine — Roz’s Grapes on a vine

Unfortunately whilst my pelvis was in two parts it twisted in opposite directions, and when it did fuse back together my hips were out of line, it effected my spine, my coccyx and my Sacroilliac and Symphysis Pubis joints.

The third time was better. I was under a different consultant, a woman this time, who had read my notes, knew the condition and got the ball rolling to get me all the help that I needed. I was given physio all the way through, was put on bed rest, was given a support support belt and the physio was there during the delivery to make sure that my pelvis wasn’t flexed any more that was safe to do so.

I was also referred to an orthopedic consultant who I am still under today. I have been diagnosed with Diastasis of the Symphysis Pubis, Scaroiliitis, Dislocated Coccyx, a Prolapsed Disc in my lower spine, my hips are 2″ out of line and I have severe and constant Sciatica. I am under a gastroenterologist who has diagnosed me with IBS too, and have intolerance to wheat, lactose, soya and caffeine.

I am in constant pain to this day with my pelvis and lower back, I have to use crutches most of the time, and have a wheelchair. I have also had to have the house kitted out with home aids to help make my life easier. I am allergic to painkillers so can’t take anything for relief. It gets really hard to cope with it all some days and I do get very down, but I have fight for my girls. I was trying to take my mind off my pain by card making, sewing, and crocheting, but have had to stop all of those due to the pain, lack of mobility and energy and my more recent diagnosis of Fibromyalgia and Raynaud’s Disease.

Roz's Leopard Sketch — Roz’s Leopard Sketch

I noticed a couple of years ago that I was feeling pain more widely through my body, I was also feeling exhausted all the time, couldn’t concentrate on anything for any amount of time, and generally felt unwell. I was also extremely susceptible to the cold too, and got blisters on my hands and feet.

It got to the stage that I couldn’t do any of the crafts that I loved to do. I had hit rock bottom and couldn’t see a way out. I had nothing in my life other than extreme pain. I had to stop driving, which I loved, stop all of my crafts, I couldn’t go out, couldn’t manage around the house by myself, and had to rely on my husband for just about everything. Even my girls had become carers for me, fetching and carrying things for me as I struggled around the house on my crutches. I couldn’t do anything with them as the pain was so severe even the smallest movement brought tears to my eyes. I was on the brink of a breakdown and couldn’t see a way of getting out of it. I knew I had to do something, but didn’t know what I could do when I had so little going in my life.

I went to my doctor and explained how I was feeling, and he immediately diagnosed me with Fibromyalgia and Raynaud’s Disease. He told me that it had been caused by the trauma that I had been through with my pelvic problems and referred me to a Rheumatologist. My Rheumatologist is great. As soon as he saw me during my initial appointment he officially diagnosed me and we started on a medication plan. Its taken a lot of work and a lot of tweaking my medications to find some that I’m not allergic too, but I’m now on two different medications that do seem to be helping my symptoms. I’m also getting regular steroid injections which help too.

Custom drawn cat portraits and animal portraits — Custom pet portrait

Don’t get me wrong. I am still in a lot of pain on a daily basis, and there are still days that I cant get out of bed, but they don’t come as often now.

I’ve also started up my love of drawing again. I decided that seeing as there are so many things that I can’t do, I need to find something I can do, and I have all the materials that I need right here in the house to start drawing again. I have also branched out into coloured pencil work in the last 11 months, and am having a fantastic time using them. I do have bad days when I don’t feel up to drawing, but it takes my mind off how I’m feeling and I brightens my spirit when I do feel up to it. I have had to adapt how I sit to draw, and have to have a lot of breaks, as sitting in one position causes a lot of pain, but I work in stages, and don’t mind if a drawing takes me weeks to complete.

If it hadn’t of been for the support that I have received from my amazing husband and children over the last 12 years I don’t know how I would have coped. They have been there, and continue to be there for me, day in and day out and I am so grateful for that.

I will have to deal with my conditions for the rest of my life and my pelvis and hip problems will get worse in years to come, but for now I am enjoying being able to draw again, and getting a bit of my life back.

Thank you for reading my story

Roz

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Posted on 8th April 201611th April 2016 by Conscious Crafties Stories — Leave a comment

READER STORY – My colon ruptured on the table!

Karen Hunter - my colon ruptured on operating table

Karen Hunter crohns disease — Karen Hunter
Knits by Karen

When I was 25 I became ill, but they didn’t know what was wrong as all my tests came back clear. Eventually they took me to theatre to open me up to see what was going on. My colon ruptured on the table and I woke up with an Ileostomy, it was later discovered that I had Crohn’s Disease. It was hard to come to terms with having to wear a bag for the rest of my life. Over the next 13 years I was in and out of hospital for various procedures and operations.

In 2008 I was taken in so they could remove adhesions as they were pulling the stoma back inside me. The operation went well and I was recovering, until 10 days later, when I was in an awful lot of pain, it turned out my bowel had strangulated itself, so back to theatre where they removed even more of my bowel. I then contracted MRSA, septicaemia and internal bleeding. Back to HDU, then transferred to another hospital, my mother was told for a second time that they didn’t think I’d make it through the night. I did but I was in so much pain, it was put down to going through the operation, but it carried on for months and to this day I am still in constant pain, which has got worse and worse.

I’ve been diagnosed with Abdominal Cutaneous Nerve Entrapment Syndrome. I am on a very high doses of pain medications, I have had a couple of Nerve Blocks which have given me short periods of pain free but when they wear off the pain comes back. I have been told that they don’t want to operate on me because of what happened last time. So this is me for the rest of my life, in constant pain, I haven’t worked since 2008 and it is doubtful that I will ever again. That is why my crafting is so very important to me.

I have knitted since I was about 5 years old, mostly for my sisters children or for charity. A neighbour asked me to knit a hat for her son and she was so pleased with it she told me I should be selling them. It took a lot of persuasion but Knits by Karen was born, I sold by word of mouth. I managed to get someone to teach me crochet as I’d always wanted to learn and things really took off. I did a few Craft Fayres and I started getting lots of orders. To me knitting and crocheting is keeping my brain active, I’m also speaking to people, something I had almost stopped doing when I became ill. I’m not able to do it all the time, but I find if I can concentrate on making a hat or cowl, it gives me something else to think about other than my pain. I also got a Shih Tzi puppy 4 years ago and he has also helped me immensely. If I didn’t have my knitting and crochet I really don’t know what my life would be like, a lot worse than it is at the moment, that’s for sure!

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Posted on 29th March 20163rd August 2018 by Conscious Crafties Stories — 1 Comment

When your glass doesn’t seem “half full”…..smash it up! – READER STORY

23 years ago, I was an at-home mum with a fab toddler, Cameron, so I thought I’d have another baby. Half way through the pregnancy, I was admitted to hospital with some very odd symptoms. I packed knitting, crochet and cross stitch immediately.

A difficult 8 weeks later, when Roseanne was born, I was handed an A4 piece of paper, both sides were covered with a list of her problems.

Rose was then in hospital for nearly a year battling through no swallow reflex, heart failure, meningitis, a stroke etc etc .

During this time, with a hubby working away, toddler Cam and I went to bed around 7.

Fused glass Sheep Baubles for Sheep Bunting

I would then wake about midnight. What to do?

So I started crafting-in-bulk! I’d always crafted, but during this time, as the sun rose, I would be found standing still in pjs, surrounded by cards, embroideries, paintings.

I trialled selling some, and reinvested any money into more envelopes and bags.

Once Rose came home, it was quite difficult to go out as she was tube fed 8 times a day, and often on oxygen and needing suction. So every nap I sewed, painted or glued.

Our house had a horrid damp cellar, but we tanked it and added heating and set up a nurse call system for Rose and here grew and grew my crafting haven.

As the years went on, many, many more hospital stays led to more manic crafting, both at home and often on the hospital wards too. It kept me sane (debatable). We even chose to have another baby, and Mackenzie was added to the bedlam of the Weir household.

About 10 years on, I was just starting to imagine going back to my work as a primary school teacher. Rose was still tube-fed, but overnight, and her medical emergencies were lessening. I was finally coping.

We were driving back from a cinema matinee. The car skidded on spilt diesel as we were going up a motorway slip road. The safety barrier flipped us and we rolled down the embankment. We landed on a path upside down, blowing out all the windows and crushing the car’s structure. The car then carried on sliding, and rolled into a canal .

Cameron dived 3 times and rescued Rose and Mac. Finally got my legs free and helped.

Unfortunately my hubby had been under the water too long and had started to drown.

He was left with brain damage.

Over the next 10 years he battled back, and can now walk and talk, and recently has actually begun driving again. It was an extremely difficult time, but again pj moonlight crafting, waiting room crafting and my now precious dungeon/cellar helped me through.

I had a kiln fitted and when life gets really hard, I go down, smash up glass, and then melt it back together.

About 3 years ago, as hubby improved, Rose also began to come on in leaps and bounds. At 17 she began to be totally orally fed, and at 19, even came out of nappies.

Beryl Weir, Crafts from the dungeon — Beryl Weir
Crafts from the dungeon

I announced out loud on a walk with the dogs, “This is going to be MY year”.

Yeah…

I found the lump 3 weeks later.

So 2 ops and waiting rooms and radiation and severe reactions to radiation.

By gum, I smashed up a lot of glass during that time!

I also started to take another passion, weaving, to a higher level, treating myself to bigger and better looms. Even took one into isolation for during my glowing therapy!

So now….Shhhhh….don’t tell the gods, but I’m having a ball!

My health and their health permitting, I work with glass in the morning, and fibre in the afternoon.

I spend my evenings combining the 2 into kits.

I’m teaching from home and do talks to guilds and crafty groups.

My crafts were only ever meant to cover their costs, so I reinvest any income into more luscious materials or gadgets.

Ain’t life grand!

Posted on 1st March 20168th April 2016 by Conscious Crafties Stories — Leave a comment

READER STORY – Kidney transplant survivor turned author!

Hi! I’m Hannah Reimers. I’m a 24-year-old geek who loves Disney World, penguins, my cat Buttercup and my two pet guinea pigs. I also happen to be a five-year Kidney Transplant Survivor and have recently been diagnosed with several other chronic illnesses, including POTS (Postural Orthostatic Tachycardia Syndrome) and Dysautonomia.   As little kids, my brother and I created an entire imaginary world full of pretend friends. Eventually, I became a teenager, and our tales of talking cats and underground lands were literally pushed underneath my bed.   When I was fifteen, I was diagnosed with a debilitating kidney disease called FSGS. Struggling with harsh treatments and an uncertain future, I pulled out the dusty stack of papers that described the pretend friends of my preteen years. As I fought for my life, I began reading the imaginary stories I had written as a healthy child. Before long, I started writing again, using my imagination as an escape from the daily monotony of needles, doctor’s appointments, and chemo-like medicine.

In June 2010, only one month after graduating high school, I received a kidney from my amazing cousin. Almost immediately thereafter, I began writing a fictionalized version of my real-life journey. It was incredibly boring, and I felt there was a huge piece missing. In March 2012, I finally came to my senses and realized I couldn’t tell the true story of my life without including the completely fictional stories of The Pretend Friend Association.   The ‘PFA’: Part One- Story was published on December 21, 2012. Since then, I’ve published two or three each year. As of March 2016, the first seven books are complete and available for download internationally on Amazon. By December 2017, the series will be complete with twelve books.

A kidney transplant is a wonderful treatment, but it is not a cure; therefore, I will continue to fight FSGS for the rest of my life, even while I’m in remission. I recently discovered that I have been fighting several other chronic illnesses since my diagnosis with FSGS, including POTS (Postural Orthostatic Tachycardia Syndrome), Dysautonomia, and several long-term anti-rejection medication side effects. However, I am incredibly blessed to be an author!

Follow The Pretend Friend Association on Facebook for updates and more information, including samples of the books

Here is a synopsis of the series:
“There are so many fears that come with being a chronically ill teenager. My most irrational fear was that if I died, my characters would die, too.”
As children, siblings Todd and Anna Grace Shramere created an imaginary world. Guided by nine “Rules of Imagination”, Anna Grace wrote hundreds of stories about a fantastic realm, filled with imaginary friends, secret superheroes, talking stuffed animals, flying cars, and parallel universes.
Several years later, Anna Grace is thrust into the frightening world of hospitals and infusions when she is diagnosed with a potentially life-threatening kidney disease. The sixteen-year-old copes by immersing herself in the fictional stories she wrote as a child. As her health deteriorates, Anna Grace darkens her stories by giving her disease to one of the youngest imaginary characters as well as adding villains and criminals to the once-safe imaginary city. As Anna Grace fights for her life, the fate of the inhabitants of the Underground City hangs in the balance.

The first four e-books are available to download from Amazon here:
Amazon USA
Amazon UK
Amazon Canada
Amazon Australia

Posted on 27th February 201617th November 2016 by Conscious Crafties Stories — 4 Comments

Told pain was in my mind before diagnosis

Hi, I’m Chloë and I am 18 years old.
Here’s my story..

At the age of 16, I started with agonising pain in my ear which completely stopped me in my tracks. I visited the doctors constantly to try and find the cause of my pain but they had no answers to give. Months and months past and several more doctors appointments were made but no one seemed to understand the pain I was in and because they didn’t understand, they had no idea what was wrong. At first they wanted to treat me for basic things like ear infections etc but I knew 100% that it wasn’t anything like that. The pain was unbelievable, sharp electric shocks that shot through my face and ear leaving me in utter agony. I used to tell the doctors that it felt like “the pain was in my brain.” Luckily, I have a very supportive family so they pushed and pushed at the doctors to get me referred because I couldn’t live this way.. especially with no answers.

I was referred to ENT who did hearing tests, pressure tests and other basic tests of my inner ear, middle ear etc but nothing was found. Since they didn’t find any problem, they referred me to maxioral facial who did X-rays and scans but once again, no problem showed. After this, I was sort of pushed away by the doctors because nothing was showing and in their eyes, they had tried all they could. A year and more went by and the pain calmed down. I didn’t forget about it but I put it behind me till I had finished college and got the grades I worked hard for. A couple of months after college the pain was back with a vegencance. This time the pain was 100 times worse. Like before, the pain started with electric shock like pain, suddenly starting in my ear but this time it didn’t last for seconds, it lasted for hours, even days. On the 7th of September I handed my sick note in at work as the pain stopped me being able to go. My family couldn’t stand watching me in pain and having no answers as to what was wrong, all we did was panic. After more maxioral facical visits, they decided they wanted to send me to a Neurologist. Months and months went by were no appointment came through so my family decided to pay so we could go private and get seen as quick as possible.

My Illness is Real!

An appointment came through and it was the day to see the Neurologist. The neurologist diagnosed me with Glossopharyngeal Neuralgia, wow, there was finally an answer! Glossophraygneal Neuralgia is a rare condition where I have damaged nerves in my brain stem. There can be numerous reasons for this but one of them is that blood vessels in your brain press on the nerves and eventually cause damage. The nerve that is damaged is the one that controls your swallowing and pain can be felt in your tongue, throat, ear and other parts of your face. The pain I feel is mostly in my ear but since being diagnosed, I have felt pain in other places. I have since been put on numerous medications, Carbomazapine and Gabapentin but the side effects have been awful. I’m waiting for an appointment to see the Neurosurgeon for the second time as if the medication doesn’t help the pain.. the last resort is major brain surgery. The pain I feel has since stopped me from going to work as it comes and goes and it so unpredictable. It can be set off by daily things such as eating, brushing my teeth, talking and even cold air on my face. The pain is unbearable at times and can’t be helped by medication so I often take strong Cocodamol to knock me out to sleep when it starts. The pain in my ear is electrifying and burning to the point where I can’t move or talk cause little movement knocks me to the ground. Throat and tongue pain feels like I am swallowing razor blades and sometimes it’s impossible to even swallow my own saliva and I beg for a feeding tube. I’m nearly 19 now and learning my own ways to cope with the pain. I’m still off work as they have kept my position open for me but I am hoping and praying a miracle comes my way very soon! Until that miracle comes my way, I have unconditional support from my family and my boyfriend who keep me going day after day!

Happiness Found In Crafting

My love for crafts started at a very young age whilst watching my mum make her own clothes, curtains, cushion covers and anything she could think of! Whilst being at school and college, in my spare time, rather than going out with friends, I would sit at the dining room table, fill it with my crafts and indulge myself in all the buttons and sparkly things! When I left college and got myself a part time job, my crafts were sort of put aside as the hours I did went up and I was exhausted by the time I got home! (Partly because of my illness.) As I deteriorated and the pain got worse and my sick note was handed in, crafts didn’t even enter my mind and all I did was try and sleep the pain away. I didn’t leave the house as I physically & mentally couldn’t, but at the same time I was sick of the same 4 walls. After seeing the Neurologist and Neurosurgeon and hope was given to me, I knew I needed to find something to keep me going. As I am still off work, I needed to occupy myself on the good days I had rather than staying in bed. One day, I rooted through my crafts and the happiness I found in those drawers was unbelievable! Since then, I have my own little work station set up, a Facebook page to show and advertise my things and I have even had messages about selling my things in a shop on a commission basis! How exciting! Crafting gives me a reason to get up and do something with my day rather than wasting away in bed because I’m not working. It helps to keep my mind going and plus, the money helps too! Crafting makes me happy and all I want out of my crafts is to make others happy when they buy and receive them. I craft to battle through my illness because it gives me something to aim for and a reason to believe in myself when everything in the world feels like it’s going wrong.

Visit Chloe’s Shop 🙂