Hello Disease on my Sleeve followers!
Here at Disease on my Sleeve, we are in the midst of producing and creating some incredible and exciting new things that we look forward to sharing with you all in the New Year.
Until then, our commitment towards creating Disease on my Sleeve to be an even awesome-er place than it already is means we have to take a short break in posting for a few weeks.
We hope you understand that this development process means bigger and better things in 2014.
We thank you for your patience and until next time we wish you the best this Christmas season.
Katie, Sami and Jaden.
~Disease on my Sleeve editors.
I breathe in every detail. Nurses holding him down. That little boy lying there; I never knew it could actually hurt to love someone so much. The nurses wear protective gear head to toe. To shield them from the chemicals about to enter that little boys veins. Chemicals that could strip paint. He lays there, no defense what so ever. We lock eyes, and I see fear. I see his pleads for me to rescue him. I want him to know that it is my instinct to push those nurses away, and grab him and run. Run to a place where nobody can poison him anymore.
But I don’t. I sit there and each time that needle goes in, I die a little more inside. I sit wishing he will understand that all I want to do is save him, and by letting the torture happen, I am saving him. I hope…
The chemicals take over and that innocent little boy lies there whimpering. He doesn’t fuss. His acceptance of what he’s going through hurts more. He doesn’t complain or ask why him; he just gets on with it. He lies there, he whispers to me in that irresistible little voice, “It’s owchy here, can you please ask it to stop just for a little bit.” I can’t help but wonder how many times he will continue to trust me to make decisions. How many times can I promise that he will get better? How much longer will believe me? How much longer can I deal with telling him it will all be okay in the end? That it will be worth it, when I have never been so unsure of something in my life.
Yet I promise it. Recite it. Repeat it. And every time he drifts into that chemical induced haze, not asleep. But not awake. All I feel is guilt. And all I can do is ask why. Why him.
Nobody ever believes it could happen to their child, the happy healthy kid they babysit, their angel. But when it hits someone close to you, your whole world comes crashing down, that kid is always on your mind. Every time you say goodbye to them, you are left wondering if it will be the last. Everything reminds you of them, and their family suffering just as much as the child.
After being a huge part of a little boy’s fight with Neuroblastoma, the most common childhood cancer at infancy, with mortality increasing as age increases, I was so touched by the fight all the kids put up on the cancer ward. They battle more than most do in a lifetime in just a few years and still smile through it. They are the real life heroes, along with their families, and that’s what motivated me to start fundraising.
For my 18th birthday, after being asked numerous times what I wanted for my Birthday - and realizing there was nothing that I needed and the only thing that mattered to me then was that little boys life - I asked for donations instead of gifts that I would donate to research for childhood cancer. When I told my family of my decision, they wanted to turn it into something more. We organized raffles and games to raise funds and ended up raising over $1500 on the day. The generosity of my friends and seeing how much people are willing to help out made me want to continue my efforts. I have done more fundraising since including making and selling bracelets. I was asked to be an ambassador for the Telethon Adventurers, and I plan to raise awareness and funds until we find a cure.
Hey everyone, I’m Andre and I’m 21 now, but my journey with cancer first started when I was 6 years old in 1998. I had the chicken pox at the time, but I was getting far sicker than I should be for having just that. My parents brought me to the doctor, who ordered an ultrasound after feeling what seemed to be an enlarged spleen. The scan, however, revealed something far more than that. It revealed that I had stage two Neuroblastoma, which is a solid tumor cancer. I went through chemotherapy for this and also had an abdominal surgery to remove the tumor, which had formed on the adrenal gland. Unfortunately, I relapsed in the year 2000, but stage four this time. I had to go through chemotherapy again, another tumor removal, and also an Autologous Stem Cell Transplant. Following this, I eventually would get better and even go on a wish trip to Disney World in Florida; though there certainly was a long period of getting pneumonia infections, among other things.
These eight years went by fairly normally for me, aside from the motor skills issues, memory problems, and other things that were direct results of the treatment. All as going pretty well until 2008.
One day when I was having pre jaw surgery blood work done, the doctor called me back to inform us of what he saw in my blood. Leukaemia. Treatment-wise this time, I went through chemotherapy again, but then had total body radiation and an allogeneic bone marrow transplant afterwards. The transplant itself was pretty straightforward and like a transfusion. Usually the marrow only tries to reject the body for a short period afterwards, which seemed the case with me at first, but later down the road, my new marrow started rejecting more severely. It made me very sick as it attacked multiple organs, including my lungs, causing me to need a double lung transplant.
I received the lung transplant a bit over two years ago now. I have started volunteering at a summer camp for children with and affected by cancer. I am in school in community services and child studies, learning about the child and youth work, social service work, early childhood education, and developmental service work fields. As well as being in school currently, I also have done some work with the Pediatric Oncology Group of Ontario.
I want to talk to you today about a disease called Glycogen Storage Disease. This condition has eleven types, and every one in one hundred thousand children is affected with one of these eleven types. How do I know this?
I’m not a doctor or a scientist. I don’t work in the medical field, I’m not a social worker and I’m not a researcher. I am one in one hundred thousand.
I was diagnosed with this rare condition when I was 4 months old, with the subtype 1A. This condition means I was born without the liver enzyme needed to turn glycogen (stored sugar) into glucose (useable sugar). Since I am unable to convert the stored sugar into the sugars my body needs, when I go without food for an extended period of time (averaging about three to four hours), I will go hypoglycemic. My blood sugar will drop, and that can result in a seizure, a coma or even death. The condition is rare, it is life threatening, and it is a daily struggle.
For sixteen years, I’ve lived my life by the clock. Every few hours, I drink a special cocktail of cornstarch and water. During the night, I am hooked up to a machine that pumps life-saving nutrition into my body via a tube in my stomach. It’s less than attractive, but it saves my life, and therefore it is beautiful.
So many times, I’ve faced death. I’ve looked him right in the eye and not cringed. When he came for me, I ran the other way. So far, he hasn’t caught me. Every night, I go to bed with the knowledge that I might not wake up the next morning. Even a simple stomach flu lands me in the hospital, fighting for my life. I am more susceptible to infections, and I’m on a strict diet of very limited amounts of sugars, fruits, and dairy. My life hangs in a delicate balance, and I am constantly being monitored, as the smallest change could be the difference between life and death.
I am no longer afraid of dying. Now death is like an old, unwelcome friend. He comes to visit every once in a while, slowing down his carriage, coming almost to a complete stop, waiting for me to enter. So far, I haven’t. Sometimes, he takes those I love. I’ve defied the odds so many times. They were prepared that I would never eat. I’ve been eating for the past four years and have become quite the foodie. After a night when I didn’t wake up the next morning, doctors told my parents I wouldn’t wake up. Three days later, I opened my eyes and asked for my mom. But still there are so many unanswered questions, so many unknowns. What about when I start dating? What about when I move out on my own? What happens if I miss one of those crucial cornstarch doses or skip lunch or my pump stops during the middle of the night? What if I get sick and can’t get to the hospital? What if…
I’m not the exception. I’m not the only one out there like this, fighting for my life, fighting for more time, fighting for a chance to be normal. I’m just one in one hundred thousand. And there are others just like me just fighting for a chance to live. We are the exceptions to the rules, and we are exceeding limitations all the time. With the help of an amazing team of doctors dedicated to finding a cure for this awful disease, we are thriving and striving for a future where no other parent or patient has to live chained to a clock, where every second counts, where life hangs in the balance. Thanks to one man who has spent his life trying to cure this illness, and making sure the patients who live with it thrive and grow, people like me are becoming doctors and mothers and football players and architects.
So I am one in one hundred thousand. I am living my life by the clock and hanging in that balance and fighting for all my moments. But I’m also Alisha. I’m sixteen, and I’m a writer. I love my friends, love my family, love art and food and animals and life.
Someday, with your help, we are going to find a cure for this awful disease. And, someday, I am going to change the world.
If you would like to know more about this condition, the types, and the lives it affects, please check out www.agsdus.org. Together, we can find a cure, and continue defying limits.
It’s 6am. I lie, bound by tubes and wires, baring any chance of a comfortable sleep. I’ve had to give up on luxuries such as resting my arm under my pillow or lying half on my stomach with my arm propped up as I usually do. Even lying on my left side creates a pulling sensation on my stomach from my drains. Instead, I lie on my back, with my arms awkwardly stretched out, facing upwards, not to put pressure on my IV’s. My brother left last night. I don’t remember him leaving though. He stayed sitting by my bedside until I fell asleep. I asked him to read some of the little Winnie the Pooh book to me. I know I’m too old for Winnie the Pooh, but I brought the book over to Melbourne with me just because I love it so much. The enchanting short stories always put a smile on my face. I predicted I would probably need that. I planned on reading the book myself, but when I opened it, I simply looked at the words on the page and they melted into a blur. I didn’t realise how much morphine I was on. I have my own special morphine button. Anytime I’m in pain, I just press the button. I hardly do, though, only before I get up to go to the toilet or for a walk. As the nurses help me up, they always say, “Want to press your button before we go?” It doesn’t seem to make much difference to me though. I still have excruciating back pain. I now know lying on a metal slab for 9 hours is not good for your spine.
One of the nurses enters the room and walks over to the windows. They pull on the dull green blinds to allow the morning light to flood the room. I look out to the light blue morning skies and see the wind blowing through the tall trees. This is what I miss so much. I have been trapped in this hospital, in this ward, on the 7th floor, for 5 days now. For 5 days, I have not felt the wind on my face, the heat of the sun, the chill of the morning. The sterilized white walls of the hospital keep all of nature out.
The baby opposite me starts to cry and wakes up his mother, sleeping on the fold out bed next to him. Her un-dying strength permeates every movement she makes, every word she speaks. She wearily pulls back her blanket and immediately leans over her child’s plastic cot, forces a smile and shh’s and strokes her child’s forehead. Parents of sick children are the strongest people I have ever met. They are not necessarily strong to begin with, but they are pushed so far to the edge that they have to become strong to hold on. They are so desperate, so helpless. Yet they keep fighting, staying by their baby’s side every night, too scared to leave. All they have left is hope… She smiles, enjoying the moment of normality as she cradles her baby and gently swings him back and forth. Lights flash. Sirens go off. Her smile changes as rapidly as it began. Time freezes for a moment when I see her face. Pure fear. She holds her baby away from her like some kind of curse, waiting for the nurses to relieve her. It doesn’t take long. Within 15 seconds, about seven doctors and nurses have swarmed into the room, surrounding the baby in its little plastic cot. The mother stands in shock, hands over her mouth. Tears well up in fear of the unthinkable. Her legs are frozen, but it seems like any second they will give way. As she watches, I know she would give anything to swap places with her darling boy. As the scene unfolds before me, it breaks my already damaged heart. However, as time slowly passes, the nurses become less frantic, the lights stop, and the beeping returns to its usual steady pounding of the heart monitor. A slight hiccup in the boy’s short existence, nevertheless enough to show me just how contagious a heart condition can be. His faulty heart is like a virus, infecting the ones closest to him.
My thoughts are interrupted as I see mum entering my view. “Morning,” she says wearily, “I just took Jaeger to the airport.” She collapses into the chair next to me, takes a deep breath and asks, “How are you feeling?” “Tired. But I’m alright,” I reply. She stares at me, analysing every detail on my face, trying to figure out if I’m telling the truth, almost as if searching hard enough will make it true. My mum may not be as new to this as the parent opposite me, but I can still see the same anxiety-driven strength in her eyes. I have seen the horrors that parents like mine go through. The uncertainty, the waiting, the fear. I wish that I could have swapped places with my mum all those years ago. To relinquish her of the burden of loving something so damaged. But then again, it’s impossible to tell which situation is worse, enduring the pain or watching it. Nevertheless, from the day I was born, I was given this mind and a broken heart, and all I can do is live with it. I think that’s the scariest thing about life. It doesn’t take requests. You take what you get. But the scars that you accumulate over the years are what make you who you are.
I don’t know if it’s just my life, but it seems to be that as soon as everything starts to get back on track, everything comes crashing back down again.
Before I tell you a little about me, I’m going to tell you a little about my family.
I’m going to start with my dad (my rock). He has Myeloma, a bone marrow cancer. Last October, my dad has a stem cell transplant. I don’t know much about it because I don’t want to upset myself by knowing all the details, but I do know it’s a painful and long process. He had to have a harsh course of chemotherapy to completely wipe out his immune system and then the transplant. This kept him in hospital for six weeks, and as my mum and dad are very close, my mum spent as many hours of the day as she could with him. I didn’t see my mum for more than an hour a day because she would leave the house at 7am, dropping me off at school on her way, and wouldn’t be home until at least 11 at night. This was a difficult time for me and my dad, as I only went to see him in hospital twice: once on Father’s Day and then a week later. It wasn’t easy seeing him looking so ill. He has always been my rock, and now it was looking as if this was the end of it all.
My mum has been in a wheelchair since I was about five, so to be truly honest, I can’t ever remember her being a “normal mum.” When I say that I have never had a “normal mum,” I mean that me and my mum never have had the chance to do stuff that my friends do with their mums. I only noticed how different our relationship was a few years ago when one of my friends was talking about what she had been arguing with her mum about, and it was things like doing the washing and staying out late. You might be wondering why this made me notice how different our relationship was; well, let me tell you. It’s because me and my mum argue over things like how she needs to go and see her doctor, or how much rest she needs. We don’t ever argue over washing or me staying out late because little household tasks like washing up, cleaning, and doing the vacuuming are just stuff I have always done!
Then there’s me, the youngest of 4, the only girl. I was diagnosed with Crohn’s Disease on November 15th, 2012. Yes, that was only 6 months ago, but I feel as if I have already come to face the facts, and I am very open about my disease and how it affects my life (well, that’s if people want to know; let’s be honest, most people don’t want to hear about poop, pain, and blood tests, now do they!). I have a passion for acting, and I refuse to let my short-notice pooping stop me from following my dream! I am starting a musical theatre course in September and hope to one day become part of a holiday entertainment team.
So, my long story short, in October, my dad looked as though he had days to live. As soon as he recovered and got into full remission, I got so sick that I looked more like a twig than a person. By March, I was a lot better and had good control over my disease. But, now my mum’s back is causing her so much pain, she can hardly move! So what I want to say is that “Life is what happens when you are busy making other plans.”
I hope my story has inspired you to keep fighting like a lot of stories on this page have inspired me to fight on through.
My youtube channel is SteffenieJ.
Hi, I’m Liz. We take a look often at what people are dealing with medically, but sometimes we don’t realize what people might deal with mentally, which might also be just as painful to deal with. To me, the things I deal with medically are nothing compared to the mental agony I have dealt with for the past three years.
To save the pain of explaining everything, I will only briefly touch on what I deal with. It all started back in July 2010 when my cousin got sick. That’s what triggered everything: my thoughts, emotions, and memories. After he died in January 2011, my mental health took a downward spiral. My parents were unsupportive in helping me get through my cousin’s death. Since his health has always been an issue, they somewhat detached themselves from him. I loved my cousin to death though. In my mind, death was honestly never a possibility for him. We found out about two years after he died that he did not die from complications after a surgery due to his weakened state from Cerebral Palsy, but that he didn’t have CP at all; he had this very, very rare genetic disease called Allan Herndon Dudley Syndrome. It’s a rare degenerative genetic disease passing from mothers to sons that primarily only affects males. It looks just like CP in almost every way and is very, very, very debilitating.
Anyway, I have always struggled with trust issue,s but after his death I struggled with it a lot more because I had absolutely no one to turn to. I only had myself. My mental health spiraled so much that I turned to self-harm almost daily for probably close to a year or longer. Eventually that didn’t help anymore; then, I tried to take my own life, not once, twice, but three times. None of the times were serious compared to what you might think, but to me, it was a suicide attempt. I was trying to kill myself. I reached the end of my rope with no ways to cope anymore. I was self-harming daily and crying literally every night.
I started to see a counselor by my own will, without my parents’ knowledge, mid-2011. After finding a counselor I liked, it was a slow process to make improvements. This counselor was just the person I needed. She made me feel loved and acknowledged. Her and I didn’t even always talk about what I was going through — sometimes, we would just talk about “whatever…” such as her young son, animals, school or work, things that irritate or excite us, etc. I loved her so much. With her help, we uncovered more reasons underlying why I was having a terrible time with my mental health, apart from my cousin’s death. Basically, my cousin’s death was just a “trigger” and caused everything to spiral, even though there was a lot going on beforehand… such as bullying, low self-esteem, lack of coping-mechanisms, and lack of ability to verbally express myself.
Now, after taking what that counselor said, my new counselor is teaching me now (after my old one moved). I am achieving leaps and bounds in my recovery. Mental health is something that is too silent. It makes people who struggle feel alone, unloved, and unworthy. That’s very much how I felt. But in all honesty, in the deepest of our disparity, we aren’t alone. Even if we are curled up in a ball on the floor bawling our eyes out, we aren’t alone. In those moments, we are often not thinking straight, and it takes getting out of those moments to help us see the light again.
I hope that each of you don’t have to struggle the way I did and still do from time to time. I hope all of you realize that you are loved, appreciated, and valued. You are WORTHY of life. You are WORTHY of living. You are WORTHY of happiness. You ARE loved.
I’ll end with this quote from A. A. Milne (Christopher Robin, Winnie the Pooh), “You are STRONGER than you seem, BRAVER than you believe, and SMARTER than you think you are.”
This year is the beginning of a brand new adventure for me - university. Although quite overwhelming and proving to be quite stressful, it’s something I am really enjoying. I am having an absolute blast. I’ve been in university for about three weeks. Every week, I continue to hear this quote that, until now, I really hadn’t had any knowledge of:
"Life is what happens to you while you’re busy making other plans." - John Lennon
When I first heard one of my lecturers announce this, the words rang too true, especially for someone living with a chronic illness. Even those without a chronic illness never truly know what is going to happen. A change can affect our life in a tragic way, or can be the most beautiful change we go through.
It’s just the thought that, while you are busy making your own plans, “life” can come through and change your life for the absolute best. You could be walking down the street when you find a lotto ticket, and it happens to be the winning numbers. Okay, that is totally cliché, but I’m sure you can see where I’m going here. You could be on the transplant list and you’re making plans for the next few months that you’re going to be cooped up in hospital, planning visitors and treatments. 3am comes around, and the nurses are getting you ready for the surgery because a donor organ has been donated. Your mummy cries and your daddy pats you on the hand as you get pushed into theatre.
Sometimes, life has these plans. I know that we don’t always agree with them, but we can’t stop them. We can’t change them. But I think it’s important to look at the beautiful things life does throw our way. The spontaneity of it all. The thought that tomorrow, our lives could change. Maybe a publisher could find our writing on the Internet and want to work with us. Maybe, while we’re singing to our favourite song, unbeknownst to us, a music producer is looking for a new sound - you.
I was only ever “just a Heart kid,” until one day when I saw a newsletter advertising a teen camp. Then, I wasn’t “just a heart kid” anymore; I was no longer alone. I had people. I’d never really gone anywhere with my illness in terms of spreading awareness then, but now, I’m writing for a website (this one!) to which I’m an ambassador for.
I think what John Lennon is saying is that, sometimes, we have our whole lives planned ahead of us, but we need to make room for the unexpected. Life is spontaneous, and instead of disregarding that or being scared of it, we need to embrace it.
So, just remember that life gets in the way sometimes. Life with a chronic illness comes with some extra hurdles. Hospitals when you least expect it. Doctors telling you news that you might not want to hear. No matter what, I think it’s important to embrace whatever comes your way, because things never go exactly as planned.
It’s hard to imagine as a parent that your child isn’t healthy, that maybe you won’t be able to take them home straight away, that he won’t walk, she won’t talk, even won’t live a full life. It’s hard to expect parents to understand that their son or daughter isn’t as healthy as one should be. I mean, could you blame them?
When I was born, I was sick. Underweight, low blood sugars, and even though we didn’t know it, yet my bones were unusual. By the time I started crawling, we knew that something else was going on. I couldn’t crawl normally, and my left arm was facing backwards. Physio, lots of physio. Occupational Therapy. Appointments. By 3 weeks old, I was a regular patient in the hospital.
Before we go any further, I think I should tell you what chronic conditions I suffer from. Here’s the list:
Fibromyalgia, Rheumatoid Osteo Inflammatory Arthritis, Bone and Cartilage Dysplasia, Asthma, ENT problems, Chronic Fatigue Syndrome, Chronic Pain Syndrome, Osteoporosis, Severe Reflux, Radiululna Synostosis, Migraines, Major Depressive Disorder, General Anxiety Disorder, Borderline Personality Disorder, EDNOS, ?Lupus, Supraventricular Tachycardia, ?Mitral Valve Prolapse, Alopecia, Anemia, Severe Allergies, Prone to Pluracy.
By the time I was 12, I had had 14 operations. I am now 20, and I have had 24 operations and am expecting more. I have had too many admissions into hospital, over 200 x-rays, over 50 ultrasounds, 6 MRIs, 7 bone scans, 1 bone densitometry, 3 CTs - the list goes on.
When I was 16, my body broke down. I couldn’t walk, couldn’t feed myself, dress myself, brush my teeth, brush my hair, wash myself. I collapsed as I tried to stand. It was by far one of the worst experiences of my life. I depended on nurses and my mum to help me. What’s worse than losing your ability to walk? Losing your independence. This happened a couple of times. The worst was when I was 18; I was in a wheelchair for 8-10 months.
Without Livewire and the support group I have found through the hospitals I have been in, I wouldn’t be where I am today. They have changed my life in so many ways, and I love them.
I wouldn’t change having chronic illnesses for anything; it’s made me stronger and a better person. It’s made me who I am today; so thank you, body, thank you to the people I have met, thank you to my doctors, and thank you to my family and everyone else who has supported me through this unexpected, unfinished journey.