Story -

My Pancreas and I

My Pancreas and I

This piece is more of a need of expression and release. I know many of you wonderful people will understand.
 

I’ve always kind of guessed what could kill me. No, it’s not something dramatic or even sudden. It’s not anything that would put me on the front of papers, or alert the police, or even any emergency services. They know, I know. They aren’t brave enough to sit me down and say this is probably your death.

Probably.

One thing in life is you can never foresee the future. Despite gut instinct, there is no path laid out for you without something or someone that might cross lanes and end yours. I envy the people who have health. Never will I get jealous over money. I envy health. The one thing in my life that is uncertain.

Ever since I was a kid, I used to get most odd feeling late in the night, like my stomach was empty. I was empty. I felt like nothing, or even, I felt death or dying. I felt like I was on the borderline of living and being non-existent. I could never wrap my finger around that feeling, not till this paragraph. I can remember the emotion so well but I never explored it, I hadn’t figured out a name for it. But I couldn’t help but feel like I was unique and the only one that could feel it. I hated it. It made me hate myself or feel sorry for myself because I knew something was wrong with me.

I didn’t discover what, until I was 14. But I still think, that feeling I used to get so often is something to do with my illness, maybe an add-on.

From when I can remember I used to get severe stomachaches. Stomachaches that made me cry all night, no drug helped me relax, not even my mother stroking my hair or tickling my arm. She couldn’t help me, nothing did. It got to the point of exhaustion of crying did I ever fall asleep.  My stomach would burn; it felt like burning throughout my chest down to my lower stomach. It was excruciating. I couldn’t breath most of the time or I panted. I couldn’t move or I moved erratically. There was no in-between. I wanted to escape my body.

My earliest memory of this was 6 years old. So of course, it’s just a little girl who has a bad tummy. The doctor would give me a lollipop and some tablets and I’d be on my way. I’d be happy. It was just a bellyache. But it happened again and again and again. I cannot count the hours my mum and dad would stay up in the night with me trying to stop me crying. I admit it only lasted a night or the occasional day. I remember one time I was with my summer school playgroup and we were about to make cupcakes. But I got hot and sweaty and my stomach felt like it exploded, but I didn’t cry. I didn’t want people to know I was ill; I so desperately wanted to make cupcakes, be normal. But I couldn’t, I just sat in a corner and hugged my tummy so tight in hope it might stop the pain, not speaking to anyone.

From then on I don’t really remember getting any more pain. It vanished, so I forgot about it. When I was 14, I was in science class and I remember sitting there working and all of sudden my head felt light, I couldn’t swallow and heat radiated off of me. That’s when my stomach began to churn and the fire spread through me. One of my classmates asked,

“Emma, are you okay?” I didn’t realise how obvious I was. I was shaking and pasty white. I ran to the toilets and looked at myself in the mirror. I looked like I was dying. My lips were white, my eyes were dark I looked horrendous. I was scared; I was in so much pain.

Eventually I was sent to hospital and at first, the doctors and nurses laughed at me asked me if I had started my period yet. I said no. They began to sign me off explaining me about the menstrual cycle. I was furious; I knew in my heart it was something else. I shouted,

“Just test me! Do your job.” I had upset the staff that day and embarrassed my parents, but I found out what curse I had been bestowed with. They took my bloods, urine samples, swab tests, anything. After a couple of hours a team came back to me and apologised for how unprofessional they had been and explained to me I had Pancreatitus.

Pancreatitus is a highly known alcoholic caused illness, which has taken many people into hospital and worst case has killed them, which usually occurs in Pancreatic cancer. It’s an extremely painful experience for a person. Being only 14 and at the most had a sip of shandy, there was no logical explanation of my series of random unprovoked attacks with this illness. They had never seen such high amylase level in a child. Usually, the pancreas should stay between the levels of 0-99. Mine was estimated over 1000. That was only a minor attack. I dread to think what a major attack felt like. I was described to having Idiopathic Pancreatitus meaning (Unknown reason for my illness.)

For years since, to the day, have my team of doctors and my surgeon who is now my friend, yet to come up with a solution as to why this happens to me. I’m now 20.

I hate my illness. Worst thing is, I don’t know anyone who understands, so I can’t talk about it. I can’t talk about the fact every time an attack comes on, I fear this might be worse than the last or how I feel like this is killing me each time it happens. Slowly chopping away at my life expectancy. It makes me sad. It makes me vulnerable. I have to be looked after when it happens. Not all my loved ones will be with me forever and I don’t know what to do.

I may come across as depressed in this text; I may even come across boring. But it’s the first time I’ve truly expressed my feelings about my burden. I’ve never had the chance to, like, moan about it. It’s very close to my heart.

I know I’m not the only one in the world with a problem. But like everyone else with one, I just ask myself, why me?

Why do I have to deal with this pain? I want to live a long healthy life. Not cut short by something I was born with, that is essential to my life. I suppose it’s ironic. How something that keeps you alive, could also kill you. I won’t let my dodgy pancreas stop me though.

It’s stressed to me that I mustn’t ever drink. But I have and I still do. I want to be as normal as possible, for however long it takes before I have to stop. Lately, I’ve been getting attacks, with periods without it shorter than the last. It’s slowly worrying me again. I know I should sort my act out, but I suppose I’m addicted to being normal and fun. I enjoy my life. I love my friends, family and my boyfriend. They will always be there for me thankfully. But it doesn’t stop me being scared of my potential painful death. I don’t feel the pain anymore. I mean, I feel it, but I’ve adapted. I can cope, just. I’m just hoping natural birth will be a breeze, that’s if I can have kids easily. I suppose I just need to live my life to best I can.

I’m starting to realise that I will never find out the reason why I have this or how to stop it. It’s practically incurable. So I have to endure it. I could not have it again for years to come. It could happen tomorrow. I can’t think about that anymore. As upset as I might be about it, I need to focus on quality of life. As worrying and stress is a known factor or provoker, if you like, to 1000’s of illnesses.

I suppose this is classed as an explanation, or even an insight to the massive chunk of my life that so few know about. Let alone know my feelings about it. In the end;

When life hands you lemons, make juice out of them. It’s easier to digest.

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author
Random Enigma

I find you neither boring or depressing.  This is a factual account of a very unfortunate medical affliction.  You have every right in the world to express what it is, how it feels, your fears regarding it.  Although you feel alone through all of it, your expression of your life connects you to a whole world full of people who understand pain and fear.  Perhaps this sounds cold, but I do not pity you.  I applaud you.  To go through something so painful and scary and to continue to really live your life is a difficult choice, not in the making but in the doing.  I wish i could ease your pain but I recognize you as being a superior being for the grit and determination you've had to make it to this point.  You may feel isolated but you are not alone.

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author
Emma Theedom

I think after all the sympathy and apologies I've had over so many years. I honestly realise now, all I've wanted to hear was, that someone donesnt pity me. I don't want to be pitied now. I've been and done that. I now know the line between comfort and sympathy. Thank you so much, I was very tied on posting this as I have truly never spoken of my true feelings about this apart from to my mum when I was at my all time low during an attack. The choice I chose health wise is not the smartest I know or the easiest. But I've had fun doing it. People like you make this site my saviour. Random Enigma, thank you. You've imprinted something lovely on me, you've encouraged me which I never usually experience. I wish you happiness and health.

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author
Random Enigma

I'm glad to have read your story and connected with you!  I wish you well, as well, and I hope that you'll have an awesome day!

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author
Valerie Lynn

Hi sweetie :)  I just wanted to say I read your story and I sincerely hope you do not feel alone. No we do not have the same illness but I can relate to you more than you know. If you ever have time to read it, I also wrote a story on my poetry page about the eight illnesses I live with on a daily basis (two of them are potentially fatal at anytime). It is called Lyme Disease is Killing Me. I know how it is to have your life completely turned upside down due to an illness. I know how when people look at you they don't know how much you are suffering inside. It can really get to you. You are a wonderful writer so keep your head up. I am always here if you want to send me a message to talk or vent about anything. 
Val ♥

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author
Emma Theedom

Thanks Valerie, I did read your story and I commented my feelings on it.

Like you, I have my family and my lover still holding my hand through it all and my friends who have stuck by me. (Finally realised who my true friends are through this.) Which is heart warming. I've become quite shy because of this, because my stomach is constantly swollen and its uncomfortable, almost like being bloated all the time. But my boyfriend doesn't care, he loves me as I am. But I got some good/okayish news on friday. They found I have pancreatic stones in my duct, 3 or more, all about 4mm wide, half a centimetre (impressive right?) which they plan to blast, so it would be easier to pass. I find this strange as I had my gull bladder removed at 16 due to stones, so I'm hoping maybe I'm just prone to stones? But still there are many unanswered questions, related to my childhood, but it's becoming more easier to understand.

I'll look out for updates from you. I'd love to hear how you get on. Remember the pain is only temporary. There is so much to look forward too. And thank you for the lovely words :)

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author
Valerie Lynn

I am so happy to hear you got some good news and I pray that the doctors will be able to help you with your condition so you will not be in so much pain. I am also so very happy to hear you still have your family and your boyfriend by your side. It takes a very strong man to be able to stay with someone they are dating or married to knowing that they are suffering and there is nothing they can do to help take the pain away or make everything go away. I'm not sure if that made much sense...I'm just saying you are lucky to have so much support. To me that can make all the difference. You can message me anytime you want. It seems we do have a lot in common. You will be in my prayers! Stay strong :)

Val <3

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author
Jimmy Arnold

Emma, you are a very brave and admirable young lady, with your whole life ahead of you, continue focusing on all the good you have done and yet, still to do, in your life and those whom love and care for you, will always be there for you and those that have selected their own path away from your loyal presence, (due to shear ignorance),were not deserving of your sincere heart and love from the start and their lost, (is all others whom favor and accept, your heart of gold), is forever to be, and shall stay,a sincere and cherished package of God given gain, to always marvel over and to forever be maintained...You have more courage and care for yourself and others, in your little finger, than they could ever muster are boast exist, in their entire body or self worth...Keep your head high young lady, for you have no reason, to allow it to to be held in any other manner...I took my wife to one of her doctors appointments the other day, for her bout of depression and had the opportunity to read up on your condition, from one of the magazines that had been placed on the lounge table and it made me respect you even more than i had from the start, for the fight you so courageously fight on a daily basis and i commend you for being able to stand up to the occasion and speak on and against it's existence....You are a strong young lady and each time you speak of this condition, it educates those, that are not familiar, with what you have been faced with rather than  them remain dumbfounded and present their own assumptions...Always a prayer in heart for you..

Kindest regards always,

Jim      

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