Wednesday, December 3, 2014

A personal perspective on living with Crohn's disease, cystic fibrosis and cancer by Derrick LoRusso

Before I begin I'd like to thank Mrs. Turley for letting me write on her blog. So if traffic suddenly stops coming to her blog after you read this she knows who to go after. Thankfully, I live in Canada (Or as you Brits call it “Across the pond"), so she's got a long swim to get me. Not including the rabid polar bears and the bone chilling cold. 

I was diagnosed with cystic fibrosis when I was six and Crohn's disease at eight. (Or as I call it "The Ultimate Weight Loss Program.") Ever since then it has, quite literally, been a roller coaster ride on the “Tilt-a-Hurl 2000.” Every day I question if I'm going to breathe easy or I worry about coughing up phlegm. A lot of people have shot me dirty looks because of coughing fits that randomly pop up. My stomach will get into knots of pain at random, causing me to be, literally, out for the count all day. About a year ago, I was also diagnosed with a tumour on my pancreas. Cancer does run in the family, but I thought life would spare me the grief of cancer. The tumour was found by a complete accident during a CT scan - at least I got something out of being in a cramped coffin while horrible disco music blasted in my ears. As the great doctors laid me down on the table, I told them, “Be gentle. This is my first time.” (Humour has been the one thing to keep whatever sanity I have left.) 

Now at the time of writing this, I have what is called a PICC line in my arm for almost three months now (Don't Google it, you won't eat proper for a week). Basically it's a large IV put into a vein in my arm, followed by a tube running through the vein to my heart. Great conversation starter let me tell you! It's in me thanks to three viruses growing in my lungs. One of them was *supposed* to have died off in 2008 but now, recently rediscovered, has returned like a villain from a Batman movie. My poor doctor (who has been in the field for 20+ years) is trying to figure out how to cure it without upsetting an even more deadly, harder to “treat” virus. Apparently, shoving a Dyson vac down my throat and vacuuming up all the phlegm within me might help. Beats having to shove down a dust buster that's for sure.

My parents and I donate whenever we can to charities supporting a cure. I didn't think they would ever find a stem cell for lungs! And they did. Science is breaking boundaries on curing not only cystic fibrosis, but also other chronic diseases of the lungs. There are hundreds of people out there with CF, and they all suffer differently. Some are in the hospital daily, unable to even breathe without constant medical assistance. But it's not just lungs; it's pancreas, bone density, even fertility. We suffer until the day we pass - or until a cure is found. 

Some sufferers are, like me, diagnosed with what the medical community refer as “mild cases of CF.” Able to go outside, go to work, eat and sleep within their own place. We can try to live a normal life. Even if every day does feel like we're drowning, or worse, suffocating without any real way to stop it. I used to keep quiet on my illnesses - a constant fear people won't understand that I am unable to do many things. That fear of “I'll look weak,” or, “I'm not worthy of their time.” Some people are too busy to understand or just don't bother. They see someone like me and think I can work just fine. In reality, I can't walk up the stairs today without feeling like I just ran fifty miles. Recently I've been more vocal about the issue - letting people know about what happens to us both mentally and physically.   

Which is why people like Linda Huber, the Write Romantics and the book Winter Tales are important to the cause of finding a cure. Yes, they are just a small piece of the aid, but big things come in little packages. I won't see a cure for cystic fibrosis in my lifetime, but maybe with help from people like you, we can kick it's ass and get people affected by it to know what it's like to breathe normally, live normally. Until then, I'll continue to take several hundred pills and vitamins, fifty shades of puffers and inhaled medicine, and countless hours of waiting at the hospital, hooked into an IV, and confusing doctors from here to Timbuktu. But I wouldn't give up my illnesses even for a million dollars. It's a part of what made me who I am today. And normal, is not in my vocabulary.

Many thanks to Mrs. Turley, my dear friends and doctors for their constant good will and generosity. And many thanks to my parents who everyday sacrifice their happiness to help and support me through all of my pain. They're part of the reason I'm still here today. Keep smiling everyone!


 Derrick LoRusso

Currently just £0.97 on kindle in the UK and £5.41 in paperback.

For more on this subject please check out below links to two previous posts. And please check out Winter Tales on Amazon - even if it is not for you, please pass on the link to someone who may be interested. There are a lot of romanctic fiction lovers out there - let's find them!

 Linda Huber, author of The Paradise Trees and The Cold, Cold Sea, on why she contributed to Winter Tales.

My post on why I am supporting Linda and The Write Romantics  


I will be returning with my usual brand of silliness and an update on my self-publishing journey in the very near future.

5 comments:

  1. Hi Derrick, I'm one of the Write Romantics (the first story in the anthology) and I found your blog fascinating. This is why we wanted to write a charity anthology and why we specifically wanted to support those two charities. I really hope a cure can be found and wish it could be within your lifetime to ease your suffering. Thank you for sharing your story and I wish you comfort.
    Jessica x

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  2. Derrick, your humour shines through in the post, despite the incredibly difficult circumstances your health issues have created. Like Jessica, I am one of the Write Romantics and it means so much to us all that you believe that what we are doing can help make a difference, however tiny a part of the picture that is. Anyone reading your post cannot fail to get a sense of the reality of day to day life with CF, because you write so eloquently and yet with a trace of self pity. Indeed, you are what us Brits call a 'top bloke'. Jo x

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    1. Hello Jo Bartlett, I cannot say thank you enough for the kind words. I have to stop from tearing up to be honest. Humour means a lot to me, and as long as one person laughs I can honestly say I'm happy. Thank you and the rest of the Write Romantics for your tireless work as well. I cannot say enough gratitude what you are doing. Do not worry, my long fingers seem to almost fail me daily as well!

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  3. Without a trace of self pity is, of course, what I meant to write – sadly my fingers don’t always do what my brain wants them to!

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  4. Derrick what a brilliant post, you convey a lot of what your conditions are like without being grumbling about them. I have a weird condition too and people often say I must wish I could be cured but I say no, that's the way I am and I must be like that for a purpose so c'est l vie! I'm a write romantic too and love the ingenuity of raising money for charity. Lynne x

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