A Cyclical Life

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Ryan Randazzo

In many ways life can be boiled down to finite series of cycles. Whether it’s drawn-out like how long the earth takes to revolve around the sun or something shorter such as how many days until you need to do laundry again, there are always positives and negatives to every cycle. For people with chronic illnesses, beginning to think in cycles can be a useful, though unfortunate, way of dealing with what you are going through. If you are doing well and in the healthy part of your cycle, you may forget that you are in one at all, but with chronic illnesses reality always sets in at some point. 

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The trick is to remind yourself that things will get better when you are sick, and truly appreciate the life you live when you are healthy. That may sound simple, but those who go through these cycles at a rapid pace know it is one of the hardest things about life.

This is an issue I have struggled with personally for the past two years. While I was diagnosed with cystic fibrosis at four years old, the ups and downs were so far apart that having a chronic illness was not something I thought about much. I would get sick often as a child, but not seriously ill like my siblings (they also have CF) who were on IV medications every other month. Historically my lungs have always been very strong. I began getting bouts of acute pancreatitis in early high school, and while they were terrible, they usually came 6-8 months apart. This gave me plenty of time to live a relatively healthy lifestyle and push all those thoughts about dying young and being the “sick kid” into the back of my brain. While I was constantly taking care of myself to ensure I wouldn’t get a lung infection or another bout of pancreatitis, I was living a relatively normal lifestyle.

Just over two years ago I was admitted into the hospital for another bout of acute pancreatitis, or so I thought. Normally when I would get pancreatitis I would choose to avoid the hospital and treat myself at home by going on an all liquid diet for a week or two, and things would usually resolve. However, after two weeks of not eating and the pain still being unbearable, I felt it was time to get checked out. The doctors monitored me for a week, kept me hydrated, and did exactly what I was doing when I was at home, except now I had the pleasure of being woken up every two hours to get my blood pressure checked. After a week in the hospital and minimal improvements they sent me home with a big bottle of pain meds and told me I should start feeling better soon. Since I am writing this blog you can probably guess that I did not start to feel better, and over the next six months I underwent every test in the book to figure out I no longer had to worry about getting another bout of acute pancreatitis because my body decided to escalate it to the next level; chronic pancreatitis.

Having chronic pancreatitis means all the awful things I used to go through a couple times a year (nausea, poor appetite, vomiting, sharp abdominal pain, etc.) are now a part of my everyday life, and will be forever. The adjustment period was difficult, and while I still don’t fully have a grasp on the disease, I have been able to retrieve some control of my life back by realizing the patterns and cycles of this new illness. The average cycle I go through is about a month and includes a period of being healthy (as healthy as I can be since the pain never truly goes away) for a week or two, leading to a decline, followed by a flare up (when the pain is at its worst and I cut out all food), then I go back on an upswing period once I get through the darkness. The circle of life.

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For a while I tried to trick myself into thinking that the cycle would break for good once I was healthy again, but this would always lead to me being even more depressed when I would enter the flare up stage. Once I admitted to myself that these cycles were my new reality, it gave me an opportunity to take control over them in any way I could. While I may not be able to ever rid myself of chronic pancreatitis, there are plenty of things I do to ensure that the flare ups are not as bad/long as they once were. I began to work out every day, even if that meant just sitting on a bike for a half hour, eating even less than before (which I didn’t think was possible), and over-hydrating myself. Since I started doing these things, along with taking my meds and vitamins, I have been healthier overall, and my flare ups have been much less intense.

While having cystic fibrosis and chronic pancreatitis is not my ideal lifestyle, they have given me a unique perspective on appreciating life that most people do not possess. Because I am constantly seeing such highs and lows, when things are going well I am able to appreciate it more than ever before. This past summer is a prime example of this. I had plans to travel cross-country from New York to Arizona with my girlfriend and her parents on a trip that would take up most of the month of August. 

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However, a couple weeks before the trip I had one of the worst pancreatic flare ups in years. I was unable to get out of bed for nearly a week, and I was beginning to think that driving cross country to the southwest in the hottest month of the year might not be the best idea. Once I started feeling a bit better I decided there was no way I was missing the trip, and focused all of my energy on getting in shape and as healthy as I could for the next month.

While I was not feeling 100% for many parts of the trip, I was healthier during those three weeks than I had been in a long time and I viewed every day as gift. We went to the Grand Canyon, hiked in Sedona, spent a few days on the beach in Mexico, and went on countless wonderful adventures. There was always the lingering fear that at any point during the trip my body would turn on me and I would begin to enter flare up mode, which only fueled my gratitude for each day I was healthy and able to enjoy the trip. I feel I was able to appreciate that month more than any other month of my life because of how grateful I was that getting a flare up did not ruin the trip for me. While there is darkness to having such a vile disease, there is always some form of light and for me that has come in appreciating every healthy moment I have. It inspires me to take my health more seriously as well as not get too down on myself when I am in the midst of a flare up because I know it is temporary and I will eventually get to do the things I love when it is all over. For a while viewing my life as a series of cycles of this nature really brought me down, but now I realize that sometimes you can only control your attitude in a situation and there is always a bright side in life.

 

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Ryan Randazzo is a 25-year-old living with cystic fibrosis and chronic pancreatitis. He feels most natural when he is going on a hike, but when he can’t be outside he loves to read, write, and play music. He currently lives with his incredible girlfriend in Buffalo, NY.

 

 

 

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***Views expressed in the CFLF Blog are those of the bloggers themselves and not necessarily of the Cystic Fibrosis Lifestyle Foundation*** 

***Please speak with your physician before making any changes to your CF management***

 

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