Hello, friends. Today we welcome a new regular contributor, Amy F., who will be sharing her tumultuous experience with a serious chronic illness. She has endured much and learned a lot, so we are grateful that she is bravely sharing her journey with us.
Hi, I’m Amy F. and I hate my guts. No you did not happen to accidentally click through to a self-help website dealing with personality issues – I REALLY and LITERALLY hate my guts.
It started when I was 21 and was diagnosed with my first in a string of stomach ulcers. Joke’s on me – congratulations, you’re finally of legal drinking age and the doctors cut you off of alcohol – enjoy! Fast forward to 2009 and after a round of ulcers that did not clear up after a month on medications, test results showed that I now also have recurring pancreatitis. So not only do I have to watch my diet and lifestyle to avoid ulcers, I now have the extra good fortune of even more rules and regulations to avoid pancreatitis flare ups that could still occur at any time regardless. I tell ya, how could a girl get so lucky? Someone go get me a Powerball ticket I’m on a roll. And no, this is not some new weight loss fad and I really would not recommend trying it at home.
Throughout the process of discovery and treatment and flare ups and more treatment going now on five years, I have had some interesting observations that I hope to share with you as we follow along this journey together.
First thing that I’m sure that many of you have experienced is that having a chronic or life threatening illness is better than any friend lie detector test you could ever administer. It is amazing how many people that you thought were close friends suddenly disappear and then on the flip side, others that you weren’t that close with become your best support systems. I’ve found support in the most unusual of places as well as having lived through disappointments with those who showed their true colors. But actually, I am much happier for knowing what I do about the people in my life now versus what I thought before everything started and my relationships are stronger for it so there is a silver lining there.
Also along the line of personal relationships are dealing with the side effects of your illness and treatment and trying to make plans. One of my favorite quotes is – “People make plans and life laughs.” Here again you really have a litmus test for who your true friends are when you’re having to cancel plans at the last minute AGAIN because you just can’t get out of the fetal position in bed.
Then there are the “four letter word” terms that patients just LOVE hearing. “How are you?” “I know someone who”….”I can’t imagine what you’re going through”…. And one of my personal favorites, “You’re such a great person and surrounded by so many available doctors, why are you still single?” Truthfully I have answered that one with, “Well, when you are always talking about puke and poop, it doesn’t really give you high marks on the attractiveness scale.”
And for those of you who have more internal illnesses that don’t have symptoms visible to the general public, how much do you love – “Wow, you look great.” Then followed either by, “From what I heard you went through I figured you would really look terrible.” Or the doubters that because they can’t see anything visibly wrong think that you were just playing up the sympathy factor and weren’t really that sick.
This doesn’t even begin to touch on dealing with hospital stays, staff and everything associated. Really, do procedures ever take place at their scheduled time? Yup, don’t mind us, we’re just hanging around not doing much but laying around in bed with tubes hanging from all over our body so what’s another few hours? Don’t they get it that when you have something to look forward to to break up the monotony of your day, we really don’t appreciate the fake out with the continuous delays. And of course, inevitably, the gurney shows up to take you just as you’re falling asleep or have stepped into the bathroom – without fail.
I figure by now many of you are nodding your head in agreement and thinking of even more fun hospital elements – stylish attire at the top of the list, all of the “free” hospital hygiene items that you’re given for your stay (if I never see another pink basin up close and personal it will be too soon), and phlebotomists rounding at 4am to take yet more blood. After which you end up with just enough time to fall back to sleep for 20 minutes before your CP comes in for vitals. You’re only sick, who needs sleep, right?
So that brings me to why I decided to share my experiences with you. While I was in the hospital for one of my longer stays, I started talking to patients and family members of patients and found that there might actually be some good to come out of all of the insanity I’ve been going through. Through my experiences, I am now, along with many of you, a member of a club that no one wants to nor should ever have to join. In addition, those that I met in the hospital were able to talk to me as an outside party that could relate but that they didn’t have to pussyfoot around with, afraid to hurt the feelings of the patient in their life.
For years I had been working in the entertainment business and throughout all of these hospitalizations and recovery periods, my company was great in how they treated me and gave me time and space to heal. However, while in the hospital I realized that for me, I needed something more that would take all that I have been going through and bring some good to others as a result.
Now, I don’t know you and I don’t know what you’re personally going through and I will NEVER assume that I do or tell you how to live your life. However, I do hope that by sharing stories of what I’ve been through, you can find some connection that makes you feel that someone out there does understand or they make you laugh or even get pissed off. Hey, any reaction to get you motivated or thinking is a good one. As you can probably tell bynow, joking and sarcasm are a big part of my personality and what has helped me to get through some of the bad times.
I’m not going to lie, there are still days that I wonder what I did to deserve having to go through this and why I have to live this way. But hopefully sharing with you will not only be a help to you but for me as well as we deal with what we now call “our new usual.”