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My Diagnosis Anniversary, October 1989

Living with health problems is like a full-time job, without benefits or pay. This week, 30 years ago, I was diagnosed with Crohn’s disease. Here is some of my story…

I had made it to my parents home outside Corinth, MS for a long weekend, after mid-term semester testing.

I was exhausted. My Dad sat me down later that evening, along with my Mom; in our unusually empty house. The television was off, the lights were dim, and it had just turned dark outside. Shadows started to climb the walls. I sat, painfully, thinking that I was going to chit-chat with my parents and then, take an early bedtime for some much-needed sleep.

My Dad (who has since passed away and whom I miss dearly) started the conversation. I’ll never forget the discomfort in his voice as he asked, “Suzanne, are you doing drugs?”

Astonished at the question, I didn’t unsterstand why it was being asked! I was successfully taking more than a full load of classes. I had studied more than I had slept. I think at the time, my course load encompassed 7, or more, different and difficult classes.

“What!?”, I responded. “What prompted you to ask that?! I have a high GPA! Of course not! I don’t have time to even hang out!”, I exclaimed. I was bewildered.

My Mom quipped, “You don’t look well; we’re worried.”

“Suz, you actually look awful – really pale and sickly.” My Dad replied.

Tears welled up into my eyes.

“I look bad?”. I asked, “As in my appearance? How do I look bad?”, as I started to choke back the confused thoughts of what that meant.

“Well, your coloring….”, my Mom went on to say. My Dad affirmed her concern, “Yes, you’re sallow-looking. You look gaunt.”

Here I sat, previously so proud of acheiving and succeeding in my most difficult semester to date. I felt dumbfounded, tired, and too exhausted to be alarmed. I had tried so hard to keep myself going with such a heavy class-load. I thought I was just overly stressed. I thought maybe I had been suffering from a touch of intestinal discomfort and possibly, some irritable bowel.

I had seen a couple of clinicians during the semester, and both recommended a BRAT diet (Bananas, Rice, Applesauce, and Tea). I followed their instructions, but craved real food. However, whenever I ate anything of any substance, I would barely make it through my class before having to rush to the bathroom. I was barely making it to the 45 minute mark; before I would have to bolt as quickly as humanly possible to the nearest bathroom. Nothing was absorbing and nothing was staying in me.

I had gotten to the point that even drinking water would result in a trip to the bathroom. I had lost count how often I was in the bathroom, but I remember telling one physician “FIFTEEN”. As in, 15 trips minimum, to the bathroom – not to urinate – if you catch my drift.

It was so painful. My gut would growl loudly and it felt like a large creature was walking around inside of me. Embarrassed, I would mention hunger and say my stomach was growling. No one questioned that, as I was stick-skinny and looked like I could use a meal.

I was young, however, and had been told in previous years that I had food poisoning. (I had been hospitalized for “food poisoning” at least 3-4 times in my hometown.). I had no basis to compare this experience to. When asking my fellow girlfriends about “stomach cramps”; I was met with affirmations of pain. I thought, “I don’t think I want to have children, or be one with child-bearing abilities!”. At that point, I didn’t even want to be female. I thought my life would be so much easier if I were male. Of course, my limited knowledge of life at seventeen was skewed and my basis for everything was the way I had pushed myself to “just survive and succeed”.

Back at home, I still sat bewildered. My young ego bruised; I sat exhausted and crushed.

“Do I really look like a druggie?!”, I asked, utterly befuddled. I explained about the BRAT diet and my trips to the doctor on and off campus. My dorm-mates had spent an evening rubbing isopropyl alcohol all over my back, trying to get my fever down. Little did we know at the time that was a terrible idea. But, my fever did dropped, some – not significantly – but I didn’t have the heart to tell my friends that I was still suffering. I was humiliated by my predicament.

“We’ll take you to the doctor tomorrow”, my parents assured me. “It’s okay if you’re tired and want to go to bed”, they added. I hugged them and felt a little better thinking maybe a more knowledgeable adult could help. And I went to bed.

The next morning, my Mom got me up and took me to our church’s pediatrician. Thankfully, my Mom helped fill in some of the verbal blanks that I struggled to convey. He immediately sent us to a large, university hospital in Memphis, TN. Before the sun had set, I was admitted and under the care of a gastroenterologist team.

I had met with the head gastroenterologist in his office, with my Mom, and he took one look at my testing and occult blood results from that morning, and had me admitted. I didn’t realize for years just how serious my health was in jeopardy.

After surviving 4 years of “reoccurring food poisoning”, my body finally said, “NO it isn’t – I’ll show you!”.

With a platelet count of over 1 million, a drastically low hemaglobin/hematocrit, severe weight loss, and lack of skin capillary refill (amongst other more embarrassing symptoms); I was in front of someone that could treat me.

I had high hopes that I would be cured before the week was over! I guess we can’t all be that lucky, but after 2 weeks on IV fluids, IV treatments, and bowel rest (i.e., no food orally), I started feeling better. I’ll never forget hearing, “Crohn’s disease has no cure.”

It wasn’t my last hospitalization, or my last “no cure” diagnosis. But, one thing I’ve learned in 30+ years with illness – no one person gets everything.

We all miss out on something in our lives. Make the best of what you do have.

What matters, ultimately, is how well you treat others, yourself, and the opportunities that come your way. And, kindness and compassion undo almost any negative…

I’m doing my best these days to rest, care for my own family, and make my opportunities count.

Thanks for visiting! Peace be with you.

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