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Newsletters: How I Learned to Cope
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How I Learned to Cope

Cheryl with grandaughter, Cecily, and daughter, Hayley.

Cheryl Cheney Fox

I have an intestinal disease that was diagnosed when I was a child. I won’t bore you with all that I have gone through, but I am on home parenteral nutrition (HPN), like maybe you are.

While we may not have the same disease, I doubt the differences between our illnesses matter relative to coping. I think coping is necessary for all who suffer life-changing illnesses. I will try to share with you how I learned to cope with being sick for most of my life.

 

Desperate in Dallas

In the mid-1990s my intestines were inflamed with Crohn’s—yet again. The flare was so bad, my intestines were almost completely blocked. At the time the doctors were telling me if I had another resection of my intestines, “my life span would be greatly reduced.” I had a small child, I was a single parent (by choice), and I was so ill I was unable to eat even small meals. As my daughter Hayley lay next to me asleep at night, I would cry and think, what I have done to this poor child? I begged God to let me live long enough to see her grow up.

I had friends who took it upon themselves to find something that might “cure” me or make me significantly better. They found a doctor in Oklahoma City (I lived in Dallas) who was considered the best Crohn’s doctor in the United States. He was doing research and needed patients. Of course I spent my last dime—and I only had a few—and made the trip to Oklahoma City to see the doctor.

 

Real or Placebo?

The doctor enrolled me in a double-blind study. For the next two months, I dutifully awoke early in the morning, gave myself an injection, and went about my day. I carefully maintained a journal of how I felt, how much I went (my output), pain, food intake, etc. I had noticed previous to the study that there were days when I felt great, though my Crohn’s was still bad. I had every other symptom—profuse diarrhea, pain, and so on—and I never understood why I would feel so well some days.

Anyway, during the study I was convinced I was getting better. I mean, I felt great, though my other symptoms had not diminished at all. At the end of the study I made the three-and-a-half–hour trip to Oklahoma City to complete my participation in the study and to find out whether I had been taking the placebo or the study medication.

When I got there I was convinced I was giving myself the actual medication. I was quite surprised when the doctor told me I was on a placebo. Initially I was upset because I wanted “the drug,” you know? Never mind feeling like I had been duped and being just a tad embarrassed at realizing how I felt must have been all in my head! Do you know what I mean?

Then it HIT ME. To some degree, how I feel or how I am doing at any given time has to do with my perception. In other words, half my battle with my illness is in my head. What a GREAT revelation! I can control how well I feel physically though I cannot stop the disease. Does this mean I don’t have bad days? Of course not! I allow myself to be angry, lick my wounds, cry or whatever, on occasion. I have to because I am human.

 

Flash Forward

My daughter is grown now and she recently had my first grandchild. I never thought I would get to see her grow up, much less see her get married and have a baby. But, and by the grace of God, I did, and I am convinced it’s because of my attitude. What a glorious ending to what was such a difficult and heart-wrenching few years.

I hope this helps you cope, even a little. Always remember, you aren’t alone, no matter how it may seem.

Editor’s note: Cheryl was invited to write this up for the Oley newsletter after we saw a post she had shared on the Oley-Inspire forum. When you are feeling alone, the forum can be a good place to go for support and friendship. Visit www.oley.org, and choose “Oley-Inspire Forum” under the “Meet Consumers/Patients” menu.

LifelineLetter, November/December 2013

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This website is an educational resource. It is not intended to provide medical advice or recommend a course of treatment. You should discuss all issues, ideas, suggestions, etc. with your clinician prior to use. Clinicians in a relevant field have reviewed the medical information; however, the Oley Foundation does not guarantee the accuracy of the information presented, and is not liable if information is incorrect or incomplete. If you have questions please contact Oley staff.

 

Updated in 2015 with a generous grant from Shire, Inc. 

 

This website was updated in 2015 with a generous grant from Shire, Inc. This website is an educational resource. It is not intended to provide medical advice or recommend a course of treatment. You should discuss all issues, ideas, suggestions, etc. with your clinician prior to use. Clinicians in a relevant field have reviewed the medical information; however, the Oley Foundation does not guarantee the accuracy of the information presented, and is not liable if information is incorrect or incomplete. If you have questions please contact Oley staff.
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