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This is something that I tend to do too much. I tend to expect things, and I suppose unrealistically at times. I will expect from myself, my friends, my family, outcomes of situations. More times than not I’m disappointed by these expectations. I do find myself consciously telling myself not to expect things from people and situations.

I was disappointed at the support group meeting last week because I expected a different outcome. G-J had given me a copy of a checklist of symptoms that she uses with her husband. I used the shell of this to make one to use with Nicole. I used it when I took Nicole to see her specialist in November. He loved it and thought it was awesome (I didn’t expect this). I didn’t expect to see a correlation between Nicole’s nausea and her taking tylenol/codeine either. I thought that I would make copies of it and let people in the support group have it. I stood and spoke about it and quickly explained it. I was disappointed that nobody wanted one. I remember thinking when the doctor told me I should submit it to PHA that it wasn’t “good enough” and it would be stupid to think it would be. I thought it was good enough to share with the support group and then nobody was interested. I was disappointed. I shook off the disappointment and thought heck at least I have a years worth of copies of the checklist. I will always be honored by the compliment from the doctor. I am grateful to G-J for sharing this with me as the sheet allows me to see if Nicole’s symptoms are happening on a regular basis (easier than her daily sheet) and try to figure out why they are happening.

I have found if I don’t expect a certain outcome from a person or a situation that I am not disappointed.

About Jane

Profile photo of Jane
My name is Jane and I care for my 19 year old daughter, Nicole, who has several congenital heart defects, Eisenmenger's syndrome and pulmonary hypertension which is a rare, life-threatening, incurable and progressive lung disease that causes blood pressure within the pulmonary arteries to become higher than normal. She also has several other health issues that are not as severe.I have two blogs one is "A Day in the Life" which chronicles Nicole's diagnosis and our everyday life. My other blog is "Let's Get Organized" which chronicles my struggle to get the clutter out of my house and get organized.

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One comment

  1. Profile photo of ejourneys

    Jane, IMO the people in the support group don’t know what they’re missing. The correlation you found between Tylenol/codeine and Nicole’s nausea shows that the checklist has tremendous value. I agree with your doctor and would encourage you to submit it to PHA. The best outcome would be that PHA says yes and that another member benefits where they wouldn’t have before. And if PHA says no, you will at least know that you’ve tried.


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