Friday, November 14, 2008

Topsy Turvy

A strange mood hangs over me today. A nurse came today (the head wound care nurse this time) and she assessed my wound and said it looks great and that it's almost closed. She reduced my nurse visits to once per week now. So I suspect my time of having regular home nurse visit is soon to come to an end. This should be excellent news- and it is. However, a small part of me doesn't want to lose the comfort of having a trained nurse come to my home a few times a week. Whenever I have odd pains or concerns, discussing it with my nurse has usually relieved my concerns.

For example, yesterday I was back up to a spike of pain around 6/10. I was feeling bloated, and wasn't making my usual 5 trips to the washroom. So naturally I was concerned. I took half a pain pill and used a hot water bottle and mild stool softener and today I feel a bit better. I also mentioned it to the nurse who reassured me that the Barium from my small bowel follow through could cause a bit of constipation. So it's nice to have that kind of access to someone with knowledge. It's also nice to be taken care of. She checks my vitals, asks about my symptoms and oohs and aahs over my slowly closing wound- telling me how well I'm doing. Maybe it's childish- but I'm going to miss that motherly attention. This is probably heightened by the fact that my nurse is such a sweet kind woman. But, I'm healing up, so it's time to move on and face the future bravely and nurse free (soon).

I think I know why I feel compelled to blog about my Crohn's. It's because no one really, truly wants to listen. And people really don't know how to console someone with a chronic and often gross disease. No one wants to hear about my bowel activities- and I don't really want to tell them. But when I go into generalities about feeling scared or sad, my family and friends, for the most part, don't know how to respond. Their response is often a generic: "don't worry, you'll be fine." or "It'll get better, you'll see.". As much as my loved ones are trying to help, they really aren't. And I don't blame them. I'm the sick one and even I wouldn't know what to say to myself. I think what I really want is someone to listen, without changing the subject to an unrelated topic, or to what's wrong with them, or whatever. Or to lecture about what they think I should be doing. I understand their discomfort... I bet it puts their own mortality in perspective, and, hell, who wants to hear about diarrhea and cramps even if I do put it in general, non descriptive terms. So, I'm not mad or disappointed in my support network, I just... hell, I don't know what I want. I do wish my local chapter of the CCFC had support group meetings, not just fundraiser planning meetings.

Anyway, obviously I'm feeling a little blue. I have always fought a personal tendency to wail against the unfairness of life, or to focus on the things I don't have rather than all the things I do have. I guess I just have to remember my own advice to count my blessings. And maybe explaining my need for a open ear to my family and friends would help them, to help me.