dana (dana13) wrote in partners_of_ci,

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wilkommen! bienvenue! welcome!

Have you ever felt alone? I sure did when I tried searching for an LJ community for people whose partners are dealing with chronic illnesses. I thought there would certainly be something, and I was surprised to find out that I was very wrong. (Either that or very stupid, since I exhausted all my search ideas and came up empty-handed.) My next thought was to create one. I know I could use a little support, and if there are others out there who feel the same way, then we might as well try to help each other out.

My story: my partner Caleb was diagnosed with a benign brain tumour at Christmas 2000 (six months before he and I met); since then he has dealt with daily bromocriptine side effects as well as some other strange, unexplained symptoms. We cried so many times after horrible doctor's appointments in which we found out nothing and felt like these people would never help.

But he visited a new endocrinologist last week, and this new guy seems great. He listens, he remembers details, and he actually thinks he may have a diagnosis, a reason for all the weird things my love has been going through. This is great news.

The not-so-great news is that it's likely Cushing's disease, which is a rare disorder often caused by pituitary tumours, just like Cal's. It's eventually fatal, but it can be cured--by a lengthy, risky, terrifying surgery involving entering his brain through his nasal cavity and removing the tumour, which very well could grow back rapidly. The recovery time for this would be quite long, as well.

We're reeling. I can't stand watching him struggle through this, but I feel so helpless; all I can offer is my love, myself. I can't take away his pain, his worry, his fear. And I have this pain and worry and fear of my own. Life feels muted, distant.

I welcome comments and posts from anyone who wishes to contribute to this community. I would love to make this a supportive environment where we can come together to heal ourselves.
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