9/24/2010

Me on steroids, grinning and bearing it!

Last weekend was my annual Mother Sans Child weekend with a group of women I have known since Ben was 3. We took a class together called "Mother/Child" and at the end of that class we decided to take a weekend for ourselves up at Green Lake. It was so successful it became an annal event. It is sacrosanct.

It is a time to connect and commiserate and other than last year when I was up at Mayo we haven't missed a year. We started out as 11 women I believe and along the way lost 3. We have been a core group of 8 for quite a while now and even though one of us has moved to Connecticut we still find the time and means to stay close. These unique and special women are more than friends. They are my touchstone. These women know me well, challenge me to be the best I can be and always forgive me when I'm not. I hope I do the same for them. Sometimes due to work or family one or 2 of us isn't able to make it to Green Lake but they are always there in spirit and no less a part of us because they aren't there. This year we were 6 at Green Lake.

As I mentioned in my previous posting I gave my Mayo trip a B but I have to admit that I have been struggling more with the realities of my illness in the last few weeks. Tomorrow is the anniversary of my BMT and it weighs on me. I have been battling with amyloidosis now for a full year and I am tired.

While I am in the process of cutting back on the steroids to take care of the Cushings Syndrome it has to be over time so I have yet to really feel any of the benefits. I am grossly bloated in my neck, face, shoulders and midsection. Not only is it unattractive it is uncomfortable.

When my dear friends arrived on Friday my steroids had quite obviously kicked in and I went on a rant (roid rage) about how it drives me crazy when I run into people that they invariably say "you look great", which in my mind I do not. They suggested I try and express my feelings in my blog so here is my attempt.

First let me say that I know when people say I look great they are trying to be nice and encouraging and for the most part what they are really trying to say is it's nice to see me out and about. I get that. But here's the thing, this illness has played havoc with my appearance and I do not look like myself. I have been told I see it more than others but that makes it no less real to me.

Every time I look in the mirror I am reminded that I have this illness and every time someone says I look good it does the same thing, it reminds me. I wish I didn't care so much but I do. It's bad enough having amyloidosis but do I have to look like crap as well? The answer unfortunately to some extent is yes. I need some level of steroids for the velcade and my kidneys. So here I am battling something else I have no control over. You gain some weght, you diet, you get some wrinkles you botox, you bloat from steroids you grin and bear it. As I said I am cutting back and I am hoping soon to look a little less bloated but until then if you see me could you just say hi, it's nice to see you out?

I know, I'm a pain!