Needlestick anniversary...

The horses that live by the Moose lodge

Today is the 21^st anniversary of my needlestick. I’m always a little confused about whether I should mourn or celebrate this day. The reason I say that is that I’m pretty sure my life would be completely different if I hadn’t gotten stuck and I really like my life for the most part as it is now. Having a terminal illness has certainly changed me for the better in a lot of ways. I have a lot more compassion for people than I think I would have otherwise.  I laugh harder, I forgive quicker and I’m more open.  I was just thinking this morning before I got out of bed that if my virus was a real person, today it would be allowed to go into bars and drink! I know, nutty thinking, right?

Yesterday was a day of highs and lows.  My massage with Carmen was awesome.  She really worked on my legs and got my quads nice and stretched out.  I thought I was having problems with my knee and it turned out it was just that my quads and hamstrings were really tight.  I left her feeling fantastic. 

After lunch, I called the lady in charge of the clinical trial in Seattle and the first thing she asked me to do was to send my lab work containing my resistance panel, viral loads and a year’s worth of progress notes from my ID doctor in Billings.  So, off I went to the Office to fax everything to her. She called me back about an hour later and said she had looked over everything and that I don’t qualify for the trial.  She was real apologetic but said that it was because I went off meds almost a year ago. I explained to her that I did that because they were not working and I saw no reason to continue to take something that wasn’t working, causing bad side effects and that was costing my insurance over $5000 a month!  We had a long discussion about the whole thing but there’s nothing she can do as the trial must follow strict protocol.  Then, she told me the most bizarre thing.  She said that unfortunately, my best bet would be that I fall ill with some kind of major cancer. If that were to happen, she’d like to hear from me again and they would be more than happy to try the stem cell transplant on me. I was flabbergasted!  So, I guess I’m supposed to hope for more cancer? 

So, I’m back to square one on what to do next.  Rob and I had a long talk last night and we’re just not sure what the heck to do.  Well, really there’s not a whole lot I CAN do at this point. I’ll just have to keep doing what I’ve been doing for the past year, taking care of myself as best I can, eating a fresh diet and staying away from sick people.  I’m going to keep checking the clinical trial boards, of course, to see if they start any up I might qualify for.  I’m also thinking about writing some letters to a few of the more prominent AIDS docs to see if any will respond with some ideas.  There have got to be others out there like me, wouldn’t you think?

Yikes, it makes my head hurt thinking about this stuff.  I am so glad that I’m a nurse, because at least I do know how to take care of myself and I’ve kept up my license so that I can get on all the various internet sites that are only accessible by licensed professionals to get good information. I really am doing quite well right now, too.  To look at me, you’d never know what was wrong with me.

This morning, I have to take Rob to get his windshield fixed on his new truck. Because they use dirt here instead of salt for snow mitigation, everyone is always getting big cracks in their windshields around here.  I guess it’s better than the rusting you get with salt, but sometimes I wonder. Afterwards, I’m going to go pick up my girlfriend, Gin, and take her out to breakfast.  I think this will be a day of visiting with friends. I need to bounce all this information I just got off some people so I can get it all straight in my own head.  Now that I know I’m on my own with everything once again, I need to formulate some new plans on how to stay healthy and there’s nothing like friends to help you figure things out, right? As long as no one tries to talk me into any of those stupid vitamin drinks that are all the rage, we’ll be good.  My oncologist in Billings, who is also a naturopath says that all those things are just a rip off and the best way to get any nutrition is to eat things in their primary form.

Anyway, hope you have a spectacular day!  I’m planning on it, despite a little bad news.