A Rough Time

This is not going to be a happy blog post. Last week was a very bad week.

I had not been doing well mentally going into it - having a hard time with all of the new changes in my life (not working and getting sicker.) Then Todd left for a week, my Aunt died, I was hosting a bachelorette party at the end of the week three plus hours away. Then I came down with some kind of body ache/fevery virus for two days (less than a week after coming off IVs) during which I felt absolutely miserable. To top it all off, my blood sugars were running in the 300-400s because of problems with my pump. It was one of the lowest times in my life.

But, I trudged forward. I don't mean this in an 'aren't I amazing' kind of way but rather a 'I was so lost and downtrodden that I had no idea what else to do other than attempt to put one foot in front of the other' way.

Fortunately, my fevers broke, I started feeling better, I upped my antidepressants, I got tested and was once again negative for the flu, I said to hell with my pump and switched back to shots ... and I made it to the mountains for the weekend, which was a great success and a lot of fun.

But the best part, honestly, was coming home from the mountains to Todd. Problems don't get solved or go away when you can talk to someone you love and trust so much, but they do become something that seems somehow more manageable. Plus, you know how sometimes being able to say something out loud makes it less scary? I felt like that, too.

My moment of truth

My breathing has not been great. And I knew it was going to be even more of a challenge with the altitude of the mountains. It makes a BIG difference. I was running my oxygen basically at full blast up there (5 liters) and still not able to do a whole lot without de-satting. I took a shower and my sats went down to 80 - that's the lowest I've ever seen them at. I really had to go slow and pace myself - I felt the life of a very sick person had suddenly been thrust upon me.

When I was driving home, it hit me: my lungs are failing. They are getting worse and worse, a little at a time. I'm not trying to be negative, it's just something I feel. And the worse my lungs are, the bigger the small changes feel.

I'm scared. I'm not ready to die - who ever is. And it struck me that my brain could be so alive and yet my lungs on their way out...but I guess that is how a body works. It goes until the weakest part fails and then the rest is forced to follow suit. As intellectually puzzling as it feels, it is the way of the world.

So two things are happening. I am trying to reassure my ego with my zen self that this whole process is okay...I don't want to waste any more time or energy - precious energy! - than necessary fighting the inevitable. On the other hand, I want to continue to be the realistic, proactive patient that I am and get to Duke for transplant work-up before it's too late.

This week ends three months of my short-term disability. I can't express how frustrated I am with where I am at, with my lack of improvement. But at the end of the day I know that I have done everything I could have done that I am willing to do to get here. So I am okay with it.

Until later -