I'm sitting at my desk, watching episodes of Law and Order SVU on the computer and doing my IVs. I just got home from dance practice - which was amazing! - I didn't feel out of breath or have to rest once in the two hours. I feel so much stronger!
And this is my life. Dancing and IVs. Dancing and meds. Dancing and naps. Dancing and showers. Occasionally, it's Dancing and Dancing, or Dancing and Fun with Friends, but usually there are meds in there somewhere. It's what I live every day.
I heard a woman at the hospital talking on a cell phone today about how, if she entered a study she would have to do "something medical" four out of seven days. And she said, "How can I live my life like that?" And it almost hurt, because my life is medical seven out of seven days. Every day I have my nurse come and do my chest pt (the link is more than anyone ever wanted to know about chest pt... but if you want to learn...). Everyday I take my 50ish pills. I do my nebulizers -hypertonic saline - and I do my vest. I rinse my nose about once a week, I pour my meds once a week and order refills from the pharmacy. And there are other things I know I'm forgetting. This is just how I live. This is my life.
This is my life, and I'm going to live it despite my daily "somethings medical."
I decided that I don't need my mom to come back down to help me go to clinic. My parents will now come down this weekend because my dad wants to go to the train show. He loves trains. I'm so excited to go with him because I love watching my dad do things he loves. It's really fun to watch him light up.
I love to go fishing with my dad. I have no interest in fishing or sitting on a lake for hours at a time, unless it's with my dad. My dad is the most wonderful man alive, and sometimes it makes me sad when my mother makes comments that love doesn't exist or when she complains about my dad. I've never heard her talk about falling in love with my dad, but I have heard Dad talk about loving Mom. I think it's really wonderful that my dad loves her despite all her faults. And he STILL loves her - 30 years after they started dating.
I know love exists, but I don't know if I'll ever be happy in a relationship because I have my dad as a role model - and it doesn't get better than him. He's brilliant, and fun, and my dad.
That's why I'm excited for this weekend. The Train Show. I don't really like trains, but I love the quality time with my dad.
Today I went to the hospital to get PFTs done - they screwed up the time which frustrated me, but I got over it. When I first did my PFTs I was so disappointed. The numbers weren't as high as the last time I finished a round of IVs a month ago. So I don't know what to say, except that I feel amazing, and that's all I can go on. If I go by what the numbers say, I probably shouldn't be able to dance as much as I do, but I can't go by the numbers.
Another problem arose at the hospital. I have a friend who has been inpatient for about a week, and they are making her go home tomorrow - and not on home IVs. Her PFTs have gotten better, but still, she needs to finish the course of IVs so the bugs don't get more resistant. This is the work of Dr. doPico and his nurse practitioner Micalene. I can't stand either of them. This is absurd!!! I told her she needs to fight it, but she's just so tired of fighting.
I'm tired of fighting the doctors too - which is why I've decided I will never be in that hospital again until I am ready for transplant. They can do my transplant and then get me the hell out of there and I will go on with my life. No one knows what the hell is going on there, and it's scary. I don't want to go back ever. Ever. Never. Ever. Ever.
My Very True and Important Book Report on Charlotte’s Web, Part One - [image: charlotte_featured] While we have all been motivated to take on more of an activist role in our daily lives, we also need some intermittent distract...
1 year ago