I've been trying to figure out what to write on my blog. my 20th year since diagnosis anniversary is coming up, and I was thinking I would say what I have learned since diagnosis, what life has been like since diagnosis, how I have lived my best life these past 20 years since diagnosis, but honestly, have I? my best life I mean, I spend most of my days just lounging around watching Stevie ( or Ellie before her, and my own kids before them), and then watching shows. I have done a lot of advocating over the years, but that stopped a few years back, going on the Hill and lobbying, for example, for whatever reason.
And after the first few years after diagnosis, being on flolan, and then subsequently being weened off Flolan and 11 years on Tracleer, I was able to go back to work part-time and I really enjoyed that. After those initial four years of going (repeatedly) inpatient in the hospital, the thing that has affected me the most is depression.
it never leaves me, even when I'm having a good day or couple days, it's still in the back of my head, taunting me. And those that when I'm not doing that good with depression, it manifests as anger. I am really not an angry person. let me tell you. And I so totally hate that I get angry and bite peoples heads off. you know what I mean? And I so regret it.
When I'm having a good day, if someone says something to me that is upsetting, I could have played it off. But really, not anymore. I lash out and regret it almost instantly. And then, at night, as I am laying in bed, trying to sleep, the thoughts of the day come running back. it's like clockwork.
- I've gotten ready for bed.
- I have my CPAP on,
- and I have said my prayers,
Why didn't you say..... Why did you scream why did you lash out? How dare they say.. and so on and so on. and it doesn't matter that I know I can't say what I think of, or that I already apologized. Doesn't matter that I know Stevie will wake up super early and it's already nearly 2 in the morning. I just hate that!
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