What have I learned, for myself and about myself

1. As much as i want to, i Cannot work, not so much due to PH but fibromyalgia pain. 
2. Depression is so much worse if I don't take care of myself.
3. Financially I cannot due this on my own. I've had to swollow my pride and ask for help from family and the state
4. With help, I can not just survive but thrive
5. This is not the death sentence they said it was, I have had nearly 20 years since I was diagnosed, 18 years longer than the docs said I had!
6. I have to be gentle with myself, not berate myself if I cannot do something due to limited energy or funds or depression, or whatever.  I do what I can when I can and that just has to be enough, for me specifically.
7. I have to take care of myself and advocate for myself, no matter how scared or incompetent I may feel.

I have found myself to be much more fulfilled and happier when I follow the above.
It's been a very rough road. And I know I'll hit bumps and snags and may end up in the proverbial ditch now and again, but with God's help, I can get out of it again!

taking stock

every few years, I go through a mini-crisis., can't call it a midlife crisis, cuz I don't even know where I am in my life cycle. Most days, I feel like i'm in my twilight years,

Anyways, I look back and see how I've done and what I have accomplished. and honestly, i have been sorely lacking. problem is, it sends me into a tailspin. well, I'm at it again. and I really don't like what I see, what I have done, and even what I have become.

I wish I knew why I do this to myself. I know we are supposed to take stock, improve our selves and our lives. but, I am not. So why do it to myself? it's like clockwork and i just dont know why.

just thinking

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,

and then like someone turns on a switch, my brain goes into overdrive.

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!