Tuesday, March 13, 2018

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!

Thursday, March 8, 2018

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.

Saturday, March 3, 2018

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!

Sunday, February 25, 2018


Ok so i think it's pretty common knowledge that i am lazy.
Id rather sit and watch tv than go for a walk, clean up, do chores,  etc.
But this morning i heard myself say something that shocked me. Ive always been good in my speech to keep laziness out. That doesn't include typing though lol. Today I saw Stevie with cheesy cracker fingers running her hands thru her hair.  Ok messing up the water fountain i had just put up. I said, 'you are going to need a bath kid, hurry up and finish so I can get you a bath'.
Its just laziness on my part. But actually took me a bit to think of the correct way to say 'I can give you a bath'. Argggg.....

Monday, January 1, 2018

twenty seventeen

2017, was at best, wonderful and fun, and at worse, horrible horrible horrible. Funny how life can change from day to day, hour to hour.
When I woke up early one morning in January 2017, I was playing with Ellie, having fun with Stevie, about to make breakfast. next moment, I was rushing to the hospital in D.C., to see my grandson, cold, in his mother's arms. What a horrible horrible day. :( :( :( the sadness of those days, weeks, months, became less horrible, less all-encompassing. I could laugh again with Ellie and Stevie and I ate more. Then, one day in April, I met someone. and we talked and talked, over the days and weeks and finally went out. it was nice.
I won't ever ever ever forget Benjamin. no way I could. But I am forgetting how he felt in my arms, the sound of his cries, how he smelled. and I hate that. I hate PH and all other chronic illnesses I have, for taking away those, and other, memories.

I am not an optimist person. I don't look at 2018 and think, good things are on the horizon. I just think, With God's help, things can be better!!! but at the same time, in the back of my head, I doubt..... I think that would be depression, low self-esteem and the demons that are constantly at war with me.

Thursday, December 15, 2016


What do you think of when you hear someone is sick?

  •  Cold
  •  Flu
  • Virus
  • Tummy ache

Yeah these things but do you think of the things that people don't "get over"? things they can't take a pill for to no longer have their sicknesses?
 Chronic Conditions such as 
  • Depression
  • Pulmonary Hypertension
  • Cystic Fibrosis
  • Cancer
  • Poly Cystic Ovarian Syndrome
  • Fibromyalgia (chronic pain)

Most people don't. Yeah for some of these, medications can help. But then you can get a flare up and no amount of medications can touch the pain, or shortness of breathe, or palpitations or any other symptom you might be having.

And within those chronic conditions are the invisible diseases, those that can only be seen by echo, ultrasound, or x-ray. 

You can add all those conditions up there to the list of invisible diseases! 

So if you see someone getting out of their car in a handicapped space and they don't LOOK disabled, believe me, they probably are!!! You can ask if you want, but dont yell scream or berate them. it makes having an invisible chronic "sickness" all that harder!!!

Monday, December 12, 2016

"You never know how long we have left, with PH"

Someone told me the other day, :
"You never know how long we have when you have a chronic illness like  Pulmonary Hypertension!"

I thought and thought to myself. How would I respond to that? Would I agree like I have always done - since this has been my thoughts too?  I used to question week to week, will that would be the the last week I'd be alive? Or, in the back of my head,  whenever anyone would say something like,  see you later, or a doc would say, see you in 6 months, in a very small voice I would think 
"Yeah if I  still around!"  

So,  as I was typing my response to this person, I realized that I no longer say these things to myself!!  This is a major break through for me!! 
I have stopped the negative self talk, that I thought I was doing in my head but it became so common for me to be alone during the days, I started saying things like "you are so stupid!" Or "brilliant Alex! Just F* brilliant! "  I was once at a meet up where we were using different tools to draw with.  I said allowed to myself, but loud enough for the woman next to me to hear, "figure it out Alex, or are you too stupid?"  After another time of telling myself I couldn't do, this woman says to me, "can we please stop the self hatred?" I was so embarrassed I wanted to crawl under the table.  I think that was the last time I have said anything to myself since then.  

I have heard people say,"by the time you are ...insert ramd age here... you should be comfortable in your own skin. I think I may know now what that's like. 
So below was was my response to this person.  I am so glad I am realizing this now!! Am I going to stay 2 steps forward and four steps back once in a while? I'm sure. I'm only human! As long as I can dust myself off and get back to where I am now, or maybe even further than I am now. That'd be great!! 

 know, I've always thought that too. Or if we don't laugh we'll cry. But honestly just reading that I thought to myself , we will never know, with or without PH. I celebrated my 18th year since diagnosis a few months ago and I think it's been a slow process but I don't think about anymore. I have also stopped thinking of "if I'm still alive then..." when someone invites my out or something. You know? 
I have had such a blessed life since being diagnosed, more so since I got divorced.. 
I feel happy now. I've even noticed that we are in December and I still haven't been knocked down by depression , so much so that I end up having readjust meds in an inpatient hospital stay. All of this is just now dawning on me!!! God willing I'll be ok throughout the winter time and will make it the spring without depression or suicidal ideations!!! 

I'm sure having a new granddaughter and a grandson on the way has helped me tremendously!! But wow! Knowing all this now really is making me cherish my life more!!!