Sunday, January 27, 2019

Midlife crisis?

I will be 49 in April. I'm old  I'm a Nana for heaven's sake!
There are so many things I wanted to do with my life.  I've seen and done so much more than I ever thought I would.
I've lived so much longer than they ever thought I would. than I ever thought I would  I'm on borrowed time, it would seem. 
Idk what I have to give. What greatness is in me? Idk. I doubt often my worth in this life . What am I doing to create greatness?
I talked to my shrink. She seems to think this is my "midlife crisis". Going back in my mind , looking around and being totally fed up with how little i have done. I raised my kids. Yes. I am proud of that. I am proud of them. But really, I spent their formative years in, what I thought , was my death bed. So did I raise them or did they raise themselves.  I'm forever proud of my girls.  But what else have I done?
I feel like I could have done so much more had I been healthy, mentally and physically. Could I have taught kids like I wanted ? Could I have sang like I truly wanted to in high school, and followed that dream? Damn i really thought I could have been a singer ! Then maybe a teacher? I had dreams once upon a time ago.
I can't blame everything on ph. I've never had the drive or umph to get out and go for my dreams. 

People like Sally  may she rest in peace , Chloe & Sean Wyman may he rest Peacefully, they went out & lived their dreams!! So many others are despite their diagnosis.

It's not to late for me to do something , i know. But what ?
These thoughts keep going round and round in my head. I'm able yo keep the negative self talk to a minimum, which is good, but how good is going back and taking stalk and not working to make my life better?
Can things really get better ? Idk. I don't know.

Thursday, January 17, 2019

Cheryl Switzer we will not forget you


I tried to find a pic of us both together from when I went to San Fransisco and i went to visit her.

Cheryl Switzer started PHCentral.Org together with Michael, who lost his beloved to PH, Carol , Ph'er who lost her battle , and her husband, Armond.
PHCentral was always a volunteer website that strived to give patients as much support, help and information as humanly possible.  This was how I met Cheryl. I volunteered as much as I could, and ran a few boards, such as PH Land.
Cheryl was a small woman in stature, but her ideas were huge, and her love for life was bigger! She worked so hard to keep PHCentral going, but it seems it wasn't enough. The time for PHC came to end, but even though I didn't keep in touch with Cheryl, I am sure her work to support PHers, did not end.

We lost a pillar in our small community a few days ago. Someone who lived her life to help us, those PHighting against Pulmonary Hypertension.

And our community has gotten exponentially smaller !
Breathe Easy Cheryl ! You are already missed

Wednesday, January 9, 2019

Do you know how hard it is?

So I belong to many Facebook groups as most of my non healthy friends are as well
1. Pulmonary Hypertension
2. Fibromyalgia
3. Adrenal insuffiency
4. Sleep Apnea
5. Crafting groups such as one for Dollar Tree Crafters  etc

I just wonder if my healthy friends know how difficult life can be with chronic, incurable , Progressive diseases such as I - we - have ?

For example. I wanted so badly to craft a few days ago.  I baracaided myself in my room plugged in my glue gun and crafted until my body said no more !!!!
Half hour later, I have half an ornament done, without knowing when I'll be able to finish it.

Thus is life. It sucks. But I'm breathing (sometimes harder than normal ), walking (a lot slower lately), and no I'm not going to lie qnd say I'm kicking butt cuz these "Diseases" "conditions" whatever you want to call them, feel like they are kicking my butt lately.
My day will come again hopefully soon, when I can craft for longer than 10 minutes , rest, 10 minutes , rest and so on, and I'll be kicking butt again!!!!!
The hole is where the lace or ribbon will go to hang it from 

Monday, January 7, 2019