Monday, May 6, 2019

Lilly Detelion

I met Lilly in 2014, as I was visiting. my mom. She was probably 7 or 8 years old, a sweet little thing, who was always on the go and always smiling. Lilly's mom and I became facebook friends, and when I would go visit my mom, I would stop in and say hello.
A few years later, I moved in with my mom and I believe Lilly and her family had already moved away, just about an hour away.  I followed Lilly on social media and seemed to be doing wonderfully, she was usually giggling with her classmates, or posing with friends.

That's why it came at such a huge shock to me to find out that Lilly had passed away. I don't know if anyone knows what happens, besides her family. My heart sank, I actually felt it sink. My arms started tingling, and I broke down crying.






I honestly HATE this disease! It has taken away so many of my PHriends. It has robbed so many children of a future they should have had, and a childhood that they deserve. But also, it causes us to not have any quality of life.

I imagined Lilly as a young woman, she could have conquered the world! She could have been anything she wanted. It just really really hurts my heart, and each time I think of her, I am reminded just how bad losing her really is.

Breathe Easy Lilly, and Rest in Peace.
I love you!!!



Wednesday, April 24, 2019

Charity you will not be forgotten !!!





Breathe Easy Charity Sunshine Tillemann-Dick 😞😢😭 I'm shocked and stunned and still trying to process this loss! She was sweet, always kind, super talented , excentric and always a PHighter ! Charity was a huge supported for PHA and everything the Pulmonary Hypertension Association stood for! The last time I spoke yo Charity was during a Facebook live video chat. I love you charity and will miss you so much!!!

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, December 31, 2018

Good bye 2018. You were good to me.

These are some of the highlights of 2018 for me. As is usually the case, my family, my children and grandchildren mean the world to me to me, so they are all there! Unfortunately, I only got to see my oldest daughters on video chat or pictures that they sent me. Since those are not my pics, I am not sharing them in this blog.
Went to Pechanga casino w Robert & Michael

My friend Gaurav came to.visit and took us to breakfast and for a ride around the beautiful wineries!

I celebratedy 20th year since diagnosis with Pulmonary Hypertension