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

 


























Sunday, December 2, 2018

Breathe Easy & Rest in Peace Sally Maddox


Now that i have had some time to process this  HUGE loss our small community has suffered today , I want to say something, that won't come close to do Sally Kinney Maddox justice.
Sally did so much for us, her PHriends and PHamily.
Serving many times and many years on the PHA board, she PHought tirelessly for us. She spoke at many events around the country to bring awareness to our fight. She advocated for us even when we didn't know we needed it. She lead support groups , got her, i believe, masters degree, and so much more, all while silently suffering with this fucking disease that PH is.
Pulmonary Hypertension is progressive. There is nothing that can change that right now.
I know that PH will probably eventually take me too.  As well as I am doing now, as well as I thought Sally was doing. She suffered silently and I believe didn't let anyone know but those  closest to her. But every time I spoke to her, saw her posts, saw her at conference, a board meeting that I was invited to, or at the PHA offices, she was so full of life and love and a smile for each and every person she came into contact.
Honestly I still cannot believe she is gone.
Although I didn't talk to her much or see her at all in many years, I always have had a huge admiration for Sally. Admiration, respect, aww.and of course I loved her too. This is a.huge loss to the community.
Rest in peace Sally! Breathe Easy!
We need the fucking cure already.

Saturday, December 1, 2018

Bye #KnowVember


Here we are , the last few hours of the last day of awareness month. What a wonderful job we all did raising awareness! I'm so proud of all of us!
I want to personally thank each and every one of you, but since I can't do that, I'll just say thank you for your beautiful words  that have inspired so many of my memes and graphics this month. You guys are all so awesome! Thank you for trusting me enough to make your profile pics , cover pics and memes that you shared all month long. Your sharing my fun, educational and even whiney 'creations'  touched my heart!!! You guys mean so very much to me! I love you guys and look forward to making more awareness raising graphics for many more years to come for all you wonderful people!
So for now, let's say good bye to #KnowVember#PHAwarenessMonth and look forward to all the Holydays, (as my momma says), coming! February is #RareDisease I think after that May is #WorldPHDay !!
From the bottom of my heart
Thank you for your love and support !
Hugs & Periwinkle Kisses
Alex
aka Flippymom

Wednesday, November 7, 2018

Happy Awareness Month! Week 1 November 7, 2018

Here we are, the first full week of Awareness Month 2018!
I do hope everyone is having a wonderful Wednesday & Fabulous November!
I wanted to talk a little bit about my journey today and what it took for me to get to this 20th year of being diagnosed with PH.
First off let me say that it was not an easy ride, at first. And I know all of our stories and journeys will be different. Pulmonary Hypertension is such an individual disease, we are all affected differently, we all have different pressures in our pulmonary artery, and we don’t all have the same symptoms let alone side effects to our medications. I also know that not every medication will work as well as it has for me, and some that didn’t work for me, has done amazing things for you. And that’s wonderful. I think it’s amazing and a true miracle that we have so many different treatments with so many different pathways. The researchers, scientists and doctors have found different ways to attack pulmonary hypertension, and they are looking into more different and unique ways. You know how PH hits mostly women in their childbearing years? Well, they are looking into a pathway that deals with the female body, compared to the male body.
And you know how the endothelin in our pulmonary arteries grow without reason, thicken and create grooves and valleys? They are looking into a pathway for cancer, since cancer also runs rampant without cause or reason. Plus many other ways to attack pulmonary hypertension. I wonder, personally, how our body is basically attacking itself, why don’t they look into an autoimmune type pathway?

Anyways. As many of you know, I was diagnosed in 1998. My journey begins like most others. I started getting symptoms, shortness of breath and exhaustion, go to the doctors, get misdiagnosed for several years, until the symptoms worsen and I started passing out. That was finally when I was diagnosed. I started getting symptoms in 1996. I had just delivered my third and last daughter, woman, in her childbearing years.
I was put on Flolan right away, it was the only FDA approved treatment for pulmonary hypertension at the time. Remodulin was in clinical trials, and my specialist didn’t want me to be put on placebo. My pressures were at 115, which I thought was really quite high, but I found later, a young woman with pressures at 160. I think those are the highest pulmonary arterial pressures I have ever heard about. And this young woman was walking around on Flolan.

Anyways, being sick with Pulmonary hypertension, as you know, is no a fun thing. It affected not only my life but those closest to me. My children, my x husband, my mother even moved from California to be with me and help with the children. To this day, my mother is still my caregiver, and now it’s my granddaughter she is helping me with!
My girls felt so alone when I got sick. I found out years later that they felt I had abandoned them since I was pretty much asleep or in bed for their early childhoods. My oldest daughter blames me for growing up too quickly, having to care for her sisters while I was sick in bed. She was 6 years old, and my youngest was 2 when I was diagnosed. My middle daughter was 5 at the time and she was a high needs child. But I really couldn’t do much of anything to care for these girls. Exhaustion plagued my every waking moment. And regardless how much I slept I would still wake tired.

Fast forward to Tracleer (Bosentan). What a day it was when I was taken off Flolan and put on Tracleer. It was amazing! And then a few weeks later, they removed the Hickman catheter I was on.  I was leery about having them take out the catheter since all I had read about online, people were saying Tracleer wasn’t working for them and they had to go back on Flolan or Remodulin. But I did it and it was amazing! I was on Tracleer for 11 years, until one day they found that I developed pulmonary venous hypertension, a type of pulmonary hypertension, which is caused by systemic high blood pressure, sleep apnea, and other controllable things. This was caused by diseases of the left side of the heart. But I don’t have high blood pressure, and my apnea is being controlled for over ten years now, and my cholesterol is being controlled very well with pills and diet, and more.  All of this to say, that they switched me from Tracleer to the generic of Revatio, Sildenafil.
This is my pulmonary hypertension story up until now. I hope to post and go live, (on Facebook), every Wednesday in awareness month. I hope that you will join me!