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

 

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.

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

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 20^th 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!

Fighter in the World of Boxing, has to PHight a different kind of battle!

Fighter in the world of boxing has to PHight a different battle before he can return to the ring.

Elvis Medrano was quickly moving up the ranks in the boxing world, before being diagnosed with Chronic Thromboembolic Pulmonary Hypertension (CTEPH).  Before being diagnosed, Elvis was ranked in the top 10 in the country for his class in boxing. Elvis also competed in and won the Golden Gloves Championships in the lightweight group.
He was recently featured on Inside Edition, the Inova Patient Stories and even Bayer featured Elvis on their Twitter Page.  The Pulmonary Hypertension Association also named Elvis the newest Patient Ambassador! At the Pulmonary Hypertension Association’s International Conference and Scientific Seasons, Elvis was the Keynote Speaker, took pictures with many other PH patients who attended the conference, and more.
Then, one day, as he was training while in college, he fell on his arm and neck and suffered injuries. At that point, he started developing blood clots. Some of those clots traveled to his lungs. At this point, Elvis started having a very difficult time while training for his fights. Symptoms such as Shortness of Breath, and more.
 Elvis shared a story with me about how hurt and sorry he was about not being able to box or train. It was July 14, 2012, a date, he will never be able to forget. It was on that date that Elvis had to stop working out and training altogether. (I think as Pulmonary Hypertension patients, we all have that date we can’t forget. For me, it was September 3, 1998. The date I was given my official diagnosis, as well as October 10, 1998, the day I was put on Flolan, during my very first right heart catheterization).
 Elvis was diagnosed a year after he was injured. He had to see nearly 45 doctors, because, of course, none believed or knew what was going on. Once he found the right doctor, they found the clots in his lungs right away, and he was given his diagnosis of CTEPH.
Elvis went into surgery to have the clots removed, a procedure called pulmonary thromboendarterectomy. PTE is a surgical procedure that removes chronic blood clots from the arteries in the lung. It is a highly specialized surgery that was developed at the University of California, San Diego and is now performed in select hospitals in the United States and other parts of the world, according to the PHA. The PHA website states “Surgeons then make an incision in the center of the patient’s chest and the breastbone, the sternum, is divided so the surgeons can access the heart and lungs. The patient is placed on a heart-lung machine (cardiopulmonary bypass), a machine that will function as the patient’s heart and lungs during the surgery. For a period of time during the surgery, the cardiopulmonary bypass machine must be turned off so that the surgeons have an optimal view to remove the blood clots. To avoid organ damage to the patient when the heart-lung machine is paused and no blood is flowing through the patient’s body, patients are cooled down to 65 degrees Fahrenheit for this surgery. This is accomplished by cooling the blood as it passes through the bypass machine. Once the patient has been cooled appropriately, the surgeons carefully dissect the clots out of the pulmonary arteries.” Elvis actually had the procedure done twice, and is now blood clot and Pulmonary Hypertension free!

As the PHA Patient Ambassador, Elvis says he “…I take really good care of myself, I try to use my social media to help encourage others who are afflicted by Pulmonary Hypertension, I work very closely with the PHA and help them promote the PHA…”

Elvis Medrano considers himself very lucky to have survived his ordeal with Chronic Thromboembolic Pulmonary Hypertension. He has learned many things from his time suffering from symptoms due to Pulmonary Hypertension and the blood clots that developed. He now believes he has the duty to encourage others who are going through the same. He wants to Knock Out Pulmonary Hypertension, the same way he has knocked out his opponents in the past, and plans on doing so in the very near future! He knows he can and will succeed, as he very soon returns the boxing ring, once he is completely healed from his final PTE surgery! 

Elvis after the pulmonary thromboendarterectomy

Elvis before his ordeal with the life-threatening, progressive, incurable Pulmonary Hypertension 

Elvis's Actual Blood Clots after they were removed.  

CTEPH is the only form of Pulmonary Hypertension that is Potentially able to be cured! 

Links found in this story
Inside Edition https://www.insideedition.com/professional-boxer-fighting-get-back-top-after-hes-diagnosed-lung-disease-42138

Bayer's Tweet on Elvis Medrano   https://twitter.com/bayerus/status/1014131676551794688

Innova Patient Transplant Stories https://www.inovanewsroom.org/ifh/2018/04/dc-golden-glove-champ-elvis-medrano-faces-battle-with-deadly-lung-disease-diagnosis/

Articles on Elvis Medrano on Pulmonary Hypertension Association 
https://phassociation.org/washington-d-c-golden-glove-lightweight-champion-elvis-medrano-faces-biggest-battle-deadly-lung-disease-diagnosis/

https://phassociation.org/2018-pha-celebrity-champion-elvis-medrano-to-speak-at-phas-2018-conference/

https://www.facebook.com/PulmonaryHypertensionAssociation/photos/a.10150172330860265/10159916835630265/?type=1&theater

 
Boxing.com  http://www.boxing.com/former_amateur_standout_defeated_debilitating_disease_now_returning_as_pro.html

Charlie's Blog, where Elvis is mentioned  https://charlies.blog/what-is-pulmonary-hypertension/

PHA Canada Ambassador Report http://www.phacanada.ca/en/news-and-events/newsfeed/phinding-your-hope-a-four-day-breakdown-of-phas-2018-international-conference/

Pulmonary Hypertension Association's page on CTEPH and the PTE procedure https://phassociation.org/cteph/pte-surgery/

Twenty Years Later

Listen to my story here, thanks to #PHAware global
http://hwcdn.libsyn.com/p/e/f/f/efff240e98558fae/Alex_Flipse_phaware_podcast_Ep_186.mp3?c_id=22940705&cs_id=22940705&destination_id=420474&expiration=1536005755&hwt=788b9944841c90be458bfb823b78390a


On September 3, 1998, I went to Houston Methodist Hospital and saw Dr Adaani Frost. That was when i was given the definitive diagnosis of Primary Pulmonary Hypertension.
I was  told that if I should pass out again, I had been passing out for many months, to go directly to the emergency room.
That was on October 10, 1998. I was sent directly to ICU where Dr Frost performed my very first right heart catheterization. Upon waking up, (I was put under I was so scared), I found myself attached to Flolan.

20 years later, and, Thanks be to God Almighty , all my angels and    saints and all of you for prayers, I am here to tell my story.

PH will change your life.  You have to adjust your expections of what you thought your life would be like, and accept your New Normal, and you will be just fine!
Pray, believe, (if you do) and most of all have faith in yourself!
And Live the best life you can.

Hugs and Periwinkle Kisses

This is me

I was told that someone blocked me on facebook because I say shit like bitch and fuck. I'm sorry to see them go. But I thought friends accept you warts and all. Guess they weren't a real friend.

Btw, who ever you are, I don't even cuss in every post like some do. Lol not like they can see this.  Right ?  I am sorry I offended you.  But sometimes gosh darn it and sugar doesn't cut it !!!

This is me.  Warts and all

I am Alex.  I cuss. I have depression. I'm a mom, not a very good one no doubt.  I'm lazy AF. I bend over backwards to help people.  I feel unworthy.  If I can't donate money, I donate my time and work.  I am human.  I make mistakes , more than I care to share. I do stupid shit all the time. When someone is angry I feel they are angry at me, even if they aren't. I like to have pity parties. Not like. I just do. When I do something wrong or stupid, I can't stop obsessing over it.  I feel unworthy. I feel like everyone blames me, even if I did it or not.  I don't like being the victim but I play it to a t. My brain is messed up with misfirings, low self-esteem , depression, sinful thoughts , and more. But listen. I'm human.  This is me.  Like me or not, this is me.  Don't like me, bye bye.  It'll hurt for a bit and I'll go round and round in my head about why and what, but then I'll get over it.  Unless you are family or someone I  care for deeply.

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!

Lazy

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.....

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.