All is Phair in Love and War

This is my life. From my children to vintage house projects to living day to day with a chronic life-changing disease. This is me.

Rise

While at the gym this morning, I realized something. I typically just walk on the treadmill for 30-40 minutes at a low – medium speed. Don’t worry, Santa got me lots of tech gadgets to track my heart rate, oxygen, etc. 🙂 Our Gold’s Gym has a Cinema Cardio room and its amazing. I don’t really care about the movies; I usually just jam out to my own music anyways. But I love that the room is dark and cold. I feel like its just me in there. Anyway. What I realized is that I NEED the gym. For starters, where else can I walk, in the dark, with my eyes closed, in my own world, and not run into things??? Haha. I crack myself up. But seriously, it sends me into another world, where there is nothing else to worry about except listening to my music, feeling the lyrics in my soul. Its during these moments that I like to write down songs to use for my 6 minute walk tests that I have to do at each doctor appointment. Today I listened to “Rise” by Katy Perry. THe lyrics are powerful and really spoke to me. It is my anthem to PH.

I won’t just survive
Oh, you will see me thrive
Can’t write my story
I’m beyond the archetype
I won’t just conform
No matter how you shake my core
‘Cause my roots, they run deep, oh

Oh, ye of so little faith
Don’t doubt it, don’t doubt it
Victory is in my veins
I know it, I know it
And I will not negotiate
I’ll fight it, I’ll fight it
I will transform

When, when the fire’s at my feet again
And the vultures all start circling
They’re whispering, “You’re out of time,”
But still I rise
This is no mistake, no accident
When you think the final nail is in
Think again
Don’t be surprised
I will still rise

I must stay conscious
Through the madness and chaos
So I call on my angels
They say

Oh, ye of so little faith
Don’t doubt it, don’t doubt it
Victory is in your veins
You know it, you know it
And you will not negotiate
Just fight it, just fight it
And be transformed

‘Cause when, when the fire’s at my feet again
And the vultures all start circling
They’re whispering, “You’re out of time,”
But still I rise
This is no mistake, no accident
When you think the final nail is in
Think again
Don’t be surprised
I will still rise

Don’t doubt it, don’t doubt it
Oh, oh, oh, oh
You know it, you know it
Still rise
Just fight it, just fight it
Don’t be surprised
I will still rise

New Favorite Space

This is my new favorite space in the house. Its part of our laundry room. It started out as a boring, white, storage room. My amazing husband transformed it into an organizational area for us, which I have been dying for! He built the shelf from scratch. We got the wire baskets from Hobby Lobby and there is one for each of us. The vintage fridge was an estate sale find. It works and keeps our beer ice cold 🙂

Before

Overcome

Since the start of the new year, 5 members of my Pulmonary Hypertension community have passed away. The most recent was a woman whom I had been emailing over the past few months. She was younger than me. She has a little girl and a husband. Last year, there were several deaths as well, but it seemed like the majority were “older”. I know that it is just as sad when ANY one dies, I am not discrediting their deaths. It just hits home really hard when its someone near my age.
A lot of times I try to ignore the fact that I have a progressive, ultimately, fatal disease. I try to live my life everyday as I used to before my diagnosis. I put on a smile and carry on. And honestly, I AM truly happy. My smiles are not fake. However there are times that I just want to cry. Over the silliest things, that I used to take for granted. When I see people hiking, running, doing CrossFit, pregnant women, people playing basketball, and eating a huge cheesy, greasy pizza. Or when see a set of stairs and I start to panic while looking around for an elevator or ramp. Then I get anxious wondering if people are going to think I’m lazy because I’m not taking the stairs. I look healthy, I should be able to take the stairs, right? Sometimes is the simple day-to-day things that bother me, and I won’t lie, I have cried over them. Doing laundry, cleaning, playing with my kids. These things exhaust me at times. And I can feel my heart overworking. This isn’t fair. But it is what I have been dealt and I am going to take this challenge as I have everything else in my life. I am going to overcome it. This doesn’t mean I will be cured, there is no cure. But I will overcome. I will not let this disease rule my life.
I am not my disease. I am not Pulmonary Hypertension. I am me.

Food for Thought

I am not one to speak on politics or bash anyone’s opinions/posts/comments. However it’s been weighing on my heart to say something.

This presidential election has brought out the worst in so many people that I know. To post things like “go tell your LGBT, black, Hispanic, and women friends that you don’t care about them” infuriates me. Who are you to tell anyone who they do and do not care about? I have several gay friends and family members whom I love deeply. And guess what? They voted for Trump. My best friend is African American. And guess what? She knows I love her and care for her more than life itself. She voted for Hilary. And guess what? WE ARE STILL FRIENDS. We have discussed our views in a friendly way. And we agree to disagree. End of story. I would never judge or bully someone else because of their political preferences. 

We live in a nation where we have the right to vote and elect a president – as a nation. We are the UNITED States of America. While I do understand people being upset because their candidate did not win, it does not, in any way, give anyone a reason to ridicule someone else because their views are different. Imagine if we all had the exact same opinions. How boring would life be? Its like any relationship. Arguing is inevitable and necessary AND healthy. However hostile, violent, and condescending behavior is detrimental. And in most cases, does the opposite of what you’re trying to accomplish. 

We live in a wonderful nation that allows us the right to have differing views. We also live in a nation that has lost its way. And the behavior that I’ve seen in the past two days is doing the exact opposite of what Hilary supports were preaching – unity, love all, and to rebuild our nation. 

I hope that everyone can take a moment to look around them and see how blessed they are to live in a free country. 

We have elected a president and he will be our president. He will be my president. And he will be YOUR president. 
Sincerely,

An LGBT loving, minority loving, Republican woman

Raising Awareness – DENIED

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November is known as Pulmonary Hypertension Awareness Month. A purple colored (periwinkle) ribbon symbolizes PH.   I submitted the following email to my local County Commissioners hoping to get a proclamation to declare November as “Pulmonary Hypertension Awareness Month”.

Good Afternoon,

My name is Danielle Taylor and I have Pulmonary Hypertension. I am writing in hopes that you will declare November as “Pulmonary Hypertension Awareness Month.”

 

Pulmonary Hypertension (PH) is a rare, and often misdiagnosed, chronic, life-threatening lung disease which cause the heart to fail. Without treatment, Pulmonary Hypertension patients live 2.8 years after diagnosis. 

 

There is currently no cure for PH. I am part of a non-profit organization called the Pulmonary Hypertension Association (PHA) which is seeking treatment, a cure, and awareness for this llife-threatening disease. 

 

If you would, please help me spread awareness and support throughout our community and proclaim November as “Pulmonary Hypertension Month”. 

 

Very Respectfully,

Danielle Taylor

New Braunfels, TX 

(830) 377-9962

My request was denied due to the fact that there is not a local organization in Comal County. I am dumbfounded. It is a rare disease, of course there isn’t a Comal County PH club. There are only 4 chapters in the US: Northeast, California, Midwest, and Lone Star(based out of The Woodlands). If anyone has any advice on how to get this declared, please email me! To learn how you can raise awareness, please visit http://www.phassociation.org/Awareness. Also, please share this photo in the month of November and use the hashtag #heart2curePH

 

 

 

Nighty Night

fullsizerender-11I completed my second sleep study last night. I slept so awful. Tossing and turning, getting tangled in cords. And that mask…ughhhh. Turns out, I need it! I have sleep apnea. Sigh. Add it to the list. So I should be getting a CPAP machine in the next few weeks. Some positives: I hopefully will not be tired all the time anymore! AND…this could help my pulmonary hypertension!! According the PHA website, a CPAP machine can improve cardiac function. I’ll keep everyone posted with my progress!!

 

How is one supposed to sleep like this?? Shall this be my Halloween costume this year??

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Overly Extroverted 

I am a total introvert. For anyone to call me otherwise, they must not really know me. When I start to notice myself doing the following things, that’s when I know that I’ve extended my stay in the land of extroverts. 

1/ When you begin to question why this person / people are all up in your space. Like, GET OUT. If you didn’t know you had a bubble, you are fully aware of it now. Adios bae. Or whatever the cool kids are saying these days. 

2/ The bathroom is your only refuge. You find yourself asking “God, if I stay in here long enough, will all of the people go away?”

3/ You begin to just stay silent because you can no longer speak without extreme effort

4/ Constantly checking your phone for an emergency. You would never wish an emergency on anyone but if one had to happen, please Lord, let it happen now. Help me escape this forced conversation.

5/ The final sign: all you can think about is WINE. Give me a bottle and silence for the next 2 days so I can recover from this torture!

Best Week Ever!

lungs

I had my right heart cath follow up appointment FINALLY. I am extremely happy to report that my doctors initial fear that the disease is progressing – is WRONG! Unfortunately my right heart is still severely enlarged but it hasn’t gotten worse. My pulmonary pressures are an average of 48. They were 78 when I was diagnosed last year. That is great! (Normal pressures should be below 24 I believe). I will not be starting any new treatment, thank God. There are 3 classes of medications for PH patients and I am on a class 1 and class 2. Class 3 are much more scary medications. I was terrified that they were going to put me on a class 3, but I am in the clear 🙂 I can’t even describe how happy I am!! I also walked 595 meters during my 6 minute walk test. Best in the clinic, or so they tell me. I decided to get super serious about my walk test and I brought tennis shoes and my earbuds so I could jam out to Shakira and it helped! I am so thankful for all thoughts and prayers from everyone.

The next best news – as most of you know, I will leaving my position as property manager and will be taking on a much less stressful position at my company. I have been patiently waiting (sort of…lol) for my boss (also one of my bffs) to find my replacement. I know, I know, how can anyone replace ME? hahaha. #irreplaceable. Alas, they succeeded and officially hired a new Danielle and she starts on Tuesday! I am so freaking excited!! I am so blessed to work for such an awesome company that basically created a job to fit my needs. This has been the best week EVER.

Missing Missouri

I miss Missouri. Everything about it.  There is nothing like going home. Especially my tiny home town. Going to the antique store and running into your childhood friend’s mom. Or going to your cousin’s wedding and its like you never left for all of these years. Watching my brother and my dad play catch in the back yard like we are kids again. Watching the Royals World Series Parade from last year, because my dad is still obsessed 🙂 Going to the grocery store, gas station, or literally any where and half of the people are wearing Chiefs or Royals gear. I feel such a sense of completeness that I can’t explain. This trip, I got to watch my little cousin play flag football on the very football field that my dad played on in high school.

Times like these make wish I could freeze frame time.

 

 

The waiting game

Here we go again. Waiting for my second right heart cath to determine if my medication has slowed down the progression of this terrifying disease they call pulmonary hypertension

As I’m sitting here staring at this empty room, I get a sweet text from a good friend with the bible verse Isaiah 41:10 

So do not fear, for I am with you;   do not be dismayed, for I am your God.

I will strengthen you and help you;

    I will uphold you with my righteous right hand.

Always a beautiful reminder to know that God is with us through it all.

#pulmonaryhypertension #PH #PHaware