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.

Month: January 2017

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.