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: October 2016

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!

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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.