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Wednesday, June 19, 2013

Up a Hill

Great day today!

Among all the wonderful moments was the one that just occurred.

About 15 minutes ago, I walked up a hill (with Steve Martin's help) and rather than panting away as I usually do, I was able to carry on a conversation with Hunter. I ended up talking and found myself at the top of the hill without even realizing what was going on. So great!!!

Funny how exciting walking up a random hill in NY has become! Who would have thought :-)

Let's see if I can do it again tomorrow!!! Maybe I'll walk up and sing next time and see what happens...

Going for my next echo in about 2 weeks and soooooo hoping that my pressures have continued to come down drastically. I've been sippin' away at the green juices and smoothies and am definitely feeling better!

I have also been spending some time shooing away the negative thoughts that try to creep in. I was not so successful last night (they crept in damn it!) but I have successfully removed them today. It's crazy that we can tell our mind what to think, yet it still manages to do its own thing and think things we wouldn't choose to think!

Hope you are having a wonderful day!

See you at the next.


Saturday, June 8, 2013

To Never Needing a Bob!!!

Hunter has been trying to avoid bringing it up, since I don't like discussing it,  but I now have to begin making certain decisions. We are meant to start scheduling all the tests that are required by Presbyterian in order to qualify to be on the "transplant" list. I'm putting this word in quotes because I don't like how it sounds. The quotes take away the edge a bit.  In fact,  I think I'll refer to "transplant," as Bob from now on.

So I have to run all of these tests, (which last for 6 days) meet with a bunch of doctors and attend Bob seminars! Crazy! They really try to get you in the mind set. I'm going to have to work extra hard to get out of it!!!

The idea is that my cardiologist wants me to go through the process and be listed for a Bob. If I continue to get better, I can just say no to Bob, but she is adamant about my being listed.

So even though the idea of a Bob is worse to me than the idea of swimming with sharks (I'm insanely scared of sharks,) I shall go through the process with the continued mission of never needing a Bob. I'm going to postpone the process by 6 days so that I can do a repeat echo prior with the goal of having my pressures continue to come way down this month.

Now that I've gotten Bob talk out of the way, I'm happy to say that I feel better overall! Yesterday was my first day in the Gym in a loooooong time! (I've been going to Pulmonary Therapy, but I haven't actually been to a 'gym.') I was accompanied by Hunter and Steve Martin and walked on the treadmill. It felt so great!

Now it's time for green smoothie number one and a quinoa, arugula salad!

I hope you have a wonderful, happy Saturday!!!

See you at the next.

Chloe                                            Made by Hunter :-)

Tuesday, June 4, 2013

Great News!!!

Great news!!! The echo shows that my pulmonary pressures have come down!!! They have gone from 180 to 98. Yay!!!!!!!!!

The nurse that gave me the news reminded me that with a pressure of 98 I'm still considered to have "severe" PH (there's severe, moderate and mild) but she also said that whatever I'm doing is working. So I shall keep doing what I'm doing :-) Severe or not, I'm celebrating any and all good news.

I woke up excited and grateful to be alive!

I've never really been able to sleep with any sort of light creeping in through my window. I also like my room to be dimly lit when I'm making music. Because of this, I've found different ways of blocking the light from getting in. My current way has been to cover my window in foil paper and then tilt it up during the day to get some light, but have the ability to tilt it down when I want darkness.

All of this to say that  I've never been so damn happy to see the sun! Some of my foil paper fell off this morning and massive amounts of sun came in through my window. I think I'm going to leave my foil paper as it is :-)

Cheers to YOU! I'm drinking my morning green juice and I'm wishing you a GREAT day!

See you at the next