Friday, May 31, 2013
Today was a happy day!
I had an echo in the morning and was very proud of my heart. It remained very calm. Go heart! (I'm not sure what having a calm heart means with regard to an echo that's testing pulmonary pressure, but it felt good to have it be so relaxed.) I won't have results till next week. Ahhh! The waiting game begins...
The crazy thing is that the person who performs the echo is seeing everything, and can basically tell you what's going on, but no matter how many questions you sneak his way, he must follow the protocol, which is of course to wait till the echo has been reviewed and then sent to the doctor who then reviews it again. It has to go through a series of so many people before it actually reaches ME, yet there I am right next to the person who's seeing it all first hand. Crazy!
I then had the great fortune of shopping at Whole Foods with world-renowned health expert Dr. Robert Young. A wonderful moment it was!
We then realized that Steve Martin was running out of oxygen, so it was time to rush home and change my tank! Fortunately, we got there right on time. We made the switch and Steve was back in action!
Now it's time for more green juice...
I hope you had a wonderful day.
See you at the next :-)
Sunday, May 26, 2013
Great day today! Took a long walk along the East river with Hunter, Steve Martin and our two little doggies, Parker and Priscilla.
I took a pause when we reached the end of our walk and took my oxygen off and breathed natural air for a few minutes. It felt sooo good! More of that please :-)
My heart seems to be more at rest which is such a nice feeling! For so long it's been pounding away. It's felt like a salsa band was performing right behind my chest wall. It seems that they have now found themselves a new performance location. I had forgotten what a calm body feels like!!! When my heart starts to have a moment and a bit of worry kicks in, I lay on my right side and it calms down again.
I'm going for another echocardiogram on Friday and I'm hoping and praying that it shows that I've improved! I feel that I have. Funny how the things I used to want are not the things I want now. Winning a lifetime supply of Grammys doesn't even compare to the joy I would feel from having test results indicating an improved echo! Who would have thought!!! :-)
Hope you are having a great, happy, meaningful Sunday!
See you at the next,
A wonderful friend sent over the following passage which I wanted to share with you:
For need can blossom into all the compensation it requires. To crave and to have are as like as a thing and its shadow. For when does a berry break upon the tongue as sweetly as when one longs to taste it, and when is the taste refracted into so many hues and savors of ripeness and earth, and when do our senses know any thing so utterly as when we lack it? And here is the foreshadowing - the world will be made whole. For to wish for a hand on one's hair is all but to feel it. So whatever we may lose, very craving gives it back to us again. Though we may dream and hardly know it, longing, like an angel, fosters us, smooths our hair, and brings us wild strawberries.
--Housekeeping by Marilynne Robinson
Thursday, May 23, 2013
Today we visited a nutritionist/doctor in Flemington, New Jersey who was very inspiring and had so much knowledge!
We learned what foods to eliminate from our diet and what foods to add in order to help the immune system heal and help counteract some of the drugs I'm taking. I say "we" because Hunter has decided to follow the same food regimen that I'm on.
I really enjoyed our little road trip. Hunter packed us a lunch and we ate in the car while watching the rain fall and listening to the thunder. I'm a HUGE rain and thunder fan so the view was perfect. It was Hunter, Myself and Steve Martin- I decided my tank should be named Steve Martin- There's absolutely no reason why, it just feels like the right name for him.
We're home now and Hunter is preparing us a raw vegetable smoothy! This will be my first time :-)
We're switching between raw veggie juices and smoothies because the body apparently absorbs each one differently and both are essential to health. (The juice goes right into the blood stream whereas the smoothie preserves the fiber content and allows for slower digestion.)
Hunter just handed me my drink and now I'm drinking it! ………………… (the dots were me drinking it) Tastes like whipped spinach! (picture below) I would drink anything to get better so whipped spinach works for me! :-)
Hope you had a great day! See you at the next!
Chloe Whipped Spinach!!!
Tuesday, May 21, 2013
We just went for a very inspiring, surprisingly long walk along the Hudson River. So damn pretty! I had no idea how beautiful NY could be. It was the five of us (Hunter, Myself, our 2 little doggies and my Tank, for whom I'm trying to come up with a name. If you have any suggestions please leave them below. I think it's a boy :-)
The irony is that the tank is so damn heavy to carry around that you actually need the oxygen from the tank in order to carry the tank! Thank you Hunter for carrying my tank!
Last night was tricky. My mind was doing some crazy things, trying to pull me into negative zone. I get up quite a bit in the middle of the night and I find that during those those moments it is most difficult to counteract negative zone. You suddenly start to focus on symptoms rather than the goal. It's almost like your mind has been sleeping and just sort of gives in. I had to quickly break negative zone!
With help from Hunter and a wonderful walk, negative zone has left the building.
I hope you have a wonderful, meaningful day! See you at the next.
Sunday, May 19, 2013
This whole experience has made me feel like I am just beginning to live! It feels like I have been sleeping until now. It's a truly amazing feeling! Everything looks and feels completely different.
All of the things I thought mattered, don't and all of the things I didn't realize the value of, I now do! I am so grateful to be alive and to be surrounded by amazing and wonderful people!
I fed the doggies this afternoon with more energy then I've had in a while. Yippie!
I was walking around with my oxygen tank laughing at myself because it looks like I'm either constantly mowing a lawn of vacuuming. It's a strange contraption that you can either push or pull. When you push it, it really does look like your vacuuming the floor.
Sometimes I forget I'm connected to it so I walk away from the tank and then get pulled back full force by the plastic part on my face! It's a funny site!
I'm about to go to church to have a one on one conversation with God. I've never been religious or practiced any particular religion, but I do believe in God. Off I go.
I hope you have a wonderful, meaningful day!!!
See you at the next.
Saturday, May 18, 2013
I am so appreciative of all of your incredibly thoughtful and encouraging words! Thank you all so much!!
Today was tricky. I've gone back and forth all day from very hopelful to not so hopeful. It's crazy what the mind does and where it takes you. It feels like our entire lives are happening in our heads! If only we could tell our mind what to think on a continuous basis without letting it stray!
Yesterday's news has knocked me over the head with a bat so I've been mentally exhausted all day, which has made me physically exhausted.
My husband (whom I call Hunter) has suggested that I ring a bell every time my mind goes to a dark place. I've been ringing that damn bell all day! I look like a very strange person in the street now! I carry around an oxygen tank (which my friend CarmenLeah helped me design) and now a bell that I ring randomly when my thoughts go to a not happy place. It's a bit of a funny sight.
Ringing the bell has actually been sort of helpful. Though temporarily, it does kind of break my thought process.
My parents came over for a visit. We shared laughter, tears, and a bucket of cherries. Thank God for my parents! There could be no two more loving, supportive, caring and understanding parents. And thank God for Hunter, who in addition to caring for me in every way possible, has become my mental bodyguard. He is helping me shield my mind from all the voices that come in to disrupt my hope.
I walk around with Pandora playing on my iPhone all day. One of the most beautiful songs came on today by an artist I recently discovered. Her name is Hiromi and the song is titled "Green Tea Farm." So inspiring! That was definitely a happy moment during which I did not have to ring my bell!!! :-)
My mission today has been and continues to be to keep my mind in a hopeful, inspired and peaceful place.
I'm about to go on my second walk of the day and I'm going to do my best to appreciate every moment of it! Maybe I'll even leave my bell at home for this one :-)
Thank you for reading this and for following me on this journey! See you at the next.
Introducing my Tank and my Bell!
Friday, May 17, 2013
The news today was shocking. After struggling with health problems for the past 5 years, which I will get into more detail about, this morning, my family, husband and I met with a lung transplant doctor at New York Presbyterian hospital.
In my doctor's minds, my illness (a combination of severe Pulmonary Hypertension, the possibility of Pulmonary Veno Occlusive Disease, which is an extremely rare lung disease, and an auto immune disease) is a life threatening one, and therefore drastic measures must be taken. After hearing about the risks and life expectancy of a double lung transplant patient, (1-5 years) I became scared shitless; quietly scared shitless since I'm not one to express my emotions in public, but truly scared shitless.
There are cases where people have lived 15-20 years after a transplant, but the doctors seem to not talk about those people enough. I learned about the medication that has to be taken for the rest of one's life prior to a transplant and became even more scared shitless, as I am on one of the meds now and it is causing nausea, so I've had to temporarily stop it. After a transplant, stopping medication is not an option if one wants to remain alive. I also learned about weekly bronchoscopies, blood work and check ups that have to take place post transplant. Basically, all of the info we got today has made it feel like I've been sucked into a nightmare and I can't wake up.
All of a sudden, all thought of a future disappeared and instead of being sad I became numb.
I've been home now all day thinking about life and what it really means and I'm realizing more and more that life is only now. It is this moment. Nothing else is promised to us.
I am not one to discuss my emotions and I am very private about my life, but I feel compelled to write about my experience. Hopefully it can help someone out there who may be going through a difficult time. For my own personal benefit, it simply feels good to get out what's going on within.
My intention is to heal my body with the help of my wonderful husband (without whom I probably would have jumped off a cliff by now), my own strength, raw vegetable juices, my oxygen tanks (which I now wear 24/7) time with family, prayer, and laughter!!! Lots and lots of laughter!!!
Despite what the doctors say, I am determined to do all that is in my power to heal myself.
Thank you for reading this. See you at the next.