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Tuesday, November 12, 2013

The Huffington Post

 It was so wonderful to be back on stage!!! Amen :-)

I wanted to share an article about me that just came out in The Huffington Post!

Click HERE to read the article


Friday, October 11, 2013

Little Lies

Hi Wonderful People!

I just released "Little Lies." I hope you enjoy it :-)

This will be one of the songs I will be performing at the 02 Breathe Gala on Nov 7th, in NYC. Hope to see you there!

Click here for the 02 Breathe Gala.

"Little Lies" written by Chloe Temtchine
Produced and mixed by Casey Skinner
Mastered by Mike Rogers
Video by Ivan Raveane

Below is a press release that was written about the show:

'Cosmopolitan' recently published an article that offered a peek inside the roller-coaster mind of a 30-year old female. It chronicled the feelings, rational or not, associated with this milestone age.  The flurry of questions that pinballed in her thoughts included:

    - Do I officially fall into the category of cougar?  Do college kids think I'm old?  Is it creepy if I think they're hot?

    - Will I never be carded again, and if I am, will it be a "courtesy card," like when they card my mom at the liquor store to make her feel better about herself?  She's 60.

    However, for YouTube sensation and the 2011 AVON National and International Songwriting Competition Winner, singer/songwriter Chloe Temtchine, age 30, one question rings loudest in her thoughts: Will I live?

    In February 2013, Ms. Temtchine's album, produced by American Grammy nominee, Greg Camp, was nearing completion, and its national and international promotional tour was imminent, when inexplicably Ms. Temtchine’s personal and professional life were forever altered.  She was rushed to the emergency room due to congestive right-heart failure, the result of a rare life-threatening pulmonary disease, which had quietly and viciously attacked her, leaving her breathless and almost lifeless.

    Pulmonary Veno-Occlusive Disease (PVOD) is a clinicopathologic syndrome that accounts for a small number of cases of pulmonary hypertension.  PVOD is so rare that the largest clinical study in the world consists of 11 cases, 9 of whom died before the year-long study was concluded.

    Although the term “pulmonary veno-occlusive disease” was first used in the 1960’s, the first well-documented case of PVOD was described in 1934 by Dr. Julius Höra of the University of Munich.  It involved a previously healthy 48-year old baker, who died after a year of being diagnosed; he had developed progressive edema, dyspnea, and cyanosis.  Regretfully, the disease has been historically underdiagnosed, possibly because of lack of awareness by clinicians.

    In spite of the grim prognosis, Ms. Temtchine has elected to replace the sirens of death with the beautiful and life-inspiring sounds of music.

    On November 7, 2013, mere months since her diagnosis, Ms. Temtchine, along with her portable oxygen tank, which she affectionately refers to as Steve Martin, will valiantly breathe life back into her music with an intimate live performance at the Pulmonary Hypertension Association O2 breathe Gala, an elegant event honoring the legacy of Dr. Robyn Barst and raising awareness in an effort to find a cure.
    What’s more, Ms. Temtchine, a passionate advocate of the Pulmonary Hypertension Research and Diagnosis Act of 2013, has been invited to attend a luncheon with Congress on November 12th.  Members of Congress have requested that Ms. Temtchine perform.  They are confident that her remarkable voice and powerful music, which she wrote, recorded, and performs, while linked to an oxygen tank, will send the audience out with their hearts stirred, inspired to fight PH.

    For further information and interviews with Chloe Temtchine, please contact Michael Rhodes 347-688-4511.

Thursday, September 26, 2013

The Eiffel Tower

I had such a great time in Maine hanging out with friends and family!

One of the days we were there, Steve Martin decided to go out on his own (see pictures below.) I think he just needed a moment.

From Maine, we ventured to Brigham and Women's Hospital, in Boston, for a visit with the Great Dr. Landzberg and his team. We had a fantastic visit which left me both comforted and much more informed.

Dr. Landzberg made us aware of a few findings on my CT scans that are "not classic of PVOD." This, of course, doesn't confirm that I don't have PVOD, but at least it's a step in the right direction. The only way to confirm it is with an open lung biopsy, which I'm not well enough to undergo at this time. My cousin decided that PVOD stands for "Piss off you Very Odd Disease." I think she's right on with that one! :-)

Yesterday morning I had to have a tube with some sort of camera inserted into my stomach through my nose (what a lovely image it was.) It went in my nose, down my throat and into my stomach and I had to leave it in for 24 hours! Ahhh! The tube came out this morning! What joy! I've never appreciated not having a tube down my throat as much as I do now.

Its purpose is to monitor reflux and any sort of action that goes on in the digestive system. (This test is part of the transplant evaluation.) I thought I was done but there was one more. What a welcome back to NY!!! I'm ready to go back to Maine. The good news is that, as long as I continue to feel well enough,  I can take a break from doctors and focus on music. Amen!!! Looking forward to sharing both my album and all the new music I've written with all of you.

More to come :-)


Steve Martin thought he spotted the Eiffel Tower.

 Then he stopped for some Seafood
 Then he took a moment to enjoy the view
 Then he got hungry and stopped for brunch
 Then he decided to watch the sun as it set
Then he decided to make an evening of it and went to listen to some Jazz
Other Happy Moments:

Saturday, September 7, 2013

Back On Stage!!!

I have officially completed all of the testing for the transplant evaluation. The next step is for the doctors to review my case and test results to see whether or not I qualify for the surgery. At that point I will have to make a decision. Ahhh!!!

In the meantime, Hunter and I are heading to Boston to visit a doctor for a second opinion and then heading to Maine for a mini vacation so that we can take a breather from all of the craziness.

We're also communicating with doctors in Japan, Hong Kong, Singapore and at Vanderbilt University who have specifically dealt with PVOD. Our goal is to find out as much as possible about this very rare lung disease in the hopes that something will lead us to believe that I don't have it. And if I do have it, then our hope it to gather as much information as possible.

In the midst of all the insanity, I've decided that it's time to perform again!!! Thank you, Annette Insdorf for the inspiration!

This time, I shall be performing with my sidekick, Steve Martin. He so enjoyed getting all dressed up for the opening of Lovelace, (he wore his favorite tie) so he has asked that I dress him up again for the show. I will, of course, honor his request. :-)

I'm going to be playing on November 7th, at the Gala for Pulmonary Hypertension, celebrating the life of Dr. Robyn Barst. I'm so looking forward to being back on stage and to sharing all the new music I've been writing. This experience, scary as it may be, has been a HUGE musical inspiration!

I'll send out a newsletter with details about the show soon. If you're not signed up for my newsletter and would like to be, please leave your email here:

Thank you again for being with me on my journey! More to come...


Thursday, August 29, 2013

Thank You!!!

Today I just want to say THANK YOU SO MUCH to all of you wonderful people for all of your emails, notes, messages, and texts! It means so much to me to have you with me on this journey! From the bottom of my currently enlarged heart, thank you! :-)

I'll report in soon!


Tuesday, August 27, 2013

Holy Crap!!!

Such a scary time! Holy crap!!

I'm in the midst of being evaluated for a lung transplant. I've been in and out of the hospital doing tests for the past month, meeting with all sorts of doctors who are checking on the status of pretty much every organ in my body to see if I'm essentially "healthy" enough to go through such a complicated and risky surgery.

After meeting with the doctor today I am utterly confused and lost.

I was happy to report the news that I am feeling much better and stronger, that my lung pain, body aches, and cough are gone and that I am a bit less short of breath. Every time I know I'm about to visit a doctor, I build an invisible protective shield around myself and do all that I can to preserve my positive mindset, being that what they say can very quickly drain anyone of all hope. I realize that they're trying to help, and am grateful for that, but somehow I always leave their office with a strong urge to jump off the Empire State Building!!!

Today was no different. I went in there not confused and left there completely lost. My invisible protective shield didn't hold up very well.

The idea is that, although they cannot confirm the diagnosis, the doctors seem to all believe that I have a very rare and terminal lung condition called PVOD (Pulmonary Veno Occlusive Disease). In order to confirm it, I would need to do an open lung biopsy, a procedure which I'm currently not healthy enough to undergo. As a result of this, they feel that my best bet for prolonging my life is to undergo a lung transplant. The issue there, is that the life expectancy is not very promising, and there are millions of other problems that could arise as a result.

My argument was that since I feel so much better, why would I rush into a procedure that is so unsafe and potentially life threatening in itself. Their thought is that my condition will not improve, and will eventually lead to heart failure. If in fact it is PVOD,  "eventually" would come sooner than later. They believe that since I am stronger and feeling better, that this would be a perfect time to undergo such a tough surgery. My chances for survival would be greater.

I'm sitting here not knowing what emotion to have. This whole experience feels so incredibly surreal. I kind of feel like I should just rip off my oxygen, go have glass of wine (really a bottle) then move to Hawaii and pretend that this was all just a terrible dream.

I am going to have to make a decision very soon as to how I'd like to proceed.

Although the doctors wouldn't be with me on this theory, a large part of me believes that somehow my body is healing itself.  As a result, it feels counter intuitive to go through with surgery at this point. The other part of me is scarred shitless that if I don't go through the surgery I may not be around for very long. Right now, the emotion that is in the lead, is the one that feels like I'm healing and therefor should hold off on being listed for a transplant.

What a crazy time! I'm going to think and think and think and feel and feel and feel and let my body help me decide what to do. In the mean time I shall sip on my green juices and pray!!!

Thank you so much for reading this and for being with me on this journey!


Friday, August 16, 2013

A Poem

I love this poem! :-)

"When you get what you want in your struggle for self
And the world makes you king for a day,
Just go to a mirror and look at yourself
And see what that man has to say.
For it isn't your father or mother or wife
Whose judgement upon you must pass;
The fellow whose verdict counts most in your life
Is the one staring back from the glass.
Some people may think you a straight-shootin' chum
And call you a wonderful guy,
But the man in the glass says you're only a bum
If you can't look him straight in the eye.
He's the fellow to please, never mind all the rest,
For he's with you clear up to the end,
And you've passed your most dangerous, difficult test
If the man in the glass is your friend.
You may fool the whole world down the pathway of life
And get pats on the back as you pass,
But your final reward will be heartaches and tears
If you've cheated the man in the glass."

Monday, August 5, 2013

A Cinderella Moment

We had a great evening at the premiere of "Lovelace!" (Hunter is one of the producers of the film.)
I hadn't been to an 'event' since all of the craziness took place, so it was a moment!!!

I decided that since I was going to get all done up, Steve Martin should also look the part. He decided to wear a tie, which I thought was a perfect choice! (see picture below)

Hunter, Steve M. and I proudly walked down the red carpet. There were paparazzi everywhere since all the actors were there (Amanda Seyfried, Peter Sarsgaard, Hank Azaria, Chris Noth, Sharon Stone…) and I thought to myself: "Self, this is crazy that you're here and that you're carrying around an oxygen tank that's wearing a tie nonetheless! How did this happen???!!"

The amazing thing is that people were so incredibly nice and accommodating as a result. I didn't have to stand in any lines, I was escorted to my own elevator, so that I didn't have to use the stairs or maneuver through crowds…At the after party, I was offered a seat in the "reserved section" by Chris Noth (Mr Big). It was like I was carrying around a VIP pass the whole evening! Thank you, Steve Martin!!!

We ran into friends at the after party and had a great time!  I kept glancing down at my tank to make sure I had enough air to get me through! It was a Cinderella moment :-) My tank magically lasted the whole evening! 

Thanks for reading this! I hope you have a great day!


Tuesday, July 23, 2013

Ta da da dum...

Hi Wonderful People,

Today we had to do what I've been trying to avoid doing… Ta da da dum...

We had to schedule 3 days of testing and 3 days of visiting with doctors, therapists and social workers at Presbyterian Hospital. All of these tests are to determine whether or not I quality for a "Bob." Crazy that I have to go through psychological testing!  Even though I'm better (AMEN) my cardiologist still wants me to go through the process and be listed for a Bob.

I'm going to do my best to shift this yukky experience form being a scary one to being, in Hunter's words: "A series of metrics that can only serve us. " But damn those evil voices are loud as a mother%^&$^* today! Anything related to Bob is bothersome to me. Damn Bob!

I do have the decision to not go through with any of it, but of course that's scary too! Ahhh! Scary on the left and scary on the right. I think it makes sense to go through with all the testing (which is not nearly as bothersome to me as interacting with the doctors) and continue on my journey of healing without ever needing a Bob.

My cocktail of meds,  green juices, a healthy diet and exercise seems to be doing the trick!

I realize that  a situation is not really about the situation but about how we choose to see the situation. Someone said this a lot better than I just said this.

So, I'm going to power through and see the situation as one to be grateful for. These tests can be an opportunity for me to have a better understanding of my current health situation and as Hunter says, to have a set of metrics that we can refer to. I'm going to listen to the doctors and rather than cringe, I'm going to pretend that I'm on stage and visualize them all naked he he he he just kidding. But seriously, I'm going to let their words also be metrics and do my best not to take them to heart (literally.)

In music news, I just wrote and released a new song titled "The Meaning of Time." If you'd like to watch/listen, please click here:

Also, there is now a subscribe area, on the right, in case you'd like to be notified when I post a new blog.

Thank you for being  part of my world!

Wishing you a great day! :-)


Wednesday, July 17, 2013

New Song!!!

Recorded a new song today! Yay!!

I was wondering how I was going to be able to record with the oxygen because it's so loud!!! Every time I breathe in, it sounds like a huge gust of wind, and amplified by a mic, it sounds like a tornado is taking over the earth!!!

So my first attempt consisted of taking off the oxygen and pretending that, while doing vocals, I just wouldn't need it. I decided not to check my 02 saturation and just make believe it was OK. I finished a few vocals and thought: "What the hell, let me just check it." It was definitely low so I put it back on :-( Steve Martin is clearly not ready to let me go just yet.

How was I going to do this! Ahhh!! Steve Martin is sooo loud!

I was a bit discouraged for about 6 minutes, when I thought: "Hmmm… what if I leave on the cannula and breathe mostly through my mouth, occasionally taking breaths through my nose. It worked!!!

I took one breath through my nose for every three I took through my mouth and I was able to get a vocal that was clean. It didn't sound like the end of the world was coming! It took longer to record, but it worked! This is the kind of thing I never thought I would be so excited about!

I look forward to sharing the new song with you soon!

Happy Day!!! :-)


Saturday, July 13, 2013

Road Trip!

We just came back from Rhode Island (see driver below) where we were for 4 days visiting Hunter's family and celebrating life!  We decided to take a little celebratory road trip since my most recent echo shows that I'm continuing to improve. AMEN!!!

I'm not a huge shopper but I do like the mall in Providence, RI. So, on Friday, we took a little mall trip. This was my first real shopping moment with Steve Martin. It was really my first "outing" since being in the CCU.  Shopping with Steve M. was quite something.
He definitely doesn't leave my side :-)

The craziness is that I have to get everything done b4 he runs out of 02. I've got a good few hours before he needs to be changed. It all worked itself out!

We're gradually increasing my meds, and are religious about our green juices! I'm feeling better and stronger, which I'm so happy about. Music is starting to creep up and say: "Hey, what about me? Did you forget about me?" This of course is a very hopeful sign :-)

I hope you are having a wonderful day! See you at the next :-)


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


Friday, May 31, 2013

A Happy Day

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

Echo beats the Grammys

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

Whipped Spinach!!!

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

So Damn Pretty!

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

A Wonderful, Meaningful Day!!!

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

Ringing My Bell

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

Shocking News

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.