I know I’ve been quiet lately. For a few weeks I haven’t been feeling so good and so I haven’t written here.

As I mentioned here before, I have made a lot of progress over the past several months.  On my orthomolecular vitamin plan I have been able to gain weight, my energy has increased, and I was feeling more hopeful than ever.  So much so that I really pushed myself to be out and about –maybe too much.  Each day I wake up and I only think of that day.  I take one day at a time often refusing the urge to think about the future.  It’s just too overwhelming.

With my recent “funk” and all of the aches, pains and stomach problems that I’ve been dealing with I went to see my doctor.  And while the doctor also sees the positive improvements, sitting there for three hours and talking about the big picture was really overwhelming for me.  I haven’t been “ok” since that appointment last week and it’s because I am feeling scared.  When I sat with the doctor I had to think of the future, and all of the things that are hanging in the air… my heart, my leaking valve, the possibility of open heart surgery (I’ve managed to keep that conversation at bay for a long time now), my heart transplant doctor that still says it’s inevitable.  I left there with my head spinning and I haven’t been able to calm down since.

The reality is that I still have a long way to go.  Sure, I am dedicated each day to taking my 120 pills (vitamins) and medication -and eating right, but my heart is still the same and has not yet shown the improvements I am hoping to see.  I feel lost at the moment, scared and lost.  It doesn’t help that I am tired and achy because that just makes things worse.  I just have to get through this funk and keep positive but it made me realize that I have to really take my healing game up a notch.

For these past few months when I was feeling well it brought me a new sense of freedom.  I wanted to do things that would bring me into the world and out of my healing bubble. I was excited to try new things and maybe new projects but my recent health issues slammed me in the face with reality.. that I still very much have to make healing my priority.  Sometimes I feel lonely.  It’s been four years of healing full-time and my world has gotten a little smaller because of it.  I stay at home alone most days because my routine is so important and difficult to accomplish if I’m out and about.  My progress is amazing but now is the time to ride that wave.  There is a lot to be done still.

I’m a little sad today so I’m just letting myself “be”.  Every so often it all HITS ME! My heart failure, the possibilities, how fragile my body is.  So, I am just sitting here in my funk and hopefully it will pass. 

I still have a great announcement coming but I lost some momentum with my recent health issues.  I am excited to talk about all of the positive things to come, but for now I am crawling under the covers and giving my heart and body the rest that they need.  Tomorrow is a new day.

xxL

BIG news happening over at SaveLaurensHeart!

Announcement to come in the next two weeks.

Last Sunday the NY Times published an article that really disturbed me:

http://www.nytimes.com/2012/01/22/nyregion/chefs-butlers-and-marble-baths-not-your-average-hospital-room.html?_r=3

I am in the process of establishing my non-profit organization for Patient Advocacy and this is why… I want people to know that they are worth more than this!  A VIP patient? There should be no such concept! Every single patient should be treated equal.

I remember watching Bill Maher a while back and he was interviewing Chris Rock who was telling a story about the healthcare he was exposed to with his sick mother before he became famous while he was still “poor”,and many years later with his father when he was a rich celebrity.  Chris Rock said that his mother’s condition was not life or death, he felt that she could’ve been saved but they weren’t offered the treatment she needed because of their financial status and his mom eventually died from complications of her condition.  Years later his father was extremely ill and close to death, much sicker than Rock’s mom had been, but because of his celebrity status, everything was done to save his father.  They were offered things you couldn’t imagine, and his dad lived.  Chris Rock said that if the general public knew of this huge difference in the way the rich and the poor are treated in hospitals there would be “riots in the streets”.  So I ask, where are these riots? This article is evidence of this disparity. This is happening! Where is the anger?  Where is everyone when it comes time to advocate for ourselves, to demand better?  We must demand better!

The money and effort put into making these VIP areas should instead be used to renovate, update, and innovate the entire hospital floor by floor (beginning with the unacceptable state of the Emergency Rooms at Columbia Presb).  We, the people, need to demand this of our doctors and institutions.  You cannot be afraid to ask for things!  Stand up for yourself!  We have the power of the Internet to share our experiences and we should all start journaling our hospital and doctor visits; how we are treated, the state of the hospitals, etc.  Doctors, nurses, and staff should be held accountable for making you as comfortable as possible.  The boards of all hospitals should get reports from “real” patients about their experiences.

I suggest you print out this article and keep it in your bag, and if you should ever find yourself hospitalized or in an ER, hand this to your nurse and doctor and whoever else you can find and request that you be sent to one of these rooms… for free.

(hit play)

sick, scared, and skinny in 2008:

(above) at Cleveland Clinic to get my pacemaker/defibrillator implanted

14 hospitalizations in 2008 alone:Christmas 2010, feeling very sick. Still super skinny.

Documentation of my illness, I would take pictures of really bad days and really good days. Some time during Summer of 2009:

Sick and skinny. But happy.

Some bumps in the road in early 2011…

This too shall pass…

Vitamins vitamins vitamins… (and yoga, and acupuncture, and energy healing, and juicing, and medication, and an elimination diet, and osteopathy, and visualization and prayers, and breakdowns and meltdowns and HOPE, and HEALTHY HEARTS the list goes on)…

Healing

Gain weight for the first time in 4 years:

Progress. Health. Hope. Lots and lots of Hope.

Today, December 2011:

Proud.

Thank you for believing in me.

I still have a long road ahead of me but as a new year approaches I wanted to show you the progress we’ve made together.  It’s been four years of hard work.  I could have never gotten here without the love and support that I’ve received from you. I am blessed.

A lot of my supporters out there have been reaching out to me lately to ask why I haven’t written in some time. Well here I am! It’s true, my writing has definitely slowed down, and it’s because the past ten months have been intense.  So much so that I promised myself I would be utterly dedicated, that I would throw myself into this vitamin therapy I am on.  I adopted this “put your head down and don’t look up until you’re better” drive.  It’s been a little like a hibernation, I’m so dedicated that I don’t know what to say or what to talk about.  Healing is my life.

I’ve actually sat down at my computer at times where I attempt to write, and I don’t feel compelled to share another update like “…took my breakfast dose, feel nauseous…” I suddenly felt like I wanted to keep it all to myself, save every update, every complication… I needed a break from sharing it all.  Plus, I’m not going to lie this is plain hard work and dedication.

But there has also been this focus, this “thing” I have that I don’t want to interrupt by analyzing, studying, or writing about.  At times I wonder how I can even begin to describe what I’m experiencing.  At times words just won’t do it justice.  I’ve been DOING and allowing the vitamins to DO by living in the moment with no reflection later.  I’ve trained myself to live this way so the vitamins do their job.  Each pill is for a specific reason, trained to head to a specific membrane of the heart or to help with the energy production of a cell. It is a constant process, reactions and chemistry happening on deep levels. A daily practice like yoga…  I find myself holding moments of silence for my body after I swallow a dose.  It has developed into deep reverence, awe-inspiring moments, I feel the changes and I feel the presence of greatness, abundance of health, and most importantly, hope.  The beautiful promise of hope.

My vitamin therapy began back in February of this year courtesy of an amazing doctor that I was lucky enough to find (It was destined). To give a general overview, I have a lot of positive things going on. I look healthier, I gained a bunch of weight (25 lbs), something that had been pretty much impossible for the passed four years, and I have a hope, a light in my eyes that had been dampened by the stress and trauma.  I was getting worn out. BUT, here I am, getting better.  I can feel it.  My heart is healing on a molecular level and soon she will show it.  She is getting cared for by my love and by the vitamins that I feed her.  I take my heart medicine, and I use all of the techniques that I’ve gathered from my healers over the years.  I am constantly working on my heart.  I still wait for these changes to debut in an official test, but until then I just listen to my body and convince the doctors who want proof or who want to open me up for surgery… I tell them to please wait.  Please just give me time.

Things are coming along but I still have a long way to go.  Still, I find myself feeling refreshed and ready for another round. This girl will always get back up.  Always. I took a beating this summer, I was down and scared and sad, but here I am back up again thanks to some very special people in my life.  My heart has become my guru and I welcome my lessons and my experiences with love.

*This is for Harriet.  May all the love you have so selflessly given come back to you times a million.  You inspire me to keep getting back up.

I spent hours in a car today driving back home from an appointment with my amazing doctor out of state (it’s a five hour drive back home to NYC from the doc).  It was a long drive, and I switched off with my co-pilot, and here I was in the driver seat, feeling confident and in a good mood because I finally discovered a 90’s grunge/”alternative” rock station on a radio that had only been white noise for two states.  I found myself singing along to familiar songs, songs that made me so happy. They were from a time in my life (14, 15 years old) when I was so filled with joy and possibilities, and so…. youthful.  Certain songs would come on and I would think about my friends, concerts we went to, outfits that I loved to wear and I thought I looked so cool in, JHS with Karen, exploring around the (old-school) Garment District with Cynthia (before Bryant Park was nice), drug dealers on the corner handing off in fed ex boxes that she would drag me away from quickly, guys pushing big racks of clothes across the avenues, lower Broadway (Antique Boutique was my fave) and Washington Square Park and thinking it was the best place on the planet. St. Marks, Fun City (getting my belly pierced with Kate), Chinese Wine (I was obsessed with downtown), blue nail polish, white eyeshadow, sleepovers, block parties (Berni), High School house parties, keg parties, California with Gela when I was 16 (one of the best times of my whole life), summers in Maryland… the list goes on.

And then a few songs came on and hit me deep in a place that I haven’t channeled in a long time.  I was blindsided with grief.  It took me a second to register what was going on…  why did these particular songs made me simultaneously happy and incredibly sad?  I got choked up, I was aching with a despair that flowed through me like I was releasing something.  I quickly realized that I was mourning my childhood.  The last time I could remember being “like everyone else”.

Around the time those songs were popular, when I was 14, 15 years old, that was the last time I remember being a kid.  When I say kid I mean that’s the last time I didn’t have a care in the world. Actually, I was in my own little world and didn’t have to worry about taking medicine or watching what I ate.  I was so innocent in some ways, my body was still mine and it had yet to be ravaged by some unknown illness.  I sang those songs and it’s like my cells remembered, they remembered the joy and freedom that rang through my body before everything changed.  It’s the last time I can remember a time I didn’t have a “thing” hanging over me, pressing me down, holding lead weights on my ankles, suffocating me.  Then I took a moment to acknowledge… truly, deeply, acknowledge the almost 15 years that followed.  The years of pain, fatigue, and agony, and searching for answers. The years of battling the unknown.  Years of illness. Years of anger, of sadness, of confusion.  Years of  resistance. Years of doctors, medicine, tests, procedures, hospitals, needles, tingling fingers toes and feet, body aches that ring in your head like a bomb, heaviness that pushes your body down into bed, begging and yearning for my body to cooperate. Denial. Years of denial.  Years of stomach pain that had me hallucinating. Crying on the floor. Hot water bottles.  Massages, crying, sleepless nights. Forcing to keep up with my friends physically (in my teenage years even my best friends never figured out why I never ever had straightened perfect hair… I was too weak to blow dry my hair and hold a brush), I couldn’t hold my hands above my head for years (good thing I could pull off the “bed head” look).  Years of pushing myself, and then years of my body pushing back.  Years and years and years and years… It hit me yesterday, I have spent half of my life reacting and operating with a mind scrambled by illness.  I’ve been in “terrified mode”, “I don’t give a shit I’ll prove you wrong mode”,  “terrified mode” again, “I can and will get through this mode” and a million trillion gazillion emotions in between.  I swallowed my tears and grabbed the steering wheel tight.  If I started to cry at that point, I don’t think I would’ve stopped.

Don’t get me wrong, I’ve had a LOT of fun in my life.  I look back and am grateful that I always forced myself to do everything even when I didn’t feel well.  But there is a great difference in who I was at 14 / 15 / 16 yrs old and who I became after I heard those words the first time … “Lauren you’re sick”.  You carry around an entirely different mind set after that. Actually, at the time I was diagnosed, there was so little known about Scleroderma and autoimmune stuff that I kept reading and hearing I would be lucky to make it to 40.  You wouldn’t believe what that does to the psyche of a teenager (I was 19 when I first heard that one).

I know it may sound silly like, Lauren… you hadn’t realized your situation or looked back at your life before? And the truth is… never like this.  Tonight was otherworldly. I still can’t process all that I’ve gone through but it creeps up on me just like it did tonight, that sadness that was lying deep in my gut, and it took those songs, that music, to set me free.  My emotions are still revealing themselves to me each day and I feel differently about what I’ve gone through each day.   But lately I’ve gained some more distance, and with that distance comes the courage to feel it, forgive it, and let it go.