December 2011
2 posts
When hope becomes a reality
A lot of my supporters out there have been reaching out to me lately to ask why I haven’t written in some time. 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...
I often wonder about the exact moment a cell goes...
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...
October 2011
1 post
October 16, 2007
Every year on October 16th I celebrate Life. So, this past Sunday was a significant day for my family and I. It was four years ago on this day that I first found out about my heart.
I remember that night like it was yesterday. It is the three to six months that followed that are blurry. After several months of fainting all over Manhattan, numerous visits to my regular doctor where I told him...
August 2011
1 post
My Inspiration: Kris Carr
As I’ve discussed here since, in the Fall of 2007 my world turned upside down and around and around. My heart was failing, I was told it was really bad, and the journey I’ve written about over the four years that would come after hasn’t been an easy one.
However, around the exact time of my diagnosis I found Kris Carr. It was like a gift from the universe. Her documentary “Crazy Sexy Cancer”...
July 2011
1 post
7 tags
Summer Special - SaveLaurensHeart bracelets
Happy Summer! I’ve decided to have a hot SUMMMER SALE on my leather SaveLaurensHeart bracelets. So from now until July 15th, you can get your Beautiful Heart Bracelet for a $25 donation (originally $35) or 4 bracelets for a $100 donation —and give as gifts to your friends! I truly believe these bracelets have the power to heal.
Click Below to purchase 1 bracelet for the Summer...
May 2011
2 posts
SLH
Been slacking with my Tumblr posts. Gonna show some love this week.
Until then, you can catch up here http://savelaurensheart.com/
Pain that transforms you
This body of mine.
At times I’ve chosen to make it my enemy. At times, I’ve rebelled, pissed that it wouldn’t do all the things I wanted it to. Then came the phase where I learned to accept and love. And accept and love. And respect, and then comes some more acceptance.
But nothing, NOTHING prepares me for the times when the chronic pain sets in. I’ve been...
March 2011
3 posts
Desperation creeps in
Day 2 of my hospital admittance (really day 3 considering those lost 23 hours in the Emergency Room but who’s counting), and my mind is starting to turn on me. Desperation is the only word I can use to describe me right now. Desperate to be better, desperate to feel better, desperate to be out of here.
From my past experiences I have a justified fear of being hospitalized. For me,...
6 tags
Support Group (SaveLaurensHeart Style)
I am thrilled to announce something that I am incredibly passionate about.
I am starting a support group!
I have reached this point out of sheer frustration and a longing to connect with others who are living life with a chronic illness at a young age in an unrelenting city.
The past three weeks have been spent in my house, the majority of my day alone and in pain. As each day passed I...
The Man
Brings a smile to my face even in the moments we’ve been most terrified, sitting in hospital beds or doctor’s offices. Makes this fight worth fighting, makes me stare down my limitations, kick them out of the way, and reminds me that one day soon they will all be a distant memory. My strength when I can’t find mine. My legs when I’m too tired to walk. We continue to prove...
February 2011
1 post
Beautiful Heart Bracelets Round 2 →
Hi Everyone. My next batch of bracelets are ready to go! I have 200 brand new beautiful heart bracelets! I could use all the help I can get with my new healing routine so please spread the word?
Thanks so much… Love Lauren
January 2011
1 post
Running In Heels →
I’ve been telling my story here for three years now. This week a shortened version was published in a London online publication called Running In Heels. A friend of mine, Kaiti, writes for them and felt compelled to share my story…
The support that I’ve gotten in return is overwhelming. Thank you from the bottom of my heart for caring, and for taking this journey with me…
November 2010
1 post
October 2010
2 posts
How to live in two worlds?
The past couple of days brought a much needed break from all things health related. I was invited to cover an event for a design blog for which I am a contributor (Yatzer). I packed my bags and set out on a trip to Philadelphia, and I prayed that nothing happened to my heart while I was gone. Sure, I was scared. It was only two weeks ago that I was in the hospital. But I refuse to let...
September 2010
2 posts
My definition of misery
I am on the verge of tears right now because I have to go to the one place that I dread more than anything… the hospital.
My doctors want to admit me because this is the third day that my heart rhythm is abnormal, racing and never breaking out of the atrial flutters. It’s dangerous to stay like this for much longer and to be honest, after three days of this constant racing I am...
August 2010
7 posts
Because I don't know what else to do right now
I’m told that at some point in time we all inevitably have this moment where we sit back and say “is this really my life?” This moment of disbelief could be the result of good things, or bad things, and it may happen in an instant never to be thought of again, or it may inspire someone to completely change their ways. Well, I just had the day-equivalent to one of these moments. What I need...
Red Hots
A sexy red heart from a dear old friend of mine.
This one makes my heart feel fabulous! These healthy heart drawings are helping me so much after the incident from the other night…
Love when I need it the most...
I had a very scary experience last night. Something like this has not happened in quite a while so it caught me completely off guard… I was sitting on my couch after a long day when I felt my heart race. It was thumping super fast. An uncomfortable fluttering feeling in my chest was immediately followed by seeing white spots. And then, completely white. I started to lean forward...
Please vote for me?
Since I am feeling better and better and I’ve made it to the other side of the “survival mode” that I have had to maintain for the past three years, I am excited to use my brain for other things again! YES! I am happy to say that I am writing a lot —and not just about my health. Freelance articles here and there have made me feel confident about myself again. I am looking...
Kiwi Love
HERE is a package of love that I received from New Zealand. I love seeing those “kiwi” stamps! Included in my package this time around? Homemade confetti hearts! Fun fun fun.
A bunch of you have been asking me for updates on my health. To be honest, I started the Healthy Heart Project because I was very close to putting an end to this health journal at the start of summer. ...
Healthy Heart Project
The healthy heart project has blown me away! There has been so many amazing surprises and most importantly, my heart feels healthy and happy with perfect perfect valves! I have hearts all over my apartment. I look at them before I go to sleep at night and when I wake in the morning. I pass them throughout the day, and they always make me smile. Please keep them coming. I haven’t...
"From England With Love"
I have been getting heart LOVE from all around the Globe! The UK, New Zealand, Japan, Wisconsin, Iowa, some from fanily members in Queens, and more… I went to my PM Box recently and was so filled with joy when I came home and tore through the envelopes! It has made a huge difference in my life and this batch came on a day when I was especially down.
So, this week I am posting a...
June 2010
6 posts
Lauren's Healthy Heart Project
A big part of healing my heart involves a bunch of different exercises that I do on the regular. I’ve found the latest one to be a lot of fun and I can actually witness it helping me out, training my thoughts to focus on only one thing: my heart is healthy! My “assignment” was to find an image of a healthy heart, make a bunch of copies, and color the heart every night before bed. This way,...
A way in which everyone can help to heal my heart!
I came up with a new idea and I’m so excited to share…
Here is a simple, fun way that everyone can help me heal my heart. I believe if we all collectively believe it can be done. We can make a change together.
What do you think? Check it out
(I’ll be posting a PO Box as to where to send your artwork later today or tomorrow).
Discarding my Obsessions with Understanding Death...
Today, another step in a positive direction; I’ve officially turned off my Google Alerts for the following keywords:
Scleroderma
Mixed Connective Tissue Disease
Pacemaker Defibrillator
Heart Failure
Autoimmune Disease and autoimmunity
Lupus
Sure, it’s great to know what’s happening and at times I even find articles within these alerts that I write about here, YET they...
Pacemaker Defibrillator - Relief!!
For the two and a half years that my pacemaker defibrillator (what I call my “Kicker”) has been implanted, I have felt a constant “beating” in my lower left abdomen. The reason for this is simple: one of the three leads (wires) that go into my heart is close to the nerve that controls your diaphragm. It’s the frenetic nerve and it runs from your brain down to...
May 2010
2 posts
The "What Now's?"
I find myself in such a new place right now. Feels like I am completely starting over and to be honest, I am feeling a bit lost.
Clearly the past three years have thrown me for a loop. Whatever life I was living came to a screeching halt and got flipped upside down and shaken and stirred and sent on an insane roller coaster ride the second I heard the words “Lauren, your heart is...
The Pacemaker Difibrillator on Display
It’s that time of year again where layers of winter clothes can no longer hide the metal box in my chest from the rest of the world.
The first couple of hot days that I wear t-shirts or tanks are always quite strange. It’s easy for me to forget about my pacemaker/defibrillator (I call it my “Kicker”) while I’m out and about, because it’s just part of my body...
April 2010
6 posts
A Healthy Dose of Denial
After several concerned emails I wanted to write and say that yes, I am ok and thank you for all the love!
I have taken a brief hiatus because every so often I need a break from talking about things like heart failure, mitral valve prolapse, autoimmune disease, pacemakers, defibrillators, doctors, hospitals, scleroderma and medical problems on the daily.
Sometimes I convince myself that if I...
I'll never know
Feeling awful awful terrible today. First time in weeks and weeks that I’ve felt so achy and sore. Bone crushing pain and extreme fatigue. I wonder why this didn’t happen while I was away from home for a while? What about it here triggers these flare ups?
I’ll never understand this. In bed all day long.
Miracle
mir·a·cle
[mir-uh-kuhl] –noun
1. an effect or extraordinary event in the physical world that surpasses all known human or natural powers and is ascribed to a supernatural cause. 2. such an effect or event manifesting or considered as a work of God. 3. a wonder; marvel. 4. a wonderful or surpassing example of some quality: a miracle of modern acoustics. 5. miracle play.
If you...
Spontaneous Remission
Spontaneous healing, also called spontaneous remission or spontaneous regression, means an unexpected improvement or cure from a disease which usually is taking a different course.
I think about this phenomenon a lot.
Isn’t it a beautiful thought?
Update on my Heart
I’ve been avoiding writing about this because that means I have to think about it.
Last information I shared about my heart was the results of my TEE, the test the docs gave me to see if I would be eligible for a trial where they fix your leaky valve with a clip. Well, I wasn’t eligible which left me in the same place as before we started the trial testing: leaky valve,...
Figuring out an electric life
Finally! I was able to gain some weight over the last few weeks. I love when I gain weight because it means that my body is healthy. I also feel more like myself when I have a few pounds on — I don’t really dig the “sick” look when I’m lingering around 100-105 lbs.
The only issue with this is my kicker (pacemaker defibrillator). Since there are three wires...
March 2010
16 posts
Last Day of March - the month for Autoimmune...
As I have previously mentioned March was declared National Autoimmune Disease Awareness month.
As a last push, maybe we can use today to spread information. I have a SaveLaurensHeart page where I hope to gather many more fans to keep the struggles of chronic illness on the radar and hopefully one day find a cure or even spread knowledge for prevention. Please feel free to invite your ...
Found Freedom
It’s amazing what a few weeks absent of doctors does for me.
It’s obvious from this journal that I have become somewhat obsessed with healing myself which includes attending many standing appointments each week —most of which I have come to convince myself that I now wouldn’t be able to live without.
It takes a lot for me to leave this “routine”. I feel...
The Good Life
As far back as I can remember I have always gotten a bit “strange” around my birthday. About two weeks before I go into this sort of funk. It’s not a sadness, it’s not really anything I can put my finger on actually —it’s just this “thing”. A heavy fog around my head. I feel like I am not really in my body, a bit irritable, and in a complete ...
Truth
The average American woman is eight times more likely to have autoimmune disease than breast cancer (via)
We all know what a pink ribbon means. We recognize the celebrities that have come out in support of a cure for breast cancer, the inspiring crowds that turn up for breast cancer walks, and the charity events held to raise awareness and hope .
My wish is for a day in the close future that a...
Misconceptions of Autoimmune Disease - A Story...
I started writing here with one goal on my mind: raise awareness for autoimmune disease. This is a story I’ve never shared before except with those very close to me but I feel compelled to write about it now in the spirit of spreading awareness during this month that has been dedicated to doing so.
I was diagnosed with Scleroderma / Mixed Connective Tissue Disease in Spring 2001 at 19...
Autoimmune Disease Summit
Here is the official webcast of the first autoimmune disease summit which was held on March 3, 2010. It was the kick off to this exciting month of awareness. The main theme? “The Global State of Autoimmunity Today”
From the press announcement:
“The summit will bring together researchers, patients, policy makers, and the media to bring a national focus to autoimmune diseases...
List of Autoimmune Diseases
“…one in twelve Americans -and one in nine women -will develop an autoimmune disorder.”
- from The Autoimmune Epidemic by Donna Jackson Nakazawa
There are over 100 Autoimmune Diseases and counting. We also consider Autoimmune-related illnesses when we look at a list like this -meaning diseases that usually overlap or occur along with autoimmune disease. In honor of...
Rheumatologist Waiting Room
Why are waiting rooms so depressing?I mean, a little effort can go into appearance. They are the worst places. I never understand why the windows are always covered up with thick discolored blinds or dusty curtains. They should open them and let in the natural light because these flourescent ones are just awful. Chances are if you’re in a waiting room you are sick or nervous or waiting for...
AutoImmune Disease Awareness
March has been named National AutoImmune Disease Awareness Month!
This is so close to my heart since I am passionate about spreading awareness. It is the reason I started writing here. We have to raise awareness and educate people. The more we bring AutoImmune Disease into our national dialogue the more attention it will get —which means funding for research and eventually finding cures...
Dysfunctional Relationships
I have been attempting to order DVD copies of my latest test for one week now. I have called two offices to have them help me, left voicemails at the number I was given for the Echocardiogram desk at Columbia and NOTHING. It is a seemingly impossible fete!
You must go in person to actually sign for these copies which I am aware of and ready to do BUT I wouldn’t even know where to go at...
How do you take a vacation from your body?
It’s one of those times in my life where I am feeling quite overwhelmed.
I have not stopped to reflect and truly put things into perspective since last week’s flurry to get my test results and all of the nonsense that comes along with something like this. Learning new information like my valves are “eccentric” (and therefore could not be helped by the Evalve trial) is...