About me: I live in NYC, and I am on a non-stop quest for healing.
I have a chronic illness called Scleroderma / Mixed Connective Tissue Disease. I also have a pacemaker/defibrillator implanted in my chest.
The Scleroderma has affected my heart causing it to be 70% covered in scar tissue.
The docs tell me there is no cure for Scleroderma. Yet, I am determined to cure myself.
Thanks for being in my world
Become a fan and help spread awareness www.facebook.com/savelaurensheart
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 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.
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 I didn’t feel right (he said it was just anxiety), a diagnosis of ocular migraines, and extremes of weight gain and weight loss, I went to the ER because I thought I had bronchitis. My chest was tight, I couldn’t breathe and my complexion was a pale greenish gray. In the ER it was business as usual where the docs didn’t see anything alarming. They did a few tests and were ready to send me home when a guardian angel in the form of an ER doctor had a hunch and said “you know what Lauren, you seem to know your body, you think something is off, let’s do one last test.” At this point I sent my then boyfriend (now husband) home to rest. It wouldn’t be a big deal, I said, just another test that would probably show nothing.
I couldn’t have been more wrong. That test showed my heart to be pumping at 15% (normal is 55%-60%). It was the faces as I looked around the room that let me know first the severity of my situation. They asked me a few questions, put an oxygen mask on me and the chaos that commenced lasted for about two years. Actually, chaos is putting it mildly. Doctors, hospital visits, opinions, facts, procedures, medication, implants, it was the most terrifying time of my life.
October 16th, 2007 was the day that changed my life. I look back on the time that’s gone by and my head can explode. I mean SO MUCH has gone on.
Given the nature of the day it is natural to reflect. But looking back I do get overwhelmed and I wouldn’t even know where to begin to talk about how I feel. The way I’ve made it through is taking one day at a time and dedicating myself to healing. Truly believing that one day I will be better.
I’ve been especially dedicated to a new healing routine over the past 6-9 months –to be honest it’s been more like a hibernation, really. Every inch of me wants my heart to get better so I have to admit, I’ve been hiding a little. Sometimes it’s hard to be in the real world among your peers when you’re battling something so huge. It was on Sunday the 16th , my “Celebration of Life Day” that woke me up a bit. I have to even myself out. It can’t be about healing healing healing all the time. Balance…. That’s my goal these days.
I leave you with one thought. Take it from someone who had the rug pulled out from beneath them… The record could stop at your party at any time my friend. Celebrate your life each and every day. Do things that scare you, live life all the way, love with every cell in your body, eat that piece of chocolate cake! Wear your favorite dress, or your “good clothes” to the market, go places, see things, and don’t ever look back.
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” and her subsequent appearance on Oprah a few weeks after the documentary’s premier brought her into my orbit and made me feel not so alone. Her infectious attitude and fearless approach to life came at a time when I needed it most and I credit my approach to healing and attitude about healing to Kris. After all, we were similar… she was young, a NYC party girl, she too seemed like an unlikely face for a deadly disease when “the record stopped” as she says in her doc. I started this online journal to share my experiences after I felt the impact her documentary had on me.
As I took on the full-time job to heal myself I used Kris Carr’s journey as a road map and when I needed inspiration I would turn on her documentary to remind myself that I wasn’t alone. Last year at a particularly hard time in my healing process Kris was offering one on one phone consultations and I jumped at the chance. Once again, she was able to set me on a path with my head straight and a reminder to surround myself only with people who bring me up, people who support and protect me. That phone conversation was so needed at the time and coming from her, someone “like me” who had experienced all of the same mortality issues at a young age, it inspired me like the first time I had saw her on tv. I felt strong enough to face what was ahead of me once again.
As time went by I followed Kris. I belong to her online community, I go there for juicing recipes and support, I volunteered at events around NYC where she was appearing just to hear her speak.
And now I find myself inspired by her yet again. My hero through the biggest test of my life, she reminds me how beautiful it is to have found a “guru” in the form of our chronic illnesses. To see the beauty in what it has taught us, to embrace and accept, and I watch her catapulting into the proverbial spotlight and I am proud of all she stands for. I love that she is a fighter for health and wellness; a fellow warrior in healing. I am proud to be a part of her tribe.
This article again came at a time when I really needed it. I needed inspiration, a kick in my ass to get out of this funk I’ve been in for most of the summer. Kris always reminds me why life is so sweet and this journey of mine makes it sweeter, it makes me special. I know how much I want to live this life, not just exist. She reminds me to keep going no matter what.
I even have the pink streak in my hair to remind me that I am not alone.
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 Special price of $25
Click Below to take advantage of the summer Special and get 4 bracelets for $100. They are so great to give to loved ones as gifts!
I’ve been hard at work on my intense vitamin schedule and I am determined to keep going strong until my heart is healed… OrthoMolecular Rockstar over here! It has now been four years that I have not been able to work and yet those medical expenses just keep on rolling in! My vitamins alone cost $600 per month (not to mention my other expenses like doctor visits, transportation, medications, etc)! It is quite a challenge to keep up.For this reason, I created the Beautiful Heart Bracelets several months back just in time for the holidays, and while I had a great response, sales slowed down after January. So please, take advantage of my summer specials and get your Beautiful Heart Bracelet today. As always, I am forever grateful for your support.
The bracelets come with a customized muslin bag that you can reuse!
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 white-knuckling it for weeks now, and it’s about that time when the pain starts to change you. It changes your personality, your patience for people and things. It’s a constant car alarm set off in your head day in and day out. Irritable isn’t the word.
Sit, stand, sit, fetal position, lie down, stand up, pace…. torture.
What is a human’s breaking point I wonder?
The cherry on top of this gift:
To say that managing chronic pain is difficult is a major understatement. Up until this week my Rheumatologist was managing my medication regime. Recently the pain has been so bad that I have had to up the frequency of my pain meds which has resulted in my tolerance going up as well. I am completely open and honest with my doctors, I keep them in the loop at the very least weekly, and earlier this week I was YELLED AT by my doc when I told him I needed more pain medication. He was screaming at me on the phone. I was made to feel like I was doing something wrong, like I CHOOSE to be in a position where I need to call this man up and rely on HIM to help my pain. It’s the worst. It is degrading, and hurtful beyond words to be looked at like I am something other than a patient suffering from intense, debilitating chronic pain. To be accused and treated like a piece of shit crushed me. Instead of talking it out with me this doctor decided to wash his hands of the situation and tell me to “go to the ER” which is just not an option for me. It was a big “fuck you, I don’t care about you” get out of here, this is too hard for me now.
Since then, I have been home every single day nursing my pain. I refuse to go to the ER. I can see the predicament so many chronic pain sufferers are in when their doctors do not understand their pain, or maybe do not believe them. I’ve heard horror stories like this, I’ve heard terrible stories in support groups where women have had to actually buy drugs off the street because no one has believed them or managed their pain correctly. It’s one thing if you want to, it’s quite another if you have to because your doc won’t listen. That is desperation. This is now the second time I have had to experience a doctor’s lack of compassion when it comes to this touchy subject. Yeah yeah, I get it, people abuse pain killers, blah blah, and it’s such a slippery slope with these things and I understand the need to be efficient. But to be an asshole as well? Not OK.
I don’t even know where to go from here. It makes it hard for me to trust anyone with an MD attached to their name at all.
Not one doctor understands what it’s like to live with pain like this each and every single day. And I’m proud of myself because I handle it quite gracefully. So gracefully in fact that almost everyone around me forgets that I am in constant pain. But it’s there and it is MIND BLOWING. It is changing me. Chronic pain is a thief. It sucks the creativity from my veins, the vocabulary from my brain, the motivation from my body. It is silent and deadly and relentless.
I must stop here or I fear I will go on and on. I don’t even know what I hope to gain from this post. I guess I need to resuscitate the hope I once had. Reasons to keep going because right now I feel like I have nothing left to give.
I cry myself to sleep almost every single night. Well, on the nights that I actually sleep…
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, or anyone with a chronic condition, it is a tricky situation since it’s rare to find a doctor that can understand my situation and look at my body as a whole. Luckily I am at the hospital where my “team” of docs can be found so that does help a lot but they aren’t the ones you interact with now, are they? It’s all nurses and staff who are sometimes less “enthused” to help. I also have this great fear (also from experience) that once you’re in here, it can go downhill pretty fast, and coming in with a seemingly controllable situation can go south pretty quickly.
They have found where I was bleeding from. Turns out there is a small ulcer in my esophagus. BUT I lost such a large amount of blood from the time this whole thing started that my morning visit from the doctor had him talking blood transfusion. Losing blood is not good for anyone but as a heart patient my levels are dangerous, and according to the doc I really shouldn’t go home like this. I shutter at the word “transfusion.”
I had finally calmed down a bit after the past few days but this got me worked UP just now. I can’t say I’m comfortable with this idea at all.
Has anyone out there ever had a transfusion? If so, could you please comment and leave your email or email me so I can ask you some questions? Thank you so so much.
I can be reached at this address: savelaurensheart [at] gmail [dot] com
Until then, I am meditating on leaving here asap with my own blood at a very full, luscious, delicious level to heal and repair my body.
Although, I can’t lie… I am pretty upset right now. I feel as though I’ve lost my coping mechanisms of the past.
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 found myself feeling more and more disconnected from the world. Even my friends seem like strangers after three weeks of pain hell. How could they ever truly understand what it’s like? How could I expect them to? In addition to my fabulous friends I need to others living with a chronic illess. New friends that go through the intense ups and downs that I go through on this wild path I am on! Our paths should cross!
To be totally honest, I used to be weary of this concept of a group where you get together based on an illness you share. I found it a bit indulgent, and scared away from seeing others who may be really really sick, or was apprehensive at getting together to commiserate. I honestly didn’t see how it could be helpful to me at first. I think I was scared to talk about it, still in denial about my diagnosis, my limitations, my identity as a patient with an autoimmune disease… I realize now I was mistaken.
The other challenge was I hadn’t yet found a support group that I felt comfortable in, one where I identified with the others (we didn’t share similar outlooks on healing, age gaps and differences in lifestyle made it difficult for me to see how one of these previous groups that I had found through the hospital or doctor’s offices could help me sort out what I was feeling).
Here I am over three years later and I find myself searching for others who understand what this is like —only this time I am tailoring the group to specific needs of a patient like me. I will create the environment that I crave and find others similar to myself , and the possibilities are endless from there!
I am starting the screening process this week. It is important to me that I find the right balance for our group so we are all comfortable enough to share this very personal and vulnerable side of our lives.
If you or anyone you know fits into the following requirements I ask that you please reach out to me. This can be a life changing experience! I also ask that you spread the word please
- Women between the ages of 18 and 40 who are living with chronic illness or any Autoimmune Disease (i.e. Lupus, Scleroderma, Fibromyalgia, Chronic Fatigue Syndrome, Multiple Sclerosis, Hashimoto’s, Rheumatoid Arthritis, etc).
- You live in or close to (or can get easily to) downtown Manhattan (where the meetings will be held).
- You are interested in a support group that focuses on positivity, empowerment, and being a proactive advocate for your health. We will cover everything from what’s bugging us, to scary doctor’s visits, to juicing and anti-inflammatory diets,to achieving our goals (both health and personal), the list goes on…
If you are interested please contact me at savelaurensheart [at] gmail [dot] com