Tag Archives: hope

Process and Prepare

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It has taken me about this long to normalize after last week’s hospital stay.

Intense is the word I’ve been using to describe it.  I was treated very well at Columbia Presb but I also had a lot of crazy stuff done to my body within the first two hours of being admitted and I feel like I am just recovering from it.  They immediately sedated me and did a test  (a TEE) where they stick a camera down your throat to get a close look at the heart.  This was to ensure that I hadn’t developed any blood clots during that time that my heart was bugging out –atrial flutters, as they call it.  It felt like my heart was going to pound right out of my chest and I have no idea how I stayed like that for three days before going into the hospital.  I get these things in my mind, you know? I get determined, and I decide that my heart will correct itself.  Well, when the third day came and I couldn’t even stand I knew it was time to surrender and listen to my doc.  Off to the hospital we went.

After this first test (luckily there were no clots) came the big show.  Cardioversion.  This is when they shock your heart back into a normal (sinus) rhythm.  Like in the movies when you see them say “clear!!”  Anyway, they give you a super heavy sedative for this one and you don’t know what happened until you wake up with small burns on your chest from where you were shocked.  I felt much better after this since my heart wasn’t racing for the first time in days.  Yet, there was still something remaining…. a meeting with the surgeon.

I had been avoiding the cardiothoracic surgeon most of the summer.  Even though this open heart surgery is hanging over my head I tried to pretend everything was fine and have a fun time.  Turns out you can’t avoid reality forever.  After a talk with the surgeon, my doctors, and a weekend of many phone calls and a year of research under my belt, I have decided to go ahead with open heart surgery to repair my (mitral) valve.  Last week was a clear indication that I can’t put this off much longer, there is too much at risk … if that happens again it could significantly weaken my already fragile heart.

So, once I made the decision to get the surgery I went into business mode.  Getting tons of stuff done, my records sent out, preparing, talking with my family.  I want the best mitral-valve-repairer in the US.  I want someone who has done hundreds of these surgeries, an expert on repairing the mitral valve.  It is very important since I am young and I hope this will be a badass “band-aid” to keep my heart strong enough for 10-15-20 years before I have to make any more major decisions.  I’d like a chance to live my life without this heavy decision and scary surgery hanging over my head.

In true Lauren fashion, now that I’ve made up my mind I want it done asap!  We are looking at this winter, hopefully January so that my 6-8 weeks of recovery is done while the weather is cold and bitter. I would hate to miss out on summer weather.

Back to my full-time position now.  The phones haven’t stopped since I’ve been home.  I want to be sure that anything I can have control over is done to my liking. Sure, there are tons of emotions; I don’t really sleep from nerves, and I am super scared to think about being cut open or waking up with a tube down my throat, but I haven’t allowed my brain to go there yet.

For right now it’s all business.  After that I can cry and be scared.

Pop Heart

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Wow, I’ve been slacking when it comes to posting all of the beautiful hearts that are streaming in!   They are piling up so I plan to post some every day this week…

Today’s heart is an amazing way to start the week.  It is so powerful and FUN. It put a big smile on my face.

Thank you to Nadia who sent this in from Singapore…  much love.

Innocence

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Here are some hearts from the kids that sent them into me a couple weeks ago.

I took all of them and just sat in the middle of the colorful hearts on Saturday.  I could feel the love, I could see all of these sweet little 1st, 2nd, and 3rd graders coloring away just to make me and my heart smile. It’s amazing how much I am lifted just by looking at these.  I spend time with my hearts every day.  Morning and night, they help me picture a perfect healthy heart inside of me.

Even more amazing?  Some of the messages they wrote to me… Enjoy.

“…are you a christian?”

don’t be sick ever again!

so precious

i hope the sickness goes away soon

don’t be worried

be brave

there is always hope

don’t be scared

so sweet

don’t be scared

well wishes and a sad face

“get healthy. or make a 1,000 paper cranes and you get one wish from the gods”

sparkling heart!

“we could keep your heart healthy by eating vegetables and fruits”

“drink a lot of water and eat fruits”

“…if you have no heart you cannot breathe”

“you have to eat fish and crab”

keep your heart healthy by eating fruit

vegetables milk and exercise

a beautiful freehand drawing

Pump it Up!

thump thump thump

i love his illustration

rainbow bright heart

dude!

stay healthy be safe

a heart that shines

admiring all of my hearts

feeling loved

Discarding my Obsessions with Understanding Death and Illness

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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 do more harm than help on my mental state most of the time.   Every single Scleroderma alert typically opens up with an announcement of someone’s death that is covered in a small town newspaper.  It talks about their fight with this incurable disease, and how this good person didn’t stand a chance against it… and while I purposely don’t let it affect me, it must do damage and terrify me on some level because I think of them from time to time.  Really though, who needs to read about death every day?

The thing is, I’ve gotta keep my head in the “game”, and my healing and positivity game when it comes to my condition is pretty on point right now.  I’m happy to let these obsessions go.  Once upon a time I felt like if I read every single piece of information regarding my condition(s) available out there on the web I would miraculously cure myself.  Like, if I could just wrap my head around these illnesses, or narrow it down to the very second I got ill, or my heart started failing, and somehow make myself understand, I would make it all disappear…

Happy to be at this point.  Baby steps, but progress nonetheless!  The only Google Alert that I kept?  My fave, Stevie Nicks.

The “What Nows?”

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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 pumping at 15%.”

While it’s true that I wish I never had to witness my body struggle with illness and heart failure, I am grateful for the transformation I’ve watched happen.  It’s changed me tremendously and taught me things about myself that I may have never otherwise learned in a lifetime.  True, I am grateful every day, but I can’t help but go through bouts of frustration with my “What Now’s?”

Since I am feeling better (and better and better and better), I am slowly gaining the luxury of living outside of the survival mode I’ve been in for so long.  Questions like “what is my passion?” and “what will fill me creatively, or  intellectually?” are beginning to surface.  It’s like going through a rebirth of sorts, viewing the world with endless possibilities all over again.  It’s overwhelming in a good way.  It’s simultaneously terrifying and liberating, and all of the by product emotions that come with those sensations.

The strangest part about this is living “in between” worlds; the world where I see myself as a healthy human exploring my future vs. the world where my sensible side reminds me not to “push it” physically and to keep up with my health regimen, doctor appointments, and all of the necessary upkeep of researching my medical options (open heart surgery in this case). This balance is so illusive!  Two weeks ago I am feeling amazing and free and healthy, making big plans –only to find myself in bed for most of last week struggling to work up energy to buy some groceries or even eat them.

What will this week bring?

Frustration

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I’m at my best when I stay far away from the doctor’s offices.  Unfortunately, I cannot stay far away for very long considering that I have a standing appointment with my heart failure specialist at Columbia every three months.  They like to keep a close watch on my ticker since it is quite the mystery…

In between appointments I keep my mind in a great place.  I truly believe with every cell in my body that I will heal myself, that my heart will improve –if not heal completely.  I work really hard with different healers and holistic doctors, I do my own work, I read and research.  But most of all, I believe and I stay positive.

There’s nothing like a trip to the hospital to drain that from you.  It’s like going into battle for me.  Simply walking into the hospital is enough to give me an anxiety attack.  I prepare mentally for the worst and I put up a shield so no words can hurt me.  Not that my doctor wants to hurt me but their “frankness” can be a lot for anyone to handle.  For instance, this time around a single sentence is what stung the most; when I asked my doc what she would do if she were me in this situation she began looking through my files and started her answer by saying “well, eventually we are going to have a problem…”  meaning, according to her medical training my heart is bound to only go in one direction.   She’s the expert, that’s why I go to her, but I just can’t think like that. No way.

So, here I am in the aftermath of a trip to Columbia at the end of last week.  Part of me has to be sensible and prepared so I do my research and consider what we’d have to do in the event that I do need open heart surgery to repair my valve.  I hate even thinking about it, but it would be stupid of me not to.

My current problem is how do I do both?   How do I believe and stay my own course of healing while making preparations for the sensible world of western medicine?

I’m very cranky today.  Sometimes I get incredibly fed up with having to make decisions about my health/my life constantly.

AutoImmune Disease Awareness

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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 and/or prevention for these terrifying diseases.

“Today, fewer than 13% of Americans can name, unaided, an autoimmune diseases.This is staggering when one considers that there are 100+ known autoimmune diseases, all of which are chronic, many life threatening, and that as a category, autoimmune diseases are one of the top 10 killers of women under the age of 65. With the designation of March as ‘National Autoimmune Diseases Awareness Month,’ we begin to focus national attention on this issue, and it’s long overdue,” says Ladd.

According to the American Autoimmune Related Diseases Association (AARDA) here are some things we can do to spread awareness:

1. Be aware that autoimmune diseases target women; 75% of patients are women.
2. Know that autoimmune diseases tend to cluster in families. If your mother had rheumatoid arthritis and your sister had Crohn’s disease, you could be at higher risk than usual.
3. Autoimmune diseases are on the rise in the U.S. and around the world, celiac disease has tripled in the past 10 years in Minnesota alone.
4. Because of lack of early diagnosis and onset of treatment, healthcare costs for autoimmune diseases are overwhelming for patients and the healthcare system.
5. Everyone should know the facts about autoimmune disease.

Please spread the love.  It can be so simple… you can feel free to share my story with one or two people that you know this month.  There are so many like me who may not have a voice.  So many (mostly women) who have been treated like hypochondriacs and often don’t find a diagnosis for their symptoms an average of three years after the onset of their health crisis.  It NEEDS to be talked about.  Let’s talk about it all month long.

Osteopath today

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Today I am off to the Osteopath.  I credit him for a lot of my progress this year.

When I first started seeing the Osteopath I had never heard of this type of doctor before.  I started seeing him one year ago this month and it was right after one of my many awful ischemic colitis episodes.  I suspect these attacks happen from all the medication I was taking and it is basically the worst pain I have ever felt in my life.  I was hospitalized 13 times in 2008 alone mostly from these awful episodes. The blood vessels in my stomach contract and prevent any blood to reach the intestines causing lack of oxygen and mind bending agony as well as some other gross stuff which I won’t get into here.  So basically, when I saw Dr. V for the first time my stomach was in shambles and I was incredibly underweight and weak after yet another hospitalization.

Over the past year I have seen him at least once a month (in the beginning it was once a week).  I noticed how great I felt after each adjustment and since I saw him two weeks ago I’ve felt more and more amazing with each day.  I really trust my Osteopath because not only does he know what he is doing (super smart dude) but he also really cares about his patients, and he knows the human body well.  He is also a true natural healer, a believer that in most cases the body can and will heal itself if given the right conditions.  I was immediately drawn into Osteopathy because of the holistic approach it takes to the human body.  The belief that every organ must work harmoniously to create an optimal environment for health and healing makes perfect sense to me.

A treatment at the Osteopath is as simple as lying on your back for thirty to forty five minutes.  There is no cracking or pulling as in Chiropractic medicine.  This is completely gentle, and the doctor usually places his hands on your lower back (sacrum), back of my neck and head, face, and over my stomach.  You can feel him manipulating the muscles and bones very soft and easy.  There is no discomfort or pain involved.  It’s basically nap time.

I am so grateful to have found a doc like Dr. V.  From my experiences I know doctors like him are very hard to find in a city filled with cold ego maniac physicians.  I know that with his help I will be healed and brand new.  He says my disease is regressing.  He says he believes I can be one hundred percent healed of my condition. And I believe him.

Today is a Good Day

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I’m STILL feeling great!  Lots of energy and no pain.  I fight the urge to ask why… I’m just so happy to feel comfortable in my own body.

I wake up every morning and I’m so thankful, and I lie there and think to myself:  wow, this is what it is like to feel ‘normal‘!  This is what it is like to have a healthy body, to wake up every morning where it isn’t a question as to what you will be able to physically do today.  It’s amazing because I always wonder how that feels.  I forget the beautiful sensation to feel comfortable after weeks and weeks buried under bone crushing pain and exhaustion.  No meds, no painkillers, it’s just me.

I can feel my body healing.  All of the hard work (very hard work) I put in over these past couple of years (physically and mentally) seems to be taking hold.  I am so happy I could cry.  I want this to last forever.  Today is a good day.