I dream every night.

I used to have terrible dark dreams almost every night and I would wake up so scared that I couldn’t move.  Some of it was from the medications, they would give me trippy druggy dreams.  When I was really ill I couldn’t tell the dreams apart from reality and I would lie there, in my sweat, for a long time with my eyes open before I could make sense of what was happening and I realized it was only a dream.

Recently, my dreams have been lighter although equally vivid and epic.  They are long and complicated, often involving people in my life.  I also feel my dreams.  For instance, if I am crying and screaming in my dream it feels as if I just got a ton off my mind upon waking.

Last night however, was the first time I’ve had a dream where I was completely full of bliss in the face of very strange situations. It’s so unreal that I have to write about it. I was walking through the streets of suburban neighborhoods at night with bright green lawns lining the streets.  On every single lawn there was a pack of white wolves. They were majestic and extra large, and they just all watched me and turned their heads as I passed.  That was their only movement, the head turning.  This went on for so long.  And when I woke up I felt safe and really happy.  BUT I cannot stop thinking about these wolves today.

I keep asking myself what does this mean?  What could it possibly represent?  My hope is that I am cured and this was a sign of some sort.  That’s what I really want it to symbolize.  I can feel something but I’m not sure what….

Got lots to do in the coming weeks.  Phone calls, research, tests and doctor appointments.  For some reason I am not feeling so overwhelmed right now.  Like, this time around I feel a bit more in control.  Sure, it’s because I have my doctors and I have experience in dealing with all of this.  It also helps that this time around I am way more in control than I was two years ago when the bomb dropped— not weak, not fainting, not terrified I am going to die every night. Yet, there is a little extra something going on here, too.  There is a big part missing that I am super happy about.  It took me a little to figure out what it is and now I know…

In the past, anytime I have gotten news that I view as an obstacle on this path of mine to being 100% healthy, I got angry.  The anger consumed me.  The bad days, the limitations, the aches and pains … the rage I felt for this all kept me awake nights on end.  I would absolutely hate it all and I just couldn’t stop being mad. Mad for so long.

This time it’s just not there.  Frustration?  Absolutely. Sadness? Of course.  Fear? Definitely.  But Anger… that oh-so-terrible toxic emotion has gone. My therapist tells me it’s all about ACCEPTANCE.  Such a big big word.  And yeah, I agree.  It’s so new and I am sure I still have a way to go, but for the first time in all of this I can actually say I am at terms with what’s happening.  I am not questioning or blaming.  I just am.

It has taken a LOT of hard work mentally.  A lot of trips to the therapist, a lot of searching inside and asking scary questions and really truly facing the ugliness.  But WOW am I glad to see it working.  Dealing has been much much smoother.  And I’m all about that.

The drug Gleevec has been on my radar since last year when a doctor had mentioned it was being used in trials against Scleroderma.  Originally developed for Leukemia, they were having good progress with it.

Since then I have been reading articles like the one I link to here.  It is promising, yes.  The man quoted in this particular article is often referred to as one of the best if not “the best” Rheumatologist in New York.

This man was my doctor for seven years and he failed me.  Very often making me feel like I wasn’t “sick enough”, he would take my complaints and look at me like a hypochondriac.  Even in the throes of my severe heart failure (fainting on the streets of NYC, severe headaches, nausea), I went to him, begging him to please find what was wrong with me.  He told me it was anxiety, then probably migraines.  And finally, when I was diagnosed he didn’t even believe the Lenox Hill ER’s report that my heart was pumping at 15%!  I just never LOOKED sick enough for him and his ego always won.  Needless to say I have not seen him for over a year now and don’t plan to ever again.

Why the rant now?  Well because turns out he was leading this study on Gleevec for the past couple years at the Hospital for Special Surgery.  Never once did he mention this as an option for me nor put it on my radar.  Again, I was just never SICK ENOUGH for him.

I cannot explain the deep frustration I experienced trying to get diagnosed.  Since I look generally healthy on my good days most Rheumatologists just see a silly girl crying wolf.  I had to get a pacemaker/defibrillator installed for most doctors to finally take me seriously.

Either way, Gleevec is a shining light in the cure for Scleroderma.  Especially for the ones who suffer from skin hardening.  I hope this goes far enough to be available for those who are suffering with tightened skin and hardened lungs from this awful disease.  I also hope this doctor has gotten a bit wiser and maybe listens to his patients these days when they say something is wrong.  I’ve tried for so long to forgive his arrogance.  He pushed me aside when I needed help the most.

PS – the intention of my blog has never been and still is not a place to trash doctors.  I share these stories to share the knowledge that people MUST listen to themselves and be your own advocate when it comes to your health/ your life.  doctors are just human, and in some cases they happen to be arrogant foolish humans who cannot admit when they are wrong.  trust your instincts.

Two years ago TODAY I found out that my heart was failing.

It was unexpected and my entire world as I knew it stopped and became something unfamiliar and scary.

It feels more like a lifetime rather than two years.  It feels like a huge part of me is no longer, only to stay in the past forever, and I have been reborn in a sense.

The amount of emotions that are squeezed into the past two years are beyond comprehension.  If I were to map it all out, or somehow bottle it, it feels as though it would be equal to a volcano erupting, an earthquake, or some other earth-shaking event.

Feeling pensive today.  I know my body parts remember today’s significance as well.  Everything changed that day.  They felt it, too.

I’m back to my full-time status at operation heal Lauren. The next two weeks bring many doctor visits and tests. I am in business mode. Emotions (fear,frustration, sadness, anger) have been pushed aside because it’s time to just get shit done! I am always amazed at how much time managing an illness takes. I’m not talking about sick time or recovery time after a procedure, or days spent in bed. The amount of time I spend on the phone with doctors offices, insurance companies and pharmacies is unreal. Planning and arranging appointments and procedures, remembering to file claims and such. It is truly a full-time job. Only, my salary in this situation is my life. If I put in this time I will hopefully come out on the other end with quality of life and HEALTH! Not complaining, just marveling at what being “ill” really means. Every facet of your life is infiltrated by the medical world. You learn ins and outs just like any job you spend a lot of time at. Right now I write this in the comfy refuge of the Ace Hotel Lobby. I try and surround myself with things that make me happy in between the madness. I have one hour between doctor appointments and I plan to sit here, listen to some music, sip my mint tea and clear the head. Then, back to work…

I am starting my quest for a stem cell treatment for my heart once again.

In the past I found a company that I felt really good about. They are called Vescell and they give treatments in Bangkok.  About a year and a half ago after speaking to some ambassadors for the brand I asked my most trusted cardiologist at the time (at Cleveland Clinic) what he thought.  No, not yet, he said.  He told me while there were many amazing outcomes from this work in progress he had also seen some horrible things. He didn’t say this specifically about the company Vescell but more as a generalization.  I left it at that and kept watching Vescell pop up in the news every so often.  All good things.

Now that I am faced with possible open heart surgery I want to revisit this.  It could potentially help ALL of my problems including the newest one!

This, among two other projects (more on that to come), is my newest project.  I am so determined to really find out about this and how I can get some.  I think it’s the answer to my heart problems for now.

I am totally open to any suggestions, thoughts, etc… Feel free to email me at the above address.  I am on a mission.

I don’t know why I do this to myself but last night I was researching open heart surgery.  I just wanted to know more about it, try and maybe get more acquainted with the term since now I just shutter when I hear those words.  I figured if I could learn everything there is to know about it then I will no longer be afraid. It would take the ping I feel in my body when I think about having the surgery.

Well, I was definitely wrong.  I think I finally stopped when I read the words “heart lung machine” to describe the recovery process.  I felt a little like throwing up and I shut my computer.  Sleep after that?  No shot.

Yesterday my heart failure doctor’s office gave me a call.  They wanted to know if it was alright to suggest me for a research trial at Columbia.  It is for a procedure where they go in through the vein in your groin to repair your valve with a tiny “clip”.  That means no open heart surgery.  However, there are many “buts” here.  I would have to be accepted as a candidate and go through a screening AND I’m not even sure how I feel about having another foreign object placed inside my heart!  Especially one with limited years of research behind it.  Of course anything sounds better than getting my chest opened and having a zipper scar but a “clip”?  I don’t know.

Ok, now it’s time to stop obsessing.  I need to move on and take this as it comes.  Lots of tests and doctor appointments the next two weeks.  I need a lot of fun in between.

Now if I could just get out of bed.  I’ve exhausted myself (mentally and physically).

Check out the evalve here.  Interesting yet still pretty creepy yes?