Just got declined from even getting a QUOTE for an individual plan from Aetna or GHI  since I have a pre-existing condition (“any condition that requires I be on more than two medications).  This is so messed up.  I will not be able to get insurance from any of these insurance monsters.

I tried HealthyNY…. no go because I didn’t (ah hem, COULDN’T) work in the past 12 months.

I am sitting here getting stressed out and really angry.

I feel like I do not have any options.

Sure, I can write a letter to my congressmen, senators or even Obama but this will not help me before March 31st when my insurance ends.

Dr. D (Rheumatologist) called me on Friday.  I was surprised and happy to hear that he has been “thinking about my stomach attacks” and he “talked them over with Dr. M” (my stomach doc).  This was already progress, such a wonderful feeling to know my doctors hadn’t forgotten about me when I left the hospital!  They were actually trying to figure things out!  As you can see by my surprise, this is quite rare.

Dr. D proceeded to tell me that since we suspect the stomach attacks to be a form of Raynaud’s (a circulation problem that manifests itself by turning only my left middle finger BLUE in the cold —it’s so weird) he would like to treat it with a “new class of drugs that are being used to treat Raynaud’s”.

The thought is that the blood vessels constricting and preventing blood from getting to my intestines means that these attacks are a form of this condition.  Very rare. So rare in fact, they have never had a patient with this.

He proceeded to tell me he has hopes that this particular drug will help when I am having an episode; the idea being they can intervene during an attack and open up the blood vessels to prevent it from getting to ER status pain levels.

He was talking for a while until I finally said “so what is the drug?”  ” Viagra or Cialis Lauren.  I will send you samples of whatever I have.  Keep them on hand and take one when you are feeling an attack coming on.”

I found this to be hilarious.  I never ever thought I would be taking Viagra!  If it means no trips to the ER for these stomach attacks then sign me up.  Bonus points if I can get some sort of advantages from this “wonder” drug (wink wink)….

So, I’m expecting them in the mail any day now.  Let’s see how this goes….  just one more thing to have in my arsenal when the painful attacks strike out of nowhere.

Boooooo on this weather.

I wake up feeling extremely heavy and achy.  It’s amazing that I could tell what the weather is like most of the time as I lie in bed from the second I open my eyes (just judging by the way I physically feel).  Rainy damp days are not good.

On Saturday when it was nice out I felt like a completely different person!  Well, except when I thought I would faint in a store and I had to take a seat outside a deli on Avenue A for an hour. Not the first time.  It’s pretty much routine for us now:  I feel faint and start seeing white and feel sweaty, I tell Him what’s happening, He goes to get some ginger ale or juice, we sit together and wait for it to pass all the while feeling helpless and scared.  This time at least I found a chair… last month I was on the floor of the AT&T store (where not ONE person helped us, just stared).  I cannot tell you how many sidewalks and floors I’ve been on in the past year or so around Manhattan and very few people have asked if they could help me.  Maybe it’s because I’m in my twenties… they think I’m hungover or high or having a bad trip?

I am so happy I have acupuncture right now.  It brings me some relief and really helps my appetite (not that I need any work on that lately). Only, I don’t think I’ll be walking there today as per usual.

Great story to tell later…

Every Sunday since September makes me smile.

Why?  Because Sunday was the day I would take my Methotrexate (aka poisonous medication).  I would take 8 pills, down the hatch and who knows the damage it’s done.  I made the decision to stop in September even though Dr. D at Columbia really didn’t want me to.  I did not tell him until about two weeks ago that I stopped.  Oops.

But, I trust myself.  I know my body and I woke up one day and just knew it was this med that was actually making me feel WORSE!  So far so good since I’ve been off.  I mean, nothing’s changed except this heavy feeling in my legs and hips went away.  And my liver doesn’t feel so overloaded at the beginning of each week… which is great for its neighbor, my poor stomach.

Every once in a while on a Sunday I pause and think to myself:  did you take your Methotrex today? It is the best best BEST feeling knowing that this nastiness isn’t running through my system anymore.  One down, six more meds to go.

Loving my new doctor.

Saw the osteopath for the second time today and I feel so amazing walking out of there.  I had no clue what Osteopaths did until a week ago, and I am so happy I found one that cares (thanks to another amazing person in my life… more on her (my energy healer) at another time).

Everything he has said so far just makes “sense” to me.  I have a certain theory on what is going on with my body and he seems to just get it —without me having to explain.  Aaah.   I am also comforted by the fact that Osteopathy takes a holistic approach to the problem/ health in general.

On a stomach note:  still eating everything in sight.  Sometimes I like to take myself out to lunch as a treat for going to all of  these  draining appointments.  Bonus points if I am feeling good like I did today.  So, I scared another waitress at Cafe Habana with my oversized order. That’s ok I need to gain some weight…  a construction worker called me Nicole Richie today. I’m not sure if he thought he was complimenting me or not.  Yikes.

I always have a bunch of things in the works that I do not discuss on here until they have some sort of momentum to them.  One being my search for help outside of the US.

It began last year when I turned to a company in Thailand that was working with stem cells for the heart (after consulting mt Cleveland Clinic team we thought it would be best to wait on that technology for now).  More recently I have turned the spotlight to Germany for help in regulating my body!  I am lucky enough to have a friend there who is very interested in getting me better!

I spent most of last week preparing tons of documents to send over to a very compassionate, very smart doctor.  Although it was very hard, I had to sit down and write a complete overview of what has gone on over the years and explain in detail how my body has “wigged out” piece by piece.  It was tough, but I am glad I did it.  Very cathartic.

After I was able to give an overview to the doc in Germany I got the usual “wow this is rare” and he echoed my sentiments when he said he just doesn’t yet understand what the treatment plan is here for me.  Well, there IS NO treatment plan.  Hasn’t been one throughout this entire shitshow.  The doc also said that upon reading my list of medications, treatments and symptoms it didn’t yet make sense to him why I was actually put on some of these meds (my thoughts exactly).  It is only the beginning of my correspondence with Germany but I do have a good feeling about this.  The doc is currently reviewing all of my literature and consulting his colleagues.  What an amazing feeling to have a fresh pair of eyes on my case.

I am put in a position here where all we do is sit and wait for something bad to happen.  The doctors are clueless.  I can’t deal with sitting in one more hospital bed or doctors office as I stare up at blank faces.  A complicated case and they are thrown off.  Who are we giving MD’s to over here?!  A complicated case where a doc has to think out of the box?  Too hard!  Give her steroids!  That should keep her quiet (and completely nutso cookoo can’t-sleep bananas).

Part two of my shame on you America is about (what else) insurance.  I am losing my insurance from my last employer (a cobra that I have paid for a while now) as of March 31st.  Don’t even get me started on the rates that I have been quoted to get an individual plan ($1200 and up per month). Um, hello… I can’t work!  I would love to but I kind of have heart failure amongst many other issues.  So why is it that I am lost in the cracks?  Why is it that a 26 year-old girl who has worked and paid taxes since she is 15 has no options whatsoever at a time like this?  Why is it that I have to constantly plan and research and wonder what will happen?  I am so stressed over this…

Thinking about the past year or so I haven’t been able to count on my country, on our “system” for anything.  My country has failed me.  Any help that I have received has come through friends, friends of friends, alternative healing, and hard work. The only treatments that make me feel better are not acknowledged by our health care system (acupuncture, massage, integrative medicine, etc).  If I wasn’t my own very determined advocate I have no doubt I would be laying in a bed, unable to move.  Hell, if I didn’t go and check myself into Cleveland Clinic last year who knows what could have happened…

I do not feel safe or taken care of here.  I have had to fight every step of the way during a time where I should be comforted and worry free.  This makes me even more determined to put my story out there.

I hope one day that if someone goes through an experience where an illness rocks their world they at least won’t have to fight with insurance companies, dodge “800” phone calls daily, and experience the sinking feeling where you have no faith in your doctors.  I appreciate when someone can admit they “don’t know” the answers but little to nothing has been done on the part of any doctor here to help find me answers. There is no proactive or preventive healthcare.  What a terrible way to be treated.  Being sick or ill in America makes it so much harder than it has to be.

So, my stomach “came back” on Friday.  It woke up after all of the heavy IV painkillers had run there course through my body.  All last week it was a mostly liquid diet for me and I slowly worked in solids with fun things like rice and applesauce. Then, the weekend…

I have been eating non-stop! Makes sense:  I’ve been hungry for the entire month of February!  Yup, this whole stomach issue flared up on February 2nd. I remember because I had to leave a friend’s house since I felt awful. The pain is the worst pain I have ever felt in my life.

February looked like this:  eat one meal one day, then two days of pain and liquids only.  This has resulted in me losing ten pounds!  I was so happy when I had worked myself up to 112 lbs at the end of January now I am back to way-too-bony 102. It’s not cute.

So, needless to say, when you are hungry for a month and you watch tv in America where every commercial is about food, you cannot wait to attack.  There has been no diet this weekend:  I eat what I crave.  Sure, I feel guilty when doing so but I just couldn’t take it anymore!!  Being starving is not a good look for me.  Or for the people around me…

I had TWO big breakfast entrees complete with sweet potato hash browns yesterday at a brunch place on my corner. TWO.  One after the other.  And I liked it.

Dinner time.  Yum.