Why is it that everytime I sit in a government office all I want is to shower. I feel like I’m going to catch the bird flu in here… people coughing all over each other, it’s hot, no air circulating. Awesome place to be when you already have a compromised immune system…

Good times for a change
See, the luck I’ve had
Can make a good man
Turn bad

So please please please
Let me, let me, let me
Let me get what I want
This time

Haven’t had a dream in a long time
See, the life I’ve had
Can make a good man bad

So for once in my life
Let me get what I want
Lord knows, it would be the first time
Lord knows, it would be the first time

-The Smiths

For the past two days.  It gets increasingly worse.  First the rib pain (I haven’t been able to wear a bra in a while), then back and neck, and today just overall soreness.  It’s sooo ICKY.

I always try to fight it and I don’t take my painkillers (Tramadol) because, well that’s a whole different post, but I don’t like reaching for meds so often in general.  It’s so gross to wake up in pain, be in pain all day long, and then try and get comfortable to go to bed in pain.  I am keeping so positive because I am really happy right now but even that doesn’t fully cover up the throbbing bones and muscles. Go awayyyy!

The toughest part is when I have chest pains like today.  I cannot help but wonder “is it my heart?’  “am I short of breath?”  “should I go to the cardiologist?”.  All day long, stressed over this.  It’s so hard to ignore these worries when you have a Ticker like mine with issues and then you have constant chest pains!  Maybe I’ll call my cardio tomorrow just to go in and make sure all is ok in there…   I don’t know.

This past Friday I got a call from my Rheumatologist,  Dr. D at Columbia.   The last I had heard from him was two weeks prior when he expained to me that we should try Viagara as an intervention to my terrible stomach attacks.  He explained at that time he would be sending me some in the mail —he would just have to check with my heart failure specialist first (which I did on my own last week).

In the interim I had left a message with his secretary, asking Dr. D to write a letter to my mom’s insurance company to explain that I am “disabled” (I hate that word) and would need to be covered under her plan.

He calls me back as if he was talking to a college buddy:  “Hey Lauren, yea… you wanted a letter to get on your mom’s insurance?  Yea, they’re not gonna take you.  I mean, I wouldn’t take you if I were an insurance company”  (ps I had already gotten the big fat DENY from my mom’s insurance).  Then I asked about the Viagara… “yea, I haven’t spoke to Dr. M, I’ve just been really busy and got caught up.”

The sense of “non -urgency” in his manner and tone disturbed me greatly.  And this is one of the better Rheumatologists I’ve seen!  I like some things about him (he actually LISTENS to me and has helped me since I’ve started seeing him) as opposed to the infamous Dr. S who could care less when I was fainting on the streets of Manhattan “it’s just anxiety Lauren” (sure, Dr. S….  I wonder if he would’ve told a man that if he were complaining about fainting).

I digress.  The point is, where is the concern here Dr. D?  I don’t care if you “got caught up”.  I’m your patient.  I should feel important.  What is wrong with people!?

I haven’t  written in a bit because there is just so much going on (even more than usual).

The good news is that I am feeling really really great this past week.  I have been keeping up with my appointments, and most importantly EATING!  It’s been a solid three weeks or so that I am able to eat now and it makes such a tremendous difference in my life. I even put on some weight!

Last year around this time I was only just getting used to the new addition that had been implanted into my chest.  I was still so scared, unable to get myself out of the house alone for fear I would collapse on the street.  I think about how far I’ve come and I cannot wait for Spring because I can actually experience it this year.

Last Spring I was a true prisoner of my own body.  When I was very sick many people asked why I didn’t just move in with my parents and let them take care of me?  Well, to me that would have been giving up.  I was 26, hadn’t lived “home” in years, and up until that point had been fiercely independent for as long as I can remember.

I stayed where I was at the time (I was living in LIttle Italy), and forced myself to go outside. A little bit each day,  I would walk out the door into the mayhem of Grand Street where Chinatown and Little Italy converge battling to make their claims on the block store by store.  There were herds of tour groups in every language, the frequent and horribly familliar squeals and stilletos of the Sex and the City Tour Bus that would stop on our corner, and wrinkled wise looking Chinese men and women selling fruit and tending to their stores.  It was all of these things that kept me alive.  It was the sound and smells of the city that made me want to get better fast.  Although it was terrifying I needed that anxiety of walking out onto a crowded street filled with people who have no idea what’s going on with you to put me in place!  On the days I couldn’t get out of bed (and there were too many), the simple knowledge of what was just outside my door kept me hopeful.  The energy of the city pumps through my body and it has been my guru in this journey to healing myself.

I came across this wonderful collection the New York Times has started.  It is called One in 8 Million, and tells a different story of a New Yorker weekly.  It is so well done and everytime I visit it affirms my wild love for this city of mine.

Thank you, New York City. Even though you are constantly changing on the outside,  I can say for sure that your majestic spirit still exists and it is all around us.

Today was a little rough because it was damp and rainy which = bad muscle and joint pain.   It took me about two hours to get out of bed.  I opened my eyes and immediately said “Ouch”.  The best way to describe the feeling is like I went to the gym for a full body workout for like twelve hours yesterday.  That, or like I got beat up in my sleep.  As I lie there I actually feel like something is holding me down, pushing my shoulders and thighs into the bed.

After about another two hours of discomfort I took a painkiller (thank you Tramadol).  It usually takes awhile to kick in for me but it lasts a long time.  I am so so happy I took it because it’s helped me actually get stuff done today:  I am still manning insurance central, and catching up on bills and medical stuff but at least I’m a bit happier and comfortable thanks to the pain meds.  Sometimes you just gotta do it.

No progress on the insurance.  I am trying to get onto my mom’s now but there is a long process considering I haven’t lived with her as a dependent for years and years.  It involves a lot of phone calls to my doctors explaining my condition, scanning tests to fax over to the insurance company, forms, phone calls and more phone calls.

I hope it’s sunny tomorrow. I could use some sunshine!

Another morning on the phone with New York Sate Department of Health and every single program they offer for insurance (HealthyNY, FamilyHealthPlus, Medicare, Medicaid, etc).

What have I learned?  I am not eligible for ANYTHING from the state.

I fall in the middle.  I “just miss” everything because I made too much money when I worked (which is a huge joke).  I don’t qualify for help from one because I am not absolutely destitute and I don’t qualify for another because I haven’t worked in the past 12 months.  WTF?

I cannot even pay for health insurance if I wanted (assuming I could afford the $1500 individual plan that Aetna offers, $2500 for GHI) due to my “pre-existing condition”.  I despise that term by the way.

So, what does someone like me do?  I can’t help but feel like we do not matter.  Where do I stand in the government’s eyes?  Don’t we deserve help, too? Especially if your life completely changes because one day you’re in an ER and you’re told your heart is pumping at 15%!!!

Deep breaths Lauren….