Medical Networking....Because Being Sick Is Not Enough

Starting over in a new city can be hard when it comes to friends, a routine, feeling like you have a home..... but the hardest way to start over is medically.

To be bluntly honest, The easiest way is going through the ER.  I have so many different conditions, that no single doctor is qualified to attend to all of my various health needs.  So rather than finding a doctor to refer me to the other doctors, checking insurance coverage, coordinating appointments for at least four different docs, usually months in advance, and having to get to and keep track of all of these appointments when I'm already weakened from pain.... the ER has them all available and in network, and they all come to my side when I need them.

I'm need another nerve block.
Fortunately/unfortunately I've done the ER routine in New York City a few years ago, so I still have my Crohn's doctor.  Unfortunately, however, he knows no one who performs nerve blocks and doesn't know anything about the condition my LA pain management doctor identified and was treating....

So here I am, proactive enough to know what I need and when....and here are all the steps it took to maybe possible have a lead:

1.  Called old doctor (if I didn't have him, I'd have to find a primary care to refer me to him, putting me here about two weeks later, if we were moving efficiently)
2. He knows an anesthesiologist.
3. Googled that doctors name.
4. Called the wrong medical practice and got another number that might work for him.
5. Called the right one and gave them insurance information.
6. They checked my benefits and called me back. We scheduled an appointment.
7. And so now I'll be seeing him, in hopes that he performs nerve blocks and if not can link me to someone who does.

He is also out of network, which for now is covered, but come January 1st, I won't be able to see him until I've payed the copay equivalent of $5,000 for his services to then be at least partially covered. Otherwise he'll own every I have.

Years.
Years of self research to know my body this well, but what's taken even longer is knowing how to work the system. Not work it even, just survive in it. I'd be dead if I hadn't. Homeless, in pain, unable to get the care I need, in debt, and eventually dying from lack of medication.

I am so thankful to be working through this when I'm at least somewhat stronger physically than I was even a few months ago.

I also have to call three different medical offices to get copies of records sent to these new doctors. You know, because having the conditions aren't bad enough....but I need to have other doctors to prove that I have them, otherwise I'll be treated as a junky and not given even a milligram of help or respect.

This is why it's easier waiting until my body starts ripping itself into pieces and going to the ER.
Somehow that is easier than this.

I really hope this doesn't start to consume my life again.....I just started feeling like a person.

You Call Me Sick

You think I'm sick?  You know what I am. I'm sick of this year. 

Of losing best friend after friend after friend. 

I complained that I wanted a hand to hold when I weep. 

Now I wish just for someone that I can text.

Everyone that got close to me is gone. 

The love I had for them is calcifying inside of me like; making my heart hard and cold. 

I just wanted to love unconditionally. I don't know how to get over losing so many people in so short a time. 

And the stragglers that are left, I fear infecting.  

Perhaps I am my disease. Not Crohn's or arthritis or asthma or hypoglycemia. 

It's me. 

I am the disturbing one petrifying those who come near.  A Medusa who just wants a hold someone; now too afraid to love anyone new or to chase after the loves I still need. 

It feels like drowning. 

Today once again the cycle began. 

Someone figuratively slapped my wrist for sitting when I needed to. 

Silly me. My brain clearly only functions at standing night.  And because I responded "well I need to do this," HR is now involved. 

They say they're here to help but with the Olympic hurtle track they put between me and working without feeling like an outsider, it feels more like they're trying to discourage me from trying at all. Unless I can get a gold metal in humiliation and tenacity, while not getting paid and eating instant potatoes as my only meal --only then am I allowed to do what my body needs without having to feel fear or shame. 

And the battle never ends. I thought I won this twice before but here they are again, setting he hurtles in front of me. Again the healthy ones with their misplaced concern decide for me that I am sick.

They want me at 100% and ignore my whispers that I never am. Ignore me pleas that I need this to survive. Ignore my tears, my feelings, and my pain: because their voice is louder than mine. 

They don't understand yet they decide what I can't do. I can't sit and still do my job, they say (ignoring the fact that sitting hasn't impaired me from shining at what I do). No, I can't sit.  But if I hurtle my way to the paperwork at the end of the course, suddenly it isn't an issue!  So sitting without a piece of paper: Too sick to function!  Sitting with a piece of paper: Call me Heather Normalton.

It's a flawed system and I'm sick of it.  If I need to sit and it isn't causing problems, let me be. Don't pretend you understand how difficult my life is. Don't even try. Those who do become petrified or flee.

It's a lonely existence. 

And you're right that I'm sick: sick of everything being this hard.