I've been down this road. I've lost hundreds of people because of illness. And I've gained hundreds more. It is why I am a public advocate. We can do illness well. We can live our best life. But there is a place for honesty and realness and living out loud. There is a place for fear and being upset with more news. There is a place for sharing our lives. I DON'T HAVE TO DO THIS ALONE. I don't.
Yesterday I saw me new doc (I've only seen her once before- but my family uses her- so it is a family relationship). She is not happy with the news either. She was like, "Oh - I don't want to send you to any private endos here - I want to send you to OSU... I HATE going to teaching schools. I never feel a sense of RELATIONSHIP there. I always feel so CLINICAL- like a number. I have 11 specialists. With each of them I have taken the time to BUILD A RELATIONSHIP. I feel like my doctors (all but my schmendo) CARE ABOUT ME. Meanwhile -- I have to deal with all this stuff...
And my doc said, "What we NEED is someone who KNOWS YOUR HEALTH INSIDE AND OUT." And I looked at her and said, "That would be ME. Every specialist knows SOMETHING about me- but only what THEY specialize in. But WHO wants to know ALL OF ME? It is overwhelming."
And she said, "You NEVER want to be the INTERESTING PATIENT Melissa." And I said, "I hate this. I struggle against it. I have fought my whole life not to be sick - not to be noticed except when I am successful. I know how much people HATE chronically ill people. I know how much the SICK ARE HATED."
"Right now there is a tidal wave crashing over me. I know if I hag on - it will recede. I will make it. I will."
She just sat there. Neither of us has any answers. I am so stupidly over this. There are so many complications... it is probably simple but it doesn't feel like it. I have to go off x med for x reason for x amount of time. But it complicates y disease. Which in turn flares z. The move and the death of my cat then caused more stress- flaring up more... it is quite simple... and yet-- complex in it is own way.
And I HAVE NO ADVOCATES BUT ME. No one cares about me MEDICALLY. I am on my own. I always have been. I pull it together.
One friend said, "God- you are so stoic." And I said "yes - I must be. How else will I get anyone to listen to me. I CANNOT BE A CRAZY WOMAN. They write off crying crazy women."
Even yesterday- my doctor yelled at me b/c I had a negative interaction w/ a PT and chose to go to a different one. I explained what happened and she backed down... but I DO NOT WISH to be misjudged so soon in our relationship. And WHAT A FUCKING SMALL DOWN-- where a PT can come and tattle on me - b/c he was mad?? HE WAS A DICK. FUCK HIM. I don't HAVE to go to him. She didn't even write the rx. FUCK. HIM. Really.
She actually apologized for jumping to conclusions. And I just chilled. But my heart was so angry that I even needed to deal with multiple layers of small Ohio town bullshit to get my healthcare served. It made me miss Atlanta more. I MISS ATLANTA if only bc if you chose not to go to PT w/ soeone - NO ONE GIVES A FUCK. You just move on. The PT doesn't walk next door and hassle your doc about it.
And also - b/c I had a 12 year relationship w/ my doctor... WHO HUGGED ME. I miss being hugged by people who LIKE ME. Even if I don't think they understand all my healthcare stuff. She at least knew good docs and she knew where I could go and who I could trust. And-- she knew I'm partial to non-assholes. Which sounds funny - but old white hubris men DO NOT WORK FOR ME. And she is a black woman in the US WITH CHILDREN... so SHE GOT IT. She had to make her way through med school WITH ALL THE HUBRIS it involved... there was a knowing there when I said, "Don't send me to any assholes"-- she got it. I clicked with everyone she referred me to -- even though I never needed a referral on my insurance -- I was never RUNNING BLIND.
Here in Ohio -- I'm being sent to OSU... I'll have to keep an open mind I suppose... Hopefully there will be docs with hearts and not clinical hubris... we'll see.
Besides... I'm tired. This is part of it. Where you feel like people will abandon you. THIS IS PART OF BEING CHRONICALLY ILL. Where more diagnoses come in - when you don't want them...
I never dreamed this would be my life. Most of us didn't. I struggle with jealousy for people who either die or have re-entry -- because they can MOVE ON. I even struggle with people who only have ONE DISEASE... b/c they can control it... I know how unfair that seems. One friend who is a doc said, "Melissa - stop calling yourself a zebra- all zebras have stripes- you're like a purple zebra with a mohawk." That cracked me up... but it also made me secretly sad. I DON'T WANT TO BE THIS.
Deep in my heart - if you pull away the loud crazy Melissa- the one who gets on stage or does loud crazy things... there is the woman who is very calm and almost boring. There is one who can even be shy. Deep in my heart - there is a woman who likes to garden and putter and be still. She DOES NOT want to be a purple zebra with many stripes and a mohawk. How hard it is to swallow back anger at god for giving this to me. I DID NOT WANT IT OR ASK FOR IT. And quite frankly - I don't know what to do with it now.
I'm angry. I'm overwhelmed. And I feel afraid. THIS IS BULLSHIT. And yet-- I carry on anyway...