This is My Best Life - And Being Sick is STILL BULLSHIT

Got a call today from a dear friend. She's a healthy friend, a true healer, a nurturer. Not sure why I feel so TRUSTING of her... like she'll never go away. But she didn't. I told her so many things that are going on... all this new medical news... crashing over me. She just listened - bearing witness, reminding me that a good friend will do that. Reminding me that I CAN TAKE THIS-- and that no matter what-- I DON'T NEED PEOPLE IN MY LIFE WHO CANNOT.

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...

Firing Doctor Shitheel

I'm torn - part of me wants to completely melt down and part of me wants to rationally discuss firing a doctor who has lost your trust.

The melting down person wants to vent because it has been a rough week... and my endo has been walking that fine line of schmuck-ti-tude for the last few.. and I THOUGHT we had made a breakthrough last visit.... but today he missed a phone consult with me... just missed it. I paid for it- he missed it. It happens... but I called them. He then proceeded to give me NOTHING but shit news and horrific things - and "this could be doctor talk med speak more doctor talk fancy names for tests I've never heard of PET scan CT scan BUT I WANT TO WAIT AND DO MORE TESTS" (because I'm not you- b/c I have no idea what chemo feels like??? b/c I AM SCHMUCK??? -- b/c I'm a shitty paternalistic doctor??? BECAUSE I'VE LOST YOUR TRUST???)

MEANWHILE-- I'm upset. This is NOT what I was expecting? I was expecting bad news- but not REALLY bad news? I started crying. Yes I did. OK. I'm not a fucking machine. I can suck it up and be stoic for only so long. I WANT some good fucking news ok. Or some neutral news.

I cried. And he said, "You're being mighty cranky today."

YES. HE. DID.

I said to him, "And you're being mighty heartless given the news you're handing me."

He said, "I don't have to take that from you." And I said, "NEITHER DO I."

We are at impasse.

I need a new endo.

I wish it had come sooner. I wish I had not tried so hard to make a relationship with him.... I thought he was trying to be a good doctor... Instead - I guess he was covering over burnout and shitheel-ness.

Onward. I have to call for some referrals to some good endo's here in Ohio tomorrow. I don't know any up here. Maybe this will help me get to the bottom of it. I'm also going to have all my medical charts sent up here.

IT IS TIME.

Oh and - firing your doctor is pretty easy. All you say is, "You don't have to take your bad day out on me - You get PAID to do YOUR JOB but it should be your calling anyway. I no longer TRUST YOU."

Meanwhile - I will tell my new endo that it was simply too difficult to manage having a specialist out of state when I'm dealing with an ongoing health issue... I don't want to have a "reputation" as a difficult patient. It is all in how you present yourself. I want the chance to build a strong relationship with a new doctor. Doctor shopping = bad. Firing a jerk = necessary.

I am looking forward to this particular process being OVER.

My Little Grey Man Cat

My little grey cat is gone. I am in mourning. He took my laugh with him. And all my snuggles. God may not be dead - but my heart is right now.

The Social Contract - A Reply

I am responding mostly to this blog post on social contracts by RichmondDoc: I have included links to the other 2 blogs I have made comments on because they have to do with doctors discussing "patient responsibility" but have not mentioned either social structure NOR have they discussed doctor responsibilities or civic duty to help or make things better....

http://richmonddoc.blogspot.com/2010/09/social-contract.html

http://33charts.com/2010/09/heavies-to-the-left.html

http://drjohnm.blogspot.com/2010/09/lesson-from-checkout.html

POINTS OF NOTE:

Here in the US (as in many parts of the world)

1) WE HAVE UNEQUAL ACCESS TO LIFE CHANCES

2) Culturally we do one thing and say another... that is we blame people who do not have the equal access and pretend it is up to them to secure footing instead of all chipping in to make things right.

3) When we all chip in things work better and we collectively feel good.

4) SOCIAL STRUCTURES IMPEDE PROGRESS TO EQUALITY.

5) Inequality is rampant and anyone who says otherwise is part of the problem.

6) Doctors and medicine are part of THIS CULTURE and CREATED MEDICINE.

7) This culture is as broken as the people we try to fix.... it is a loop... WE NEED TO FIND A WAY TO STOP THE ENDLESS BROKEN CYCLE.-- WE NEED A SOLUTION.

I agree heartily with the notion of duty, responsibility, giving our best selves to each other. I am a proponent of living our best lives.

Research indicates if you take a poor child and put them into a wealthy or middle class household/neighborhood they eat fine, they do fine, they act just like you would expect. And similarly, if you take away the positive circumstances and hope and leave someone with nothing, they act just like we know...

WHAT YOU NEED STRUCTURALLY FOR SUCCESSFUL PEOPLE:

School systems, housing, jobs, healthcare, income, education, access to good food, ability and time to prepare good food, childcare, stress reduction, exercise, dental care, animal care, elder care, job training, relationship help, diversity training, and all the many different things that are necessary but I may be forgetting because I'm blogging...

Simple positive things that most people forget but are nice and rich people get them ALL THE TIME -- massages, lovely and beautiful things we take for granted - like art treks, nature walks, pools, massages, tea time, sports lessons, foreign language lessons, travel abroad, VACATIONS, cultural awareness.... -- where do things like this come in? When does this happen? How do we schedule it economically or time wise? It is important yes-- how do we schedule it in to enhance people?

Too often I have seen JUDGING of individuals rather than SOLUTIONS offered or given.

I have used obesity as a main thing but we could just as easily not use illness... I could just as easily talk about ANY INEQUALITY. However, HEALTH is a primary indicator of a QUALITY OF LIFE. Quality of life is an indicator of how well we do as a nation - how well we do at providing for each other. We in the U.S. are a FIRST WORLD NATION. Highly educated and with TOP NOTCH HEALTH CARE. Yet - it is only given to certain individuals who can pay for it.

The poor or uninsured use ER's or have inferior quality access to healthcare. They have providers who do not care or will not grant them the same quality. They use state or county clinics and are farmed like animals. The health providers who work there might have hearts of platinum- but the rules and regulations behind those places ensure that the most old and pathetic stay in charge while the people who WANT to be doing the good work are squelched.

I have heard too many stories to think other wise. I have seen too many monstrosities. I have seen too many excellent doctors who care QUIT SUCH JOBS because nothing could be done about the incompetent fucks who should have retired years ago were still trying to kill off their patients. I have been a patient for too long to believe that I am anything but better off without the KICK ASS INSURANCE upon which I pay my ENORMOUS PREMIUMS and live in fear the day it goes away...

Back to this social contract-- we have a "social contract" by which physicians are supposedly living. But it cannot work - because society is living in with multiple different broken contracts depending on which class or strata we live in (rich, poor, middle class, religiously mandated, racially profiled). Some people get the good ones and some get the jacked ones. And any given day some people will believe the social contract being positively fulfilled and some will feel cheated.

I'm saying -- YES- we all have a duty- a humanity to serve... but the social contract between human life is precious and powerful. We are all alive. We are all patients. We are all together in this. But the inequality and social structures have jacked our chances to have a REAL vialbe social contract that works each time. And that makes everyone feel cheated...

There is no such thing as a better or worse profession... or one MORE or LESS noble... yet SERVING EACH OTHER and BLESSING EACH OTHER and TAKING CARE OF EACH OTHER is the ONLY THING we can do. We forget that. When we start taking care of each other - maybe we'll fix the system from the inside out. MAYBE. Until then the repeating broken loop will continue and nothing will ever be righted.

Stop feeling taken advantage of and start pushing up our sleeves and working our best. There will always be harder workers and lazier sorts, sicker and healthier. But until we stop looking at who does what and who gets credit and start digging in for the SOLUTION - nothing will ever be fixed.

We deserve to live in a better society. We deserve to live our best lives. If we all agree on JUST ONE SOCIAL CONTRACT it will be a good start.

A Post of Gratitude

I am often astounded and amazed by the love and compassion of my friends. You amaze me. You do.

Death is all around us. It is. Illness too. And pain. Yet you continue to bless and inspire me.

Thank you for holding me so much during this awful week. Thank you for giving me so many words of love and compassion when I needed you the most.

I feel you so much right now. Some of you are hurting deeply. Some of you are tired. Some of you are weary from the fight. Some need support right now. I want to scoop so many of you up and hold you so tightly. Others I wish I could tell SHUT THE FUCK UP AND KEEP FIGHTING FOR YOURSELF- YOU'RE BEING FAR TOO SOFT -- YOU OWE THIS TO YOURSELF! Still others I want to congratulate and coo over. You have won so many battles.

Some of you amaze me with your beauty, your kindness, your compassion. I'm so awestruck at you. TRULY AWESTRUCK.

And yes- some of you have taken the time to reach out to me and share your stories-- to tell me your pain, your joys, to GIVE ME YOU. And I am grateful. When I have been down you have said to me, "I will keep you -- I see you too Melissa -- I am your friend, your family-- I will you hold you too." AND THIS HAS MEANT THE WORLD TO ME.

I am forever grateful. I have needed this. It has sustained me. I am ready to go on now. I am blessed by you. Grateful for you. IT IS TIME. We have work to do. LET US DO IT.

I adore you. Thank you for being in my life.

On Fire - I Knew- I Knew

What has always struck me- no matter how often this happens - I KNOW what is happening inside my body.

I will tell a doctor - "This body part is sick, this organ is failing, this is happening." I know it irritates them because THEY ARE THE SPECIALIST - BUT I live inside my body. I KNOW MY BODY. I see it, I dream it, I live it, I know it. I taste it. I know my fucking body.

Last time I was here I told my endo what was happening - in 4 sentences I had written down on a post-it note. He didn't look at me. He ignored me. I crushed me. My blood came back -and today- he was kind, empathetic, sweet, WITH ME. He looked into my eyes. He talked with me. He joked about not listening last time and even plugged his ears and said, "I am afraid that people spend the better part of our time NOT LISTENING TO YOU dont we."

I just looked at him... I smiled but it was hard because I knew. I KNEW - he found not just one or two BUT ALL FOUR.

I mean REALLY. Those were just FEARS. I don't want them. I DON'T WANT THEM.

He is refusing to treat me for any weight or sugar or even put me on metformin because those are secondary and if we correct for the primary and master issues the rest will settle. I get it. I also get a sense of relief that I am right - because I am always right. I also get a sense of failure, dread, pain, and BEING OVER IT. How much?

I pulled over today and put my head down. I SURRENDER. I DO NOT WISH TO BE SICK and -- I'VE GOT IT DOWN. I am already doing it-- I don't need ANY MORE ILLNESSES. Really. I'm done. It is worse when a distant doctor becomes nicer because they realise that NOW IS IT. I was already doing team -- and now he is too. I GET IT-- LET'S GO. I get on the general level HOW IT IS DONE. I've been doing it. I know how to show up- be my own champion - I GET IT.

But really?
Really?

Again?
This is done.
I'm over it.

I just heard a friend today tell me the same thing. She's tired. I held her through it. But I am saying the same thing. At some point- ENOUGH.
Enough.

Enough.

There is a voice whispering to me -"All you have to do is stop your treatments and it will all be over in no time flat." And a louder voice - more resiliant saying, "NO- YOU ARE HERE FOR A PURPOSE- YOUR RESPONSIBILITY IS TO LIVE YOUR BEST LIFE- NOW- SHOW UP- LIVE WELL. THIS IS ALMOST OVER."

I can do this. I am in my liminal phase. It feels uncomfortable. I will make it happen. All I have to say is -- I DON'T DO ANYTHING IN A SMALL WAY - not healthy, not wealthy, no poverty, no sickness - not happy, not love, and not fucking healing. I WILL HEAL. I WILL.

But right now- is 2 more days- 2-3 visits... I must keep going. Full days.. more news... more repeats... I need to keep going. But today was "the day." I saw it coming. I knew it. I KNEW IT.

I just wish I wasn't so shocked when other people confirm my own knowing. I'm always right. Why then did I just want him to look at me and say, "You're the picture of health - stop whining." I'll tell you why-- because it would have been one less thing.... one. less. thing.

Healing is a process - and part of it is that sometimes when you're walking through the fire you're still burning as you go.