Update on the Surgeon - LAST WORD

I called back my surgeon and left a message with his front desk. I said, "Hi, can you leave a message for Dr. M?"

She took my name and I told her to take the message WORD FOR WORD. Then I told her that he didn't need to call me back.

"Please tell him that his surgery on Friday with me is going to be HIS MOST SUCCESSFUL spincterotomy he has ever performed. And I am going to be his best healing patient he has ever seen. and then write - CONFETTI spell it out. c -o- n-f-e-t-t-i.
Got it? then make little confetti marks all around the word. (she giggles). Then write. See you on Friday. ROCK ON. "

She laughs.

I say - "Can you give him this message for me? I forgot to tell him that last stuff." She said she would. I thanked her. She made sure that I was pre-registered and all my blood work was done. I said yes yes yes- I'm a pro. She laughed again.

All good.

There. This is going to be OK. I have needed this surgery since April. I wouldn't have started to go septic if I had gotten it. It is time. It is time. I need to stop being a scardy cat. I know there are risks. I know too that I am afraid - but I now need to use my FEAR as ENERGY FOR ME.

A nurse friend of mine said, "If you know your enemies you know who to fight. So you can send all your healing thoughts to what your risks are."

Since my surgeon was SO HAPPY to continually drill them into my head - they are FRESH - I can now REALLY REALLY DRILL MY GOOD ENERGY INTO THEM. I can REALLY KNOW that this is RIGHT. I can know too - that if the surgery has a less than ideal outcome - that I did my best to avoid dying of spesis at the age of 36. And I will know that it was not a rushed surgery without thought. I am being thoughtful and contemplative.

Meanwhile - I am focusing on gearing up my HEALTHY CELLS TO FIGHT. I am gearing up my IMMUNITY to take care of infection. I am gearing up to continue to heal not suffer with pain - and feel sensation without agony. THIS IS HOW THIS SURGERY IS SUCCESSFUL.

I have the result I hope for. A fully functioning and fully healed spincter - free of fisures - free of puss - free of sepsis. I can enjoy pooping, sexuality- and my LIFE again. I can sit anywhere. I can poop anywhere. I can live free of infection.

Yes. YES. See. I am visualizing this into happening.

I am glad I called back and gave my last word. I think it is perfectly snarky and perfectly me and HILARIOUS. And I hope it shows my trust in him b/c HOLY SHIT is he a fucking scared guy. I've never seen a surgeon more openly scared. He's young AND he's honest. And - I TRUST HIM because he will not lie. So neither will his hands.

Meanwhile -- I am feeling nervous - but I am using this energy FOR ME - FOR MY HIGHEST GOOD. This surgery has been recommended by multiple doctors. (Even though it carries risks). Right. It is time.
x

My Latest Article - Read it!

How to have and establish good doctor patient relationships!
http://dearthyroid.org/chronic-snarkopolist-the-snarkopolist-way-strategies-for-positive-doctor-patient-relationships/

Of Surgeons and Such

Well - fuckity fuck. My surgeon called me back today to discuss my impending surgery. The conversation DID NOT GO WELL. Instead of talking about my desires to use positive visualizations for the outcome - (since the LAST FEW MONTHS OUTCOMES TO HEAL WITHOUT SURGERY HAVE NOT GONE WELL) - he just freaked out and said, "This isn't my most positive."
Then he went on to tell me all the PROBLEMS that can result.

I KNOW these. We've been over them. I'm fucking terrified.

I was like, "Doctor- we've been over this. I DON'T WANT THIS SURGERY. It has become necessary if I want to have any kind of life. So - PLEASE - lie to me. I need to have help visualizing the way I can usually do it. This is my kryptonite. I just want you to tell me that I will do well - I just want someone to TELL ME THAT IT WILL GO WLL. MY BRAIN NEEDS TO HEAR IT. I WANT LIED TO."

And he said, "No- I won't do that. I won't lie." And he went on to REPEAT all the shitty things and outcomes that could happen. Again.

And I said. "I know all these things. You're not working with me."

And he said, "Do I think you'll heal yes but" And I stopped him and said, "THERE - THAT'S IT -- ALL I WANT TO HEAR."

he said, "I have to go."

And he hung up.

My affirmation for this surgery.

It is in my highest good.
I heal WELL and easily and quickly.
My body does well post surgically.
My surgeon is skilled at what he does. BECAUSE he is unable to lie to me - his hands are unable to lie - and my body has a fabulous post-surgical result.
I recover quickly and free of pain.
I am restored to normal bodily functioning.
I live well.
I live in joy.
THIS SURGERY IS IN MY HIGHEST GOOD.
All is well in my world.


I am visualizing my cornholer healing well. I am visualizing myself doing all I need to do to care for it post-surgically. And... lawd - that is NOT the last time I will ask a surgeon to help me visualize because some are quite open to it. I think I might have even NEEDED him to do this for me to shake me out of my kryptonite rut so I can do it for myself. I am sorry my body has reacted this way. It has. And I can still HEAL FROM THIS. I can. Post-surgical success awaits me. Friday.

What Packing Means

As I write this my parents are packing my research into boxes. I am not helping much because of my recent ab surgery I'm more of a layabout - pointing out the important research and books from the stuff that can be thrown away.

And mostly - I cry. I cry every 10 minutes. I don't want to move. I want to stay here in Atlanta and teach and be a professor and love my life. I want to be an improvisor on the weekends and do standup and have friends and a life.

I don't want to be sick. I don't want surgeries or blood tests. I don't want to have autoimmune disorders or take fistfuls of pills. I don't want to be an ungrateful daughter who cries as her parents move her into their home.

I am just so sad. I am so frustrated.

This feels like my divorce - as my friends moved me out of MY HOME - MY BEAUTIFUL HOME. I am reliving the move -- I didn't want to move then either - it was all my beautiful things and from a man I was in love with.

Now - it is MY CITY - MY BEAUTIFUL CITY- my friends, my life- my career- EVERYTHING IS MINE and I am moving to Ohio - a place I escaped from LONG AGO.

I keep telling myself I am taking a healing sabbatical - to bore myself into remission. I am taking a writing sabbatical. I will get to know my family and love them. I am a grateful daughter. I will be loved and love and reconnect. BUT I DO'NT WANT TO MOVE.

I want my life. MY LIFE. MY LIFE.

I want to have a job and be creative and do research and be productive and teach and love. I want MY LIFE. MY LIFE MY LIFE. MY LIFE.

SICKNESS HAS STOLEN MY LIFE. MYLIFE MYLIFE MYLIFE.

And I am so angry and so sad.

I want to say I have no words for the pain- but they are here - pouring out. So obviously I have words.

More words than I can express. They are all over - bleeding all over.

I am wounded deeper than I can say. AND THIS is just the first wave. My mother is only taking my "important stuff" my nice clothes, my professional research, my scholarly things, my plants- the things she can take in her suv. And I am being a horrible ingrate. And I am crying as everything is put into a box.

Because the blow to my body and my heart is more than I can bear. I can no longer lie. I can no longer pretend that it will all go away and that I will miraculously heal and that I will wake up and bound out of bed and tell my father to go home and that I am HEALED!!! I am alll better!!!!!! The lupus and the hashimotos and everything is in remission!!!! I'M FINE!!!

And I will dash out my books and my research and get all my R&R's (revise and resubmits - I have a horrific number that are undone- a terrible number really- an awful amount) and get a wonderful tenure track job and wake up every day and jog 4 miles and eat organics and my body will NEVER BETRAY ME AGAIN. And every day I will be GRATEFUL and mediate for 20 minutes.

And I'll never take another medication. And if I have indigestion- I'll have some ginger tea - and if I cannot sleep I'll have some chamomile tea - and if my body aches - I'll have some massage - and if I am sad I'll call a friend and cry.

BUT THOSE DAYS ARE GONE.

And I know it.

I know it. I know this is my HEALING TIME. THIS MOVE IS TEMPORARY. No one is forcing me. This is a gift. This is a gift I am being given.

I should be GRATEFUL. Why the tears? Why?

Why the pain?

Oh how it hurts. How my life hurts so deeply right now. The losses I have sustained go unstated so often. I cannot tell you anymore.

I have run out of words.

I will do this. I will do this thing. I will make this my writing sabbatical. I will heal. I will possibly go into remission and grow closer to my family and learn more gratitude and BE GRATEFUL that I have a place to go. Because - I am out of money. I NEED THEIR HELP. I will use this time to write and revise and resubmit and get published and finish things up and dissertate and be DONE with all my chapters of all the past things I have been back burnering.

it is time.

This hurts. Like many endings and beginnings - even the temporary pauses. This hurts. I am hurting from deep inside my soul - where it echoes. And it is raising old ghosts from old pains and old moves and old losses. And these tears - perhaps - they will heal even as they come unbidden.

Stop Being Silent- But Doing It With Compassion

Today the pill cam nurse told me that when she had lymphoma her husband stuck by her (a mercy) but her friends and even the other nurses though that perhaps she was using her sickness for attention. OHMYGOD- HOW MANY TIMES HAVE I HEARD THIS!!!

I'm fucking hilarious - I'm brilliant - I'm an attention whore - I can get attention on stage - with my writing - and in the classroom -- I DON'T NEED DISEASES TO GET ATTENTION. And besides - diseases are the ONE WAY TO MAKE PEOPLE GO AWAY. They don't get you attention they get you IGNORED- SHUNNED. It's so fucked up.

So - here's the deal..

This nurse, "Dot" told me that when she had cancer most people just said NOTHING to her because they didn't know what to say. And she just ignored them ignoring her - she just went on with her life. And when she went into remission they kept ignoring her and she kept ignoring them and she's become a solitary woman because of it - with just her husband and what life she's made. And I welled up tears - OF ANGER FOR HER.

And she told me she was VERY BITTER for a VERY LONG TIME over it. And I said "yes of course - of course you were" - I"m angry for you now." And she brought back tissues and I blew my nose and we hugged. And I said, "I'm so angry that people judged your illness as having to do with a choice that you had or didn't have. I'm sorry that people ignored you. I'm SO ANGRY ON YOUR BEHALF.

And she told me that she hated it when people would say that "God won't give you anything that you can't handle but those were always the healthy people." And I said, "Yes- I KNOW- always the healthy people who have NO IDEA what you're going through - they want to use their vapid clueless ideas and their little sayings but they don't want to GET TO KNOW YOU or feel you OR BE CLOSE TO YOU. They don't want to CARE about you."

And I was even more upset and raw. And she said that she was very bitter for a long time for that too. And I told her that I was still going through this - where I have my sick friends and my healthy friends - and I have to decide each day- which friends I decide to share with -- and I have my friends in the middle, my "care taker friends" who are not "sick" but they have been there with the sick and dying and so they KNOW what it is like to be on the outside - and so I afford them more trust than I would others... and how I am trying to be more LOUD and VOCAL because in my heart I am a teacher. And how I am trying to teach people that it is OK TO HAVE COMPASSION.

I even tell my surgeon - "close your eyes and imagine that I am your wife your mother your daughter- your advice makes a difference now, doesn't it"... and he said, "yes- it does." I'm trying to have compassion for my healthy friends- but still TAKE THE TIME TO GET THEM TO KNOW ME.

My brother - who has stopped calling me - stopped TALKING TO ME. He treats me now like an outcast- like his mother in law - like someone who no longer has a brain or a LIFE -- I am now just "the sick" - someone who doesn't need to be TALKED TO AND TALKED WITH -but "handled." He might spend a month fixing up a room for me - but I haven't TALKED WITH HIM FOR SIX MONTHS. It is as though I am now invisible.

And I realize that it is because to him - I have become that space where we relegate sick people -- annoyances - scary- we put them someplace where they do not pollute us... and I am trying so hard to go there and have compassion for my sick friends and LOVE THEM and give them what they want... and I am trying to go to my healthy friends and educate them too -- NO - I WILL BE SICK IN YOUR FUCKING FACE AND I DON'T OWE YOU SILENCE OR YOUR PREFERRED WAY OF BEING.

I don't know how else to do it. And I'm afraid a great deal. And I'm alone. And I hate this. And I don't like my life. And I TRY to live in gratitude and I do the very best I know how. And I'm living with the best amount amount of self-advocate and self-love I know how. I am doing my best.

I guess this is my job. Period. While I am here on this planet I am supposed to live the best I know how -full of love and with full on emotion. If a nurse makes me cry on her behalf - I cry. If someone makes me happy - I laugh. I will LIVE THIS LIFE - FULLY. HERE. PRESENT. This is my job.

I am living in it.

Look at my poor war riddled spy cam tummy

http://www.youtube.com/watch?v=JQncQWi9yCQ

The Trick To No Bitterness

Tonight was a rough night. I'm getting over the surgery - the emotional part of it and the physical part. I'm able to take some short walks and even go to my neuropsychologist where we talk about life and how to deal with illness and cognitive challenges in getting my dissertation done.

I received notice that I'll be getting a VERY SMALL STIPEND for my dissertation next year. Not enough to live. So small it puts all the previous years in the crapper. I feel so grateful that this is the year I'm moving home. If I had held out for this amount I would have had to go on the dole long before now.

Yep- these times are rough -but ouch. It is deflating - horrifyingly deflating for me. I don't know what to do sometimes with the illnesses I have. And then some "well meaning people" and some NOT SO WELL MEANING PEOPLE come along and say bullshit - like, "illness is just an imbalance in your body- it is just a message trying to create and restore wholeness to your being."

And other people who say that the medical industry is just trying to create wealth on the medicines that I take (and some of my friends take. Now - I don't take some of my medications for their intended purposes. I don't HAVE say fibromyalgia or chronic fatigue syndrome-- I have other illnesses... but the illnesses I have are auto-immune and hard enough to deal with. They are NOT VISIBLE TO THE NAKED EYE and so I have a sense of feeling angry on behalf of men and women who DO have those illnesses. I have enough friends who do have fibro or CFS -they DO have a hard time of it. They ARE tired they DO feel pain. I get it.

Now-- one thing that they often do that I do not do -- they spend a large amount of their time discussing their pain... and well... I just don't anymore. I just CAN'T ANYMORE. I have come to the term that I will live in a certain degree of pain for the rest of my life. I just will. And it will come from my spine where it has stenosis, and my kidneys where they are slowly failing, and from other areas of my body where the auto-immunity is kicking me... like right now - I'm dealing with the crohn's - and YES IT FUCKING HURTS to have terrible constipation and then awful diarrhea and cramping. I just.. I generally don't mention my pain levels as much as my friends. Or the traveling neuropathic pain or that my eyesight gets blurry or I have "visual impairments" probably from the CNS hit that lupus gives me...

Often because I don't know WHAT IT IS FROM... but also - I just don't feel like talking about it. Sometimes I will mention the pain - but mostly I don't. I'll just say, "rough pain day" and leave it at that. But other times I notice that others feel a sense of camaraderie discussing their pain. And I give that to them. I will give them hugs and love and support if that is what they need. But I DON'T FEEL BETTER telling people about my pain - because it is so constant and so there with me. I know I live in constant chronic high level pain that will never go away.

I don't even medicate it unless it is acute post-surgical anymore. I just don't bother. I JUST DON'T BOTHER.

And so - I sometimes feel... lost in all the illnesses. Like - I'm not talking the right sickness languages. Because I don't FEEL LIKE going down that road or because if I let myself crack open that window all I will ever do is fucking whine about it. And I don't feel like it. It is NOT because I am "better" than others - it is because I have been DOIGN THIS LONGER. FAR FAR LONGER than most.

I'm used to this. I'm past the part where it gives you depression. I'm past the part where it brings you down. I'm into the LET'S GET ON WITH IT AND GET SOMETHING DONE ABOUT IT STAGE.

And yet-- there is this part of me that just wants to crumple up and be held. I never wanted any of it. I feel weak. I am NOT A WARRIOR. I want to be held and loved and scooped up and adored. I want someone to treasure me and tell me that it is not my fault. And trace their finger over my scars and say I'm so sorry this is here and this and this and this.

Right now I'm trying to write a funny article for my weekly column and I cannot find my humor. It just isn't there. And I'm trying to poop- but it isn't coming out. And I'm feeling so so lonely - and I want held - just held for a night - and told that I'm OK.

And that my life IS OK. And that things will work themselves out. I DON'T FEEL CHARMING OR FUNNY OR WITTY.

I feel alone and tired. I'm tired of negative people who are constantly finding fault and judgement with how other people cope. I try so hard to give space for other people's pain and their process. If you are sad- I try to give you space for that. If you are hurting I try to give you space for that. I try to encourage people in the best way I know how. And yet- I finally FINALLY have to draw some boundaries around me and say- NO MORE- MELISSA DESERVES TO HAVE SOME JOY IN HER LIFE TOO. Melissa needs joy.

I need some joy too.

We all are in pain - but we all also have room for joy. We are more than crisis. We are also all able to have love and happiness and joy.

I don't want this. But I MUST DO THIS. And so I am. I am doing the best I know how. It rakes me with tears sometimes - frustrated - that I am not on stage or in the classroom - that I am not being more productive in other ways. But right now - THIS IS WHAT I HAVE.

I'm doing the best I can. And I'm allowed to want to the safety of arms and love and snuggles and words that connect and hold me. I am allowed to want those things - no matter how silly or trifling they may seem. I am allowed to miss a life I no longer have. Because I do. I sit here and take myself to bed, and pet the cat, and love with the most open heart I can and I DO NOT RESENT IT. I LOVE EVERYONE THE BEST I KNOW HOW and I do not resent it not one bit.

But I miss love and being loved. I really do. It makes me lonely. All those times when it would be just a little easier to have someone touch me gently or cuddle me tightly - all those times when big arms holding me would ease the pain a bit - RIGHT NOW - that would work. And I don't have it - and in not having it - I miss it. I'm writing my loss to you. Because I can. It is my loss and it deserves my voice too.

Yet one more loss. Not just friends or jobs or money or cities or identities - but lovers and independence and the sheer knowledge that someone will come and enjoy the sensuality of scooping my body close. Yet one more loss. And still I must remain full of love and without bitterness somehow.

And that is the trick.

PTSD Surgery Story

I've been nervous about this surgery for some reason - even though it was "such a simple surgery"... and now I know why. It was a giant cluster fuck from the time we got there till the time we left. It was truly.

I feel almost a sense of PTSD from it... and I've been wanting to talk or write about it to get it out of my system - but I've been too much in pain really - to SIT and write until now. I told my sweetie Jeannie about it earlier and cried and got some of it out- and in so doing was able to release some of the bigger emotions that held on to it... and so with this I am able to release even more.

I got there at 8 a.m. The TIME of the surgery had changed twice even the day before the surgery. But that is OK. I can roll with a little change. Because this was not an "emergency" surgery I had time to do all my healing affirmations and visualizations. I had time to prepare and get the foods I'd need to eat afterwards. I was ready for this. And then... AND THEN.

We get there and they were SLAMMED. So slammed there were not nurses for patients. And... OF COURSE, I started my period. It's like starting it on your wedding day in your white dress or on prom day... NO. NO NO NOOOOOO. They won't let me keep my tampon in so they make me wear these mesh panties and a pad. Lovely. LOVELY. I will bleed all over the operating room BEFORE the cutting even begins. Joy.

I wait for 2 hours to even be assigned a nurse. I am ok with this. I do my visualizations and breath in. I'm wrapped up in a tent - so I pretend I am in a harem. No one visits me. I can hear the WORST of everything medical going down. "We need more nurses pull them from downstairs." "Not my job, you do it." "Get Sue up here."

So AWFUL. I want to go home. Today does NOT feel auspicious. I just breathe and wait.

An older man, an anesthesiologist - overworked and clearly tired, opens my tent and comes in. I smile at him and we talk. I have many IMPORTANT allergies he needs to be aware of. He also needs to give me some of my medications by injection that I hadn't taken that morning. We discuss it. I discuss my throat because it has a turn in it and if I tell him - he and his staff won't jack me up as badly trying to intubate me. See -- I KNOW THIS DRILL. I've done it.

I vomit after- zofran please.

We talk more. I tell him my good arm is jacked so he'll have to find it on my right arm and that I"m sorry. I can tell he's tired and hassley- but he can tell I've done this before and I'm trying to make it easier. I'm close to tears but TRYING. HARD to just roll with it. A nurse comes down and we go over all the important things. They try to get me to take a pregnancy test and I FLIPP THE FUCK OUT. "I'm bleeding all over preop in a flimsy mesh pad and my husband divorced me for being sick and I haven't had sex in god knows how long with anything that wasn't in my own night stand NO- NO FUCKING WAY- I'M NOT PREGNANT."

I realized my tent was open. Dr. anesthesiologist got to witness it. oops. He came back in and was a little more gentle that time. The nurse smiled a little and said, "Not pregnant- on period." in the charts. They got me hooked up and he got a tiny little inside wrist vein. Then he said, "You have terrible veins. They are not made for lots of surgery."

I looked him in the eyes and said, "I'm ignoring you because this hurts like hell doctor, by all means, tell me more about how much my life fucking sucks." He chuckled and taped me up.

I said to him, "Please tell me how well I do while I'm under and how well I heal." "We don't usually talk." "I'M ASKING YOU TO - LOOK AROUND - I'M ASKING YOU TO-- TELL ME HOW WELL I DO. I NEED THIS."

He nods kindly.

My nurse practitioner had held my hand and we talked more about pain meds and she told me what to expect and where the incisions would be. I felt calmer. By now - the younger anesthesiologist was there - probably a resident - I felt like we could start to go... but things were still off. I had to pee OF COURSE... it was taking entirely TOO FUCKING LONG. I had to sign off with my left hand b/c my right wrist were jacked up.

Then... they finally came in and gave me some sedative which only MODERATELY calmed me by now. As they wheeled me back They started doing this fucked up thing - and is the FIRST TIME I HAVE EVER HAD THIS in any surgery ever. They got my arm settled and then... instead of slapping the "oxygen mask" on me - they started talking and getting the OR room read. And I said, "Umm - WHY AM I AWAKE?"

I WAS JUST LYING THERE. I didn't like it. I like to not be aware of this room. This is where I get to sleep. I don't want to be here for this part. This is THERE PART. I do'nt want to HEAR this stuff. I do'nt want to KNOW THIS STUFF. I do'nt want to hear the things they were talking about - like I'm not a person - blah blah. IT SCARED ME. I hate that I had to see and hear that part.

And then FINALLY - after THEY were ready - they put the oxygen mask on and turned on the happy juice and I was out. And then... when I was waking up... here it is.

I woke up and the anesthesiologist had not ordered any long term pain meds for me. So I woke up with a shot of something small - like demerol? I'm not sure what? But it was NOT diluaded. So I woke up in PAIN. And in the past when I said, "pain" a nurse would say, "here" and give me a shot of diluaded and I would say, "ok"... and if I had more pain, I would say so, and after that all was well... done.

But this time I said, "pain" and a group of nurses said, "you just had something let it work. And I said, "PAIN' and they said, "You JUST HAD SOMETHING GIVE IT TIME."

And I realized that they weren't helping me. I was hurting. And they didn't realize that I had a bigger surgery than they knew. I didn't JUST have a gall bladder surgery like they though - I also had a small intestine scoped for the crohn's damage. And THEY DIDN'T KNOW. And I'm not sure if the anesthesiologist did or not - but I didn't care. Something went wrong. This was unlike ANY other surgery. My last 2 were like I woke up in a cloud of love. Truly-- I felt EMBRACED. I really did. I couldn't feel a thing. I felt rocked. It sounds like I'm lying - but I felt truly held and loved. And almost giggly. THIS IS NOT NOT NOT HOW I HAS TO GO.

And so I was nearly hysterical. And i started crying. pain. PAIN PAIN.

And I cried.

And I fucking hated my weakness for crying. And I hated their cruelty. And I hated Crawford Long hospital for being such a piece of shit hospital. And I promised myself I will ENVER EVER EVER have a surgery done there. And I realized that the nursing staff had NOT done an adequate job making enough nurses available for people waking up from surgeries. And I JUST got over my last emergency surgery.

And I just fucking cried. Like a baby does. I gave in. I am not strong. I was not built to be stoic for this reason. My body cannot tell it wasn't stuck with knives through my belly. I WANTED PAIN MEDS BECAUSE I TRUSTED I WOULD BE TAKEN CARE OF. I am not a drug fiend. I was not getting this to get high off fucking dilauded. I was there to have 2 fucking procedures that I didn't even want and my g/i doctor talked me into getting.

And 2 nurses came over and said, "you are making it harder for other people who are coming out of their surgeries."

"Pain. Pain Pain Pain."

And they pulled back my sheet and said, "Oh god - she has more than 3 incisions - they didn't tell us - this isn't just a (some word I don't remember -- get her some diluaded - more words I don't know"

And then a nurse named Tiffany sat with me and said, "Here - here. And she began administering diluaded to me. A few sequences apart. Till I could breath. And I calmed down. And the pain leveled off. And then I was able to sit up. And she gave me some percocet. And then she said she'd help me get dressed. And she had to go help someone else. And she NEVER CAME BACK.

And so I sat there - with no one. By myself. Alone.

I tried to sit up- I tried to get dressed - but I saw stars. And so I just sat back down. I had to pee badly- but I knew I couldn't make it up by myself either.

Then - a really ugly (not in looks - just personality) nurse came back. She said, "You need to get a move on, we need these rooms for more surgeries."

And somewhere - deep inside me - I pulled in and went into my PLACE. The one with SELF-ESTEEM. The one where I won't yell but you deserve it. I said, "well if you are here to be my nurse you can begin by acting like it. And if you are here to bother me you can move on and get a nursing supervisor and we'll discuss what I do and don't need to do because right now - I am the patient and I need help dressing and going to the bathroom and I don't have to do anything to make you happy at all."

And she said, "Do you need admitted to the hospital for a 23 hour admittance?" VERY SNOTTY.

And I said, "No - I need help dressing and going to the bathroom. Are you my nurse and are you going to help me do those things? If you are not - please get me a supervisor."

I just sat there.

She said, "I will help you."

Then she jerked my chair up- hard.

And it hurt. Keep in mind - I've just had ab surgery. And I said - "This is hurting - I"ve just had surgery on my abs."

And so it went... She tried to make me wear my mesh panties home... and I said, "NO-- please cut them off - if I cannot take them off in the hospital - how will I take them off at home? "

So she cut them off.

And put them on my legs and my pants and I stood up and got them pulled up... and the same with my shirt. I had the sense to wear slip on shoes.

It was like being dressed by a fucking neanderthal. Except- all I needed was someone to help. I didn't NEED someone nice. And then I needed help to the bathroom. And she did that too. And she didn't drag me to it. She walked me to it. And I was able to pee. By the great gods.

And then we got back and I said, "You can take my iv out now - I no longer think it needs to stay in. I'm ready to be released and someone can get my dad."

And she did.

I fucking hate that hospital. And that nurse especially- for taking her busy day out on me. I CANNOT HELP THAT I COULDN'T DRESS MYSELF. I CANNOT HELP IT. I tried. Twice. I saw stars.

IF SHE DOESN'T WANT TO HELP PEOPLE - SHE NEEDS A NEW JOB.

And I have a special place in hell for the anesthesiologist who forgot??? wtf - to give me any or appropriate pain meds coming out of a DOUBLE procedure surgery. FUCK HIM.

I'm terrified of going in for my next surgery now. There are no guarantees that this won't happen again. I feel traumatized... Like a piece of my soul has been raped repeatedly by the medical industrial for being in hurt and in need... I didn't WANT TO BE HURTING AND POST-SURGICAL. What was I supposed to do? Hop up and dress myself? Do cartwheels?

I'm still moving slow and can barely sit here to type and I've been doing everything RIGHT. I talked with the nurse practitioner about the best ways to heal and shower and stretch. And basically- it takes 48 hours for the pain of that ab stretching gas and such to GET GONE.

I'm just... I'm beyond ANGRY... I'M MORE... I feel... victimized in a way that I have no way to make it never happen again. Except to AVOID THAT PLACE. And make sure I'm very vocal about it with new surgeons and anesthesiologists -- but FUCK. I'm just... I have a new level of fear that I could have done without.

I didn't WANT THIS ANYWAY. And now that I've had it - I don't feel any better for it - though perhaps I will be.

Life goes on. And perhaps getting this story out will help me heal. Sometimes telling the stories puts it out there - shares it - so that it can not be pressing inside me anymore. It leaves space for healing me.

I've been giving myself reiki all weekend. And now I'm opening myself to love. BIG LOVE. I want to love it all away. I cried when Jeannie called - surprising myself that I had tears locked in there. But I do. As soon as anyone shows me the slightest love - TEARS LEAP OUT OF MY EYES. I'm so starved for kindness and love right. I'm so grateful for my friends. Thank you - thank you so much for loving me. For finding me lovable.

I am truly grateful that I have friends. I am truly grateful that we are MORE than slabs of meat on gurneys. And I LOVE YOU.

Surgery Day

Off to surgery #1. Feeling calmer about it.

Doc seemed to like his little biz card but decided to wear it as a name tag around the room instead. T'was funny.

If I die before I wake know I did my very fucking best. And then LIVE BIG for me OK.

I love you.

Peanut Gallery - And Surgery Fears

I'm having a twitter conversation with a dear friend today - about how she doesn't want her mother in the room with her when she meets with her new Rheumy. She has a complicated case and she KNOWS the process and her old Rheumy in Canada has retired. She NEEDS to visit her new doc... and this time her mother is going with her.

Friends and family have watched her get sicker (or at least not get better). And suddenly they realize THIS IS A BIG FUCKING DEAL. And NOW her mother wants to go to the doctor and sit in on the appointment. And now my friend is uncomfortable. Her mother will be there for THE RESULTS.

See... I'm just gonna say this... I've been in this position before. I've asked my own family to sit outside before. Why you ask? BECAUSE I KNEW THE RESULTS WERE GOIGN TO BE *BAD*. And I was prepared for the bad news. I knew it was going to be bad or worse or THE WORST OF ALL. And we were going to be going over it. And my family had just gotten into town. They JUST FIGURED IT ALL OUT.

And to be honest - I couldn't fucking deal with them in the room. I'VE BEEN going this alone since my divorce. And having them in the room on that particular day would be distracting. It would crumble my resolve. It would break my resistance to getting "bad news." I didn't have to "make decisions" that day- I just had to "get the news." And I didn't want to revert to a 12 year old child that day. I've been rolling with this shit for 3 years now - AND IT IS UNFAIR. AND I DIDN'T ASK FOR IT. And NO ONE HAS HELPED ME SO FAR.

The only thing that has come of it is that people have divorced me. Babies have leapt out of my stomach. I just wasn't capable of having anyone get "news" with me.

And on this particular visit I got the best "bad news." Which was awesome. The easiest to handle.

But I'm feeling for my friend. She knows she has a life of blood transfusions - she isn't tolerating her meds, her blood is going downhill, her vajay jay issues aren't doing what they need to be. Having multiple auto-immune issues is THE FUCKING SUCK. And now - NOW her mother is supposed to be there.

She and I both wish *we* could be each other's peanut gallery. I could be there - strong and listening for her and she could be there strong and listening for me. THAT would make me comfortable. SICK PEOPLE should be each other's peanut gallery. We should be the ones to go to the doctor's office for "the bad news" with each other.

I'm just saying. We get it. We've heard it all before. We can HANDLE IT. We know the quiet storm brewing. There is nothing we haven't seen or heard. And no emotion of unfair or bullshit that we haven't felt. I could hold her hand if she was overwhelmed or give her a 2 mile radius if she was feeling ballistic. Sadly - she's in Canada and I'm here in Atlanta. And when I go to Ohio - I'll be with unknown doctors and have to decide if I want to fly back to Atlanta (I do)- or try to restart new relationships and stay up there (no no no please god no).

My mother went with me to my last doctor's appointment to meet my new Internist. It is my mom and dad and brother's Internist and they all love her. If someone knows my entire family - I figure she's got a good bead on me. She already KNOWS them and I'm sort of... my family with about 200x more LOUD PERSONALITY then them. And I FUCKING ADORED HER. She was an amazing woman.

She keeps her work life balance by only working part time. She has children. She CLEARLY loves her job. And I was sure to fax up as much specific medical information as I could. My cardiologist, my rheumy, my g/i, my neurologist, my everything ologist to her... and all the blood work in advance. So she and I went through the quick and dirty blood work and how I was hoping to just come to her for infections and issues and stay in touch with my specialists down there. I NEED a cardiologist and g/i doc in Ohio - but SHE needs to handle emergencies as well - and be in strict contact if she's willing. AND SHE WAS.

She was delighted with the amount of knowledge and resourcefulness I showed... and she enjoyed reading through the charts with me. And THAT was when I got to see what I thought would be insidious awful notes about me. But they actually called me "pleasant" and sweet and other really nice words.

And... my mom and I chatted a bit and I told the doctor about my greatest fear being my brain - and how I know I have a type of early onset dementia when my brain gets swollen with the lupus CNS stuff and the steriod dependent (hashimoto's) encephalopathy... and how I'm fucking terrified of losing my mind... and that it has happened before.

She said she was glad to see me on a good day- so she will KNOW what a bad day looks like.. and... I felt REASSURED. And in that moment - I was GLAD my mom was there. It felt right. The doctor KNEW MY MOTHER. The entire conversation was 3-way. It was a NEW DOCTOR - a new conversation. Etc... But.. there are many times - when I'm having big deal issues...

like going incontinent - and dealing with the cutting of my sphincter.. and - even the surgeon is talking his creepo medical speak because he can no longer be a human. He has to go robotic because to say, "This fucking sucks Melissa" will reduce us both to tears. And if he went to tears every time his patients had a problem - he'd be a fucking mess... so he zones out into - "blah blah blah land" and I say, "I already poop my pants sometimes doc - whatever - let's keep me from going septic b/c I'm throwing out puss and you're doing your best - let's go."

So... I'm fucking afraid. Right.

Seriously - I'm scared as fuck for Friday... just do NOT want to go through anymore. This Friday is supposed to be the "simple" one and I'm like - can my body get beaten up anymore... and the following one is THE ONE where I have a chance (a bigger one than most) where I might be incontinent for a long time or permanently... so great. The doctor said, "If anything you might just have a sensation of needing to go to the bathroom immediately - we call that "urgency."

I can't write about it in a funny way b/c I ALREADY HAVE THAT. I have shit my pants in a friends car and needed to get out without really hugging her goodbye knowing that I'd not see her again for at least a year- but not wanting her to think I had no respect for her. And I don't know how to tell my healthy friends things like... I have an illness that makes my shitter sometimes explode... so I jumped out gave her a quicky hug and sat on my porch talking to her for another quick second so I didn't seem rude- but far enough away where she wouldn't SMELLLLL MEEEE or poop wouldn't LEAK IN HER CAR.

How do you tell HEALTHY PEOPLE ANYTHING ABOUT THIS? How do I even tell sick friends who don't have Crohn's or IBD this?? How?? HOW DO I DO IT??? It is nigh on incomprehensible?

I HAVE SO MANY PEOPLE who say, "Your writing moves me." And I say- -now does it??? NOW??? When you know I fucking explode? And I'm disgusting? I disgust myself? I am so afraid right now... I have no idea how to reach out and ask for help - because these 2 surgeries are so small - they are little... in and out...

not even big deals.

The first is just a little gall bladder removal and he's looking at my small intestines for Crohn's stuff... and the 2nd is the sphincter stuff... which is THE SCARY SHIT TO ME. It wasn't supposed to happen. None of it was. NONE OF THIS WAS SUPPOSED TO HAPPEN EVER. Ever.

A sweet friend has offered (if she can - b/c she's sick too) to come and sit with me and be there when I'm waking up and it just made me cry. I thought- "What have I done to deserve so much love?" It just broke me into pieces. Because coming out of the last surgery was so hard... I felt thrown against the wall for days... and the coming out I was just "In pain" and diluaded, "in pain" more diluaded... I hate that.

And tomorrow they were like, "You have to LET THEM KNOW if you want to talk to the surgeon. WTF. He's seen and met with me all of ONCE for 15 minutes and doesn't even know anything about me and I have to let him KNOW that I want to meet with him... but surgeons are like that. You are just out on the table. Who cares who you are - go to sleep and let me cut on you.. . BOOM.

I fucking hate this.

And I'm scared.

There.

How's that.

I never asked for any of this. At least when I was little and had to get my tonsils out they could bribe me with ice cream. Now I have to bribe myself with less vomiting and "Well - I won't go septic"... etc etc etc... And "I'm already "urgent'"... I hate this. I truly do. I want the Melissa back who DIDN'T ever have to deal with this. And I cannot FATHOM anyone in the room with me when I'm getting this kind of news from my doctors... not unless you yourself have had to get it.

Meanwhile - I would give anything to have my hand held. Or to be hugged. Because I am well and truly frightened right now no matter how I look at how "simple" it is - EVERY surgery carries risk. And I am anemic and on 3 kinds of immune suppressants. So when my body attempts to heal - how will it heal itself well???

I'm trying so hard not to hate my body- but hate the diseases. But it is hard. Just as it is hard not to hate myself for getting sick...

A sweet friend pointed out that they kept East European Jews so long in ghettos that we have JACKED immunity and genes for a reason... mix that with my dad's native american bullshit genetic code and it is bound to happen. Thanks DNA.

I would love to leave this with an affirmation rather than just pouring out my fears... I would love to say,

"Every hand that touches me helps me heal"
"Every heart pours out love and bolsters me and I them"
"I heal quickly and easily free of pain"
"I love myself and it shows."
"I can do this because I am doing it."
"Everything I need is provided for me."

ok - see... I'm feeling a little more stable...

Love to all my sickos out there. I do understand you. I truly do. Would that we were all each others support. GOTCHER BACK!

Sick Identity - Love Hate Doctors - Just Fuck

I am about to go to bed - but before I go- here is what I thought of in the shower.
...

You wish.

I thought about identity and how hard it is for chronically sick people to keep losing it over and over and over... and every time we latch on to our identity as ONE THING (like when we were healthy) we lose it and then we re-form as "ok I can work PART TIME"... and then "ok I won't be a mother"... "or a wife"... "or a professor"... or ... mountain hiker, hockey player, blader, (I'm literaly thinking REAL HOBBIES I used to do but you can insert your own that you've lost.. you've already told me DOZENS AND DOZENS).

and the list goes on...

AND THEN I began to think about how I can get all crazy sauced in front of people like doctors or my former improv troupe and flip out. And I DO NOT LIKE IT. I don't. I do not like it. And I have NO CONTROL OVER IT other than MEDICATING THE FUCK OUT OF IT and continually going to my doctors to check in.

I FUCKING HATE BEING A PATIENT.

I HATE IT.

I hate that I have the identity of patient.

I hate that I have to rely on doctors whom I don't trust BECAUSE I KNOW THEY ARE HUMAN. And I know they don't like most of their patients all that much -- especially patients like me-- patients for whom their is NO HOPE... patients who only get sicker and sicker... patients that are supposed to heal easily and quickly but NOOOOOOOO this one has fucking lupus (and 20000000 other diseases) so she's going to develop and abscess and require emergency cornhole surgery and then I won't find it and then piss blood and then and then and then and then and then.

I haven't really written about this right.

I just can't.

But anyway -- I hate that I have this identity. Of sick and then everything that touches me seems to suddenly - instead of miracle healing me- TURN INTO PAC-MAC - eating me from the inside out.

I FUCKING HATE IT.

I hate that I want compassion. I hate that I need it. I hate that doctors don't want to give it to me or healthy people don't or anyone. I hate that I used to be healthy and that I might have once been like this (though I doubt I was EVER like this b/c I used to do reiki on sick people- I KNOW I used to hold "judgements" about how if they only released their negative thought processes and lifestyles they could HEAL -- WHATEVER - I'm a fruitcake ok).

I HATE IT.


I hate that doctors (especially oncologists) used to come to me for classes to heal their own fucking lives. AND NOW I HAVE TO GO TO THEM. And I know how afraid they are. And how minimal they feel. I HATE IT. Because I know how human they are and how not good enough they feel and how little they WANT to deal with most things.

I hate how OFTEN -- and I mean FREQUENTLY OFTEN- things have fucked up... like a doctor will say, "I'm looking at your test and it says you are negative" and I will say, "that's odd b/c the radiologist was telling me she saw 30 of them.. and the doctor will stop and re-read and say, "the report says negative." And I will look at the doctor and say, "well - the radiologist usually isn't supposed to tell the patient stuff but she was just being chatty with me b/c I talk alot and well -- I think the report might be wrong."

So the doc will call and come back and say, "Yes- the lap top says it was over 30-- I'll have a new report faxed over, glad you caught that." And WHAT THE FUCK. WHAT THE FUCK. WHAT THE FUCK.

And I just handle it. But you know. It happens ALL. THE. TIME. And I have to trust that it is ok when a doctor tells me, "I don't SEE ANYTHING." And I'm saying, "well - that's crazy- b/c I have a fever of 100 and I'm pissing blood and my kidney's are fine and they aren't finding signs of UTI and well... you were the LAST ONE TO OPERATE SO-- FUCKING WHAT... WHAT... GO GO GO."

I hate it.

I know that no doctor wants responsibility for a sick patient. I realize it. Especially one who has Dread Pirates Disease and who is possibly going to explode of something. you know - insert your own big college medical word. I'm tired.

I HATE IT.

Humans working on humans who have real feelings and real lives and I try to be sweet but when I'm in the room I'M AFRAID AND I'M SICK AND I'M SCARED -- and they don't give a shit. And so I try to be funny and entertaining. But you know -- I'm also... sometimes NOT. BECAUSE I'M SICK...

Most of my doctors hug me. The ones with whom I have A REALATIONSHIP. The ones that I am flying back to Atlanta to stay with. But -- like surgeons -- the one that come and go -- the ones that you see 2 maybe 3 times. You don't build that shit. done and doner.

But it would be nice if they GAVE A FUCK IF YOU WERE GOING SEPTIC.

Here's a sample. It writes itself:

Melissa pisses blood. Melissa calls rheumatologist at 4pm on a Saturday because you know... she's pissing blood doesn't want to freak out. (Melissa is already freaking out because she is POSITIVE that she has MSRA SHIT STORMING through her veins and is walking dead or at the very least - her kidneys are bonking). Melissa calming explains to Rheumy on call that she is a lupus patient with CNS malfunctions - dealing with sonic fuck ton of OTHER issues just had cornholer surgery for abscess and well - is urinating blood.

Rheumy on call says: Please call your surgeon right now and find out if he catheterized you. If he did I won't worry about this. If not, I want you to keep an eye on your temperature. You're at 100 - if it jumps to even 100.5 to go the ER. (The surgeon says, if it goes over 101, call them). I'm breaking their rules- but the rheumy told me to do it. I call in. They call me back an hour later. It's not my surgeon but one of his female partners -- she says, "I don't think he would cath you for such a short cornhole surgery".

I say, "I didn't think so - but my rheumatologist is attempting to be thorough and I need to follow up with her. Thank you."

THEN-- THEN SHE WHIPS OUT THE BIG GUNS -- TO PUNISH ME FOR CALLING HER ON A SATURDAY.

She says, "So - are you urinating any feces?

Wow.

I sit there. In stunned silence.

I choke on my own stunned silence.

I say, "Um - if that happens when I stop urinating blood I'll make sure I let you know first."

She hangs up - CONGRATULATORY. SHE WINS.

I call back the rheumy and tell her that I'm a whiney whore because I'm not pissing enough shit in my pee hole.

The rheumy tells me to keep taking all my medications and follow up with my CT scan and surgeon on Monday...

And THIS -- THIS IS WHY I FUCKING LOVE AND HATE DOCTORS.

Two of them have SAVED. MY. LIFE. I love them. I truly do. I tell them I am grateful for them. The other 11 specialists I see all are wonderful -- most of them are so kind... they smile and laugh and hug me...

And then.. there is always moments like this -- where the total cruelty of an interaction - where DURING DAYLIGHT and at the BEHEST of another specialist I call and get slapped down because I'm not pissing shit. Im' supposing she's trying to find out if I have some sort of rupture or fistula or other big sounding medical word I'm not even bothering with. I'm not arsed to deal with it.

I wrote a funny comic that says, "King of the Cornhole" for my surgeon. I hope he's not offended. He probably will be. He'll probably scan it and put it in my chart and write, "This lady is one creepy mother fucker." next to it.

And for that I am sorry.

I try to be sweet. I am also funny. Because I am. I perform for people when I'm not busy being sick and you know - GOING SEPTIC... or whatever the fuck.

*grumble*

I was SUPPOSED to have an easy peasy in and out surgery on friday... if I'm not better by then or IF I have to have ANOTHER surgery (because the surgeon said, "I saw all the puss but I couldn't find the abscess and I looked really hard but sometimes these things hide- we need a ct scan".... then that surgery will have to get moved....

I already had to move my pill cam study...

thank you for allowing me to vent.

this went from identity to my venting. and now I feel better.

I'm going to go sleep like a drunken baby.

zzzzz

Processing Stuff - Useless Post

I did a show tonight with people I adore. I feel so happy that I got to do this show. I even had to use my cane and I didn't WANT TO- but I needed it. And I had fun. And I feel so grateful for being in this show. And so sad simultaneously to be moving away.

Laughing and crying is HEALING. And I know this. I'm so GRATEFUL I GOT TO DO THIS. I'm so GRATEFUL I was able. I don't want to think about it ending. Tonight was enough. My most powerful beautiful moment was with my favorite improvisor. She's "only" 17. And I fucking love her. We got to do the last scene. And it was a singing scene. And those are THE MOST VULNERABLE. And you always feel so out there. And we did it. And I was SO GLAD to do it with her. It was her birthday.

Anyway- I have some sort of anal absess and the surgeon cannot find it. And I've already had an emergency surgery. And it won't go away. He couldn't FIND IT. And it is frustrating. I feel like someone threw me against the wall. I truly do. And I'm supposed to have more surgery on Friday. And everything is getting set back. I feel like it is the story of my life only in my asshole.

AND I AM FRUSTRATED. I just am.

The surgeon wanted me to come in today for a cat scan to find the source of the infection and more surgery and I was like. ... you mean on monday... BECAUSE TODAY IS MY SHOW. I'm just SO TIRED of my life being put on hold for my health.

I have so many things in my life that have been put on hold for my health. And I'm sick of it. SO. SICK OF IT.

The doctor was irritated with me. But I was just like - "doctor - I want to take zofran and go have fun with the people I love most in all my life."

And he was clearly annoyed. Because OBVIOUSLY I'm playing with fire. Obviously going septic is deadly. And obviously I don't know what the fuck is wrong. But... I'm just... I'M SICK OF IT. Everything in my life is like this. And I don't know if I'm a whiner or if it is real. I don't know if I'm just EXPECTING to be sick or TRULY sick or if I'm a whiner.

I don't know.

wtf.

Life with lupus and autoimmunity is so fucked up. I don't KNOW when I'm sick or when I'm TRULY sick or when I'm SICKITY SICK.
I don't know.

I hate post op feeling- like I've been pulverized. And now I don't even know how I'm doing or if I'm getting worse. I'm vacillating between fear and sick feeling HIGH from happiness and grateful tonight.

ugh.
So - this is a useless pointless post. I have no point. I'm just feeling sick and lost. And terrible. And it is so odd b/c I'm also feeling happy and joyful and thrilled that I was able to go have fun tonight. True fun. Life is so strange.

In my body I feel truly yin and yang. Happy and sad. I feel so much great loss and so much gratitude. It is so confusing. It is hard to process it.

Written On Chemo_Babe's Wall

I wrote this on Chemo_Babe's wall in response to her post about dignity:
http://www.chemobabe.com/2010/06/leave-me-my-dignity-please/

Yes. More than "cancer patient" we are all PATIENTS. People get "immune" to the "chronically ill." It is why I am so outspoken on behalf of the chronically ill. I AM a chronically ill woman AND I watch doctors AND medical staff AND hospital and pharmacists etc etc alternately adore us AND get worn out from it all. And they can be all those things simultaneously.

I don't think our medical industrial complex has the right ATTITUDE about illness and sickness in general. I don't think we TREAT people right when we get sick. I think we treat sickness as a FAILURE of the body- and then we treat chronic sickness as a BIGGER FAILURE- even one of our spirits.

So - YES Lani- YES you did right to expect her to act like a human. And she- perhaps she was feeling like a church mouse. Perhaps she is an awkward physicist. Perhaps she HAS no real sense of social grace BECAUSE she is like that in "real life" even when she is not deal with sick people.

Honestly- most of my engineer friends have to be TOLD how to respond appropriately to "normal response" things anyway. And they often APPRECIATE it. But when you get sick a special layer comes off... People just DO NOT KNOW HOW TO RESPOND. They just don't. I'm pondering it now. Doctors LEARN how to respond with their kind friendly but NOT YOUR FRIEND indifference ... but what of YOU? What of YOUR REAL LIFE?

It is this substance that I am seeking...

How do WE reach out and truly get back into it.

I have many chronically ill friends who are angry about their particular illness. They don't think THEY are understood as well as "that illness over there"... not realizing that it has taken YEARS AND YEARS of struggle and work for any illness at all to have understanding and compassion.

Meanwhile... YES. Being outspoken and your own advocate is important. But what of the days when you're too tired to do so? What of the days when you ARE just going to lie there and submit? Because we ALL have those days? Then what? THEN WHAT?

MUCH much love to you.

I am glad you explore these ideas.

For some of us these things will NEVER go away. We are sick "for the long haul." We will be in and out of surgeries and repair jobs for the long term... and it is important to me to somehow find the sweet spot between being chronically ANGRY and being thrown out like yesterdays compost.

What Sickness Can Have Of Me

Fluffy mind
grey furry
kitty

stab wounds
in my soul
the pain
reverberates
on my physical body

you don't know ME
you say
of course not
I say.
Will the real slim
shady
please stand up
please stand up.

there is no such thing
as a REAL YOU unless
you peel off the layers of
hidden
and step forward.

I know this
because I have hidden
behind mask after mask
for so long
I forgot I was hiding.
Stage time turned into
classroom professor
turned into writer
turned into
wife turned into
the Melissa I was
SUPPOSED TO BE.

Until one day I GO SICK.
And now - and only now
I realize now one tells
sick people how to be.
We just get sick
and there are no more rules.
THERE ARE NO RULES.

Unless I count the ones that say
people are uncomfortable
around illness. People are
upset by the sick.
People don't like
to discuss awkward shit,
taboo topics,
or especially polluting polluted
horrific things that will
never get better--

"STOP TALKING ABOUT
BEING SICK I'LL STILL GIVE YOU
ATTENTION EVEN IF YOU
DO'NT TALK ABOUT HOW
BAD YOU FEEL."
I once heard a man tell a woman who was
on chemotherapy as her chemo dripped into her vein
through her port.

She cried slowly, wordlessly. Her shoulders shrugged.
He offered to get her a chocolate sundae
and she agreed but I could tell that she was
only 'behaving well' for him.

I wanted to hug her, but I knew that my
presence was not invited.
My presence is never invited.
I want to STOMP OVER EVERYTHING THAT IS UNFAIR.
My sickness is unfair.
Doctors get tired of chronic illness AND SO THEY ACT LIKES SHITS.
The good ones are fabulous- but there aren't enough to spread around.
Men check out of marriages and so perfectly lovely women end up alone.
And so we end up with terrorized hearts - afraid to love again -
and that leaves me --
tentatively writing this
peeking around.
Realizing that the loving I've been doing is healing me.
Learning to love right now right here is healing me.
Maybe it isn't SEX but love is healing me from the inside out.

And I'm watching illness not necessarily win.
I'm watching some people have victories, small ones -but victories every day.
There are no rules anymore
to loving.
To being sick.
Fluffy grey fur
on my kitty cats butt
he loves me.
He has no rules
except he doesn't like
to be chased.
He will come to you
and snuggle.

NO CHASING.
UNDYING LOYALTY.
done.
We have a deal.
I love him.
He loves me.
He accepts me even with my sickness.

I talk to my lupies sisters.
I chat with a friend in recovery.
We are all healing.
Stay on our Path.
There are no rules for this.

I do know you.
You are HUMANITY.
And if you are unwilling to
share more
and give and
receive more
and ask when you have pain
and hold out your hand
when it is needed
then you are doing yourself a disservice.
I am only NOW learning that lesson.
And it is a valuable lesson.
And I am letting you know me.
I am letting all my beautiful
friends know me.

And it is scary to me.
This love stuff is scary to me.
Loving people is RISK.
After THE ILLNESS - so many losses -
so many people went away.
It hurt so much.
But now - I have so much love too.
And I'm so grateful.
I am surrounded by love.
And when my friends need me
I FEEL USEFUL AGAIN
FOR THE FIRST TIME IN TWO YEARS
I AM USEFUL.
I can talk and make people feel listened to.
I can knit (slowly and badly- but I can).
I can make cards for people.
I can send sweet e-mails.
I can use my mind to think smart thoughts for those who might want college advice.
I am still a useful and productive being.
I just forgot.
I am not the Melissa I was before.
But I am still someone - an I'll be damned if the love I have now isn't BIGGER BY MILLIONS
than it ever was before.
maybe in part
because I'm
being more honest.

So- maybe I don't
know you.
or the real you.
or the you that you
want to be.
or that you will become.
or allllll of those yous.
And maybe you are just
getting to know me.
allllll of me.
Because you are only meeting
some of me's.
And I'm learning to know me
every day.
And I'm happy to find out
that I am lovable.
And that I LOVE SO MUCH.

Stab wounds.
in my body
reminds me
who I am
but
it cannot
take away
anything
about me
other than
some
rest.

I defy
you
sickness
to steal
anything
more from me
I WILL NOT
GIVE IN.
I
will
not
give
in.

The New Minimalism

I love minimalism. I love everything about the concepts and the ideas of it. I enjoy doing it. Living with less - consciously- with gratitude. This is written mostly in response to a woman who asked me "What is this minimalism thing you're talking about?"

Minimalism is basically- Doing with less. Not substituting THINGS for our true inner desires. Not SHOPPING to stifle our VOICES or our NEEDS. Not cramming our houses and our shelves full to avoid LISTENING to our fears and wants.

Some of my very favorite bloggers are found on twitter as well - and whom I read daily. David Damron (daviddamron)
Everett Bogue, (@evbogue), Karol Gajda (@KarolGajda) are all powerful and beautiful and amazing writers. I adore them. They each offer amazing insight. There are many more as well - but these are the three that I read on a daily basis. The rest I generally read on a weekly or less frequent basis.

I also frequently DISAGREE with these guys. I do NOT LIKE some of their judgementS or their MYOPIC views or neglect at seeing how sometimes life gives you confusion, burdens, or an inability to TRULY streamline. (Medical needs are anything but streamlined). OLD AGE, families, sometimes you can have a true peace in your heart - but your life will be a cluster fuck. And that is NOT YOUR FAULT. You deal with it with good humor, grace, love, and TRUST that life will go one. The trees will shed their leaves and flower again. I've read far too many judgements (at themselves and others) to truly think there is ONLY ONE WAY OR ONE TRUTH. And yet-- I fucking adore these guys. I think THEY and others like them offer the world a wonderful way to live - a different way... a new concept many have never considered... unplugging, decompressing, chilling the fuck out. Making real life friends, having REAL CONVERSATIONS. Being alive.

Last night when I was UPSET - I wrote about it in my writers area. I just cried and wrote. And I accepted some of your love. And I was grateful. Then i went to sleep. I LISTENED to my inner demons. I spent TIME with it. I didn't eat it away or shop it away or even really TALK it away. I just LISTENED to my fears of being not good enough, being too much, being all the "blah blah blah" that comes up.

And it is that BLAH BLAH BLAH that the commercialism of our world latches on to - and we do too - we hook line and sinker it. "ohh- what if I am ugly- " and snap - we buy it! "Ohh - I'll DIE if I don't fit in"- and we get more more more of whatever it is we think will shove down all those horrific feelings. Sometimes we do it with food or all the different ways we can do excess.
Anger, rage, pain, self-loathing, shopping, consumerism, television watching, sports, online spending- all the mind numbing ways we can CHECK OUT - we do.

And yet-- one thing that some of the leaders of minimalism forget - is that for some of us- online time IS our connection. For me - I spend more time online because my outside community time dwindles. I USED to spend lots of time volunteering. I USED to have plenty of time to go to children's hospitals and nursing homes and to make food for the poor and distribute it. That was IN ADDITION to my neighborhood building and my job. But as my health deteriorated - online BECAME my community.

I now have "my lupie sisters" and my "poop shoot people" and "my cancer warriors" and any number of chronic health support groups who SUPPORT AND UPHOLD each other with phone calls and online twitters, e-mails, IM's, skype. We use social media like Facebook and blogs to talk about our day. Sometimes for the FIRST TIME our great losses are the first and only time our truth has been heard by ANYONE AT ALL. And sometimes our loss seems less horrific and can only now seem to make sense.

I once wrote to one of my minimalist hero's - and asked him about being ill. And he said something like, "Well - you then just get to focus on being well." And I thought - FUCK THAT SMACK -- I CAN DO MORE THAN THAT. I will BUILD MY COMMUNITY OF PEOPLE HERE. Online. I will have a family of choice just as surely as I had one on "real life flesh and blood."

Most of the miniamlism bloggers are MEN. Notice it. The women seem to be DOING THE WORK. They are gardening, sewing, making things from scratch. And the MEN are writing about it - telling people to do it. Following each other. And that is OK. It is often how it goes. I'm a sexuality and gender scholar. When the HIV/AID's quilt came out it was the feminist lesbian/queer women who sewed most of it. Did you know that? IT WAS THE WOMEN WHO DID MOST OF THE WORK. I am not bitching. Just pointing it out.

It is still so. They refuse to add people to their twitter - saying, "I am MINIMIZING MY LIFE." AND THAT IS OK. I do something SIMILAR. I only ad cautiously - for RELATIONSHIP REASONS. I only ad with people who speak to me and get to know me. And then one by one - we talk more and more- and I KNOW YOU. I TRULY GET TO KNOW MY TWITTER FRIENDS. Soon we ad phone conversations and outside support. We cry to each other. We laugh with each other. We know about surgeries and deaths and cancers and illnesses and ER visits. WE ARE STRONG FOR EACH OTHER when days are weak and we are vulnerable for each other because there is TRUST.

It is a REAL COMMUNITY. It TRUST YOU. I do. I don't "need" followers. I am not SELLING ANYTHING BUT MY LOVE AND MY TRUTH. And I don't want anything in return but that.

And I think that is MINIMALISM IN MY OWN WAY.

That is something that the young men of the minimalism movement has forgotten to discuss. Be grateful for your able bodied ability to move around the country. You aren't on dialysis. You aren't fighting cancers and illnesses like some of us. We fight being the "polluted and polluting" -- people hate us. Even our own families cringe at the sight of us. Our former friends are uncomfortable around us and we are forced to come to terms with WHO ARE ARE NOW.

We must hold on to our dignity and our love and our sanity. We must make SENSE of our lives. And THAT is what minimalism is about really. Finding balance, truth, honesty, claiming our OWN TRUE SELVES. LISTENING TO OUR HEARTS and not what someone tells us. Instead of just commercials and our own fears - we also have doctors and healthcare providers shouting at us - telling us "you are dying - your body has betrayed you"... and we have our spouses leaving us telling us, "You stink of death."

And we must go deep inside - DEEP INSIDE and come with the REAL TRUTH -- which is -- we are all divine - we are all beautiful. There is no ugly. And sometimes you bloggers - I love you for giving people options. I fucking ADORE YOU. And sometimes I want to snap you in half for getting so FOCUSED on your lives that you FORGET GRATITUDE. You forget that you have ABILITIES. You forget that you HAVE OPTIONS that some of us have lost.

I struggled with this for some time. And I have decided that I still adore you - because you offer answers to the world. You offer hope to some people who are still lost. And I realize that you would come to my house and sniff with disdain some days. I can no longer garden or dry my own herbs. Some days I am so sick I must eat *gasp* PREPACKAGED ORGANIC FOODS. I make more waste in one day using bottled pills and medications and foods and health care supplies than most of you do in two months. And yet in my heart - I DARE any of you to tell me that my LOVE or my GRATITUDE or my HEART CENTERED DESIRE FOR PEACE AND JOY is any less whole.

Nay-- I think we are all on the same path - it just leads to the mountain differently. We are all looking at the same beautiful horizon my minimalist friends. I'll just make more rubbish along the way with needles and tubes and plastic pre-packaged medical kits. And when we get there - I will be fucking happy to see you. I call you friend. I call you GOOD.

I also call you TOO FUCKING SERIOUS. Sheesh - let your fucking hair down once in a while. Life - I PROMISE YOU - is too mother fucking short. And you NEVER KNOW when a doctor will come into your room and tell you - "You have this dread pirates disease I'll give you some long ass name and nothing will ever be the same." And then you will NOT be able to couch surf or live anywhere. You will be STUCK with doctors and hospitals and people who take care of you and monitor your health. And then you will have to RE-FIND your minimalism. And you will have to say, "Ahhh- life - you are so funny. Thank you for your lessons."

And you can CHOOSE to keep going and LOVING and making SUPPORTIVE community. Or you can be a selfish whore. Or - you can find balance in life and just go at it every day - LISTENING to your true innerself and knowing that WE ARE ALL ENOUGH. We are. The greatest gift you can give the world is to be ALL OF WHO YOU ARE.

Love you!

June Third

I'm not even sure where to write this. A writer's journal? A diary? A blog? To WHOM to I give this? My friends? My support?

I want so badly to joke about it - but it is TOO RAW. Too real still. I suspect it is what makes me so jumpy still about perceived hurts and slights... if someone doesn't love me IN EXACTLY THE WAY I WANT TO BE LOVED - I am off like a lightening bolt.

And I am learning to calm that side of me... ease it. Allow people to have their OWN process, their own feelings, their own sense of self.

Yet -- Today- June 3rd - would be my wedding anniversary. (We had already secretly been married for several years- but we got publicly married for our friends and family). We married in a rose garden. They were all blooming - because I love roses second only to wild daisies. I love gardens and flowers and always will. My wedding day was truly joyous. All my friends and family were there. I was already pregnant. They had to let my dress out (just a smidgen) but we told NOT A SOUL. My LIFE WAS COMPLETE - or so it seemed.

He looked in my eyes so happy. You can see the joy. You just can.

And yet - I was talking to one of my friends who has an astoundingly similar experience to mine - same fucking diseases even - came cancer- came autoimmune illnesses - same freaking marriages! And her ex said, "You stink of death" to her - as she started chemo. And he left her in round one.

Mine was not so crass or horrific. He simply put up with my illness for a year. And ON THIS DATE. THIS EXACT DATE he sat me down at a table and said to me, "I cannot be married to you anymore." And he cancelled our anniversary tickets to Scotland. And he told me to move out within a month. And that was that. It was simple. It cut like a knife. There were no fights. There were no angers, no yelling, no horrors of diminished love. Until he asked for a divorce - my heart burst inside my chest for him.

And on this date last year I got my tiger tattoo -- I hadn't the money to get it colored in - but I got the full back done. IT IS MY CLAIMING OF MY OWN POWER - MY MELISSA-NESS.

And yet- this date was my special date. It cannot come nor can it go without bringing me pain. It still feels like an awful failure. I was so in love. And I am so overwhelmingly overcome when I know there are men out there who could or would love someone when she was sick.

Women do it all the time - but not men. And yet - I WITNESS THIS. I watch women and men use each other up like they are nothing but disposable things. And those men are always gems. And I always wonder - why is this gem allowing this? And I have to realize - "this is YOUR LESSON. You must learn your own worth."

But I so often have to bite my tongue. I know so many gems. You are there. But you are not with the women who would love you - truly value you. You are with the women who take you for granted and devalue you - mop the floor with you. Life is such a strange thing. I suppose it is supposed to be that way - to keep us all interested and participating.

Today- on what would have been my anniversary - I honor the date that I continue to RECLAIM MY OWN SELF. I honor the woman who is capable of LOVE. I honor a world that is able to love.

And - I cherish a woman who still mourns. I do. I still mourn losses. Great losses. So much so that I cannot make it funny - I cannot make it easy. I cannot even blame my illness because any man who would leave me so quickly IS NOT TRULY A MAN.

I have come into my own WITHOUT ANYONE - of course with someone I would have done it so much more easily.

And I want to honor the woman inside of me who misses. I miss being loved like that. I miss being cuddled. I miss being recognized as important. I miss the trappings of my life.

Today. Perhaps only a date - but I cannot let it go unrecognized. I love you, Melissa. I hurt for you. I honor you.