Guest Blogger: Kat --- strong and kind, Smart and pretty. Won't let her disease define her.

The month of August*
Brings emotions to the surface
Because of two major events that happened in that month
But ten years apart…
In 1998, I got married
Walked down an aisle with a bouquet of beautiful flowers
Bright & Warm
In 2008, I was ill
And walked down the aisle with a noisy metal IV pole
Cold & Pale
Both times, I wore a billowy white gown
In the month of August

Most people remember their wedding anniversary.  Unfortunately for me, my illness took away a date that should be remembered and cherished.  I had originally wanted to celebrate my ten year anniversary with a Luau-themed party but instead I ended up in the hospital with a Total Gastrectomy and a medical bill.

In the beginning…
When things are good
And laughter comes freely…

And then…
One day
It becomes real
Suddenly,
You're tired
Frustrated
Arguments
Over stupid things.
Because no one wants to see someone that they love sick, but we have no idea how to deal with it…
To scream the words we CAN NOT say lovingly
Because it hurts
Because we want our old life back


Relationships take work and they're hard enough on their own, but throw a chronic illness into the mix and it can really shake things up.
I wasn't ill when I met my husband.  I was spontaneous.  I was carefree.  I was "healthy."  Nothing was planned.  We stayed out late, eating and drinking without hesitation.  No doctor appointments (unless a cold surfaced.) and not a lot of medical bills in the mailbox. 
And then…Bam!
The person that you knew for (weeks, months or years) becomes different…and it's not their fault.   

Illness changes you
But are those with you
Ready to change too?

Being with someone who is ill takes commitment.  It's easy to say, "It'll be okay, because I love them."  but it ain't that simply.  It can be a hard task to take on, seriously, but definitely something that can be done….IF you're ready. 
Some people are.  Some people are not…and it's not their fault.

People sometimes ask me…"Should I get into a relationship and tell them what I know? Or keep it a secret (until they fall madly in love with me?)
People sometimes ask me…"Why are things so different, does it get better with time?"

Woulda, Coulda, Shoulda

So many questions
"Would you stay if I get sick?"
"Could I hear the answer to that question without crying?"
"Should I have said anything…or should I have waited?"
"Would that have made a difference"
"Could it?"
"Should it?"

I wish I could answer the questions that plague the minds of so many people…but I don't know the answer because every relationship is special and wonderfully unique.  You might be surprised when someone who doesn't like your dirty tennis shoes holds your hair back when you throw up. 
You might be amazed at that person who waits patiently in the ER when usually a fast food order gets them frazzled. 
But you know deep down, when it's the right time and although you might have made mistakes in the past
You'll know
You just have to trust yourself.



*August 15 means 15 years married and 21 years together and still hanging in there :)

Kat is amazing. If you want to learn more about her check out her website -->

 http://www.mycrazycolon.com/index.html

I  would love to start from the beginning but it's hard to know exactly when that is or what to say about it so I'll just start from where I can and go from there.

We'll start with the diagnosis. Lupus. Fuckass bitchmade douchefilled Lupus (excuse my language) Lupus is the process by which YOUR OWN immune system refuses to recognize your OWN body and attacks it just like Al Queda.  .

So I took the bar exam at the end of February. During the last week of study I developed bronchitis and a sinus infection. I know. sexy and really convenient. So I called my primary care physician and she made an appointment with her nurse practitioner. Now. Honesty. I don't care if your mama and grand-mama and great aunt and pastor are nurse practioners. They can call lick my clit. Both times I've had a Lupus crises it's been because of a nurse practitioner and I hope they all choke on the hottest of donkey dicks.

BUT I DIGRESS.

So THIS BITCH after being told I have Lupus and having the LUPUS diagnosis all over my chart prescribes me an anti-biotic and can cause Lupus and should not be prescribed to people with Lupus. . . .

EPIC GOT DAMN PAUSE.  .. 

So I take the shit of course. I get well enough to take AND PASS (making me a lawyer again)

  but a week after the test I am in the ER with the most severe abdominal pain I have ever experienced in my black ass life. It was the pain of every slave mother giving birth then going right back to work. The pain of a thousand stomach crunches the day after. The pain of George Foreman cutting one right to my gut. On the drive to the hospital I promised my lord and savior that I would cut out my ovaries and offer them to him at the alter that Sunday if he would just make sure I never experience that kind of pain ever again. 

Turns out the anti-biotic I had taken set my Lupus off TWERKING and it spread from quietly demolishing my kidneys to reigning terror on my abdomen and back. AWESOME.

I got into the ER and was like PAIN MEDS NOW. They gave me the pain meds but I also had a fever of 104 so I was a little bit out of it. This is when the residents decided to ask me dumb ass questions. 

Resident: What day is it
Me: Night day
Resident: What is the day
Me: Today. . . dummy
Resident: What year is it
Me:The year of MY LORD
Resident: Who is the president?
Me: Rocco Obama and Joe Budden

Resident:. . . let's go ahead and get this fever down. . . . .

They put me in a room with a pregnant Puerto Rican who spent the days yelling at her baby daddy over skype.  Luckily she was moved when they thought I had some sort of bowel infection due to the fact that I poop about once every hour. That is the only time the misunderstanding about my bowel movements has come in handy.

A few days after they removed La Reina they put an old racist Italian woman in my room. I had a nurse who was half Mexican and half  Iraqi and the Italian woman LITERALLY SAID "You are really pretty for someone like you. I've never seen a pretty Mexican before". JESUS. TAKE. IT. 

I spent a week in the hospital and they sent me  home even though I wasn't healed I just wasn't dying... as fast...anymore.  Well praise the lord she's not dying BUT she has a pic line in her arm and has to take IV antibiotics. 

I had a home nurse come to check on the IV and give me my meds and she thought that my distended belly warranted another ER visit.
 ** opens Dereon casket **.

 OF COURSE I get admitted. I stay in the hospital for another 5 days then I get released. Two days later I find that I am suddenly legally blind. As in I can see shapes and fuzzy colors but no definition. AMAZE-BALLS. I call my mother's office

Me: Hello can I please speak to Shirley Coakley
Operator: She might be on the line can I take a message 
Me: Yes can you tell her that I kind of. . .can't. . .see
Operator: come again?
Me: I'm sort of blind
Operator: YOU'RE BLIND!?!?!?  WHY DIDN'T YOU SAY THAT TO START WITH?! HOLD ON!!!

My mom took me to the eye doctor where I proceeded to start an eye exam and them promptly had 2 seizures 

and one more in the ambulance on the way to the hospital. Bless my own heart. I spent a week in the hospital where I received the first of 6 doses of chemo therapy and a few blood transfusions then I went home.

FOUR DAYS later I awake in the middle of the night and my vision is going in and out again. (Let the church say AMEN). We head back to the emergency room, I get an overwhelming headache and then BAM! Another seizure. I'm admitted into the ICU a day later I'm brought down to to a regular room then in the middle of the night I awake unable to breath. I can breath but I can't take full breaths. They try to give me oxygen but it doesn't work. Then the decision is make to intubate me. NOW. When you intubate

someone you are supposed to knock them out. You put them to sleep because it is a traumatically invasive experience that most people would be adverse to.  Like put them to sleep with the good shit. That killed MJ shit. They did administer it to me but they didn't give me enough to I was WIDE awake when they started to shove a garden hose down my throat. There was kicking, screaming, punching, and struggling before I was given more drugs and finally fell out. I woke up two days later strapped down to the bed PISSED. 
In all fairness the way I acted during the intubation makes me realize that the restraints were necessary.  I woke up and looked around the room frantically. I started to struggle against the restraints and coughed. 

Mom: Hi there
Me: aerihaweriah
Mom:I'm going to untie your hands but you have to promise not to try to pull out the tube or else you'll pull out your lungs
Me: akaweriherwuhad

** Mom unties the restraints**
 ** I immediately start grabbing at the tube and have to be restrained again** 
** foiled from killing myself! arrrgggggg**

I learned that I was going to have to remain with the tube in my throat for THREE hours so they could make sure I breathe on my own. WOMP. There was cell phone throwing, punching, kicking, and other acts of generally open aggression towards the people trying to save my life. 

It's funny. We go to hospitals to get help. We beg to be saved. We ask for respite. But medicine and science are PRACTICES. They are trying most things and still working many things out.And they were going full Jillian Michaels on my ass. I resented the nurses and the doctors and  don't even get me started on the flobatomists. 

[5:45 AM]
Flobatomist: Hello good morning I'm Carly I'm here to get your blood
Me: (thoughts) Go kill yourself
Fl: I'm just going to take a little. . . .
Me: (thoughts) DIE
Fl: which arm do you want me to use?
Me:(thoughts)  Neither. I HATE YOUR GUTS
Fl: ok small pinch ** STABS ARM **
Me: (thoughts) A PLAGUE ON YOUR HOUSE!

** throws all the emotions at the poor person trying to do her job**

But these people are working to get me well. I showed up on their doorstep dying and they are keeping me alive. It's completely illogical but it's the only reaction I could muster up. I didn't want to use the bedside commode. I didn't want to nurses to help clean me. I didn't want to eat their food. I just had ALL the anger. All of it.

I didn't want anything but to be well and I wanted it IMMEDIATELY. The greatest gift Lupus has given me is patience. I  can't have what I want when I want it and I can't do what I want when I want to because Lupus has other plans. It is a rude disease. It just shows up and then takes what it wants when it wants all while confused about what it needs. I left the hospital two weeks later needing physical therapy and a baptism because of all the bad words and curse outs(unfairly and fairly given) to the string of residents I threw out of my NorthWestern hospital room.

I will say this. I have some fantastic friends and family. They visited and called and texted and made me remember my humanity because it is so hard to hold on to when you have no privacy, little affect, minimal comfort, and you are bored out of your mind just sitting around being broken. I am blessed. I am thankful. I am in a much better position than a lot of other people and I have to remember that. I don't take a Pollyanna stance on my disease or the pain it's cause me but I do have perspective and that perspective helps me appreciate that hell. . . I could have a flesh eating virus or be allergic to morphine. 
THE END.

Oh Nancy

SO. I went in for a regular appointment with my hematologist and he straight kidnapped me. Sure I was a little dizzy and extra thirsty and a very tired but that wasn’t particularly new. My doctor comes in a says:

“hmm you look pale”

I thought he was joking. I didn’t know black people could look pale. . .but apparently we can.

“I’m going to check you in to the day hospital for fluids”

Alright. I can handle that. I go over to the day hospital I get my fluids then BAM! I get kidnapped! You have a low blood count. Your hemoglobin number is 4. You have to be admitted. BOOOO. WOMP. **Keyboard smash**. Iwewiukjhdfaiuwe.aiweuaweiurh

I have ANEMIA YAY!!! ** pops champagne** 

So they call the ambulance to take me around the corner (fastfoward to the BILL I get for several hundred dollars for that ambulance ride. . . )

SO. I get admitted, tiny hospital bed, gross food, awaken at all hours of the night, to get blood drawn, to get weighed, to get my blood pressure taken. Every day I look towards the attendings and the nurse hopefully asking when I will be released and the days passed with no word.

There’s a whole lot of “wait and see” with anemia and blood transfusions. Lupus is also a “wait and see” type of disease. I just get to wait and see. Eventually my blood count went up and I sort of get some more energy and I’m ready to go home. They want to watch me for one more day and I get to start the discharge process.

HOWEVER. Before I can leave, ENTER NANCY.

I wake up from my mid morning nap to the entrance of NANCY. Nancy has listless brown hair, she is shaped like dirty mop water, she wears thick glasses, she has a slight lisp and she has NO filter. After Nancy is dropped off she decides to go for a walk. I go to the bathroom. Three minutes later she knock on the door and says she has to go “potty”. BLESS HER HEART.

I get out of the bathroom and Nancy goes in. One minute later Nancy pulls the red emergency cord. The nurse shows up and Nancy wants to know which towel in the bathroom was hers and which one was for the “gentlemen”. PAUSE. Both the nurse and I looked around the room for this fellow Nancy was talking about. Oh. MEEEEE. Nancy was talking about ME. Nancy thought I was a man. STRIKE ONE NANCE!

“Nancy that’s a woman”

“Oh. I’m sorry. Did I offend you?”

**crickets**

Since I’m in the hospital and I’ve been on a shower strike for about 5 days I feel no need to be polite to this woman. I’d also like to mention that the MOMENT she entered the room the Jesus hanging on the cross fell upside down in what I can only guess was a sign of the times ahead.

Nancy gets her shit together and goes to sit in her bet. I turn on CNN. I mind my own business. Nancy tries to make small talk. I. Hate. Small. Talk.

Nancy: “What do you think about Obama”

Me:“he’s my cousin so I love him”

Nancy:“No. Way!!”

Me:“Yes he was just at our family reunion”

Nancy:“I just think he takes too many vacations”

Me: ** crickets**

Nancy” you know like he doesn’t work hard enough”

Me: “I’m pretty sure  George Bush took more vacations than any other president ever in the history of our country. You can google that”

Nancy: “oh”

Me: ** crickets**

Then BLESSED silence for about 11 minutes until Nancy’s mother shows up.

I could not make this woman up even if I tried.

First: She didn’t use a purse she used a “friends of the library bag” to carry her belongings

Second: she literally spit on her hands and used her palms to fix Nancy’s hair

Third: first words out of her mouth were,

“Nancy, why are you watching CNN you know we only watch Fox News”

** pull out IV and waits to bleed to death**

I learned that Nancy was on Medicaid and her mother was on Medicare HOWEVER they both were republicans and expressed great anger at all of the vacation days President Obama had taken. ** throws holy water on the ignorant **

Get Over Yourself

 BETTE DAVIS IS MY LIFE COACH!!




Chris "I'm having a flare up. I'm in pain. My life sucks. I woke up deaf the other day. Sometimes I can't see well. My feet are swollen and I'm like Rick Ross fat."
X: 

Chris: "Um. . . but. . .what about my TRIALS AND TRIBULATIONS?!??!"

 X: "Seriously. It's a downer. I mean I know you try to make a joke out of it but at some point talking about your Lupus flare up really is kind of. .  . depressing."

Oh wait. You don't want to listen to me whine? Oh. ** swan dives dramatically off pillow top mattress**

Well. Damn. Oh wait I PAY someone to listen to me. Why am I trying to get people to do it for free?

** throws a bucket of cold water on my own face**

It's been five years since I was diagnosed with Lupus and the reality of living with a disease that consumes your body and seeks to consume your mind is a constant carnival of new experiences. The honest truth is that people care about me but they don't need to know every little development in the war of terror my body is raging against me. People want to know I'm doing well. But the reality of the situation is that there are only so many updates on bloating, swelling, shortness of breath, blood clots, headaches, joint pain, rashes, and temporary blindness/deafness a person can take before they are just. . .not interested anymore. ** looks around to the sound of crickets** ** feels my own fat settling on my back **

It's not that people aren't interested but they can't DO anything about it so they can't tolerate hearing about it. In recent weeks I have begun to give some updates because I'm SO amazed by the shit by body has thrown on me. I find it utterly comical but I realize not everyone finds it so. But then I remember this isn't everyone's business or battle. This is my tale.

When  (with a big L)  first noticed as a disease it was given it's name because the rash that was common to people with the disease made them look like wolves.




I have always been drawn to the fantastic and the impossible. I have always had an affinity for the improbable.

 When I was young I loved Thundercats and He-Man. I also loved Care Bears and the Wuzzles. As I got older I loved The Twilight Zone and The X-Files. Star Trek and David the Gnome were a way for me to escape.



The advent of the Science Fiction channel was like a specific boon sent directly from the gods to my television set.

During these times I can look to these things and find solace in the improbable because at one time my survival was improbable. All the progress we've made was made by people who ruled out the impossible and made it possible. Fantasies and dreams are the fuel of the future.


But seeing into the future is only possible when you aren't blinded by the limitations of the present. Focusing on what I cannot do is exactly what will prevent me from accomplishing what I am capable of doing. If I do need to wallow I can do that with some Muddy Waters, Ruthie Foster, Blind Willie, or anything from the Stax Volt. I can start a "bitch" journal and write until my heart is content. I can turn of my phone and sleep until I wake up with perspective. I can hit up iTunes U and learn something new. I can buy a coloring book and put those colored pencils to work. I have about 50 books I need to read. I have Comcast on demand and Netflix instant view. I am not hungry or exposed to the elements.  Perspective. I have this blank pallet in front of me with endless opportunities in front of me and as long as I remember that these hard days are temporary I can paint whatever picture my heart desires.  The point is there's a time for sadness because without it I could not cherish the happy days. But when that sadness has ended it's time for the FANTASTIC. I am bubbling with fantastic and I believe in the possibility of myself.

Journey

Starting a journey that will change everything as you know it is not done lightly. . . .

 Don't search for the answers, which could not be given to you now, because you would not be able to live them. And the point is, to live everything. Live the questions now. Perhaps then, someday far in the future, you will gradually, without even noticing it, live your way into the answer. Perhaps you do carry within you the possibility of creating and forming, as an especially blessed and pure way of living; train yourself for that but take whatever comes, with great trust, and as long as it comes out of your will, out of some need of your innermost self, then take it upon yourself, and don't hate anything.  --- Letters to a Young poet

Einstein once said that he wasn't particularly smart he just had the patience to stick with the question longer than other people. During the past few weeks I've had to ask myself what is my purpose. My mobility is limited because of new treatment so I have plenty of time to sit and think about what I will do when I am able to do anything at all. I have two options: be patient or go crazy.  Patience gives the reward of comfort in silence. Ease in solitude and respect for thoughts that are born of loneliness.  Crazy makes me nervous and gives me a rash. . . so patience it is.  Lupus is latin for Wolf. When the disease was first characterized people noticed the rash gave people a wolf-like appearance. I find a comfort in this insane label. The wolf-disease. Like there's a patient strength waiting inside of me, helping me cope with the myriad of craziness that is my body turning on me.


To maintain poise in times of pain has become my new default position. With every passing discomfort that I survive I am left with a fresh perspective on how to beat the next complication. When the pain has gone it leaves behind the essence of gratitude, and with the release of tears grief is washed away.

I have found that creating my own history and defining my own principles are enough to keep me busy for not just this life but also the next. When you think for yourself you are also tasked with keeping other people from thinking for you. True and introspective self determination requires a hyper-vigilance that is not easily maintained. My desired personality is a well designed machine, and my natural attributes escape as byproducts of clash between personality and desire. The combustion of those things create a existential substance I have yet to figure out how to properly dispose of. There is an array of emotions and feelings that escapes like smoke from every pore in my body and varies like the Endless family created by the fabulous Mr. Neil Gaiman.

I look at these feelings rising up around me and I process them as best I can. I wrestle with them. I lose to them and sometimes I beat them. 

I have a sharp tongue and a wicked wit. I have a hot temper and I'm prone to hold grudges. I offer forgiveness before I've healed from a wrong. When my heart has been damaged it heals in stone lines not skin, making it ever more difficult to access.

It is my hope that by projecting the image of who I want to be I will speak that person into existence. She won't be second nature, she will be first and only nature. I am already well aware that chaos and creation are both sides of the same coin. You can only hate someone if you have some feelings for them in the first place. Love makes us better and hate is a useless emotion. I am brave enough to look at myself see my faults and address them head on. I'm not afraid to be with the person I'm creating and I am working on not judging others because they aren't ready to do the same.

In times of deep and stoic sadness I have looked up from the bottom of what I thought was endless loathing and found there are still depths to go. With the realization that there is more that can go wrong I am confronted with all that can go right.  I am soothed by my unwavering sense of self. I am confident in my belief in my own rightness and I am dedicated to the path that I have drawn for myself. I see that as long as I have a beating heart there is blood in my legs and I can use them to walk with honor. I aim move in grace. I fight to be good and I pray that my regrets will be few.







"If ever there is tomorrow when we're not together.. there is something you must always remember. You are braver than you believe, stronger than you seem, and smarter than you think." ~Winnie the Pooh