"My Way"

  My Way, much more than a song by Frank Sinatra, it also described how I dealt with this hard time in my life.  I was in my early 20's and a dialysis patient.  I hated everything and was jealous of everyone in my life.  I became what the doctors described as non-compliant.  Non-compliant meant that I did absolutely nothing to contribute to me getting and staying healthy.  I ignored the doctor's advice and orders.  I refused to take the pills.  I threw them in the trash can to give the appearance that I was taking them.  I hated the regiment I was on.  I refused to be controlled.  The only thing I did that had to do with my health was dialysis.  That's only cause I couldn't get arounnd not going.  Other than that, I ate, drank, and did what and as much as I wanted on a daily basis. Withoout caring.
  I depresssed, smiling during the day and crying at night.  I couldn't take it anymore.  The drinking wasn't doing the trick that it use to.  So, I moved on to marijuana.  I smoked like a chimney.  Whenever I was down, my happiness was a smoke away.  I think the drinking and the change over to smoking, and at some points both at the same time attributed to the a lot of the earlier hospitalizations.  Along with the emotional pain I had, there was physical pain.  There were days when I could hardly move.  Stairs were a challenge. I would have pain from my ankles from my ankles to my shoulders.  There were days when I collapsed when getting out of bed cause my knees were in so much pain.  Which is another way the weed served its purpose, as an on the spot pain killer.  But lets not kid ourselves here I knew what I was doing, it was just another excuse to get high.
  Once again I was out of control, and nothing exceeds like excess ( at least I think that's how that saying goes).  To get through four and a half hour treatments, I would show up at dialysis high.  I know your jaws are dropping, but yeah I would show up totally STONED.  It was amazing how fast the time went by when I was in a different state of mind.  There physically, but absent mentally.  But, this bad habit had to come to a head at some point.  That point for me was when I passed out after a treatment.  One thing about marijuana is that it drops your blood pressure. My BP was low already, so getting high made it even lower, which results in blurred vision and lightheadedness.  Mix that with a physical tolls of dialysis and you can see the danger.  So, that night I was walking to the scale, all of a sudden I remember waking up on the floor.  In hindsight, I'm glad I passed out inside the treatment center, because I had full intentions on driving home that night.  When I was coherent enough, I got an on the spot intervention.  Turned out I was only fooling myself.  They promised to keed this insedent a secret if I never came like that again.  I never did it again.  I didn't stop smoking, I just never went to dialysis high.  I guess I couldn't keep up doing it "my way".

A Change In Self

I chose the center closest to the hospital.  That's where my doctors were, and most importantly that's where the hospital was.  If anything happened I was an elevator ride from the emergency room.  That was the only comfort I felt in the beginning.  Sitting in the waiting room was very nerve racking.  I could here my heart beating in my ears, I was shaking, and I wanted to throw up.  Hearing my name, walking through the room I had my head down, but I could feel every one's eyes on me.  I'm guessing its like being the new guy on a prison yard.  I knew what they were thinking, "How old is he?", and "why is he here?" 
I didn't talk to anyone in that place for at least a month and a half to two months.  I walked in with my headphones on.  Walked out with them on.  One word answers to doctors and nurses.  I wasn't interested in making friends.  I didn't want to tell my story nor did I want to know their story's.  Not interested, didn't care, I got my own sob story.  I was having problems.  I was confused.  I had questions.  Not easy questions.  Not questions that I can go to mom or granny to get understanding.  My questions were for GOD.  I know you're not suppose to ask "why".  But, I wanted to know why.  "Why is this happening to me?"  "What did I do to deserve this?" 
When I didn't get better, or get the any anwsers (sadly  but truthfully), I turned my back on GOD.  I had nothing to say to HIM.  Is this how faith is rewarded?  With pain?  With suffering?  My heart was black.  People would say to me, "GOD would not put on you more than you can handle."  Really?  That's what you have to say to me?  I was 16 facing kidney failure.  I was 17 doing chemotherapy.  Now, I'm 20 with total failure, and looking at a lifetime of dialysis.  I'm tired, and my body is tired.  I haven't breathed easy in a long long time.

The Next Episode

It wasn't good.  Driving back from Florida, and basically having to go straight to the emergency room.  It wasn't good.  Spending more time in the hospital.  At this point I chose private rooms, because of the isolation I got at night.  One night my sweet isolation was broken by doctors.  If you've spent any time in hospitals, its not good when a team of doctors barge in after hours.  The question: "Do you know what dialysis is?'  "In a few words it does what your kidneys can no longer do on their own."  "I'm in total failure?" "10% function."  "How long do I have to do this?"  "There are cases where patients have returned to full function, but its rare."  "But, you will most likely have to look forward to this for the rest of your life."  And, they walk out.  Leaving me with pamphlets and a movie of what's gonna happen in the morning.  Once again, I was alone, afraid, and angry.  I didn't sleep for the rest of the night.  The next morning I was wheeled down to radiology for catheter "surgery". 
The first treatment was scary to say the least.  I remember seeing mom's face fighting back tears to point she was turning red, and had to look away.  Then she left, as much as I didn't want her to, she left.  I cried until my body gave in to the procedure, and all I could was sleep.  When it was over, I was in pain down to the bone.  I couldn't walk.  All I could do is sleep.  The next day I had time to register the last 24 hours.  All I thought/felt is that I just can't catch a break...If it ain't one thing its another.  The rest of my life. Seriously?  I really didn't think I had it in me.  My time is no longer my own.  3 days a week, 4 hours a treatment, 12 hours a week, 156 days a year, 624 hours a year.  So I'm left with 209 days that are all my own.  Not counting time to time hospitalizations.  I don't get alot of me time. And now that I'm being released, this is what it is.

The Time In Between

When I was finally finished with chemo, I had graduated from high school and I was a freshman in college.  Doing everything in my power to appear normal on the outside, while struggling with the turn of events that had taken place place over the last couple of years.  I had lots of fun during this time in school.  Had I known my fate, I would've pushed the limits even more than I did.  In retrospect, it was a good thing that I hadn't, because the consequences would not have been good.  In my down time, I didn't talk to anyone.  I really don't know how much my best friend knew at the time.  I just knew that my health as far as I was concerned was G-14 classified.  I felt like talking isn't gonna change the situation so why go through it. Plus, the one person I wanted to talk to wasn't emotionally available. She shut down too.  So, here I was left to walk this road all alone.  Which led to me doing the only thing I knew to do at the time to feel better, drinking.  I drank A LOT!  What can I say, it made me feel immediately better.  There was nothing to think about when I was drunk. No kidney issuses, no need to search out someone to let my pain out to, nothing.  Being under the influence was as good as it got at the time.  The were times I drank til my sides kidneys hurt, and I kept dranking til they stopped.  I remember on my 19th or 20th birthday being so drunk that all I could do was (barely) walk into the club, go straight to the restroom to throw up, and spend the rest of the night passed out on a table.  Luckily I had good friends that took care of me.  This was just one incedent, and not the one that made mw feel like I was doing too much.  Here I was self-destructing.  Not even old enough to buy liquor, and I was a certifiable alcoholic.

"You have Lupus."..."What's that?"

Lupus is an autoimmune deficiency disease.  In loose terms it means that my white blood cells can't distinguish the difference between an actual infection and healthy cells and organ tissue.  In my case I had strep throat.  Oddly enough, the strep throat virus cells resemble the kidneys.  So after the infection was killed, my white blood cells turned on my kidneys.  At that time, I didn't know what that meant to me, but by the look on my mom's face it wasn't promising. 
The explanation of what was happening immediately turned into ideas on how to treat and live with it.  I was scared at the idea that there is no known cure, just methods of control.  The first of which was chemotherapy and steroids.  The steroids weren't all that big of a deal, but the chemo was a totally different story.  For some reason, it made feel like I was gonna die soon.  I wanted cry on the spot, but I couldn't, I was numb at that point.  Not even a month out of the hospital, I have a disease called Lupus, and I'm facing chemotherapy. The treatments were once a month for three months, and then once a month every other month for six months.
Going to the treatment center was a rough mental workout.  I only smiled to keep from crying. Everything in my body screamed run.  "I don't wanna do this", "I don't wanna do this", "I can't do this."  That's all I heard in my mind.  One time I sat in my car and bawled my eyes out, cause I just didn't wanna do it.  But, I did it anyway. Each time was harder than the last, especially when I started going by myself.  Mom was there the first time, but after that it was just me. An 18 year old kid sitting in a chemo center alone, afraid, and angry.  That place stole and that process made me bitter at life.  It stole my will to point that I SERIOUSLY thought about suicide.  I eventually came to the conclusion that my death by my own hand would cause more pain than relief.  So, I soldiered on.

Kidney Failure!

When I was 17 years old I spent two weeks in the hospital. Lying in the bed day after day not knowing why I was there, added to my anxiety and depression.  The only thing that was clear was that my kidneys were failing. At this time, it wasn't Lupus. I was x-rayed, needled, and CAT SCANed to death just to be continuously misdiagnosed.  This is when the priority simply became to jump start my kidneys.  After showing signs of improvement and later total recovery, I was released from that prison without bars. Going home I was consumed with to goals: Getting back on the basketball court and getting caught up on my school work (in that order). I remember coming home from school, and doing an hour of homework, and then going to park for two hours of basketball (I was obsessed with playing). It eventually came back to me, kinda like riding a bike.  I've been asked, "why was basketball so important to you?" It was my get away, my love, my stress reliever.  It's what I did when I was angry. When I was on the court (especially by myself) it was my fortress of solitude.  I didn't know that all I had was about to soon come crashing down all around me...