Wednesday, August 15, 2012

Paths to Hell Aren't Clearly Marked

    Days fell into a bleak routine. Hero Hottie would typically leave early for work, dark shadows under his eyes and a haggard expression on his face. Did he smile at all during this time? I don't recall. Joy was one thing missing from our household. It had left on some midnight train, and we didn't know if it had a return ticket.
     I would sleep in. Deep bone fatigue filled me and I knew as soon as I pulled myself from the bed the pain of the day would start. If I hadn't had two small children I would have curled up in a ball under the covers and never got out of bed.
     As it was, I had a four year old Bean and a two year old Abu to take care of. And if you can imagine any more stress in this situation, three months before my first fistula surgery, Abu had been diagnosed with type 1 diabetes.
      Four to six shots a day. 8-10 blood sugar checks a day. The heart wrenching agony I felt as I watched my bright and beautiful toddler skipping around the house without a care in the world; her eyes innocent and clear...
     And then with each shot, with each blood sugar poke, watching an awareness cloud that innocence as she realized that life wasn't as carefree as she assumed. I would cry at night, watching her sleep. Snuggle her close and wonder why in this 'advance' age of medicine that our best cure for a malfunctioning pancreas was numerous, violent invasions into the skin. Insulin can't be swallowed or inhaled; it has to be injected.
     So many times a day I had to hurt my daughter. It killed me emotionally. To look at my baby, Abu who was the kindest and gentlest soul I had ever met; and have to cause her physical pain every few hours.
     She was so brave too. Right from the start. This child didn't hardly complain, she didn't fight me; I didn't have to hold her down to give her the shots. No, she would stand still, like a little soldier in attendance, offer me her arm and stare into space.
    At the age of two.
    How could she be so strong? But there was something I started to realize about Abu; her inner faith is far more solid than mine. She doesn't struggle with it as much; she simply believes in good and that everything works out. And there is a bit naivete with that but she feels it in her soul.
    At night she is the one who reminds us that we have to remember to say grace. She is the one who always offers forgiveness. And perhaps even at the age of two; that inner strength is what kept her from turning angry and bitter over the hand she had been given.
    Perhaps it's her faith. And that's something I admire greatly. To have such a deep faith at her age...

    Her diabetes is also one of the reasons I would drag myself from the bed. I wasn't going to let her down and not take care of her needs. She needed shots and she needed them on time so they would give her the best control over her blood sugars.
    We would have breakfast, but not at the table like before. The girls took to eating it on little trays while they watched television.
    Suddenly, they were watching a lot of television. We didn't have cable, so PBS was the only channel that offered us anything with kid stuff on it.
   That and I would watch court tv. What the hell? Me, who didn't hardly watch television ever. I was now addicted to shows that featured people arguing and fighting and were in general miserable.
   
    Then the fun part of the day would start. My Mom would come over to pack my bottom. And this gets a bit graphic; but the cotton gauze that went in the night before would have to be pulled out. This wasn't quite as painful but I would go into the bathroom and cry while I pulled and pulled. Then I would feel like throwing up because it was always trying to get infected- it was nasty.
    Then a bath to soak the raw tissues. And sometimes I would stay in there for longer than the fifteen or twenty minutes I was told I needed because I knew what was coming as soon as I stepped from the tub.

    Mom would play with the girls while I did this and then we would get them busy with something and I would lay on the bed and close the door. I hate to think how much they heard, even though I would bury my face deep into my pillow to muffle the pain. But they weren't stupid, they knew their Mom was in a lot of pain.
   And it changed their life. It would take years for them to heal from this horrible experience of watching their Mom suffer with so much pain.

   The first two months after the surgery things slowly started looking up. Like little tiny shoots of hope pushing bravely through the spring snow. I started feeling better in small, barely measurable inches but it was there. The wound was healing in equally slow measures but it was trying to heal. As the wound healed, the inches of cotton gauze I needed shrunk.

--And then the middle of this; zombies attacked and ate the whole town. We blasted any that came to the door with shotguns and then took off in the biggest kick butt pick up truck we could steal. It was awesome....No, that's not what happened. But I was getting too emotional writing this and zombies always make me feel better...

   For the first two months I was taking a narcotic painkiller for the pain. This settled well with my stomach and didn't cause me problems with my Crohn's. But after two months the doctor was worried I might become addicted to it and switched me to Ultram.
   It took ten seconds to write that prescription. Ten damn seconds. I can still remember his surgeon hands, under the fluorescent lighting of the doctor's office, pictures of muscles on the wall, barely taking a moment from his life to write it. The handwriting was atrocious, it was more scribble than penmanship but the pharmacy filled it.
   And I started taking it.
   Who knew I was actually taking pills that led straight to hell.
   

Tuesday, August 14, 2012

The Start of Something Terrible

   It was the end of 2004. Abu was one and a half and Bean was three and a half. It was Thanksgiving and I was having to sit on pillows to keep the pain in my bottom was ripping through me and destroying any semblance of a holiday.
   I hid the pain well...but I was worried.

    I have Crohn's disease. An ugly, brutal disease that can wreck havoc with your life. It takes the simple things...like eating and using the potty...and turns it into something wicked and vile. I was diagnosed when I was fifteen...just a teenager. It hit me hard, fast and ripped my life apart so quickly I didn't even know what had happened until a year later when I was finally allowed to be a teenager again.
   In one month, I went from finally having dance lessons...the first time in my life and something I had waited for all my life...to sleeping almost twenty four hours a day. I was stricken with a digestive tract that didn't want to digest, caused me gut wrenching pain, and made me lose so much weight I had to go on liquid supplements for months just to regain the pounds.
   I was sick. Lonely. And humbled. Suddenly, my know it all attitude...just my regular, teenage moods were left behind with my sudden awareness that life is short and should be savored.
   When I turned sixteen a year later...I was just happy to be alive. I hung with friends, finished my homeschooling course and graduated early. With some natural healing applications and learning to control my stress levels, I had the Crohn's under control without drugs. A damn near miracle in the world of Crohn's. And something I didn't take for granted.

    Until 2004, I had very little trouble with it. An occasionally mild flare up here and there. But I didn't need medicines and I didn't have any surgeries to deal with it. Sometimes I think any new doctors I saw didn't believe me when I said I had Crohn's because I didn't have a long list of surgeries and hospital stays to prove it.
 
   Then in 2004, I think two years of stress and nutritionally poor food caught up with me. It started in 2001 on 9/11. I was working for my Mom at her fulfillment business. People hired us to handle their orders of merchandise they sold. And business was good.
   Until that fateful day. I remember holding Bean, who was almost four months old, in front of the television at work, watching and crying and never realizing that this day...this day that I write this blog...would connect with that horrible, wretched day.
   What a black and dark day. There is nothing more I can say about that day to explain it. We all feel it. We all remember.

    But the very next day our orders dropped. And they continued dropping as the people and the economy struggled to find firm footing again.
   And the orders kept dropping until May 2002, when my Mom had to close her business.

   We lost the family business. I lost my job. And Hero Hottie had to put his dreams on hold to go back to work for a measly wage that didn't support us.
   We moved in with my parents after selling our house and struggled to regain our footing. But the money wasn't there and the quality of food we ate quickly went down hill. The stress of sharing a house was incredible even though I love my parents.
   And then Abu decided it was the perfect time to make her appearance. And I became so sick with that pregnancy that I had to stop working, just after finding a job and trying to enter back into the workforce.

    Fast forward to Thanksgiving a year and a half after Abu was born. I thought my Crohn's was doing fine. But I know the bad food caught up with me and now I was in trouble. I developed...and excuse me for being blunt...fissures on my bottom. Cracks in my skin that eventually developed into fistulas. Which are nasty, horrible things. It's where tubes form under the skin leading from one place to another. But they're not supposed to be there. Mine were from my rectum to the outside of my bottom.
    Nasty, painful things that leaked with infection. Constantly. And here I was with tiny children and all I could think about was the pain.

    After a few courses of antibiotics it seem like they might heal. We finally managed to buy a house and moved out. I was going to start a daycare, so I could stay home with my children, and we were on our way. Finally. After three long years.

    And then...the fistulas wouldn't heal. Within hours of going off the antibiotics, they would fill up with infection and the pain would be intense. I remember one time the pain was so bad I blacked out. That's how rotten it was.

    So I did what any 21st century woman does. I got on the Internet and researched. Until I found an answer.
    Unfortunately my answer was surgery.
    So I bullied my GI doctor for a referral, because he thought my only path to healing was taking Remicade, which has a list of side effects eleven miles long, including may cause cancer. Because I wanted to trade my fistulas for CANCER. On top of that, the instructions for taking Remicade state "Do NOT take if you have an infection of any sort...even a hang nail." That sounds severe. My entire bottom at this point is heavily infected and the doctor wants me to take what???

    No, I would try my luck with a surgeon. A guy who enjoys cutting people for a living. I try to avoid people with long knives, short knives, any sort of sharp object. I don't usually volunteer to allow them to actually cut into me. But here I was, grateful to be seeing him.
   He asked me to pull down my pants and underwear, bend over the table and forget the concept of modestly....and in two seconds he said the only way to deal with the fistulas was surgery.
    I knew that. I read it on the Internet.

    Surgery I had. It was easy and I went home in a few hours. What I didn't know was how a fistula heals. And I have to tell you...I wouldn't wish a fistula on my worse enemy. That's how hellish the healing time is. It is hell on Earth. True torture is the modern day process of healing from these bitchy things.
   Let me explain but it is gross and nasty.

   First, the infected tissue inside my bottom was a goner. There is no saving that. The tissue is dead, nasty and has to be scrapped away. Since I had struggled with this infection for over six months before I had the surgery the area of my bottom that had been taken over my this infected tissue was huge. Inches wide, inches long, and inches thick. The doctor had removed a good deal on my interior butt cheek.
    Now, to get this empty, vast area to heal, I had to have either Hero Hottie or my Mom, take long strips of cotton gauze; about two feet of it; and slowly, methodically push it into the wound.
    The butt has many, many nerve endings. It's rich in nerve endings and I could feel every single one as the cotton gauze would touch the raw, open wound into my butt cheek.
    I would cry. I would scream. I would nearly black out from the pain. I would pray for strength. I would curse God for allowing this to happen. I would bite my lip until it bled. I would wonder what the hell kind of life this was.
    And I would go through this whole line of thinking in the ten minutes it would take to carefully stuff my wound.

   On top of this hell...it was a killer to my relationship to Hero Hottie. The embarrassment I felt having to allow my husband to clean my wound and tend to it was incredible. If we thought we had our tough times before in our relationship...this would test it like nothing else.
   He didn't mind taking care of me. But it was difficult. I could not work at all. Our income was crap and now we had a mortgage. Our medical bills sucked because I didn't have insurance.
   And he was working two jobs, helping with the house and kids, and tending to a wife with a serious medical condition.
   He was exhausted...drained emotionally and physically... and cut off from his wife because I wasn't mentally there anymore in the relationship. How could I be? Even with massive pain killers...all I could think about was the pain. And the twice daily cleaning on my wound. I tried to be a good mother but I missed so much of them being little.

    And the only thing that kept me going was Bean and Abu. Because I couldn't fail them. Even though every day seemed like a huge failure. My mood was going downhill fast. And it didn't seem like it was going to get any better.
    Luckily, I couldn't see just how bleak and dark the future was about to come. I would have lost all hope than and there.

Monday, August 13, 2012

Because I hate hospitals

    Hero Hottie has been bugging me to write about my time in the hospital for a while now. I think for two reasons:
1. It is a deeply personal and upsetting time for me and writing about something that has happened to me helps me to deal with it. I suppose that's the artistic side of me. That's why I always tease people about not making me mad because then I'll make them the villain in my next story. I am just joking. A little bit. :)

2. My illness and subsequent stay in the hospital was a time of great growth and realizing just how strong I could be. And if sharing something of that magnitude can help someone else through their struggles, than it should be shared.

    But I drag my feet. It happened six long years ago. A lifetime. And I still avoid thinking about it, talking about it and writing about it. I would prefer to keep the scars nicely hidden behind a facade of normal living and pretend that I wasn't inches away from the white light. Literally.
    I think, and this is going to sound corny, but only love held me to this side of life.

    Unfortunately, I can't birth Baby Blueberry at home with a midwife. Which in my state is pretty much illegal and with having torn my placenta not the best option for me- so off to the hospital I will be going sometime in the next four weeks.

(Are we that close already? Whew, I can't believe it. And I give thanks everyday for it too. Back in April and May when I was spending hours on the couch, praying for Blueberry, I wasn't sure if I would make it this far with my heart still intact. )

But the closer I get to having to stay in the hospital, even for something as natural as birth, the more I feel long buried anxieties and fears start to stir. I have moved so far away from those long days when I thought I might die...or so I thought. Apparently, I have not moved far enough. Again, time can only soften memories, help take the sharpness off of them, dull the edges....time can't heal.

Since I'm planning a natural birth, just like with Bean and Abu...this means for some crazy reason I'm choosing to feel all the pain of childbirth. To succeed in natural childbirth, you have to admit that to yourself--you can't sugar coat it. You can't just say: 'I'm having this baby with no painkillers. Piece of cake."
   No. You have to say...aloud...I'm choosing to feel EVERYTHING.
   Why do I choose this?
One: I have a Mom with chronic pain..it never goes away. Childbirth pain does goes away.
Two: I like to be in control of my body as much as possible. Having Crohn's disease is a bitch and sometimes leaves a person without any control, so I'm not one to give any more away than I have to.

Three: I hate needles. Especially in my spine. I probably hate needles in the spine more than the pain of childbirth.



For me to feel like I can enter the hospital and do this without begging for pain relief...because trust me, I did finally break down and start to want an epidural during my last labors. The pain is just so intense but I was so close I couldn't and Hero Hottie and the nurses were wonderful in keeping me focus on the end goal.

I have to be strong emotionally. And I don't feel strong on the inside when I start to think about entering the hospital. I start to feel weepy and fearful and all the horrible memories...every single one that clouds my mind at time...slams full force into my spirit and reminds me that I almost died in that building.

I can't have THOSE memories trying to be louder than the new -wonderful- memories I will be forming of giving birth to my precious Baby Blueberry. So how to quiet them?

How to silence them? Cut them off? Will them away?

They are a huge part of who I am today, regardless of how I feel about that time. I know this is going to show my geeky/nerdy side but I'm going to relate this to a Star Trek movie. I know, forgive me but I was raised on Hamburger Helper, bologna sandwiches and reruns of Star Trek.

In either the fifth or sixth movie, the bad guy is offering to 'erase' the painful memories of the main cast members. Offering them a life without all that emotional baggage. How tempting. How peaceful. But of course, Captain James T Kirk, our hero, refuses such a thing, even though is past is littered with painful memories. Why? Simply because he wouldn't be the person he is without those memories.

Would I ever repeat my stay at the hospital? Hell, no. I'm not crazy. But did I learn from it. Yes. Is it a part of me? Absolutely, without question. Even my writing is better because of it. My relationships. My understanding of what is important in life.

But it does still have a hold over me. Yes, and that's what I need to finally let go of. So when I enter the hospital in the next few weeks, I'm not dwelling on the horrible but I can concentrate on bringing this new, unexpected little person into my life.

So hopefully I don't bore my readers too much with such serious posts over the next weeks. And I hope you don't mind me being so personal. And I do hope that you find a positive message out of it.
And I promise I won't use anymore Star Trek analogs either. But I can't promise I won't drag something else equally nerdy or geeky into the mix.