The Troubles with Tracey!

After spending the summer and beginning of spring in the hospital I was ready to go home.  I was off work on a long-term disability and wanted to get back to that also.  Every time I said I wanted to leave I heard the same three words, "Maybe next week".  I thought I had enough bowel rest to last me the rest of my life, and removing the feeding tube from my nose could not happen soon enough.  I never wanted to look a bowl of jell-o or broth in the face again, but "maybe next week" would have to do.

Then a miracle occurred, it was finally next week!

But hold the phone!  My doctor said I could go home if I wanted to, but my tube was going to be staying right where it was, in my nose.  He actually smiled at me when he added that part.  Oh well, it could be worse right?  I was finally going to sleep in my own bed again!

The day before my exodus all of the plans were made.  A new pump was going to be delivered to my house, all of my scripts were written out, my family brought all of my presents and other belongings home and I said my good-byes to the nurses and other patients that had become like family to me.

Walking out of there knowing I didn't have to go back was blissful, but it almost felt like I was doing something bad when we drove away.  Seeing the streets and people coming and going was kind of strange, everything looked so clean and new, but as we drove into my driveway I thought I was going to burst with joy!

As I tried to walk up the stairs to my room I realized how long it had been since I had done any exercise.  My legs were shaking, my heart was beating and I had to rest part way up.  That gave me and our dog "Cookie" time to catch up and cuddle.  My room seemed smaller, but it was just perfect.  I laid down and thought I could feel the springs in my mattress, but I passed right out.

When I woke up it was back to reality time.  My new pump had been delivered and I was plugged back into the wall.  I had named my pump "Jo-Jo" in the hospital and christened this one the same.  The cord was not even ten feet long, so that was as far as I could go from the outlet.  This depressed me immenseley so my Dad got an extension cord.  I could move about the whole main floor without having to un-plug and re-plug myself back in whenever I wanted to go into another room. The battery didn't work very well, it wouldn't hold the charge.  My Mom mixed up my liquid TPN (Total Parenteral Nutrition) meals in a big bowl, then poured it into my bottle which went through the pump, up the tube and into my stomach.  She was awesome for doing this for me every meal, every day.  She also made my jello and broth.  When it was breakfast, lunch and dinner time and I was hungry (I wasn't always) I would get some help with my pump down the stairs and eat my liquid meals down in the rec room when everyone else was "chewing" their meals upstairs.  Everything smelled so good!

For being so good to me I shouldn't have paid my Mom back by grossing her out.  I was curious about my tube.  I'm a very curious person, that's just who I am.  I was standing in the powder room on our main floor looking into the mirror with my mouth open wide.  I called for my Mom to come join me for a minute.  She came and stood behind me as I told her to "Look at this" and opened wide again.   At the back of my throat was my tube, it was right there. She thought it was gross, but laughed.  But it kind of surprised me.  I knew that it would be there, but seeing it hanging there was weird.


One afternoon as I was in my room watching a movie (a friend that worked at a movie store brought me an unlimited supply) the smell of KFC came wafting into my nose from under my door. Everyone in my family had plans that night so my Dad picked up dinner.  Down I went to the rec room to eat my broth, my mouth watering like crazy while they were enjoying "finger licking good" chicken.  The horror.  Out they all went, it was the first time I was home alone.  The doorbell rang so I went to answer it, there were three of our neighbours standing on our porch.  I opened the door and they asked for my Mom.  I told them she was out and that I would take a message for them.  They said not to worry about it and walked down the driveway.  Then I heard it.  "Look at her", "What's with the tube?", "Does she have Cancer?", they didn't come by to see my Mom, they just wanted to get a good look at me.  I heard the rumour mills start spinning.  Why can't people just ask questions about things they don't know or understand, why do they have to just make up stories and whisper among themselves?  I have never understood that.

Shutting the door, I realized I was thirsty and opened the fridge.  There in front of me was the leftover chicken.  You know in movies when they show an Angel on one shoulder and a Devil on the other in times of temptation?  That was happening to me and as hard as I tried to not give in, the Devil won.  I was just about to find out why you aren't supposed to eat with a feeding tube in your nose.  The KFC skin is my favorite part and I was thinking what's a little piece going to hurt?  And then the idea of just chewing it and spitting it out came to my mind.  Just tasting it would be alright.  I ripped a little piece of skin off and popped it in my mouth.  Oh wow, it was heaven!  Then without thinking I swallowed.  Big mistake.  The skin got stuck on the tube and I started to choke.  You can't imagine the things that were flashing through my mind.   My parents would kill me if I died from something so stupid.  I saw newspaper headlines in my mind that read "Moron Girl Chokes On Chicken Skin",  panic had set in.  I was coughing and coughing and finally it came loose.   Sitting on the floor I thanked God for not taking me and sparing my family the embarrassment of such a stupid move on my part, and swore not to eat ANYTHING other than my broth until I had my doctor's permission.

It had been a long night and I was feeling pretty weary.  Again, without thinking, I took all of my bedtime medications.  These included, amomg others, a sleeping pill.  It's very hard to sleep with a tube laying in your throat.  Unplugging myself and walking towards the stairs I realized there was no way that I was going to be able to lift Jo-Jo and carry him all of the way upstairs.  But I tried anyway.  When I made it to the first landing (only two steps) a break sounded good, so I sat down and tried to pump myself up for the next big hurdle.  Then I woke up in my bed the next morning, realized that I must have made it here by myself, and felt really proud for a few seconds.  Who was I kidding, there was no way I got there myself.  I found out my Mom carried Jo-Jo and my Dad carried me.










 

Gut Instincts (cont)

Back to "Gut Instincts":

After getting nowhere with that doctor, my family decided to switch to a new family doctor, and I was ready for a real diagnosis. No jokes, just facts. I just wanted to be, and feel normal again.

I was losing weight rapidly, was nauseous all the time, had diarrhea multiple times a day, and the pain was getting worse. I was told to quit my dancing lessons and gymnastics by my old doctor. I wasn't happy about it, but I just didn't have the energy anymore. I was also having such bad joint pain that I was finding it all very difficult anyway.

I left my first appointment with the new doctor, had some blood drawn and x-rays and was hoping that he would be the answer to my prayers. But he didn't help either, he thought that I was a hypochondriac, or that my symptoms were just psychosomatic. And because he was an M.D. and didn't think anything was wrong with me, my friends and family decided that he was probably right. That didn't sit very well with me, they treated me like I was crazy and just making it all up.

High School was ending, and I was working two jobs. I was getting worse and kept going back to see the new doctor over and over again, but nothing changed. At one visit my doctor was away so I saw one of his partners instead. I thought maybe he would have some new ideas. Oh, he had ideas alright, he told me all I really needed was a good shrink! and he gave me a script for some antacid. Really helpful, not.

When my doctor got back, I went to see him again, and told him that I really believed that there was something inside of me that wasn't supposed to be there. I told him that I wanted to go and get an Anatomy book, cut myself open, and remove the object of my pain. He looked at me like I was nuts and just sent me for more blood tests which came back negative for everything.

Because of my weight loss, anorexia was brought up. I knew that wasn't the problem. I swore up and down that I wanted to eat, was hungry, but it just hurt too much every time I ingested anything.

I started smoking pot to help with the pain, especially at bedtime because the pain would wake me up so many times during the night, that on top of being drained, and feeling weak from not eating, I was exhausted from being up and down all night.

I graduated from high school, got a new job with an Engineering firm and quit the other two. The company was owned by a friend's Dad and I loved it there. I should have been healthy, happy and enjoying my new life.

But with friends, my boyfriend, my family and my doctor thinking that I was faking my pain, I started to doubt myself at times and wondered if I was just imagining it all, or maybe not taking care of myself properly. That was really hard, thinking that I was doing something to cause this all to happen to me. I decided to make some changes to see if they would help.

I started running again, that had always been one of my favorite ways to get exercise. I started to make healthy lunches (and making myself eat them) to bring to work with me instead of going to the fast food places with co-workers. After a couple of months of implementing these changes I was feeling worse. The pain was increasing and I was literally spending hours a day in the bathroom with diarrhea.

This was a really hard and lonely time for me. No one wanted to hear about my pain and other symptoms anymore. Some friends stopped being there for me. I would sit cross-legged on my bedroom floor and meditate on the pain and it's location. The worst pain was in my lower back, just above my belly button and in my lower pelvis. I had been doing this for months and I really could feel like there was a foreign object inside me that needed to be removed. I knew that I wasn't crazy or imagining it. I knew that there was something really wrong and I wasn't going to stop bugging my doctor until we had answers. I was going to listen to my "Gut Instincts"!

I decided that I just wouldn't talk about it anymore, and no matter how I was feeling I would pretend that I felt great. It was very stressful, and I would cry myself to sleep some nights praying for God to either heal me or let me die so that I wouldn't have to suffer anymore.