Tuesday, November 22, 2011

I swear I'm falling apart here!!

I thought I would give an update on my current health situation. I know some people are interested in the details and since I'm not shy, why not share, especially if it might help others understand this cruddy disease.
I guess I'll start from the beginning so that everyone knows when I started on this journey.
I can't remember a time when I didn't have issues with my stomach. I remember as far back as third grade having those moments of worry. One of the biggest issues I face with this disease is the fear that it causes. The fear of having to use the restroom and there not being one available or having to use it and not being able to. As you can imagine being a small child and having that fear puts a damper on being a student. Always worrying about whether your teacher would allow you to use the restroom in the middle of class or a test if needed. My health was never serious back then, I was just always in the restroom. My Grandma Murphy affectionately called it my office and upon her death a few years ago, my family thought it was appropriate that I be given her stash of toilet paper. She was a child of the depression era and she liked to keep stocked up on supplies...lol.
I guess it was because my issues never got severe that my parents never thought it was necessary to take me to the Doctor. I often wonder how different my life would be had I have been diagnosed with my disease as a child. Would I have done better in school, would I have excelled in sports, had boyfriends...gone to my senior prom? Most importantly, would my health have detorirated as quickly as it has in the last five or six years if we had been treating it since childhood?
I was barely twenty-one when I started getting seriously sick. It started slowly and by the spring of 2005 it was in full swing. I was in constant pain, unable to eat therefore losing drastic amounts of weight, there were times when I was so weak I couldn't even stand up. Through it all I refused to admit I had a problem. I would wake up each morning telling myself it couldn't continue, that I would give it one more day and I would be better. It didn't get better, it got worse. I had times when I couldn't control my bowels, moments that I didn't even realize because it just happened. Never in public thank God.
We had just said good-bye to my Grandma Hockman, I had just moved in with my cousin Heather into our Grandma's house, and most importantly, Daniel and I had just started dating that spring. Can you imagine the fear I was facing and also trying to hide it from the boy that I liked? This went on for months. Heather and I had a lovers spat, which we tend to do every few years, we're so much alike its ridiculous somtimes and we have horrible, horrible Murphy tempers...lol. I moved in with Daniel and then all hell broke lose. I was so sick one night, I was almost uncoherent, unable to get off of the couch. It was then that I knew I couldn't go on any further. I knew I had a problem and I needed to get help. I made an appointment for the following Monday afternoon.
Obviously making an appointment was the right thing to do, but I knew for sure it was the right thing to do after going out to dinner with my Mom and Step-Dad for my birthday dinner. Two or three bites into my meal and I was ready to die, they both looked at me and I remember my Step-Dad saying it was time to see the doctor. Here are two of the people who ignored that I was sick growing up finally realizing that maybe I was afterall and that it was time for me to get help.
Fast forward to that Monday. I barely made it through work that day, did I mention that I worked full time during this entire ordeal. I still to this day don't know how I did it, but I did. I will forever remember that appointment as it became quite memorable. The place was packed, no bathroom in the waiting room...Crohns patients HATE that by the way, and they were running behind. I remember signing in for my appointment and watching each and every person sign in after me and then it happened. A person who had signed in well after I had, got called back to see the doctor before I did. Lord in heaven I about came unglued, actually marched my sick self up to the receptionist and asked what in the hell was going on. I caused a scene and didn't give a care in the world, that's how sick I was. Normally I don't like bringing attention to myself. It worked though...I got called back right away...lol. The nurse stopped me in the hall to check my weight, height, and lastly my temperature. She took my temp, looked at me and said "uh, you are most definately sick aren't you?" "No lady, I just thought I would drop by for a visit!" I didn't really say that, but I thought it gosh darn't. The adventure got better though, they had a girl come in and check all my vitals and stuff. She was a student and it was her very first day on the job. The head nurse decided that I needed to have some blood drawn and thought it would be a good idea for the student nurse to give it a shot. We didn't know then how hard of a stick I was nor did we realize how dehydrated I was. Poor girl, she didn't stand a chance. I passed out and had what they think was a full blown seizure. HA, scared the girl so bad that they told me she never came back to work...lol. I guess if you can't stand the heat then get the heck outta the kitchen right?
I knew I was in big trouble shortly thereafter when I heard my Doctor on the phone with the hospital. They wanted to send me by ambulance but I had my car there and I just wasn't mentally prepared for that. He allowed me to go home but I was to be at the hospital for testing by 7 o'clock that night. My Mom and Grandma Roock went with me and by the time we were done I was exhausted and miserable. Mom had the audacity to stop by Taco Bell on the way home, now if that isn't cruel I don't know what is.
Monday came and went and Tuesday was a new day, a new day to drag myself into work. Did I mention I was new to this full time job and had no time off of work? Once again, not sure how I managed to do it but I did. I got through the day and was on my way home when my phone started going crazy. Everyone was looking for me because apparently my company received a call looking for me, still to this day don't know if it was the hospital or the doctor, but because I wasn't answering my work phone, they paged me. The page went to twelve different buildings and since I worked with half my family and they knew I was sick, they got crazy. They called my Mom and she called me. Of course when I called the Doctor to see what was going on they had no clue about a phone call and had no news for me. It drove my Mom crazy and she in return drove me crazy because I had no clue what to tell her.
The phone call came that evening and the only part that I remember hearing from my doctor was that they had discovered a mass on my liver but he was pretty confident that it wasn't going to be cancer. Cancer...he had said the word that I had feared the most during this entire time. All of those moments when I was in so much pain I thought I could be dieing were becoming reality. Maybe I really was that sick? How in the world was I going to get through this and most importantly how was I going to call and tell my Mom who was currently sitting in the high school bleachers watching my brothers play soccer? Especially since we had just had a cancer scare with one of my brothers who had discovered a lump on his neck. Two kids sick in such a short time span...I couldn't imagine. I made the call and I still to this day do not remember a single word I spoke or single word she spoke. After the call I sat quietly on the front porch waiting for them to return home. I don't remember what my thoughts were other than that I was scared to death. I do remember them getting home and one by one my brothers, sister, Mom...who had been clearly crying, and my step-dad marched passed. Each one with a look of distress and not knowing what to say. My step-dad was the last one in and before going through the front door he bent down, put his hand on my shoulder, and told me everything would be ok and proceeded inside. This side of my family does not do emotion. We don't hug and kiss and say I love you. We know we're loved, we just don't show it or express it so you can imagine for me what that hand on my shoulder meant. That hand on my shoulder was my hug, it was my kiss, it was my I love you, it was me realizing that they were just as scared. My Mom reached out to my Aunt who had battled thyroid cancer and she came down in hopes to reassure me that everything would indeed be ok. We didn't even know if I had cancer for sure but we knew things were going to be scary.
I made a call that night to my boss and left her a very detailed message about what I had been dealing with and what was going to be taking place. I stressed that I was fearful of losing my job and losing my insurance but told her I didn't know what else to do. She called me that morning and actually scolded me for not telling her sooner how sick I had been and reassured me my job was not in jeapordy. She told me about FMLA and told me how to go about obtaining it through our HR department. She took a weight off of my shoulder is what she essentially did. I cried and held her tightly when I had to say good-bye to her a few months later after she had learned she had been laid off from the company.
I had an appointment with a digestive specialist that day, which once again I won't forget. My Mom, Grandma, and Aunt went with me and I remember the four of us being stuffed into a tiny exam room where we discovered that I had somehow stepped in dog poop before my appointment. Talk about embarrassed...the smell was horrendous and I can only imagine what the doctor and nurse must have thought. I also remember the poor nurse when she was trying to schedule my very first colonoscopy and my Mom telling her to make it late in the afternoon because she had to take a nap. Seriously, I could be on my death bed Mother and we are scheduling things around your nap schedule??
Anywho, we made the appointment, I spent the next day doing my prep. The drink was horrible, and the day spent in the bathroom was even worse...talk about having a sore tushy! Friday came without fail, I was a little nervous about my first colonoscopy. I mean seriously, who likes the thought of having their tush in full view for some strange doctor to view? All I could think of was, is it clean enough, do I have any unsightly blemishes and then I would remind myself that surely there are worse looking butts out there than mine! At least mine wouldn't be hairy!! HAHAHA
My nurse was awesome, she got my IV in on the first try and I remember that it didn't hurt one bit. I actually asked her if she could always be the person who gave me shots and IV's and then they wheeled me back. Of course I don't remember much after that...hello propofol or whatever that lovely white liquid is called. I know why Michael Jackson liked you so much!! Only my Mom can really tell the story after this point. I was so drugged I don't remember much. Apparently I asked the same question over and over again. If you have ever had a colonoscopy done you know they won't release you until you start, dare I say it, pass gas. She kept telling me to pass gas but wasn't really rushing me at this point. That was until they wheeled in the 300 lb. hairy, middle aged man who was brought in by his Mom. He wasn't shy about passing the gas like I was, and after he started Mom was hell bent on getting outta there and quickly. Seriously, this story gets told at almost every holiday dinner and each time is like the first, she can barely get through the story because she finds it so freaking funny.
Of course things weren't so funny after the Doctor delivered the diagnosis. I don't remember either of us saying much and honestly, I don't think it really upset me as much as it would have now. I was young and after years of always wondering if my problem truly was in my head and not a reality, here I was with a diagnosis. My problem had a name and being truly naive, I assumed there would be a cure or at the least medication that would make me all better and I would never have to worry about going to the bathroom again, right? RIGHT? Wrong!
If I only knew then what I know now, my reaction would have been much different. I wasn't stupid, I knew all about the complications. I knew most would endure at least one surgery because of this disease but I was different. I was going to be that person who was always going to be lucky. I wasn't going to get that sick ever again... I was never going to have to deal with a scary surgery...and I could continue to eat and do whatever I liked. And then 2008 happened and reality hit me upside the head.
To be continued...

1 comment :

  1. Oh my gosh, Katie. I had no idea you were so sick. Thank you for sharing this.