Thursday, June 24, 2010

My Mica

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Adorable, isn't she?

Thirteen years ago I wanted to adopt a pet. My bunny had passed away about two years before, and I missed having a little one around. My boyfriend at the time suggested a cat but I wasn't sure about it. My family had pets while I was growing up, but never a cat. I remembered my Dad said that cats scratch up your furniture and that they aren't as affectionate as dogs, but I thought why not give a cat a try? I lived on the top floor of an apartment building and I didn't think it was big enough for a dog, so a cat it was! There was a family in Waterloo that had kittens that needed homes, so my boyfriend and I made an appointment and headed over there. I sat down on the carpet watching these little black kittens playing and my heart melted. They were so adorable and the noises they made were so sweet.

One waddled over and sat infront of me and just stared, and then she fell over, lol. She was mine! We put her in the basket that I brought and couldn't wait to get her home! She needed some supplies so we stopped at a pet store. I'm not one of those people that like to dress up their pets. I don't know why, but things like that have never appealed to me. I do however like collars, and Mica has quite a few, I have even made some of themcrocheted and braided some of them for her.

In the early days of our relationship I knew that it was made in heaven. Whenever I would lay down she would lay on my chest and it seemed like she was trying to put her little arms around my neck. She would nuzzle me with her tiny nose. She still does it but now she can get her arms all the way around my neck. She followed me everywhere, taking the garbage down the hall, from room to room and even into the bathroom. Once in there she would try to get up on my lap, but she was too small so I would pick her up and put her there. Having Crohn's I can spend a lot of time in the bathroom. As she got bigger she would just jump up on her own. She is so smart too, whenever I touch the toilet paper she jumps down,lol.

If I sleep too long in the morning she wakes me up for her breakfast, and at 6 o'clock p.m.she will come find me and chirp at me to feed her supper. She gets treats a couple times a day. Sometimes she will let me know if she wants some, or I will just grab them and shake the bag. For some reason she likes to eat them on the end of my bed, and as soon as she hears the bag that's where she goes. She has to sit for her treats and knows it. We have been working on shaking a paw for them for a while now, and she is doing really well.

Wednesday, June 16, 2010

First Hospitalization

Since the Endometriosis diagnosis only seemed to help my pelvic pain, not the back or abdominal pain that I was experiencing, I knew that it wasn't the "Monster", and I would have to keep on searching for answers.

I was getting pretty upset and angry that my doctor, friends and family thought I should be cured since the lapro surgery. My boyfriend at the time called me "a drag" when I didn't feel well enough to go out with friends.

One night I was feeling so well that we went with friends to a patio for a couple of drinks. I found out that beer really made my stomach worse, so I drank Rye most of the time. My doctor wouldn't give me medication for the pain, because he didn't think anything was wrong, so sometimes when the pain would get really bad I would drink just to dull it. That night it was really warm out and I was wearing a tank top. All of the sudden I felt really cold and then my teeth started to chatter. My boyfriend's parents were away for the weekend and I was planning on staying at his house. We were going to have some friends over for dinner the next night, and I wanted to feel well enough to do it, so I asked him if we could go home, because feeling chilled like I was I thought that I might be getting a cold.

When we got to his house, he made me a hot cup of tea and I got into bed. I fell asleep, and when I woke up it was 2:30 in the morning. I had to use the washroom so I got out of bed, but fell onto the carpet. I didn't have enough energy or strength to hold up my own body. His bedroom was in the basement, and he and his sister were listening to music quite loud upstairs. I tried to yell, but it came out like a whisper. I didn't know what was wrong and I didn't know what to do. I looked around and found one of his rugby cleats, and threw it up at the door. I landed only a few feet away from me. Then I grabbed a baseball and tried again. It hit the door and rolled back to me. I kept on doing this until I heard the volume of the music turn down, and threw it again. I heard his footsteps so I knew that he heard it, and when he saw me on the floor I told him I really needed to get to the bathroom.

He helped me get there, asking me what was going on. I told him that I had no idea. He had to help me with my p.j. bottoms, and just as I was going to sit down I told him I was going to throw up. He plopped me down and grabbed the garbage can, just as I started going out of both ends at the same time. When I was done I said that I really needed to go to the hospital. I was terrified, I thought I was going to die. He got me dressed, and off we went.

The Emergency Room was pretty empty at that time of the morning, and they brought me in right away. They took blood, and when the results came back the Dr. came in with two petri dishes. He showed me one with zig-zag lines of white stuff on a reddish-looking gel typed base, and told me that it was a positive result for an infection. Then he showed me the other one that had the white stuff covering the whole dish, top and all. He said that was from my blood and that I was going sceptic. He admitted me and put me on a whole slew of antibiotics to get rid of it. Since I was already in the hospital I asked if they could run some more tests to find out what my "Monster" was. I had 3 barium tests that all came back negative. Not only did everyone already think I was nuts, but all of these negative tests weren't helping my cause. Within a week I was released and sent on my way to continue living in pain.

Sunday, June 13, 2010

What An Inspiration!

I have a friend that really inspires me, and I have never met her face to face.
That is one of the things that I really enjoy about Twitter, being able to meet people from all over the world that you would never have been able to meet in any other way.
I have a lot of Twitter friends that are incredible people, but she is different.

We all have our crosses to bear, those things in our lives that we feel we have to deal with and overcome. Whether it is a dysfunctional family upbringing, a traumatic event, a mental or physical illness etc. These issues can be very hard to get past.

My friend has Cancer, and she is my Champion.
She doesn't feel sorry for herself, or sit around feeling defeated, she has fought it the whole way with surgery and treatments. Even when her body is weakened from her treatments she still thinks of other people and their needs. If you were to read her tweets you wouldn't even know that she is sick. She is a truckers advocate, is passionate about the plight of the soldiers fighting for our freedoms, and has an amazing sense of humour.

I want to be more like her. I write this blog and am writing my book to try to help other people with Crohn's Disease, their friends and family members, and to spread awareness of the disease. But I could, and should be doing so much more. Some Cancers, especially if not caught in time or the ones that are treatment resistant, can be terminal. My disease isn't, there is not any real chance that I could die. So like her I should live everyday to it's fullest! I need to be doing more to make the world a better place to live like she does, find more things to be passionate about like she is, and do more with my life, and take better care of myself.

She has experienced the love of a good pet, a great man, and the love of The Lord. So many people love her, she is an amazing person that has touched so many peoples lives. She is strong and brave and has taken her Cancer by the horns.

I pray everyday that she wins her battle because this world is a better place with her in it. But if God calls her home, she will have left a huge fingerprint. On the world, on her friends and on my heart.

Tuesday, June 8, 2010

Am I cured?

With everyone around me thinking that I was making up my symptoms, or starving myself to death, I started to wonder if I was crazy too. I mean wouldn't you? Every test that I had came back negative, I was eating healthy foods and exercising to try to take care of myself. I wasn't complaining about it all any more, because what was the point, no one believed me anyway. But I must have just been imagining the pain that made me double over or feel like I was going to pass out, and the hours that I would sit and spend in the bathroom with unrelenting diarrhea, having anything that I ate go right through me in seconds.

I was so frustrated! I would pray to be healed and barter with God how I would never do anything wrong ever again if he would just take my pain away, but that night it would make it very hard to fall asleep, and the next morning it would wake me up even before my alarm would go off. Looking back now I am really kind of surprised that I never blamed God for any of it. I was never angry with Him, I never gave up my faith because he wouldn't answer my prayers. I found my faith actually getting stronger the sicker that I was getting. I knew in my heart that there was something terribly wrong, and if I was going to die from whatever mystery illness that I had, I knew that it was all apart of His plan for me.

Many of the women on my Mom's side of the family had endometriosis, with some of them having to have hysterectomies, that came up at one of my doctors appointments. Endometriosis is when the cells from the endometrial lining of the uterus start to grow on the outside of it. I like to use the analogy of a jelly-filled doughnut. The jelly gets out of the middle of the doughnut and spreads all over the other doughnuts in the box, like the crullers or bear-claws. These cells start growing (they don't know why) on the uterus, fallopian tubes, bladder or ovaries. Since there was a pretty good chance that I could have inherited it, my doctor referred me to a Gynecologist.

I had no idea how that could have had anything to do with pain from eating, but I was just happy that it could be the problem and that I could finally be on my way to being diagnosed with something other than being out for attention, and could be treated for it. Everyone had made me feel so bad about myself for so long, that I wanted to find out what was wrong just to prove to them that there was something wrong! Not because I wanted something to be wrong, but to prove that I was right, that I knew my body better than anyone else did, and that listening to my instincts was the right thing to do.

The only real way to diagnose endometriosis is to actually see it, so I had to go to the hospital for a laparoscope. It was quite a simple surgery, day surgery, just in and out, but I was so afraid (and still am!) of needles. I didn't care about the cutting me open part, I started having such a panic attack that I wanted to go running and screaming from the building just thinking about the i.v.. I tried to escape a couple of times right over the head of the gurney but I wasn't fast enough, and I didn't want to let go of my Mom's hand when they wanted to wheel me through the big surgery doors but I had no choice.

Being inside that hallway freaked me out because they just pushed me up against the wall, and left me there to get more and more panicked. As I lay there calculating the opportunity for escape, a clean getaway, an occupied gurney was wheeled out of the operating room. There was a woman sleeping soundlessly on it with a tube coming out of her nose. That's when I almost lost it. I started to cry out of sheer fear, and that was when a nurse came over to go over my chart with me. She showed me her funny watch to try to get me to smile, and it worked. She actually asked me what grade I was in, and happening to have been eighteen and graduated from high school at the time, that made me smile more.

That nurse stayed with me as I transferred myself onto the operating table and let me squeeze her hand as the i.v. was being put in. She really made the whole experience much easier than I thought it was going to be. I felt a sharp pain in my arm, my doctor said "Lights out now Trace", and the next thing I knew I was in Recovery. The surgeon came in to talk to me and said that I did have Endometriosis, it was on my tubes, ovaries, bladder and the outside of my uterus. He said that he cauterized it all (burned it off) and that I should find a big difference in the pain that I was having from now on. He said that he was happy that I now knew what was causing all of my discomfort. I was happy too, but I had a feeling that it was not over.

About three or four days later the surgical pain was gone, but not my "Monster". That was the name I had given Crohn's before I knew what it was. I told my family doctor, my friends and family that not much had changed, that the pelvic pain was gone but not the back or abdominal pains and all of my other symptoms were still there. None of them were very impressed with me, they all decided that I wanted to be sick, and their feelings about me complaining for attention intensified.

So was I cured? Not even close.

Monday, June 7, 2010

It's Complicated

I didn't end up having my colonoscopy on friday. I drank half of my prep like I was supposed to, and had every intention of getting up early the next morning to drink the other half. But sometimes things have a tendancy of not working out the way we want them to.

I could feel the familiar rumbling in my belly, but I also felt a nagging nausea and that made me nervous. After downing that horrible stuff, eight ounces every ten minutes for two hours, the last thing that I wanted was to feel like it was going to come back up.

I'm sure that I'm not the only Crohn's patient that has certain traditions that they keep for the day and night before a colonoscopy. I always set up the bathroom with things to keep me occupied like books, games and my Journal. I was writing an entry when I started to feel horrible abdominal pain and a migraine coming on. It kept getting worse, and worse so at first when I threw up I was happy because the pressure in my head subsided. But then I realized what was going on and I was not a happy camper at all.

I have had over ten surgeries so I have a lot of scar tissue, adhesions as they are called. Every time that I get cut open my scar keloids, this is when it becomes wider and thicker than normal. Inside my abdomen the scar tissue attaches itself all over the bowel, other organs and to the peritoneum, the lining of the abdominal cavity. These adhesions have caused bowel obstructions before and I knew that was what was happening again. The scar tissue is sticky so it makes the bowel stick to itself, or it wraps around the bowel cutting off the passageway, and potentially the circulation. This is one of the complications of having surgery. I have had to have emergency surgery for this before because the circulation was cut off. If the blood can't flow through the bowel, it will die and eventually cause gangrine, which causes blood poisoning that could lead to death.

I knew that it was only a partial obstruction due to the fact that things were moving out of both ends. If I was only vomiting I would have been way more concerned. If this ever happens to you, DO NOT think that it will just get better on it's own or that you can take care of it on your own, go straight to the hospital. Most likely you will need a naso-gastral tube inserted into your nose to suck out the fluid which eases the pressure off of the obstructed area. It is highly uncomfortable but helps to eleviate some of the pain. Most of the time with bowel rest, no food or water, the obstruction will loosen on it's own, only when it doesn't will they operate and go in to cauterize, or burn off the adhesions. This is one reason that surgery is always the last option, because every time they operate, adhesions can form, so having the adhesions cauterized can just cause more adhesions. It's a very vicious cycle.

I have been through this many times and know what to do to help the obstruction resolve itself, so I didn't need to stay in the hospital, also it was a partial obstruction so I didn't need a tube. If it had progressed, I would have been right back up to the hospital begging them to admit me.

It is now Tuesday and I am feeling much better, also my colonoscopy has been re-sheduled to take place in August. If you have any questions about complications of any kind I will be happy to answer them. And I hope you never have any yourself.

Wednesday, June 2, 2010

"The Dreaded Prep for the Scope"

As Crohn's patients, we go through a lot. Good, bad and indifferent.

Spending days, weeks and even months at a time in the hospital teaches us patience, that's a good thing. Being thankful for good days, and making the most of them, empathizing with others that suffer, and learning to listen to our own bodies are also all very good.

But the Colonoscopy, that falls under the bad category.

It's not the test itself, that's a breeze. The humiliation of having a tube inserted into your butt in front of a doctor and nurses, is greatly reduced by the medications that are given by i.v., weakening our defences and cares. Most of the time, thankfully, we don't remember much of it at all. The pain experienced during the test, thanks again to the medications, becomes part of a very distant memory.

The inhabition that the medication can create has been comical to some present in the past for me. When I was diagnosed, I was very blessed to have an extremely good looking Gastro. that I had a secret crush on. My Mom and friends knew about how I felt, but I certainly didn't want him to find out.

Under the influence of these medications during a Colonoscopy, I guess I changed my mind and told him that I was in love with him! When I woke up in Recovery the nurses told me about it and I was mortified! Then he came into the room and neither of us would look eachother in the eye. It was so embarassing! He was my doctor for close to 20 years, and I said stuff like that everytime. He was such a good sport about it and never mentioned any of it to me, but the nurses rubbed it in any chance they got! LOL!

Now for the worst part, the prep. Drinking litres of a salty based, slightly thick, clear liquid, that DOES NOT taste better cold, like they tell us it does, within a small, set period of time (... oh, it is just the worst tasting stuff created by man!) is such a horrible experience for me, that I actually have small panic attacks in the days leading up to having to drink it.

In the past when I have been in the hospital having tube feedings, they would put the prep down the tube, by-passing my mouth. That was great! I wish they could do that everytime. The stuff has such a negative effect on my gag reflex, that sometimes vomiting is inevitable, and then unfortunately I have to start all over again.

How are you with "The Dreaded Prep for the Scope"? If you have any tricks or advice on how to make this a more palatable experience, leave a message, you could help me or someone else that is reading this post. Have you had an embarassing moment too? I'd love to hear about it!