It seems I have insomnia more often than not these days. Its okay, I don't have to go to work in the morning, I am on long term disability. I have recently opted to cut the crap! lol, a little poo joke, one of many that we may have heard over the years of dealing with our crap? oh, there it is again. I used to be so uptight - about my crap. I remember the first time I had to do a blood occult test..I literally shut down my home and phone to family and friends for a week. I could not wrap my head around touching my shit. Now, almost 15 years later, I have endured more shit than I care to share and I touch my shit daily.
I have ulcerative colitis, celiac, and Lupus. After test drugs and market drugs, natural medicines and ignorance, I had no other options but to remove my large intestine. I have been told by many people that surgery or better yet call it what it is, getting a bag, will change your life for the better. Well it has changed my life, I am not sure if it is for the better. I know that sounds desperately victim like, but it is kinda' where I'm at. I am all for people, especially chronically sick people, owning it and then moving on. However for the first time in a long time, I am taking more time to move on and I think it's ok...for now.
I am happily married to my high school sweetheart. We met drag racing (aged 16) down the city streets of Edmonton, Alberta, Canada. Years later, he proposed, at my lowest point, well second lowest. I was flaring, on prednisone, had shingles, and I wanted to die. He, wanted to marry me.
So skip forward to the night of surgery, we hugged, kissed, embraced and acknowledged that surgery can go wrong. Little did we know that he would soon experience loss like few others can imagine.
This event will not quite replay in my head as an event would if it happened to one's self. However the event was only told to me after the fact, it happened to me yet I can't recall it. It was my life, which was temporarily lost.
The surgery was to remove my large intestine and leave my rectum just in case I could sustain further surgeries to build a jpouch. Due to the Lupus the doctors/surgeons are not sure if they can or should create jpouch. So laparoscopically my colon was to be removed, however they nicked my aorta and I had to be opened to fix the mistake. So much for my flat cute stomach! vanity yes. but it is a fact...my stomach has always been my favorite body part!
So they pull everything out, put it on the table next to me, fix the aorta, sew me up and ship me out. The surgeon calls my husband, while explaining to him these events, the staff start screaming for the surgeon. He hangs up and leaves my poor husband hanging on a wire of hope that I am not dead. He rushes to the hospital, and waits to hear from the team. He finds out, hours later, that I have lost five litres of blood and needed to be resuscitated. He sits with me in ICU until I wake up some twelve hours later. He held his hand up to block my eyes from the blaring lights and talked to me. All the while, I am kept in a sedated coma until I stabilize.
What the What!! My husband went through hell. I healed fast they say. They called me superwoman in ICU. I didn't know. I still don't. And WE are still healing.
It bothers him to see me nap, that really sends it home. To think what my love of my life went through. To think of the fear he relives when he sees me rest. The jolt. I know it, I have experienced similar fear, but it is the hysteric kind. The kind where you worry about an incident happening to someone. But he experienced loss, fear, love to the core. I know I am being repetitive or even dramatic, but this is just it, I repeat or replay to see if I can feel something more than just hearing someone's story.
So life goes on, I deal with the bag, the questions, the new pains, the lack of knowledge. Oh, the lack of knowledge. After years of practically being a GI and almost being placed on the payroll of the local hospital. I am back to kindergarten. How awkward. everyone has been there, but really, so many emotions, new technology, healing, pain, pain killers, new food, new methods. New.
It is truly rebirth. Right from the OR table to my new way of pooping. It truly is just all about poop with me.
And barring all that drama, I really am fun, happy, creative, strong and smart. But I have never been so challenged in all my life...to be..what? stronger, healthier? I surely hope so, I don't feel any of those things very often. Oh I know I will get there, chin up..but it is trudging up the mountain that sucks...the vista is wonderful...but it is sometimes short lived. I hope and trust that this was all for good reason.
My new life is starting. I hope that I was rebirthed with health, wealth, a job with creativity, and a supportive network of friends and family.
I have ulcerative colitis, celiac, and Lupus. After test drugs and market drugs, natural medicines and ignorance, I had no other options but to remove my large intestine. I have been told by many people that surgery or better yet call it what it is, getting a bag, will change your life for the better. Well it has changed my life, I am not sure if it is for the better. I know that sounds desperately victim like, but it is kinda' where I'm at. I am all for people, especially chronically sick people, owning it and then moving on. However for the first time in a long time, I am taking more time to move on and I think it's ok...for now.
I am happily married to my high school sweetheart. We met drag racing (aged 16) down the city streets of Edmonton, Alberta, Canada. Years later, he proposed, at my lowest point, well second lowest. I was flaring, on prednisone, had shingles, and I wanted to die. He, wanted to marry me.
So skip forward to the night of surgery, we hugged, kissed, embraced and acknowledged that surgery can go wrong. Little did we know that he would soon experience loss like few others can imagine.
This event will not quite replay in my head as an event would if it happened to one's self. However the event was only told to me after the fact, it happened to me yet I can't recall it. It was my life, which was temporarily lost.
The surgery was to remove my large intestine and leave my rectum just in case I could sustain further surgeries to build a jpouch. Due to the Lupus the doctors/surgeons are not sure if they can or should create jpouch. So laparoscopically my colon was to be removed, however they nicked my aorta and I had to be opened to fix the mistake. So much for my flat cute stomach! vanity yes. but it is a fact...my stomach has always been my favorite body part!
So they pull everything out, put it on the table next to me, fix the aorta, sew me up and ship me out. The surgeon calls my husband, while explaining to him these events, the staff start screaming for the surgeon. He hangs up and leaves my poor husband hanging on a wire of hope that I am not dead. He rushes to the hospital, and waits to hear from the team. He finds out, hours later, that I have lost five litres of blood and needed to be resuscitated. He sits with me in ICU until I wake up some twelve hours later. He held his hand up to block my eyes from the blaring lights and talked to me. All the while, I am kept in a sedated coma until I stabilize.
What the What!! My husband went through hell. I healed fast they say. They called me superwoman in ICU. I didn't know. I still don't. And WE are still healing.
It bothers him to see me nap, that really sends it home. To think what my love of my life went through. To think of the fear he relives when he sees me rest. The jolt. I know it, I have experienced similar fear, but it is the hysteric kind. The kind where you worry about an incident happening to someone. But he experienced loss, fear, love to the core. I know I am being repetitive or even dramatic, but this is just it, I repeat or replay to see if I can feel something more than just hearing someone's story.
So life goes on, I deal with the bag, the questions, the new pains, the lack of knowledge. Oh, the lack of knowledge. After years of practically being a GI and almost being placed on the payroll of the local hospital. I am back to kindergarten. How awkward. everyone has been there, but really, so many emotions, new technology, healing, pain, pain killers, new food, new methods. New.
It is truly rebirth. Right from the OR table to my new way of pooping. It truly is just all about poop with me.
And barring all that drama, I really am fun, happy, creative, strong and smart. But I have never been so challenged in all my life...to be..what? stronger, healthier? I surely hope so, I don't feel any of those things very often. Oh I know I will get there, chin up..but it is trudging up the mountain that sucks...the vista is wonderful...but it is sometimes short lived. I hope and trust that this was all for good reason.
My new life is starting. I hope that I was rebirthed with health, wealth, a job with creativity, and a supportive network of friends and family.
