My niece, Madee, who is exactly six months younger than my Ana Jain, has Eosinophilic Esophagitus, which basically means that her throat is inflamed, making eating next to impossible, making weight gain next to impossible. Poor girl. Two days ago she had a feeding tube placed to help her get bigger. I feel so bad for her! She is only 5!!
It brings back so many memories for me. I had a love/hate relationship with mine. I hated that I needed one at all. I hated/hate the whole situation. But it was doing the work that my body could not do. I would like to forget it but I also want to remember it. So..
I got my first G tube just a couple of days after my stroke. I figured it would only be for a few days. Again, denial. I barely noticed it at first because I wasn't really moving and I was sedated much of the time so the noise of the pump didn't bother me. After a few weeks, when I moved to Rehab, I began to notice it more. It was a tube that hung out a few inches from my belly and it could be connected to a longer tube from the pump. I would just tuck it in my waistband and then pull it out when I got hungry or thirsty. During therapy I got thirsty a lot so I would pull it out and someone would suck water from a bottle into a big syringe and then "push" that into my tube. I was a little confused because the feeling of thirst was so oral to me, so I would chew ice and then suction it out.
A few weeks into therapy, I was sitting on a bench, leaning over to get a pen, when suddenly I was really sick. I had to just lie back and wait for them to wheel me up to my room. That night was terrible! Every time they would put meds, water, whatever in my tube, it would cause serious abdominal pain. I didn't even want pain medication because it hurt too much going in.
The following morning when Dr. McLaughlin came in, my mom told him that she thought my tube had gotten knocked out of place. He said that it was really unusual ("People walk around with these things for years") but she was probably right. They did an x ray and sure enough!
They then took me in for yet another surgery and placed another one. But the pain was still there even after. They took another x ray and found that they had accidentally placed the tube in the wrong spot. So, they did another surgery and made a huge incision and really got a good look before placing it exactly right. Unfortunately, after all the trauma, my stomach had shut down and they were not sure that it would ever start working again.
But that was not the only problem. After all the meds and food had gone into my abdominal cavity instead of my stomach, I had developed a serious infection that, I later learned, was life threatening. So, I had yet another surgery to place a tube in my back to drain out the infection while being given heavy antibiotics through my IV.
After the infection was cleared up, they placed another tube that was actually two tubes, called a JG tube. It protruded a few inches from my belly and then came to a y. One side went to my stomach and the other went lower, to my small intestine.
That stayed in for a long time and I had very few problems with it. I just hated the sound of it working all night and the smell of vanilla from my food still makes me queasy.
Luckily, my stomach started working again but we found that I had much less reflux using the "J" port into my lower intestine and I didn't have to always sleep sitting up, as I did before.
The tube got knocked out of place months later when I was violently ill. But the surgery to put it back was short and sweet. Another time it got clogged with medication. Not all medication is liquid so most has to be ground up. Unfortunately some of the particles got stuck together and wouldn't move. So off to the ER I went. Guess what they used to unclog it? Coke! It worked wonders. The most exciting time was when I was transferring from my wheelchair to my bed and I knelt on the tube and yanked it out. Yummy. It was stitched in place but apparently I broke those and the whole thing came out into my hand. Another trip to the ER where they replaced it once again.
That time they put in a Mic-Key button. That didn't protrude but instead was flush with my belly and a tube locked into it from the bag (feed bag) hooked to the pump.
That one gave me no problems at all. That may have been because by that time I was starting to eat and used my tube only occasionally. I kept it in out of caution, for about a year after I started eating exclusively by mouth. It never bothered me, didn't show under clothes, etc. so it wasn't really an issue. But the day when I finally had it taken out was a tiny step forward on the long road to healing.
All this talk of feeding tubes reminds me that I have yet to start dinner and my kids won't like that!! Better go!
Thursday, June 20, 2013
Friday, June 7, 2013
Signs
As I said before, I am often asked what signs I exhibited both during and after being abused. I exhibited some of the classic signs but some were specific to only me. Every person is so different and reactions are different. Again, I can only speak for myself and my experiences.
When he first started, it only makes sense that I would just stop going over there. However, that would have been a huge red flag and people would have started asking questions, so I didn't dare. That would have been one sign no one could ignore but I wasn't thinking clearly so I didn't do it.
Before the abuse started, I had an amazing memory. I would memorize whole books and often correct people if I heard a flaw. This really annoyed most people but whatever. My grades were always stellar and studying was totally foreign to me. If I needed an answer to something, I could just picture it on the page and read it as if the book were right in front of me.
When the abuse started, I started trying to forget whole segments of my days. If I didn't the memories would stay with me always and I couldn't think, talk, sleep, eat, interact, etc. So It was necessary for me to put things in certain compartments and only access what I needed at the time. As a result, my memory took a hit. My brain didn't only forget some things so I started forgetting A LOT!!
At the same time my self worth was suffering. I felt that I was committing adultery so nothing I did really mattered. Unless I did some serious repenting, and that meant telling others what was happening, other accomplishments didn't mean a thing. I was young and the fact that I was being abused honestly never occurred to me. I just felt that if he were doing these things, even if I did nothing but sit silently and try to mentally take myself away, I don't know. But abuse never seemed to fit. Abuse was something that happened to smaller kids and I was 12/13. I was much too old.
As a combination of these things, my grades fell. I even failed math. That was a huge shock to my parents. I didn't really try most of the time and when I did, I found that the needed info was just gone. My grades didn't really recover until I quit school for a year at 19, moved to San Antonio, told my parents and others about the abuse, did the court stuff, and had lots of therapy. After that I got my very first 4.0 and my studies suddenly started coming more easily. You should see the difference before and after.
During the abuse I changed friends, preferring to hang out with people who I felt were less able or ready to judge me. My style of dress was different too. I didn't respect myself or my body and it showed. I remember leaving the house in one outfit, going into the school bathroom, changing into something different, and reversing the process after school.
Later, the boys I dated were...less than desirable. I dated a few good ones but I never felt that I could let them get too close or they would see how yucky I really was.
My behavior, especially at home, changed. My family felt that they were walking on eggshells around me. I would explode in a rage at even a perceived cross. I also started sleeping. A lot. Sleep was about the only real escape I had.
Luckily, when I got to high school, the abuse had stopped and to keep up appearances, I followed my brothers and ran/made class office. There I met some absolutely wonderful girls (I honestly believe they were heaven sent) who "rescued" me and steered me in a totally different direction than I had previously been heading. They are still my friends today and I credit them with saving me! THANKS!!
There were probably many signs that others could talk about, but my boys are nearly home from school and its play time ;)
When he first started, it only makes sense that I would just stop going over there. However, that would have been a huge red flag and people would have started asking questions, so I didn't dare. That would have been one sign no one could ignore but I wasn't thinking clearly so I didn't do it.
Before the abuse started, I had an amazing memory. I would memorize whole books and often correct people if I heard a flaw. This really annoyed most people but whatever. My grades were always stellar and studying was totally foreign to me. If I needed an answer to something, I could just picture it on the page and read it as if the book were right in front of me.
When the abuse started, I started trying to forget whole segments of my days. If I didn't the memories would stay with me always and I couldn't think, talk, sleep, eat, interact, etc. So It was necessary for me to put things in certain compartments and only access what I needed at the time. As a result, my memory took a hit. My brain didn't only forget some things so I started forgetting A LOT!!
At the same time my self worth was suffering. I felt that I was committing adultery so nothing I did really mattered. Unless I did some serious repenting, and that meant telling others what was happening, other accomplishments didn't mean a thing. I was young and the fact that I was being abused honestly never occurred to me. I just felt that if he were doing these things, even if I did nothing but sit silently and try to mentally take myself away, I don't know. But abuse never seemed to fit. Abuse was something that happened to smaller kids and I was 12/13. I was much too old.
As a combination of these things, my grades fell. I even failed math. That was a huge shock to my parents. I didn't really try most of the time and when I did, I found that the needed info was just gone. My grades didn't really recover until I quit school for a year at 19, moved to San Antonio, told my parents and others about the abuse, did the court stuff, and had lots of therapy. After that I got my very first 4.0 and my studies suddenly started coming more easily. You should see the difference before and after.
During the abuse I changed friends, preferring to hang out with people who I felt were less able or ready to judge me. My style of dress was different too. I didn't respect myself or my body and it showed. I remember leaving the house in one outfit, going into the school bathroom, changing into something different, and reversing the process after school.
Later, the boys I dated were...less than desirable. I dated a few good ones but I never felt that I could let them get too close or they would see how yucky I really was.
My behavior, especially at home, changed. My family felt that they were walking on eggshells around me. I would explode in a rage at even a perceived cross. I also started sleeping. A lot. Sleep was about the only real escape I had.
Luckily, when I got to high school, the abuse had stopped and to keep up appearances, I followed my brothers and ran/made class office. There I met some absolutely wonderful girls (I honestly believe they were heaven sent) who "rescued" me and steered me in a totally different direction than I had previously been heading. They are still my friends today and I credit them with saving me! THANKS!!
There were probably many signs that others could talk about, but my boys are nearly home from school and its play time ;)
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