It was July 13, 1987, when I received the diagnosis that would change my life forever.
I had survived a difficult junior year in high school, and had recovered (essentially) from a brief struggle with anorexia. Believe me when I say, I think my dad may have saved my life when he stopped me from becoming a model...had he done nothing, I might have become perpetually anorexic, and probably would have died from that at an early age.
In June, 1987, Mom and I accompanied Dad on a business trip to Cocoa Beach, FL. Yes, there really is such a place, and I loved being there those two weeks.
During our "vacation," I continued to maintain my diet and exercise routine, which I had modified a little, after I had to recover from being too thin. Fine. I was doing very well with that. Never got under 100 lbs., as I had the year before. Always, about 104-105 lbs., which to this day, I would love to be able to weigh!
When we returned home, again, I was up to my usual diet and exercise routine. I had let up a little on the exercising, but was still spending most of my waking hours with that.
July 12, 1987: I got off the couch to turn the TV off, after enjoying an episode of "The Monkees." When I got up, my low back started hurting terribly. I thought I had merely pulled a muscle during exercising earlier that day. But, overnight, I had to make frequent trips to the bathroom...maybe once or twice an hour. I took Tylenol for the pain, but for the first time in my life, Tylenol just did not cut it.
That was why I figured that something must be terribly wrong.
That day--July 13, 1987--I saw my pediatrician, who ordered a CT scan of my kidneys.
That was how we found out. It was official as of that day. I have Polycystic Kidney Disease.
Questions remain in my mind to this day. Did I screw my own body up with all that dieting and exercising????? The very things that are supposed to be good for you...fitness, and all that...did it screw my body up??? What happened??? How did I get this disease, which is normally hereditary, but no one in my family has it???
To this day, I wonder.
As I am sure you know already, but I'll tell you anyway, the old PKD kidneys had to come out in November of 2007...20 years after the initial diagnosis. I had no idea that my kidneys would fail so early on in my life...then again, I knew nothing about dietary restrictions as a way to slow down the progression of kidney failure. Had I known 10 years ago what I know now, I might not be on dialysis yet.
It does no good to kick myself in the tail for all of this. What's done is done. All I can do is pray that I do indeed get a kidney transplant this August (the 18th, if all goes well...just one more month). I can't change the past, other than to pray for forgiveness, on the outside chance that I did screw my own body up.
Thank you for reading!!
xoxo
Tuesday, July 13, 2010
Monday, July 5, 2010
No More "PD" Catheter
I meant to post this last week, shortly after telling you about my new hemo. catheter (which has already had to be replaced once).
The "PD" catheter had to come out because of the nature of the infection I was trying to recover from. Because some infections cling to the inside part of the catheter, the patient would be doomed to never get rid of the infection, without getting rid of the catheter.
Here is where my "PD" catheter used to be. Because it had been in the only part of me that wasn't full of scar tissue, there's a very slim chance that "PD" will be in my future again at all.
I will be back, shortly, with some good news.
The "PD" catheter had to come out because of the nature of the infection I was trying to recover from. Because some infections cling to the inside part of the catheter, the patient would be doomed to never get rid of the infection, without getting rid of the catheter.
Here is where my "PD" catheter used to be. Because it had been in the only part of me that wasn't full of scar tissue, there's a very slim chance that "PD" will be in my future again at all.
I will be back, shortly, with some good news.
Children Grow Up So Fast!
Now, when I say that, I have my little fur-child on my mind...my new kitten...little Tabby. She's grown so much...and I've only had her for about two weeks now. Already, she's into her discovery phase...always discovering new things...but she's still very cute, and sweet!! She likes to jump a lot too.
Here's a recent picture of Tabby and me. She may be a little camera-shy now, but soon, she'll be a regular ham, I'm sure. :-)
Here's a recent picture of Tabby and me. She may be a little camera-shy now, but soon, she'll be a regular ham, I'm sure. :-)
Sunday, July 4, 2010
Aug. 18th....
The latest is, that as far as I know, my transplant is scheduled for Aug. 18th. I'll be keeping in touch with everyone, including my donor, to be sure I don't miss a beat. But that's our date, as far as I know.
Coming up shortly.
I am either going to have to get strong enough to clean this pig-sty of a house, or I'm going to have to hire a maid. Whichever...I know that things cannot stay the way they are, because if they do, my body will reject my new kidney while trying to keep from getting sick from all the dust and crap in the house.
I'm fixing to move, even, if that's the only way I can have a clean, and healthy, environment to recover from my transplant in. That is why, though. Because there's no other way.
I'll keep you posted, but I may have to be away from here for awhile....
Thanks for stopping by!
Coming up shortly.
I am either going to have to get strong enough to clean this pig-sty of a house, or I'm going to have to hire a maid. Whichever...I know that things cannot stay the way they are, because if they do, my body will reject my new kidney while trying to keep from getting sick from all the dust and crap in the house.
I'm fixing to move, even, if that's the only way I can have a clean, and healthy, environment to recover from my transplant in. That is why, though. Because there's no other way.
I'll keep you posted, but I may have to be away from here for awhile....
Thanks for stopping by!
Thursday, June 24, 2010
Told you I wasn't feeling too well over the last couple months....
This is my new hemodialysis catheter, put in this evening.
Hemodialysis is the PITS, but for now, I really don't have a choice...
Tomorrow, out comes the "PD" catheter...again. The question is, after 6 to 8 weeks, when I start begging to switch back to "PD," will I be able to???? We shall see. Time will tell.
....
Tuesday, June 22, 2010
What gives???
What's with the "no comments" thing???
Is anyone reading this blog??? Because if not, I'm gonna close it down.
Last chance to tell me you care...I'm not gonna keep my blog open for people who don't care.
Thank you for reading???????????????????
Is anyone reading this blog??? Because if not, I'm gonna close it down.
Last chance to tell me you care...I'm not gonna keep my blog open for people who don't care.
Thank you for reading???????????????????
Thursday, June 3, 2010
Movin' On...
I didn't exactly get over the Jerry incident in a heartbeat, but I moved on to second grade in a heartbeat...but first, I made it through the summer without major torture. Home was, officially, a haven for me. I confirmed it was, during that summer, for when I was home, I was as calm as could be and came to trust my parents more so than any other grown-up, and definitely more so than the other kids. And thank goodness I didn't have to see much of the kids at all during the summer months. June, July, and August were more of a blessing to me than they are to the average schoolteacher!! But, after reading the post that covered my first grade year (the long post), you can now understand why...
The summer before second grade, I turned seven. For my birthday, Mom got me...a kitten!! One of the sweetest of kittens that I had, until my four tabbies, whom I love and cherish now. Manny... Actually, when I first saw him, I exclaimed: "MANNERS!" And so it was. The new kitten, a black and white shorthair, was now called "Manners." After a few months, by a slip of the tongue, I called him "Manny," and that became his name more often than the full version "Manners." That cat became my bestest friend and playmate from the moment we first met...and that didn't change until I left for college in 1988. Coming home to visit, during my freshman and early sophomore year of college, was an extra-special treat, as long as I got to spend time with Manny. He passed away during my sophomore year, leaving me to heed the temptation to just take a break from college. That was how special he was to me. We grew up together...and losing him, in February of 1990, was a very difficult thing for me to live through.
My best human friends during second grade, were Karen, whom you'll remember tried to stop Jerry from picking on me, to no avail...and Michelle, who was soooooo much like me, except shorter in height. Shy like me, she was back then...and wore glasses, much like the pair I was soon to get. Michelle and I had a lot of fun together back then. Once, she taught me how to pick flowers over on the side of the school's parking lot, but my heart wasn't in that. She somehow opened up only to me, and I to her. We clicked...like pieces of a puzzle that just naturally fit together. To be honest, I haven't really felt that magic bond with anyone else since. She even helped me feed Manny once in awhile, and this, I remember, brought joy into both of our lives in those days.
I seem to recall Karen and I spending a lot of Saturdays together, watching "Super Host," a Saturday afternoon program in Cleveland back then. She eventually even taught me how to roll up a cigarette. Hmmmmmm...so her mother WAS doing drugs...apparently in front of Karen. So much for the innocence of childhood. I never actually did any cigarette rolling myself, but thanks to Karen, I might have known how to.
Second grade started out pretty normal. My teacher, Ms. Jones, was the sweetest I can remember...an older woman, possibly ready to retire not too long after she got done with my class. And my class was the sweetest she'd had in years! The older kids, for about the last six years, had put the teachers at Rowland through hell...throwing ice balls at the cars going by, and generally being absolute hooligans...could that have been why the staff collectively threw their hands up and decided they'd had enough, by the time my class came along??? Could be... I may never know...
Second grade also meant I could be, and was for a brief time, a Pixie. My mom volunteered some of her time to help with the Pixies, and later the Brownies. I didn’t much care for it, for I found myself getting really jealous of the other girls, and feeling as though my mom loved them more so than she did me. This was a feeling I wound up having even in my own family...I thought my mom loved my same-age cousin, Tammy, more so than she did me. Talk about inferiority complexes...I'd say mine started at a very early age...then again, look at all the suffering I endured the year before. I must have thought Mom hated me and sent me to school so Jerry could beat me up...and that might have been the beginning of me thinking she loved other kids more than she did me.
Add to that, the fact that my mom and I share a common strong dislike for hearing about certain subjects while we’re eating or thinking of eating...such as hair. Please do not EVER talk about that while I’m trying to stay healthy and well-hydrated!!! When I was 7, possibly in the summer or during second grade, my aunt—-Mom’s sister, and Tammy's mom—-fixed us chocolate chip cookies. I was the lucky one who had a wad of her dog’s fur in my cookie. To this day, hair is very much taboo…you do NOT discuss it with me and expect me to keep food or fluids down. Sorry, but on top of inheriting Mom’s dislike for that, I wound up having dog fur in my cookie at the tender age of 7. You will never get me to change those particular stripes! I'm not trying to be rude...that's just the way I am, and I'm tired of being expected to change after all of these years.
That was also the second year that Cleveland had a blizzard. '77/'78. I had already learned to really loathe Cleveland winters, and nothing was gonna change that...although, time has lessened that loathing and brought it down to just an understandable dislike.
During the holidays, '77/'78 again, my mom started writing a children's story called "The Tails Family." This was the year that I had helped to inspire that, by a real-life collection of toys that I compiled and called "The Tails Family," after Manny’s very handsome, long, black tail. The cat and I almost became famous...but, getting published was enough of a challenge for Mom that she decided it would be just between her and me, and whoever else might care to hear what she had written. She never did get that book published, although I still think it should have been a best-seller!
Some time during second grade I believe, my day was literally split into two halves, by lunch time. I'd be in Ms. Jones's class in the morning, then come home for lunch (that was cheaper than having me stay at school for lunch, plus I could eat in peace if I was home). After lunch, I'd go to this special class in the same school. I described that in my last post. This was most commonly known as the "LOC" class. That stood for "Learning Opportunities Center," and was mainly for kids with learning disabilities. Howard, the boy three years my senior, who got a brief kick out of chasing me home and scaring the hell out of me by saying "I'm gonna kill you!!!!", was in this special class too. The idea was that, he would learn not to be a bully before it was too late, and I would learn to come out of my shyness. Jerry never did have to attend that class...and to this day, I have no idea why. It wasn't as though the staff didn't know what he had been up to the year before... Oh well...
I think eventually, the "LOC" class—-which I always thought was the "Yellow C" class (was I dense or what...)—-helped Howard. At least, he went from growling and saying, "I'm gonna kill you!!!", to merely giving me an evil look...to finally, learning to get along with others...even me. I'm glad that he was so helped by that class.
My new friend Michelle also wound up in that class by the end of second grade, I believe. She was in for the same reason I was...to get over her shyness. By 7th grade, she had done very well at that, whereas they somehow just could not get through to me. Somehow, I don't think that was what I needed at all! I think that I got what I needed some eight years or so later, due to money being so tight in my family. But, that, I'll be writing about when I get to that stage of my life. First, I had to muddle my way through elementary school, and then Junior High, which wasn't all that much easier.
The summer before second grade, I turned seven. For my birthday, Mom got me...a kitten!! One of the sweetest of kittens that I had, until my four tabbies, whom I love and cherish now. Manny... Actually, when I first saw him, I exclaimed: "MANNERS!" And so it was. The new kitten, a black and white shorthair, was now called "Manners." After a few months, by a slip of the tongue, I called him "Manny," and that became his name more often than the full version "Manners." That cat became my bestest friend and playmate from the moment we first met...and that didn't change until I left for college in 1988. Coming home to visit, during my freshman and early sophomore year of college, was an extra-special treat, as long as I got to spend time with Manny. He passed away during my sophomore year, leaving me to heed the temptation to just take a break from college. That was how special he was to me. We grew up together...and losing him, in February of 1990, was a very difficult thing for me to live through.
My best human friends during second grade, were Karen, whom you'll remember tried to stop Jerry from picking on me, to no avail...and Michelle, who was soooooo much like me, except shorter in height. Shy like me, she was back then...and wore glasses, much like the pair I was soon to get. Michelle and I had a lot of fun together back then. Once, she taught me how to pick flowers over on the side of the school's parking lot, but my heart wasn't in that. She somehow opened up only to me, and I to her. We clicked...like pieces of a puzzle that just naturally fit together. To be honest, I haven't really felt that magic bond with anyone else since. She even helped me feed Manny once in awhile, and this, I remember, brought joy into both of our lives in those days.
I seem to recall Karen and I spending a lot of Saturdays together, watching "Super Host," a Saturday afternoon program in Cleveland back then. She eventually even taught me how to roll up a cigarette. Hmmmmmm...so her mother WAS doing drugs...apparently in front of Karen. So much for the innocence of childhood. I never actually did any cigarette rolling myself, but thanks to Karen, I might have known how to.
Second grade started out pretty normal. My teacher, Ms. Jones, was the sweetest I can remember...an older woman, possibly ready to retire not too long after she got done with my class. And my class was the sweetest she'd had in years! The older kids, for about the last six years, had put the teachers at Rowland through hell...throwing ice balls at the cars going by, and generally being absolute hooligans...could that have been why the staff collectively threw their hands up and decided they'd had enough, by the time my class came along??? Could be... I may never know...
Second grade also meant I could be, and was for a brief time, a Pixie. My mom volunteered some of her time to help with the Pixies, and later the Brownies. I didn’t much care for it, for I found myself getting really jealous of the other girls, and feeling as though my mom loved them more so than she did me. This was a feeling I wound up having even in my own family...I thought my mom loved my same-age cousin, Tammy, more so than she did me. Talk about inferiority complexes...I'd say mine started at a very early age...then again, look at all the suffering I endured the year before. I must have thought Mom hated me and sent me to school so Jerry could beat me up...and that might have been the beginning of me thinking she loved other kids more than she did me.
Add to that, the fact that my mom and I share a common strong dislike for hearing about certain subjects while we’re eating or thinking of eating...such as hair. Please do not EVER talk about that while I’m trying to stay healthy and well-hydrated!!! When I was 7, possibly in the summer or during second grade, my aunt—-Mom’s sister, and Tammy's mom—-fixed us chocolate chip cookies. I was the lucky one who had a wad of her dog’s fur in my cookie. To this day, hair is very much taboo…you do NOT discuss it with me and expect me to keep food or fluids down. Sorry, but on top of inheriting Mom’s dislike for that, I wound up having dog fur in my cookie at the tender age of 7. You will never get me to change those particular stripes! I'm not trying to be rude...that's just the way I am, and I'm tired of being expected to change after all of these years.
That was also the second year that Cleveland had a blizzard. '77/'78. I had already learned to really loathe Cleveland winters, and nothing was gonna change that...although, time has lessened that loathing and brought it down to just an understandable dislike.
During the holidays, '77/'78 again, my mom started writing a children's story called "The Tails Family." This was the year that I had helped to inspire that, by a real-life collection of toys that I compiled and called "The Tails Family," after Manny’s very handsome, long, black tail. The cat and I almost became famous...but, getting published was enough of a challenge for Mom that she decided it would be just between her and me, and whoever else might care to hear what she had written. She never did get that book published, although I still think it should have been a best-seller!
Some time during second grade I believe, my day was literally split into two halves, by lunch time. I'd be in Ms. Jones's class in the morning, then come home for lunch (that was cheaper than having me stay at school for lunch, plus I could eat in peace if I was home). After lunch, I'd go to this special class in the same school. I described that in my last post. This was most commonly known as the "LOC" class. That stood for "Learning Opportunities Center," and was mainly for kids with learning disabilities. Howard, the boy three years my senior, who got a brief kick out of chasing me home and scaring the hell out of me by saying "I'm gonna kill you!!!!", was in this special class too. The idea was that, he would learn not to be a bully before it was too late, and I would learn to come out of my shyness. Jerry never did have to attend that class...and to this day, I have no idea why. It wasn't as though the staff didn't know what he had been up to the year before... Oh well...
I think eventually, the "LOC" class—-which I always thought was the "Yellow C" class (was I dense or what...)—-helped Howard. At least, he went from growling and saying, "I'm gonna kill you!!!", to merely giving me an evil look...to finally, learning to get along with others...even me. I'm glad that he was so helped by that class.
My new friend Michelle also wound up in that class by the end of second grade, I believe. She was in for the same reason I was...to get over her shyness. By 7th grade, she had done very well at that, whereas they somehow just could not get through to me. Somehow, I don't think that was what I needed at all! I think that I got what I needed some eight years or so later, due to money being so tight in my family. But, that, I'll be writing about when I get to that stage of my life. First, I had to muddle my way through elementary school, and then Junior High, which wasn't all that much easier.
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