May 25, 2010
It is going to be a much better day today. I am grateful to have such good friends on DS. When things go wrong, you guys are here for me. I really appreciate it.
I asked my parents to inform their primary dr and let him know about my PKD. Of course, they didn't mention it, or convieniently forgot. Not sure if I have a mutant gene or not. Neither my brother or sister have been diagnosed- at least not yet. I told them they need to keep an eye out for their blood work and blood pressure. Its not fair that I have to deal with PKD all alone in the family. Why did god give me this gene?
I also have this skin disease that I have been plegued since I as 7 years old. They are little red bumps on my face. Dr's were afraid to treat me until I was 16 years old. My grandmother's dermatologist was willing to take my case on. He was an older dermatologist (I really think he's gone!). Told me and my mother (I don't remember) that this skin disease would grow internally and that would be the cause of PKD. I really didn't believe it and my dr's said no. The summer of 1982, My mother and grandmother took me to the dermatologist for weekly or biweekly appts to have them lanced off (burned off). I had a larger red bump on the tip of my nose and always got teased/bullied by kids in the middle school and elementary school years. they always referred me as "pimple nose" "witch face" Whatever their phrase of the month was. They always made me cry and it would always get to me so I was a loner growing up. I had a few friends but they were school friends and had their own childhood issues (they were the quiet ones too). I was terribly shy and withdrawn because of it. I remember in 8th grade, things got so bad that everyone shun away from me - even my friends that I made in 7th grade. All of the sudden I wasn't good enough to be their friend anymore and called me "stupid" "I didn't know anything". I was kinda outcasted by everyone. It was the darkest and loneliest year of my school age years. I even had a contest with this guy in 8th grade math with tests and beat him every time. by the 1st week of September of my 9th grade year, I had my final treatment. It looked like I had a fresh face. Still people were kinda shy around me, didn't know how to react to the new me. These lesions are now back but they came back flatter. I have a few raised ones and need to find a reputable dermatologist who can take on my case (preferably someone who is around my age so I can continue to see him for life). My other issue with seeing a dermatologist is that it may take months to see this person. I had a few white lesions on my fingers but he burned those off. I have some on my toes and because of that, I do not walk around with open toed shoes or flip flops. I had a few of them burned off on my toes but they came back. I seem to think its because I keep my feet covered and they don't get air, where as my hands get air and were able to heal itself. I cannot exactly wear open toed shoes to work (although a few people in this office gets away with it - if my old manager was still here, she would be called on it). Maybe if I was working out of the house it would be easier to get this procedure done and it would be just like my hands. this is something else that I contracted with a mutant gene. Kind of a lifelong frustration because my brother and sister do not have this. Its like God has picked me to have these diseases and mutant genes. I don't have kids, why? because I do not want to bring anyone in this world because I have this skin disease. They would have about a 75% chance they would get it too. My old dermatologist said that what I have has a heredity trait of 100%. It was a decision that I made not to have kids after he told me this (well, I waited until 38). Odds are not in my favor. this leaves my parents without grandparents because my brother and sister do not have kids themselves. So, the generation line in my family ends with us, its a shame too. Makes me think that they were looking at me to have the kids. I am 44 years old and I am too old to have kids, plus I have health problems preventing me to have any. I don't want to be 65 and have a 18 year old.
I asked my parents to inform their primary dr and let him know about my PKD. Of course, they didn't mention it, or convieniently forgot. Not sure if I have a mutant gene or not. Neither my brother or sister have been diagnosed- at least not yet. I told them they need to keep an eye out for their blood work and blood pressure. Its not fair that I have to deal with PKD all alone in the family. Why did god give me this gene?
I also have this skin disease that I have been plegued since I as 7 years old. They are little red bumps on my face. Dr's were afraid to treat me until I was 16 years old. My grandmother's dermatologist was willing to take my case on. He was an older dermatologist (I really think he's gone!). Told me and my mother (I don't remember) that this skin disease would grow internally and that would be the cause of PKD. I really didn't believe it and my dr's said no. The summer of 1982, My mother and grandmother took me to the dermatologist for weekly or biweekly appts to have them lanced off (burned off). I had a larger red bump on the tip of my nose and always got teased/bullied by kids in the middle school and elementary school years. they always referred me as "pimple nose" "witch face" Whatever their phrase of the month was. They always made me cry and it would always get to me so I was a loner growing up. I had a few friends but they were school friends and had their own childhood issues (they were the quiet ones too). I was terribly shy and withdrawn because of it. I remember in 8th grade, things got so bad that everyone shun away from me - even my friends that I made in 7th grade. All of the sudden I wasn't good enough to be their friend anymore and called me "stupid" "I didn't know anything". I was kinda outcasted by everyone. It was the darkest and loneliest year of my school age years. I even had a contest with this guy in 8th grade math with tests and beat him every time. by the 1st week of September of my 9th grade year, I had my final treatment. It looked like I had a fresh face. Still people were kinda shy around me, didn't know how to react to the new me. These lesions are now back but they came back flatter. I have a few raised ones and need to find a reputable dermatologist who can take on my case (preferably someone who is around my age so I can continue to see him for life). My other issue with seeing a dermatologist is that it may take months to see this person. I had a few white lesions on my fingers but he burned those off. I have some on my toes and because of that, I do not walk around with open toed shoes or flip flops. I had a few of them burned off on my toes but they came back. I seem to think its because I keep my feet covered and they don't get air, where as my hands get air and were able to heal itself. I cannot exactly wear open toed shoes to work (although a few people in this office gets away with it - if my old manager was still here, she would be called on it). Maybe if I was working out of the house it would be easier to get this procedure done and it would be just like my hands. this is something else that I contracted with a mutant gene. Kind of a lifelong frustration because my brother and sister do not have this. Its like God has picked me to have these diseases and mutant genes. I don't have kids, why? because I do not want to bring anyone in this world because I have this skin disease. They would have about a 75% chance they would get it too. My old dermatologist said that what I have has a heredity trait of 100%. It was a decision that I made not to have kids after he told me this (well, I waited until 38). Odds are not in my favor. this leaves my parents without grandparents because my brother and sister do not have kids themselves. So, the generation line in my family ends with us, its a shame too. Makes me think that they were looking at me to have the kids. I am 44 years old and I am too old to have kids, plus I have health problems preventing me to have any. I don't want to be 65 and have a 18 year old.
Replies
I\"m so sorry you have gone through this all of your life. That had to have been very hard dealing with the other kids. I hope you are able to do what you did before and find a good dermatologist. Feel better, ok. Hugs
It has had to be so difficult going through the embarrassing features of this disease and the cruelty of the world to you. I have wondered why God chose me to have bipolar disorder and I have no answers. The one thing my suffering gave me was the ability to relate to and encourage others who are going through similar things. Perhaps you could volunteer to talk with people who are just finding out about their condition. You could empathize well with them and you could share the strategies that you have used to cope. Just an idea. I am here if you need to vent!
Hey there my friend... I am sorry that you have had to endure this and go through what you have. I will say it has certainly made you a stronger woman and a very heartfelt one! I am a firm beleiver in we are handed only what God beleived we can manage. There are those out there that would turn what you have had to deal with into something far worse and make it all about them... which you haven\'t.
Dealing with skin cancer has taught me thought. It is funny, in the last few years, I have met a couple of people who look at me like I have the plague when I tell them I have skin cancer. People are stupid and kids are mean.. that hasn\'t changed. I am going through that with my own two right now. I work hard to make sure they are not those kids that picked on you... I am lucky in that my kids are friends with everyone and if they are around the mean kids, they have learned to walk away.
I hope you have a great day today!!!
thanks everyone for your heartfelt comments.