I couldn't find the correct title for this post. What I would like to write about is the fear of transmitting the wrong genes. The wrong genes mean the genes responsible to development of my diseases. And it is not simple to write down. But I guess all mums with such a diseases have similar questions or worries. So, I decided to share mine own fears with you.
While I am watching my kids, especially next to the other kids, I am really proud mum. However, what I am worried is whenever she is a bit worse in stretching or certain move it switches on immediately red light in my head. I can certain similarity in my childhood, when I didn't know it is not a problem of gym, but first signs of future problems. At that time, I felt bad and I felt I need to work even more. I didn't understand why I cannot reach certain positions, and I am not that flexible. Only now I see what was wrong. My joints were swollen and tight. My skin started to be very tight and dry, I got terribly bloody hand during the winters, and strange rash on my face and chest in the early spring or during the holidays by the sea. I didn't connect all the signs, also such a constant pain. I was thinking that everybody has it, everybody suffers for the high heart rate over 100 up to 200 per minute in calm situation. I was thinking it is completely normal to feel stiff in the morning. Actually it feels like small win to know what was going on and it was not my fault as I was told many times.
For example I was told that I have destroyed my health by skating too much, that I took diets, or whatever. I have heard so many things. And nothing was correct. I think that skating actually helped me to be in shape for a long time. I was strong and I was doing it with love and passion, not because I had to.
But let's get back. Today, I was watching my little star on the ice and couldn't help to see me. Her problems are my problems. I was hardly holding my tears. What if I transmitted the incorrect genes to her. I do not want her to suffer, to go the way I am undergoing. I am only hoping that everything goes forward. But I am scared. There is no cure for this and I really do not see any real movement forward. I have in my mind a black humour joke: A cured patient is a lost customer. That is how I feel most of the time.
I am terribly scared. I feel like that I am the biggest looser. Not because of me, but because I have ruined someone's life. Ok, I didn't know about it until she was actually born. But, nobody can help me to feel bad for possible future pain of my daughter because if me.
Also it means how I am careful about my kids health. I am crazy about getting in contact with other people. As much I love contact, I hate to touch anyone or anything in public. Sorry for that. If anyone sneeze, I would be most happy to transport my kids home into rather sterilized environment. You know, for many of you, cold means just cold, no worries. But for me it could mean a huge trouble. I am getting out from any simple cold about 3 weeks, having all kind of complications from sinusitis into lupus flare, which is like going through death zone. My disease is spreading. Right now, I have inflammation of my left hip, which is first sign of Ankylosing spondylitis.
While I am watching my kids, especially next to the other kids, I am really proud mum. However, what I am worried is whenever she is a bit worse in stretching or certain move it switches on immediately red light in my head. I can certain similarity in my childhood, when I didn't know it is not a problem of gym, but first signs of future problems. At that time, I felt bad and I felt I need to work even more. I didn't understand why I cannot reach certain positions, and I am not that flexible. Only now I see what was wrong. My joints were swollen and tight. My skin started to be very tight and dry, I got terribly bloody hand during the winters, and strange rash on my face and chest in the early spring or during the holidays by the sea. I didn't connect all the signs, also such a constant pain. I was thinking that everybody has it, everybody suffers for the high heart rate over 100 up to 200 per minute in calm situation. I was thinking it is completely normal to feel stiff in the morning. Actually it feels like small win to know what was going on and it was not my fault as I was told many times.
For example I was told that I have destroyed my health by skating too much, that I took diets, or whatever. I have heard so many things. And nothing was correct. I think that skating actually helped me to be in shape for a long time. I was strong and I was doing it with love and passion, not because I had to.
But let's get back. Today, I was watching my little star on the ice and couldn't help to see me. Her problems are my problems. I was hardly holding my tears. What if I transmitted the incorrect genes to her. I do not want her to suffer, to go the way I am undergoing. I am only hoping that everything goes forward. But I am scared. There is no cure for this and I really do not see any real movement forward. I have in my mind a black humour joke: A cured patient is a lost customer. That is how I feel most of the time.
I am terribly scared. I feel like that I am the biggest looser. Not because of me, but because I have ruined someone's life. Ok, I didn't know about it until she was actually born. But, nobody can help me to feel bad for possible future pain of my daughter because if me.
Also it means how I am careful about my kids health. I am crazy about getting in contact with other people. As much I love contact, I hate to touch anyone or anything in public. Sorry for that. If anyone sneeze, I would be most happy to transport my kids home into rather sterilized environment. You know, for many of you, cold means just cold, no worries. But for me it could mean a huge trouble. I am getting out from any simple cold about 3 weeks, having all kind of complications from sinusitis into lupus flare, which is like going through death zone. My disease is spreading. Right now, I have inflammation of my left hip, which is first sign of Ankylosing spondylitis.
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| My little star |
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