Monday, July 31, 2006
Rave of the Day for July 30, 2006:
I got this from the But You Don't Look Sick newsletter. The author is the webmistress, Christine. It gives you an honest inside look at how chronic illness can color even the best of times. I thought it was important to share....
The Birthday Blues
It was my birthday this week and I have been in a funk, depressed, and moody and no one really understands why. Birthdays are occasions for presents, friends, and usually a few candles to blow out. Everyone around me has tried to cheer me up with lunch dates, surprise parties and lots of chocolate cake. My mother even planned a tea party with all my close girlfriends. I tried to smile, and enjoy the mini-celebrations I had all week. Don't get me wrong, I am very appreciative of the gestures of friendship and love that I received. I know that turning 29 is not a tragedy, but there was something about turning this very specific number that no one else seemed to understand. I tried to vocalize it, but I got the typical responses of "well at least you're not thirty", or "You're so young, what's the fuss!?" I just smiled, said nothing, and knew that they didn't understand.
I always joke that when you meet other people who have dealt with illness, it is like a secret society of the sick- a sisterhood with hidden looks, phrases, and handshakes. It seems like we are more understanding of each other's special circumstances, than the "healthy world". We don't pity, we don't get uncomfortable at medical talk, and we certainly don't laugh at each other's issues. We find humor in sometimes morbid topics, and we have a language all our own. Nothing is off limits to talk about and somehow everything makes sense. So one night when my birthday blues kept me up most of the night, I decided to call one of my "Lupie" friends. We don't talk often, but when we do, we catch up in two minutes and it seems like we never lost touch.
I was talking on the phone and suddenly began to cry about my birthday. She asked why and I explained to her that it was nothing anyone did. I had a great day, and an even better week. I received phone calls, emails and cards from people who remembered this special day. I am engaged to a wonderful man, and will soon be married. My brother and his wife are expecting their first child this year and I am ready to be the best aunt ever. I am healthy and happy and 29 on paper seems like it would be my best year yet. I have so much to look forward to.
What everyone didn't realize is that 29 is the official year that I will now be living with lupus, longer than I have lived without it. My memories of living healthy are fading and my realities of living sick are very vivid and real. In fact, there are times I really do not know what it was like to live healthy. I don't remember a time without doctor's visits, pills and pain. Even on my healthiest days, it is still there looming in the background. I began getting sick at 14, diagnosed the same year. This year, I can truthfully say, that I have been living with lupus more than 1/2 my life. I guess that is a very scary sentence. It is scary to type, even scarier to live.
Don't get me wrong, I can honestly say that I am the happiest I have ever been in my life. I have never been more confident that I am exactly where I am supposed to be in this world. But I guess the happier you get, the healthier you want to be. The more in love I fall, the healthier of a wife and mother I want to be. There are more things I wish I had the energy to do, and there is more time I wish I had to be with the ones I love, and not too tired to enjoy them. I think I was mentally prepared to be "really sick" when I was older. Not now. Not that there is ever a good time to be sick, but I was ready to live my life, get married, have kids, go to Paris and then some time after that- get sick. I wasn't thrilled at the idea, but given the option of sooner or later, I wanted later. I wanted to live in remission for now. I pictured myself 29 and having a cosmopolitan in the city and dancing with my friends. My 29th birthday was a little different this year than I imagined. I had a massage/ spa day, went to a wonderful dinner, and came home and fell asleep. I was uninspired, depressed and sad. My birthday was great, but this 1/2 of my life was not. The 1/2 of my life with lupus. I guess no one likes getting sick or dealing with anything hard.
29 was hard for me to turn, because I was focusing on all the time and things that I felt lupus took away from me. I lost my career as a dancer, I lost my health, I lost friends, heck I have even lost hair! But now, after a few days... I am starting to perk up. I am trying to focus on what having lupus 1/2 my life has given me. It is hard to do. Having lupus 1/2 my life has given me a closer relationship with my family. We have spent many nights together in hospitals, and I have had to rely on them for support. I think having lupus has made me a stronger person. I have faced so much, that now a bad hair day, or waiting in line at the supermarket doesn't fluster me. I have learned who my friends are. If they are here, despite my "foggy brain" and tired legs, then I know they are good friends. I have learned patience, and to value love more than anything else. Having lupus has also made me a more creative person then I ever thought I could be. When I had to stop dancing, I thought my creative side was dead, now I realize that I let my words dance circles on the page, and hopefully touch people deeper than my pointed toes ever could.
I was dreading this birthday for a long time. But now I am realizing that having lupus is a part of who I am, whether I like it or not. Turning 29 is not going to make my lupus better or worse, it is just going to make me 29. It is going to make me- me. I think I am getting better as I get older. I am no longer that scared little girl. I know what I need and what I want, and I am not willing to compromise. I know who I am and I am not going to change for anyone. Although my body may be weak, I am a strong woman. A strong, proud 29 year old woman.
The Birthday Blues
It was my birthday this week and I have been in a funk, depressed, and moody and no one really understands why. Birthdays are occasions for presents, friends, and usually a few candles to blow out. Everyone around me has tried to cheer me up with lunch dates, surprise parties and lots of chocolate cake. My mother even planned a tea party with all my close girlfriends. I tried to smile, and enjoy the mini-celebrations I had all week. Don't get me wrong, I am very appreciative of the gestures of friendship and love that I received. I know that turning 29 is not a tragedy, but there was something about turning this very specific number that no one else seemed to understand. I tried to vocalize it, but I got the typical responses of "well at least you're not thirty", or "You're so young, what's the fuss!?" I just smiled, said nothing, and knew that they didn't understand.
I always joke that when you meet other people who have dealt with illness, it is like a secret society of the sick- a sisterhood with hidden looks, phrases, and handshakes. It seems like we are more understanding of each other's special circumstances, than the "healthy world". We don't pity, we don't get uncomfortable at medical talk, and we certainly don't laugh at each other's issues. We find humor in sometimes morbid topics, and we have a language all our own. Nothing is off limits to talk about and somehow everything makes sense. So one night when my birthday blues kept me up most of the night, I decided to call one of my "Lupie" friends. We don't talk often, but when we do, we catch up in two minutes and it seems like we never lost touch.
I was talking on the phone and suddenly began to cry about my birthday. She asked why and I explained to her that it was nothing anyone did. I had a great day, and an even better week. I received phone calls, emails and cards from people who remembered this special day. I am engaged to a wonderful man, and will soon be married. My brother and his wife are expecting their first child this year and I am ready to be the best aunt ever. I am healthy and happy and 29 on paper seems like it would be my best year yet. I have so much to look forward to.
What everyone didn't realize is that 29 is the official year that I will now be living with lupus, longer than I have lived without it. My memories of living healthy are fading and my realities of living sick are very vivid and real. In fact, there are times I really do not know what it was like to live healthy. I don't remember a time without doctor's visits, pills and pain. Even on my healthiest days, it is still there looming in the background. I began getting sick at 14, diagnosed the same year. This year, I can truthfully say, that I have been living with lupus more than 1/2 my life. I guess that is a very scary sentence. It is scary to type, even scarier to live.
Don't get me wrong, I can honestly say that I am the happiest I have ever been in my life. I have never been more confident that I am exactly where I am supposed to be in this world. But I guess the happier you get, the healthier you want to be. The more in love I fall, the healthier of a wife and mother I want to be. There are more things I wish I had the energy to do, and there is more time I wish I had to be with the ones I love, and not too tired to enjoy them. I think I was mentally prepared to be "really sick" when I was older. Not now. Not that there is ever a good time to be sick, but I was ready to live my life, get married, have kids, go to Paris and then some time after that- get sick. I wasn't thrilled at the idea, but given the option of sooner or later, I wanted later. I wanted to live in remission for now. I pictured myself 29 and having a cosmopolitan in the city and dancing with my friends. My 29th birthday was a little different this year than I imagined. I had a massage/ spa day, went to a wonderful dinner, and came home and fell asleep. I was uninspired, depressed and sad. My birthday was great, but this 1/2 of my life was not. The 1/2 of my life with lupus. I guess no one likes getting sick or dealing with anything hard.
29 was hard for me to turn, because I was focusing on all the time and things that I felt lupus took away from me. I lost my career as a dancer, I lost my health, I lost friends, heck I have even lost hair! But now, after a few days... I am starting to perk up. I am trying to focus on what having lupus 1/2 my life has given me. It is hard to do. Having lupus 1/2 my life has given me a closer relationship with my family. We have spent many nights together in hospitals, and I have had to rely on them for support. I think having lupus has made me a stronger person. I have faced so much, that now a bad hair day, or waiting in line at the supermarket doesn't fluster me. I have learned who my friends are. If they are here, despite my "foggy brain" and tired legs, then I know they are good friends. I have learned patience, and to value love more than anything else. Having lupus has also made me a more creative person then I ever thought I could be. When I had to stop dancing, I thought my creative side was dead, now I realize that I let my words dance circles on the page, and hopefully touch people deeper than my pointed toes ever could.
I was dreading this birthday for a long time. But now I am realizing that having lupus is a part of who I am, whether I like it or not. Turning 29 is not going to make my lupus better or worse, it is just going to make me 29. It is going to make me- me. I think I am getting better as I get older. I am no longer that scared little girl. I know what I need and what I want, and I am not willing to compromise. I know who I am and I am not going to change for anyone. Although my body may be weak, I am a strong woman. A strong, proud 29 year old woman.
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