With an eating disorder.

S

strivingstar

New member
Hi Sara. I just wanted to let you know that you are not alone. I'm now 30, diagnosed with CF as a baby and diagnosed with having ED. Generally my CF has been VERY good over the years which I am very thankful for. However in 2008 my ED finally pushed my CF. As you know the lower your BMI the more stress it puts on your lungs. In fall 2008 I was admitted into the hospital ED program on a full time basis which meant I had to take a leave of absence from work. I still go for meals and support while going to work which is a lot of work emotionally but I think it's the only way I can manage everything. I have a hard time disassociating myself away from either illness...I feel that they both define me...however I"m working with the psychiatrist to get past it.... Does it suck? Of course it does and it brings me down but talking to others about it always makes it seem less defeating. You never know what the future holds so always hold onto hope.
<br />
 
S

Sorenda25

New member
Hi  Sara, Ive never had an eating disorder but I can definitely relate to what you are going through.  As a person who has had CF for 31 years.  It is a struggle everyday.  I was very active as a kid so most of the time I was thin.  It wasnt till I hit highschool that I put on weight. At the time its very hard because you want to look a certain way.  However people who have Cf are trained basically to eat a certain way.  My doctor told me to eat what ever I wanted. So I did.  And I was never over weight but I was never comfortable with my bdy.  Constantly covering up even when it was hot outside. I was never allowed to diet.  My doctor would have  had a stroke if I did.  But when I became Diabetic.  I lost a dramatic amount of weight..I weighed about 91lbs. At that point ...I couldnt even breathe on my own.  Gaining weight was a struggle for me for many years.  It wasnt until I got my diabetes under control that I started to gain weight again.  When you are low weight nothing is going well. You lose your menstraul cycle, your pfts are low, your energy is low, your kidneys start to fail, you also lose bone structure.  Having CF is hard enough.  If you really want to live to your 30th birthday.. I think you should talk to somebody. I almost died twice.  I value my life more now than ever.  I pray that you value yours.
                   Joanie  CF- 31 years
 
S

Sorenda25

New member
Hi Sara, Ive never had an eating disorder but I can definitely relate to what you are going through. As a person who has had CF for 31 years. It is a struggle everyday. I was very active as a kid so most of the time I was thin. It wasnt till I hit highschool that I put on weight. At the time its very hard because you want to look a certain way. However people who have Cf are trained basically to eat a certain way. My doctor told me to eat what ever I wanted. So I did. And I was never over weight but I was never comfortable with my bdy. Constantly covering up even when it was hot outside. I was never allowed to diet. My doctor would have had a stroke if I did. But when I became Diabetic. I lost a dramatic amount of weight..I weighed about 91lbs. At that point ...I couldnt even breathe on my own. Gaining weight was a struggle for me for many years. It wasnt until I got my diabetes under control that I started to gain weight again. When you are low weight nothing is going well. You lose your menstraul cycle, your pfts are low, your energy is low, your kidneys start to fail, you also lose bone structure. Having CF is hard enough. If you really want to live to your 30th birthday.. I think you should talk to somebody. I almost died twice. I value my life more now than ever. I pray that you value yours.
Joanie CF- 31 years
 
S

Sorenda25

New member
<p>Hi Sara, Ive never had an eating disorder but I can definitely relate to what you are going through. As a person who has had CF for 31 years. It is a struggle everyday. I was very active as a kid so most of the time I was thin. It wasnt till I hit highschool that I put on weight. At the time its very hard because you want to look a certain way. However people who have Cf are trained basically to eat a certain way. My doctor told me to eat what ever I wanted. So I did. And I was never over weight but I was never comfortable with my bdy. Constantly covering up even when it was hot outside. I was never allowed to diet. My doctor would have had a stroke if I did. But when I became Diabetic. I lost a dramatic amount of weight..I weighed about 91lbs. At that point ...I couldnt even breathe on my own. Gaining weight was a struggle for me for many years. It wasnt until I got my diabetes under control that I started to gain weight again. When you are low weight nothing is going well. You lose your menstraul cycle, your pfts are low, your energy is low, your kidneys start to fail, you also lose bone structure. Having CF is hard enough. If you really want to live to your 30th birthday.. I think you should talk to somebody. I almost died twice. I value my life more now than ever. I pray that you value yours.
<p> Joanie CF- 31 years
 
S

sawyer

New member
You are definitely not alone. When I was 14 I started worrying about my body and the fact that everyone was trying to get me to gain weight. I was very small, but wanted to be smaller still so I wouldn't eat if I could help it. The fact that I have CF actually helped me because it was an easy excuse- people expected me to struggle to put on weight so when I went to the hospital and got weighed every month no one really suspected a thing. About 2 years after that, when I was almost 16, they wanted to give me a peg. As you can imagine I freaked out! I was in control of every single thing that went inside my body so to be in hospital and have someone else managing that was my absolute worst nightmare. No one had thought I had an eating disorder though, they still thought it was my CF that was making it difficult to gain weight. I assured my doctors that I didn't need a peg and that I'd gain weight and that's when the big problems started. My parents started paying attention to what I ate and my weight became a huge deal. It always had been for me, but now everybody was asking about it which totally freaked me out. I started pretending to feel sick at meal times, or "eating out" so my parents couldn't watch me. I realised I needed to put on weight to get the doctors off my back so I'd put weights in my pockets every time I got on the scales. It didn't take long for people to start realising there was a problem- I was eating, I was gaining weight on the scales, but my body was wasting away. Just before my 17th birthday I ended up in hospital after fainting at school. My doctor was brutally honest with me and told me if I kept going the way I was going I would die. It helped me for a few months but I would still feel repulsive every time I ate something. I relapsed a few times until I met a guy who probably saved my life. I fell in love and for the first time I cared about someone more than I cared about my body- I was willing to do anything for him, including put on weight. He was amazing as well and helped me get better. To an extent. I still have some lingering issues today. I'm still underweight for my size and I don't think I'll ever be completely happy with the way I look. I don't admit this to many people but when I look back at photoso of when I was 16/17 and at my worst I think I looked great and am a little sad I'm so big now. Even though logically I know I'm not and I do know how unhealthy I was then.

Sorry for writing so much but I guess your post just brought it all back! I hope reading about someone with similar issues helps! <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
S

sawyer

New member
You are definitely not alone. When I was 14 I started worrying about my body and the fact that everyone was trying to get me to gain weight. I was very small, but wanted to be smaller still so I wouldn't eat if I could help it. The fact that I have CF actually helped me because it was an easy excuse- people expected me to struggle to put on weight so when I went to the hospital and got weighed every month no one really suspected a thing. About 2 years after that, when I was almost 16, they wanted to give me a peg. As you can imagine I freaked out! I was in control of every single thing that went inside my body so to be in hospital and have someone else managing that was my absolute worst nightmare. No one had thought I had an eating disorder though, they still thought it was my CF that was making it difficult to gain weight. I assured my doctors that I didn't need a peg and that I'd gain weight and that's when the big problems started. My parents started paying attention to what I ate and my weight became a huge deal. It always had been for me, but now everybody was asking about it which totally freaked me out. I started pretending to feel sick at meal times, or "eating out" so my parents couldn't watch me. I realised I needed to put on weight to get the doctors off my back so I'd put weights in my pockets every time I got on the scales. It didn't take long for people to start realising there was a problem- I was eating, I was gaining weight on the scales, but my body was wasting away. Just before my 17th birthday I ended up in hospital after fainting at school. My doctor was brutally honest with me and told me if I kept going the way I was going I would die. It helped me for a few months but I would still feel repulsive every time I ate something. I relapsed a few times until I met a guy who probably saved my life. I fell in love and for the first time I cared about someone more than I cared about my body- I was willing to do anything for him, including put on weight. He was amazing as well and helped me get better. To an extent. I still have some lingering issues today. I'm still underweight for my size and I don't think I'll ever be completely happy with the way I look. I don't admit this to many people but when I look back at photoso of when I was 16/17 and at my worst I think I looked great and am a little sad I'm so big now. Even though logically I know I'm not and I do know how unhealthy I was then.

Sorry for writing so much but I guess your post just brought it all back! I hope reading about someone with similar issues helps! <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
S

sawyer

New member
You are definitely not alone. When I was 14 I started worrying about my body and the fact that everyone was trying to get me to gain weight. I was very small, but wanted to be smaller still so I wouldn't eat if I could help it. The fact that I have CF actually helped me because it was an easy excuse- people expected me to struggle to put on weight so when I went to the hospital and got weighed every month no one really suspected a thing. About 2 years after that, when I was almost 16, they wanted to give me a peg. As you can imagine I freaked out! I was in control of every single thing that went inside my body so to be in hospital and have someone else managing that was my absolute worst nightmare. No one had thought I had an eating disorder though, they still thought it was my CF that was making it difficult to gain weight. I assured my doctors that I didn't need a peg and that I'd gain weight and that's when the big problems started. My parents started paying attention to what I ate and my weight became a huge deal. It always had been for me, but now everybody was asking about it which totally freaked me out. I started pretending to feel sick at meal times, or "eating out" so my parents couldn't watch me. I realised I needed to put on weight to get the doctors off my back so I'd put weights in my pockets every time I got on the scales. It didn't take long for people to start realising there was a problem- I was eating, I was gaining weight on the scales, but my body was wasting away. Just before my 17th birthday I ended up in hospital after fainting at school. My doctor was brutally honest with me and told me if I kept going the way I was going I would die. It helped me for a few months but I would still feel repulsive every time I ate something. I relapsed a few times until I met a guy who probably saved my life. I fell in love and for the first time I cared about someone more than I cared about my body- I was willing to do anything for him, including put on weight. He was amazing as well and helped me get better. To an extent. I still have some lingering issues today. I'm still underweight for my size and I don't think I'll ever be completely happy with the way I look. I don't admit this to many people but when I look back at photoso of when I was 16/17 and at my worst I think I looked great and am a little sad I'm so big now. Even though logically I know I'm not and I do know how unhealthy I was then.
<br />
<br />Sorry for writing so much but I guess your post just brought it all back! I hope reading about someone with similar issues helps! <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
J

justdance

New member
<P>Hi Sara,</P>
<P> </P>
<P>Well it looks like your question has been answered- there <EM><EM>are</EM> other cfers out there with an ED.</EM></P>
<P> </P>
<P>I was one. I'm 26 now and, like you, was ridiculously healthy all my life. Always good weight, really good PFTs, good at sports and school etc. </P>
<P> </P>
<P>I was kind of bullied around age 12, a very delicate age for a girl's developing ego. It affected my self esteem really badly for years. Probably still does a bit. Anyway to get to the point I started controlling what I ate in college, about age 20. I did the college fashion show and things really took off. I got so much satisfaction in controlling my weight. The docs weren't long noticing, neither was my mom. It was just so easy for me to shed the ounds- either skip meals or skip enzymes.</P>
<P> </P>
<P>Sara you have to get control of this. My PFTs went down and down until I ended up doing a very upsetting couple of weeks in hospital being fed through my nose and having assessments from the psychiatric team- all while dealing with my low, low self esteem. It's painful remembering this. But, thank God, I came out of it and (double thank God) I regained my health.</P>
<P> </P>
<P>Your great health is sooo delicate Sara, it won't withstand a low body weight. I mean it- you have CF so you cannot afford this- you won't win. Don't gamble cos the day you lose it it could be too late to go back. Please get counselling, it saved my skinny ass, which is now nice and peachy.</P>
<P> </P>
<P>Good luck, wish you well!</P>
 
J

justdance

New member
<P>Hi Sara,</P>
<P></P>
<P>Well it looks like your question has been answered- there <EM><EM>are</EM> other cfers out there with an ED.</EM></P>
<P></P>
<P>I was one. I'm 26 now and, like you, was ridiculously healthy all my life. Always good weight, really good PFTs, good at sports and schooletc. </P>
<P></P>
<P>I was kind of bullied around age 12, a very delicate age for a girl's developing ego. It affected my self esteem really badly for years. Probably still does a bit. Anyway to get to the point I started controlling what I ate in college, about age 20. I did the college fashion show and things really took off. I got so much satisfaction in controlling my weight. The docs weren't long noticing, neither was my mom. It was just so easy for me to shed the ounds- either skip meals or skip enzymes.</P>
<P></P>
<P>Sara you have to get control of this. My PFTs went down and down until I ended up doing a very upsetting couple of weeks in hospital being fed through my nose and having assessments from the psychiatric team- all while dealing with my low, low self esteem. It's painful remembering this. But, thank God, I came out of it and (double thank God) I regained my health.</P>
<P></P>
<P>Your great health is sooo delicate Sara, it won't withstand a low body weight. I mean it- you have CF so you cannot afford this- you won'twin.Don't gamble cos the day you lose it it could be too late to go back. Please get counselling, it saved my skinny ass, which is now nice and peachy.</P>
<P></P>
<P>Good luck, wish you well!</P>
 
J

justdance

New member
<P><BR>Hi Sara,</P>
<P></P>
<P>Well it looks like your question has been answered- there <EM><EM>are</EM> other cfers out there with an ED.</EM></P>
<P></P>
<P>I was one. I'm 26 now and, like you, was ridiculously healthy all my life. Always good weight, really good PFTs, good at sports and schooletc. </P>
<P></P>
<P>I was kind of bullied around age 12, a very delicate age for a girl's developing ego. It affected my self esteem really badly for years. Probably still does a bit. Anyway to get to the point I started controlling what I ate in college, about age 20. I did the college fashion show and things really took off. I got so much satisfaction in controlling my weight. The docs weren't long noticing, neither was my mom. It was just so easy for me to shed the ounds- either skip meals or skip enzymes.</P>
<P></P>
<P>Sara you have to get control of this. My PFTs went down and down until I ended up doing a very upsetting couple of weeks in hospital being fed through my nose and having assessments from the psychiatric team- all while dealing with my low, low self esteem. It's painful remembering this. But, thank God, I came out of it and (double thank God) I regained my health.</P>
<P></P>
<P>Your great health is sooo delicate Sara, it won't withstand a low body weight. I mean it- you have CF so you cannot afford this- you won'twin.Don't gamble cos the day you lose it it could be too late to go back. Please get counselling, it saved my skinny ass, which is now nice and peachy.</P>
<P></P>
<P>Good luck, wish you well!</P>
 
C

CFtori

New member
I'm glad i'm not alone on this. I have CF and have been a freak of CF nature almost all my life. My PFTs usually maintain above 70 and I have only been hospitalized 4 times. I'm a 13 year old girl (14 in 2 weeks) going into the 9th grade. I have noticed that when I eat, I get extremely bloated and so now, I hate to eat. Lately, I haven't been eating as much as I should and everyday, if I eat nothing my weight drops around 5 pounds. I am extremely self conscious. I would like to know if I continue this, will it effect my health? In what way?
 
C

CFtori

New member
I'm glad i'm not alone on this. I have CF and have been a freak of CF nature almost all my life. My PFTs usually maintain above 70 and I have only been hospitalized 4 times. I'm a 13 year old girl (14 in 2 weeks) going into the 9th grade. I have noticed that when I eat, I get extremely bloated and so now, I hate to eat. Lately, I haven't been eating as much as I should and everyday, if I eat nothing my weight drops around 5 pounds. I am extremely self conscious. I would like to know if I continue this, will it effect my health? In what way?
 
C

CFtori

New member
I'm glad i'm not alone on this. I have CF and have been a freak of CF nature almost all my life. My PFTs usually maintain above 70 and I have only been hospitalized 4 times. I'm a 13 year old girl (14 in 2 weeks) going into the 9th grade. I have noticed that when I eat, I get extremely bloated and so now, I hate to eat. Lately, I haven't been eating as much as I should and everyday, if I eat nothing my weight drops around 5 pounds. I am extremely self conscious. I would like to know if I continue this, will it effect my health? In what way?
 
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