My daughter is 16 and very depressed about the amount of medication she must take. She feels it is not helping and has no hope of ever feeling well again. She has been considerably healthy until this year ( no hospitalizations) when she went into the hospital for tune-ups twice this calendar year. Her veins could not handle the toxcitiy of the medications giving her severe phlebiitis in both arms. She now is taking cipro, prednosoe, and clistamine. Her stomach is upset and she can't eat. Any one know of a way to encourage her? We are so sad.
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depression
- Thread starter anonymous
- Start date
See my post, and the other post or two on using oregano oil to treat CF symptoms. She is nearly an adult, so her body is very close to being fully developed, but she is very depressed, and rightfully so. If she can use oregano oil to lessen her symptoms/bacteria count/strains, and if she reacts to it as well as I have (and hopefully as well as others will), when she goes to visit her doc next time around, he might even remove some of her meds, which would mean less BS for her to deal with, and probably less depression.
I know how Your daughter feels. I only had to go on IV's twice in high school, but for the past 2 years I've been on Lots of IV's, in and out of the hosptial maby 12 times, and 2 sinus surgerys. But I've found things to do when I'm out. I've been to Thailand, Vancouver and Whistler twice. It is very hard to plan trips but it can be done. I also got a Ducati motorcycle, it puts a smile on my face everytime I ride it, and I forget about the CF thing. If You or Your daughter want somebody to talk about life with CF feel free to send me an email at colinmaydahl@gmail.com
Have a good day
Colin Maydahl
Have a good day
Colin Maydahl
I know when you've been healthy for a long time and then have a set back you start to feel that this is the beginning of the end. I bet there were times when all of us this board have felt that way and were very glad that we bounced back to where we were before the set back. One of my CF friends had a whole 6 month period where he was catching every cold, not feeling well, etc and finally came out of it and got back to his baseline. We all have ups and downs with CF. When I have temporary set-backs I just tell myself that I'm having a 'speed bump in the road of life' and try to do the best that I can to take care of myself to get over that bump.
I hope this has helped.
Hope
I hope this has helped.
Hope
JennifersHope
New member
Hi,
I am sorry for all the stuff your daughter is going through.... Sometimes it seems like the healthy we are the harder it is to accept that fact that we still have to take meds and do our stuff... Two hospital stays in a year can be rough on a 16 year old, especially since it was her two first ones... I don't really know what to say about that.. I don't want to say she will get used to it or anything else that would seem insensitive...
I did want to say that I noticed she is on Prednisone.. steroids can really mess with your emotions.. It can make you more moody, angry, mushy, and also depressed.. If I could think of anything to say as advice I would say to support her as best as you can.. still voice your thoughts and whatever you want to say because that is important. but I would wait till she is weaned off the prednisone and see if her mood changes...
I can tell you as a Cfer and someone who is sick pretty often with one thing or another, after a few bad days of pain. sickness, or whatever and my mood goes right down the drain......but I always bounce back with the help and loving support of my loved ones....
Hang in there.. I have said this a million times.. It is truly harder to watch a love one suffer sometimes then to be the one suffer.. I can say that cause I have experience on both ends.....
In my thoughts and prayers,
Jennifer
I am sorry for all the stuff your daughter is going through.... Sometimes it seems like the healthy we are the harder it is to accept that fact that we still have to take meds and do our stuff... Two hospital stays in a year can be rough on a 16 year old, especially since it was her two first ones... I don't really know what to say about that.. I don't want to say she will get used to it or anything else that would seem insensitive...
I did want to say that I noticed she is on Prednisone.. steroids can really mess with your emotions.. It can make you more moody, angry, mushy, and also depressed.. If I could think of anything to say as advice I would say to support her as best as you can.. still voice your thoughts and whatever you want to say because that is important. but I would wait till she is weaned off the prednisone and see if her mood changes...
I can tell you as a Cfer and someone who is sick pretty often with one thing or another, after a few bad days of pain. sickness, or whatever and my mood goes right down the drain......but I always bounce back with the help and loving support of my loved ones....
Hang in there.. I have said this a million times.. It is truly harder to watch a love one suffer sometimes then to be the one suffer.. I can say that cause I have experience on both ends.....
In my thoughts and prayers,
Jennifer
I would definitely agree with Jennifershope about prednisone and talk to her doctor perhaps about taking her off of it. Steroids can have a lot of bad long term effects; physically and emotionally, and she might do well on another regimen. What kind of bugs does she culture??
Caitlin
Caitlin
I'm not sure how long your daughter has been depressed, or whether it has anything to do with the prednisone but i do know that the one time i was on Prednisone i was a completely different person. it was horrible...i've never been depressed but i was never happy and extrememly moody. just like jennifer said, it makes you angry, sad, annoyed...all things and you cant control it. i think you should speak to the dr about that (if her moods have changed since being on Prednisone) and maybe talk about taking her off it and other alternatives. if there are any other alternatives i would go for it because i dont ever want to be steroids again so wouldnt blame her for not wanting too either.
hope it all works out well. take care.
oh also- the upset stomach/unable to eat could have something to do with cipro. i havent been on cipro for a number of years but when i was i was often nauseated and never felt like eating.
hope that helps, even if only a little!
hope it all works out well. take care.
oh also- the upset stomach/unable to eat could have something to do with cipro. i havent been on cipro for a number of years but when i was i was often nauseated and never felt like eating.
hope that helps, even if only a little!
I'm sorry to hear how your daughter is feeling. My daughter with CF is 20 and I can't explain to anyone the feeling I get watching, listening to her and seeing the affect it has and she doesn't have as many problems and she copes really well compared with many others with CF. My heart just breaks for her and all kids and adults with CF. In the good times when they are "well" it is hard to imagine as CF can seem "not too bad". Then it hits and Wow, itis the worst disease ever and is heartbreaking.
I myself have taken Prednisolone for bronchiectasis & apba and it does awful things to oneself. I know at times it is imperative to take but whilst on it, it can cause one to be very depressed, confused, unable to eat, unable to stop eating, hair growing on face, bloating, crying, muddled, chest feeling like in a vice. All kinds of things particularly feeling like in someone elses body and just not thinking with clarity and the feeling of the "joy" just gone.
I think the drugs have a lot to do with emotions and I am thinking of you both and your loved ones. From my experience it is hard to feel, see anything clearly when on steroids.
Warm wishes
X
I myself have taken Prednisolone for bronchiectasis & apba and it does awful things to oneself. I know at times it is imperative to take but whilst on it, it can cause one to be very depressed, confused, unable to eat, unable to stop eating, hair growing on face, bloating, crying, muddled, chest feeling like in a vice. All kinds of things particularly feeling like in someone elses body and just not thinking with clarity and the feeling of the "joy" just gone.
I think the drugs have a lot to do with emotions and I am thinking of you both and your loved ones. From my experience it is hard to feel, see anything clearly when on steroids.
Warm wishes
X
JennifersHope
New member
I am getting depressed reading this post....I know I contributed to it..but being that I am stuck on Prednisone for the rest of my life....It sucks and my body is going to pot so fast because of it..I am also starting to wonder if the steroids are effecting the way I think and feel about things... like I wonder if I would feel mad at the same things or I wonder if I would still think a certain way if I wasn't on steroids. I have also learned in school how aweful they are to your body and how they take years off your life....GOsh I can't go there... or I will make myself nuts.....anyway
I do have to say though, for anyone like myself stuck on it... ( I am because I have adrenal failure not for transplant) once your body gets used to the dose you are on... your emotions do level off.. until you change the dose again.. then it is whacky city again...I do wish their was an alternative to steroids though..
Sorry to go off topic..but everyones including mine, rightly so negative response to steroids.. got me freaked out..
Jennifer
I do have to say though, for anyone like myself stuck on it... ( I am because I have adrenal failure not for transplant) once your body gets used to the dose you are on... your emotions do level off.. until you change the dose again.. then it is whacky city again...I do wish their was an alternative to steroids though..
Sorry to go off topic..but everyones including mine, rightly so negative response to steroids.. got me freaked out..
Jennifer
cfgirl2008
New member
If your daughter will like to she can email me at maxfieldtiff@gaggle.net
tiffany 15 w/cf
tiffany 15 w/cf