Share your Stories w/ me

L

lilMeggies

New member
Hello everyone Im meghan I'm sure most of you do not know me I'm 21 (turning 22 in march) and I have Cystic Fibrosis. I'm currently in college for Medical Office Admin and in my Family Sociology class I'm doing a presentation on Effects of Chronically Ill children on Families...if some on you could share your stories of the stress you have dealt with, Financal difficulties, how you over come these issues or anything else you can think of, it would be most appreciated your names will not be used. If you feel it's to private for the forum private message me...thanks alot guys and take care.
 
L

lilMeggies

New member
Hello everyone Im meghan I'm sure most of you do not know me I'm 21 (turning 22 in march) and I have Cystic Fibrosis. I'm currently in college for Medical Office Admin and in my Family Sociology class I'm doing a presentation on Effects of Chronically Ill children on Families...if some on you could share your stories of the stress you have dealt with, Financal difficulties, how you over come these issues or anything else you can think of, it would be most appreciated your names will not be used. If you feel it's to private for the forum private message me...thanks alot guys and take care.
 
L

lilMeggies

New member
Hello everyone Im meghan I'm sure most of you do not know me I'm 21 (turning 22 in march) and I have Cystic Fibrosis. I'm currently in college for Medical Office Admin and in my Family Sociology class I'm doing a presentation on Effects of Chronically Ill children on Families...if some on you could share your stories of the stress you have dealt with, Financal difficulties, how you over come these issues or anything else you can think of, it would be most appreciated your names will not be used. If you feel it's to private for the forum private message me...thanks alot guys and take care.
 
P

PACmommy

New member
Hi Meghan, I'm also from ontario and am a new CF mom, I have 3 kids 5, 3, and 1. Our middle child, our only girl was diagnosed with CF in September and I feel your study touches base with alot of my personal concerns.
The past year for our family has been difficult. My husband lost his job because the company he worked for went under, he is now on his third job in the past year doing an apprenticeship. Because of financial restraints, I went took a job waitressing part time when my youngest was 6 mths old (something I did not want to do). When our daughter was diagnosed, I felt despite a tight budget, I was needed more at home, so I quit and decided to focus all my attention on our children and health concerns.
Stress is a constant issue. I worry about the budget, about my daughter's health and whether I'm still giving all three of them equal and adequate attention. I'm often left feeling like there are not enough hours in the day to do everything.
Nobody knows how stressed I really am and how resentful I feel towards others who can't understand what I go through on a daily basis.
The way I deal with it is one day at a time. I focus on how my daughters health is today, what bills need to be paid today, and whether there is enough today. When the day is done, I let go and focus on a new day and know God will pull us through today just like he did yesterday.
 
P

PACmommy

New member
Hi Meghan, I'm also from ontario and am a new CF mom, I have 3 kids 5, 3, and 1. Our middle child, our only girl was diagnosed with CF in September and I feel your study touches base with alot of my personal concerns.
The past year for our family has been difficult. My husband lost his job because the company he worked for went under, he is now on his third job in the past year doing an apprenticeship. Because of financial restraints, I went took a job waitressing part time when my youngest was 6 mths old (something I did not want to do). When our daughter was diagnosed, I felt despite a tight budget, I was needed more at home, so I quit and decided to focus all my attention on our children and health concerns.
Stress is a constant issue. I worry about the budget, about my daughter's health and whether I'm still giving all three of them equal and adequate attention. I'm often left feeling like there are not enough hours in the day to do everything.
Nobody knows how stressed I really am and how resentful I feel towards others who can't understand what I go through on a daily basis.
The way I deal with it is one day at a time. I focus on how my daughters health is today, what bills need to be paid today, and whether there is enough today. When the day is done, I let go and focus on a new day and know God will pull us through today just like he did yesterday.
 
P

PACmommy

New member
Hi Meghan, I'm also from ontario and am a new CF mom, I have 3 kids 5, 3, and 1. Our middle child, our only girl was diagnosed with CF in September and I feel your study touches base with alot of my personal concerns.
The past year for our family has been difficult. My husband lost his job because the company he worked for went under, he is now on his third job in the past year doing an apprenticeship. Because of financial restraints, I went took a job waitressing part time when my youngest was 6 mths old (something I did not want to do). When our daughter was diagnosed, I felt despite a tight budget, I was needed more at home, so I quit and decided to focus all my attention on our children and health concerns.
Stress is a constant issue. I worry about the budget, about my daughter's health and whether I'm still giving all three of them equal and adequate attention. I'm often left feeling like there are not enough hours in the day to do everything.
Nobody knows how stressed I really am and how resentful I feel towards others who can't understand what I go through on a daily basis.
The way I deal with it is one day at a time. I focus on how my daughters health is today, what bills need to be paid today, and whether there is enough today. When the day is done, I let go and focus on a new day and know God will pull us through today just like he did yesterday.
 
A

abcd12345

New member
Hi Meghan,
My daughter was diagnosed seven months ago, and life has been kind of foggy ever since. My husband and I are both very positive people, and I guess being brits its all very stiff upper lip. However, deep down the feelings of fear and I think grief are at times overwhelming! It is sometimes hard to keep things in perpective and look at the bright side, other people like friends and relatives are understanding to a point, the truth of the matter is that people would rather not have to witness your world falling apart, and therefore its a lonely old life! I do also fully appreciate that these are early days, and we will all evolve with this situation. Financially we cope, I would liked to have considered a new career, but I feel for the time being my place is here with the kids, keeping it all running smoothly! You are oviously well aware, you,ve lived the whole thing yourself, and I wish you all the best for the future! Good luck Meghan!
 
A

abcd12345

New member
Hi Meghan,
My daughter was diagnosed seven months ago, and life has been kind of foggy ever since. My husband and I are both very positive people, and I guess being brits its all very stiff upper lip. However, deep down the feelings of fear and I think grief are at times overwhelming! It is sometimes hard to keep things in perpective and look at the bright side, other people like friends and relatives are understanding to a point, the truth of the matter is that people would rather not have to witness your world falling apart, and therefore its a lonely old life! I do also fully appreciate that these are early days, and we will all evolve with this situation. Financially we cope, I would liked to have considered a new career, but I feel for the time being my place is here with the kids, keeping it all running smoothly! You are oviously well aware, you,ve lived the whole thing yourself, and I wish you all the best for the future! Good luck Meghan!
 
A

abcd12345

New member
Hi Meghan,
My daughter was diagnosed seven months ago, and life has been kind of foggy ever since. My husband and I are both very positive people, and I guess being brits its all very stiff upper lip. However, deep down the feelings of fear and I think grief are at times overwhelming! It is sometimes hard to keep things in perpective and look at the bright side, other people like friends and relatives are understanding to a point, the truth of the matter is that people would rather not have to witness your world falling apart, and therefore its a lonely old life! I do also fully appreciate that these are early days, and we will all evolve with this situation. Financially we cope, I would liked to have considered a new career, but I feel for the time being my place is here with the kids, keeping it all running smoothly! You are oviously well aware, you,ve lived the whole thing yourself, and I wish you all the best for the future! Good luck Meghan!
 
O

OperaMama

New member
Five months ago my four-and-a-half-year-old boy was diagnosed after three and a half years of improperly digesting (!). We're still in the learning phase for sure, but it is so stressful to be the Schedule Meister for treatments and the Queen Nag for eating and the Super Chef for the proper diet (high fat? ew!) and the Germ Nazi when someone else dares to cough in our presence. Never mind the two-year-old sister (no CF), who sees the slavish devotion to the cause and wonders, "What about me?" Insurance? Don't get me started! No one has spare money, that's for sure, but what we can do without to ensure this demanding little guy makes it to the cure in the best condition is worth all the penny pinching there is, right?

My family and his are surprisingly clueless, but our friends are supportive to the max.
 
O

OperaMama

New member
Five months ago my four-and-a-half-year-old boy was diagnosed after three and a half years of improperly digesting (!). We're still in the learning phase for sure, but it is so stressful to be the Schedule Meister for treatments and the Queen Nag for eating and the Super Chef for the proper diet (high fat? ew!) and the Germ Nazi when someone else dares to cough in our presence. Never mind the two-year-old sister (no CF), who sees the slavish devotion to the cause and wonders, "What about me?" Insurance? Don't get me started! No one has spare money, that's for sure, but what we can do without to ensure this demanding little guy makes it to the cure in the best condition is worth all the penny pinching there is, right?

My family and his are surprisingly clueless, but our friends are supportive to the max.
 
O

OperaMama

New member
Five months ago my four-and-a-half-year-old boy was diagnosed after three and a half years of improperly digesting (!). We're still in the learning phase for sure, but it is so stressful to be the Schedule Meister for treatments and the Queen Nag for eating and the Super Chef for the proper diet (high fat? ew!) and the Germ Nazi when someone else dares to cough in our presence. Never mind the two-year-old sister (no CF), who sees the slavish devotion to the cause and wonders, "What about me?" Insurance? Don't get me started! No one has spare money, that's for sure, but what we can do without to ensure this demanding little guy makes it to the cure in the best condition is worth all the penny pinching there is, right?

My family and his are surprisingly clueless, but our friends are supportive to the max.
 
A

AidansMom

New member
hi Meghan, i'm mom to Aidan who's now just about 16 months old. i learned that i was a CF carrier while prego with Aidan but told that the chances that my husband was a carrier were so slim to not worry.

Then Aidan was born and actually passed merconium in the womb so docs said probably no CF. Well things just never seemed "right" from the get go. but i was passed off as "an overly anxious new mother". ouch. the stress started there, feeling like i was alone and no one would hear what i had to say. Aidan had very greasy oily stools (like wesson oil, very odd) and very bulky. he had a little cough/wheez until he was 2 or 3 months old. he didn't get "fat" like the doc said he would since i was breast feeding. he seemed absolutely miserable and i was practicing attachment parenting so i was jumping to his every beck and call (which in retrospect, i'm so glad i did because people tried to tell me i was "spoiling him"). his belly would rumble and he'd writhe in pain, it seemed.. i mean just one thing after another and i mentioned all of this to everyone, my family, my inlaws, his doctor(s), and EVERYONE brushed me off and made me feel horrible. i was worried they'd start thinking i had Munchausen syndrome... so i was very careful about going to the doctors office too much and ESPECIALLY the hospital. Again, more stress.. knowing that my son was hurting/suffering and being made to feel awful for noticing these things. * Parents, trust your instincts!!*

Anyway, little Aidan stopped growing at 6 months, length and weight, he just STOPPED. he regressed developmentally also, he stopped any baby babbling or actually talking that he had started doing. He then just sort of seemed a little out if it. i kept telling the doctors, i am a CF carrier, could he have CF, can you please test him.... to no avail. They kept telling me (he had cute chubby cheeks due to protein deficiency) "he doesn't look like he could have CF". Whatever! I look back and i'm like.. what ignorance that was to say something like that to me, again and again!


Finally at 8 months his pediatrician hospitalized him for "failure to thrive" and ran a battery of tests, still refusing to think that it could be CF. Pfff! Then after visiting a pediatric endocrinologist <img src="i/expressions/heart.gif" border="0">that we were referred to.. and explaining that I was a CF carrier, he said he suspected that that's what it could be and ordered a sweat test. hmmm. and yes, sure enough, after 2 more sweat tests (just for verification, with each of them the number was higher) and one genetic test it was confirmed that he did have CF.

Here comes stress and heartache post-dx....

my husband and his family refused to believe the dx. first of all... then when they decided to believe it, it was all about them and poor them.. etc. What about Aidan?!?! i was so upset that thanks to adult self-centeredness, he was being overlooked by much of the family, errrrr!

now, i just hear a lot of "horror stories" from that side of the family, which i have now asked that they please stop.

it's just bananas how things become so complicated and uncomfortable thanks to those well-meaning folks all around you.

Although in denial somewhat initially BEFORE diagnosis, My parents on the other hand are fabulous, they're super educated about CF (much more so than me) and "strong like bull". I'm actually staying with them while my husband is on a loooong deployment to the Persian Gulf for the next 8 months or so. It's actually quite nice though because Aidan and i receive nothing but positivity and loving help while in their care <img src="i/expressions/face-icon-small-smile.gif" border="0">)

Stress & worry number three.....

i'm currently pregnant with baby #2 and have decided to have testing done after birth (i'm prolife and don't see the point in risking baby girl's health with an amnio or other prenatal testing). i'm hoping that all turns out well and that she does not have to endure what her precious big brother has already had to.

Lastly.. the meds. Aidan has tested positive for Pseudomonas. the CF clinic (i love the CF clinics btw, SUCH A BLESSING!!!!!) have him on CIPRO, TOBI (neb.), he takes enzymes, zantac, ADEKs, and albuterol (inhaler + spacer) and i struggle with such guilt and horror having to watch his little body (not even 19 lbs. yet) endure these hardcore meds. i try so hard to be strong but have broken down 3 times regarding the meds. i have always been sort of anti-meds, pro-holisitc so this is very tough and i hope that it's all doing more good than harm to him. i read the Tobi booklet and read of all the side affects and basically flipped out internally, yes the panic set in inside of me and i just cry about it sometimes when i have moments alone...

I would love to hear your imput, if anyone knows about this i'm sure you do and i would truly value anything that you or anyone else on this panel have to say.

God bless everyone on here, it is such a relief to be able to connect with you folks!

Thank you,

Catie
 
A

AidansMom

New member
hi Meghan, i'm mom to Aidan who's now just about 16 months old. i learned that i was a CF carrier while prego with Aidan but told that the chances that my husband was a carrier were so slim to not worry.

Then Aidan was born and actually passed merconium in the womb so docs said probably no CF. Well things just never seemed "right" from the get go. but i was passed off as "an overly anxious new mother". ouch. the stress started there, feeling like i was alone and no one would hear what i had to say. Aidan had very greasy oily stools (like wesson oil, very odd) and very bulky. he had a little cough/wheez until he was 2 or 3 months old. he didn't get "fat" like the doc said he would since i was breast feeding. he seemed absolutely miserable and i was practicing attachment parenting so i was jumping to his every beck and call (which in retrospect, i'm so glad i did because people tried to tell me i was "spoiling him"). his belly would rumble and he'd writhe in pain, it seemed.. i mean just one thing after another and i mentioned all of this to everyone, my family, my inlaws, his doctor(s), and EVERYONE brushed me off and made me feel horrible. i was worried they'd start thinking i had Munchausen syndrome... so i was very careful about going to the doctors office too much and ESPECIALLY the hospital. Again, more stress.. knowing that my son was hurting/suffering and being made to feel awful for noticing these things. * Parents, trust your instincts!!*

Anyway, little Aidan stopped growing at 6 months, length and weight, he just STOPPED. he regressed developmentally also, he stopped any baby babbling or actually talking that he had started doing. He then just sort of seemed a little out if it. i kept telling the doctors, i am a CF carrier, could he have CF, can you please test him.... to no avail. They kept telling me (he had cute chubby cheeks due to protein deficiency) "he doesn't look like he could have CF". Whatever! I look back and i'm like.. what ignorance that was to say something like that to me, again and again!


Finally at 8 months his pediatrician hospitalized him for "failure to thrive" and ran a battery of tests, still refusing to think that it could be CF. Pfff! Then after visiting a pediatric endocrinologist <img src="i/expressions/heart.gif" border="0">that we were referred to.. and explaining that I was a CF carrier, he said he suspected that that's what it could be and ordered a sweat test. hmmm. and yes, sure enough, after 2 more sweat tests (just for verification, with each of them the number was higher) and one genetic test it was confirmed that he did have CF.

Here comes stress and heartache post-dx....

my husband and his family refused to believe the dx. first of all... then when they decided to believe it, it was all about them and poor them.. etc. What about Aidan?!?! i was so upset that thanks to adult self-centeredness, he was being overlooked by much of the family, errrrr!

now, i just hear a lot of "horror stories" from that side of the family, which i have now asked that they please stop.

it's just bananas how things become so complicated and uncomfortable thanks to those well-meaning folks all around you.

Although in denial somewhat initially BEFORE diagnosis, My parents on the other hand are fabulous, they're super educated about CF (much more so than me) and "strong like bull". I'm actually staying with them while my husband is on a loooong deployment to the Persian Gulf for the next 8 months or so. It's actually quite nice though because Aidan and i receive nothing but positivity and loving help while in their care <img src="i/expressions/face-icon-small-smile.gif" border="0">)

Stress & worry number three.....

i'm currently pregnant with baby #2 and have decided to have testing done after birth (i'm prolife and don't see the point in risking baby girl's health with an amnio or other prenatal testing). i'm hoping that all turns out well and that she does not have to endure what her precious big brother has already had to.

Lastly.. the meds. Aidan has tested positive for Pseudomonas. the CF clinic (i love the CF clinics btw, SUCH A BLESSING!!!!!) have him on CIPRO, TOBI (neb.), he takes enzymes, zantac, ADEKs, and albuterol (inhaler + spacer) and i struggle with such guilt and horror having to watch his little body (not even 19 lbs. yet) endure these hardcore meds. i try so hard to be strong but have broken down 3 times regarding the meds. i have always been sort of anti-meds, pro-holisitc so this is very tough and i hope that it's all doing more good than harm to him. i read the Tobi booklet and read of all the side affects and basically flipped out internally, yes the panic set in inside of me and i just cry about it sometimes when i have moments alone...

I would love to hear your imput, if anyone knows about this i'm sure you do and i would truly value anything that you or anyone else on this panel have to say.

God bless everyone on here, it is such a relief to be able to connect with you folks!

Thank you,

Catie
 
A

AidansMom

New member
hi Meghan, i'm mom to Aidan who's now just about 16 months old. i learned that i was a CF carrier while prego with Aidan but told that the chances that my husband was a carrier were so slim to not worry.

Then Aidan was born and actually passed merconium in the womb so docs said probably no CF. Well things just never seemed "right" from the get go. but i was passed off as "an overly anxious new mother". ouch. the stress started there, feeling like i was alone and no one would hear what i had to say. Aidan had very greasy oily stools (like wesson oil, very odd) and very bulky. he had a little cough/wheez until he was 2 or 3 months old. he didn't get "fat" like the doc said he would since i was breast feeding. he seemed absolutely miserable and i was practicing attachment parenting so i was jumping to his every beck and call (which in retrospect, i'm so glad i did because people tried to tell me i was "spoiling him"). his belly would rumble and he'd writhe in pain, it seemed.. i mean just one thing after another and i mentioned all of this to everyone, my family, my inlaws, his doctor(s), and EVERYONE brushed me off and made me feel horrible. i was worried they'd start thinking i had Munchausen syndrome... so i was very careful about going to the doctors office too much and ESPECIALLY the hospital. Again, more stress.. knowing that my son was hurting/suffering and being made to feel awful for noticing these things. * Parents, trust your instincts!!*

Anyway, little Aidan stopped growing at 6 months, length and weight, he just STOPPED. he regressed developmentally also, he stopped any baby babbling or actually talking that he had started doing. He then just sort of seemed a little out if it. i kept telling the doctors, i am a CF carrier, could he have CF, can you please test him.... to no avail. They kept telling me (he had cute chubby cheeks due to protein deficiency) "he doesn't look like he could have CF". Whatever! I look back and i'm like.. what ignorance that was to say something like that to me, again and again!


Finally at 8 months his pediatrician hospitalized him for "failure to thrive" and ran a battery of tests, still refusing to think that it could be CF. Pfff! Then after visiting a pediatric endocrinologist <img src="i/expressions/heart.gif" border="0">that we were referred to.. and explaining that I was a CF carrier, he said he suspected that that's what it could be and ordered a sweat test. hmmm. and yes, sure enough, after 2 more sweat tests (just for verification, with each of them the number was higher) and one genetic test it was confirmed that he did have CF.

Here comes stress and heartache post-dx....

my husband and his family refused to believe the dx. first of all... then when they decided to believe it, it was all about them and poor them.. etc. What about Aidan?!?! i was so upset that thanks to adult self-centeredness, he was being overlooked by much of the family, errrrr!

now, i just hear a lot of "horror stories" from that side of the family, which i have now asked that they please stop.

it's just bananas how things become so complicated and uncomfortable thanks to those well-meaning folks all around you.

Although in denial somewhat initially BEFORE diagnosis, My parents on the other hand are fabulous, they're super educated about CF (much more so than me) and "strong like bull". I'm actually staying with them while my husband is on a loooong deployment to the Persian Gulf for the next 8 months or so. It's actually quite nice though because Aidan and i receive nothing but positivity and loving help while in their care <img src="i/expressions/face-icon-small-smile.gif" border="0">)

Stress & worry number three.....

i'm currently pregnant with baby #2 and have decided to have testing done after birth (i'm prolife and don't see the point in risking baby girl's health with an amnio or other prenatal testing). i'm hoping that all turns out well and that she does not have to endure what her precious big brother has already had to.

Lastly.. the meds. Aidan has tested positive for Pseudomonas. the CF clinic (i love the CF clinics btw, SUCH A BLESSING!!!!!) have him on CIPRO, TOBI (neb.), he takes enzymes, zantac, ADEKs, and albuterol (inhaler + spacer) and i struggle with such guilt and horror having to watch his little body (not even 19 lbs. yet) endure these hardcore meds. i try so hard to be strong but have broken down 3 times regarding the meds. i have always been sort of anti-meds, pro-holisitc so this is very tough and i hope that it's all doing more good than harm to him. i read the Tobi booklet and read of all the side affects and basically flipped out internally, yes the panic set in inside of me and i just cry about it sometimes when i have moments alone...

I would love to hear your imput, if anyone knows about this i'm sure you do and i would truly value anything that you or anyone else on this panel have to say.

God bless everyone on here, it is such a relief to be able to connect with you folks!

Thank you,

Catie
 
T

TamathaLynn

New member
Hi Megan.

I'm Tamatha the mother of 6 month old Logan. He was diagnosed with CF when he was 9 weeks old. My story is a lot like Catie's. All he did was cry nonstop he would only sleep for maybe thirty minutes at a time and that was after he ate.I was functioning on maybe two hours of sleep a night at thirty minute intervals. He was eating six ounces of formula every two hours by the time he was six weeks old,and he would cry wanting more. He had chronic diarrhea, every single day he had approximately six or seven dirty diapers per feeding. I was taking him to the doctor and every time I went they thoght I was exaggerating because he is my first child, so obviously I didn't know what I was talking about. We went through three doctors until I found one who at least attempted to help. He startd changing Logans formula. By the time he was nine weeks old he had been on seven different formulas, cried nonstop, had only gained a pound since he had been born,awful diarrhea. His pediatrician referred him to the university hospital here and they admitted him for failure to thrive. The next day they did the sweat test and was diagnosed. That day was the worst yet best day because I wasn't crazy after all and we found out what was wrong and could do something. He was started on creon 5 and has ben doing wonderfully! So far the only problems he's had is digestion so maybe it will stay that way. I'm still scared silly and really have no idea what to expect or do but I'm learning. Tonight was the first night I found this web site. I've never been here before but I'm glad I found it. I hope I was some help to you. And anyone who reads this and has any advice for me please feel free to give it.
 
T

TamathaLynn

New member
Hi Megan.

I'm Tamatha the mother of 6 month old Logan. He was diagnosed with CF when he was 9 weeks old. My story is a lot like Catie's. All he did was cry nonstop he would only sleep for maybe thirty minutes at a time and that was after he ate.I was functioning on maybe two hours of sleep a night at thirty minute intervals. He was eating six ounces of formula every two hours by the time he was six weeks old,and he would cry wanting more. He had chronic diarrhea, every single day he had approximately six or seven dirty diapers per feeding. I was taking him to the doctor and every time I went they thoght I was exaggerating because he is my first child, so obviously I didn't know what I was talking about. We went through three doctors until I found one who at least attempted to help. He startd changing Logans formula. By the time he was nine weeks old he had been on seven different formulas, cried nonstop, had only gained a pound since he had been born,awful diarrhea. His pediatrician referred him to the university hospital here and they admitted him for failure to thrive. The next day they did the sweat test and was diagnosed. That day was the worst yet best day because I wasn't crazy after all and we found out what was wrong and could do something. He was started on creon 5 and has ben doing wonderfully! So far the only problems he's had is digestion so maybe it will stay that way. I'm still scared silly and really have no idea what to expect or do but I'm learning. Tonight was the first night I found this web site. I've never been here before but I'm glad I found it. I hope I was some help to you. And anyone who reads this and has any advice for me please feel free to give it.
 
You must log in or register to reply here.
Top