"I have Cystic Fibrosis"

JORDYSMOM

New member
Yup, those words came out of Jordan's mouth this morning. I'm hopeful and heartbroken all at the same time. Those of you who know me/us, will understand how shocking it was for me to hear Jordan admit that he has CF. The fact that he admitted it to someone outside of our family is unbelievable. For those of you who don't know, he wasn't dx until he was 15 years old, and has basically been in denial for the past 6 years. He only does the bare minimum of treatments. It gives me hope that he may be on his way to accepting it. Could he even get to a point that he will be more proactive with his treatments? A mom can hope.

It also broke my heart, because of the context of the conversation we were having. He was in my office with his Field Supervisor (Jordan works for me) talking about his Simple IRA & His Roth IRA. Saying he was thinking of investing in mutual funds. The FS told him he'd be surprised at how much it would all add up to by the time he reached retirement age. Jordan said "Yeah, if I make it that long." <img src="i/expressions/face-icon-small-sad.gif" border="0"> Rip my heart out! The FS laughed it off - thinking it was just a joke, and told Jordan not to party too much and he'd live longer. Jordan laughed and left to go to work. After Jordan left, the FS asked "what is CF?" I gave him the nut shell version. He was amazed. He couldn't believe that Jordan "looks so healthy, and works so hard" yet has a life-shortening, chronic illness. I explained that Jordan doesn't want to be treated any differently because of it, and he must feel pretty comfortable with him, because he wouldn't have brought it up otherwise. The FS is a very kind, fair man, and he will not share this with anyone else, and he will not treat Jordan any differently. He does, however have a whole new respect for Jordan & how hard he works. He said he thought he just pushed so hard because he was the boss's son. lol

I'm not sure of my reason for sharing this story. It just hit me hard today. Lately Jordan's been struggling with breathing, because our unseasonably warm weather has triggered weeds, trees & grass to pollenate, so his allergies have been horrible. There are multiple viruses going around at work, and he's fighting a bit of a head cold too. He told me yesterday that "something isn't right", because his cough is "different". I've worried for a long time that it would take a major exaserbation to get Jordan to take notice of his CF, and treat it proactively. I guess I'm just fighting such mixed emotions today. Thanks for listening.

Stacey
 

JORDYSMOM

New member
Yup, those words came out of Jordan's mouth this morning. I'm hopeful and heartbroken all at the same time. Those of you who know me/us, will understand how shocking it was for me to hear Jordan admit that he has CF. The fact that he admitted it to someone outside of our family is unbelievable. For those of you who don't know, he wasn't dx until he was 15 years old, and has basically been in denial for the past 6 years. He only does the bare minimum of treatments. It gives me hope that he may be on his way to accepting it. Could he even get to a point that he will be more proactive with his treatments? A mom can hope.

It also broke my heart, because of the context of the conversation we were having. He was in my office with his Field Supervisor (Jordan works for me) talking about his Simple IRA & His Roth IRA. Saying he was thinking of investing in mutual funds. The FS told him he'd be surprised at how much it would all add up to by the time he reached retirement age. Jordan said "Yeah, if I make it that long." <img src="i/expressions/face-icon-small-sad.gif" border="0"> Rip my heart out! The FS laughed it off - thinking it was just a joke, and told Jordan not to party too much and he'd live longer. Jordan laughed and left to go to work. After Jordan left, the FS asked "what is CF?" I gave him the nut shell version. He was amazed. He couldn't believe that Jordan "looks so healthy, and works so hard" yet has a life-shortening, chronic illness. I explained that Jordan doesn't want to be treated any differently because of it, and he must feel pretty comfortable with him, because he wouldn't have brought it up otherwise. The FS is a very kind, fair man, and he will not share this with anyone else, and he will not treat Jordan any differently. He does, however have a whole new respect for Jordan & how hard he works. He said he thought he just pushed so hard because he was the boss's son. lol

I'm not sure of my reason for sharing this story. It just hit me hard today. Lately Jordan's been struggling with breathing, because our unseasonably warm weather has triggered weeds, trees & grass to pollenate, so his allergies have been horrible. There are multiple viruses going around at work, and he's fighting a bit of a head cold too. He told me yesterday that "something isn't right", because his cough is "different". I've worried for a long time that it would take a major exaserbation to get Jordan to take notice of his CF, and treat it proactively. I guess I'm just fighting such mixed emotions today. Thanks for listening.

Stacey
 

Ratatosk

Administrator
Staff member
Breaks my heart <img src="i/expressions/face-icon-small-sad.gif" border="0"> He's a good kid! And you're a great mom!
 

Ratatosk

Administrator
Staff member
Breaks my heart <img src="i/expressions/face-icon-small-sad.gif" border="0"> He's a good kid! And you're a great mom!
 
T

TonyaH

Guest
I know they are tough words to hear, but I'm glad you are starting to see the lightbulb flicker! He knows you are always there to support him!
 
T

TonyaH

Guest
I know they are tough words to hear, but I'm glad you are starting to see the lightbulb flicker! He knows you are always there to support him!
 

beleache

New member
Hey Stacey,
A Blessing in disguise, thats what it sounds like to me.. While it is sad, this is what you've been praying for. And I hope & pray that Jordan will start to be more compliant..
When things start to change, you know it for sure & sometimes that is our sign to change things up.
Thoughts, Prayers & {{{hugs}}} <3 joni
 

beleache

New member
Hey Stacey,
A Blessing in disguise, thats what it sounds like to me.. While it is sad, this is what you've been praying for. And I hope & pray that Jordan will start to be more compliant..
When things start to change, you know it for sure & sometimes that is our sign to change things up.
Thoughts, Prayers & {{{hugs}}} <3 joni
 

kmhbeauty

New member
Hello, I too was dx at 15 and ignored the disease for a long time. I refused to do my medication too. I wanted and still want to just live a normal life and not have anyone see me as different or weak. I am 26 now and really still dont take medicine. I do the things that I believe help me with my diease like eating healthy. I take fish oil daily. I have certain ways of getting rid of a cold, natural ways! I am a huge believer that we know our body best because we have the disease. I sure he will eventually take medicine and so will I. I feel amazing when I feel normal and live a normal life. Hope this helps.
 

kmhbeauty

New member
Hello, I too was dx at 15 and ignored the disease for a long time. I refused to do my medication too. I wanted and still want to just live a normal life and not have anyone see me as different or weak. I am 26 now and really still dont take medicine. I do the things that I believe help me with my diease like eating healthy. I take fish oil daily. I have certain ways of getting rid of a cold, natural ways! I am a huge believer that we know our body best because we have the disease. I sure he will eventually take medicine and so will I. I feel amazing when I feel normal and live a normal life. Hope this helps.
 

JennyCoulon

New member
My heart goes out to you as a mother and hearing your son talk about his life being shorten by CF. I would really hope that it doesn't take a hospitalization for him to realize that no matter how much he wants to deny or hate it the fact of the matter is he has CF. There is nothing that we can do as parents except be there for them when they need to talk, push them to do their treatments and take care of themselves. There are so many medical advances now that is allowing people to live much longer, healthier lives even while battling this disease. At some oint he will have to accept it and I would just hope it is sooner rather than later. Good luck.
 

JennyCoulon

New member
My heart goes out to you as a mother and hearing your son talk about his life being shorten by CF. I would really hope that it doesn't take a hospitalization for him to realize that no matter how much he wants to deny or hate it the fact of the matter is he has CF. There is nothing that we can do as parents except be there for them when they need to talk, push them to do their treatments and take care of themselves. There are so many medical advances now that is allowing people to live much longer, healthier lives even while battling this disease. At some oint he will have to accept it and I would just hope it is sooner rather than later. Good luck.
 
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