When there's a cure.....

J

jmiller

New member
Every once in a while I like to think about all of the CF-related parts of my day/life/thoughts that I am most excited to see end should there be a cure some day. Can we post some of those? It's always fun to dream about <img src="i/expressions/face-icon-small-smile.gif" border="0">

A few of my favorites:

<UL>Less multi-tasking!!! (this morning I did nebs while feeding 4 month old on one side and pumping the other, sorry if that's TMI... but it's kind of impressive too)
More time with family (withOUT the constant hum of a vest, neb, or airway clearance device)
Checking my sputum for blood
Leaving salt trails everywhere after a run
Being identified by my cough</UL>

And now a few things I will miss (there are a few):

<UL>Having a reason to celebrate even the simplest accomplishments
An ever-present reminder that I am not in control of my life!
Doing a neb when I'm not in the mood to talk <img src="i/expressions/face-icon-small-smile.gif" border="0"></UL>
 
J

jmiller

New member
Every once in a while I like to think about all of the CF-related parts of my day/life/thoughts that I am most excited to see end should there be a cure some day. Can we post some of those? It's always fun to dream about <img src="i/expressions/face-icon-small-smile.gif" border="0">

A few of my favorites:

<UL>Less multi-tasking!!! (this morning I did nebs while feeding 4 month old on one side and pumping the other, sorry if that's TMI... but it's kind of impressive too)
More time with family (withOUT the constant hum of a vest, neb, or airway clearance device)
Checking my sputum for blood
Leaving salt trails everywhere after a run
Being identified by my cough</UL>

And now a few things I will miss (there are a few):

<UL>Having a reason to celebrate even the simplest accomplishments
An ever-present reminder that I am not in control of my life!
Doing a neb when I'm not in the mood to talk <img src="i/expressions/face-icon-small-smile.gif" border="0"></UL>
 
J

jmiller

New member
Every once in a while I like to think about all of the CF-related parts of my day/life/thoughts that I am most excited to see end should there be a cure some day. Can we post some of those? It's always fun to dream about <img src="i/expressions/face-icon-small-smile.gif" border="0">
<br />
<br />A few of my favorites:
<br />
<br /><UL>Less multi-tasking!!! (this morning I did nebs while feeding 4 month old on one side and pumping the other, sorry if that's TMI... but it's kind of impressive too)
<br />More time with family (withOUT the constant hum of a vest, neb, or airway clearance device)
<br />Checking my sputum for blood
<br />Leaving salt trails everywhere after a run
<br />Being identified by my cough</UL>
<br />
<br />And now a few things I will miss (there are a few):
<br />
<br /><UL>Having a reason to celebrate even the simplest accomplishments
<br />An ever-present reminder that I am not in control of my life!
<br />Doing a neb when I'm not in the mood to talk <img src="i/expressions/face-icon-small-smile.gif" border="0"></UL>
 
N

nmw615

New member
A few things I won't miss:

Having to wake up half an hour earlier, just to get a vest treatment in
The long task every Sunday of filling up my pill organizer for the week
Getting sideways looks every time I have a coughing fit
If I don't take enough enzymes, the horrible pain that knocks me out for a while

Some things I will miss:

The hour of control over the TV I have when I do my vest
Being able to eat almost anything and not really worry about gaining weight
Using the vest as a way to ignore people when I don't feel like talking
Being able to enjoy the little things, and feeling really good about myself whenever I
beat my previous best PFTs
 
N

nmw615

New member
A few things I won't miss:

Having to wake up half an hour earlier, just to get a vest treatment in
The long task every Sunday of filling up my pill organizer for the week
Getting sideways looks every time I have a coughing fit
If I don't take enough enzymes, the horrible pain that knocks me out for a while

Some things I will miss:

The hour of control over the TV I have when I do my vest
Being able to eat almost anything and not really worry about gaining weight
Using the vest as a way to ignore people when I don't feel like talking
Being able to enjoy the little things, and feeling really good about myself whenever I
beat my previous best PFTs
 
N

nmw615

New member
A few things I won't miss:
<br />
<br /> Having to wake up half an hour earlier, just to get a vest treatment in
<br /> The long task every Sunday of filling up my pill organizer for the week
<br /> Getting sideways looks every time I have a coughing fit
<br /> If I don't take enough enzymes, the horrible pain that knocks me out for a while
<br />
<br />Some things I will miss:
<br />
<br /> The hour of control over the TV I have when I do my vest
<br /> Being able to eat almost anything and not really worry about gaining weight
<br /> Using the vest as a way to ignore people when I don't feel like talking
<br /> Being able to enjoy the little things, and feeling really good about myself whenever I
<br /> beat my previous best PFTs
 
K

Kristen

New member
I won't miss:

All the time spent doing treatments, cleaning nebs, going to the pharmacy, dealing with insurance, going to the doctor, etc. I dream of the day I can get up in the morning and just grab a cup of coffee and play with my daughter!

Having to worry so much about catching every little cold.

Not being able to breath of out both nostrils.

Spending a ton of money on medical bills.

I will miss:
The excuse to surf the internet while doing my treatments.
That's about it.
 
K

Kristen

New member
I won't miss:

All the time spent doing treatments, cleaning nebs, going to the pharmacy, dealing with insurance, going to the doctor, etc. I dream of the day I can get up in the morning and just grab a cup of coffee and play with my daughter!

Having to worry so much about catching every little cold.

Not being able to breath of out both nostrils.

Spending a ton of money on medical bills.

I will miss:
The excuse to surf the internet while doing my treatments.
That's about it.
 
K

Kristen

New member
I won't miss:
<br />
<br />All the time spent doing treatments, cleaning nebs, going to the pharmacy, dealing with insurance, going to the doctor, etc. I dream of the day I can get up in the morning and just grab a cup of coffee and play with my daughter!
<br />
<br />Having to worry so much about catching every little cold.
<br />
<br />Not being able to breath of out both nostrils.
<br />
<br />Spending a ton of money on medical bills.
<br />
<br />I will miss:
<br />The excuse to surf the internet while doing my treatments.
<br />That's about it.
 
I

Iamqueenofeverything

New member
I will like to not worry about leaving an event to worry about my treatments BUT i will miss using "I have to do my treatments" as an excuse to leave early if i get bored...

I will miss my handicap parking...


I wont miss being tied or sick all the time.


I am looking forward to running without coughing and staying up all night without it having an effect on me..

i will like to not being id as the sick one.. or have ppl be afraid of me because i have a disease....
 
I

Iamqueenofeverything

New member
I will like to not worry about leaving an event to worry about my treatments BUT i will miss using "I have to do my treatments" as an excuse to leave early if i get bored...

I will miss my handicap parking...


I wont miss being tied or sick all the time.


I am looking forward to running without coughing and staying up all night without it having an effect on me..

i will like to not being id as the sick one.. or have ppl be afraid of me because i have a disease....
 
I

Iamqueenofeverything

New member
I will like to not worry about leaving an event to worry about my treatments BUT i will miss using "I have to do my treatments" as an excuse to leave early if i get bored...
<br />
<br />I will miss my handicap parking...
<br />
<br />
<br />I wont miss being tied or sick all the time.
<br />
<br />
<br />I am looking forward to running without coughing and staying up all night without it having an effect on me..
<br />
<br />i will like to not being id as the sick one.. or have ppl be afraid of me because i have a disease....
 
C

Crayonlove92

New member
I won't miss:
Washing nebs
Worrying about remembering pills
All the bathroom visits
The needles
Raw skin from tape
Coughing fits
BLOATING
The smoking comments I get on my coughing



I'll miss:
My hospital staff (They're like my second family)
Being able to relax often when i'm sick
Eating what I want
 
C

Crayonlove92

New member
I won't miss:
Washing nebs
Worrying about remembering pills
All the bathroom visits
The needles
Raw skin from tape
Coughing fits
BLOATING
The smoking comments I get on my coughing



I'll miss:
My hospital staff (They're like my second family)
Being able to relax often when i'm sick
Eating what I want
 
C

Crayonlove92

New member
I won't miss:
<br />Washing nebs
<br />Worrying about remembering pills
<br />All the bathroom visits
<br />The needles
<br />Raw skin from tape
<br />Coughing fits
<br />BLOATING
<br />The smoking comments I get on my coughing
<br />
<br />
<br />
<br />I'll miss:
<br />My hospital staff (They're like my second family)
<br />Being able to relax often when i'm sick
<br />Eating what I want
 
J

justdance

New member
I dream of the day (and believe its comng soon) when...

I sleep all night, wake up, go all day (laughing lots) and fall into bed again the next night without a single productive cough

I lose that dark cloud of worry that likes to rise up in me every so often- the one that makes me question "what if this/that happens?"

Having children can be a decision made on a whim- no gut-wrenching decisions about the potential outcomes

I can spend more brain power/ time thinking about others than worrying about myself

The panic attack I get prior to doing a PFT...I have an overwhelming fear of seeing low numbers up on the screen


And I guess I would kind of miss...

Eating buckets of peanut butter and never ending up on some documentary called "ten ton woman"
Understanding more than my peers how precious life is
Having a personal vested interest in science

Oh and salt! I love sea salt with everything!
 
J

justdance

New member
I dream of the day (and believe its comng soon) when...

I sleep all night, wake up, go all day (laughing lots) and fall into bed again the next night without a single productive cough

I lose that dark cloud of worry that likes to rise up in me every so often- the one that makes me question "what if this/that happens?"

Having children can be a decision made on a whim- no gut-wrenching decisions about the potential outcomes

I can spend more brain power/ time thinking about others than worrying about myself

The panic attack I get prior to doing a PFT...I have an overwhelming fear of seeing low numbers up on the screen


And I guess I would kind of miss...

Eating buckets of peanut butter and never ending up on some documentary called "ten ton woman"
Understanding more than my peers how precious life is
Having a personal vested interest in science

Oh and salt! I love sea salt with everything!
 
J

justdance

New member
I dream of the day (and believe its comng soon) when...
<br />
<br />I sleep all night, wake up, go all day (laughing lots) and fall into bed again the next night without a single productive cough
<br />
<br />I lose that dark cloud of worry that likes to rise up in me every so often- the one that makes me question "what if this/that happens?"
<br />
<br />Having children can be a decision made on a whim- no gut-wrenching decisions about the potential outcomes
<br />
<br />I can spend more brain power/ time thinking about others than worrying about myself
<br />
<br />The panic attack I get prior to doing a PFT...I have an overwhelming fear of seeing low numbers up on the screen
<br />
<br />
<br />And I guess I would kind of miss...
<br />
<br />Eating buckets of peanut butter and never ending up on some documentary called "ten ton woman"
<br />Understanding more than my peers how precious life is
<br />Having a personal vested interest in science
<br />
<br />Oh and salt! I love sea salt with everything!
 
J

jmiller

New member
I SOOO agree on the laughing - I want to silent laugh and not have it end in a cough! can't wait for that. And I look forward to how much more "together" the other parts of my life can potentially be. I feel like I use so much of my discipline on maintaining the CF routine (treatments, sanitizing nebs, etc etc) that I am just all "routined-out" and don't have the energy to keep the house in great order... my junk drawers from overflowing, etc <img src="i/expressions/face-icon-small-smile.gif" border="0">

And I LOVE salt too... but I can sacrifice a little salt <img src="i/expressions/face-icon-small-smile.gif" border="0"> maybe we won't crave it as much post-cure <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
J

jmiller

New member
I SOOO agree on the laughing - I want to silent laugh and not have it end in a cough! can't wait for that. And I look forward to how much more "together" the other parts of my life can potentially be. I feel like I use so much of my discipline on maintaining the CF routine (treatments, sanitizing nebs, etc etc) that I am just all "routined-out" and don't have the energy to keep the house in great order... my junk drawers from overflowing, etc <img src="i/expressions/face-icon-small-smile.gif" border="0">

And I LOVE salt too... but I can sacrifice a little salt <img src="i/expressions/face-icon-small-smile.gif" border="0"> maybe we won't crave it as much post-cure <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
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