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iel Q. Bolton

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No on ever believes that I have a chronic illness either, like many

people with CF, our illness is inside.  And that is a blessing.  Make

it work for him in the future.  But don't let it fool you into

listening to friends and family about how you should treat him.  He's

still a sick little boy, and CF is like the devil on his body.

I am so flattered by your words.  It makes me so happy to know that

someone is listening, since right now I know that I am right about

certain things. What I am living through now cannot be denied or

questioned, and I have learned from it like you would not believe. 

There are some things that I know now for sure, that I did not know a

month ago, and all of a sudden my life has changed and I can truly say

that I understand CF.  I know what it is that I have inside me.   I

also know what it takes to stay afloat.  And it's more WW2 than Iraq,

meaning it's harder, larger and faster with more damage than I could

have ever thought.  It grabs hold without easily recognizable signs

(though there are sides that we need to learn, like we learned to

recognize hatred in men like Hitler)  and that the battle and the

aftermath are on in the same.  I still cannot believe that this

happened to me.  That it was me that could not breathe a few days ago,

that my mom and dad had to watch their 24 year old daughter suffocate. 

This disease does not care about me, it needs to survive in my lungs

and body like I need it not to be there.  So we fight.  Right now I am

winning, and no matter what the outcome is for the next couple of

years, I have won by admitting to myself that it could happen to me,

and that it did, and that that does not make me less of a whole person,

it just makes me human.  God made sure that I learned that this time,

that my suffering is not mine alone.

I'm going to go back to some sleeping.  I feel good, but woke up to

feel stuff out.  I am still a little scared to sleep.  The last time

that I could not breathe was while sleeping.  I woke up being drained

of breath.  But I am getting my confidence back - confidence that my

body will not fail me.

Thanks for writing,  Keep in touch and ask me anything you want about

this.  The truth is that I am pretty interested in sharing the past few

months with everyone, slowly.  They have been defining when it comes to

how I understand and treat CF.  It gives me tremendous satisfaction

that someone is reading what I write - though these area just my

thoughts and opinions, I know that they are worth something.

Keep me updated on little Jack.  I am sure that he's a looker, have you

ever seen an ugly CF kid.  No way.  God takes care of our beauty from

the inside out.

Natalia

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