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Re: Rant n Rave

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Rant n' Rave--I think that was a very good rant and rave and I feel the same

way--not dead yet but having major complications, and I do mean major despite

my amasing height and astonishing weight and pink cheeks (facial), or appearan

ce of being as we say in Spanish of being " rosada y gordita,; " I am just plain

rosa (as my surname, maiden one) implies, and definitly " gorda, " which means in

Spanish " chubby! Now I was not chubby until I had seven joint eplacement sur

geries and major osteoarthritis set in, but I am not the 120 lbs. I was before

then either; my previous all time high was 134 at 5' 10.5 inches tall! The joys

of aging, which as Kathy , wcf, at 59, says rightly, are a privilege

denied to many. I am 66 and try hard not to rant and rave too much,

even about my youngest who is 38--I think--wcf, and doing very well. I try to

be thankful, but it is hard and the s Hopkins classification of cystic

fibrosis as being " classic, " " non-classic, " or " cf-related! " does not really

help. I have always assumed that the difference, regardless of mutations was

in gene penetration, but I had best shut up for now, anyway.

I love to you all,

n Rojas, who appreciated the previous Rant n Rave!

> I have seen references made a couple of times now stating that

> doctors have told parents that their child has a " mild "

> or " moderate " case of CF. How can this be possible? Thats almost

> like saying you are only kind of pregnant. I understand that CF

> effects everyone differently and to different extremes. However, I

> find it hard to beleive that there are different levels. How can you

> have cf " mildly " ? You may not have extreme symptoms, but would'nt

> you think that there is a difference between symptoms and the actual

> disease. This bugs me. I would hate to think the doctors are saying

> this to help ease the pain for the parents/child which I think is

> misleading. lived with this disease for 9 years with no

> complications, no severe or extreme symptoms, so does this mean that

> she went from a " mild case " to a more " moderate case " , whats next?

> Will she graduate to " well its not that bad yet " case which will

> eventually lead to " theres no stopping it now " case? I just feel

> like if a doctor tells someone that their case is mild, then he is

> telling them that #1, it won't get any worse and #2, there is a

> chance that it will get better. Its just crazy.

>

> I could go on for another 2 hours, but will spare you all. Must be

> pms. Hmmm, no wonder my husband went out of town to go fishing for

> the weekend. So now you all get to listen to me rant and rave :)

>

> Thanks!

> e

>

>

>

> -------------------------------------------

> The opinions and information exchanged on this list should IN NO WAY

> be construed as medical advice.

>

> PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS.

>

> ------------------------------------

>

>

>

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e, thank you, and given the week I have had I had

thought that I was just an old grouch--permanently, all of

a sudden!

Love and appreciation,

n, the grinch

Re: Rant n Rave

> n,

> I absolutely love your attitude and you are a real inspiration to

> me, if not to all of us here!

>

>

> e

>

>

>

> -------------------------------------------

> The opinions and information exchanged on this list should IN NO WAY

> be construed as medical advice.

>

> PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR

TREATMENTS.

>

> ------------------------------------

>

>

>

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Yeap, that is just a fallacy, nothing more.

To me it is as mild as the bugs that the patient will culture.

> I have seen references made a couple of times now stating that

> doctors have told parents that their child has a " mild "

> or " moderate " case of CF. How can this be possible? Thats almost

> like saying you are only kind of pregnant. I understand that CF

> effects everyone differently and to different extremes. However, I

> find it hard to beleive that there are different levels. How can

you

> have cf " mildly " ? You may not have extreme symptoms, but would'nt

> you think that there is a difference between symptoms and the

actual

> disease. This bugs me. I would hate to think the doctors are saying

> this to help ease the pain for the parents/child which I think is

> misleading. lived with this disease for 9 years with no

> complications, no severe or extreme symptoms, so does this mean

that

> she went from a " mild case " to a more " moderate case " , whats next?

> Will she graduate to " well its not that bad yet " case which will

> eventually lead to " theres no stopping it now " case? I just feel

> like if a doctor tells someone that their case is mild, then he is

> telling them that #1, it won't get any worse and #2, there is a

> chance that it will get better. Its just crazy.

>

> I could go on for another 2 hours, but will spare you all. Must be

> pms. Hmmm, no wonder my husband went out of town to go fishing for

> the weekend. So now you all get to listen to me rant and rave :)

>

> Thanks!

> e

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e,

When Eilish was dx we were praying that they would tell us she had it

mildly or slightly. All the specialist said to us (as we asked numerous

hoping for the answer we wanted) was that there is no defining mild,

moderate etc. As some kids are sicker when younger then go through

years pretty well, and others sail though until teens and then wham! I

think it might be the 'symptoms' at the time they may be describing but

that can change from day to day.

(Australia)

Rant n Rave

I have seen references made a couple of times now stating that

doctors have told parents that their child has a " mild "

or " moderate " case of CF. How can this be possible? Thats almost

like saying you are only kind of pregnant. I understand that CF

effects everyone differently and to different extremes. However, I

find it hard to beleive that there are different levels. How can you

have cf " mildly " ? You may not have extreme symptoms, but would'nt

you think that there is a difference between symptoms and the actual

disease. This bugs me. I would hate to think the doctors are saying

this to help ease the pain for the parents/child which I think is

misleading. lived with this disease for 9 years with no

complications, no severe or extreme symptoms, so does this mean that

she went from a " mild case " to a more " moderate case " , whats next?

Will she graduate to " well its not that bad yet " case which will

eventually lead to " theres no stopping it now " case? I just feel

like if a doctor tells someone that their case is mild, then he is

telling them that #1, it won't get any worse and #2, there is a

chance that it will get better. Its just crazy.

I could go on for another 2 hours, but will spare you all. Must be

pms. Hmmm, no wonder my husband went out of town to go fishing for

the weekend. So now you all get to listen to me rant and rave :)

Thanks!

e

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> I have seen references made a couple of times now stating that

> doctors have told parents that their child has a " mild "

> or " moderate " case of CF. How can this be possible? Thats almost

> like saying you are only kind of pregnant.

Thank you for your post e because this is one of my pet

peeves as well. I am thankful my son is relatively symptomless at the

time being but that does not mean it will last forever. It pisses me

off that friends and doctors minimize the impact of the disease by

saying he must have a " mild " form. While the stats are getting better

every year for longevity the fact of the matter is many of our kids

are not going to see 40. It's a dumb thing to say and I take every

chance to nicely reeducate anyone who says it to me.

jan

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