Misc chit-chat

[Guest guest]

From (CVID)

Hi all,

First of all, I need to say a huge thank you to Dale for dinner and the

socializing last week. I had such a great time meeting your family.

For the group, they are exactly as you might expect... generous, kind,

down-to-earth, great parents, etc. I really enjoyed meeting everyone.

Katy is absolutely beautiful... I hope someday she allows Dale to put a

picture of her on the " pumpkins " page, because she's a sight to behold.

I even saw her the day after a horrible migraine, and she was still

bubbly and talkative. Dale, good luck with the last minute details, and

please tell Katy I hope she breaks a leg. I will be coming to the

second weekend's performance, so perhaps I'll hear how the first weekend

goes before I see the real thing. Is the costume finalized yet? How

are the sets? And most importantly, is Katy just bursting with

excitement? I hope so!! I should be free on Tuesday, and I'd love to

go with you guys. But guess what? I can drive now! When my aunt took

me to Monterey, we didn't expect I'd have to drive, but I was allowed to

on the second day we were there. So she drove the entire time and my

name wasn't even on the rental car. But on the last morning, she woke up

with food poisoning (or maybe stomach flu, but I never got it, if so...

phew!), and she couldn't drive, so I drove us back (after haggling with

Budget to get me on the rental agreement). Freedom at last! Because I

was so excited, my parents offered to pay for a rental car for the last

two weeks I'm here, so that I could make sure to see and do everything I

wanted to. So I can even meet you at the mall. Is it near McCarthy

Ranch? I was there this morning and saw something in the distance that

looked mall-like. I know I'm working on Thursday, and likely on another

morning that week, but I'll keep Tuesday free. I'll give you a call on

Monday, if that's okay with you - then the weekend's excitement will be

over, and perhaps you'll have a moment to breathe again.

Just a few other responses...

Becky - I am so sorry to hear that the sweat test didn't get enough

sweat. That's just disgraceful. I had numerous sweat tests before I

was diagnosed with CVID, and I don't care what anyone says, they hurt if

not done right. I was not a happy camper any time - I'd sit there

counting down the minutes until they could take the electrodes off. But

my friend with CF says the hospital must have had an antiquated machine,

because hers at Childrens in DC never hurt her (and I generally have a

higher pain tolerance for such things than she does). I hope the next

one goes better... maybe some place that specializes in kids and CF

would be more helpful the next time?

Autumn - I am still thinking of you and the boys. I hope Cleveland goes

well. I have cards for both boys, and will send them off as soon as I

find a mailbox.

Helen - I am still praying for you. Good for you for getting another

doctor. I won't defend her, because there's a difference between being

merely distracted by other things, and completely forgetting someone in

your practice who has cancer. I hope you get a more responsive doc and

more answers soon. Glad Matt overcame the sore throat with IVIG only!

- Hope the move continues to go well. I know what you mean about

the skin over the port, but hopefully they set it deep enough to avoid

it breaking through. I've had mine for almost 3 years, and I've been a

very normal weight for some of that, overweight from steroids for a

brief period, and 25 pounds underweight from a virus for a few months of

that, and my port has never changed, in terms of where it sits under my

skin. I always still use the same length needle. That may not be true

for a growing child, and as learns to do things like crawl, he

will probably build his little pectoral muscles, and that should help

protect the port, too. You can feel my port through my skin easily, and

even through my shirt - you can trace the entire outline of the " well "

portion - but I've never had any problems with skin breakdown, and I've

gone months at a time accessed, changing dressings every other day to

once a week during that time. I'm sure 's skin is more sensitive

than mine - I've seen many preemies' skin after just regular IVs - but

you said they worked to get it in deep, so hopefully it will stand up to

the test. My port is a blessing to me - I couldn't function without it

- so I hope you will have the same good feelings about it once

everything settles into place. Also, don't worry if it's tender for a

while. It took me about 4 or 5 months before it could be accessed or

even touched, really, without me catching my breath in pain. That will

probably help protect it, too, as the tissue grows in to hold it in

place better - kind of built-in Pavlovian conditioning to not mess with

the port while the area is healing! Good luck!

Annette - Good to hear you made it to the IDF meeting. Sounds like

they're kind of doing the same basic schpiel around the country at the

different meetings. I am really glad you made it through your trip

without anything terribly bad happening. You guys deserved a break!!!

I hope Alyssa feels better soon!

- Hope also feels better soon! Yuck - double infection...

Ursula - Do you think Ty will donate the bears? Or are you going with

the bears Annette suggested? If you have to do it by private donation,

let me know... I know some people who'd be happy to make contributions

so the kids could all get the same bear.

Kirstie - What a nasty experience with the doc. I do agree that he was

unneccessarily rude to you both, but on some level, I agree with what

Ursula said. Ackkk - I can see both sides here, and it's complicated!

Isn't Stef about 13 or 14? I know it's exhausting to talk to doctors,

especially when it doesn't seem like it does much good, but I do know

that many docs will just jump to conclusions when a teenager won't talk

to them. Unfortunately, it's reality - not fair, but reality. Even if

Stef could write down how she feels and take it into the doctor's

office, maybe that would help. I do think that once a doctor has done

something to violate my trust - and I don't know if that had already

happened - I have no desire to talk to them anymore. In some cases,

it's safe to say " I'm sorry, but I feel like our working relationship is

already damaged, and I really don't feel like talking to you, so you're

going to have to find someone else for me to talk to. " In other cases

(if that's the only doc around, or if all the other docs are actually

worse, or whatever), I've just had to suck it up and deal with that

doctor, whether I wanted to or not, simply because it was in my best

interest to get better. I've kicked a lot of doctors out of hospital

rooms, or refused to talk to some (and in fact, a second year medical

student heard that I once pulled the hospital covers up over my head and

refused to talk to someone who had SERIOUSLY violated my trust and was

truly incompetent, and he looked at me and said, " if I were the doctor,

I'd be prepping to send you to the loony bin. " I was livid with the med

student, and I spent 15 minutes telling him exactly why that was an

inappropriate response!!! I try to educate my classmates/schoolmates

early - before they get jaded - but even before they see their first

patient, they're often jaded). So the point of that is that it's hard

to know sometimes when to stick up for yourself (or your child) and when

to go with the flow just to get things done. But learning to tell the

difference is really important in being able to care for one's own

health as you get older, and Stef may just need some help expressing

things in a manner or situation that is more comfortable to her. At

this point, I wouldn't try to convince her to talk to someone who's

already violated her trust, but with the new person, I think I'd explain

to her why a doctor might think this or that about her if she doesn't

talk or write it out, so it would be best for her to say SOMETHING -

even if it's, " I'm so tired, I barely have the energy to sit here, not

to mention go through the whole story AGAIN. " Hopefully that will clue

them into how tired and sick she is, too. Sorry for going back and

forth - as I said, I can see both sides, and that's a difficult thing to

juggle. Good luck, and please let Stef know I'm thinking of her and

hoping she GETS WELL SOON!!! PS: Do they have her on anything for the

Chlamydia? Maybe she needs a longer course of the Erythro or a similar

drug (Biaxin, etc).

Donna and Walt - we miss you and think of you often. I know it's hard

to keep up with all the mail, but if you see this, please let someone

know how you're doing... we care about you guys!

Sorry I missed people - inevitable in a group this size. But did want

to say hi and get over my guilt of not writing for a while!

Take care, all... and hugs to the kids!

[Guest guest]

Dear Kirstie,

Just wanted you to know that I too have asthma. I have been on a lot of

prednisone this summer. I almost went to the hospital several times and I

was taking lots and lots of prednisone. Don't listen to that goof ball.

ASTHMA is such a strange thing. I have watched the boys have terrible asthma

attacks that lasted about 5 hours and the docs just dismissed them from the

hospital while they were still in the middle of them. Peak flows were OK 95%

on room air, so they thought all was well. If you don't have asthma you have

no idea how bad you can feel and the test don't show everything. I am glad

you are changing Docs. Please tell your daughter not to listen to this man.

Prednisone is a wonderful drug and I don't know what I would do without it.

Sue W Mom to Jake (10) and (6)

[Guest guest]

From Kirstie: Mum to Stef, Cam(CVID), Isaac and (CVID)

and Ursula,

Don't worry, I agree that Stef should have been more forthcoming with

the doctor, but the questions he was asking her were pretty difficult

for anyone to ask things like " what is really going on here? " Basically

he told her that she was lying, said it was impossible for her still to

be having breathing difficulties on the prednisone - I'm sorry, but I

believe it is pretty hard to fake rapid breathing in your sleep.

One thing he told her, which I believe is a pretty stupid thing to say

to a 14 year old, was - and I quote - " If you keep taking prednisone you

are going to end up weighing 80 kilos, be covered in acne and your bones

are going to fall apart " - now this is a kid who has had to take

prednisone for bee stings, and who has definitely needed it this year,

as a result of that comment, she has vowed never to take it again. I

just hope she never needs it.

Stef is shy - but I am not - and I was gobsmacked by the rudeness of

this man, and did not know what to say. I have since found out that he

told a friend of mine that all her symptoms were stress related - she

sought a second opinion and it turned out that she had a pituitary gland

tumour.

He basically told Stef that her chest was fine, without listening to it.

Our GP had sent her because she heard creps, and decreased air movement

the day before.

I wonder if he is covering his back - he is the one who put her on the

prednisone treatment, along with other asthma medication - when it looks

like she actually has psitticossis (the infection appears to be

chlamydia psittici, probably caught from her cockatiel, which was

sharing her bedroom at the time she got sick.

He wants her to have another positive test for that before he puts her

on abx for it - and that test takes 4 weeks to come back, so if that is

the cause, I guess she just stays sick in the meantime.

While, I agree that she should have said more, when basically the first

thing you are told is that you are lying about the way you feel, I think

most 14 year olds would clam up!

Better go, time to take Isaac to his rugby game, and its really cold

outside this morning!!

Talk to you later.

Kirstie

wrote:

>

>

>

> >From (CVID)

>

> Hi all,

>

> First of all, I need to say a huge thank you to Dale for dinner and the

> socializing last week. I had such a great time meeting your family.

> For the group, they are exactly as you might expect... generous, kind,

> down-to-earth, great parents, etc. I really enjoyed meeting everyone.

> Katy is absolutely beautiful... I hope someday she allows Dale to put a

> picture of her on the " pumpkins " page, because she's a sight to behold.

> I even saw her the day after a horrible migraine, and she was still

> bubbly and talkative. Dale, good luck with the last minute details, and

> please tell Katy I hope she breaks a leg. I will be coming to the

> second weekend's performance, so perhaps I'll hear how the first weekend

> goes before I see the real thing. Is the costume finalized yet? How

> are the sets? And most importantly, is Katy just bursting with

> excitement? I hope so!! I should be free on Tuesday, and I'd love to

> go with you guys. But guess what? I can drive now! When my aunt took

> me to Monterey, we didn't expect I'd have to drive, but I was allowed to

> on the second day we were there. So she drove the entire time and my

> name wasn't even on the rental car. But on the last morning, she woke up

> with food poisoning (or maybe stomach flu, but I never got it, if so...

> phew!), and she couldn't drive, so I drove us back (after haggling with

> Budget to get me on the rental agreement). Freedom at last! Because I

> was so excited, my parents offered to pay for a rental car for the last

> two weeks I'm here, so that I could make sure to see and do everything I

> wanted to. So I can even meet you at the mall. Is it near McCarthy

> Ranch? I was there this morning and saw something in the distance that

> looked mall-like. I know I'm working on Thursday, and likely on another

> morning that week, but I'll keep Tuesday free. I'll give you a call on

> Monday, if that's okay with you - then the weekend's excitement will be

> over, and perhaps you'll have a moment to breathe again.

>

> Just a few other responses...

>

> Becky - I am so sorry to hear that the sweat test didn't get enough

> sweat. That's just disgraceful. I had numerous sweat tests before I

> was diagnosed with CVID, and I don't care what anyone says, they hurt if

> not done right. I was not a happy camper any time - I'd sit there

> counting down the minutes until they could take the electrodes off. But

> my friend with CF says the hospital must have had an antiquated machine,

> because hers at Childrens in DC never hurt her (and I generally have a

> higher pain tolerance for such things than she does). I hope the next

> one goes better... maybe some place that specializes in kids and CF

> would be more helpful the next time?

>

> Autumn - I am still thinking of you and the boys. I hope Cleveland goes

> well. I have cards for both boys, and will send them off as soon as I

> find a mailbox.

>

> Helen - I am still praying for you. Good for you for getting another

> doctor. I won't defend her, because there's a difference between being

> merely distracted by other things, and completely forgetting someone in

> your practice who has cancer. I hope you get a more responsive doc and

> more answers soon. Glad Matt overcame the sore throat with IVIG only!

>

> - Hope the move continues to go well. I know what you mean about

> the skin over the port, but hopefully they set it deep enough to avoid

> it breaking through. I've had mine for almost 3 years, and I've been a

> very normal weight for some of that, overweight from steroids for a

> brief period, and 25 pounds underweight from a virus for a few months of

> that, and my port has never changed, in terms of where it sits under my

> skin. I always still use the same length needle. That may not be true

> for a growing child, and as learns to do things like crawl, he

> will probably build his little pectoral muscles, and that should help

> protect the port, too. You can feel my port through my skin easily, and

> even through my shirt - you can trace the entire outline of the " well "

> portion - but I've never had any problems with skin breakdown, and I've

> gone months at a time accessed, changing dressings every other day to

> once a week during that time. I'm sure 's skin is more sensitive

> than mine - I've seen many preemies' skin after just regular IVs - but

> you said they worked to get it in deep, so hopefully it will stand up to

> the test. My port is a blessing to me - I couldn't function without it

> - so I hope you will have the same good feelings about it once

> everything settles into place. Also, don't worry if it's tender for a

> while. It took me about 4 or 5 months before it could be accessed or

> even touched, really, without me catching my breath in pain. That will

> probably help protect it, too, as the tissue grows in to hold it in

> place better - kind of built-in Pavlovian conditioning to not mess with

> the port while the area is healing! Good luck!

>

> Annette - Good to hear you made it to the IDF meeting. Sounds like

> they're kind of doing the same basic schpiel around the country at the

> different meetings. I am really glad you made it through your trip

> without anything terribly bad happening. You guys deserved a break!!!

> I hope Alyssa feels better soon!

>

> - Hope also feels better soon! Yuck - double infection...

>

> Ursula - Do you think Ty will donate the bears? Or are you going with

> the bears Annette suggested? If you have to do it by private donation,

> let me know... I know some people who'd be happy to make contributions

> so the kids could all get the same bear.

>

> Kirstie - What a nasty experience with the doc. I do agree that he was

> unneccessarily rude to you both, but on some level, I agree with what

> Ursula said. Ackkk - I can see both sides here, and it's complicated!

> Isn't Stef about 13 or 14? I know it's exhausting to talk to doctors,

> especially when it doesn't seem like it does much good, but I do know

> that many docs will just jump to conclusions when a teenager won't talk

> to them. Unfortunately, it's reality - not fair, but reality. Even if

> Stef could write down how she feels and take it into the doctor's

> office, maybe that would help. I do think that once a doctor has done

> something to violate my trust - and I don't know if that had already

> happened - I have no desire to talk to them anymore. In some cases,

> it's safe to say " I'm sorry, but I feel like our working relationship is

> already damaged, and I really don't feel like talking to you, so you're

> going to have to find someone else for me to talk to. " In other cases

> (if that's the only doc around, or if all the other docs are actually

> worse, or whatever), I've just had to suck it up and deal with that

> doctor, whether I wanted to or not, simply because it was in my best

> interest to get better. I've kicked a lot of doctors out of hospital

> rooms, or refused to talk to some (and in fact, a second year medical

> student heard that I once pulled the hospital covers up over my head and

> refused to talk to someone who had SERIOUSLY violated my trust and was

> truly incompetent, and he looked at me and said, " if I were the doctor,

> I'd be prepping to send you to the loony bin. " I was livid with the med

> student, and I spent 15 minutes telling him exactly why that was an

> inappropriate response!!! I try to educate my classmates/schoolmates

> early - before they get jaded - but even before they see their first

> patient, they're often jaded). So the point of that is that it's hard

> to know sometimes when to stick up for yourself (or your child) and when

> to go with the flow just to get things done. But learning to tell the

> difference is really important in being able to care for one's own

> health as you get older, and Stef may just need some help expressing

> things in a manner or situation that is more comfortable to her. At

> this point, I wouldn't try to convince her to talk to someone who's

> already violated her trust, but with the new person, I think I'd explain

> to her why a doctor might think this or that about her if she doesn't

> talk or write it out, so it would be best for her to say SOMETHING -

> even if it's, " I'm so tired, I barely have the energy to sit here, not

> to mention go through the whole story AGAIN. " Hopefully that will clue

> them into how tired and sick she is, too. Sorry for going back and

> forth - as I said, I can see both sides, and that's a difficult thing to

> juggle. Good luck, and please let Stef know I'm thinking of her and

> hoping she GETS WELL SOON!!! PS: Do they have her on anything for the

> Chlamydia? Maybe she needs a longer course of the Erythro or a similar

> drug (Biaxin, etc).

>

> Donna and Walt - we miss you and think of you often. I know it's hard

> to keep up with all the mail, but if you see this, please let someone

> know how you're doing... we care about you guys!

>

> Sorry I missed people - inevitable in a group this size. But did want

> to say hi and get over my guilt of not writing for a while!

>

> Take care, all... and hugs to the kids!

>

>

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

[Guest guest]

Ditto that ,

Here in Augusta it has been in the 100's with the heat index. And let me

tell ya, moving and heat do not mix!!!

, wife to Preston, mother to Shelbie 8, Mandy 3 and 14 months

Moderator of Military EFMs, IVH-Hydrocephalus, NewView and NICU Families

Registered Chat for Preemies Friends and Family.

----------------------------------------------------------------------------

----------------------------------------------

HEART-----Heart, intellect, awareness, mind, inner person, inner feelings,

deepest thoughts, inner self.

Re: Misc chit-chat

>

>

>Kirstie....Where do you live? It cold outside???? Here in Atlanta It's

been

>in the upper 90's to 100. We're dying here.... Send us that chill if you

>please.

>

>

>

>

>

>

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

[Guest guest]

Kirstie....Where do you live? It cold outside???? Here in Atlanta It's been

in the upper 90's to 100. We're dying here.... Send us that chill if you

please.