Re: Missy/Kerri

[Guest guest]

Kerri,

Wow thanks a lot Kerri, that's so nice of you to say I'm a good mother. I try

to be, but sometimes I baby her a lot. She may need it sometimes, but she still

wants me to do things for her when she's feeling better too. (she's a teensy bit

spoiled ) I do have to say she never fakes pain though. She believes the more

pain she has the more yucky meds she'll have to take.

I do totally thank God that he has smiled on her. Thank God we found a great

ped. rheum. as fast as we did. She could have gone mis-diagnosed for years as

I've heard others at this web site have. I feel especially fortunate when we go

to Children's Hospital. She has her Remicade IV infusion in the Oncology

infusion center. I am fairly certain that every time we are there she is the

least sick of all the children getting their IVs. On the way from the parking

garage to the Onc center we pass children who are in special wheel chairs that

you know are tailor-made and they are probably in them for life. We pass kids

with burns, kids with missing limbs, kids with CP and Downs. I am grateful that

she has a physical instead of mental disease. My step-grandaughter has CP and

Epilepsy. I see how much my poor 23 year old step-daughter has to do for her and

I am amazed at the fact that when your children need something you just DO IT. I

don't know how many people ask me how I can cope. How

can I give her shots and take her BP all the time. You know what?? " You do what

you gotta do " is what I say. Any mom (well nearly any mom) will rise to the

occasion, step up, and just do it.

has been sick since she was two, so she can't really remember ever NOT

getting IVs, shots, and yucky meds. Which may or may not be a good thing. Well,

good I guess, she doesn't put up too much fight since she knows there are no

options. She can never cry and get out of the situation. She's a trooper.

I think the worst time ever that I can remember (thank God she can't - she was

only two) was when she was her heaviest from the Prednisone. (Went from 29 lbs

to 52 in two months). Her veins were very constricted and her arms were so

chubbby that the nurses couldn't get an IV started. They said the numbing cream

further constricted her veins so they wouldn't use it. They blew every vein on

her poort little hands, arms, and feet. They must have tried eight times or so.

Finally they said they were going to put one in her head or neck but decided to

try the helicopter transport team instead. (They put them in while flying so a

child laying semi-still should be no problem they thought). Well, after a fight

they did get it in her inner ankle. I didn't even know you could put one there.

She fell asleep almost right after they got it in, she was exhausted. They kept

saying, " We'll give her a moment to calm down before we try again. " Translation:

We have other patients and can't focus only

on her. Which, I do understand, but every time any nurse would walk past our

door she would get hysterical thinking they were coming in again. We just wanted

it over with. I swear that day was the worst EVER. I can't believe I didn't have

a nervous breakdown. They made me hold her the entire time, which thinking back

I wanted to anyway since she's my baby. But, now they use numbing cream on her

skinny little arm and usually only try once or twice to get the IVs in. OOh I'm

rambling, sorry didn't mean to type this much. Thanks for the compliment, that

really made me feel good.

hugs,

Missy

kerri paquette <ksp2242@...> wrote:

Missy,

Sometimes, I must admit, that I do get the " why me " attitude. It seems as if I

never can catch a break. But I am blessed. At 28 I have two wonderful children

and a wonderful man in my life and I need to be grateful for those things and

seeing you speak of your daughter reminds me of that. What a blessed child you

have to have to suffer the way she must and still go on. She must be so strong

to go through all of this and I'm sure that even though it doesn't seem so at

times, that God is smiling down on her. I will keep you and your daughter in my

prayers. Thank you for being such a good mother and showing us how it is done.

kerri sue

MELISSA CRIGLER <nmsanders@...> wrote:

Hi . I'm new with this site also. My daughter, has JRA. She's six

now - was DX when she was two. I have researched her disease since she was DX

and I've learned more from this group in the two weeks I've been posting than I

did when I researched it for the past four years. Very informative while at the

same time supportive and NEVER judgemental (which with this disease is very

important-a lot of prejudice with slow and dangerous scooter drivers lol and

prednisone side effects and all {my 2 year old gained nearly 25 lbs in 2 months

on Pred).

By the way the docs put poor Emmie on 20 mg of prednisone a day for a week

then taper to 15 mg the next week. She's been in a lot of pain - been flaring

for about 2 weeks now. I hope she doesn't gain too much weight. Being in first

grade, kids can be mean. She's very skinny now so she's got a little leway. Last

time she was on steroids she was on them for a year and a half. She was on 40

and 67.5 mg of pred a day then. Has osteoporosis still and even grew blonde

" fuzzies " on her face from it while the hair on her head and arms fell out from

the Methotrexate (horribly ironic hugh?). It was awful, I'm so scared of what

will happen this time. She's been sitting at the table with a cookie in front of

her as a bribe waiting and stalling to take her Prednisone now. She can't

swallow pills, so she has to take the liquid. It truly is horrid smelling. If I

put it in anything when she's done with the meds she will never touch that food

product again. She won't eat applesauce now or drink

applejuice or chocolate milk either. Can just never win as a sneaky mommy.

Well, mail ya later

hugs Missy

N2kids@... wrote:

In a message dated 1/5/2006 12:18:40 PM Central Standard Time,

mtbargeman30@... writes:

Hi, guys. My name is . I was dx'ed with RA on Monday. I wonder if

anyone can give me suggestions about how to take care of myself and

fight fatigue. (I know that sounds whiny, but I really feel like

roadkill). Also, should I tell my kids now, or wait til I get my

regular meds for this? Does any one have any info or suggestions?

Any info at all is appreciated.

Hi and Welcome! I'm I'm fairly new here too and this group has

been so helpfull! Please dont hesitate to vent, whine whatever youneed to

do, we understand. here is a link to the main site that was given to me:

_http://arthritissupport.info/_ (http://arthritissupport.info/)

there is tons of info and links on this site. Have you seen a Rheumatologist

yet? Have they given you any meds? Tell your children if you feel they need

to know. Hugs take care talk soon