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Sharon - I am so so glad to hear that things went better this time.

Ursula Holleman

mom to (10 yrs old) and Macey (7 yr. old with CVID, asthma, sinus disease,

GERD, Diabetes Insipidus, colonic

inertia)

http://members.cox.net/maceyh

Immune Deficiency Foundation's 2003 National Conference

http://www.execinc.com/idf/

Immune Deficiency Foundation - Peer Contact for GA

http://www.primaryimmune.org

/

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Hi Sharon~~

I feel so bad to hear you sounding like you're at your wit's end. I have been

there, trust me!!! It is such an alone feeling. It's times like that when I

feel like nobody in the world understands what I'm going through. Just when

you think things are quieting down, something else pops up. It can be so

overwhelming! I know Lacey really well, and most times I can figure out what

it is she needs, but there are times when I don't know, and the doctors seem

not to know either. That is the worst for me.....feeling like I have to come

up with a diagnosis and treatment plan all on my own. Lacey has a lot of care

needs, including breathing treatments several times a day, vest treatments,

(for mucus clearance), nasal sprays, inhalers, she's Gtube fed, uses hearing

aids and a walker, needs routine meds 2-3 times a day, and is in diapers.

She's an adorable, precious, bundle of joy who's the love of my life, and I

absolutely adore every inch of her just like she is, but I'm only human and

sometimes I just go on overload!!

When she was at her very sickest, in the ICU for over a month on the

ventilator, requiring helium to ventilate her lungs because oxygen alone

wasn't working, I really depended on my church family to pray for us, because

I was completely unable to do it myself. I hope you know there are others of

us out here who do understand what it's like to watch your precious girl

suffer when she's sick, and we can pray for each other at times when it may

be hard to come up with the strength to do it ourselves. I will be praying

for you that you get some rest, and that wakes up in the morning

feeling SO much better.

By the way, Lacey is in her 5th month of IVIG, and we're still trying to find

the best routine for her. She had her infusion on Wed and he increased it to

20gms instead of 15, and she's now going every 3 weeks instead of 4. Could it

be that needs more IVIG, or more often? If she's getting sick in

between, maybe they will have to look at that. I know it takes a while to

find the exact treatment regimen, and I'm hopeful too that Lacey will be able

to stay healthy between treatments.

Hang in there and I'll be waiting for a happy update tomorrow when you've had

a good night's sleep~~

Belinda

Lacey's mom, (15, CdLS, immune deficiency)

Pittsburg, CA

<A HREF= " http://www.cdls-support.org/family/aug2001/index.html " >CdLS OSG:

Featured Family of August 2001</A>

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Belinda,

Thank you so much for your encouraging words. I truly appreciate every word,

and your prayers. Lacey is so blessed to have you. is doing much

better. Her ears are still a mess, which we see the ENT tomorrow, but we can

deal with that. She is able to get out of bed and eat now. Praise God. I

have caught up on my sleep so I am filled with new vigor and fight. Thank you

again for your encouraging words and prayers. I feel lifted up today. What a

wonderful God we serve!!

Love to you and Lacey

Sharon

s mom

Dale congratulations on your sons engagement!!!!! How wonderful to hear some

joyous news.

Lacey's mom, (15, CdLS, immune deficiency)

Pittsburg, CA

<A HREF= " http://www.cdls-support.org/family/aug2001/index.html " >CdLS OSG:

Featured Family of August 2001</A>

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Hi ,

Just thought I would tell you that my husband has severe acid reflux and has

tried all of the meds you listed. None of those helped him . The only thing

that has helped him is Prilosec. That is the drug that s immunologist

prescribed for her as well. It is really doing the trick. The problem is

insurance companies do not like to pay for it as it is very expensive. My

insurance does cover it but is constantly sending me letters asking me to change

to Prevacid. I am sticking what with what is working. GOod Luck and don't

give up hope. The fatigue can be life changing. Since is sleeping

better because of less reflux her energy has improved drastically. I hope you

find the answers soon.

Sharon

Sharon

Hi Sharon,

here, I've been catching up some news and have see some similarities

between my daughter and your .

has a very tough time with stomach pain, she has it more often than

not. She has tried Zantac, Reglan, Pepcid and Levsin. She is now on Pepcid 20mg

at night back from trying things. I hope continues to improve.

, mom to .

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In a message dated 6/2/2003 8:51:28 PM Central Daylight Time,

roseofsharon_ps121@... writes:

> Even at my top weight of 347, it never occured to me that he couldnt

> pick me up, why on earth would he need to? I guess now I know.

> Sharon in Onyx

> who is taking it day by day

>

Sharon,

There is something about picking you up that is a macho thing. I

have a suspicion it is the sweeping you off your feet kind of thing like Rhett

did in Gone with the wind. We were playing in the pool(A 3 ft 15 ft round vinyl

thing) and Tom said I bet I can pick you up...I said no way, and he

did....maybe 8 inches for about 30 seconds, but he was beaming. I bet at your

size he

snatched you right on up.

in Bama(Who was named after Miss in

GWTW)

http://hometown.aol.com/mdl1031/myhomepage/profile.html

Surgery- RNY to DS revision on12/6 -377.5

12/17 - 346.5 ( minus 31lbs)

01/15- 338.1 (minus 39.1lbs)

02/12-330.0 (minus 47.5 lbs)

04/06- 324.3 (minus 53.2 lbs)

05/02- 311 (minus 66.5 lbs)

05/12- 304.8 (minus 72.7 lbs)-BMI now 48

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In a message dated 6/2/2003 8:58:28 PM Central Daylight Time,

roseofsharon_ps121@... writes:

> Okay, Okay, before you all go ballistic on this typo....it is just a

> typo! I meant 6 ft. tall.......

>

> Sharon in Onyx

> who knows that she is in deep with this one....

> it is the drugs people, the drugs....oh my....

>

>

Oh my lord, With this bunch your in big time trouble.......

in Bama(who missed the typo....Thanks for

pointing it out!!)

http://hometown.aol.com/mdl1031/myhomepage/profile.html

Surgery- RNY to DS revision on12/6 -377.5

12/17 - 346.5 ( minus 31lbs)

01/15- 338.1 (minus 39.1lbs)

02/12-330.0 (minus 47.5 lbs)

04/06- 324.3 (minus 53.2 lbs)

05/02- 311 (minus 66.5 lbs)

05/12- 304.8 (minus 72.7 lbs)-BMI now 48

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> Oh my DS Sister.... You made me cry and laugh with you. I know

exactly how

> it feels though when your hubby says, " I CAN PICK YOU UP! " What a

neat

> feeling.

>

> Heres some prayers for a speedy recovery...

>

> Thinking of you,

> Melisa in CA

Thanks Melisa

You just never know where those magic moments are going to come

from. My DH has weighed 172 all his adult life (he is 6 " ) Five

years ago he had a triple by-pass and the drs wanted him to gain

some weight, 20lbs to be exact. Well he has finally done it, it

took him 5 years, but he is so proud. lol

Even at my top weight of 347, it never occured to me that he couldnt

pick me up, why on earth would he need to? I guess now I know.

Sharon in Onyx

who is taking it day by day

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> Sharon

>

> I am so happy to see you posting again. We missed you!!!!! Take

care of yourself and your new body though....I guess you'll be

heading out shopping soon :)

>

> Kristy

Thanks Kristy, but I wont be going out very soon. This is going to

take awhile, I am afraid.

And trying on things over this swelling and stitches just doesnt

appeal to me at all.lol

Sharon in Onyx

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My DH has weighed 172 all his adult life (he is 6 " ) Sharon in Onyx

> who is taking it day by day

******************************************************************

Okay, Okay, before you all go ballistic on this typo....it is just a

typo! I meant 6 ft. tall.......

Sharon in Onyx

who knows that she is in deep with this one....

it is the drugs people, the drugs....oh my....

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Thank GOD you corrected that before the comments started from these

pervert women on this list!

:)

Re: Sharon

My DH has weighed 172 all his adult life (he is 6 " ) Sharon in Onyx

> who is taking it day by day

******************************************************************

Okay, Okay, before you all go ballistic on this typo....it is just a

typo! I meant 6 ft. tall.......

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> Um, Sharon, since you fainted at the sight or perhaps at the

thought of him naked in the shower with you, I automatically assumed

he was bigger than six inches.

>

> Marta

> I am solemn, not laughing, not a bit.

Ah, Marta,

Finally a woman that understands me....lol That is what I told my

DH after I came to and quit crying. It was just the sight of him

naked that did it to me. LOL

He is so cute, he said yea, I know , even when your in pain you are

still horney...lol

Oh to feel better.

Sharon in Onyx

who is not laughing either....

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Sharon, sweetie! I'm sorry, I haven't been ignoring you. I just

haven't been caught up with my groups for several days. I did try to

call you and e-mail you privately. I hope you got at least one of

the messages. I'm so sorry you passed out! That's happened to me

twice in my life and it's never fun. And Mike could pick you up!

That is soooo cool!

BIG HUGS!

Tracey

>

That is what I told my

> DH after I came to and quit crying. It was just the sight of him

> naked that did it to me. LOL

> He is so cute, he said yea, I know , even when your in pain you are

> still horney...lol

> Oh to feel better.

> Sharon in Onyx

> who is not laughing either....

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> Just want you to know that God loves you,

> and I thank you.

> God bless,

> Pat in Taft

Thank you, my friend. God loves you too, and so do I.

Sharon in Onyx

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In a message dated 6/18/2003 6:22:20 PM Pacific Daylight Time,

roseofsharon_ps121@... writes:

> AAuugghh! Nick said he woke up one day and felt better

> immediately- maybe my day is tomorrow.

>

> Sharon in Onyx

> 12-20-01 335lbs Dr K

> 05-23-03 outer thigh removal, TT Dr.s K & Bae

> 06-10-03 192lbs

Sharon, I do hope and pray that your day is today, that you are no longer so

tired. Even though I had " trouble " with my incision after the DS, it is now a

distant thought -- this time will be that, soon, Sharon, very, very soon!

Hugs and blessings, Ann

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> Thank you,thank you, I love the clothes!!!!

> It is so nice to be in a 18,never thought

> that would happen....

> You R a good friend,glad you had a great

> weekend.

> Gods blessings to you and your family

> Pat

***********

Pat,

I am so glad you like the clothes. I hope you shrink right out of

them! I am just so happy that you will get some use out of them,

some I never even got to wear- oh darn...

But like you, I never dreamed that I would be a 16 and wearing

~amys~ jeans....lol

So enjoy, while you can , Hopefully I will save the 16s for you-

cause I am hoping to shrink outa these too....

Sharon in Onyx

who may be hoping for to much...

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I live in Copley, Ohio actually my mailing adress is Akron. Copley is a small community that at one time was more farm land than anything else. Now it is a busy little suburb. I have lived here for 24 years. I live in a ranch house with a nice size yard. I have a lovely garden thanks to my special friend who helps me take care of it. I have a brick patio with a little stream with a waterfall that my son built for me while I was recovery. I have a couple of fish in it but mostly plants and frogs. My back yard is all done in soft shades of pink blues and purples in the flowers. I also have a wooden deack off the patio with my white wicker furniture that my daughter and hr husband bought for me. I have a small pool that is my summer fun its only about 36" inches deep but it keeps me cool. I have two outdoor cats that live in our garden shed and I have two wire haired fox terriers. I have two son and one daughter all grown and gone.

Sharon

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---

>

>

> ::: Yea, be careful, to much of this drug could cause to be overly

> stimulated, stand to pee, and spit all the time. Not to mention

> walking around adjusting yourself. lol

>

>

> Sharon in Onyx

> who thinks she can stand and pee now tht she had her TT- gotta try

> it..lol

~~~~~~~~~~~~~

LOL,LOL,yea it can be done....hu Bonnie???LOL

Pat

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How far up the tree can you hit?

:)

Re: Sharon

> Sharon in Onyx

> who thinks she can stand and pee now tht she had her TT- gotta try

it..lol

LOL,LOL,yea it can be done....hu Bonnie???LOL

Pat

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--->

>

>

> Marta, is he still mourning the loss of his apron? Or is he

amazed

> at the flat tummy down there like I am- still.

>

> Sharon in Onyx

~~~~~~~~~~~~~~~

Just last night in church i had my bible on my lap,WoW!!

I have a lap...LOL I told the girl sitting next to me

" look it's not falling off,I have a lap " It still amazes

me that I have a lap...LOL

God's blessings

Pat

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> Just last night in church i had my bible on my lap,WoW!!

> I have a lap...LOL I told the girl sitting next to me

> " look it's not falling off,I have a lap " It still amazes

> me that I have a lap...LOL

> God's blessings

> Pat

Pat,

I know exactly what you mean. Things that normal (whatever that is)

people just take for granted, we are praising God for. Isnt it

wonderful?

Sharon in Onyx

still amazed

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> So far so good, girlfriend, but we want to see more of you!

>

> Marta

I am trying- but so far all I can get is before stuff...keeps saying

server is down...will keep trying the good stuff is yet to come

SinO

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Sharon,

Are you on any meds for the diabetes and if so what? If my blood sugar goes down to the 70's I get really wacky feeling. I feel the best when mine run a little high but the Endocrine, MD, wants me to keep mine below 125. He said with my liver he thought dropping it into a lower range might cause the lows to be worse. I've done much better on the Glugophage XR. Mine too was medicine induced, however I do have a sister who had gestational diabetes and a great aunt who is a diet controlled diabetic, so who's to say it wouldn't have happened any way.

Hope all is going well for you.

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In a message dated 8/4/2003 7:32:36 PM Pacific Daylight Time,

roseofsharon_ps121@... writes:

> so viewer beware

> Sharon in Onyx

> who loves the pic of her and her sister...

I love the photo of you and your sister, too! What a loving pic. Thank you

for posting the photos, especially the postop with drains and all (now, when

it gets close to my turn, I can be terrified)! LOL It helps to understand the

whole process.

Hugs and blessings, Ann

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Okay, I posted that I put in pics, but my post never showed up, so

if you get this twice I apologize.

I posted my pre plastic surgery pics from last nov when I was down

114 lbs. Then I posted pre-op pics of my panni and saddlebags.

Then I posted pics of me after surgery....

WARNING

some pics have modest, but partial nudity..so look at your own risk.

But these will show you that not all plastics are pretty, and not

all are cosmetic. Mine didnt make me beautiful, but they did take

care of my mobility problems and rashes.

so viewer beware

Sharon in Onyx

who loves the pic of her and her sister...

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