Long time posting

April 1, 2006

It's been so long since I have posted. I feel like things have been

spinning out of control. I have a granddaughter, she will be two

weeks old on Monday. Her name is Chloe Makayla, she weighed 7.6, and

19inches long. She is a beautiful girl. We got bad news on Friday.

She tested positive for cystic fibrosis. In two weeks she will be

getting a sweat test done at OU Medical Center in OKC, I suppose to

confirm the diagnose. I have been searching for information on this

disease. I have just been so upset over the news.

I have been to so many doctors, I need a vacation. I went to a

neurologist with all my symptoms they wanted to see if I could have

MS. With the MRI brain scan, they don't think so, but if other

symptoms, they will do a spinal tap. They did other tests. I have

neurofibromatosis, which tumors grow on the nerves. I have about 4

that have to be cut out in my brain. They usually are not cancerous,

so hopefully everything will be ok. They also diagnosed me with

peripheral neuropathy from the Lupus. The doctor talked to me about

Lyme's Disease, a lot of my symptoms seem like it. I have been sick

for so long. So, I will discuss this to my rheumy on my next visit.

That would be something to have LD all this time, and not RA.

I went to a hematologist Friday. Have to get lab work done, hep C

test, and ultrasound of my liver. So, all I have been doing is going

to doctors, and too many hospitals. It just seems like I get worse

each year, instead of better.

I have missed my RA family. It has grown so much, and a big welcome

to all the new members. I hope soon I can feel better, and get back

on here, I miss you guys.

If anyone would like to see a pic of my granddaughter you can check

out the hospital site. www.unityhealthcenter.net click on web

nursery, and put in March 20 O6 for the birth date, and click on

Chloe Makayla

Please, keep me, and the family in my prayers, love you all, Tawny

April 1, 2006

Tawny:

You have been such a strong support for me through the past year of

ups and downs I have had to deal with. I am so sorry to hear that

you are dealing with so much at the moment. As I mentioned to you

before, please make sure to keep your medical appointments and get

all your tests done. In order for you to be strong for your

daughters and grand-daughter, you need to be in good health. Make

sure you speak with your doc about all your symptoms and if you don't

think you are getting anywhere, ask for a second opinion.

Why is it that bad things seem to happen to such good people? I know

you've been through so much lately, but you are MUCH stronger than

you even know. You are my rock, and I have no idea what I would do

without you, Tracie and so many of the wonderful people that belong

to this site.

Hang in there, take each day as it comes. Sometimes, when things are

really bad.....I take it hour by hour. That way, I don't feel too

overwhelmed.

Your friend,

April 1, 2006

Yes, Tawny, it has been a long time since you've posted. I've missed

your posts; you have been our head cheerleader. I am sorry that you are

not doing well and have had to go to so many doctors. I hope that

things with you will be resolved soon and that you can get a firm

diagnosis so that you can be helped.

As for little Chloe Makayla, she is indeed a beautiful girl. I just

wanted to tell you that my youngest son who's now 35, had a sweat test

when he as a baby. At first he had pyloric stenosis and had to have

surgery for that. After that, though, he was not doing well and had

awful diarrhea. So one of the things they tested him for was cystic

fibrosis.

They wrapped him in plastic, almost completely except I guess his head.

Then they had to leave it on for a certain period to let him sweat.

They finally just told me to leave the hospital room, because I was not

taking it too well, I guess.

It will be interesting to see if they do the sweat test the same way

now that they did 35 years ago. I hope that Chloe does not have cystic

fibrosis, just as my son did not.

My thoughts and prayers will be with you.

Sue

On Saturday, April 1, 2006, at 09:55 PM, tdianaok wrote:

> It's been so long since I have posted. I feel like things have been

> spinning out of control. I have a granddaughter, she will be two

> weeks old on Monday. Her name is Chloe Makayla, she weighed 7.6, and

> 19inches long. She is a beautiful girl. We got bad news on Friday.

> She tested positive for cystic fibrosis. In two weeks she will be

> getting a sweat test done at OU Medical Center in OKC, I suppose to

> confirm the diagnose. I have been searching for information on this

> disease. I have just been so upset over the news.

April 2, 2006

Hi Sue,

No, fortunately they do NOT wrap the whole baby in plastic to test

for CF any more. My son had to be tested as a baby because he had

severe astham problems and repeated bouts of pneumonia, causing him

to be hospitalized over and over in his first few years of life.

He's 15 1/2 now, so the test was probably done 13 years ago now. At

that time, they just put a large pastic patch on his forearm, with

some very, VERY fine, coiled tubing attached. Then they just let

him play for a while. (if I remember, it was about an hour) The fine

tubing filled with sweat by capillary action, and even though there

was very little, that was all they needed to do the test.

The only bad thing about the whole procedure was that it was done at

the hospital in a pediatric unit, which meant he was exposed to

another set of germs, got sick again, and ended up hospitalized for

another round of asthma! :-/ Still, I was VERY glad to get the news

that he didn't have CF!

>

> > It's been so long since I have posted. I feel like things have

been

> > spinning out of control. I have a granddaughter, she will be two

> > weeks old on Monday. Her name is Chloe Makayla, she weighed

7.6, and

> > 19inches long. She is a beautiful girl. We got bad news on

Friday.

> > She tested positive for cystic fibrosis. In two weeks she will be

> > getting a sweat test done at OU Medical Center in OKC, I suppose

to

> > confirm the diagnose. I have been searching for information on

this

> > disease. I have just been so upset over the news.

>

April 2, 2006

Tawny,

I'm so sorry for all you and your family are going through. Chloe is

absolutely

beautiful! I pray that test was a false-positive. I know it's

upsetting to think

your beautiful granddaughter can be so sick, but try to stay positive

and keep

praying it is a mistake.

Your plate is entirely too full. Brain surgery? That doesn't sound

like fun. I hope they

plan to monitor the tumor's progression before doing something so

serious.

If they are not growing, maybe there is a chance that they won't have

to do surgery

Have they discussed trying radiation to shrink them first? I've read

that they can grown back

when surgically removed, and sometimes they grow even faster after

surgery.

I know you are in a whirlwind right now and have so many difficult

decisions to make.

Lyme disease can mimic RA so it's very possible that you've been

dealing with Lyme

rather than RA. Whatever the outcome, I just hope you get answers and

that they

lead to improvements in your health. Prayers are flying heavenward

for you and your

family.

a

On Apr 1, 2006, at 9:55 PM, tdianaok wrote:

> It's been so long since I have posted. I feel like things have been

> spinning out of control. I have a granddaughter, she will be two

> weeks old on Monday. Her name is Chloe Makayla, she weighed 7.6, and

> 19inches long. She is a beautiful girl. We got bad news on Friday.

> She tested positive for cystic fibrosis. In two weeks she will be

> getting a sweat test done at OU Medical Center in OKC, I suppose to

> confirm the diagnose. I have been searching for information on this

> disease. I have just been so upset over the news.

> I have been to so many doctors, I need a vacation. I went to a

> neurologist with all my symptoms they wanted to see if I could have

> MS. With the MRI brain scan, they don't think so, but if other

> symptoms, they will do a spinal tap. They did other tests. I have

> neurofibromatosis, which tumors grow on the nerves. I have about 4

> that have to be cut out in my brain. They usually are not cancerous,

> so hopefully everything will be ok. They also diagnosed me with

> peripheral neuropathy from the Lupus. The doctor talked to me about

> Lyme's Disease, a lot of my symptoms seem like it. I have been sick

> for so long. So, I will discuss this to my rheumy on my next visit.

> That would be something to have LD all this time, and not RA.

> I went to a hematologist Friday. Have to get lab work done, hep C

> test, and ultrasound of my liver. So, all I have been doing is going

> to doctors, and too many hospitals. It just seems like I get worse

> each year, instead of better.

> I have missed my RA family. It has grown so much, and a big welcome

> to all the new members. I hope soon I can feel better, and get back

> on here, I miss you guys.

> If anyone would like to see a pic of my granddaughter you can check

> out the hospital site. www.unityhealthcenter.net click on web

> nursery, and put in March 20 O6 for the birth date, and click on

> Chloe Makayla

> Please, keep me, and the family in my prayers, love you all, Tawny

>

April 2, 2006

,

I will go to the appointments, promise. I know I've missed several,

it's just so hard to get myself together, and make it. Yes, with

everything going on, I just take it as it comes really. You are so

supportive, even though you have so many problems. If not for my RA

family, I wouldn't have much support system. I am always so worried

about everyone in the family, don't have much time for myself. Just

know I appreciate you so very much, Tawny

>

> Tawny:

>

> You have been such a strong support for me through the past year of

> ups and downs I have had to deal with. I am so sorry to hear that

> you are dealing with so much at the moment. As I mentioned to you

> before, please make sure to keep your medical appointments and get

> all your tests done. In order for you to be strong for your

> daughters and grand-daughter, you need to be in good health. Make

> sure you speak with your doc about all your symptoms and if you

don't

> think you are getting anywhere, ask for a second opinion.

>

> Why is it that bad things seem to happen to such good people? I

know

> you've been through so much lately, but you are MUCH stronger than

> you even know. You are my rock, and I have no idea what I would do

> without you, Tracie and so many of the wonderful people that belong

> to this site.

>

> Hang in there, take each day as it comes. Sometimes, when things

are

> really bad.....I take it hour by hour. That way, I don't feel too

> overwhelmed.

>

> Your friend,

>

April 2, 2006

Hi Sue,

Thanks for the kind words. I do hope to get back on here soon, and

give some support around here. I read the sweat test isn't too bad

now. They put a patch on them, and it makes them sweat, and takes

about 45 minutes. You take care, and know your in my thoughts and

prayers, Tawny

>

> > It's been so long since I have posted. I feel like things have

been

> > spinning out of control. I have a granddaughter, she will be two

> > weeks old on Monday. Her name is Chloe Makayla, she weighed 7.6,

and

> > 19inches long. She is a beautiful girl. We got bad news on

Friday.

> > She tested positive for cystic fibrosis. In two weeks she will be

> > getting a sweat test done at OU Medical Center in OKC, I suppose

to

> > confirm the diagnose. I have been searching for information on

this

> > disease. I have just been so upset over the news.

>

April 2, 2006

Hi a,

She is a beautiful little girl, and she's captured her Grandma's

heart. I was there when she was born, and it was so awesome, that

will stay with me forever. There is so much going on right now, but

with prayers, it will all turn out right. I just hope by going to

all these doctors, they can figure something out. I am practically a

shut in now. I only go out for doc appointments, or to shop. Thanks

for your support and prayers, Tawny>

>

> On Apr 1, 2006, at 9:55 PM, tdianaok wrote:

>

> > It's been so long since I have posted. I feel like things have

been

> > spinning out of control. I have a granddaughter, she will be two

> > weeks old on Monday. Her name is Chloe Makayla, she weighed 7.6,

and

> > 19inches long. She is a beautiful girl. We got bad news on

Friday.

> > She tested positive for cystic fibrosis. In two weeks she will be

> > getting a sweat test done at OU Medical Center in OKC, I suppose

to

> > confirm the diagnose. I have been searching for information on

this

> > disease. I have just been so upset over the news.

> > I have been to so many doctors, I need a vacation. I went to a

> > neurologist with all my symptoms they wanted to see if I could

have

> > MS. With the MRI brain scan, they don't think so, but if other

> > symptoms, they will do a spinal tap. They did other tests. I have

> > neurofibromatosis, which tumors grow on the nerves. I have about

4

> > that have to be cut out in my brain. They usually are not

cancerous,

> > so hopefully everything will be ok. They also diagnosed me with

> > peripheral neuropathy from the Lupus. The doctor talked to me

about

> > Lyme's Disease, a lot of my symptoms seem like it. I have been

sick

> > for so long. So, I will discuss this to my rheumy on my next

visit.

> > That would be something to have LD all this time, and not RA.

> > I went to a hematologist Friday. Have to get lab work done, hep C

> > test, and ultrasound of my liver. So, all I have been doing is

going

> > to doctors, and too many hospitals. It just seems like I get

worse

> > each year, instead of better.

> > I have missed my RA family. It has grown so much, and a big

welcome

> > to all the new members. I hope soon I can feel better, and get

back

> > on here, I miss you guys.

> > If anyone would like to see a pic of my granddaughter you can

check

> > out the hospital site. www.unityhealthcenter.net click on web

> > nursery, and put in March 20 O6 for the birth date, and click on

> > Chloe Makayla

> > Please, keep me, and the family in my prayers, love you all, Tawny

> >

April 2, 2006

Nice to hear from you, Tawny! Sorry that you've got so many tough things to

deal with right now.

Congratulations on Chloe Makayla. What a cutie she is! I hope she will be

AOK.

That's terrible about the tumors in your brain. I'm sure it's frustrating

and scary to go round and round with your diagnoses, but, they might just

straighten them out, treat you appropriately, and maybe you'll finally get

the relief you need.

I'll keep you and yours in my prayers.

Not an MD

I'll tell you where to go!

Mayo Clinic in Rochester

http://www.mayoclinic.org/rochester

s Hopkins Medicine

http://www.hopkinsmedicine.org

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