To

November 19, 2006

OHH wow , thanks I will check her vid out immediately. what a joy! are you by chance a Christian?

all ways love, all ways Jesus! your sis, age 46 w/fibro asthma allergies etc,bipolar depression anxiety etc.mom of Nick age 24 wonderful adorable young man & pharm techAng age 22 college student doing great but happens to be blessed with this crazy thing called cfwife of , 48, trying to help fix us.(we aren't broken)and Lucy age 4 the dog

November 20, 2006

Dear Sue,

not any ONE person with cystic fibrosis has been cured. Throw in Down syndrome and I can't even imagine. You may be thinking of lung transplants and yes they can do those in the most dire of cases but the person still has CF. This is not only just a lung disease. Please don't lead into false hopes thinking there is a med or treatment out there for Phoebe. I wish there was and I would be first in line with my . Also the American Lung Assoc does little/nothing for CF. If she needs some info the CFF has a website. If wants more specific CF support and if she is a Christian she is very very welcome to join our little group on called CF 4 Christians. Actually there is no way for anyone to tell if she was not a Christian so no one would even care, we'd be overjoyed to have her join us. There are many ways to help in the fight to cure CF and it's all good. I don't mean this to be rude, Sue, only trying to help and Phoebe.

all ways love, all ways Jesus! your sis, age 46 w/fibro asthma allergies etc,bipolar depression anxiety etc.mom of Nick age 24 wonderful adorable young man & pharm techAng age 22 college student doing great but happens to be blessed with this crazy thing called cfwife of , 48, trying to help fix us.(we aren't broken)and Lucy age 4 the dog

November 20, 2006

I've heard that children born with DS, are just alittle close er to God then most other people. Have you read the books by Dale -? She and Roy, had alittle girl (I think her name was Robin) born with what we NOW call DS (It used to be called Mongoloidism). Her books are long out of print. So you might try the library, second hand, or antique book stores. I think even Roy wrote some books as well. So you might try looking for some. Sue Borkowski <julie@...> wrote: I guess I never really gave an intro, just lurked and posted a couple of times. So here goes… I am and I live about 30 miles outside of Austin Texas. I have a four year old son named Nolan who has the deepest brown eyes you have ever seen! He has a slight speech delay and takes speech therapy through the school district. His father died when he was a baby. We were not married, but that is a whole nuther story. I recently married my high school sweet heart after being separated from him almost

20years. We were soon pregnant and found out after the fact that we were both carriers of the cf gene. We decided to take what we were dealt and go ahead with the pregnancy. Well to our surprise Phoebe was born with Down’s Syndrome and Cystic Fibrosis, very very rare combination of disorders and has most of the doctors stumped. We have had a wild ride with some very scary times when we almost lost Phoebe. My pregnancy was horrible with the last two months on hospital bed rest preeclamsia, and gestational diabetes. We delivered Phoebe one month early by csection and hit the floor running with treatment care hospitalizations etc. There was no time for me to recover and I still have not caught up on rest. Unfortunately I do not trust anyone to care for her like I do. I am not being stuck up, but no one else is as vigilant as I am. With Phoebe if you are not strict with

her care and treatments, she can slip into sickness very easy. Anyway, if you want to see a short video about her struggles click the link below my signature. It is a fundraising site from the buddy walk, but just click the link and watch the video, I am not soliciting money!!! Dinkins-Borkowski See Phoebe's video

here:http://www.active.com/donate/buddywalk2006/phight4phoebe From: [mailto: ] On Behalf Of MSent: Sunday, November 19, 2006 9:33 PM Subject: Re: to Thanks for the prayers they are always welcome and needed. I missed your intro, could you resend privately? brenda.moreysbcglobal (DOT) net I hope Phoebe is doing ok., does she have heart problems as well? all ways love, all ways Jesus! your sis, age 46 w/fibro asthma allergies etc,bipolar depression anxiety etc.mom of Nick age 24 wonderful adorable young man & pharm techAng age 22 college student doing great but happens to be blessed with this crazy thing called cfwife of , 48, trying to help fix us.(we aren't broken)and Lucy age 4 the dog For a REALLY HOT time check out http://www.peternoone.com and http://www.mikesmith1964.com

November 20, 2006

Yes I

am, proudly.

Dinkins-Borkowski

Cf support and be 'Phoebe-Chic' here:http://www.cafepress.com/phoebesphight

See Phoebe's video

here:http://www.active.com/donate/buddywalk2006/phight4phoebe

From: [mailto: ] On Behalf Of M

Sent: Monday, November 20, 2006

1:43 AM

Subject: Re: to

OHH wow ,

thanks I will check her vid out immediately. what a joy! are you by chance a

Christian?

all ways love, all ways Jesus! your sis,

age 46 w/fibro asthma allergies etc,bipolar depression anxiety etc.

mom of Nick age 24 wonderful adorable young man & pharm tech

Ang age 22 college student doing great but happens to be blessed with this

crazy thing called cf

wife of , 48, trying to help fix us.

(we aren't broken)

and Lucy age 4 the dog

November 20, 2006

I do understand the no insurance!! And I

watched my poor brother struggle to get his disability.

They finally did award it to him, but he never received the first check. We do not qualify for SSI, but have been awarded

disability due to my husband’s severe stroke.

However, he had his stroke May 3rd, and we have had to wait until

Dec. 3rd to get the first

check. Not many households can make

it 7 months with no income, and we are just hanging on by our toes and the

graciousness of family. I cannot

work because my husband cannot be left alone.

So, we have turned to alternative methods, some that appear pretty radical to

many, but have surprised the heck out of me by working.-

And it has cost us next to nothing.

So, we are heartened by the way we feel and believe that we are going to get through

this somehow.

“All will be well, all will be well,

all manner of things will be well.”

I do not not remember who said this, but I use it as a mantra.

Blessings,

Nikki

I Have no INSURANCE !!!!

I have to use the VA, and TRYING to get SSI,

November 20, 2006

>OH I deffinatelly UNDERSTAND !

I live with my 64 y/o Mother whom still works 5 days a week and a

buddy of mine from Cincinnati stays with us a lot to help us out.I

feel so bad at 53 years old and have to rely on my 64 y/o mother ad

best friend, ad BTW If he doesn't go to Heaven KNOWONE WILL !!!!

I'm just fortunate I have a VERY Healthy and alert 84 y/o Mother and

a Great Friend.

I have a daughter who is 17 and I ca't give her a lot but LOVE, add

she uderstands. She is my Rock. Her Mother is, Get this a Clenical

Coordinator at a hospital and makes about 150,000 thousad a year and

has a Master in Nursing, and could care LESS. OH WELL....

Peace and take care.

> I do understand the no insurance!! And I watched my poor brother

struggle

> to get his disability. They finally did award it to him, but he

never

> received the first check. We do not qualify for SSI, but have

been awarded

> disability due to my husband's severe stroke. However, he had his

stroke

> May 3rd, and we have had to wait until Dec. 3rd to get the first

check. Not

> many households can make it 7 months with no income, and we are

just hanging

> on by our toes and the graciousness of family. I cannot work

because my

> husband cannot be left alone. So, we have turned to alternative

methods,

> some that appear pretty radical to many, but have surprised the

heck out of

> me by working.- And it has cost us next to nothing. So, we are

heartened

> by the way we feel and believe that we are going to get through

this

> somehow.

>

> " All will be well, all will be well, all manner of things will be

well. " I

> do not not remember who said this, but I use it as a mantra.

>

> Blessings,

>

> Nikki

>

> I Have no INSURANCE !!!!

>

> I have to use the VA, and TRYING to get SSI,

>

November 20, 2006

Nikki, your mantra is soothing just to read it. I think I will adopt it... SharonNikki Cowan <nikkicowan@...> wrote: I do understand the no insurance!! And I watched my poor brother struggle to get his disability. They finally did award it to him, but he never received the first check. We do not qualify for SSI, but have been awarded disability due to my husband’s severe stroke. However,

he had his stroke May 3rd, and we have had to wait until Dec. 3rd to get the first check. Not many households can make it 7 months with no income, and we are just hanging on by our toes and the graciousness of family. I cannot work because my husband cannot be left alone. So, we have turned to alternative methods, some that appear pretty radical to many, but have surprised the heck out of me by working.- And it has cost us next to nothing. So, we are heartened by the way we feel and believe that we are going to get through this somehow. “All will be well, all will be well, all manner of things will be well.” I do not not remember who said this, but I use it as a mantra. Blessings, Nikki I Have no INSURANCE !!!! I have to use the VA, and TRYING to get SSI,

Sponsored LinkMortgage rates near 39yr lows. $310,000 Mortgage for $999/mo - Calculate new house payment

November 20, 2006

I appreciate

all the comments love and support. I am just glad there are online

communities out there for moral support and encouragement. Phoebe is an

angel in her living and brings very special people into my life in very strange

ways. I do belong to CF 4 Christians and find it a very positive and

uplifting group. I like this group because yall seem to be more aware of

the struggles of multiple diagnosis’s. Sometimes posting things on

the cf or down’s board they do not always understand the complexities of how

multiple diagnosis affect a person. For instance I posted a question on

the cf board about dealing with all the mucus when your kid has the sniffles

and many many people wrote back for me to teach her how to use a Kleenex since

she was two. Because of the down’s she is on a 6-9 month level so

that did not help and people had a hard time grasping that concept. I am

just glad I can be a part of group with so many people who do understand and

care.

Hugs,

Dinkins-Borkowski

Cf support and be 'Phoebe-Chic' here:http://www.cafepress.com/phoebesphight

See Phoebe's video

here:http://www.active.com/donate/buddywalk2006/phight4phoebe

From: [mailto: ] On Behalf Of M

Sent: Monday, November 20, 2006

2:46 AM

Subject: Re: to

Dear Sue,

not any ONE person with cystic fibrosis has been cured.

Throw in Down syndrome and I can't even imagine. You may be thinking of lung

transplants and yes they can do those in the most dire of cases but the person

still has CF. This is not only just a lung disease. Please don't lead

into false hopes thinking there is a med or treatment out there for

Phoebe. I wish there was and I would be first in line with my . Also the

American Lung Assoc does little/nothing for CF. If she needs some info the CFF

has a website. If wants more specific CF support and if she is a

Christian she is very very welcome to join our little group on called CF

4 Christians. Actually there is no way for anyone to tell if she was not a

Christian so no one would even care, we'd be overjoyed to have her join

us. There are many ways to help in the fight to cure CF and it's all

good. I don't mean this to be rude, Sue, only trying to help and Phoebe.

all ways love, all ways Jesus! your sis,

age 46 w/fibro asthma allergies etc,bipolar depression anxiety etc.

mom of Nick age 24 wonderful adorable young man & pharm tech

Ang age 22 college student doing great but happens to be blessed with this

crazy thing called cf

wife of , 48, trying to help fix us.

(we aren't broken)

and Lucy age 4 the dog

November 21, 2006

, make sure when you apply for ssi that you list all your symptoms , especially depression related as they are more likely to get approved . Hep C is a disease that traditionaly has been hard to get ssi for , but things like depression and mental illness are accepted ...

Re: Re: To

I Have no INSURANCE !!!!

I have to use the VA, and TRYING to get SSI,

Sponsored LinkMortgage rates near 39yr lows. $510,000 Mortgage for $1,698/mo - Calculate new house payment

November 21, 2006

For real, my best friend who I dearly love, got SSD for her bipolar disorder. Not that she didn't need it, she does. She was a LPN for many years 27 year in fact. And she is a wiz about medications. She can tell you backwards and forwards about any medication that you might think of. I still have to use the PDR for many drugs because it is hard to remember all the different sides,uses and so forth. But not her. She was really good. But with her mood swings, errant behavior it was hard for her to hold down a job. She would call in on a whim if she felt the least bit depressed. Which makes staffing a b*tch if you have a small staff. I am glad she got it. Love Janetelizabethnv1 <elizabethnv1@...> wrote: , make sure when you apply for ssi that you list all your symptoms , especially depression related as they are more likely to get approved . Hep C is a disease that traditionaly has been hard to get ssi for , but things like depression and mental illness are accepted ... Re: Re: To I Have no INSURANCE !!!! I have to use the VA, and TRYING to get SSI, Sponsored LinkMortgage rates near 39yr lows. $510,000 Mortgage for $1,698/mo - Calculate new house payment Take the ordinary

things of life, and make them your own. Do the impossible with a smile

November 21, 2006

> , make sure when you apply for ssi that you list

all your symptoms , especially depression related as they are more

likely to get approved . Hep C is a disease that traditionaly has

been hard to get ssi for , but things like depression and mental

illness are accepted ...

> Re: Re: To

>

> I Have no INSURANCE !!!!

> I have to use the VA, and TRYING to get SSI,

>

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

> Sponsored Link

>

> Mortgage rates near 39yr lows. $510,000 Mortgage for $1,698/mo -

Calculate new house payment

>

> Take the ordinary things of life, and make them your own. Do the

impossible with a smile

>

December 9, 2006

Sorry to hear about . It must have been very hard on you, especially because he was your first born. Jen nancydewolf <nancydewolf@...> wrote: 17 & 20, that explains their not being so impressed! :-) I have an 8 1/2 year old boy, , and a 5 year old

girl, Miriam and both are, for now, easily impressed!! :-) I try to have a lot of fun with them but my husband is really the sillier parent, especially because he's not around them 24/7! We also had a little boy, , who died when he was not quite 3 days old. He would have turned 10 at the end of September. Because of him and other experiences, I try very hard to be a fun, silly but still serious and ready to lead parent. Now I'm trying to lead by example with exercise and eating right. The kids tell me about school and I tell them what I did while they were gone, including the fact that mommy exercised today! They're so proud of me when I tell them that, it is so cute! That's more encouragement because I want to be able to show and tell them about mommy staying healthy! I don't break into spontaneous yoga poses or stretches (yet??) but I can get down on the floor or out in the yard and play actively with them without getting tired! :-) Re: TO Kerry LOL!!! Yes, well, thank you so much for being impressed, I sure was. My daughters are 17 and 20, so I guess they should be

used to my quirkiness by now. Sometimes I just feel like I gotta stretch! We do have a lot of fun together. How old are your children? Kerry Wow Kerry, I'm very impressed even in if your DD isn't! Love the breaking into yoga poses and stretches, that is hilarious! How old are your daughters? Sounds like you have lots of fun together!

December 10, 2006

Thank you Jen. It was horrible and yes, it made it extremely frightening to try and have other kids (we never knew for sure what happened to and the docs told us we'd be rolling the dice in having more children, but did encourage us to do so anyway). Thankfully, and Miriam are healthy ( has a sensory processing disability but is doing extremely well so I consider him healthy overall). Again, thank you for you kindness.

Re: TO Kerry

LOL!!! Yes, well, thank you so much for being impressed, I sure was. My daughters are 17 and 20, so I guess they should be used to my quirkiness by now. Sometimes I just feel like I gotta stretch! We do have a lot of fun together. How old are your children?

Kerry

Wow Kerry, I'm very impressed even in if your DD isn't! Love the breaking into yoga poses and stretches, that is hilarious! How old are your daughters? Sounds like you have lots of fun together!

January 3, 2007

Hi , I watched the ceremony for Yzerman too! I thought it was suppose to be from 6:30 to 7:30 pm then I could go to volleyball and be there in time to start playing from 8 to 10pm...WRONG! I stayed until his jersey was raised to the rafters just before 8 pm then hurried to volleyball. I was only about 10 mins late so that wasn't too bad. If you are short on time and you said that you had DOMS? Why not do a short stretching tape? I have DOMS now from playing volleyball. We played 3 against 3 because there wasn't very many people there so I got a really GOOD workout in. Tomorrow,

it's back to my original BB/walking plan. Be sure to ask me if I did it yet that will keep me accountable. Could you do me a favor? Can you copy and mail me or scan and email me that WW book? Jen spikes the ball and and it's a KILL...LOL nancydewolf <nancydewolf@...> wrote: Oh well. Was planning to work out but hubby went back to work (had all last week off) and kids weren't back to school so it was a busy mommy day with no other parent to sic the kids on! Wanted to tonight after dinner but DH reminded me it was the night the Detroit Red Wings (hockey for those of you wondering) would be retiring Captain Steve Yzerman's jersey and I wanted to see the ceremony. I expected it to be 1/2 hour and then I'd be downstairs while he and the kids watched the first period. WRONG.

It was 1 1/2 hours and by the time it was done it was time to get the kids in bed and then it was already after 8:30 so too late for me to do anything. Feeling a lot of DOMS in my arms today too, not really sure why, maybe all the waving around doing Kari 's step routine yesterday (plus the other 6 days of various stuff). Tomorrow is my first day with no one but me in my house for a few hours since Dec. 20... this is the first year I've had ANY significant, regular time in the house by myself in 8 years and it was really hard at first, not having any kids in the house for a few hours, but I got used to having no one to wait on really quickly! Wednesday is usually a volunteer at school and grocery shop morning but I'm not needed at school and decided to put off grocery shopping until Thursday just to enjoy the silence and, of course, get a good workout in too! Not sure what I'm doing yet but that's okay. Got a very interesting booklet at my Weight Watchers meeting today with a comprehensive, paced plan for adding exercise into your life if you're not already active and then steps to gradually build your activity level and make it a regular part of your life at various stages of activity level. It was a bit strange only because I'd just really started thinking hard along those lines and here was this very detailed plan with realistic goals, advice and timing for the goals! If anyone wants info I can post the general ideas later. It was the quickest read and easiest to understand/implement program I've seen in a long time. I've noticed, for those who've done WW in the past, that with the newest program fine-tuning (introduced end of December 2006) they've put a much bigger emphasis on exercise and really helping people get and stay active, instead of just saying "and exercise too" like they used to seem to say.

That's good because I can use all the help I can get!!! Will post a workout tomorrow!

January 4, 2007

nancy, i just wanted to say how proud i am of you for sticking with

kari anderson's GO workout and for getting the steps down!! good

for you!!!! be proud!

:*carolyn.

January 4, 2007

Thank you so much Carolyn!!! I'm still working on that second workout but I have a lot more confidence now, your support and many others here helps me so much!!!

Re: TO

nancy, i just wanted to say how proud i am of you for sticking with kari anderson's GO workout and for getting the steps down!! good for you!!!! be proud!:*carolyn.

March 30, 2007

To :

Ray's ('s) message is powerful, and it kinda hits really close to

home for me. Although my family has not had the opportunity to visit

someone like Dr Krigsman, my son was tested by Dr Singh. We saw the

same MBP antibodies. My son did not test positive for elevated

measles antibodies per se, however he did test positive for a

Measles-Mumps-Rubella (MMR) antibody which, as I understand it, is

very specific to a particular protein found (only?) in the MMR vaccine.

Dr Singh forwarded me a copy of one of the many studies he's done in

the autoimmunity area (Journal of Biomedical Sciences 9:359-364, 2002)

in which he describes the significance of this association.

To say this was frightening would be an understatement.

We also have the post-challenge metal tests (elevated mercury, lead,

arsenic - all consistent over time, over tests) - the follow-up

porphyrin profile shows same trend. From all the potential metal

sources over time, it's hard to sort out the chicken-and-egg thing

when it comes to metals and MMR in my son.

By the time the reminders from the public health office started

coming around to catch up on the shots, my son's health (gut) was

already improving - because we took him off of the stuff that

seemed to really harm him (like milk, soy). I finally

started to clue in and take a harder look at the vaccine controversy,

- we had already been on the biomed road - so the opt-out forms were

signed and notorized and delivered. No more shots. No MMR #2.

Even if I can't prove (or even effectively argue) causation, it's

really about trust. I gave up trying to explain why I don't trust the

system - instead I expect the system to earn my trust - full open

unhampered unbiased government-funded non-conflicted investigation

into all the potential causes of autism - nothing less - and so far

the system is failing in that regard - you must see that - everyone on

this list does - I believe you are trying to change it - thank you.

I can't tell you how you should handle this mess from your side -

several others here have started (and will probably continue) to voice

more politically seasoned opinions in that regard. But how many

people have you already run flat into who just want you to shut up and

go away? I won't speculate, but however many, and however you do it,

I hope you bury them all.

No pressure. Hope your son fully recovers soon.

-randy

>

> Dear :

>

> Our son, is 22 years old and was born normal and then regressed

into

> autism after the MMR vaccine. Arthur Krigsman, MD did a colonscopy and

> endoscopy on finding that had colitis and a painful

stomach tissue

> (abnormal) in his throat that Dr. Krigsman said must be very painful. I

> understand that you have seen Dr. Krigsman regarding your

son.....excellent

> move. Dr. Vijendra Singh did blood work on showing he had elevated

> measles antibody titers and tested positive for myelin basic protein

> antibodies indicating an autoimmune disorder caused by the MMR vaccine

> (which has no mercury in it). Dr. Jim Oleske did the same blood work

on

> at UMDNJ, Newark, NJ and found that had elevated measles titer

> antibodies.

>

> 's story is on line at:

> http://www.vaproject.org/personalstories/erics-story.htm

>

> You may want to get in touch with F. Yazbak, MD at:

>

> TLAutStudy@...

>

> He is a pediatrician and knows a lot about vaccines and has a

grandson with

> autism.

>

> I knew back in 1995 that the MMR vaccine and other vaccines could cause

> problems. Unfortnately I learned after the fact and our family has

paid the

> price. He is in an out-of-state residential center where he is

drugged up

> and unless we want to take him home and deal with his aggressions on our

> own, we are stuck. Either go along with what they want or deal with

on

> our own.

>

> I say all this in the hope the we can eventually get funding for

> Wakefield, Vijendra Singh, Arthur Krigsman, Jim Oleske and others

that will

> look at the MMR vaccine link to autism.

>

> Thank you.

>

> Ray Gallup

>

> Lake Hiawatha, NJ 07034

>

> http://www.vaproject.org/

>

> Feel free to contact me at:

>

> highnoon@...

>

March 30, 2007

Dear Randy,

Thank you.

Sounds like the vaccines and then the MMR vaccine put your son over

the edge like . Once a parent determines the vaccines did their

child in, it is wise to stop any more vaccines from doing more

damage. What the parent does is more important since the medical

community and government health officials will not step in and claim

liability....they will claim deniability instead. You can stop them

with a religious exemption and if you get a hard time you bring in

state legislature people who passed the state religious exemption

from vaccine law. They can't fight the parent and politician too.

Last resort, a good lawyer.

My son has no voice so as parents we have to speak up for him when

we can.

Ray

> >

> > Dear :

> >

> > Our son, is 22 years old and was born normal and then

regressed

> into

> > autism after the MMR vaccine. Arthur Krigsman, MD did a

colonscopy and

> > endoscopy on finding that had colitis and a painful

> stomach tissue

> > (abnormal) in his throat that Dr. Krigsman said must be very

painful. I

> > understand that you have seen Dr. Krigsman regarding your

> son.....excellent

> > move. Dr. Vijendra Singh did blood work on showing he had

elevated

> > measles antibody titers and tested positive for myelin basic

protein

> > antibodies indicating an autoimmune disorder caused by the MMR

vaccine

> > (which has no mercury in it). Dr. Jim Oleske did the same blood

work

> on

> > at UMDNJ, Newark, NJ and found that had elevated measles

titer

> > antibodies.

> >

> > 's story is on line at:

> > http://www.vaproject.org/personalstories/erics-story.htm

> >

> > You may want to get in touch with F. Yazbak, MD at:

> >

> > TLAutStudy@

> >

> > He is a pediatrician and knows a lot about vaccines and has a

> grandson with

> > autism.

> >

> > I knew back in 1995 that the MMR vaccine and other vaccines

could cause

> > problems. Unfortnately I learned after the fact and our family

has

> paid the

> > price. He is in an out-of-state residential center where he is

> drugged up

> > and unless we want to take him home and deal with his

aggressions on our

> > own, we are stuck. Either go along with what they want or deal

with

> on

> > our own.

> >

> > I say all this in the hope the we can eventually get funding for

> > Wakefield, Vijendra Singh, Arthur Krigsman, Jim Oleske and others

> that will

> > look at the MMR vaccine link to autism.

> >

> > Thank you.

> >

> > Ray Gallup

> >

> > Lake Hiawatha, NJ 07034

> >

> > http://www.vaproject.org/

> >

> > Feel free to contact me at:

> >

> > highnoon@

> >

>

July 22, 2007

Patty, You are a wonder! You sound like you have a really good handle on what

this disease does...and to find a blessing in it....wow!

Tell me, what do you mean by thrushes? I drink cokes and DPs occasionally, but

usually sugar free drinks... I'll quit if I need to. I just don't know what

thrushes are lol. You and Larry sound like fabulous people. I wish you many

blessings (but hopefully not ones derived from adversity).

July 22, 2007

Patty, You are a wonder! You sound like you have a really good handle on what

this disease does...and to find a blessing in it....wow!

Tell me, what do you mean by thrushes? I drink cokes and DPs occasionally, but

usually sugar free drinks... I'll quit if I need to. I just don't know what

thrushes are lol. You and Larry sound like fabulous people. I wish you many

blessings (but hopefully not ones derived from adversity).

July 22, 2007

Patty, You are a wonder! You sound like you have a really good handle on what

this disease does...and to find a blessing in it....wow!

Tell me, what do you mean by thrushes? I drink cokes and DPs occasionally, but

usually sugar free drinks... I'll quit if I need to. I just don't know what

thrushes are lol. You and Larry sound like fabulous people. I wish you many

blessings (but hopefully not ones derived from adversity).

July 22, 2007

Hey ,

Thanks for your sweet note. Thrush is what some babys will get from sucking

on bottles. It is a type of yeast. And sugar from drinks will feed the yeast.

It can hurt and it looks like a white fungus on the tongue. Larry's was so bad

the Doctor had his Nurses to come and see his tongue. And yes we have had many

blessing through out this trying time. When you find out who you can depend on

and who you cant. And when you can do nothing but learn to talk to each other.

Talking and being honest with your feeling good or bad is the best way to deal

with this terrible disease. Larry and I are best of friend first and then

sometimes i have to be well for the lack of a better term MOM. It can be hard

but just think how hard it can be for him that i have to take over most

decisions. He was a very active person and always had to be doing something,

now he has had to learn his limits and allow me to take over. He has developed

a real good since of humor and can laugh at

himself now. He use to be real serious most of the time. He has learned how

to play thanks impart to our one year old granddaughter. His since of humor

has really helped him such as his over sized belly, he calls it his prednisone

baby. Larry was always very thin until Stills and prednisone. It was hard at

first but he is excepting it now. These are just a few blessing i was talking

of. Anyway I hope this has helped. Again thanks for your sweet note.

God Bless

Patty

Bouldin wrote:

Patty, You are a wonder! You sound like you have a really good handle on what

this disease does...and to find a blessing in it....wow!

Tell me, what do you mean by thrushes? I drink cokes and DPs occasionally, but

usually sugar free drinks... I'll quit if I need to. I just don't know what

thrushes are lol. You and Larry sound like fabulous people. I wish you many

blessings (but hopefully not ones derived from adversity).

July 22, 2007