Barbara

December 18, 2003

Hi Barbara! I'm going to see if the Armour helps my symptoms first before trying

meds again for IBS. Yeah...great fun! Mostly my IBS is constipation though. When

I get really upset though, I get diahrrea. my mom is the same way.

Yeah, getting samples is definitely a perk of this job. Considering it cost me

over $250 a month just for meds (this is with insurance), I really do need

samples. I can't afford this! I don't get them for myself though. I have one of

the medical assistants get them for me, and they document it in my chart.

I really don't know how they document what's taken since I don't have a key to

the either of the sample closets. I never bothered to ask.

At the doctor's office I " retired " from many years ago, I did have a key to

where we kept our samples. We had to document what went in and out.

Take it easy, lady! Hugs, Sheila

BARBARA SCHULZ <beschulz@...> wrote:

Irritable Bowel Syndrome...it's great fun. Have had it for years! Meds never

worked so I let mother nature have her way with me! LOL Good luck with the

meds! And one more thing, could you save a few drugs for the rest of us? LOL

How can you keep track of what get's taken when?? LOL

kemalandsheila@... wrote:Hi all. well, i saw the nurse practitioner today

at my endo's

office, and she is Rxing Armour 60 mgs., once daily. (I think I

should cut mine in half & take it twice a day--seems like I keep

reading that).

In addition to the Armour, she wants me to continue to take the

Cytomel (5 mcg twice a day). She said I could increase the Cytomel

if I don't feel like it's enough in a few weeks and take 2 Cytomel

twice a day.

Anyway, i haven't heard of anyone taking both Armour and Cytomel.

Anyone here doing that combo? I need to call her back and ask her if

I'm supposed to take the Cytomel the same time I take the Armour or

what.

Opinions...comments...She told me adding the Cytomel with the Armour

would increase my energy. I just hope I can feel a big difference

with the Armour

She is quite aware of that my TSH is in the hyper range. She had a

bunch of tests run on me today...including testing for Sjogren's.

She said as long as I'm not having signs of being over-medicated, we

don't have to worry too much about the TSH...just concentrate on my

symptoms.

She also seems more interested in getting to the bottom of my

symptoms. She's running some more glucose tests on me. she also

asked if there's a possibility I may have attention deficit

disorder. I said no way. My husband, who was with me, disagrees.

i go tomorrow to be evaluated by a state group which helps people

with disabilities. They have accepted me as a client. I will be

evaluated by my counselor tomorrow. Then she will schedule

psychological testing for me so someone can finally determine if I

indeed that dyscalculia as my pysch professor diagnosed me with.

I'll just mention to my counselor that I want to know about

attention deficit disorder too and why.

she also thinks i have irritable bowel syndrome. I told her i was

previously diagnosed with that but the medicine I was prescribed

didn't help. so she has prescribed another.

she also said we could look at me possibly going on some medication

which would increase the chances of saving my pancreas and

decreasing the chance of me becoming diabetic.

Oh, she told me something interesting. She said in the year that she

has worked for my endo, every single person whom she has talked to

who has switched from T4 or T4/T3 and gone to Armour has said they

felt SO much better. I hope, I hope, I hope this stuff works for

me!!!

so that was my endo appt. on the 5th floor of the hospital at 2 p.m.

At 1 p.m., I as on LL2 of the hospital seeing the nurse practitioner

at my doctor's office where I work. I've been miserable for several

days now. She said I have bronchitis and URI. She's given me an

antibiotic and a cough medication that she says is okay for me to

take with my thyroid issues. I can't remember the name of it.

When we went to the pharmacy to fill the prescriptions, they were

out of the cough medication; they said they can't keep it in stock.

I am contagious, so poor Kemal will probably end up getting this

crud!

So that's been my day...coughing, sneezing, but finally...oink,

oinking!! A hopeful member of the piggy club, Sheila

January 28, 2004

Thanks, Barb!!! Silly girl!!! You WANTED more of that white stuff???

How about we just send you all ours (not like we have a lot

though)!!!

Yesterday it was so freaking cold I froze my A_S off waiting for

buses!!! it was very windy. today we're at a whopping 18 degrees I

think!!! at least no ice!!!!

my hands were turning white yesterday with two pair of gloves on. I

need to buy one of those little heaters!!!

do you ski? Hugs, Sheila

> Hi all: Well, I've been on Armour now for 6 weeks. I haven't had a

> migraine in 7 weeks. Unbelievable!!!! Tomorrow I will stop taking

> the anti-convulsant to prevent migraines.

>

> In addition, I've been weaning myself off anti-inflammatories. I

was

> scared to go down to 1/2 tab every other day because I expected

> increased pain. After a week, however, that has not happened. So,

> I'm going to continue one more week at this pace, and then after

> that, go to 1/2 tab just twice a week and see what happens. If the

> excruiating arthritis pain doesn't show its ugly head, then I'm

> going off the stuff completely.

>

> I don't understand how Armour can help with the pain. Can anyone

> shed some light? I had x-rays, and I do have arthritis. I'm

> thrilled, but I just want to understand why and how Armour helps

> with my arthritis pain and plantar fascitis.

>

> Thanks guys! Sheila

>

January 28, 2004

I used to cross country falling alot, but then I hurt my knee - country line

dancing, of all things. After the surgery, (yes, I did it up big time) my ortho

doc suggested (okay maybe insisted would be better) that I not do such things

that would cause me to injure that knee again. Since then arthritis (osteo

variety) decided to visit and liked it so much, it never left! I've been

fortunate, so far, in that it only acts up during change of seasons and, on

occasion, when a big storm is looming - like 18 " or more total accumulation.

I hope we don't get a big one before I get this blasted cast off my hand. It

was quite a challenge trying to sweep 8 inches of that fluffy stuff off my van.

Barb

Kemal And Sheila Kalajdzic <kemalandsheila@...> wrote:

Thanks, Barb!!! Silly girl!!! You WANTED more of that white stuff???

How about we just send you all ours (not like we have a lot

though)!!!

Yesterday it was so freaking cold I froze my A_S off waiting for

buses!!! it was very windy. today we're at a whopping 18 degrees I

think!!! at least no ice!!!!

my hands were turning white yesterday with two pair of gloves on. I

need to buy one of those little heaters!!!

do you ski? Hugs, Sheila

> Hi all: Well, I've been on Armour now for 6 weeks. I haven't had a

> migraine in 7 weeks. Unbelievable!!!! Tomorrow I will stop taking

> the anti-convulsant to prevent migraines.

>

> In addition, I've been weaning myself off anti-inflammatories. I

was

> scared to go down to 1/2 tab every other day because I expected

> increased pain. After a week, however, that has not happened. So,

> I'm going to continue one more week at this pace, and then after

> that, go to 1/2 tab just twice a week and see what happens. If the

> excruiating arthritis pain doesn't show its ugly head, then I'm

> going off the stuff completely.

>

> I don't understand how Armour can help with the pain. Can anyone

> shed some light? I had x-rays, and I do have arthritis. I'm

> thrilled, but I just want to understand why and how Armour helps

> with my arthritis pain and plantar fascitis.

>

> Thanks guys! Sheila

>

July 5, 2004

Not worth the trouble.

Sanctimonious? Try looking the word up. That's one of the words I would use to

describe your behavior on this list.

The best thing you could do is leave people alone but sadly, that won't happen

because apparently part of your illness is the need to always be right. And when

someone challenges something you've said you state that you won't argue and then

proceed to do just that. And the part that really bothers me is how you come

back at the other posters.

>>Since these posts are read

by the public, I think it's dangerous for misinformation to stand

unchallenged, even in the name of " support. " <<

You might take your very own words to heart. You are not the authority on Lex or

any other SSRI and it might do you well to remember YMMV. Your opinon is just

that...your opinion. As far as I can tell you are not a doctor. And you

certainly are not an authority on anyone elses condition here.

And I cannot believe that in your five years on message boards as you claim that

I'm the first person to tell you all this. Sigh.

Barbara

> Very nice. I'm impressed with both the eloquence and the startling

> brevity of this one (although not nearly as impressed as you are).

>

> I didn't read your post all the way through because I got bored and I

> have an allergy to sanctimonious posturing. Shall we say that that's

> that's my illness?

>

> Can we take this off-line now? No one else is interested; I'm barely

> interested myself. Write to me privately if you must. No hurry.

>

> > > > > > why does it seem like you are arguing with me? I

> > > don't

> > > > > > understand the point of it. I have had two drs tell me that

> > > > > > serotonin resides in your head and your gut -but that the

> > > majority

> > > > > of

> > > > > > it is in your digestive system. I agree that a lot of

> people

> > > seem

> > > > > to

> > > > > > have no problems on anti-depressants -however I know just as

> > > many

> > > > > > people who have had problems on them. Maybe they don't all

> > > feel

> > > > > > nauseated, but just about every single person has felt at

> least

> > > > > > something. We can go back and forth quoting studies or

> > > internet

> > > > > > research but the truth is that I have been nauseous from

> every

> > > anti-

> > > > > > depressant I have tried and I find it hard to believe that

> > > there

> > > > > will

> > > > > > be one miracle drug out there that won't make me sick. I

> guess

> > > > > I'll

> > > > > > just leave it at that and stop looking for support from this

> > > list.

> > > > > > Thanks anyway -Charisse

> > > > >

July 5, 2004

Oh my gosh you guys, cut it out! I'm here for some support and to feel better.

Please start acting like adults and try to help people or get off the list!

I've never quite seen anything like this. Do you really think that the people

that are suffering with GAD enjoy reading your posts? NOT! So please, go

elsewhere and e-mail eachother. Thank you. I look forward to more positive

posts.

Deb

Barbara

> Very nice. I'm impressed with both the eloquence and the startling

> brevity of this one (although not nearly as impressed as you are).

>

> I didn't read your post all the way through because I got bored and I

> have an allergy to sanctimonious posturing. Shall we say that that's

> that's my illness?

>

> Can we take this off-line now? No one else is interested; I'm barely

> interested myself. Write to me privately if you must. No hurry.

>

> > > > > > why does it seem like you are arguing with me? I

> > > don't

> > > > > > understand the point of it. I have had two drs tell me that

> > > > > > serotonin resides in your head and your gut -but that the

> > > majority

> > > > > of

> > > > > > it is in your digestive system. I agree that a lot of

> people

> > > seem

> > > > > to

> > > > > > have no problems on anti-depressants -however I know just as

> > > many

> > > > > > people who have had problems on them. Maybe they don't all

> > > feel

> > > > > > nauseated, but just about every single person has felt at

> least

> > > > > > something. We can go back and forth quoting studies or

> > > internet

> > > > > > research but the truth is that I have been nauseous from

> every

> > > anti-

> > > > > > depressant I have tried and I find it hard to believe that

> > > there

> > > > > will

> > > > > > be one miracle drug out there that won't make me sick. I

> guess

> > > > > I'll

> > > > > > just leave it at that and stop looking for support from this

> > > list.

> > > > > > Thanks anyway -Charisse

> > > > >

August 30, 2004

Your right Barbara... I mean its still more than Ive lost in 2 weeks before

right? I just wanted to hear from other people that had the same experience.. I

didnt want to be the only one!!! ;o) Thanks for your words of encouragment...

I cant put up my scales either... That is so hard for me to do...

Taryn

Barbara <bebarb00@...> wrote:

Hi Taryn,

I only lost a total of 15 pounds the first month after my surgery,

6-16-04 in FL, and another 15 the second month. So far this month, I

have lost 9. I was concerned about the seemingly low weight loss,

but Dr. H put it this way, " If you lose 15 pounds per month for 10

months, that's still 150 pounds however you got there! " Try to relax

a little and give your body time to adjust to the many changes it is

going through. If you are doing the right things, i.e. protein

intake is good, taking all your supplements, meds and citrucel,

hydration is good, etc., the weight will come off. Even when I don't

see the scale change--and yes, I can't resist weighing every morning--

I remind myself that this is a marathon, not a sprint! Take care and

blessings to you......

Barbara in Lake Wales, FL

6-16-04

283/244

Dr. H and Dr. Raj

> I am a little over a year out- and just to give you an idea of what

I

> usually eat-

>

> 1/2 a bagel w/cream cheese for breakfast

> 1/2 a sandwich for lunch- then I save the rest for an afternoon

snack- with

> 1/2 a small bag of chips

> sometimes some cookies for dessert or a snack

> sometimes a fruit cup for a snack

> last night for dinner I went to Champs and had 1/2 a turkey

sandwich with a

> bowl of onion soup- I managed to eat the whole thing- taking 45 min

to an

> hour-

> Last night I had some cheese and crackers for a snack

> Sometimes I will also have a bowl of strawberries with whipped

cream-but

> last night I did have a snickers ice cream bar.

>

> I do snack a lot- but I have never been one to eat big meals- I

have always

> been a nibbler- so this surgery works okay for me in that respect.

I do have

> a sweet tooth- it is more manageable since the surgery- but if I

want

> something I have it. I still need to lose about 10lbs which I would

probably

> lose with an increase in exercise and a decrease in carbs.

>

> I have found that somethings I can eat more of than others. But it

also

> depends on if I am drinking something and what else I may have

eaten already

> that day.

>

> I have found that I can have greater quantities of seafood than

beef or

> chicken. But I am able to eat a variety of foods. It took a long

time for a

> hamburger to not feel like it was rocks in my stomach- sometimes it

still

> does- but it is getting better. I usually will have a hot dog when

I go to a

> cook out because that goes down easier than a hamburger.

>

> I remember after my surgery I was curious what people were eating-

my diet

> has evolved over the past year- as yours will too. You will find

that

> somethings work better for you than others- it was a while before I

could

> eat eggs- they went right thru me- but now it is fine- so your

stomach will

> change and tolerate more as time goes by-

>

> hang in there

>

> Dr. R. 7-1-03

> 222/143/130

>

> >From: " Dena Lamont "

> >Reply-

> >To:

> >Subject: Re: How much should I be eating??

> >Date: Mon, 30 Aug 2004 09:26:50 -0400

> >

> >Hi Anne,

> >

> >I find that I can eat a lot of certain things and very little of

others as

> >well.

> >

> >I can eat a good amount of salad, 2 COBBS OF CORN!, mashed

potatoes, canned

> >corned beef hash, sheppards pie, but when it comes to meat like

hamburgers,

> >chicken, pork, or any bread item, pasta, I cannot eat much at all,

it's not

> >that I feel full, but my stomach does not feel right. Believe me,

if you

> >eat too fast you will know, the excess food will catch up with

you. I did

> >that once with mac and cheese and felt sick for about 2 hours! If

you

> >think that you are eating too fast you may be though, try chewing

longer, I

> >still have a real problem with that...

> >

> >Dena

> >Dr. R & Dr. D

> >Bay City, MI

> >June 30, 2004

> >385/325

> >

> > How much should I be eating??

> >

> > I had my surgery June 10. I feel like I'm maybe eating too much. I

> > read some posts that make me feel like some people can only eat a

> > few bite at a time. Sometimes it feels like I can eat alot....and

> > maybe it's dependent on what I'm eating. If I'm eating something

> > like chicken, a few bites fill me up. If I'm eating cottage

cheese,

> > I can eat about 1/2 cup and about 4 slices of peaches. I'm sure I

> > eat too fast, cause it doesn't take me but a few minutes to eat

> > that. I'd like to hear from others a " run down " on what you eat

for

> > certain meals.

> > Anne

> > 6/10/04

> > Dr. Dasher

> > 239/202

> >

November 30, 2004

Barbara,

I am very sorry for your loss (((hugs)))

Dana Rose

> There is no such thing as a 24 hour stomach virus. If a person has

those

> symptoms they are from food poisoning and not a virus. ;-)

>

> I would have been a RN. My late husband committed suicide the end

of my next

> to last year of school. As you can imagine it was devastating. I

don't

> remember the last semester other than for 2 or 3 specific memories.

That was

> a fairly long time ago. He died in '92.

>

> Sadly, your friend sounds as if this is a big problem for her. She

may need

> some help too.

>

> Starving herself will not prevent the virus from taking hold. Think

of it

> this way, anything that would lower ones resistance in any way is

something

> to avoid. For instance, while going out in the rain and getting a

chill will

> not cause you to catch cold (only a virus can do that) catching a

chill does

> lower ones resistance a bit allowing a virus that one has been

exposed to to

> possibly get a toehold.

>

> Barbara

>

> Re: Alison Question

>

> >

> > You are correct Terry. Just talking to someone, without them

having

> > sneezed

> > or coughed or having touched anything the other person is likely

to touch,

> > will not make them sick.

> >

> > And that comes from RN school

> > Are you a nurse Barbara? I was a nurse's aide for almost 10

years, forgot

> > everything I learned. LOL She has a fear of germs REAL bad. I

feel so bad.

> > I fear emetophobia but not germs. She has scoured the webs about

stomach

> > viruses/Norwalk virus/Influenza. She is now in like a panic~mode

about

> > catching what this person had. If anything. This person had

lunchmeat left

> > over from a funeral buffet on Sunday she brought home. She felt

sick

> > shortly after eating, woke during the night like she wanted to

vomit, then

> > had diahrrea a few times, then sat up trying to burp to make

herself sick,

> > nothing. By this morning she had toast and coffee and wa

sperfectly fine.

> > I tried t tell my friend that being 4 or 5 feet away, for 30

seconds, not

> > going in her home, you are 99 /34% sure of not catching anything

if she

> > had anything. I feel so bad for me, she is way worse than me.

Now, because

> > the stomach virus has an incubation period from 12~36 hrs (or 48

hrs. I

> > learned all this from her) she will starve h

> >

November 30, 2004

Thank you, Dana Rose. :-)

Re: Alison Question

>>

>> >

>> > You are correct Terry. Just talking to someone, without them

> having

>> > sneezed

>> > or coughed or having touched anything the other person is likely

> to touch,

>> > will not make them sick.

>> >

>> > And that comes from RN school

>> > Are you a nurse Barbara? I was a nurse's aide for almost 10

> years, forgot

>> > everything I learned. LOL She has a fear of germs REAL bad. I

> feel so bad.

>> > I fear emetophobia but not germs. She has scoured the webs about

> stomach

>> > viruses/Norwalk virus/Influenza. She is now in like a panic~mode

> about

>> > catching what this person had. If anything. This person had

> lunchmeat left

>> > over from a funeral buffet on Sunday she brought home. She felt

> sick

>> > shortly after eating, woke during the night like she wanted to

> vomit, then

>> > had diahrrea a few times, then sat up trying to burp to make

> herself sick,

>> > nothing. By this morning she had toast and coffee and wa

> sperfectly fine.

>> > I tried t tell my friend that being 4 or 5 feet away, for 30

> seconds, not

>> > going in her home, you are 99 /34% sure of not catching anything

> if she

>> > had anything. I feel so bad for me, she is way worse than me.

> Now, because

>> > the stomach virus has an incubation period from 12~36 hrs (or 48

> hrs. I

>> > learned all this from her) she will starve h

>> >

January 19, 2005

> Welcome! Lots of new folks recently! We are glad to have you

all. Sorry

> I'm posting so much, but I'm in a chatty mood! LOL

>

> Anyway, welcome, Barbara. It is very possible that the pain you

are experiencing is " spasms " in your E, not reflux. Or, possibly a

combo of the 2. If the Proton-pump inhibitors are not helping,

perhaps that is why. there are lots of ideas for treating spasms

here (I just posted a few a few posts back). Cindi in PA

thank you for the info,do you mean i should have two differant

tablets when i get the spasm and reflux barbara

January 24, 2005

Hi Barbara, My 6 yr old grandson had his 1st ctoma surgery at 4 1/2 yrs old..a 2nd surgery at 5 1/2 and is getting ready to have his 3rd on 2/23/05. I'm not telling you this to scare you..hopefully to help you get answers faster than we did. We had the best ENT specialist in Memphis do the 1st 2 surgeries but we went ballistic when he said it had come back again. So we have been doing a lot of research for doctors, hospitals, answers, etc... We are very optimistic FINALLY with the new doctor and his credentials and reputation.. He is an otologist/professor and ctoma researcher at Children's Hosp at Vanderbilt.. My daughter and I know exactly what you must be going through..our boys the same age and ctoma size in left ear... Hang in there, but don't give up searching for the best you can find. We just recently found this ctoma group web site and it seems to have an awful lot of wonderful people with lots of answers and advice.. We're here if you need to talk about it...

Kitty

-- Re: New Member

Welcome Barbara,

Our son has just seen his otologist on the 7th Jan, he has a C/toma in his left ear and my wife and I were horrified, its good to read all the success stories on here which gives us some comfort, we know he has got to have the operation and we are glad this group is here.

& (UK)

New Member

Hi, my name is Barbara. I'm new to this whole group/chat thing and I'm not real computer savvy, so please be patient, I'll get it figured out!My 4 year old son just had his first surgery to remove a large ctoma so I'm trying to get info any way that I can. This looked like a good way to start. I am amazed at how many people have ctoma's. I had never heard of it before, I was freaked out at first, I thought my son had some rare disease that no one knew about. I am glad to see support for this condition.

January 25, 2005

Kitty

Do you mind sharing the name of the Dr you used in Memphis and Nashville. We are from the same area and ours too has come back

New Member

Hi, my name is Barbara. I'm new to this whole group/chat thing and I'm not real computer savvy, so please be patient, I'll get it figured out!My 4 year old son just had his first surgery to remove a large ctoma so I'm trying to get info any way that I can. This looked like a good way to start. I am amazed at how many people have ctoma's. I had never heard of it before, I was freaked out at first, I thought my son had some rare disease that no one knew about. I am glad to see support for this condition.

May 11, 2005

In a message dated 5/10/2005 2:14:34 P.M. Eastern Standard Time,

bjarrett@... writes:

Effexor has been the med I was looking for. For others it's no good. But for

me it gave me myself and my life back. There's no other way to put it. No

sides anymore and I feel great!

Barbara

Barbara,

I have been thinking of switching to Effexor myself. I did have good

results with the Lex, but did have some weight gain. Did you experience any

weight gain on either Lex or Effexor? Thanks so much.

Margaret

June 13, 2006

Hi, Carol,

I've been thinking about your questions for a couple days, and I don't have definite answers for some of them. But first, I'll tell you what I know about that legislation you asked about. This is from the May 28 issue of the Boston Globe: "In response to Skotko's studies, US Senators Kennedy of MA and Sam Brownback of Kansas have introduced a bill that would require doctors to provide current medical information about conditions like DS and referrals to support services.... The medical information legislation is now before the Senate Committee on Health, Education, Labor and Pensions." If you read 's biography on his website, you will see he is not only a medical doctor but also a graduate of Harvard's JFK School of Government. So, I would say he's the man to get legislation passed concerning DS. He seems to have a real passion for helping our kids. (he has a sister with DS) It would be great to hear from him occasionally on the lists, but I assume he will probably work with the NDSC and NDSS for his projects and research. You would all like him-- very charming, and just like one of my own sons. (I have three older boys-- almost 26, 23 and 21)

Yes, Mark is going to be a senior. I can hardly believe it. I can't think of anything I would have done differently. There were a few times I considered homeschool, but I didn't do it. I wanted him to have lots of social experiences with people, and I didn't know any local homeschool groups. He has had many experiences with people at school, most have been positive, and I think this has benefitted him. I always worked on homework at home with him, and we try to do other things that expand his knowledge of the world. He loves trips-- I think he would be happy to spend the rest of his life traveling all over the world. We spent a few days in Boston recently and he is so interested in the cultural diversity you only find in big cities. When he was younger I wondered if we would be "limited" in our lives because of Mark. Hardly! We have done more things because of him. Mark and I love to plan trips we want to take all over the country-- mostly getting ideas from books we read together, or movies (like National Treasure). He really would like to see Italy, since his grandmother told him about his Italian greatgrandparents.

I read about all the younger kids who have eating problems-- well, wait until your kids get older! Mark loves new restaurants and will try almost everything. He loved mussels with garlic butter in Plymouth, MA. He likes anything in Thai restaurants... And this boy wouldn't eat much variety at all when he was younger. So, have hope for the kids who have food issues! It's fun having an older child with DS-- much easier, I think, than when they are younger.

Carol asked about hurdles at school. Well, I have had the attitude that school is not a child's whole life, it's just a small part of it. I think our kids' family life is much, much more important. So, I have tried not to let school be a huge issue for us. What he didn't learn at school, I help him with at home. When school starts in the fall he's going to be in school in the morning, and do work training in the afternoon at a place that does recycling for industries in our area. (Honda is one of the largest here in middle Ohio.) So, Mark is kind of excited that he's going to be working for Honda. I don't know what he'll be doing in the next few years, we are just taking one small step at a time. (just as we have for the past 18 years)

Barbara

I really learned a lot from you and Dr Jim regarding speech. :-) is continuing to improve at a slow but steady pace. We do use sign still and she has gotten so good at it she now signs one handed for almost ALL of them.. I have a real hard time trying to keep up with her. I am glad to hear this will continue on. She always talks as she signs and her articulation is coming along. Many times now I can understand with out seeing her sign. She has started to tell long stories about things too.. some of which I understand. I typically can get the gist.

I feel bad that her language skills are so much better then her ability to communicate them to us.

I didn't realize who was till I went to his site! I do remember seeing his interview on Good Morning America and the legislation- did that pass?- he is fantastic and I agree, what and asset to the medical community.

It would be great having him on the list if he wanted to join.

So now that Mark is a senior!!!! Looking back, do you see anythings you have done differently knowing some of the things you know now?

What have been his hurdles for school? And what do you think he is going to do for a job after school? Is he going to be in school for another couple of years for job training?

--Carol in IL

-------------- Original message -------------- From: "bmitchell" <bmitchell@...>

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June 15, 2006

Thank you so much for the response Barbara.

Even though it may seem ordinary to you, it's all very encouraging to me and helps me navigate life to hear such things. :-)

I like your approach to school and this has been mine as well. I take what she learns at school 'as frosting on the cake' but not really 'the cake'. I really feel that is my responsibility and I too like school for the social interactions and peer modeling for her.

That is one thing I can't give her at a home as well as school can.

Thinking this way helps reduce the pressure on myself as far trying to get the school to do what they should. I hope that makes sense, not sure I am explaining it well.

That will really be the day eats something new( that does not look like a dessert ) with out coaxing.... and we to do many more things BECAUSE of . That may be something parents of very young/sick kids may not believe at the moment and will be happy to hear. She loves to go places too, but eat while out???? Haven't managed that yet. We are going to MN this week and this is the first time we have traveled any distance with her. Should be very interesting... esp how long it takes before she EATS something!!

seems like a really nice regular kind of guy who just has mission and knows how to accomplish to it and has the natural skills to pull it off too. I am guessing he is going to play a big role in advocacy for the people with developmental disabilities in the very near future.. look at what he has already accomplished along with being in school!!!

Hopefully one day he will have time to be on one of more of the DS groups.

--Carol in IL

--------- Barbara

I really learned a lot from you and Dr Jim regarding speech. :-) is continuing to improve at a slow but steady pace. We do use sign still and she has gotten so good at it she now signs one handed for almost ALL of them.. I have a real hard time trying to keep up with her. I am glad to hear this will continue on. She always talks as she signs and her articulation is coming along. Many times now I can understand with out seeing her sign. She has started to tell long stories about things too.. some of which I understand. I typically can get the gist.

I feel bad that her language skills are so much better then her ability to communicate them to us.

I didn't realize who was till I went to his site! I do remember seeing his interview on Good Morning America and the legislation- did that pass?- he is fantastic and I agree, what and asset to the medical community.

It would be great having him on the list if he wanted to join.

So now that Mark is a senior!!!! Looking back, do you see anythings you have done differently knowing some of the things you know now?

What have been his hurdles for school? And what do you think he is going to do for a job after school? Is he going to be in school for another couple of years for job training?

--Carol in IL

-------------- Original message -------------- From: "bmitchell" <bmitchell@...>

No virus found in this incoming message.Checked by AVG Free Edition.Version: 7.1.394 / Virus Database: 268.8.3/360 - Release Date: 6/9/2006

April 15, 2007

Thanks, I think I'll search images, I think I have an idea what you mean, but

not sure.

Have a good day also!

Barbara

tango_donetello <tango_donetello@...> wrote:

Extension exercises are what you do to keep your spine straight, when

you have ankylosing spondylitis you tend to hunch over because you

feel more comfortable in that position. Then your spine fuses together

in a hunched over formation. These exercises are to keep your spine

straight and your chest open so lungs can get air and expand the way

they are meant to. The spine fuses together with this disease as does

you rib cage we have the choice to be either fused together in a

hunched over position or fused together straight up. These exercises

help keep you straight up. I hope that helps explain. Have a really

good day!!!!!

April 15, 2007

Yikes!!!!

Are you talking about the thoracic spine? I just got the news about the

horrific condition of that part of my back and do hunch over, because it does

feel better. The only other position is over extending, meaning bringing my

shoulders together, chest out. Can wearing some kind of upper brace (soft) help

me maintain better posture? Thanks, Annie