update

[Guest guest]

Alice, thank you for sharing. I had been holding my breath (and silently

hoping for the best, again with high hopes, low expectations!) for you.

Your note is indeed welcome.

Thanks once again for all that you do for and everyone on the

listserv.

Best, Chris

On Wed, Apr 16, 2008 at 9:06 PM, Alice <alice@...> wrote:

> Hi Everyone,

>

> I know this post is probably long awaited and you probably all think

> that I've been all too quiet. I didn't want to post until I had

> something worthwhile to say.

>

> As most of you know, I went thru a lengthy process to do a revision on

> my left side due to the electrode array which was out of the cochlea.

> I'm still in the healing process having had a lot of swelling and

> nerve damage but the surgery was a success. We did activate the

> implant and I have 2 ACE programs and 2 CIS programs which I was able

> to hear and understand with. Unfortunately, there is still swelling

> which is interfering with that sound so I'm wearing a pressure bandage

> to bring down the swelling which will help make the contact better and

> give me the sound that I am so used to and love so much.

>

> Thank you all for being so caring while I've gone thru this process.

> I'll be sure to keep you updated as we go. I'm wearing this bandage

> for a month to insure the needed contact for optimum benefit from the

> new CI.

>

> I can't begin to tell you how much I appreciate the patience and

> compassion of the surgeon and audiologist. They have been wonderful

> and have given more than I would have ever expected all thru this very

> difficult process. I'm not your normal patient. I always seem to

> present problems. They continue to support me with great

> understanding of my feelings. I'm being taught patience but it's a

> great lesson and one that we all learn at some time or another. We

> expected this to be a long process so there are really no surprises.

>

> Alice

> http://www..com

>

>

>

[Guest guest]

Alice,

Its understandable the desire to share something tangible and I think

you are definitely doing well. You have a great team down there who takes

care of you. Thanks for keeping up to date and the best toyou as things

continue to improve.

*---* *---* *---* *---* *---*

Let us remove your shorts.

--sign on an electrician's truck

& Dreamer Doll ke7nwn

Newport, Oregon

N24C 8/2000 Hookup

rclark0276@...

http://webpages.charter.net/dog_guide/

[Guest guest]

Alice,

I am very happy to hear that things are going so well for you. That's

wonderful news. As for the swelling, I sincerely hope you look better

than I did after my second implant in 2001. The bandage was too tight,

and I was so drugged that I didn't realize it until the next morning.

By that time I was absolutely grotesque looking, with a badly swollen

face that sported every color of the rainbow.

I met your ENT doctor once. He struck me as a very kind and good

person in addition to being a first-rate ENT. You can't beat that

combination.

Please keep us posted on your progress.

e

[Guest guest]

Thank you Alice for updating us all.

I am so grateful that you have a wonderful understanding and compassionate

surgeon and audiologist who helped you get through the rough times.

I hope the swelling will go down pronto so you can hear better and the BTE be

more comfortable on your ear.

Please do keep us all update. You are our rocks and helped us get through our

tough times so now it is our turn to help YOU!

Big FINS HUGS coming your way.

Dolly Dolphin

[Guest guest]

Hi Alice:

Thanks so much for the update! I'm so very glad to learn that the

surgery was a success. I hope everything continues to improve for

you.

Rhona

cause of hearing loss unknown

Cochlear Awareness Network Advocate

4/3/07 Surgery, left ear Nucleus Freedom

5/8/07 Activated

Univ of Miami

Dr. Balkany

>

> Hi Everyone,

>

> I know this post is probably long awaited and you probably all think

> that I've been all too quiet. I didn't want to post until I had

> something worthwhile to say.

>

> As most of you know, I went thru a lengthy process to do a revision

on

> my left side due to the electrode array which was out of the

cochlea.

> I'm still in the healing process having had a lot of swelling and

> nerve damage but the surgery was a success. We did activate the

> implant and I have 2 ACE programs and 2 CIS programs which I was

able

> to hear and understand with. Unfortunately, there is still swelling

> which is interfering with that sound so I'm wearing a pressure

bandage

> to bring down the swelling which will help make the contact better

and

> give me the sound that I am so used to and love so much.

>

> Thank you all for being so caring while I've gone thru this

process.

> I'll be sure to keep you updated as we go. I'm wearing this bandage

> for a month to insure the needed contact for optimum benefit from

the

> new CI.

>

> I can't begin to tell you how much I appreciate the patience and

> compassion of the surgeon and audiologist. They have been wonderful

> and have given more than I would have ever expected all thru this

very

> difficult process. I'm not your normal patient. I always seem to

> present problems. They continue to support me with great

> understanding of my feelings. I'm being taught patience but it's a

> great lesson and one that we all learn at some time or another. We

> expected this to be a long process so there are really no surprises.

>

> Alice

> http://www..com

>

[Guest guest]

Hi ! Great to hear from you. You and I are exactly the same weight now.

As to your comment about carbs, sugar, and dumping, I have to say that I was the

same way for a long time, but lately I've seeing some " carb creep. " I even ate a

bagel the other day, which I would NEVER have been able to do a year ago. I'm

not really happy at this development, let me tell you!

Sorry I missed the picnic, but I've got next year's on my calendar already. Hope

to see you then, if not before.

:-) Kathy in VA

7/6/06

297/152

-------------- Original message --------------

From: " dimndznprlz01 " <teacher4la@...>

Hi, it was nice to see everyone at the picnic. I missed those of you

that were not there though. It was nice to see Dr. R and have him

explain to me in a few simple sentences things that I had been

wondering about for a long time. For one, I am so excited to be fit

and healthy that I have decided to become a personal trainer. But

after I ran my last 5 mile race, my foot just hasn't been the same.

Dr. R reminded me that even though I do not look much like my former

self, I still have the joints and cartilege of a heavy person. I was

over 300 lbs for probably 10 years of my life. As much as I want to

shut the door on all those sedentary years, they and the damage I

have already done are a part of me.

Plus I asked about why I get so dizzy and crappy feeling after I eat

processed sugar and flour. He said I was dumping. I was confused

since just a little muffin or bit of dessert will do it to me. He

explained that I just can't eat those things again and I will be ok.

It's hard, but I had kind of figured it out already. It isn't

like " darn, I slipped up on my diet. " It is " ohhh, I'm going to pay

for this for the rest of the day! " Well at least I have more info.

I was wondering if I was having diabetic issues.

I hate not being able to run or play tennis. My injured foot has me

beholden to it. It turns out I have an extra bone in my foot so some

orthotics and pt may be enough to get me back on the road.

One great thing I've done since then is start monitoring my

calories. I had only been losing a pound a month for the last 3 or 4

months. This is with playing tennis 3 times a weeks and jogging

between 5 and 10 miles also. Well I googles calorie counters and got

myself set up with a free program. I was just going to track my food

to see where I was at. Honestly I didn't know if I was too little or

too many calories. Well the first day I logged over 3,000 cals. I

was shocked!! I have always felt that I have eaten pretty well. Some

of my food choices were pretty calorie dense though. I have brought

my calories down to around 2,000, depending on my activity level (or

not) and have lost 6 lbs in 2 weeks. Yeah!! I'm not done losing

weight! I've been so worried that 21 months out, I was done. Sure,

I didn't get the Mgb to diet, but with some smarter food choices, I

still eat very well. I would like to get to 150 lbs and see how that

works for me. I know my foot and joints would appreciate packing a

lighter load too.I am now down 152 lbs and trying to diversify my

activities with yoga and spinning classes. Things are going well for

me and I still am glad I made the choice for the MGB.

in Or

Dr. R

7/06/06

7 ft

25 min

338/186/150

[Guest guest]

Alice,

Thank you so much for the update. I've thought of you often and hoped that

everything would work out well for you with your revision surgery. I'm so

happy that you are able to hear and understand. Best wishes for continued

healing and improvement.

Lynn

Fairhope, AL

Nucleus Freedom

Surgery date 9/6/06

Activation date 9/27/06

Update

Hi Everyone,

I know this post is probably long awaited and you probably all think that

I've been all too quiet. I didn't want to post until I had something

worthwhile to say.

As most of you know, I went thru a lengthy process to do a revision on my

left side due to the electrode array which was out of the cochlea.

I'm still in the healing process having had a lot of swelling and nerve

damage but the surgery was a success. We did activate the implant and I

have 2 ACE programs and 2 CIS programs which I was able to hear and

understand with. Unfortunately, there is still swelling which is

interfering with that sound so I'm wearing a pressure bandage to bring down

the swelling which will help make the contact better and give me the sound

that I am so used to and love so much.

Thank you all for being so caring while I've gone thru this process.

I'll be sure to keep you updated as we go. I'm wearing this bandage for a

month to insure the needed contact for optimum benefit from the new CI.

I can't begin to tell you how much I appreciate the patience and compassion

of the surgeon and audiologist. They have been wonderful and have given

more than I would have ever expected all thru this very difficult process.

I'm not your normal patient. I always seem to present problems. They

continue to support me with great understanding of my feelings. I'm being

taught patience but it's a great lesson and one that we all learn at some

time or another. We expected this to be a long process so there are really

no surprises.

Alice

http://www..com

[Guest guest]

It's good to hear from you, Alice. I hope that the pressure bandage does

the trick. As it happens, when one has abdominal surgery, for any number of

reasons, sometimes the same thing happens and pressure garments must be worn to

allow the skin to heal to it's inner layers. This actually happened to me

after a hernia repair reopened itself. So, hopefully - this principle will

work in your ear case, too! I'll be praying for you, as always, because nobody

deserves a good outcome more! ) Jackie

**************Need a new ride? Check out the largest site for U.S. used car

listings at AOL Autos.

(http://autos.aol.com/used?NCID=aolcmp00300000002851)

[Guest guest]

Hi Alice,

Good news is always worth the wait! So very glad things are coming

along well for you. Remember, baby steps! You've been in my

thoughts.

Continued good healing to you!

Patti

[Guest guest]

YEAH ALICE - YOU GO GIRL!!!!

Glad to hear that you can HEAR. The bandage will just be part of your

charm, think of it as a Turban and be style setter for Spring. Toss a

few silk flowers in it. I had a rose for mine when I was first

implanted. Tucked it right in the bandage. Told people I had a brain

transplant. Being a natural blonde, of course, they believed me.

SO HAPPY for you. Thanks for sharing the good news. If you stop

standing on your head, the swelling will go down faster, methinks.

[Guest guest]

Hello Alice

Thanks for the update. I'm sorry that you havent healed properly yet,

but very pleased that you can hear OK with the new CI. Did you get

the Freedom with this re-implant?

Ted F.

>

> Hi Everyone,

>

> I know this post is probably long awaited and you probably all think

> that I've been all too quiet. I didn't want to post until I had

> something worthwhile to say.

>

> As most of you know, I went thru a lengthy process to do a revision

on

> my left side due to the electrode array which was out of the

cochlea.

> I'm still in the healing process having had a lot of swelling and

> nerve damage but the surgery was a success. We did activate the

> implant and I have 2 ACE programs and 2 CIS programs which I was

able

> to hear and understand with. Unfortunately, there is still swelling

> which is interfering with that sound so I'm wearing a pressure

bandage

> to bring down the swelling which will help make the contact better

and

> give me the sound that I am so used to and love so much.

>

> Thank you all for being so caring while I've gone thru this

process.

> I'll be sure to keep you updated as we go. I'm wearing this bandage

> for a month to insure the needed contact for optimum benefit from

the

> new CI.

>

> I can't begin to tell you how much I appreciate the patience and

> compassion of the surgeon and audiologist. They have been wonderful

> and have given more than I would have ever expected all thru this

very

> difficult process. I'm not your normal patient. I always seem to

> present problems. They continue to support me with great

> understanding of my feelings. I'm being taught patience but it's a

> great lesson and one that we all learn at some time or another. We

> expected this to be a long process so there are really no surprises.

>

> Alice

> http://www..com

>

[Guest guest]

Hi Alice,

It's been a while since I've posted and so glad to see your new CI is

coming along very well for you! It's easy to see you are thrilled with

the results and best wishes for your continued success with hearing!

Dixie

[Guest guest]

hi alice...sooooo happy to hear that things are coming along well for you; i

have been thinking about you and praying for success with the new

implant...sometimes we have to go through the bad stuff to get to the good

stuff, but in the end it's all worth the wait!?? i wish you only good stuff from

now on!??

cindy floyd

[Guest guest]

bumping

>

> Hi Everyone

>

> Just wanted to let you know how things are going. I am now on 75 mcg

> T4 and 20 mcg T3 and have been for 6 weeks, I have just had a blood

> test today ready for my follow up withn endo next week, haven't taken

> meds since Tuesday evening. My Ferritin 3 weeks ago had reached 46 so

> I am very pleased about that as I have been taking 200mg ferrous

> sulphate twice a day. I am feeling a little better although I still

> have knee stiffness especially when getting up from sitting or going

> up and down the stairs. My thigh cramps come and go but I don't think

> they are quite as bad as they were. I am tired at times but not

> excessively. I have been tracking my temp and my basal temp has been

> 36.5 - 36.6 in the first few days of my cycle. I have also been

> tracking them during the day and they seem to be ranging from 36.7 to

> 36.9. Does anyone know whether this would indicate still not quite

> there with the meds. My last blood test 3 weeks ago, but had taken

> meds was T4 10 T3 6.4 and TSH 0.12. I have also noticed probably for a

> couple of months that one of my eyes just below the eyebrow so on the

> browbone is quite swollen and puffy and stings when I rub any cream

> onto it the other eye could be very slightly swollen but not sore - do

> you think this could be thyroid or not connected. I would welcome your

> thoughts as i need to gear myself up for my appointment with endo and

> wanted to know what I should be asking for really.

> Many thanks, much love Lizzie

>

[Guest guest]

Hi Lizzie

Sorry not to have responded to your message. It will be interesting to

see what these latest blood results produce, especially as you didn't

have your meds for a couple of days before having your blood drawn. Keep

on with your Ferrous Sulphate, it takes quite a while to build up to

around 70 (at least) and then you should really be feeling loads better.

Do you know if your GP tested to see where your Free T3 is - I know he

tested it last time but you had taken your T3 on that day. It really is

important to know this to tell whether you actually ARE converting the

T4 to the T3. Report in as soon as you get your results. I am only

saying this because it is often a lack of T3 that causes pains,

stiffness and cramps. You might be a candidate for the addition of T3 in

some form, though we will wait and see when you get onto a higher dose

of L-thyroxine how you get on, as 75 mcgs is still a small dose.

Not sure about the puffiness under your eyebrow - because you say this

is sore. You DO get puffiness around your eyes with hypothyroidism, but

not heard about this sort of puffiness being sore. Perhaps somebody else

can help you here.

Write down everything you want to talk to your endo about - list all

your questions, and if possible, take somebody with you. Somebody else

there does make a difference to the way many doctors will treat you.

Luv - Sheila

> > Just wanted to let you know how things are going. I am now on 75 mcg

> > T4 and 20 mcg T3 and have been for 6 weeks, I have just had a blood

> > test today ready for my follow up withn endo next week, haven't

taken

> > meds since Tuesday evening. My Ferritin 3 weeks ago had reached 46

so

> > I am very pleased about that as I have been taking 200mg ferrous

> > sulphate twice a day. I am feeling a little better although I still

> > have knee stiffness especially when getting up from sitting or going

> > up and down the stairs. My thigh cramps come and go but I don't

think

> > they are quite as bad as they were. I am tired at times but not

> > excessively. I have been tracking my temp and my basal temp has been

> > 36.5 - 36.6 in the first few days of my cycle. I have also been

> > tracking them during the day and they seem to be ranging from 36.7

to

> > 36.9. Does anyone know whether this would indicate still not quite

> > there with the meds. My last blood test 3 weeks ago, but had taken

> > meds was T4 10 T3 6.4 and TSH 0.12. I have also noticed probably for

a

> > couple of months that one of my eyes just below the eyebrow so on

the

> > browbone is quite swollen and puffy and stings when I rub any cream

> > onto it the other eye could be very slightly swollen but not sore -

do

> > you think this could be thyroid or not connected. I would welcome

your

> > thoughts as i need to gear myself up for my appointment with endo

and

> > wanted to know what I should be asking for really.

> > Many thanks, much love Lizzie

> >

>

[Guest guest]

Hi Sheila

Sorry I am taking 20mcg of T3 daily along with the 75 mcg T4, it is Dr

B himself who has requested the bloods prior to my appt next week. He

has asked for TFT'T and T3. I'm not sure whether it is the T4 causing

the cramps and stiffness or lack of it, so I am unsure what to push

for at my appt.

Love Lizzie

>

> > > Just wanted to let you know how things are going. I am now on 75 mcg

> > > T4 and 20 mcg T3 and have been for 6 weeks, I have just had a blood

> > > test today ready for my follow up withn endo next week, haven't

> taken

> > > meds since Tuesday evening. My Ferritin 3 weeks ago had reached 46

> so

> > > I am very pleased about that as I have been taking 200mg ferrous

> > > sulphate twice a day. I am feeling a little better although I still

> > > have knee stiffness especially when getting up from sitting or going

> > > up and down the stairs. My thigh cramps come and go but I don't

> think

> > > they are quite as bad as they were. I am tired at times but not

> > > excessively. I have been tracking my temp and my basal temp has been

> > > 36.5 - 36.6 in the first few days of my cycle. I have also been

> > > tracking them during the day and they seem to be ranging from 36.7

> to

> > > 36.9. Does anyone know whether this would indicate still not quite

> > > there with the meds. My last blood test 3 weeks ago, but had taken

> > > meds was T4 10 T3 6.4 and TSH 0.12. I have also noticed probably for

> a

> > > couple of months that one of my eyes just below the eyebrow so on

> the

> > > browbone is quite swollen and puffy and stings when I rub any cream

> > > onto it the other eye could be very slightly swollen but not sore -

> do

> > > you think this could be thyroid or not connected. I would welcome

> your

> > > thoughts as i need to gear myself up for my appointment with endo

> and

> > > wanted to know what I should be asking for really.

> > > Many thanks, much love Lizzie

> > >

> >

>

[Guest guest]

Well - make sure you don't have any thyroid hormone for at least 24 hours before the test. You seem to have a problem with your T3 - even though you are taking extra. Wait and see what your new tests show and then we will have more idea. I doubt it is the T4 causing your stiffness and pain, more likely to be the fact that it isn't converting through your liver to T3. There are other things that could be stopping your T3 from getting utilized by the body - see Associated Conditions under Hypothyroidism on our website www.tpa-uk.org.uk Lizzie. Did you also read the Mercury Thyroid Conneciton paper in the files?.

Have you had your ferritin tested - I believe Dr B does do this as a matter of course?

luv - Sheila

Re: Update

Hi SheilaSorry I am taking 20mcg of T3 daily along with the 75 mcg T4, it is DrB himself who has requested the bloods prior to my appt next week. Hehas asked for TFT'T and T3. I'm not sure whether it is the T4 causingthe cramps and stiffness or lack of it, so I am unsure what to pushfor at my appt. Love Lizzie> > > > Just wanted to let you know how things are going. I am now on 75 mcg> > > T4 and 20 mcg T3 and have been for 6 weeks, I have just had a blood> > > test today ready for my follow up withn endo next week, haven't> taken> > > meds since Tuesday evening. My Ferritin 3 weeks ago had reached 46> so> > > I am very pleased about that as I have been taking 200mg ferrous> > > sulphate twice a day. I am feeling a little better although I still> > > have knee stiffness especially when getting up from sitting or going> > > up and down the stairs. My thigh cramps come and go but I don't> think> > > they are quite as bad as they were. I am tired at times but not> > > excessively. I have been tracking my temp and my basal temp has been> > > 36.5 - 36.6 in the first few days of my cycle. I have also been> > > tracking them during the day and they seem to be ranging from 36.7> to> > > 36.9. Does anyone know whether this would indicate still not quite> > > there with the meds. My last blood test 3 weeks ago, but had taken> > > meds was T4 10 T3 6.4 and TSH 0.12. I have also noticed probably for> a> > > couple of months that one of my eyes just below the eyebrow so on> the> > > browbone is quite swollen and puffy and stings when I rub any cream> > > onto it the other eye could be very slightly swollen but not sore -> do> > > you think this could be thyroid or not connected. I would welcome> your> > > thoughts as i need to gear myself up for my appointment with endo> and> > > wanted to know what I should be asking for really.> > > Many thanks, much love Lizzie> > >> >>

No virus found in this incoming message.Checked by AVG. Version: 7.5.524 / Virus Database: 269.22.13/1378 - Release Date: 15/04/2008 09:12

[Guest guest]

Hi Sheila

Yes my Ferritin is 46 at the moment on 200mg ferrous sulphate twice

daily. I have had the blood test done yesterday and didn't take meds

since tuesday so it should give me a better picture. Do you think with

a T4 of 10 that it is probably lack of it causing the muscle pains

even thought I take T3. It's very confusing, but I really feel I need

to have some ideas about what I should be asking Dr B to do for me. I

suspect it may be an increase in T4.

I do have some amalgum fillings but I don't even want to consider

going down that road unless absolutely necessary.

Love Lizzie

> Well - make sure you don't have any thyroid hormone for at least 24

hours before the test. You seem to have a problem with your T3 - even

though you are taking extra. Wait and see what your new tests show and

then we will have more idea. I doubt it is the T4 causing your

stiffness and pain, more likely to be the fact that it isn't

converting through your liver to T3. There are other things that could

be stopping your T3 from getting utilized by the body - see Associated

Conditions under Hypothyroidism on our website www.tpa-uk.org.uk

Lizzie. Did you also read the Mercury Thyroid Conneciton paper in the

files?.

>

> Have you had your ferritin tested - I believe Dr B does do this as a

matter of course?

>

> luv - Sheila

>

>

[Guest guest]

As you may remember Rob had severe asthma starting around age 1. It was never controlled and puzzled the docs. After he 'came down with' the JAS and started Enbrel, his lung capacity and lung function tests began to rise dramatically. So they figure that his 'asthma' all these years was actually JAS causing inflammation in his lungs. So I can very well see that their theory about you may be true. I hope that they can get you treated soon and feeling much better.

I am SO PROUD of you getting accepted to the program! And being able to save money is nice icing on the cake!! WOW~ It says a lot about your academic performance that you were accepted into not one but TWO elite programs!! What a huge accomplishment!I am so glad that you are finding happiness....you so deserve it!! and Rob 19 JAS Update > My GI doctor is once again convinced that I have chrons disease > related to the JAS. We have been battling this is it or isn't > for the last seven years but he is really thinking it is again > this time however he believes it might be contained to my small > bowel as the colonoscopy has shown really anything. His thought > is that all of our other tests done on my GI tract have been > when I was on medication for the JAS. Since I have been off the > medication for almost two years and that was around the time my > iron plummeted as well as my albumin (protein storage) that it > appears my JAS meds were taking care of my chrons if that is > what it is. So on the 27th of May I am getting the small bowel > follow through and if they cant find anything on that I have to > get the capsule endoscopy, he said that there was a third test > but we would discuss that if these two didn't confirm it (that > is just weird..who the heck knows what that means). Either way > he said there is something going on its> definitely a medical mystery but he has no doubt that it > ties in with the JAS. It just makes me wonder between the > decreased lung capacity and the possible chrons it seems that > right now if my disease is active that all its affecting is my > organs rather then my joints, although there is some swelling in > my joints its not bad. So maybe I am flaring but in a more > systemic way then a joint related way, which is possible with > JAS, just not something I have ever experienced. Anyone have any > idea about that one?> > In other super news. I got into SFSU's multiple subjects one > calander year teaching credential program. I had been planning > on going to NDNU's because I really didn't think I would get > into this program it's incredibly competitive, they only accept > 25 people out of over 150 that apply. Somehow by the grace of > God I got in! So although NDNU is a smaller school and much > prettier, it's $15,000 more expensive so I'm happy to be saving > money. Plus it's an accelerated program which means I will > finish in the same amount of time as I would have at NDNU, but > without accruing a massive amount of loans. I feel so grateful > right now and feel like I was finally given a break. After the > years I have had I just feel happy that something finally worked > out the way I wanted it to. I feel blessed and unbelievably > happy. > > So that is that. > > Love to everyone,> (JAS, 23.. with only 24 days till I graduate!!)> > > Salvucci > Behavioral Therapist > Pacific Child and Family Associates > San Mateo, CA 94402 > c: 650-302-3703> > ---------------------------------> Be a better friend, newshound, and know-it-all with > Mobile. Try it now.

[Guest guest]

my idea ~ is that you're one heck of a young lady with a great attitude. i absolutely wish you the very best... ~osh Salvucci <lsalvucci42@...> wrote: My GI doctor is once again convinced that I have chrons disease related to the

JAS. We have been battling this is it or isn't for the last seven years but he is really thinking it is again this time however he believes it might be contained to my small bowel as the colonoscopy has shown really anything. His thought is that all of our other tests done on my GI tract have been when I was on medication for the JAS. Since I have been off the medication for almost two years and that was around the time my iron plummeted as well as my albumin (protein storage) that it appears my JAS meds were taking care of my chrons if that is what it is. So on the 27th of May I am getting the small bowel follow through and if they cant find anything on that I have to get the capsule endoscopy, he said that there was a third test but we would discuss that if these two didn't confirm it (that is just weird..who the heck knows what that means). Either way he said there is something going on its definitely a medical mystery but he has no doubt that it ties in with the JAS.

It just makes me wonder between the decreased lung capacity and the possible chrons it seems that right now if my disease is active that all its affecting is my organs rather then my joints, although there is some swelling in my joints its not bad. So maybe I am flaring but in a more systemic way then a joint related way, which is possible with JAS, just not something I have ever experienced. Anyone have any idea about that one?In other super news. I got into SFSU's multiple subjects one calander year teaching credential program. I had been planning on going to NDNU's because I really didn't think I would get into this program it's incredibly competitive, they only accept 25 people out of over 150 that apply. Somehow by the grace of God I got in! So although NDNU is a smaller school and much prettier, it's $15,000 more expensive so I'm happy to be saving money. Plus it's an accelerated program which means I will finish in the same amount of time as I would have at

NDNU, but without accruing a massive amount of loans. I feel so grateful right now and feel like I was finally given a break. After the years I have had I just feel happy that something finally worked out the way I wanted it to. I feel blessed and unbelievably happy. So that is that. Love to everyone, (JAS, 23.. with only 24 days till I graduate!!) Salvucci Behavioral Therapist Pacific Child and Family Associates San Mateo, CA 94402 c: 650-302-3703 Be a better friend, newshound, and know-it-all with Mobile. Try it now.

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It's funny as strange as it sounds I really think I have the JA to thank for my motivation. Having a disease like JA, I've had to work ten times harder for everything, just attending school, getting some sort of normal. It's created an incredible drive in my life. It's made me a more grateful person, a harder worker, and given me more motivation to attain my goals because there is so much there trying to stop me. In a way JA has been a gift, I still wish I would have never gotten it but it has made me a better person. I'm incredibly proud that I got into both programs, all that hard work, staying in school when my mom was dying and when she died, it wasn't in vain I still succeeded despite all that. It feels good, really good! and Schulz <snooksmama@...> wrote: As you may remember Rob had severe asthma starting around age 1. It was never controlled and puzzled the docs. After he 'came down with' the JAS and started Enbrel, his lung capacity and lung function tests began to rise dramatically. So they figure that his 'asthma' all these years was actually JAS causing inflammation in his lungs. So I can very well see that their theory about you may be true. I hope that they can get you treated soon and feeling much better. I am SO PROUD of you getting accepted to the program! And being able to save money is nice icing on the cake!! WOW~ It says a lot about your academic performance that you were accepted into not one but TWO elite programs!! What a huge

accomplishment!I am so glad that you are finding happiness....you so deserve it!! and Rob 19 JAS Update > My GI doctor is once again convinced that I have chrons disease > related to the JAS. We have been battling this is it or isn't > for the last seven years but he is really thinking it is again > this time however he believes it might be contained to my small > bowel as the colonoscopy has shown really anything. His thought > is that all of our other tests done on my GI tract have been > when I was on medication for the JAS. Since I have been off the > medication for almost two years and that was around the time my > iron plummeted as well as my albumin (protein storage) that it > appears my

JAS meds were taking care of my chrons if that is > what it is. So on the 27th of May I am getting the small bowel > follow through and if they cant find anything on that I have to > get the capsule endoscopy, he said that there was a third test > but we would discuss that if these two didn't confirm it (that > is just weird..who the heck knows what that means). Either way > he said there is something going on its> definitely a medical mystery but he has no doubt that it > ties in with the JAS. It just makes me wonder between the > decreased lung capacity and the possible chrons it seems that > right now if my disease is active that all its affecting is my > organs rather then my joints, although there is some swelling i! n & g t; my joints its not bad. So maybe I am flaring but in a more > systemic way then a joint related way, which is possible with > JAS, just not

something I have ever experienced. Anyone have any > idea about that one?> > In other super news. I got into SFSU's multiple subjects one > calander year teaching credential program. I had been planning > on going to NDNU's because I really didn't think I would get > into this program it's incredibly competitive, they only accept > 25 people out of over 150 that apply. Somehow by the grace of > God I got in! So although NDNU is a smaller school and much > prettier, it's $15,000 more expensive so I'm happy to be saving > money. Plus it's an accelerated program which means I will > finish in the same amount of time as I would have at NDNU, but > without accruing a massive amount of loans. I feel so grateful > right now and feel like I was finally given a break. After the > years I have had I just feel happy that something finally worked > out the way I wanted it to. I

feel blessed and unbelievably > happy. > > So that is that. > > Love to everyone,> (JAS, 23.. with only 24 days till I graduate!!)> > > Salvucci > Behavioral Therapist > Pacific Child and Family Associates > San Mateo, CA 94402 > c: 650-302-3703> > ---------------------------------> Be a better friend, newshound, and know-it-all with > Mobile. Try it now. Salvucci Behavioral Therapist Pacific Child and Family Associates San Mateo, CA 94402 c: 650-302-3703

Be a better friend, newshound, and know-it-all with Mobile. Try it now.

[Guest guest]

- Congrats on your upcoming graduation and that's fantastic news about your next step in multiple subject! I'll be keeping my fingers crossed for quick and thorough answers on the other issues.... but you really are inspirational that you are letting nothing stand in your way. Your mom is so PROUD looking over you Colleen Salvucci <lsalvucci42@...> wrote: My GI doctor is once again convinced that I have chrons disease related to the JAS.

We have been battling this is it or isn't for the last seven years but he is really thinking it is again this time however he believes it might be contained to my small bowel as the colonoscopy has shown really anything. His thought is that all of our other tests done on my GI tract have been when I was on medication for the JAS. Since I have been off the medication for almost two years and that was around the time my iron plummeted as well as my albumin (protein storage) that it appears my JAS meds were taking care of my chrons if that is what it is. So on the 27th of May I am getting the small bowel follow through and if they cant find anything on that I have to get the capsule endoscopy, he said that there was a third test but we would discuss that if these two didn't confirm it (that is just weird..who the heck knows what that means). Either way he said there is something going on its definitely a medical mystery but he has no doubt that it ties in with the JAS. It

just makes me wonder between the decreased lung capacity and the possible chrons it seems that right now if my disease is active that all its affecting is my organs rather then my joints, although there is some swelling in my joints its not bad. So maybe I am flaring but in a more systemic way then a joint related way, which is possible with JAS, just not something I have ever experienced. Anyone have any idea about that one?In other super news. I got into SFSU's multiple subjects one calander year teaching credential program. I had been planning on going to NDNU's because I really didn't think I would get into this program it's incredibly competitive, they only accept 25 people out of over 150 that apply. Somehow by the grace of God I got in! So although NDNU is a smaller school and much prettier, it's $15,000 more expensive so I'm happy to be saving money. Plus it's an accelerated program which means I will finish in the same amount of time as I would have at

NDNU, but without accruing a massive amount of loans. I feel so grateful right now and feel like I was finally given a break. After the years I have had I just feel happy that something finally worked out the way I wanted it to. I feel blessed and unbelievably happy. So that is that. Love to everyone, (JAS, 23.. with only 24 days till I graduate!!) Salvucci Behavioral Therapist Pacific Child and Family Associates San Mateo, CA 94402 c: 650-302-3703 Be a better friend, newshound, and know-it-all with Mobile. Try it now.

Be a better friend, newshound, and know-it-all with Mobile. Try it now.

[Guest guest]

Thats awesome . Congrats and best of luck. I agree, with all its pitfalls and pains there is some good in JA...the lessons learned are learned through trial and tribulation but the traits left within and the rewards are tremendous.

hugs!

Donna**************Wondering what's for Dinner Tonight? Get new twists on family favorites at AOL Food. (http://food.aol.com/dinner-tonight?NCID=aolfod00030000000001)

[Guest guest]

Smiling here as it took me over 5 days before I noticed my left ear was further

away from my head. That is normal due to the swelling. The ear will come back

toward your head as soon as the swelling goes down.

Yes your face on the side of the surgery can also be little swelling and might

have yellow colour there for a week or so. Mine did and also down the neck to

the chest.

Now please continue to take it easy at home, remember not to blow your nose for

one or two months or sneeze with your mouth close.

I am glad your surgery went ok for you.

Dolly Dolphin

Update

Hello everyone,

This is my 1st post since the surgery last Friday. It went well.

Admittedly I felt nauseous the first day onto the following morning.

Started feeling a little better the following afternoon. And have felt

a little better each day.

Right now, the ear where the surgery took place is sticking out a bit.

And there's also a little swelling on my face on that side. Is that to

be expected ?

Dan

[Guest guest]

Hi Dan,

Glad to hear your surgery went well. Consider yourself very lucky if

you only have a little swelling in your face. You should have seen me

in 2001. I was really scary looking. It helps to sleep with your head

elevated right after the surgery. An ear that sticks out is normal. It

takes time for the swelling around the incision to go down.

e