update

[Guest guest]

--Hi sharon, that is awesome, great results!! I'm finally on phase

2 after waiting since begining of april..yeah! Today is my 4th (500)

cal day and I'm down 11lbs. I remeasured in my calfs and they were

already down an inch. This plan is the best! I haven't been able to

lose like this since my pregnancy believe it or not. I hope I have

great results like you. I noticed my gums were bleeding like when I

was pregnant too. Glad your still going strong. Jodie(NH)

- In , " Sharon T " <topkatsharon@...> wrote:

>

> Hi Everyone, Despite a slower weightloss this week due to dental

> problems. I've lost 25lbs since May 20th and 20 inches! Besides the

loss

> on arms, and lower legs lost a total of 6.5 inches off my waist, 4

> inches off of each thigh and 3.5 inches off of my hips! I've

noticed my

> skin is great and not dry like it usually is, so theres no need for

> moisturizer while on hcg. I 'm still pinching myself about how

great hcg

> is to lose weight and inches. I hope everyone has a great week and

keeps

> on losing! Sharon

>

[Guest guest]

Jodie ... Great for YOU!!! Isn't this stuff awesome!!!!!!!!!! That's interesting about your bleeding gums. I noticed mine bled a bit yesterday and this morning, but I thought it was because of poor dental hygiene! LOL!! (Yeah ... like that could happen to me!) Honestly, I didn't even think about it being from the hCG, but it makes sense!!! Does anyone else feel as wonderful as I do??? What an awesome sense of well-being I've got these past few days!! Maybe it's because the fat is just melting off me!!! Don't know what it is, but I'm enjoying every

minute of it!!! Debbie mrwyattguy <mrwyattguy@...> wrote: --Hi sharon, that is awesome, great results!! I'm finally on phase 2 after waiting since begining of april..yeah! Today is my 4th (500) cal day and I'm down 11lbs. I remeasured in my calfs and they were already

down an inch. This plan is the best! I haven't been able to lose like this since my pregnancy believe it or not. I hope I have great results like you. I noticed my gums were bleeding like when I was pregnant too. Glad your still going strong. Jodie(NH)- In , "Sharon T" <topkatsharon@...> wrote:>> Hi Everyone, Despite a slower weightloss this week due to dental> problems. I've lost 25lbs since May 20th and 20 inches! Besides the loss> on arms, and lower legs lost a total of 6.5 inches off my waist, 4> inches off of each thigh and 3.5 inches off of my hips! I've noticed my> skin is great and not dry like it usually is, so theres no need for> moisturizer while on hcg. I 'm still pinching myself about how great hcg> is to lose weight and inches. I hope everyone has a great week and

keeps> on losing! Sharon>

[Guest guest]

-,

it sounds like Rob has settled in nicely to the college life. Nice

that he comes home every other weekend. How is hubby coping with the

empty nest??

I hope they find some answers for you soon, you need a break too. Its

time to find the right treatment plan for our !!

hugs Helen and (10, systemic)

-- In , snooksmama@... wrote:

>

> Hello all

> I spoke to Rob today. He says he is doing good. He is working on

his ping pong game. I asked him if it hurt his chest, he was

surprised I asked!! He says he is studying lots and will come home

next weekend. So, he is coming home roughly every 2 weeks. Which is

really nice.

> My bone scan today showed I've actually gained a bit of bone mass

in my spine (hooray!) but have lost more in the femoral neck (part of

the hip joint). This is a prime area for fractures. I am to continue

on the Boniva. We talked about my disease control, or lack

thereof...and discussed Orencia and Rituxan. I haven't made a

decision yet, but the office is going to check with my insurer and

see what the cost would end up being and also what hoops we'd have to

jump through for approval.

> I know that the kiddoes are all back in school now so that is

likely why its so quiet!!

> Georgina, would love to hear how Josh is doing at college.

> , how did do with the MTX shot? I th ink I missed that

post...

> and Rob 18 Spondy

>

[Guest guest]

:

So glad Rob is adjusting to college so well. My thoughts are with you as you try and get your own arthritis under better control. Time for you to get some relief.

Keep us posted.

Beth (Hannah, 10, unspecified arthrtis; asthma; gerd; migraines)

Sending prayers & happy thoughts,

Beth :-)

Update

Hello all

I spoke to Rob today. He says he is doing good. He is working on his ping pong game. I asked him if it hurt his chest, he was surprised I asked!! He says he is studying lots and will come home next weekend. So, he is coming home roughly every 2 weeks. Which is really nice.

My bone scan today showed I've actually gained a bit of bone mass in my spine (hooray!) but have lost more in the femoral neck (part of the hip joint). This is a prime area for fractures. I am to continue on the Boniva. We talked about my disease control, or lack thereof...and discussed Orencia and Rituxan. I haven't made a decision yet, but the office is going to check with my insurer and see what the cost would end up being and also what hoops we'd have to jump through for approval.

I know that the kiddoes are all back in school now so that is likely why its so quiet!!

Georgina, would love to hear how Josh is doing at college.

, how did do with the MTX shot? I th ink I missed that post...

and Rob 18 Spondy

[Guest guest]

glad the iron infusions are going well so far. Sorry about the PICC line but at least it will make life much easier in terms of IV sticks! I'm sure it will be great for the camp kids to know you really can relate, eh??? Have fun at the camp and glad you will be seeing a Rheumy soon. IssadoraOn 10/7/07, Salvucci <lsalvucci42@...> wrote:

Well I had my second of eight Iron infusions I will be

recieving over the next month. The nurse decided that

my viens suck way to much so I will have a picc line

placed this week and my third infusion on Friday. Oh

joy. But in a positive light I do feel like I have a

bit more energy for the time being. Next weekend I

will be going up to volunteer at the camp I have been

volunteering at for the past six years (its a camp for

kids with cancer, this upcoming is the last family

camp weekend of the year). My rheumy appointment is

the 25th of this month.. so I am looking forward to

that. Pretty much that is what is going on. I cannot

wait to get past all this and get back to feeling

better.

Love always

(JAS, 22)

__________________________________________________________

Fussy? Opinionated? Impossible to please? Perfect. Join 's user panel and lay it on us.

http://surveylink./gmrs/_panel_invite.asp?a=7

-- " I am not sick. I am broken. But I am happy as long as I can paint. " --Frida Kahlo

[Guest guest]

I am so happy that you are feeling better since the iron infusions. I hope that each day brings you more and more energy and strength!!

I'm so sorry that you have to get a PICC line, but it sure will make your life easier for the rest of the infusions.

Have a wonderful time at camp and I hope that you feel well enough to enjoy.

Take care

and Rob 18 Spondy Update > Well I had my second of eight Iron infusions I will be> recieving over the next month. The nurse decided that> my viens suck way to much so I will have a picc line> placed this week and my third infusion on Friday. Oh> joy. But in a positive light I do feel like I have a> bit more energy for the time being. Next weekend I> will be going up to volunteer at the camp I have been> volunteering at for the past six years (its a camp for> kids with cancer, this upcoming is the last family> camp weekend of the year). My rheumy appointment is> the 25th of this month.. so I am looking forward to> that. Pretty much that is what is going on. I cannot> wait to get past all this and get back to feeling> better. > > Love always> (JAS, 22)> > > > ____________________________________________________________________________________Fussy? Opinionated? Impossible to please? Perfect. Join 's user panel and lay it on us. http://surveylink./gmrs/_panel_invite.asp?a=7 > >

[Guest guest]

Congratulations to you all for getting the job and now being able to move back home. There are so many reasons to think about staying and finishing the school year out but also many reasons to not stay and to get on up there. You need the support of your DH & extended family and I am glad that you will be near them soon. I know how that is. I do have friends here but no family at all. My exhusbands family is here but most of them have written me off, but then they wrote my ex husband off also. So not much of a family. I get my support here from my church family. Good luck and I hope you are able to get moved and keep your family all together soon.

Veri & Jaye 13 poly************************************** See what's new at http://www.aol.com

[Guest guest]

Awesome news all around Donna! I hope that everything just falls into place for you and that all the decisions you have ahead of you are easy......

Alia and Caroline, age 5, poly and uveitis

Update

Well, DH got the job in NY. He will start next month. Kailey and I

will not go up right away, need to fix the house up and decide if we

should sell or rent and may just try to finish out the school year. It

will be tough doing it all on my own. I just hope and pray that this

is the best thing in the long run for us. I am so excited at the

thought of having my family and friends near again and really looking

forward to the beautiful Fall Seasons in the Northeast but at the same

time it is really scary. I do know there are more options for

pediatric specialists though so that is definitley a plus. If anyone

sees a Ped Rheumy and or Nephrologist on Long Island your input would

be great. And Opthomologist too. Being able to just go for coffee with

my Best Friend again in person will be soooooooooo good. Not to mention

being there when my parents need me and my brothers. Kailey is very

excited about it also which is a big plus. She can't wait to see snow,

lol, but I am trying my best to explain how the winters can get up

there to make sure she understand the true picture. Trying to give her

the good and the bad to be sure this is something she wants to do too.

We also had Kailey's 504 meeting and set a plan for her. Her flare has

calmed down now as well. My writing her homework answers and using the

computer has really helped a lot. What used to take up to 2 hours or

more with a lot of yelling and whining now takes about 45 mintutes or

less with little frustration and she seems to have a better

understanding of the lessons.

Donna (Kailey, 8, Poly)

Email and AIM finally together. You've gotta check out free AOL Mail!

[Guest guest]

Thanks Veri. I am very excited. My mom and my Best Friend are real

happy too.

[Guest guest]

Thanks Alia. I hope so too.

I can't wait to see the photos I hope they are up soon.

Donna (Kailey, almost 9, Poly)

[Guest guest]

I slept pretty nicely last night too, even with the breakers on (last 2-3

days

could only sleep with them off, even though most of my appliances that are

plugged in are in filters; the 240V oven is the big remaining exception).

I now suspect that turning the breakers off myself is part of the problem,

because of course the fields are large at the panel.

Bill

On 10/25/07, m.a.norman <m.a.norman@...> wrote:

>

> I've been turning my electric off at night and the EMF has been normal

> today. It's been a peaceful day.

>

> But sleep is a wonderful healer and most of the week I've spent asleep,

> day

> and night. I'm blessed that I can rest and restore myself in this way, and

> today after around 12 hours sleep feeling refreshed I went out this

> morning

> for the first time this week. I will not give in to this.

>

> But I very quickly get tired and I think most of us who are suffering emf

> find this.

>

> Maureen

>

>

>

[Guest guest]

Hi ,

Sounds promising- lets hope the lab does the tests and they show up

something- it's better to know what the problem is rather than keep

wondering. In the USA you would get a diagnosis as the TSH range is 0.3 to

3.0 there.

Hi all,

After my uninspiring visit to the endo (I was referred by a locum cos my

GP was on holiday) I made an appointment to see my GP.

He was much more sympathetic and said that he believed one could be

hypothyroid and have normal bloods. (TSH 3.7 [0.4-4.0] T4 17.01 [i

think the ref range was 12-19 but I only got a quick look]) He also

believes in T4/T3 conversion problems unlike the endo who said it was a

load of rubbish!

He has requested freeT3 and thyroid antibody but warned me that the lab

may query it although he wrote on the forms that I had normal thyroid

function panel but symptoms of hypo.

I guess we'll wait and see. I'll post again when I get the results.

He did give me hope though and promised to get to the bottom of why I am

soooo tired.

Best wishes to all

Regards

Messages are not a substitute for professional medical advice. Always

consult with a suitably qualified practitioner before changing medication.

[Guest guest]

Issadora - maybe instead of thinking about all the things you need to be

doing - concentrate on one accomplishment at a time. Sometimes we need to

accept the things that we as humans cannot change and work on those things that

are within our grasp. I don't post here as much but I do continue to read.

You are an excellent writer - I have enjoyed you poetry. It is hard as a

mother of a child who has JRA to listen to Hunter's aspirations and know that

this

dreaded disease is going to throw up so many road blocks. We take it one

day at a time and at times - one second at a time. Just try to stay strong and

don't give your " inner power " to this disease. As Sir Winston Churchill said

" Never give in - never, never, never, never in nothing great or small, large

or petty, never give in except to convictions of honour and good sense.

Never yield to force, never yield to the apparently overwhelming might of the

enemy. " Sandi Ken Hunter (9 Systemic)

**************************************See AOL's top rated recipes

(http://food.aol.com/top-rated-recipes?NCID=aoltop00030000000004)

[Guest guest]

Issadora,

Have wondered how you are holding up and sad to hear there isn't some

improvement. Take what ever helps you and try to sleep when ever you

can. It sounds like you have an awful lot to deal with; it must be

very overwhelming. I'm sure it's no fun to be awake at 5:00 a.m. and

uncomfortable! Can they do a small injection into your thumb? I do

have a friend with diabetes and although the " tendonitis " diagnosis

is lame, that is common with diabetics. My friend Matt had several

steroid injections to get the inflammation down in his hands and

elbows, then shoulders.

I think Hunter's Mom is right on target, just do one thing at a time

until you get things done. It's easier to remove yourself

emotionally if you focus on one thing at a time too.

I wish someone could take your pain away.....hang in there, Hadley

>

> *Hi everyone-

>

> I don't have a whole lot to report over here. I feel like my life is

> virtualy stagnant and it shouldn't be this way but things are just

mentally

> overwhelming to me.

>

> My back is getting better but overall pain in it is much more worse

than it

> was before this injury took place. I hope it doesn't stay at this

level.

> It's hard for me to stand straight many times and the stiffness is

quite

> serious. My doctor didn't have all that much to say except that he

wanted

> the ER records before we proceed. What could I say??? I feel like..

well

> great.. Moooooore time to waste to me but that's the nature of my

health

> care.

>

> In terms of my thumb/hand issue, he looked at it, pushed on it and

diagnosed

> it as 'tendonitis'.... which I know is really not saying much. I

could have

> said that... well in fact I had been saying for the longest that

the I

> believe the tendons are inflamed because well... around my palm

near my

> thumb is puffy and between the thumb and wrist joint is painful....

and

> those are ligaments.. geee.... duh. He didn't give any suggestions

for

> helping it but one o fmy friends said that often doctors will just

kinda

> blow stuff like this off until it becomes disabling. Gee, thanks.

>

> The one piece of good news that I got was that my Ha1c test which

basicaly

> keeps tabs on how serious my diabetes is was a lot lower than it

has been.

> It's a lot closer to normal and I'm happy about this. So that was

helpful.

>

> We discussed antiinflammatories but I have been on sooo many and my

stomach

> isn't a fan so we decided to hold off on any daily ones. I can take

> Ibuprofen as needed (ugh). He added vicoden for break through pain

in

> between the MS contin controlled release doses that I take every 12

hours so

> now I'm on TWO narcotic drugs. I DON'T like that. I have been okay

and

> functioning better with the MS Contin but I don't like to take more

than

> that however the break through pain can be very bad at times

especialy the

> nerve pain stuff but still, this is NOT the direction that I feel

very

> comfortable with. *

> *

> My sleep has been very erratic and it's interacting with my mood.

While I

> don't share it often, I also deal with Complex PTSD (post traumatic

stress

> disorder). It's from long ago trauma issues but the consequences

never

> really went away. It's maneagable and goes into hiding as I say but

at

> times, I still get flashbacks and triggered. It's really hard for

me to deal

> with and this has been happening more lately for no reason I can

come up

> with. My therapist says she feels it's because first off... the

downer

> effect of the narcotics, my erratic sleep schedule and those

increasing mood

> issues also makes my brain much more vulnerable to having the

flashbacks. So

> I'm supposed to work super hard on my sleep routines (as I sit here

at 5am

> typing this... ).... blah.

>

> I think for me, right now, the pain is a big deal but mostly

frustrated

> because I have a lot of goals and things I want to do but feel like

I'm not

> able to do them at this time or hardly anything without feeing

overwhelmed.

>

> well I shared more than I expected so there.

>

> Issadora*

>

>

> --

> " Life- Like the flutter of wings... feel your hollow wings

rushing... " (AFI-

> Silver and Cold).

>

> my Flight in life is a metamorphsis of growth and this flutter of

wings is

> within me awaiting to find a space to find it's flow...

>

>

>

[Guest guest]

hey Iss...I sure hope u can get answers and relief soon. This crap can sure suck

and we can get more than our fill...as always hang tight and hopefully 2008 will

a much kinder year to us my friend!

Donna

Update

*Hi everyone-

I don't have a whole lot to report over here. I feel like my life is

virtualy stagnant and it shouldn't be this way but things are just mentally

overwhelming to me.

My back is getting better but overall pain in it is much more worse than it

was before this injury took place. I hope it doesn't stay at this level.

It's hard for me to stand straight many times and the stiffness is quite

serious. My doctor didn't have all that much to say except that he wanted

the ER records before we proceed. What could I say??? I feel like.. well

great.. Moooooore time to waste to me but that's the nature of my health

care.

In terms of my thumb/hand issue, he looked at it, pushed on it and diagnosed

it as 'tendonitis'.... which I know is really not saying much. I could have

said that... well in fact I had been saying for the longest that the I

believe the tendons are inflamed because well... around my palm near my

thumb is puffy and between the thumb and wrist joint is painful.... and

those are ligaments.. geee.... duh. He didn't give any suggestions for

helping it but one o fmy friends said that often doctors will just kinda

blow stuff like this off until it becomes disabling. Gee, thanks.

The one piece of good news that I got was that my Ha1c test which basicaly

keeps tabs on how serious my diabetes is was a lot lower than it has been.

It's a lot closer to normal and I'm happy about this. So that was helpful.

We discussed antiinflammatories but I have been on sooo many and my stomach

isn't a fan so we decided to hold off on any daily ones. I can take

Ibuprofen as needed (ugh). He added vicoden for break through pain in

between the MS contin controlled release doses that I take every 12 hours so

now I'm on TWO narcotic drugs. I DON'T like that. I have been okay and

functioning better with the MS Contin but I don't like to take more than

that however the break through pain can be very bad at times especialy the

nerve pain stuff but still, this is NOT the direction that I feel very

comfortable with. *

*

My sleep has been very erratic and it's interacting with my mood. While I

don't share it often, I also deal with Complex PTSD (post traumatic stress

disorder). It's from long ago trauma issues but the consequences never

really went away. It's maneagable and goes into hiding as I say but at

times, I still get flashbacks and triggered. It's really hard for me to deal

with and this has been happening more lately for no reason I can come up

with. My therapist says she feels it's because first off... the downer

effect of the narcotics, my erratic sleep schedule and those increasing mood

issues also makes my brain much more vulnerable to having the flashbacks. So

I'm supposed to work super hard on my sleep routines (as I sit here at 5am

typing this... ).... blah.

I think for me, right now, the pain is a big deal but mostly frustrated

because I have a lot of goals and things I want to do but feel like I'm not

able to do them at this time or hardly anything without feeing overwhelmed.

well I shared more than I expected so there.

Issadora*

--

" Life- Like the flutter of wings... feel your hollow wings rushing... " (AFI-

Silver and Cold).

my Flight in life is a metamorphsis of growth and this flutter of wings is

within me awaiting to find a space to find it's flow...

[Guest guest]

Issadora

I cannot begin to imagine your level of frustration. I wish there were something

I could do for you.

I had an acute attack of tendonitis in my thumb back in June that was horribly

painful. I actually went to the ER, having never had this before, and I had been

doing a lot of gardening, and had cuts on my hand. It was so red and inflamed I

thought I actually had an infection. But no, it was 'just' tendonitis. I of

course ended up on high dose prednisone for awhile. But it was terribly painful,

that was for sure.

I have forgotten, please forgive me, but what is the status of your Medicaid

application? I am thinking you were waiting on records or something? Has

anything been done in that direction??

We are all here for you and hope that 2008 will bring many improvements and

blessings into your life.

and Rob 18 JAS

Update

> *Hi everyone-

>

> I don't have a whole lot to report over here. I feel like my

> life is

> virtualy stagnant and it shouldn't be this way but things are

> just mentally

> overwhelming to me.

>

> My back is getting better but overall pain in it is much more

> worse than it

> was before this injury took place. I hope it doesn't stay at

> this level.

> It's hard for me to stand straight many times and the stiffness

> is quite

> serious. My doctor didn't have all that much to say except that

> he wanted

> the ER records before we proceed. What could I say??? I feel

> like.. well

> great.. Moooooore time to waste to me but that's the nature of

> my health

> care.

>

> In terms of my thumb/hand issue, he looked at it, pushed on it

> and diagnosed

> it as 'tendonitis'.... which I know is really not saying much. I

> could have

> said that... well in fact I had been saying for the longest that

> the I

> believe the tendons are inflamed because well... around my palm

> near my

> thumb is puffy and between the thumb and wrist joint is

> painful.... and

> those are ligaments.. geee.... duh. He didn't give any

> suggestions for

> helping it but one o fmy friends said that often doctors will

> just kinda

> blow stuff like this off until it becomes disabling. Gee, thanks.

>

> The one piece of good news that I got was that my Ha1c test

> which basicaly

> keeps tabs on how serious my diabetes is was a lot lower than it

> has been.

> It's a lot closer to normal and I'm happy about this. So that

> was helpful.

>

> We discussed antiinflammatories but I have been on sooo many and

> my stomach

> isn't a fan so we decided to hold off on any daily ones. I can take

> Ibuprofen as needed (ugh). He added vicoden for break through

> pain in

> between the MS contin controlled release doses that I take every

> 12 hours so

> now I'm on TWO narcotic drugs. I DON'T like that. I have been

> okay and

> functioning better with the MS Contin but I don't like to take

> more than

> that however the break through pain can be very bad at times

> especialy the

> nerve pain stuff but still, this is NOT the direction that I

> feel very

> comfortable with. *

> *

> My sleep has been very erratic and it's interacting with my

> mood. While I

> don't share it often, I also deal with Complex PTSD (post

> traumatic stress

> disorder). It's from long ago trauma issues but the consequences never

> really went away. It's maneagable and goes into hiding as I say

> but at

> times, I still get flashbacks and triggered. It's really hard

> for me to deal

> with and this has been happening more lately for no reason I can

> come up

> with. My therapist says she feels it's because first off... the downer

> effect of the narcotics, my erratic sleep schedule and those

> increasing mood

> issues also makes my brain much more vulnerable to having the

> flashbacks. So

> I'm supposed to work super hard on my sleep routines (as I sit

> here at 5am

> typing this... ).... blah.

>

> I think for me, right now, the pain is a big deal but mostly

> frustratedbecause I have a lot of goals and things I want to do

> but feel like I'm not

> able to do them at this time or hardly anything without feeing

> overwhelmed.

> well I shared more than I expected so there.

>

> Issadora*

>

>

> --

> " Life- Like the flutter of wings... feel your hollow wings

> rushing... " (AFI-

> Silver and Cold).

>

> my Flight in life is a metamorphsis of growth and this flutter

> of wings is

> within me awaiting to find a space to find it's flow...

>

>

>

[Guest guest]

,

Good to hear the Update. I to worried so much about . Wanted to

make sure she did not get sick. I took precautions but Kid's are going to be

Kid's. If we do not let them do thing's and try thing's they can Rebel. I had

my Family helping me by taking places to get her doing thing's on her

own. Also this helped her see I would not always be there. She took on more

responcibility. We use to argue over thing's but as time passed it got easier.

I would not leave her alone I always had someone with her. Ummm Today she is

20 and has been alone at times since she was 17. lololol. Ok she was not

always with me prior to 17 but she was with Family. I finally started letting

her

stay alone. She had the phone if anything happened I was a call away.

I know it is hard but allowing your child to do thing's will allow him or

her to be able to make their own choices. If anything they can say ok I need

help. Cold's and Viruses will always be out there. If you teach the child to

back away from some who coughs or sneezes sure helps. Touching thing's

would never touch anything like door knobs or such out in public. She

would

always use the sleeve of her shirt or jacket or tissue to open doors and

such. When someone coughed she backs away and walks the other way. But School

aged kids pick up everything. That is hard to avoid.

I would allow her to try what she wanted. It just might do her good to

keep that Will Power as did and it worked. Hope this helps. She will

know when to chill on thing's

Robbin

**************Start the year off right. Easy ways to stay in shape.

http://body.aol.com/fitness/winter-exercise?NCID=aolcmp00300000002489

[Guest guest]

Thanks for the update, . I am sorry to hear of 's continued

struggles. Glad to see you still check out the board. Post when you can,

and congratulate Jen on making the team - that is quite an

accomplishment! Michele ( 20. spondy)

________________________________

From: [mailto: ] On

Behalf Of tim chesney

Sent: Sunday, January 13, 2008 1:45 PM

Subject: update

Hello All,

Its been a long time since I wrote about . She is

13 and was dx in 2001 with pauc jra, and then in 2004

she was dx with poly which was strange since I did

know it could change, she also has chronic uvestis. In

April 07 she was dx with kidney failure and kimura

diease. With 6 months of chemo JEn is now on a meds so

her body will not reject her own kidneys. Since Dec

she has had a problem with her knee, but she can not

take her arthritis meds because those meds go right

thru the kidneys, so if she has flares she can only

take tylenol. Jen's world has been tossed upside down

but she has been doing a good job of talking about it

and she has made the girls basketball team because she

is not going to let anything get her down, I wish I

could feel the same. I worry so much every time she

gets a cold or aches I worry if she falls but I am

trying to learn its her life and she can manage it

because so far she has.She is so good about taking her

meds which are yuk on her own.

Always

anf

Lake in the hills illinois

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[Guest guest]

What a trooper you have there. Terri

update

Hello All,

Its been a long time since I wrote about . She is

13 and was dx in 2001 with pauc jra, and then in 2004

she was dx with poly which was strange since I did

know it could change, she also has chronic uvestis. In

April 07 she was dx with kidney failure and kimura

diease. With 6 months of chemo JEn is now on a meds so

her body will not reject her own kidneys. Since Dec

she has had a problem with her knee, but she can not

take her arthritis meds because those meds go right

thru the kidneys, so if she has flares she can only

take tylenol. Jen's world has been tossed upside down

but she has been doing a good job of talking about it

and she has made the girls basketball team because she

is not going to let anything get her down, I wish I

could feel the same. I worry so much every time she

gets a cold or aches I worry if she falls but I am

trying to learn its her life and she can manage it

because so far she has.She is so good about taking her

meds which are yuk on her own.

Always

anf

Lake in the hills illinois

__________________________________________________________

Be a better friend, newshound, and

know-it-all with Mobile. Try it now.

http://mobile./;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ

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8:23 PM

[Guest guest]

It's common for the port site to leak a little. Usually it looks a bit like port wine color. It's probably melted fat. However, I would suggest taking a digital photo of the wound and sending it to Nina. She can forward it to one of the docs so they can take a look.

On Feb 10, 2008 2:03 PM, kentstationdentist <netak@...> wrote:

I am writing an update for my husband, since he has not..

Dane ston

Date of surgery 1-12-08

He is doing great, he has lost 36.5 pounds

he is starting to walk and he is more positive about life..

one question though his port scar seems to be taking awhile to heal

he gets a little worried about it... it sometimes drains or looks like

its going to... almost like his wound opened a little bit...

has anyone had this happen????

He wants to say hello to everyone and hopes everyone is doing well

Dane 368/331

[Guest guest]

Well thank you Dane's wife We appreciate the update!! Dane is doing amazing on his numbers!! I didn't have my wound open or drain but I had stitches that wouldn't stay put. The knots in my stitches kept sticking out, I called Dr. A's office a number of times and at some point found out it called spiting stitches I wanted so bad to leave them alone but they were very annoying and rubbed on my clothes. Finally I snipped them in just the right spot and the knots came out and I didn't have any problems after that. That scar definitely takes the longest to heal. Tell Dane to have patience and try to leave it alone. Only if you suspect infection should you be concerned. And I think we have all heard the important advice, don't pick at it

CyrenaDOB: 1/19/07240/143/145current/now/goal UPDATE

I am writing an update for my husband, since he has not..

Dane ston

Date of surgery 1-12-08

He is doing great, he has lost 36.5 pounds

he is starting to walk and he is more positive about life..

one question though his port scar seems to be taking awhile to heal

he gets a little worried about it... it sometimes drains or looks like

its going to... almost like his wound opened a little bit...

has anyone had this happen????

He wants to say hello to everyone and hopes everyone is doing well

Dane 368/331

[Guest guest]

HI MY NAME IS JANICE, I HAD MY SURGERY ON 11/2/07, I HAD THE SAME PROBLEM WITH MY PORT AREA, JUST SMALL SECTION DIDN'T HEAL AS FAST, I JUST TRIED TO KEEP IT DRY. I BOUGHT A WIDE BANDAGE AND KEPT IT COVER SO THAT IT WOULDN'T DRAIN ON MY CLOTHS. I AM FINE NOW, AND GOOD LUCK ON YOUR NEW JOURNEY. JANICE STOKES 378/325/300kentstationdentist <netak@...> wrote: I am writing an update for my husband, since he has not.. Dane ston Date of surgery 1-12-08He is doing

great, he has lost 36.5 pounds he is starting to walk and he is more positive about life..one question though his port scar seems to be taking awhile to heal he gets a little worried about it... it sometimes drains or looks like its going to... almost like his wound opened a little bit... has anyone had this happen???? He wants to say hello to everyone and hopes everyone is doing well Dane 368/331

[Guest guest]

HEY JANICE!!!!!!!

How the heck are ya?! 53 pounds! That is awesome! I am getting

ready to send an e-mail to all of you from 11/2. It is so good to

see you are doing so well!

Sheri

> I am writing an update for my husband, since he has not..

> Dane ston

> Date of surgery 1-12-08

> He is doing great, he has lost 36.5 pounds

> he is starting to walk and he is more positive about life..

> one question though his port scar seems to be taking awhile to heal

> he gets a little worried about it... it sometimes drains or looks

like

> its going to... almost like his wound opened a little bit...

> has anyone had this happen????

>

> He wants to say hello to everyone and hopes everyone is doing well

>

> Dane 368/331

>

[Guest guest]

Sounds good and boy do I feel for you over the knee injection! They are not pleasant! But your knee probably feels great today so its a tradeoff. I am curious about your gluten free diet. How is it going? Do have a specific diet you follow or have you created your own so to speak? I am seeking alternatives and trying to avoid arthritis meds and I hear diet plays a definite part. When you have a chance let me know...

hugs!

Donna**************Planning your summer road trip? Check out AOL Travel Guides. (http://travel.aol.com/travel-guide/united-states?ncid=aoltrv00030000000016)

[Guest guest]

My doctor was the one to put me on it and its just the standard celiac diet. I

eat mostly meat salads vegitables and fruit. I have tried some of the gluten

free things but mostly I'm good with that. I can eat rice as long as its not

flour enriched. I read every lable because so many things have it hidden like

hydrolyzed vegitable protein is gluten. My step mom has celiac so she has been

on this diet for like 5 years so its helpful she gives me lots of advice. She

has a special part of the pantry for my food and buys lunch meats and cheese

that are gluten free. I know the things I can eat and the things I can't and if

I'm not sure I either read the lable or skip it all together. Its not bad though

I don't feel deprived. Because I'm not doing it to lose weight just to get

healthy all in all not so bad. No big improvement yet but its what they say I

need to do so why not.

With love

(jas, 23)

Sent via BlackBerry by AT & T

Re: Update

Sounds good and boy do I feel for you over the knee injection! They are not

pleasant! But your knee probably feels great today so its a tradeoff. I am

curious about your gluten free diet. How is it going? Do have a specific diet

you follow or have you created your own so to speak? I am seeking alternatives

and trying to avoid arthritis meds and I hear diet plays a definite part. When

you have a chance let me know...

hugs!

Donna

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

Planning your summer road trip? Check out AOL Travel Guides.

(http://travel.aol.com/travel-guide/united-states?ncid=aoltrv00030000000016)