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Seriously , Have you looked at your face! WOW girly! Not everyone gets lucky and losing their double chin like that. You look amazing. Keep up the great, hard, painful, wonderful work!!! Cyrena 240/130/150start/now/goalDOB: 1/19/07 [Dr-Aceves-bandster s] Update

> > @groups. com

> > Date: Thursday, August 7, 2008, 2:44 PM

> >

> >

> >

> >

> >

> >

> > Hello my banded and sleeved partners in the weight loss journey-

> >

> > This is one of the 's here (banded 4/18/08) and I haven't had

> > much time to write but wanted to drop you all a BIG HELLO. I went on

> > vacation about a week ago, and THIS time, me and the baby (three

> > years old!) gained two pounds, my husband put on five and my son

> > (football player) gained nine pounds! That's in one week! Now the

> > wonder of that is, on every vacation we have ever taken, I have always

> > been the BREAD WINNER, and eater for that matter, that came back with

> > most pounds gained! Well NOT this time BABY! Of course the son and

> > husband both lost their vacation weight this week, son through

> > two-a-days and husband because he's a lucky bast**d that never gains

> > any weight he actually keeps, but joy of joys, my weight is gone as

> > well! I have lost 62 pounds since I had the band in place four months

> > ago and have gone from a size 24-26, to a size 14-16 and I feel

> > PRETTY!!!!!! !!

> >

> > I have plateaued a few times, am actually in the midst of one

> > currently, but I do think that's the nature of the beast. The beast

> > being my thighs and arse, but nevertheless, I continue on my whirlwind

> > adventure in band-land! I say this to all you considering, there aint

> > no easy fix girls and boys. This is hard, irritating, psychosocial

> > evaluating stuff, but at the end of it, there's a thinner me.

> >

> > By the by, I weigh "about" (less twenty pounds I have lost a hundred

> > times in the past 17 years) what my normal body weight has been most

> > of my adult life. I think the real psychological test for me will be

> > when I lose the next 21 pounds. I haven't weighed less than that since

> > my son was born and his 18th birthday is September 10. I'll keep you

> > posted. Be cool, and get thin! I will try to post pics soon!!!!!

> > (one of them!)

> >

>

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Cyrena, I am very glad the double chin went away so fast. I think in

part that is because I had only been THAT big for about a year and a

half or so, not counting the pregnancy. However, I aint looking a gift

horse in the mouth, or chin, for that matter! I hope you're all

settled in and gainfully employed as well! Thanks for the kind words.

It feels good to look like the old me again! Now the hard part, losing

the rest of it! :)

> > >

> > > From: andreaearlemccorkle <andreaearlemccorkl e@...>

> > > Subject: [Dr-Aceves-bandster s] Update

> > > @groups. com

> > > Date: Thursday, August 7, 2008, 2:44 PM

> > >

> > >

> > >

> > >

> > >

> > >

> > > Hello my banded and sleeved partners in the weight loss journey-

> > >

> > > This is one of the 's here (banded 4/18/08) and I haven't had

> > > much time to write but wanted to drop you all a BIG HELLO. I went on

> > > vacation about a week ago, and THIS time, me and the baby (three

> > > years old!) gained two pounds, my husband put on five and my son

> > > (football player) gained nine pounds! That's in one week! Now the

> > > wonder of that is, on every vacation we have ever taken, I have

always

> > > been the BREAD WINNER, and eater for that matter, that came back

with

> > > most pounds gained! Well NOT this time BABY! Of course the son and

> > > husband both lost their vacation weight this week, son through

> > > two-a-days and husband because he's a lucky bast**d that never gains

> > > any weight he actually keeps, but joy of joys, my weight is gone as

> > > well! I have lost 62 pounds since I had the band in place four

months

> > > ago and have gone from a size 24-26, to a size 14-16 and I feel

> > > PRETTY!!!!!! !!

> > >

> > > I have plateaued a few times, am actually in the midst of one

> > > currently, but I do think that's the nature of the beast. The beast

> > > being my thighs and arse, but nevertheless, I continue on my

whirlwind

> > > adventure in band-land! I say this to all you considering, there

aint

> > > no easy fix girls and boys. This is hard, irritating, psychosocial

> > > evaluating stuff, but at the end of it, there's a thinner me.

> > >

> > > By the by, I weigh " about " (less twenty pounds I have lost a hundred

> > > times in the past 17 years) what my normal body weight has been most

> > > of my adult life. I think the real psychological test for me will be

> > > when I lose the next 21 pounds. I haven't weighed less than that

since

> > > my son was born and his 18th birthday is September 10. I'll keep you

> > > posted. Be cool, and get thin! I will try to post pics soon!!!!!

> > > (one of them!)

> > >

> >

>

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Hi Lizzie - believe me, I can understand your absolute frustration - you have gone through so much to get hardly anywhere. However, I think that if you explain all this to Dr B and tell him that you are now ready to stop your synthetic T4 and T3 and have a trial of Armour as, after all, you have tried all the different combinations using the synthetic hormones and still not managed to get to the place you want to be. Didn't he actually say that if you couldn't get well on the synthetics he would give you a trial of Armour? I can't remember, but you really need to see if this will work. People seem to forget the T2 and T1 that is in Armour. It is there because it has a purpose, even though they try to deny this because there hasn't been as lot of research. Just because not much research has taken place doesn't mean they don't have a purpose. Have a look in the information and citations in my response to the BTA statements on Armour and T4/T3 combination therapy and you can read the research that has been done on T2 and T1 and their conclusions.

I would wait and see what your blood results show this time, post them here and then we can look further into this.

Luv and big (((HUGS))) - Sheila

Hi Sheila and allJust returned from my holidays in France. You may remember I had atelephone conversation with Dr B prior to going giving me adviceregarding what I thought to be a symptom of over medication. Well Itook his advice and took t4 100 instead of 125 and T3 10 but one weekinto the hol started to feel very tired aching joints and weak musclesso I increased the T3 to 20. symptoms did ease as per the aching andtiredness went a bit. Leg thigh cramp saga however continues, I amtotally fed up with it now, it is now 12 months since these crampsarrived when I had been on T4 for 11 months no problems up until then.I am having another blood test at the end of this week. I feel now asthough I dont think they will ever go away and I will just have to bea "miserable moan" as that it what I can be like when the cramps areparticularly bad. I am seriously wondering if it could be the T4 thatis the root cause of these pains last bloods showed T4 11.4 T3 6.4 andTSH 0.04. I feel so close now to trying Armour but I really dont wantto have to pay for it on top of all vits and supplements and then itmay not work anyway. I feel as though I have tried everything, I take2-3 NAE daily selenium 200mg, Zinc 10 Vit c 1000mg Magnesium 150 mgbut still they continue.From a fed-up lizzie at the end of her tether now.No virus found in this incoming message.

Checked by AVG - http://www.avg.com Version: 8.0.138 / Virus Database: 270.6.0/1603 - Release Date: 10/08/2008 18:13

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Hi Sheila

He did tell me initially that he would only prescribe armour as a last

resort. I think that I am getting to the last resort now. Thanks for

your comforting words I know that you understand how I feel, whereas

most of my family don't really know what I am moaning about.

love Lizzie

Didn't he actually say that if you couldn't get well on the

synthetics he would give you a trial of Armour? I can't remember, but

you really need to see if this will work.

>

> No virus found in this incoming message.

> Checked by AVG - http://www.avg.com

> Version: 8.0.138 / Virus Database: 270.6.0/1603 - Release Date:

10/08/2008 18:13

>

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Hi Lizzie,

Do you have any Corlan pellets (by Celltech), available either at

home or can be bought fairly cheaply OTC. They are specified for

aphthous ulcers (mouth), but may just get you over the hill with the

muscle cramps.

Being well suppressed at TSH 0.04 mU/L, it may raise that enough to

lessen the pain.

One (or two) pellets ought to work within hours...if they do, you

have an immediate answer, if not, there's little harm in a small

adjustment that is temporary; trial and error is one of the few ways

that people make progress.

Finding a way through the morass of detail is tricky and requires

patience.

best wishes

Bob

>

> Hi Sheila and all

>

> Just returned from my holidays in France. You may remember I had a

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Hi Bob

I have been told about the Corlan pellets and that they can help with low adrenal function as they contain 2.5% HC, if they help then you can be fairly sure that HC itself would help? Have you any thoughts on this?

From: bob.m9uk <Bob.m9uk@...>Subject: Re: Updatethyroid treatment Date: Monday, 11 August, 2008, 1:25 PM

Hi Lizzie,Do you have any Corlan pellets (by Celltech), available either at home or can be bought fairly cheaply OTC.best wishesBob>> Hi Sheila and all> > Just returned from my holidays in France. You may remember I had a

Not happy with your email address?

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Thank you Bob

I have not tried corlan pellets. I am sorry but I don't quite

understand what you mean about my suppressed TSH and the Corlan

pellets bringing it up to lessen the pain, would you please explain

this in more detail (brain fog etc, etc).

Love Lizzie

> Being well suppressed at TSH 0.04 mU/L, it may raise that enough to

> lessen the pain.

> Finding a way through the morass of detail is tricky and requires

> patience.

>

>

> best wishes

> Bob

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Hi Jane,

I replied to Lizzie above #19012 (put this number in the search

facility)

...and it's only half an answer

...working on the rest

best wishes

Bob

>

> hi bob;   could you explain please how taking corlan pellets can

help with a suppressed tsh level.  many thanks  jane

>

> Send instant messages to your online friends

http://uk.messenger.

>

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Hi Sheila

I had my blood test on Friday and Dr B rang me this morning with the

results.

T4 9.2

T3 4.8

TSH 0.03

He was very nice and asked how I was and after discussion he has

decided to up my T4 to 125mcg and remain on T3 20mcg. If you remember

I was feeling over-medicated on that dose a few weeks ago with a blood

result of T4 11.4 T3 6.2 and TSH 0.04. I have explained that despite

everything I still have the leg cramps but I don't think he has an

answer for me. He is going to see me again on 17th Oct so if I am no

better then I will take hubby and ask for a trial of Armour. I have

wondered if the time when I felt over-medicated if I could have been

having an anti-body attack as I did have anti-bodies found when I was

diagnosed. The difference in the dose reduction and my symptoms has

been quite dramatic for such a small dose reduction. When I had the

blood test I had been taking the increased dose of T3 for 11 days do

you think that increase would have been fully absorbed when I had the

test. I know that T3 has a short half life but Dr B has said that it

takes time to get in the system for the effects to be felt. Sorry I

think I have started rambling. BTW I had stopped all meds for 33 hours

prior to this test.

I also take NAE 3 a day but I will increase it to 4 a day to try to

help me with the increase. Do you think this is the right thing to do

Sorry to be rambling so much Sheila.

Love Lizzie

> I would wait and see what your blood results show this time, post

them here and then we can look further into this.

>

> Luv and big (((HUGS))) - Sheila

>

>

> Hi Sheila and all

>

> Just returned from my holidays in France. You may remember I had a

> telephone conversation with Dr B prior to going giving me advice

> regarding what I thought to be a symptom of over medication. Well I

> took his advice and took t4 100 instead of 125 and T3 10 but one week

> into the hol started to feel very tired aching joints and weak muscles

> so I increased the T3 to 20. symptoms did ease as per the aching and

> tiredness went a bit. Leg thigh cramp saga however continues, I am

> totally fed up with it now, it is now 12 months since these cramps

> arrived when I had been on T4 for 11 months no problems up until then.

> I am having another blood test at the end of this week. I feel now as

> though I dont think they will ever go away and I will just have to be

> a " miserable moan " as that it what I can be like when the cramps are

> particularly bad. I am seriously wondering if it could be the T4 that

> is the root cause of these pains last bloods showed T4 11.4 T3 6.4 and

> TSH 0.04. I feel so close now to trying Armour but I really dont want

> to have to pay for it on top of all vits and supplements and then it

> may not work anyway. I feel as though I have tried everything, I take

> 2-3 NAE daily selenium 200mg, Zinc 10 Vit c 1000mg Magnesium 150 mg

> but still they continue.

>

> From a fed-up lizzie at the end of her tether now.

>

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HI Rambling Lizzie - don't ever worry about 'rambling' here Lizzie, because this is what the forum is all about. Everybody learns from other people's rambles.

Certainly your results are all very low, but I guess this was to be expected with staying off your thyroid medication for 33 hours. The increase in your L-thyroxine might well be what is needed right now, but as you say, if no better by October, then you must ask for a trial of Armour, and I think at that time, he will know he has titrated your thyroid hormones enough to know whether the synthetics are the ones that will do you good or not. T3 has a very short half life, it only stays in your body for about 8 hours - a day at the most. However, he is probably right in that it takes a while for it to have any effect on your body. When I was taking T3, it was 9 days before my body suddenly decided it was not for me.

Keep us informed as to how you go on, but I hope you can get Armour prescribed, because I am 100% certain it is the T2 in Armour that is the magic ingredient.

Luv - Sheila

Hi SheilaI had my blood test on Friday and Dr B rang me this morning with theresults. T4 9.2T3 4.8TSH 0.03He was very nice and asked how I was and after discussion he hasdecided to up my T4 to 125mcg and remain on T3 20mcg. If you rememberI was feeling over-medicated on that dose a few weeks ago with a bloodresult of T4 11.4 T3 6.2 and TSH 0.04. I have explained that despiteeverything I still have the leg cramps but I don't think he has ananswer for me. He is going to see me again on 17th Oct so if I am nobetter then I will take hubby and ask for a trial of Armour. I havewondered if the time when I felt over-medicated if I could have beenhaving an anti-body attack as I did have anti-bodies found when I wasdiagnosed. The difference in the dose reduction and my symptoms hasbeen quite dramatic for such a small dose reduction. When I had theblood test I had been taking the increased dose of T3 for 11 days doyou think that increase would have been fully absorbed when I had thetest. I know that T3 has a short half life but Dr B has said that ittakes time to get in the system for the effects to be felt. Sorry Ithink I have started rambling. BTW I had stopped all meds for 33 hoursprior to this test.I also take NAE 3 a day but I will increase it to 4 a day to try tohelp me with the increase. Do you think this is the right thing to do Sorry to be rambling so much Sheila.Love Lizzie> I would wait and see what your blood results show this time, postthem here and then we can look further into this.> > Luv and big (((HUGS))) - Sheila> > > Hi Sheila and all> > Just returned from my holidays in France. You may remember I had a> telephone conversation with Dr B prior to going giving me advice> regarding what I thought to be a symptom of over medication. Well I> took his advice and took t4 100 instead of 125 and T3 10 but one week> into the hol started to feel very tired aching joints and weak muscles> so I increased the T3 to 20. symptoms did ease as per the aching and> tiredness went a bit. Leg thigh cramp saga however continues, I am> totally fed up with it now, it is now 12 months since these cramps> arrived when I had been on T4 for 11 months no problems up until then.> I am having another blood test at the end of this week. I feel now as> though I dont think they will ever go away and I will just have to be> a "miserable moan" as that it what I can be like when the cramps are> particularly bad. I am seriously wondering if it could be the T4 that> is the root cause of these pains last bloods showed T4 11.4 T3 6.4 and> TSH 0.04. I feel so close now to trying Armour but I really dont want> to have to pay for it on top of all vits and supplements and then it> may not work anyway. I feel as though I have tried everything, I take> 2-3 NAE daily selenium 200mg, Zinc 10 Vit c 1000mg Magnesium 150 mg> but still they continue.> > From a fed-up lizzie at the end of her tether now.>No virus found in this incoming message.

Checked by AVG - http://www.avg.com Version: 8.0.138 / Virus Database: 270.6.5/1619 - Release Date: 18/08/2008 17:39

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  • 1 month later...

Hi Donna,

Thanks for the Update. Tell Rusty and I said Hi and will keep him

and you in Our Prayers. Keep us updated. Since I think of Rusty and you

often I also think about Tree. How is she doing?

Robbin

**************Looking for simple solutions to your real-life financial

challenges? Check out WalletPop for the latest news and information, tips and

calculators. (http://www.walletpop.com/?NCID=emlcntuswall00000001)

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,

Thanks for the update on Tree. Tell her and I said Hi. Tell Rusty

we will call him in the next few days. I hope all goes well on Monday You

and Donna keep us posted on both Rusty and Tree.

Robbin

**************Looking for simple solutions to your real-life financial

challenges? Check out WalletPop for the latest news and information, tips and

calculators. (http://www.walletpop.com/?NCID=emlcntuswall00000001)

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I talked to Rusty this afternoon. He is his usual cheerful self, but flat on his

back till Monday when they do the surgery. After that, he will still have a halo

device attached to his skull, but he will be able to move about as tolerated. He

is likely to spend weeks in inpatient rehab.

If anyone would like to call him and cheer him up, call 502-629-8000 (Norton

Hospital) and ask for Morse's room 5C06.

Please keep him in your prayers.

I also talked to Tree and she is doing well. Luckily she had gotten a generator

a few days before the windstorm hit that knocked out power for 8 days for her.

She was able to run her oxygen machine and charge her battery on her electric

scooter, so the timing was actually good.

I talked to them on the way up to Indianapolis this afternoon, to go with Rob to

his urology appointment.

and Rob 19 JAS

update

> I wanted to send an update on aka Rusty and ask that

> everyone keep him in your prayers. Sometime back, approx 2 -3

> months, fell and suffered pain throughout his neck and

> back but bein a wee bit stubborn did not go to the doc. After

> time and increased pain and numbness he elected to call the doc

> who ordered a CT. Doc called immediately with results and said

> get to ER NOW!!! I took him to the ER where he was admitted.

> Yesterday he was placed in traction via pins attached to his

> skull, didnt go well and he is somewhat miserable. He will

> remain in traction until Monday and will have suregery then. He

> has?a fractured T1 and it is pressing on his spinal cord.......I

> wil update often..hugs n smiles

> Donna

>

>

>

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Thanks for the update Donna. Please let Uncle Rusty know he is in our

thoughts and prayers. Michele ( 21, spondy)

________________________________

From: [mailto: ] On

Behalf Of ajaoky@...

Sent: Thursday, October 02, 2008 10:28 AM

Subject: update

I wanted to send an update on aka Rusty and ask that everyone

keep him in your prayers. Sometime back, approx 2 -3 months, fell

and suffered pain throughout his neck and back but bein a wee bit

stubborn did not go to the doc. After time and increased pain and

numbness he elected to call the doc who ordered a CT. Doc called

immediately with results and said get to ER NOW!!! I took him to the ER

where he was admitted. Yesterday he was placed in traction via pins

attached to his skull, didnt go well and he is somewhat miserable. He

will remain in traction until Monday and will have suregery then. He

has?a fractured T1 and it is pressing on his spinal cord.......I wil

update often..hugs n smiles

Donna

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Most certainly!

 

Do you have an address that we can send cards to at the hospital? Could be a fun

thing for him to get mail from all over to cheer him on.

 

e

From: ajaoky@... <ajaoky@...>

Subject: update

, ajao_young_adults ,

barbara.parker@..., beth.foster@..., Myoung@...,

kaki217@...

Date: Monday, October 6, 2008, 2:40 PM

I am just in from the hospital and is smiling and trying to keep his

spirits up. He is tired but hangin tight. I was there when the lung doc came in

and got an update. He still has fluids on his lungs and the problem is

increasing. His kidney levels are not allowing the fluids to do what they

should. He was given an insulin drip today for high blood sugar (230), he is

dealing with congestive heart failure and his level of carbon dioxide is very

high?( a huge concern). I am worried about him and ask that you all continue to

say a prayer...thanks!

Donna

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Donna,

Tell we are going to keep praying for him. Are you all related, lifetime

friends or acquainted because of the JRA? Not that it is any of my business but

I just wondered. This list almost feels like a family at times when someone is

really struggling. This list is awesome and I have learned to appreciate

everyone on it. One of the things I love about this list is when one person asks

a question we get so many responses even if it is a question that has been asked

many times over. Everyone wants to help and encourage others and that is great

because out in the real world it often seems like no one reallys cares or if

they do care they seem to be too busy to show it. Thanks so much for sharing our

prayers and letters of encouragement with .

Veri & Jaye

update

I am just in from the hospital and is smiling and trying to keep his

spirits up. He is tired but hangin tight. I was there when the lung doc came in

and got an update. He still has fluids on his lungs and the problem is

increasing. His kidney levels are not allowing the fluids to do what they

should. He was given an insulin drip today for high blood sugar (230), he is

dealing with congestive heart failure and his level of carbon dioxide is very

high?( a huge concern). I am worried about him and ask that you all continue to

say a prayer...thanks!

Donna

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For us, came on the list a while back and he has the same disease

as Chris. So we would often post back and forth with questions/answers.

Being that he understood what it was like to be a teenage boy with the

disease helped to give some perspective. Some (like Donna,

and Tree, who does not post so much anymore) live in the same area as

, so they are able to get together. has had JRA since he

was a child so it was interesting to learn how the disease was treated

" back in the day " . If I remember right he even had gold treatments and

such. That is how we came to know each other. He always had a cheerful

response even when he was in pain. I am sure he now is still his

cheerful self. It would be great if he could get back online with some

regularity so those of you who do not know him could get to know his

positive spirit. Michele ( 21, spondy)

________________________________

From: [mailto: ] On

Behalf Of veristroud@...

Sent: Monday, October 06, 2008 8:31 PM

Subject: Re: update

Donna,

Tell we are going to keep praying for him. Are you all related,

lifetime friends or acquainted because of the JRA? Not that it is any of

my business but I just wondered. This list almost feels like a family at

times when someone is really struggling. This list is awesome and I have

learned to appreciate everyone on it. One of the things I love about

this list is when one person asks a question we get so many responses

even if it is a question that has been asked many times over. Everyone

wants to help and encourage others and that is great because out in the

real world it often seems like no one reallys cares or if they do care

they seem to be too busy to show it. Thanks so much for sharing our

prayers and letters of encouragement with .

Veri & Jaye

update

I am just in from the hospital and is smiling and trying to keep

his spirits up. He is tired but hangin tight. I was there when the lung

doc came in and got an update. He still has fluids on his lungs and the

problem is increasing. His kidney levels are not allowing the fluids to

do what they should. He was given an insulin drip today for high blood

sugar (230), he is dealing with congestive heart failure and his level

of carbon dioxide is very high?( a huge concern). I am worried about him

and ask that you all continue to say a prayer...thanks!

Donna

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Michele,

( Rusty) when we met him in person in 2004 was great. We would talk

online and cut up so much lololol. has related to him as well. Rusty is

one person everyone needs to meet and everyone share his Spirit of Life with.

He is so funny and like Donna has been such a Inspiration to many ummm Tree as

well. lololol. All who has not met Rusty are missing out on such a COOL Dude.

Robbin

**************New MapQuest Local shows what's happening at your destination.

Dining, Movies, Events, News & more. Try it out

(http://local.mapquest.com/?ncid=emlcntnew00000002)

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We first became acquainted with here on the jra group/list.  was

one of the first to welcome me when I first joined.    has been a source

of encouragement, inspiration.  He also has a great sense of humor – and a

bit mischievous.  We were excited to have the opportunity to meet him in San

Diego.   was happy to finally meet “Uncle Rustyâ€.  

Val

Rob's Mom (11,systemic)

update

I am just in

from the hospital and is smiling and trying to keep

his spirits up. He is tired but hangin tight. I was there when the lung

doc came in and got an update. He still has fluids on his lungs and the

problem is increasing. His kidney levels are not allowing the fluids to

do what they should. He was given an insulin drip today for high blood

sugar (230), he is dealing with congestive heart failure and his level

of carbon dioxide is very high?( a huge concern). I am worried about him

and ask that you all continue to say a prayer...thanks!

Donna

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  • 2 weeks later...
  • 2 weeks later...

My orthotists recommended that I wear New Balance Sneakers.... the insert

out to fit my AFO-s ankle foot orthosis... mine come to my ankles so thats

what they call them it seems. blah... Anyways, New balance has all kinds of

styles and I'm sure they have high tops too. I bet the high tops support her

ankles and the orthotics will likely help a lot with that if they aren't

just the insert kind of orthotics. Anyways, that was the main brand

recommeded to me. Even my Nike's weren't good enough... lol.

Good fortune

On Fri, Oct 24, 2008 at 1:19 PM, <veristroud@...> wrote:

>

> Wow, isn't life busy. This morning my daughter Kristie Jo came up to me and

> said, " Hey Mom, did you realize that 2 months from today is Christmas Eve? " ?

> The older I get the faster time goes, hummm. Anyway, I thought I would post

> a quick update on what?we found out at our appointments.

>

> saw the podiatrist and they casted her feet for orthotics I think is

> what they are called. Of course the doctor told her that she needs to get

> some better shoes to put them in then the ones she was wearing. I did like

> that because I had told her she needed to wear her good shoes more often.

> She seems to think that her cheap shoes do not help her feet much better

> then the more expensive ones. We will be getting a new pair in the next

> couple of weeks once her orthotics arrive. Right now she wants to wear her

> red canvas hightop sneekers.? Jaye sees the rheuym on November 12th

> just a week before I leave for Paraguay.? So whats another day off from

> work.?hmmm.

>

> As for me, I met a new rheumatologist in Wichita and was not impressed. Not

> because she did not know what she was doing but because of her soft voice

> and her irritation when I had to have her keep repeating herself. I am hard

> of hearing and am unable to wear my hearing aid. Even after I explained to

> her that I could not hear her because I was hard of hearing she did not

> raise her voice any and continued to seem irritated when I asked her to

> repeat what she was telling me. It is not like I had someone there with me

> to tell me later. I assume that she knows what she is doing but am not

> convinced. She looked at my fingers and first said that there is no

> swelling. When I put the two hands together and asked then why is one hand

> considerably larger then the other one she decided that maybe I do have some

> swelling. She seems to think that I might have osteoarthritis?but that was a

> maybe,?and she gave me a cream to put on my thumb joints. She told me to

> quite taking the mobic since it does not seem to be helping much. She

> ordered a thumb splint/brace thing which I have not been able to get back to

> Wichita to get fit for yet and let me go. She did not order any lab work or

> anything, did not even suggest that I come back for a followup appointment

> at a future date. So, I will not say that I don't think she is worth what

> she is being paid but I certainly am not impressed by anything she did.? I

> will use the cream and the thumb splint for a while and see how things

> progress. Probably will look to set an appointment in the future with a

> different rheumatologist if things do not improve. This weather is certainly

> playing havoc on my hands & wrist. My knees are beginning to bother me with

> the cool wet?weather moving in but I can deal with them ok.

>

> So much for a quick update, these always end up longer then I expect.

>

> Veri & Jaye 14 poly

>

>

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Izzy,

We have not looked for new shoes yet but plan to do that in a couple weeks after

my next payday. I do not have $100 plus in my budget for new shoes right now but

will have to juggle peter and paul to find some $$. It seems each time I think I

am about caught up something else arises and I have to juggle the budget. As it

is I am having to take off of work to go to these appointments and am nearly?out

of sick leave.? I am not complaining just taking it day to day and trying to

figure out if there is any way I can find time to take a third job for some

extra $.?

I do not know much about shoes but figure that I will ask those on this list for

suggestions for the best brands.? I remember when paying $50 for a pair of shoes

was really extravagant, now it is the lower side of normal, so sad.?

Veri & Jaye 14 poly

Re: Update

My orthotists recommended that I wear New Balance Sneakers.... the insert

out to fit my AFO-s ankle foot orthosis... mine come to my ankles so thats

what they call them it seems. blah... Anyways, New balance has all kinds of

styles and I'm sure they have high tops too. I bet the high tops support her

ankles and the orthotics will likely help a lot with that if they aren't

just the insert kind of orthotics. Anyways, that was the main brand

recommeded to me. Even my Nike's weren't good enough... lol.

Good fortune

On Fri, Oct 24, 2008 at 1:19 PM, <veristroud@...> wrote:

>

> Wow, isn't life busy. This morning my daughter Kristie Jo came up to me and

> said, " Hey Mom, did you realize that 2 months from today is Christmas Eve? " ?

> The older I get the faster time goes, hummm. Anyway, I thought I would post

> a quick update on what?we found out at our appointments.

>

> saw the podiatrist and they casted her feet for orthotics I think is

> what they are called. Of course the doctor told her that she needs to get

> some better shoes to put them in then the ones she was wearing. I did like

> that because I had told her she needed to wear her good shoes more often.

> She seems to think that her cheap shoes do not help her feet much better

> then the more expensive ones. We will be getting a new pair in the next

> couple of weeks once her orthotics arrive. Right now she wants to wear her

> red canvas hightop sneekers.? Jaye sees the rheuym on November 12th

> just a week before I leave for Paraguay.? So whats another day off from

> work.?hmmm.

>

> As for me, I met a new rheumatologist in Wichita and was not impressed. Not

> because she did not know what she was doing but because of her soft voice

> and her irritation when I had to have her keep repeating herself. I am hard

> of hearing and am unable to wear my hearing aid. Even after I explained to

> her that I could not hear her because I was hard of hearing she did not

> raise her voice any and continued to seem irritated when I asked her to

> repeat what she was telling me. It is not like I had someone there with me

> to tell me later. I assume that she knows what she is doing but am not

> convinced. She looked at my fingers and first said that there is no

> swelling. When I put the two hands together and asked then why is one hand

> considerably larger then the other one she decided that maybe I do have some

> swelling. She seems to think that I might have osteoarthritis?but that was a

> maybe,?and she gave me a cream to put on my thumb joints. She told me to

> quite taking the mobic since it does not seem to be helping much. She

> ordered a thumb splint/brace thing which I have not been able to get back to

> Wichita to get fit for yet and let me go. She did not order any lab work or

> anything, did not even suggest that I come back for a followup appointment

> at a future date. So, I will not say that I don't think she is worth what

> she is being paid but I certainly am not impressed by anything she did.? I

> will use the cream and the thumb splint for a while and see how things

> progress. Probably will look to set an appointment in the future with a

> different rheumatologist if things do not improve. This weather is certainly

> playing havoc on my hands & wrist. My knees are beginning to bother me with

> the cool wet?weather moving in but I can deal with them ok.

>

> So much for a quick update, these always end up longer then I expect.

>

> Veri & Jaye 14 poly

>

>

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Yeh.. these econonmic times are REALLY hard and having a child with a

chronic illness just ADDS to it all!!

I would say go to the sites ahead of time to look for discounts too b/c so

often their are cupons on websites that sell these brands.. it's amazing.

Especialy when you order stuff online.... I have gotten fairly good at

finding discounts offered... codes and thigns to get free shipping etc...

let me know if I can send you some information on that.

THey are pretty expensive shoes for sure... 80-100 bucks but they are

durable for sure. My mom really had to struggle with this stuff with me b/c

I hafe ad horrid feet and just terrible on shoes since i was very little so

it has always been high cost shoes to get the best longevity out of them!!

I have been particpainting abit in some NON medication involved clincal

trials and focus group type things which has been giving me a little extra

money every couple of months when I qualify for one and so on. That has been

useful.

Anyways, good fortune. :)

Issadora

On Fri, Oct 24, 2008 at 2:55 PM, <veristroud@...> wrote:

> Izzy,

>

> We have not looked for new shoes yet but plan to do that in a couple weeks

> after my next payday. I do not have $100 plus in my budget for new shoes

> right now but will have to juggle peter and paul to find some $$. It seems

> each time I think I am about caught up something else arises and I have to

> juggle the budget. As it is I am having to take off of work to go to these

> appointments and am nearly?out of sick leave.? I am not complaining just

> taking it day to day and trying to figure out if there is any way I can find

> time to take a third job for some extra $.?

> I do not know much about shoes but figure that I will ask those on this

> list for suggestions for the best brands.? I remember when paying $50 for a

> pair of shoes was really extravagant, now it is the lower side of normal, so

> sad.?

>

> Veri & Jaye 14 poly

>

> Re: Update

>

> My orthotists recommended that I wear New Balance Sneakers.... the insert

> out to fit my AFO-s ankle foot orthosis... mine come to my ankles so thats

> what they call them it seems. blah... Anyways, New balance has all kinds of

> styles and I'm sure they have high tops too. I bet the high tops support

> her

> ankles and the orthotics will likely help a lot with that if they aren't

> just the insert kind of orthotics. Anyways, that was the main brand

> recommeded to me. Even my Nike's weren't good enough... lol.

>

> Good fortune

>

> On Fri, Oct 24, 2008 at 1:19 PM, <veristroud@...<veristroud%40aol.com>>

> wrote:

>

> >

> > Wow, isn't life busy. This morning my daughter Kristie Jo came up to me

> and

> > said, " Hey Mom, did you realize that 2 months from today is Christmas

> Eve? " ?

> > The older I get the faster time goes, hummm. Anyway, I thought I would

> post

> > a quick update on what?we found out at our appointments.

> >

> > saw the podiatrist and they casted her feet for orthotics I think

> is

> > what they are called. Of course the doctor told her that she needs to get

> > some better shoes to put them in then the ones she was wearing. I did

> like

> > that because I had told her she needed to wear her good shoes more often.

> > She seems to think that her cheap shoes do not help her feet much better

> > then the more expensive ones. We will be getting a new pair in the next

> > couple of weeks once her orthotics arrive. Right now she wants to wear

> her

> > red canvas hightop sneekers.? Jaye sees the rheuym on November

> 12th

> > just a week before I leave for Paraguay.? So whats another day off from

> > work.?hmmm.

> >

> > As for me, I met a new rheumatologist in Wichita and was not impressed.

> Not

> > because she did not know what she was doing but because of her soft voice

> > and her irritation when I had to have her keep repeating herself. I am

> hard

> > of hearing and am unable to wear my hearing aid. Even after I explained

> to

> > her that I could not hear her because I was hard of hearing she did not

> > raise her voice any and continued to seem irritated when I asked her to

> > repeat what she was telling me. It is not like I had someone there with

> me

> > to tell me later. I assume that she knows what she is doing but am not

> > convinced. She looked at my fingers and first said that there is no

> > swelling. When I put the two hands together and asked then why is one

> hand

> > considerably larger then the other one she decided that maybe I do have

> some

> > swelling. She seems to think that I might have osteoarthritis?but that

> was a

> > maybe,?and she gave me a cream to put on my thumb joints. She told me to

> > quite taking the mobic since it does not seem to be helping much. She

> > ordered a thumb splint/brace thing which I have not been able to get back

> to

> > Wichita to get fit for yet and let me go. She did not order any lab work

> or

> > anything, did not even suggest that I come back for a followup

> appointment

> > at a future date. So, I will not say that I don't think she is worth what

> > she is being paid but I certainly am not impressed by anything she did.?

> I

> > will use the cream and the thumb splint for a while and see how things

> > progress. Probably will look to set an appointment in the future with a

> > different rheumatologist if things do not improve. This weather is

> certainly

> > playing havoc on my hands & wrist. My knees are beginning to bother me

> with

> > the cool wet?weather moving in but I can deal with them ok.

> >

> > So much for a quick update, these always end up longer then I expect.

> >

> > Veri & Jaye 14 poly

> >

> >

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  • 2 weeks later...

Hope you have some answers soon. The key is getting Isabella's

swelling and pain gone and it sounds like she is doing better. Hope

the Naprosyn continues to work for her --- anytime the medications

are working is progress.

But that is strange to get low blood cell counts and I have no idea

what that means. I had low white blood cell counts this summer but

then they retested a month later and it was normal so hoping it's

just a virus she is getting over and that it's nothing significant

too.

-Hadley (Isabelle, 4 yrs. Pauci JRA)

>

> Okay so last week I decided to make an appointment with Isabella's

> rhuematologist. He was impressed with the improvement Isabella has

made

> and such. He didnt see anything wrong and was happy to see there

was no

> problems...There was blood tests and xrays taken. Well I had not

heard

> the results yet so I called yesterday and left a message with the

> nurse. She called me back this morning and not soo good news. I am

very

> bummbed out! Isabellas blood count is low.... low..So the nurse

> recommended we go to our pedi today and get a nother blood count

done

> asap. She wanted to make sure that there was surely a machine error

but

> nope. Isabella has very low blood count and their not sure why. So

now

> we are off of the naproxin. Tomorrow morning we go back to the pedi

to

> get more blood work done to see if Isabella is anemic and some

other

> stuff. The doc said it looked like her red blood count was being

broken

> down.... im not sure what that means .. as far as whats wrong with

her

> or what is possibly going on with her blood. So depending on what

the

> blood tests say tomorrow we will go another route to assure her

blood

> count is up! Kind of rambling as I am still way confused and not

sure

> whats going on.... just thought I would update you guys..

>

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