Jump to content
RemedySpot.com

IM new here

Rate this topic


Guest guest

Recommended Posts

Guest guest

Welcome e...I too am new here and there are some fantastic people on this

list. It is a worth of information and support here!

A little about me (us) I have a 2 year old daughter that was diagnosed

in June with Poly JRA. We are now on enbrel, metho, prednesone (weening), folic

acid and naproxen. It is hard with , I never know if she is in pain...she

is to little to tell me.

Anyway, glad you have joined us.

Tara and 2 (poly)

Im new here

Hi all~

My names e.

I am 28 y/o and I have had JRA all my life. It's polyarticular.

I have not had any operations yet.Although~ some days I wish they

would take a few of my joints away. LOL As far as meds, I am

currently on Enbrel shots, dicolfenac and prednisone. Im supposed to

be wheening(sp?) my way off of the prednisone. Im at 2mg a day and

its no biggie, i know. But I am supposed to getting myself off of

it. I probably should be off of it by now.

I dont work, except here in my home. Which is a handful sometimes. i

dont have kids yet. I have been married for 8 years. We are ttc. But

thinking on moving to IVF soon. I hope that when I do become pg. the

arthritis goes into remission a bit. I have been in remission when I

was in high school. then it came back pretty strong.

I was on mtx. for like ever. then they switched me to mtx.

injectible, but when we wanted to have a baby I was switched to

prednisone.

Hmmm.. I feel like im in the Rhematologist office...

Oh.. more about me, My DH is ADAF, and we are currently stationed in

Germany. I see a military rheumatologist. This is our second base in

7 years, but we just moved herein Apr. So far welove it. We have

already had some company. Which was fun.

When I was a kid I attened JRA camp, in Estes park colo. When we

were in the states I wanted to help out at a camp, but I never got a

good contact person. And now that I am living over seas Im not sure

if there is such a thing. But I would love to help out any way I

could. So if someone has some info on that sort of thing let me

know.

And if you have any more specific questions, please ask.

This is my first JRA board I have belonged to, but I hope to learn

and to educate while I am here.

Sorry im so long winded. Its hard to do the whloe life in a nutshell

with JRA. LOL

~e

Link to comment
Share on other sites

Guest guest

Hi e,

Welcome to the list,I am sure you will have lots to offer to us moms trying

to deal with the ups and downs of JRA.It's always nice to hear from adults who

have lived through this for years and willing to help.It just goes to show how

strong our kiddos are and a reasurance that no matter what ,our kids just

keep getting stronger and turn in to REMARKABLE adults.

Hugs

Becki and 6systemic

Link to comment
Share on other sites

Guest guest

Hi e,

Welcome to the and we also welcome your perspective as

a " young adult " as defined by the rheumies. There are a handful of

others on this list that are also young adults and some talking

about having children too. Of course they'll pipe in to you soon.

I wish you the best in getting pregnant. It's worth everything you

have to go through.

Stacia and Hunter 8 systemic iritis

Link to comment
Share on other sites

Guest guest

AWW! Thanks for implying I am remarkable. Actually I like to think of

myself as a tough slightly calloused cookie. LOL

~e

Re: Im new here

Hi e,

Welcome to the list,I am sure you will have lots to offer to us moms

trying

to deal with the ups and downs of JRA.It's always nice to hear from

adults who

have lived through this for years and willing to help.It just goes to

show how

strong our kiddos are and a reasurance that no matter what ,our kids

just

keep getting stronger and turn in to REMARKABLE adults.

Hugs

Becki and 6systemic

Link to comment
Share on other sites

Guest guest

Hi e:

Welcome to a great list. This list has been a God send to me. I have

learned so much and learn something new all the time.

Is this the first time you have lived out of the states? What's Germany

like?

Good luck on the pregnancy.

Take care.

Patty

Link to comment
Share on other sites

Guest guest

Hello e

Welcome to the group. I am also one of the young adults, I have been

with this group from the start. Just don't post here as much as I use

to. I know a brandie that has had juvenile arthritis, Not sure if this

is you but it sounds like it. Did u use to live in North Corlina? This

a great group of people here. Until Next time take care.

> Hi all~

> My names e.

> I am 28 y/o and I have had JRA all my life. It's polyarticular.

> I have not had any operations yet.Although~ some days I wish they

> would take a few of my joints away. LOL As far as meds, I am

> currently on Enbrel shots, dicolfenac and prednisone. Im supposed to

> be wheening(sp?) my way off of the prednisone. Im at 2mg a day and

> its no biggie, i know. But I am supposed to getting myself off of

> it. I probably should be off of it by now.

> I dont work, except here in my home. Which is a handful sometimes. i

> dont have kids yet. I have been married for 8 years. We are ttc. But

> thinking on moving to IVF soon. I hope that when I do become pg. the

> arthritis goes into remission a bit. I have been in remission when I

> was in high school. then it came back pretty strong.

> I was on mtx. for like ever. then they switched me to mtx.

> injectible, but when we wanted to have a baby I was switched to

> prednisone.

> Hmmm.. I feel like im in the Rhematologist office...

> Oh.. more about me, My DH is ADAF, and we are currently stationed in

> Germany. I see a military rheumatologist. This is our second base in

> 7 years, but we just moved herein Apr. So far welove it. We have

> already had some company. Which was fun.

> When I was a kid I attened JRA camp, in Estes park colo. When we

> were in the states I wanted to help out at a camp, but I never got a

> good contact person. And now that I am living over seas Im not sure

> if there is such a thing. But I would love to help out any way I

> could. So if someone has some info on that sort of thing let me

> know.

> And if you have any more specific questions, please ask.

> This is my first JRA board I have belonged to, but I hope to learn

> and to educate while I am here.

> Sorry im so long winded. Its hard to do the whloe life in a nutshell

> with JRA. LOL

> ~e

Link to comment
Share on other sites

Guest guest

~

No I used to live in North Dakota. Of course, not by choice, but as they

say home is where the AF sends us. LOL

Anyway~ It was nice to meet you. Thank you for the welcome!

~e

<http://www.geocities.com/ourwebnook>

Re: Im new here

Hello e

Welcome to the group. I am also one of the young adults, I have been

with this group from the start. Just don't post here as much as I use

to. I know a brandie that has had juvenile arthritis, Not sure if this

is you but it sounds like it. Did u use to live in North Corlina? This

a great group of people here. Until Next time take care.

> Hi all~

> My names e.

> I am 28 y/o and I have had JRA all my life. It's polyarticular.

> I have not had any operations yet.Although~ some days I wish they

> would take a few of my joints away. LOL As far as meds, I am

> currently on Enbrel shots, dicolfenac and prednisone. Im supposed to

> be wheening(sp?) my way off of the prednisone. Im at 2mg a day and

> its no biggie, i know. But I am supposed to getting myself off of

> it. I probably should be off of it by now.

> I dont work, except here in my home. Which is a handful sometimes. i

> dont have kids yet. I have been married for 8 years. We are ttc. But

> thinking on moving to IVF soon. I hope that when I do become pg. the

> arthritis goes into remission a bit. I have been in remission when I

> was in high school. then it came back pretty strong.

> I was on mtx. for like ever. then they switched me to mtx.

> injectible, but when we wanted to have a baby I was switched to

> prednisone.

> Hmmm.. I feel like im in the Rhematologist office...

> Oh.. more about me, My DH is ADAF, and we are currently stationed in

> Germany. I see a military rheumatologist. This is our second base in

> 7 years, but we just moved herein Apr. So far welove it. We have

> already had some company. Which was fun.

> When I was a kid I attened JRA camp, in Estes park colo. When we

> were in the states I wanted to help out at a camp, but I never got a

> good contact person. And now that I am living over seas Im not sure

> if there is such a thing. But I would love to help out any way I

> could. So if someone has some info on that sort of thing let me

> know.

> And if you have any more specific questions, please ask.

> This is my first JRA board I have belonged to, but I hope to learn

> and to educate while I am here.

> Sorry im so long winded. Its hard to do the whloe life in a nutshell

> with JRA. LOL

> ~e

Link to comment
Share on other sites

Guest guest

Welcome e to the list. I am so glad that you are here!

and Rob 15 Spondy

On Fri, 06 Aug 2004 19:19:43 -0000 " e "

<chrisandbrandie@...> writes:

Hi all~

My names e.

I am 28 y/o and I have had JRA all my life. It's polyarticular.

I have not had any operations yet.Although~ some days I wish they

would take a few of my joints away. LOL As far as meds, I am

currently on Enbrel shots, dicolfenac and prednisone. Im supposed to

be wheening(sp?) my way off of the prednisone. Im at 2mg a day and

its no biggie, i know. But I am supposed to getting myself off of

it. I probably should be off of it by now.

I dont work, except here in my home. Which is a handful sometimes. i

dont have kids yet. I have been married for 8 years. We are ttc. But

thinking on moving to IVF soon. I hope that when I do become pg. the

arthritis goes into remission a bit. I have been in remission when I

was in high school. then it came back pretty strong.

I was on mtx. for like ever. then they switched me to mtx.

injectible, but when we wanted to have a baby I was switched to

prednisone.

Hmmm.. I feel like im in the Rhematologist office...

Oh.. more about me, My DH is ADAF, and we are currently stationed in

Germany. I see a military rheumatologist. This is our second base in

7 years, but we just moved herein Apr. So far welove it. We have

already had some company. Which was fun.

When I was a kid I attened JRA camp, in Estes park colo. When we

were in the states I wanted to help out at a camp, but I never got a

good contact person. And now that I am living over seas Im not sure

if there is such a thing. But I would love to help out any way I

could. So if someone has some info on that sort of thing let me

know.

And if you have any more specific questions, please ask.

This is my first JRA board I have belonged to, but I hope to learn

and to educate while I am here.

Sorry im so long winded. Its hard to do the whloe life in a nutshell

with JRA. LOL

~e

Link to comment
Share on other sites

Guest guest

Hello e and welcome to the best group of folks on the web. My name is

Donna and I too am a JA vet. I am 38 and have been dealing with the madness for

34 years. I am blessed to have 2 kids so if ya ever wanna chat about

pregnancy and parenting just drop me a line.

Hugs and smiles!

donna

Link to comment
Share on other sites

  • 1 year later...

Pain will vary person to person. I myself didn't experience too much pain,

mainly right after surgery, but they will have you on a morphine pump which

should eliminate any pain you may have. After you are taken off the

morphine, pain should be minimal.

Some people can feel the rod, others can't. If you are pretty thin, you may

be able to feel it.

The worst part of the surgery for me would have to be the Hospital Food. It

isn't very good at all. They will have you on a liquid diet for the first

few days (the jello isn't too bad), and then slowly put you on solids (not

good!). Otherwise my experience was pretty good. I was 12 when I had the

surgery. I really didn't have any complaints, the staff was great, I had a

little crush on my anesthesiologist ;) , I missed a whole month of school

and didn't have to take any finals, pain was minimal. I must admit though,

no being able to go out and be physically active during the summer was not

fun. I basically was only approved to go swimming for the longest time.

I hope this helps.

~

Im new here

Hello everyone im new here and I have a few questions.

First of all i havetn had surgery yet but, i was wondering about how

much pain can i expect from surgery? I am pretty healthy and, young(17).

Also can you feel the rod in your back after the surgery?

Finally, what the worst part of having the surgery?

Thanks to everyone in advance

Link to comment
Share on other sites

Hi...

Most of the subscribers to this group are older than you, so our

experience probably isn't as relevant as it could be. I'd like to

encourage you to join the National Scoliosis Foundations forums, where

there is a group of teens who have had surgery and who can answer your

questions.

http://www.scoliosis.org/forum/

Regards,

>

> Hello everyone im new here and I have a few questions.

>

> First of all i havetn had surgery yet but, i was wondering about how

> much pain can i expect from surgery? I am pretty healthy and, young(17).

>

> Also can you feel the rod in your back after the surgery?

>

> Finally, what the worst part of having the surgery?

>

> Thanks to everyone in advance

>

Link to comment
Share on other sites

Thanks alot for the information megan, one more question though how long like

months, didi it take you to get back into your regular schedule like outside

physical activites, etc.

Thanks again in advance :)

<meganmartin8602@...> wrote: Pain will vary person to person. I

myself didn't experience too much pain,

mainly right after surgery, but they will have you on a morphine pump which

should eliminate any pain you may have. After you are taken off the

morphine, pain should be minimal.

Some people can feel the rod, others can't. If you are pretty thin, you may

be able to feel it.

The worst part of the surgery for me would have to be the Hospital Food. It

isn't very good at all. They will have you on a liquid diet for the first

few days (the jello isn't too bad), and then slowly put you on solids (not

good!). Otherwise my experience was pretty good. I was 12 when I had the

surgery. I really didn't have any complaints, the staff was great, I had a

little crush on my anesthesiologist ;) , I missed a whole month of school

and didn't have to take any finals, pain was minimal. I must admit though,

no being able to go out and be physically active during the summer was not

fun. I basically was only approved to go swimming for the longest time.

I hope this helps.

~

Im new here

Hello everyone im new here and I have a few questions.

First of all i havetn had surgery yet but, i was wondering about how

much pain can i expect from surgery? I am pretty healthy and, young(17).

Also can you feel the rod in your back after the surgery?

Finally, what the worst part of having the surgery?

Thanks to everyone in advance

Link to comment
Share on other sites

Hi, my name is Randy and I'm 15. I had this surgery in August last year and

technically I'm still in recovery according to my dr. According to my doctor,

my surgery was successful. My pain was pretty bad the first couple of days

because they couldn't seem to get the morphine dosage right and then the tube

came out and they didn't discover it until I was in major pain but after about

the 3rd day the pain wasn't too bad. My doctor told me I couldn't do anything

physical for 6 months including riding my bike because if I fell I could do some

damage. So for the past 5 months the only thing I've done for fun is play video

games but last weekend my mom said I could finally go paintballing. I feel fine

right now but I still have to go to my 6 month dr. appt. to make sure that

everything is OK. I'm pretty sure he's going to let me go snowboarding. I

can't feel the rod but wait until you see your Xray with the rod in your back -

it is really cool!

When are you supposed to have your surgery? Let me know if you have anymore

questions.

Randy

Im new here

Hello everyone im new here and I have a few questions.

First of all i havetn had surgery yet but, i was wondering about how

much pain can i expect from surgery? I am pretty healthy and, young(17).

Also can you feel the rod in your back after the surgery?

Finally, what the worst part of having the surgery?

Thanks to everyone in advance

Link to comment
Share on other sites

I think it was about 6 months. But that was because my doctor told me not to

do much. I know I was swimming within a matter of weeks, but running, riding

a bicycle, roller blading and such had to wait about 6 months, just to make

sure the spine fused ok. I had the surgery in May of 1996, and I know that

during my 8th grade year, I hardly participated in P.E. that fall. I

remember the doctor telling me that I couldn't ride in a car for like 2

weeks, and couldn't swim for 3 or 4 weeks, but did I listen to him.not

really.. But I was extremely cautious in doing so. But as for stuff like

riding a bike and running I did wait until I got the ok from the doc.

Anything that you do that may put some stress on your spine if you fall, or

move around too much, I would suggest waiting until you get the ok, because

you can end up with a broken rod, or the spine not fusing right. ( which is

why they may tell you no extreme sports for quite a while.I was extremely

disappointed b/c I so desperately wanted to go sky diving..j/k!)

~

Im new here

Hello everyone im new here and I have a few questions.

First of all i havetn had surgery yet but, i was wondering about how

much pain can i expect from surgery? I am pretty healthy and, young(17).

Also can you feel the rod in your back after the surgery?

Finally, what the worst part of having the surgery?

Thanks to everyone in advance

Link to comment
Share on other sites

  • 3 years later...
Guest guest

Hi my name is Ann and I found your group and joined hoping someone could

help me with my problem.

I have been sick since October of 07 an Auto Immune disease that doesn't really

fit the medical books I its closest to Stills Disease a form of RA and Lupus in

one. I have stopped drinking milk I tried the no Gluten diet but that was so

hard on my being a low income family me on disability and having 4 kids I didn't

have days or weeks that I could have any food that was not Gluten free.

I did stop drinking coffee and wow what a diffrence and I have been on keto-7

DHEA and it too has done something for me that is good. I came down sick 4

months after having a partial hysterectomy. This is the thing that is getting me

really down be sides the joint pain and weakness I have chronic yeast

infections. I bought expensive pro biotic pills that stay in the fridge I take 3

a day lot of water and yogurt but still Im suffering bad.

My mom says it the Cellcept that I'm on for my disease fighting against my body.

Its an auto immune suppressant so my body will stop attacking its self I have a

really strong feeling my body could heal it self with diet and changes but dont

know what to eat or how to start could anyone help me. I have chronic yeast

infections in my girl part and Im going nuts with medicine and creams to help.

please help

Newbie Ann

Link to comment
Share on other sites

Guest guest

Hi Ann,

Welcome to our group! You have certainly come to the right place to get

yourself well again. A lot of us have been in the situation you are - in pain

with chronic flare-ups of various (auto-immune) disorders.

Bee's program is really great because it addresses all of your problems with one

solution - proper diet and supplements. What you need to do first is read so

that you understand how it all works, so that you can incorporate this into your

life.

The best place to start is here:

How to Successfully Overcome Candida

http://www.healingnaturallybybee.com/articles/intro2.php

Curing Candida, How to Get Started

http://www.healingnaturallybybee.com/articles/intro1.php

There is a lot of confusing and conflicting information, but many people on this

forum have improved their health by reading and following Bee's program. Here

are some Success Stories that will help to motivate you.

http://www.healingnaturallybybee.com/success/index.php

This really is the best place to be! After you've read, please get back to us

with any questions you might have.

Hope that helps!

Another

>

> Hi my name is Ann and I found your group and joined hoping someone

could help me with my problem.

>

<snip>

>

> I did stop drinking coffee and wow what a diffrence and I have been on keto-7

DHEA and it too has done something for me that is good. I came down sick 4

months after having a partial hysterectomy. This is the thing that is getting me

really down be sides the joint pain and weakness I have chronic yeast

infections. I bought expensive pro biotic pills that stay in the fridge I take 3

a day lot of water and yogurt but still Im suffering bad.

>

<snip>

>

> please help

> Newbie Ann

>

Link to comment
Share on other sites

  • 11 months later...
Guest guest

Hello if you would like to talk over the phone I am willing to do so.  My

number is 478-919-8813 and I live in Georgia.

 <FONT face= " comic sans ms " color=#ff0000 size=5> in Georgia </FONT><IMG

src= " http://us.i1.yimg.com/us.yimg.com/i/mesg/tsmileys2/04.gif " >

________________________________

From: anatole43019 <anatole43019@...>

achalasia

Sent: Sun, March 7, 2010 2:03:10 AM

Subject: im new here

 

Hi i am shawn im 27 and was diagnosed with achalasia 3 years ago i have lost

alot of weight since then and am considering surgury to get it fixed i just

wanted your oppinions thanks.

Link to comment
Share on other sites

Join the conversation

You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

Loading...
×
×
  • Create New...