Scared

[Guest guest]

,

Your sounds like a very special young lady. To understand and believe at her young age that God has a special plan for her is amazing. To see that what she is going through now she may be able to use to help others at a later date is awesome. And yes I agree with you, our kids are a rainbow.

Veri & Jaye 13 poly

Re:Scared

Hello Posey Family

Please know that fear is a very valid feeling.

It is only natural to want to grab your son and RUN.

My daughter was diagnosed back in February but as a mum i just KNEW something was wrong with her the year before and i started attending doctors.

To counter your fear educate yourself. Just because one child is sick doesnt mean that all children are, there are ups and downs with JIA as there are with life.

We all go from happy to sad to distraught to smiling about what we are seeing and how our kids amaze us. If i could reach out and hug you just now i would. We have all been where you are, i didtn get out of bed for 3 days last week as i was just so down and depressed. So i understand how you are feeling.

We all deal with stress and despair in very different ways. We are all human and entitled to cry. Some of us eat junk food to comfort us, turn to God, surround ourselves with friends and family, ask questions in the forum or just throw pillows around when the kids are unwell.

I try not to show my fear when is in pain or sporting a nice new swelling, i save up all my fears for when she is in bed and end up on my soapbox in here.

How strong we appear to be in front of our children is important. If they see us in fear it increases their fear! i am not sayin it is wrong to cry with your child but i do try my best to only let her see glimpses of my pain so she knows that i am as upset as she is at the changes in her body BUT that this is the way God made her and we dont question what his plans are for her.

She thinks he wants her to have this so that she can help other children when she is grown up. She has found different ways of doing things that amaze me and make her doctors grin.

As each form of arthritis is different it is best to throw questions at some of the mums whos child has the form or arthritis your child has. It never fails to amaze me the different forms or arthritis and how each one affects our children differently.

Your child is a rainbow. Arthritis is only one small colour that makes up you little rainbow. There is a whole person beyond his illness. and no doubt a pot of gold at the end of it

As says her arthritis isnt WHo she is its what she has!

Hugs and prayers

and wee (11) Enthesitis Related Arthritis HLA B27+

West Coast of Scotland ( near Glasgow)

Answers - Get better answers from someone who knows. Try it now.

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

[Guest guest]

Hugs! I know it all seems overwhelming and

that it can be quite scary. I totally agree with , educating yourself is

the best thing you can do to counteract that fear. Know that some kids will go

into complete remission, some will be well controlled with meds, and some will

struggle for longer than others. It is shown that being aggressive when first

diagnosed helps to prevent complications and problems in the future. Always

remember that you are your child’s best advocate, and that drs do not

always have every answer we would like them to have. We are at a point in

time where our kids are getting the benefits of lots of research that can and

does help them. Even in the past 7 years (wow – October will be 7 years

since I wandered into this wonderful group!) I have seen changes in treatment.

New drugs, new ideas, new ways to help the kids – that is what keeps our

hopes up. Read about all the wonderful teens, young adults and adults who were

diagnosed years ago and see what full lives they lead.

Feel free to vent your fears and anger

here. We have all done it from time to time. It does help. The Arthritis

Foundation website www.arthritis.org has

lots of free pamphlets that you can send for to help with your research. Getting

involved in the Arthritis Walks is something that helps my family feel pro

active in dealing with this disease and we are raising money for more research.

About SS, I think some here have looked

into it. Perhaps they can post and help you out with that.

Hope this helps some, Michele ( 20,

spondy)

From: [mailto: ] On Behalf Of Posey family

Sent: Monday, August 27, 2007 6:16

PM

Subject: Scared

I have been reading all the posts, doing research and

am really scared for my son.

I also wanted to know if any of you recieve SS for your

child? I was told I should be able to get it for my son.

[Guest guest]

Dave,

It is very scary to find out you have this condition, especially at first. I spent months of sleepless nights on the internet after finding out my son has this condition. It gets much easier as time goes on and you realize that life goes on and you adapt. My Dad is a retired police officer and does not have hearing in one ear after sticking a pencil in his ear as a child and the eraser was left in for months! He had a successful career as I am sure you will. The good news is there are many areas you can work in as a police officer also. My dad was on the road and Sergeant of the Swat Team in Fort Lauderdale.

You will spend allot of time doing research on cholesteatoma, you will have your surgery and do what you have to do to heal, and as time goes on it will consume less of your life.

The most important thing you need to do is make sure you have the best DR in your area.

Good luck,

Scared

I am a 32yrs old male who just got some bad news in regards to my hearling loss in my left ear. The ENT doctor noticed that the top of my left eardrum was sucked into my middle ear. I went and got a CAT scan and it showed that I had a C-toma that appeared to be wrapped up against one of my ear bones. The doctor stated that i will need to have probably two surgeries. One to get the C-toma out and to repair my ear drum and then 6mos later he would go in and try to repair my hearing. I guess what worries me is that like a lot of you I really depend on my hearing. I am a police officer and I don't want to put myself or anyone else in danger by not hearing everything. My right ear hears just fine. I guess I am just looking for some encouragement. The doctor told me I could schedule surgery in a few months but i wanted to get it out of the way so I go in on Set 21. Needless to say I am scared to death as I have never really been put under general anestesia. Guess I am just looking for some positive stories to kind of lift my spirits. My doctor is out of Indy and although he is young he says he does this type of surgery a few times a week. Looking forward to some responses thank you.Dave

[Guest guest]

Stacey, Thank you for your reply. You know what you are right. Its something i will have to deal with and hopefully as time goes on it gets easier as Im sure it will. I have been a police officer for 10yrs and I really enjoy it. I work in a suburb just north of Indy and I have a pretty good ear surgeon.] s Indy seems to have quite a few He seems pretty confident so that makes me feel a little better. I guess all these horror stories of surgeries gone bad are just weighing on my mind a little. Thanks again for the reply Stacey I appreciate it.nels4487@... wrote: Dave, It is very scary to find out you have this condition, especially at first. I spent months of sleepless nights on the internet after finding out my son has this condition. It gets much easier as time goes on and you realize that life goes on and you adapt. My Dad is a retired police officer and does not have hearing in one ear after sticking a pencil in his ear as a child and the eraser was left in for months! He had a successful career as I am sure you will. The good news is there are many areas you can work in as a police officer also. My dad was on the road and Sergeant of the Swat Team in Fort Lauderdale. You will spend allot of time doing research on cholesteatoma, you will

have your surgery and do what you have to do to heal, and as time goes on it will consume less of your life. The most important thing you need to do is make sure you have the best DR in your area. Good luck, Scared I am a 32yrs old male who just got some bad news in regards to my hearling loss in my left ear. The ENT doctor noticed that the top of my left eardrum was sucked into my middle ear. I went and got a CAT scan and it showed that I had a C-toma that appeared to be wrapped up against one of my ear bones. The doctor stated that i will need to have probably two surgeries. One to get the C-toma out and to repair my ear drum and then 6mos later he would go in and try to repair my hearing. I guess what worries me is that like a lot of you I really depend on my hearing. I am a police officer and I don't want to put myself or anyone else in danger by not hearing everything. My right ear hears just fine. I guess I am just looking for some encouragement. The doctor told me I could schedule surgery in a few months but i wanted to get it out of

the way so I go in on Set 21. Needless to say I am scared to death as I have never really been put under general anestesia. Guess I am just looking for some positive stories to kind of lift my spirits. My doctor is out of Indy and although he is young he says he does this type of surgery a few times a week. Looking forward to some responses thank you.Dave

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[Guest guest]

Dave,

I wish you the best of luck. Let us know how your surgery goes.

Scared

I am a 32yrs old male who just got some bad news in regards to my hearling loss in my left ear. The ENT doctor noticed that the top of my left eardrum was sucked into my middle ear. I went and got a CAT scan and it showed that I had a C-toma that appeared to be wrapped up against one of my ear bones. The doctor stated that i will need to have probably two surgeries. One to get the C-toma out and to repair my ear drum and then 6mos later he would go in and try to repair my hearing. I guess what worries me is that like a lot of you I really depend on my hearing. I am a police officer and I don't want to put myself or anyone else in danger by not hearing everything. My right ear hears just fine. I guess I am just looking for some encouragement. The doctor told me I could schedule surgery in a few months but i wanted to get it out of the way so I go in on Set 21. Needless to say I am scared to death as I have never really been put under general anestesia. Guess I am just looking for some positive stories to kind of lift my spirits. My doctor is out of Indy and although he is young he says he does this type of surgery a few times a week. Looking forward to some responses thank you.Dave

Choose the right car based on your needs. Check out Autos new Car Finder tool.

[Guest guest]

o first of all what is your dose, how long you been on.. and what is

your diagnosis,, any other drugs you take?

>

> I was sitting onlime minding my own business and I got very paranoid

> and I am now having anxiety from my paranoia and am scared I would

> even get paranoid. I am on my 4th day of almost no sleep. I am so

> tired but cannot sleep. I was fine until I got paranoid. I am

> wondering is this normal from this drug? It really upset me. I just

do

> not want to be crazy or go crazy or end up in a mental hospital.

> help.

>

[Guest guest]

5mg have been taking it for 4 days for anxiety and depression. no

other drugs or any herbs on it. i started taking it last thurs slept

3 hrs fri slept 1 hr sat night didnt take it so i could switch to

morning. slept that night w/o it took it morning didnt sleep well

that night maybe 3-4 hrs and last night i didnt sleep until 7 am or

so until 10 am.

> >

> > I was sitting onlime minding my own business and I got very

paranoid

> > and I am now having anxiety from my paranoia and am scared I

would

> > even get paranoid. I am on my 4th day of almost no sleep. I am

so

> > tired but cannot sleep. I was fine until I got paranoid. I am

> > wondering is this normal from this drug? It really upset me. I

just

> do

> > not want to be crazy or go crazy or end up in a mental

hospital.

> > help.

> >

>

[Guest guest]

if your being treated for anxiety, and you think you have paranoid

thoughts, first of all you haven't been on it long enough to really

experience side effects, unless you are giving yourself side effects.

secondly, your prob on to low of a dose, talk to your doc, if he

won't listen to you TOMORROW, then go to the ER. you shouldn't be

have strange side effects, unless you are stressing out and giving

them to yourself.DON'T STOP TAKING IT COLD TURKEY , get a secong

opinion and make sure this is the drug for you. and check out the web

site for lexapro.. read the small print!!!! or have someone read it

for you thats got a little medical back ground.. you could be normal

after all....

>

> I was sitting onlime minding my own business and I got very

paranoid

> and I am now having anxiety from my paranoia and am scared I would

> even get paranoid. I am on my 4th day of almost no sleep. I am so

> tired but cannot sleep. I was fine until I got paranoid. I am

> wondering is this normal from this drug? It really upset me. I just

do

> not want to be crazy or go crazy or end up in a mental hospital.

> help.

>

[Guest guest]

The paranoia can be a result of sleep deprivation. If you can't get ahold of

your doctor now get to the ER.

Some people can take Benadryl to help them sleep. This is also the active

ingredient in Tylenol sleep aid and a few other over-the-counter sleep meds.

Diphenhydramine. In this situation I'm not sure I'd advise taking anything else

for the moment.

The thing is you *need* sleep. Whether the Lex is causing these sides only a

doctor versed in these kinds of meds can tell you for sure. Looking back I see

you've only been on the Lex for 4 days. Stop taking it. You're at a low enough

dose and you've been on it for such a very short time that stopping cold turkey

doesn't apply to you. Contact your doc ASAP.

Barbara

Re: Scared

if your being treated for anxiety, and you think you have paranoid

thoughts, first of all you haven't been on it long enough to really

experience side effects, unless you are giving yourself side effects.

secondly, your prob on to low of a dose, talk to your doc, if he

won't listen to you TOMORROW, then go to the ER. you shouldn't be

have strange side effects, unless you are stressing out and giving

them to yourself.DON'T STOP TAKING IT COLD TURKEY , get a secong

opinion and make sure this is the drug for you. and check out the web

site for lexapro.. read the small print!!!! or have someone read it

for you thats got a little medical back ground.. you could be normal

after all....

>

> I was sitting onlime minding my own business and I got very

paranoid

> and I am now having anxiety from my paranoia and am scared I would

> even get paranoid. I am on my 4th day of almost no sleep. I am so

> tired but cannot sleep. I was fine until I got paranoid. I am

> wondering is this normal from this drug? It really upset me. I just

do

> not want to be crazy or go crazy or end up in a mental hospital.

> help.

>

[Guest guest]

I will call his office tomorrow morning. Alot of people have said

this is a sideeffect from the med and it goes away. It even says so

on the website. Thanks for ur responses.

> >

> > I was sitting onlime minding my own business and I got very

> paranoid

> > and I am now having anxiety from my paranoia and am scared I

would

> > even get paranoid. I am on my 4th day of almost no sleep. I am

so

> > tired but cannot sleep. I was fine until I got paranoid. I am

> > wondering is this normal from this drug? It really upset me. I

just

> do

> > not want to be crazy or go crazy or end up in a mental

hospital.

> > help.

> >

>

>

>

>

>

>

[Guest guest]

It's not necessarily from the drug. The paranoia could very well be from lack of

sleep. Even people who aren't on any drugs will get paranoid after so many days

of no or little sleep. The body is not made to go so long without sleep.

I'd call my doctor, though.

Colleen

dog_lover_la <dog_lover_la@...> wrote:

I was sitting onlime minding my own business and I got very paranoid

and I am now having anxiety from my paranoia and am scared I would

even get paranoid. I am on my 4th day of almost no sleep. I am so

tired but cannot sleep. I was fine until I got paranoid. I am

wondering is this normal from this drug? It really upset me. I just do

not want to be crazy or go crazy or end up in a mental hospital.

help.

[Guest guest]

Don't confuse paranoia with anxiety. They're two entirely different things. At

any rate, I'm glad to hear you'll call your doc.

Barbara

Re: Scared

I will call his office tomorrow morning. Alot of people have said

this is a sideeffect from the med and it goes away. It even says so

on the website. Thanks for ur responses.

> >

> > I was sitting onlime minding my own business and I got very

> paranoid

> > and I am now having anxiety from my paranoia and am scared I

would

> > even get paranoid. I am on my 4th day of almost no sleep. I am

so

> > tired but cannot sleep. I was fine until I got paranoid. I am

> > wondering is this normal from this drug? It really upset me. I

just

> do

> > not want to be crazy or go crazy or end up in a mental

hospital.

> > help.

> >

>

>

>

>

>

>

[Guest guest]

So I spoke with my Dr. this morning and he said to STOP asap and that

I am having a side effect called askicia or something like that. I am

happy I know what is wrong but sad that I have to now find a med that

works and I do not want to go through this again!

>

> I was sitting onlime minding my own business and I got very paranoid

> and I am now having anxiety from my paranoia and am scared I would

> even get paranoid. I am on my 4th day of almost no sleep. I am so

> tired but cannot sleep. I was fine until I got paranoid. I am

> wondering is this normal from this drug? It really upset me. I just

do

> not want to be crazy or go crazy or end up in a mental hospital.

> help.

>

[Guest guest]

what the???

>

> The brain zaps are gone! It is official I am off Lexapro!

>

> p.s. I saw satan at my workplace. He has a stronghold there due to

all the weak christians in that place that let themselves be used by

him.

>

>

> ---------------------------------

> Never miss a thing. Make your homepage.

>

>

[Guest guest]

Good grief. Would you knock off the religious crap?

Colleen

Yvette <patmyback_99@...> wrote:

The brain zaps are gone! It is official I am off Lexapro!

p.s. I saw satan at my workplace. He has a stronghold there due to all the weak

christians in that place that let themselves be used by him.

---------------------------------

Never miss a thing. Make your homepage.

[Guest guest]

Maybe they need an anti-psychotic?

Re: Re: Scared

Good grief. Would you knock off the religious crap?

Colleen

Yvette <patmyback_99@...> wrote:

The brain zaps are gone! It is official I am off Lexapro!

p.s. I saw satan at my workplace. He has a stronghold there due to all the

weak christians in that place that let themselves be used by him.

---------------------------------

Never miss a thing. Make your homepage.

[Guest guest]

Somebody sure does.

Colleen

<rroobbeerrtt@...> wrote:

Maybe they need an anti-psychotic?

Re: Re: Scared

Good grief. Would you knock off the religious crap?

Colleen

Yvette

wrote:

The brain zaps are gone! It is official I am off Lexapro!

p.s. I saw satan at my workplace. He has a stronghold there due to all the weak

christians in that place that let themselves be used by him.

---------------------------------

Never miss a thing. Make your homepage.

[Guest guest]

It's taken care of.

Anyone who insists on continuing with this will be set to have all their posts

moderated.

Barbara

Re: Re: Scared

Good grief. Would you knock off the religious crap?

Colleen

Yvette

wrote:

The brain zaps are gone! It is official I am off Lexapro!

p.s. I saw satan at my workplace. He has a stronghold there due to all the

weak christians in that place that let themselves be used by him.

---------------------------------

Never miss a thing. Make your homepage.

[Guest guest]

No more. Take it somewhere else if you wish to discuss religion.

[Guest guest]

You may want to mention this problem you have to your mental health clinician...

<stacygirl_8@...> wrote: Yea, he's in this email group too.

Yvette

wrote: The brain zaps are gone! It is official I am off Lexapro!

p.s. I saw satan at my workplace. He has a stronghold there due to all the weak

christians in that place that let themselves be used by him.

---------------------------------

Never miss a thing. Make your homepage.

[Guest guest]

I know how you feel. I started using the Humira 5 weeks ago and I was

very nervous to start it. I use the click pen and I am a big wimp with

needles (Even though they are constantly doing blood work) I found

that my injection really doesn't hurt, it just burns for a few

minutes. I usually have a headache the day I do the injection but

other than that I have had no side effects. It has helped me so far

which I am very thankful for! Good luck with it and try not to stress

out too much, it's not that bad!

[Guest guest]

I also felt sick the day after my MTX dose but I've had absolutely no

side effects with Humira. I've been on it for more than a year. It's

really helping me. I was nervous about giving myself the shot, but the

pen makes it really easy. Humira is my friend.

" S. Zorzi " <szorzi_1999@...>

[Guest guest]

I know exactly how you feel! I started taking Humira almost 3 weeks

ago. The nurse did my first injection with a syringe (I'll be using

the pen injectors from now on), and I had to do my first injection by

myself last Friday. I iced the area on my thigh really, really good

first and finally got up the nerve to push the button. I couldn't feel the

needle at all, just the burning sensation of the medicine going into my leg. It

was a huge relief to know I could actually do it, and I know now it will only

get easier. I already feel better after only two injections, so I'm very happy

with Humira so far. The MTX just wasn't doing the job by itself anymore. Good

luck!

" badgerlady1960 " <badgerlady1960@...>

[Guest guest]

That has not been determined. Until clinical studies are done it can't be

determined. We do our best now by taking it slowly and consulting with our

physicians.

My son's pediatrician felt that this was a safe dose for my then 6 yr old

who weighed around 60lbs. He took this dose for about 7 months (well the

first two months we worked up to this dose increasing a little every week or

two.) We stopped due to non-compliance on taking his supplements. We have

recently started again.

You also get some vitamin E in ProEFA and ProEPA. It isn't much, but if you

are taking multiple tablets I guess that would be something to consider as

well. We didn't see improvement with multiple dosing so our son just takes

2 ProEFA and 1 ProEPA once a day, not the same multiple times a day like

others do.

Miche

On Thu, Oct 2, 2008 at 11:38 AM, katedb2003 <madenbleyker@...>wrote:

> Hi

>

> I read some of the recent posts. So what are people feeling IS a safe

> amount of E--both d-alpha and gamma?

>

> Is 800 iu of d-alpha and 400mg gamma daily for my 54 pound 7 year old

> too much?

>

> Thanks

>

[Guest guest]

I admit it initially creeped me out knowing I had the scs. Especially when

charging for some reason. A few times I actually had to turn it off because I

couldn't stop thinking about it!!!! But the benefits I received from my scs

were so great, I realized I was being ridiculous. People get pacemakers, metal

plates, etc. That creepy feeling didn't last long!!!!

Take Care,

B. in TEXAS

________________________________

From: Diane <dper2000@...>

Stimulator

Sent: Friday, February 20, 2009 5:50:32 PM

Subject: SCARED

I get on here daily, many times during the day I see the wonderful

results that people are having, but in the back of my mind I get

scared. It seems creepy at times to think of a foreign object in my

body.

I got a Bachelor Degree in community and Human Services while

disabled. I had most of the major courses done in a classroom but

did the rest online. I went to my psych exam and knew I could pass it

with flying colors until my breathing, mostly through my chest, was

brought up as someone very anxious, my mother-inlaw lives with me

with demenita.I feel like I am someome mentally and physically in

jail. I would love to walk even if it were around the block with my

three year old grandson like the old days. I want so much more for

myself then sitting around watching tv. MY big night on the town is

going to physical therapy. My husband is basically bedridden but has

been getting up more. He goes in a few weeks and is going through

with the SCS. I want so much more for myself and pray that I can have

the results that many of you have. I read everything everyone writes

everyday, have any of you been so scared it was hard to make the

descision? I feel paraylyzed by fear and at othertimes I am ready to

go forward. Any suggestions? Anyone been through this? Thank-You to

everyone in the group. I used to be so happy go lucky all the time it

worries me to be in such a funk. I did go to 10 sessions of

counseling. I think the best therapy is to to talk to people who have

been where I am. Thanks to you all.