Re: Re: newbie with many questions

[Guest guest]

hi lane, i'm kathy 42. i have been on 5mg prednisone since about november.

without it i feel like you are describing. so those are symptoms of ra. i am

now at the point where i have been approved for ssd, but 3 mos from long term

disability. i have been laid off friday. so i know about the no insurance

woes, nice of them to let me know i have 10 days left!!! ssi is more like a

welfare. i was told i make too much money to qualify. i don't understand if

you worked why you would not qualify? kathy in il

[Guest guest]

<< dr prescribed predizone for this shoulder flare-up. i am in tapering

weeks now. i have felt just awful, dizzy-headed, headache,

sleeplessness, depressed, extremely tired, and the med doesn't seem

to be doing anything for the swollen hands although shoulder is

better. could the prednisone cause so many side effects?

i can't work now and have no ins or money for med. care.>>

Hi Lane! Welcome to the group. I'm sorry you're feeling so crummy.

Prednisone makes my joints feel much better (at least the first few days),

but it makes me feel very moody and depressed. It also gives me terrible

headaches and makes it hard to sleep. Like I've seen others post, " It's the

drug we love to hate, and hate to love. "

There are others in the group who will be able to answer your SSDI

questions.

Have a good day,

Carol in FL

[ ] re: newbie with many questions

hi, lane here again.

dr prescribed predizone for this shoulder flare-up. i am in tapering

weeks now. i have felt just awful, dizzy-headed, headache,

sleeplessness, depressed, extremely tired, and the med doesn't seem

to be doing anything for the swollen hands although shoulder is

better. could the prednisone cause so many side effects?

i can't work now and have no ins or money for med. care.

i have other questions regarding ssi and ssdi. not sure i qualify for

anything. i haven't filed yet because i am trying to learn more about

all of it. but did receive statement from ss last year that i didn't

have enough credits to qualify for disability payments.

thank you all for any helpful info.

lane

[Guest guest]

i know that feeling with my sons benefits from his dad. since he is 18 he

gets it. but if i were to apply for food stamps or public aid. it would be

counted against me. it sure doesn't make sense. kathy in il

[Guest guest]

Hi Lane. This link gives information about Texas Medicaid system and

the eligibility requirements. Hope it helps.

http://www.dhs.state.tx.us/programs/Elderly/medicaid.html

It sounds like you are going through a really rough time. You may not have

worked enough to be eligible for SS disability, but you may qualify for SSI.

A Desktop Guide To SSI Eligibility Requirements

http://www.ssa.gov/pubs/11001.html

Hope this helps.

a

[ ] re: newbie with many questions

hi, lane here again.

dr prescribed predizone for this shoulder flare-up. i am in tapering

weeks now. i have felt just awful, dizzy-headed, headache,

sleeplessness, depressed, extremely tired, and the med doesn't seem

to be doing anything for the swollen hands although shoulder is

better. could the prednisone cause so many side effects?

i can't work now and have no ins or money for med. care.

i have other questions regarding ssi and ssdi. not sure i qualify for

anything. i haven't filed yet because i am trying to learn more about

all of it. but did receive statement from ss last year that i didn't

have enough credits to qualify for disability payments.

thank you all for any helpful info.

lane

[Guest guest]

hello everyone,

I know its been awhile since I have posted. There seems to be something going

on all the time. We had computer trouble for awhile and I got really sick. I

am doing much better now.

I would like to welcome all the new comers to the group. I feel you will

really enjoy the group. Everyone here is great. We all learn alot from each

other and never feel like we are alone.

Now i will introduce myself. I am . My 13 year old son has JRA with

related lung disease. He is one of my 5 sons. He was dx at age 4 with JRA and

6 with the lung disease. He has been through alot but is a strong boy and

very smart. He has been flaring really bad this past week and yesterday he

went to his plum. dr and we found out that his plum. function is decreasing.

We changed his inhaler to Advair to see if its asthma related. The fear is

that the lung disease that has been in remission for 6 yrs is now

progressing. We are trying not to worry but that is easier said then done.

The dr is concerned because grew an inch but his PFT decreased. Thats

not normal. He goes back in 6 weeks to see if the new med is helpling.

Well I have lots of housework to get to. I hope everyone has a good painfree

day.

Sending lots of love to each one of you.

and

[Guest guest]

, I'm so sorry to hear that is having so many problems right

now. I certainly hope that the pulmonary situation is asthma related, and

not lung disease. Coping with RA is difficult for me as an adult, and I can

't imagine how hard it is to cope with RA as a 13 year old. You and

are in my prayers!

Hugs,

Carol in FL

Re: [ ] re: newbie with many questions

hello everyone,

I know its been awhile since I have posted. There seems to be something

going

on all the time. We had computer trouble for awhile and I got really sick. I

am doing much better now.

I would like to welcome all the new comers to the group. I feel you will

really enjoy the group. Everyone here is great. We all learn alot from each

other and never feel like we are alone.

Now i will introduce myself. I am . My 13 year old son has JRA with

related lung disease. He is one of my 5 sons. He was dx at age 4 with JRA

and

6 with the lung disease. He has been through alot but is a strong boy and

very smart. He has been flaring really bad this past week and yesterday he

went to his plum. dr and we found out that his plum. function is decreasing.

We changed his inhaler to Advair to see if its asthma related. The fear is

that the lung disease that has been in remission for 6 yrs is now

progressing. We are trying not to worry but that is easier said then done.

The dr is concerned because grew an inch but his PFT decreased. Thats

not normal. He goes back in 6 weeks to see if the new med is helpling.

Well I have lots of housework to get to. I hope everyone has a good painfree

day.

Sending lots of love to each one of you.

and

[Guest guest]

I’ll keep you and in my thoughts and prayers, too, and hope his lung

function improves quickly! Keep up the strength!!

Elly

Re: [ ] re: newbie with many questions

hello everyone,

I know its been awhile since I have posted. There seems to be something

going

on all the time. We had computer trouble for awhile and I got really sick. I

am doing much better now.

I would like to welcome all the new comers to the group. I feel you will

really enjoy the group. Everyone here is great. We all learn alot from each

other and never feel like we are alone.

Now i will introduce myself. I am . My 13 year old son has JRA with

related lung disease. He is one of my 5 sons. He was dx at age 4 with JRA

and

6 with the lung disease. He has been through alot but is a strong boy and

very smart. He has been flaring really bad this past week and yesterday he

went to his plum. dr and we found out that his plum. function is decreasing.

We changed his inhaler to Advair to see if its asthma related. The fear is

that the lung disease that has been in remission for 6 yrs is now

progressing. We are trying not to worry but that is easier said then done.

The dr is concerned because grew an inch but his PFT decreased. Thats

not normal. He goes back in 6 weeks to see if the new med is helpling.

Well I have lots of housework to get to. I hope everyone has a good painfree

day.

Sending lots of love to each one of you.

and

[Guest guest]

Hi ,

I am Stacey. I am 35 years old, divorced with a 6 year old son. I have

rheumatoid arthritis. I am glad to hear that you are feeling better and

saddened to hear that your son is not. It really bothers me to hear of a

child who is suffering. My son is healthy now, but he did have exercise

induced asthma which he has (thankfully) grown out of. I know how scarey it

can be to watch your child having trouble breathing and they have " that look "

in their eyes. The only thing you want to do is to make it better. I

sincerely hope that his lung disease is not worse. I will be praying for

him.

Lots of Love

Stacey in PA

[Guest guest]

a,

hasn't been doing a whole lot for the last couple of weeks. He

complains of pain in his back between his shoulder blades. He has a dry

cough. He hasn't riden his new bike is about 2 weeks. told me last

week that he was worried about because he didn't think was

looking to well. has complained that it hurts when he breaths. He

hasn't had any asthma syptoms at all. At least not like he has had in the

past. has a peak meter to measure how much air he blows out. He use to

be a 350 to 400 right now he is lucky to get 250. He gets winded easily

recently. Dr. said that this PFT was the worst one has had since

becoming his pt.

Right now the only thing that I can do is make sure he uses the inhaler

everyday and watch him closely. I guess we all are on pins and needles right

now. I have made a decision though. That if feels he is up to doing

something, then I am going to let him. I don't want to hold him back in any

way. I am sorry to say that this scare makes me think of the what ifs. What

if the disease is progressing? Do I keep him home to protect him or do I let

him live his life to the fullest while he can? I have to let him live his

life and enjoy it. Many people may think I am crazy. I will do everything I

can to help and make him better but I also have to face that fact that

there may not be anything I can do. That is a hard fact to face. I have to

respect and what he wants to do.

I want to thank you all for your kind words and prayers. We think of everyone

even though we don't always post. Hope you have a great weekend and everyone

is feeling good.

and

[Guest guest]

,

Sorry you've been sick but glad you're feeling better. I wish was

feeling better too.

It's a scary thought that the lung problems could be returning. I normally

never would hope for

asthma to be acting up, but I'd rather hope for it to be his asthma than the JRA

lung disease.

is a very strong young man and he's a fighter. Growing an inch is great

news. Is he still

able to play sports? Does he feel like his lungs are not functioning right?

Hopefully the medication

change will bring his pft's back in the normal range.

hugs,

a

Re: [ ] re: newbie with many questions

hello everyone,

I know its been awhile since I have posted. There seems to be something going

on all the time. We had computer trouble for awhile and I got really sick. I

am doing much better now.

I would like to welcome all the new comers to the group. I feel you will

really enjoy the group. Everyone here is great. We all learn alot from each

other and never feel like we are alone.

Now i will introduce myself. I am . My 13 year old son has JRA with

related lung disease. He is one of my 5 sons. He was dx at age 4 with JRA and

6 with the lung disease. He has been through alot but is a strong boy and

very smart. He has been flaring really bad this past week and yesterday he

went to his plum. dr and we found out that his plum. function is decreasing.

We changed his inhaler to Advair to see if its asthma related. The fear is

that the lung disease that has been in remission for 6 yrs is now

progressing. We are trying not to worry but that is easier said then done.

The dr is concerned because grew an inch but his PFT decreased. Thats

not normal. He goes back in 6 weeks to see if the new med is helpling.

Well I have lots of housework to get to. I hope everyone has a good painfree

day.

Sending lots of love to each one of you.

and

[Guest guest]

,

He must really feel bad. I'm so sorry that he's suffering like this. It's not

fair.

I don't think you are crazy for thinking that should be able to make

decisions about his life and how he lives it. I also wouldn't think you were

crazy if you were overprotective. His pain is your pain. You only want what

is best for him. I know the kind of thoughts that are going through your head,

but try to have positive thoughts. This lung problem can be a temporary setback

that can go right back into remission if indeed it isn't asthma related.

I admire you . I think it is harder to watch your child suffer with RA

than it

is to have it yourself. You've been dealing with this for many years and your

instincts as a mother have brought you this far. Whatever you decide will be

in 's best interest. Have faith in your instincts and please talk it over

with

's doctor. Maybe the doctor will have an opinion that will help you decide

what is the best for .

hugs and prayers,

a

Re: [ ] re: newbie with many questions

a,

hasn't been doing a whole lot for the last couple of weeks. He

complains of pain in his back between his shoulder blades. He has a dry

cough. He hasn't riden his new bike is about 2 weeks. told me last

week that he was worried about because he didn't think was

looking to well. has complained that it hurts when he breaths. He

hasn't had any asthma syptoms at all. At least not like he has had in the

past. has a peak meter to measure how much air he blows out. He use to

be a 350 to 400 right now he is lucky to get 250. He gets winded easily

recently. Dr. said that this PFT was the worst one has had since

becoming his pt.

Right now the only thing that I can do is make sure he uses the inhaler

everyday and watch him closely. I guess we all are on pins and needles right

now. I have made a decision though. That if feels he is up to doing

something, then I am going to let him. I don't want to hold him back in any

way. I am sorry to say that this scare makes me think of the what ifs. What

if the disease is progressing? Do I keep him home to protect him or do I let

him live his life to the fullest while he can? I have to let him live his

life and enjoy it. Many people may think I am crazy. I will do everything I

can to help and make him better but I also have to face that fact that

there may not be anything I can do. That is a hard fact to face. I have to

respect and what he wants to do.

I want to thank you all for your kind words and prayers. We think of everyone

even though we don't always post. Hope you have a great weekend and everyone

is feeling good.

and

[Guest guest]

Thank you a,

I needed that pep talk. Since it's only me making decsions about 's

health, I feel like I am alone sometimes. My mom, ex husband, even my

boyfriend say what ever you think is best. They all tell me they don't know

how I do it. They don't make the decsions with me. They all wait for me to

tell them what is going to be done. and I talk about it first.

His GI dr wants to get on a new drug study that is coming out. He

thinks the med would be great for but he has to find out if

qualifies. He isn't sure if he is because of the other health issuses. He did

say that 's acid reflux could irritate his lung disease and/or asthma.

He has on Nexium for the time being. He also gave him some ensure

pudding. He would like to gain more weight. He is about 70 lbs now.

Thanks again,

shelly