Kim

[Guest guest]

Thanks for your support. Lucas and seem to have the same disorder.

One day they will name it as a syndrome. Lucas had no IgA for a couple of

years and then now has some. His IgG has been low but depends on the lab

parameters whether it is considered very low. His asthma has been the kicker

for us. He did not develop severe asthma until he was at the end of his 3rd

year. He is alllergic to Singulair but is on Flovent and Servent daily and

does very well without a cold or sinus problems but requires prednisone with

illness. He also does have alot of allergies with High IgE levels. His IgG

subclasses do show low 2 and 4 but not terribly low. His IgM levels were

about 125-150 prior to IVig but recently they were only 40. The significance

I do not know. I cannot seem to get an answer except that he has

dysgammaglobulinemia ( meaning per our immuno that lots of things are out of

wack) I keep hearing that he many outgrow this and I am hopeful but I would

not trade the quality of life that we are now living with the IVIg. It seems

invasive but our little guys personality has improved dramatically since he

is not always feeling rotten. I have been acutely reminded since he got sick

this week of how bad behaviorally he gets when he does not feel good and how

I feel about him when he is that way and especially what it does to our

family when he is the center of attention whether good or bad. For us the

IVIg has changed our lives. We have only had 5 episodes of illness this

year. Granted he does not get over things like other kids but they atleast do

not run into each other any more. He gets nice breaks of wellness inbetween .

Glad you all are out there. I cannot always write but always read the posts.

Usually late at night or early in the morning.

Barbie Lucas 5, (Selective antibody deficiency, chronic sinusitis, otitis,

sensory integration def. hypogamm and dysgammaglobulinemia. asthma)

[Guest guest]

Thanks for your support. Lucas and seem to have the same disorder.

One day they will name it as a syndrome. Lucas had no IgA for a couple of

years and then now has some. His IgG has been low but depends on the lab

parameters whether it is considered very low. His asthma has been the kicker

for us. He did not develop severe asthma until he was at the end of his 3rd

year. He is alllergic to Singulair but is on Flovent and Servent daily and

does very well without a cold or sinus problems but requires prednisone with

illness. He also does have alot of allergies with High IgE levels. His IgG

subclasses do show low 2 and 4 but not terribly low. His IgM levels were

about 125-150 prior to IVig but recently they were only 40. The significance

I do not know. I cannot seem to get an answer except that he has

dysgammaglobulinemia ( meaning per our immuno that lots of things are out of

wack) I keep hearing that he many outgrow this and I am hopeful but I would

not trade the quality of life that we are now living with the IVIg. It seems

invasive but our little guys personality has improved dramatically since he

is not always feeling rotten. I have been acutely reminded since he got sick

this week of how bad behaviorally he gets when he does not feel good and how

I feel about him when he is that way and especially what it does to our

family when he is the center of attention whether good or bad. For us the

IVIg has changed our lives. We have only had 5 episodes of illness this

year. Granted he does not get over things like other kids but they atleast do

not run into each other any more. He gets nice breaks of wellness inbetween .

Glad you all are out there. I cannot always write but always read the posts.

Usually late at night or early in the morning.

Barbie Lucas 5, (Selective antibody deficiency, chronic sinusitis, otitis,

sensory integration def. hypogamm and dysgammaglobulinemia. asthma)

[Guest guest]

Thanks for the concern. We just had a mediport placed Friday and his

neutrophils are not normal yet, but we can go grocery shopping on

" non-peak " times so long as we sanitize the cart. An occassional dinner

out (also non peak times) is now a possibility with the same cautions.

So I carry a spray bottle of 1/10 solution of bleach and disposible

towels. It doesn't sound like much fun, but it's more than we've been

able to do since May.

I've never heard of Neutrogen either. I'll check to see if it's

available. Our numbers are coming up, just very slowly and since we do

avoid public places, we aren't using antibiotics. We'll keep our

fingers crossed. I was also informed recently that his numbers may

NEVER fall in the normal range.

Kim, mom to Linz and Graham (Bruton's)

[Guest guest]

Dearest Kim,

What a horrible experience for you to have had to endure as a child. I

commend your bravery in telling us about this. We as parents need to listen

to our children and sit by their side.....always. Bless you for what you

have had to overcome.

Autumn (Mark Cd5-Cd19 PID and )

[Guest guest]

Kim,

I can relate to your pain so much. I too have such a problem getting out of

bed, but more at night time, especially after I lie down for a while. This is

when it is more difficult, and I just want to get up to use the bathroom and

cannot walk within a matter of quick minutes.... I find it amazing at how fast

my joints swell and ache. What a feeling, or no one hearing you when you are

asking for them Kim.......I too have had that happen. Once it was so bad, my

roommate called an ambulance. I was so sick....I couldn't move. I saw my

Rheumy today and I will be starting Planqunil on Thursday and I am taking Ultram

tonight. 2 x a day for a while. I am only getting about 4 hours a sleep a

night now because the pain is so bad and because, when I cannot sleep with the

pain so bad, an " a type " personality like myself, lets my mind run and I will

stress about work......I will constantly go over in my mind what I have to do

the next day, how to do it, what deliveries are coming in, how to set it

up.....etc., and I stress myself out, but I do this to keep my mind off the pain

and deprive myself of a good night sleep.........stupid huh, but I do it. I

told him that I cannot get to sleep, so we are trying the Ultram for a while.

Has anyone tried Ultram and how does it work for you? The Elavil did absolutely

nothing for me, nor the Ambien. I am working 6 days a week at this point,

because it is the busiest at our shopping center and I will have to continue to

do so until after Christmas, so it is really a very difficult time of the year

for me. Two years in a row, I have landed in the hospital at this exact time,

and I know that I should back off some, but cannot. We don't have enough help,

we are extremely busy and I don't know what to do. This time of the year, gets

me very nervous. The cold air totally disagrees with me and I find myself so

runned down from working so many long hours. Yesterday, I worked 12

straight....it's so difficult and I know that I am doing no good to myself, but

it is impossible to stop right now. The doctor really got mad at me today, but

I needed to convince him, that I have to right now, while I still feel like I

can. I really have no choice, even though it is my own business, but this is

our busiest time of the year........asking me to stop working or cutting way

back is like taking a drink away, cold turkey from an alcoholic. I have cut my

hours back to 9 hours a day instead of 10 or 11....I am really trying to

compromise, and honestly.......I am trying to be good to myself, but sometimes,

I wonder if it is really all worth it? I am so sick of it all.......so tired

and so tired of not being the woman that I was.........I just cannot swallow

this " horse pill " ......too much to the ego I think......I am still not coping

with it and choose to bury myself in my work I guess.........I don't know how to

handle this disease? How do I? It is something that I have consumed my life

with lately. It is constantly on my mind and when I drop things, break things

because my hands are so sore and I have lost a lot of my strength, I will

sometimes just stop and cry and get mad at myself. I get so damn frustrated.

I am so sorry......for rambling on Kim......I really wanted to see how you are

and hope that you are feeling better these past few days and it's wonderful to

hear from you. I just received the video last week....THANK YOU and I will be

sending out a check this week for it...........thank you, thank you again! This

was so kind of you to do this for the group. I am sharing it with my family so

they better understand. How are your injections going, so far it sounds like

it's okay. Be well Kim.

Love, Sue #2

[Guest guest]

Sue, sorry to add on to Tricia's good message, but I apparently deleted

Sue's original message to the group. I just wanted to say that Ultram is a

pain med that is one of those that either works for you or it doesn't. It

seems that has been the experience stated in this group for quite a while.

Also, Elavil is well known for its next day side effects. I know that

Ambien is used more often now than Elavil, but you really should explain all

of medication effects with your doctor. There are so many different

alternatives out there that you shouldn't have to live with just these.

Sometimes we have to be persistent and " push " our doctors until we find just

the right medication or " cocktail " of medication. This extends not just to

sleep, but to pain and depression meds also. Hang in there.

Sue, I just also wanted to say that I too (as many on this list) am a Type A

personality and you can and sometimes do push our bodies past what they

need. Please listen when your body says stop. I think it means it. I

understand and commend you for wanting to work in a situation where they

really need you, but keep in mind that this is not your fault. If you push

too hard, your body can fall apart on you.

Best to you, Kathi M

Re: Kim

>

>

> > Kim,

> >

> > I can relate to your pain so much. I too have such a problem getting

out

> of bed, but more at night time, especially after I lie down for a while.

> This is when it is more difficult, and I just want to get up to use the

> bathroom and cannot walk within a matter of quick minutes.... I find it

> amazing at how fast my joints swell and ache. What a feeling, or no one

> hearing you when you are asking for them Kim.......I too have had that

> happen. Once it was so bad, my roommate called an ambulance. I was so

> sick....I couldn't move. I saw my Rheumy today and I will be starting

> Planqunil on Thursday and I am taking Ultram tonight. 2 x a day for a

> while. I am only getting about 4 hours a sleep a night now because the

pain

> is so bad and because, when I cannot sleep with the pain so bad, an " a

type "

> personality like myself, lets my mind run and I will stress about

> work......I will constantly go over in my mind what I have to do the next

> day, how to do it, what deliveries are !

> > coming in, how to set it up.....etc., and I stress myself out, but I do

> this to keep my mind off the pain and deprive myself of a good night

> sleep.........stupid huh, but I do it. I told him that I cannot get to

> sleep, so we are trying the Ultram for a while. Has anyone tried Ultram

> and how does it work for you? The Elavil did absolutely nothing for me,

nor

> the Ambien. I am working 6 days a week at this point, because it is the

> busiest at our shopping center and I will have to continue to do so until

> after Christmas, so it is really a very difficult time of the year for me.

> Two years in a row, I have landed in the hospital at this exact time, and

I

> know that I should back off some, but cannot. We don't have enough help,

> we are extremely busy and I don't know what to do. This time of the

year,

> gets me very nervous. The cold air totally disagrees with me and I find

> myself so runned down from working so many long hours. Yesterday, I

worked

> 12 straight....it's so d!

> > ifficult and I know that I am doing no good to myself, but it is

> impossible to stop right now. The doctor really got mad at me today, but

I

> needed to convince him, that I have to right now, while I still feel like

I

> can. I really have no choice, even though it is my own business, but

this

> is our busiest time of the year........asking me to stop working or

cutting

> way back is like taking a drink away, cold turkey from an alcoholic. I

have

> cut my hours back to 9 hours a day instead of 10 or 11....I am really

trying

> to compromise, and honestly.......I am trying to be good to myself, but

> sometimes, I wonder if it is really all worth it? I am so sick of it

> all.......so tired and so tired of not being the woman that I

was.........I

> just cannot swallow this " horse pill " ......too much to the ego I

> think......I am still not coping with it and choose to bury myself in my

> work I guess.........I don't know how to handle this disease? How do I?

It

> is something that I have consumed !

> > my life with lately. It is constantly on my mind and when I drop

things,

> break things because my hands are so sore and I have lost a lot of my

> strength, I will sometimes just stop and cry and get mad at myself. I get

> so damn frustrated. I am so sorry......for rambling on Kim......I really

> wanted to see how you are and hope that you are feeling better these past

> few days and it's wonderful to hear from you. I just received the video

> last week....THANK YOU and I will be sending out a check this week for

> it...........thank you, thank you again! This was so kind of you to do

this

> for the group. I am sharing it with my family so they better understand.

> How are your injections going, so far it sounds like it's okay. Be well

> Kim.

> > Love, Sue #2

> >

> >

> >

[Guest guest]

Sue #2,

Thank you for all your support. I began this email this morning and have been

trying to get a minute to finish it ever since. Tonight is MTX injection night

so I try to do all my chores and such the day of and that way I can take a day

or two easy. This is all taking some getting used too. I too long to be the

women I once was...I hear what you're saying friend! This disease occupies far

too many of my thoughts....but I don't know how to stop it. I just want this

damn disease to go into remission. I am tired of fighting with it. The

injections make me really tired and weak, but I can tell my body is settling

down. I have dropped out of school....3 classes away from my degree....I can't

work b/c I would certainly get fired in a matter of weeks for

undependability....my husband is completely and totally exhausted from working a

job in addition to his career. He works almost 80 hours a week. I have...and

my family has....finally accepted that I have this awful disease and I am

putting every second of every day into getting well...as much as I can. I'm not

working....I don't care if I end up having to file bankrupsy (sp). I'm not

taking any classes that may stress me out....I'm not taking any trips that will

be too taxing etc... I have committed the next two years to wellness...then, I

may need to make another committment but that's about all I can bare to think to

take on right now. I feel like I have had to give up sooo much. I am tired!

I am frustrated but I have to keep going. Sue, please slow down. My husband

says I can't get a job because I'm the world biggest over achiever and I would

end up putting my whole self into it....I can't do things half way. Like you, I

always give 200%.

I'll say again that the best thing I ever did for myself was to go see Dr. Cush

who somehow knew what to say and what to treat me with in order for me to get ok

with this all. I was in denial for a long time....and it's like grief and you

go back and forth between stages.

I also think I have this Antiphospholipid Antibody Syndrom....I have had three

pregnancies resulting in birth and several miscarriages...but they were early

on. The pregnancies were all high risk because of pre-eclampsia and eclaimpsia

in one. I also had one baby that was born with a congenital heart defect and

ended up passing away. I can't go there right now...it's too painful. Anyway,

life is really hard right now, but I have a lot to be gratful for and for

one...it's this group and people like you!!!!!

Thank you for thinking of me. I wish I could help you more. My best advise

would be to SLOW DOWN....finding the right drug combo is key (Dr. Cush is

excellent with that). It's almost like he can look at you and see your body

chemistry. It's really bizarre...he told me more about myself than I told him.

This disease is difficult to adjust too....keep talking it out....we'll keep

listening and I'll do the same. This first year is kicking me a**.

Oh, Ultram did absolutly NOTHING for me. I couldn't even tell I took anything,

but everyone's different. It may work wonders for you.

Take care my friend....Lots of love and hugs...and prayer and great karma and

being sent your way.

Love, Kim

" A. Matera " wrote: Kim,

I can relate to your pain so much. I too have such a problem getting out of

bed, but more at night time, especially after I lie down for a while. This is

when it is more difficult, and I just want to get up to use the bathroom and

cannot walk within a matter of quick minutes.... I find it amazing at how fast

my joints swell and ache. What a feeling, or no one hearing you when you are

asking for them Kim.......I too have had that happen. Once it was so bad, my

roommate called an ambulance. I was so sick....I couldn't move. I saw my

Rheumy today and I will be starting Planqunil on Thursday and I am taking Ultram

tonight. 2 x a day for a while. I am only getting about 4 hours a sleep a

night now because the pain is so bad and because, when I cannot sleep with the

pain so bad, an " a type " personality like myself, lets my mind run and I will

stress about work......I will constantly go over in my mind what I have to do

the next day, how to do it, what deliveries are coming in, how to set it

up.....etc., and I stress myself out, but I do this to keep my mind off the pain

and deprive myself of a good night sleep.........stupid huh, but I do it. I

told him that I cannot get to sleep, so we are trying the Ultram for a while.

Has anyone tried Ultram and how does it work for you? The Elavil did absolutely

nothing for me, nor the Ambien. I am working 6 days a week at this point,

because it is the busiest at our shopping center and I will have to continue to

do so until after Christmas, so it is really a very difficult time of the year

for me. Two years in a row, I have landed in the hospital at this exact time,

and I know that I should back off some, but cannot. We don't have enough help,

we are extremely busy and I don't know what to do. This time of the year, gets

me very nervous. The cold air totally disagrees with me and I find myself so

runned down from working so many long hours. Yesterday, I worked 12

straight....it's so difficult and I know that I am doing no good to myself, but

it is impossible to stop right now. The doctor really got mad at me today, but

I needed to convince him, that I have to right now, while I still feel like I

can. I really have no choice, even though it is my own business, but this is

our busiest time of the year........asking me to stop working or cutting way

back is like taking a drink away, cold turkey from an alcoholic. I have cut my

hours back to 9 hours a day instead of 10 or 11....I am really trying to

compromise, and honestly.......I am trying to be good to myself, but sometimes,

I wonder if it is really all worth it? I am so sick of it all.......so tired

and so tired of not being the woman that I was.........I just cannot swallow

this " horse pill " ......too much to the ego I think......I am still not coping

with it and choose to bury myself in my work I guess.........I don't know how to

handle this disease? How do I? It is something that I have consumed my life

with lately. It is constantly on my mind and when I drop things, break things

because my hands are so sore and I have lost a lot of my strength, I will

sometimes just stop and cry and get mad at myself. I get so damn frustrated.

I am so sorry......for rambling on Kim......I really wanted to see how you are

and hope that you are feeling better these past few days and it's wonderful to

hear from you. I just received the video last week....THANK YOU and I will be

sending out a check this week for it...........thank you, thank you again! This

was so kind of you to do this for the group. I am sharing it with my family so

they better understand. How are your injections going, so far it sounds like

it's okay. Be well Kim.

Love, Sue #2

[Guest guest]

Sue #2,

Thank you for all your support. I began this email this morning and have been

trying to get a minute to finish it ever since. Tonight is MTX injection night

so I try to do all my chores and such the day of and that way I can take a day

or two easy. This is all taking some getting used too. I too long to be the

women I once was...I hear what you're saying friend! This disease occupies far

too many of my thoughts....but I don't know how to stop it. I just want this

damn disease to go into remission. I am tired of fighting with it. The

injections make me really tired and weak, but I can tell my body is settling

down. I have dropped out of school....3 classes away from my degree....I can't

work b/c I would certainly get fired in a matter of weeks for

undependability....my husband is completely and totally exhausted from working a

job in addition to his career. He works almost 80 hours a week. I have...and

my family has....finally accepted that I have this awful disease and I am

putting every second of every day into getting well...as much as I can. I'm not

working....I don't care if I end up having to file bankrupsy (sp). I'm not

taking any classes that may stress me out....I'm not taking any trips that will

be too taxing etc... I have committed the next two years to wellness...then, I

may need to make another committment but that's about all I can bare to think to

take on right now. I feel like I have had to give up sooo much. I am tired!

I am frustrated but I have to keep going. Sue, please slow down. My husband

says I can't get a job because I'm the world biggest over achiever and I would

end up putting my whole self into it....I can't do things half way. Like you, I

always give 200%.

I'll say again that the best thing I ever did for myself was to go see Dr. Cush

who somehow knew what to say and what to treat me with in order for me to get ok

with this all. I was in denial for a long time....and it's like grief and you

go back and forth between stages.

I also think I have this Antiphospholipid Antibody Syndrom....I have had three

pregnancies resulting in birth and several miscarriages...but they were early

on. The pregnancies were all high risk because of pre-eclampsia and eclaimpsia

in one. I also had one baby that was born with a congenital heart defect and

ended up passing away. I can't go there right now...it's too painful. Anyway,

life is really hard right now, but I have a lot to be gratful for and for

one...it's this group and people like you!!!!!

Thank you for thinking of me. I wish I could help you more. My best advise

would be to SLOW DOWN....finding the right drug combo is key (Dr. Cush is

excellent with that). It's almost like he can look at you and see your body

chemistry. It's really bizarre...he told me more about myself than I told him.

This disease is difficult to adjust too....keep talking it out....we'll keep

listening and I'll do the same. This first year is kicking me a**.

Oh, Ultram did absolutly NOTHING for me. I couldn't even tell I took anything,

but everyone's different. It may work wonders for you.

Take care my friend....Lots of love and hugs...and prayer and great karma and

being sent your way.

Love, Kim

" A. Matera " wrote: Kim,

I can relate to your pain so much. I too have such a problem getting out of

bed, but more at night time, especially after I lie down for a while. This is

when it is more difficult, and I just want to get up to use the bathroom and

cannot walk within a matter of quick minutes.... I find it amazing at how fast

my joints swell and ache. What a feeling, or no one hearing you when you are

asking for them Kim.......I too have had that happen. Once it was so bad, my

roommate called an ambulance. I was so sick....I couldn't move. I saw my

Rheumy today and I will be starting Planqunil on Thursday and I am taking Ultram

tonight. 2 x a day for a while. I am only getting about 4 hours a sleep a

night now because the pain is so bad and because, when I cannot sleep with the

pain so bad, an " a type " personality like myself, lets my mind run and I will

stress about work......I will constantly go over in my mind what I have to do

the next day, how to do it, what deliveries are coming in, how to set it

up.....etc., and I stress myself out, but I do this to keep my mind off the pain

and deprive myself of a good night sleep.........stupid huh, but I do it. I

told him that I cannot get to sleep, so we are trying the Ultram for a while.

Has anyone tried Ultram and how does it work for you? The Elavil did absolutely

nothing for me, nor the Ambien. I am working 6 days a week at this point,

because it is the busiest at our shopping center and I will have to continue to

do so until after Christmas, so it is really a very difficult time of the year

for me. Two years in a row, I have landed in the hospital at this exact time,

and I know that I should back off some, but cannot. We don't have enough help,

we are extremely busy and I don't know what to do. This time of the year, gets

me very nervous. The cold air totally disagrees with me and I find myself so

runned down from working so many long hours. Yesterday, I worked 12

straight....it's so difficult and I know that I am doing no good to myself, but

it is impossible to stop right now. The doctor really got mad at me today, but

I needed to convince him, that I have to right now, while I still feel like I

can. I really have no choice, even though it is my own business, but this is

our busiest time of the year........asking me to stop working or cutting way

back is like taking a drink away, cold turkey from an alcoholic. I have cut my

hours back to 9 hours a day instead of 10 or 11....I am really trying to

compromise, and honestly.......I am trying to be good to myself, but sometimes,

I wonder if it is really all worth it? I am so sick of it all.......so tired

and so tired of not being the woman that I was.........I just cannot swallow

this " horse pill " ......too much to the ego I think......I am still not coping

with it and choose to bury myself in my work I guess.........I don't know how to

handle this disease? How do I? It is something that I have consumed my life

with lately. It is constantly on my mind and when I drop things, break things

because my hands are so sore and I have lost a lot of my strength, I will

sometimes just stop and cry and get mad at myself. I get so damn frustrated.

I am so sorry......for rambling on Kim......I really wanted to see how you are

and hope that you are feeling better these past few days and it's wonderful to

hear from you. I just received the video last week....THANK YOU and I will be

sending out a check this week for it...........thank you, thank you again! This

was so kind of you to do this for the group. I am sharing it with my family so

they better understand. How are your injections going, so far it sounds like

it's okay. Be well Kim.

Love, Sue #2

[Guest guest]

Kim since you mentioned having a child born with cogential heart defect

you may ask your doc to test you for Anti-SSa and Anti-SSb, also called

Anti-Ro antibodies, these are antibodies often found in lupus patients,

but also with other autoimmune diseases, anyway they cause a condition

in the fetus called congential heart block. They are similar to the

anticardiolipin antibodies that cause recurrent miscarriage.

Most people with Sjorgens have Anti-Ro antibodies. And I would have the

anticardiolipin antibodies tested also. Like I said, just for peace of

mind. And if you carry them you can head off future problems with

clotting problems if you have surgery etc.

In fact you may have already been tested for both these in the beginning

of your disease, most of these are non specific, as they dont give a

diagnosis, and doctors dont always tell you what antibodies you have

tested positive for.

[Guest guest]

Hi Kim,

yes, I hate those bumps too. They look horrible and sometimes are very painful,

especially the big ones for me. Finally the one on my chin started going down

yesterday some. I was in New York yesterday and surrounded by beautiful, tall,

model woman...I mean it. It's a city where you see beautiful woman all over the

place, and my face made me feel so horrible. When I get those bumps I am very

self-conscience. I just cannot help it, but at least it doesn't hang around all

the time. Sometimes I am glad that I have long hair, because I can put it in

front of my shoulders.....hides my face...sounds stupid yes....but it makes me

feel better....Hang in there Kim, I am facing the same feelings as you too...I

recently just started accepting my prednisone body...it's hard to deal with, but

I am not putting myself down anymore. I know and I hope that it's not

permanent, but I feel that I am fine with whom I are right now. I would rather

have no flares and feel good. Love you sweetie.

Love, Sue #2