My story

[Guest guest]

Please don't blame this on yourself. I'm sure that there were other

contributing factors to the flatness, not simply your breastfeeding

hold. The upside is that you have caught this early so you should

see correction from your repositioning efforts. Check out our FILES

section, Repositioning Headquarters, for some other ideas. Please

keep us posted!

Natasha

Atlanta, GA

> Hello! I am new here. I have a son, with positional

plagio. I

> keep beating myself up b/c I think I did it to him. When he was

born

> 2 months ago (4 minutes of pushing, so an easy birth) he had a cute

> little round head. I could not get him to nurse on my right

breast,

> so the lactation consultant told me to try the football hold. It

was

> pretty uncomfortable for me, but I supported by the back of

his

> head. I think with all the nipple pain(that a lot of us have in

the

> early days of nursing) I might have been clenching my hand around

his

> head while he was nursing. At my 2 week appointment the doc

noticed

> " significant flattening " and asked about the birth. I told her it

was

> pretty uneventful. Later when I got home and went to feed him, I

> realized that the malformation of his head fir perfectly into my

hand

> when I nursed him. I immediately called the Lactation consultant

and

> told her that her instruction had caused my son to have a deformed

> head!! SHe told me, NO, you need to support him at his neck - at

the

> base of his head....a little too late, unfortunately. For the

past 6

> weeks, we have been doing repo and the two stretches. I went to

> Cranial tech and have a follow up there this week. I also went

for my

> 2 month last week. 's head has definitely improved, but

there

> is still a decent sized flat spot and his ear misalignment is

pretty

> bad. I am pretty confident that the head would round itself out on

> it's own, but I am more concerned about the ear/facial assymetry.

I

> think we will give C.Tech the go ahead to get things rolling this

week

> if they thing a helmet would help. He is so young, I am hoping we

> have quick results. I look forward to learning more from all of

you.

[Guest guest]

Hi!,

Welcome to the group!

I just replied with some repo information to your other thread about

younger babies being banded.

I mentioned this in that thread, but we have another baby here that

was repositioned starting at 7 weeks, and received remarkable

correction very quickly. Perhaps you will find this encouraging

since your is the same age! Meggi's progress pics are in the

Photos/Before and After/Repositioned/Meggi folder.

I am surprised still has significant flattening and ear

misalignment when you started repo'ing so young! Repo just doesn't

work in all cases, though, and I think it is wise you are going for

a consult at CT. Is spending any time at all on his

flattened area during the day or night? Are you trying to keep him

off of his head entirely, or placing him on his bulging side at

every opportunity? I'd love to help with specific suggestions for

repo'ing ; can you give me a snapshot of what techniques you

are using to repo your son?

Take care,

Christie (Mom to Repo'd Remy)

> Hello! I am new here. I have a son, with positional

plagio. I

> keep beating myself up b/c I think I did it to him. When he was

born

> 2 months ago (4 minutes of pushing, so an easy birth) he had a cute

> little round head. I could not get him to nurse on my right

breast,

> so the lactation consultant told me to try the football hold. It

was

> pretty uncomfortable for me, but I supported by the back of

his

> head. I think with all the nipple pain(that a lot of us have in

the

> early days of nursing) I might have been clenching my hand around

his

> head while he was nursing. At my 2 week appointment the doc

noticed

> " significant flattening " and asked about the birth. I told her it

was

> pretty uneventful. Later when I got home and went to feed him, I

> realized that the malformation of his head fir perfectly into my

hand

> when I nursed him. I immediately called the Lactation consultant

and

> told her that her instruction had caused my son to have a deformed

> head!! SHe told me, NO, you need to support him at his neck - at

the

> base of his head....a little too late, unfortunately. For the

past 6

> weeks, we have been doing repo and the two stretches. I went to

> Cranial tech and have a follow up there this week. I also went

for my

> 2 month last week. 's head has definitely improved, but

there

> is still a decent sized flat spot and his ear misalignment is

pretty

> bad. I am pretty confident that the head would round itself out on

> it's own, but I am more concerned about the ear/facial assymetry.

I

> think we will give C.Tech the go ahead to get things rolling this

week

> if they thing a helmet would help. He is so young, I am hoping we

> have quick results. I look forward to learning more from all of

you.

[Guest guest]

Hi!,

Welcome to the group!

I just replied with some repo information to your other thread about

younger babies being banded.

I mentioned this in that thread, but we have another baby here that

was repositioned starting at 7 weeks, and received remarkable

correction very quickly. Perhaps you will find this encouraging

since your is the same age! Meggi's progress pics are in the

Photos/Before and After/Repositioned/Meggi folder.

I am surprised still has significant flattening and ear

misalignment when you started repo'ing so young! Repo just doesn't

work in all cases, though, and I think it is wise you are going for

a consult at CT. Is spending any time at all on his

flattened area during the day or night? Are you trying to keep him

off of his head entirely, or placing him on his bulging side at

every opportunity? I'd love to help with specific suggestions for

repo'ing ; can you give me a snapshot of what techniques you

are using to repo your son?

Take care,

Christie (Mom to Repo'd Remy)

> Hello! I am new here. I have a son, with positional

plagio. I

> keep beating myself up b/c I think I did it to him. When he was

born

> 2 months ago (4 minutes of pushing, so an easy birth) he had a cute

> little round head. I could not get him to nurse on my right

breast,

> so the lactation consultant told me to try the football hold. It

was

> pretty uncomfortable for me, but I supported by the back of

his

> head. I think with all the nipple pain(that a lot of us have in

the

> early days of nursing) I might have been clenching my hand around

his

> head while he was nursing. At my 2 week appointment the doc

noticed

> " significant flattening " and asked about the birth. I told her it

was

> pretty uneventful. Later when I got home and went to feed him, I

> realized that the malformation of his head fir perfectly into my

hand

> when I nursed him. I immediately called the Lactation consultant

and

> told her that her instruction had caused my son to have a deformed

> head!! SHe told me, NO, you need to support him at his neck - at

the

> base of his head....a little too late, unfortunately. For the

past 6

> weeks, we have been doing repo and the two stretches. I went to

> Cranial tech and have a follow up there this week. I also went

for my

> 2 month last week. 's head has definitely improved, but

there

> is still a decent sized flat spot and his ear misalignment is

pretty

> bad. I am pretty confident that the head would round itself out on

> it's own, but I am more concerned about the ear/facial assymetry.

I

> think we will give C.Tech the go ahead to get things rolling this

week

> if they thing a helmet would help. He is so young, I am hoping we

> have quick results. I look forward to learning more from all of

you.

[Guest guest]

Hi,

Welcome to the group! I just want to second everything you've already

been told and to tell you THIS ISN'T YOUR FAULT!! :-)

Keep us posted on your little one.

> Hello! I am new here. I have a son, with positional

plagio. I

> keep beating myself up b/c I think I did it to him. When he was

born

> 2 months ago (4 minutes of pushing, so an easy birth) he had a cute

> little round head. I could not get him to nurse on my right breast,

> so the lactation consultant told me to try the football hold. It

was

> pretty uncomfortable for me, but I supported by the back of

his

> head. I think with all the nipple pain(that a lot of us have in the

> early days of nursing) I might have been clenching my hand around

his

> head while he was nursing. At my 2 week appointment the doc noticed

> " significant flattening " and asked about the birth. I told her it

was

> pretty uneventful. Later when I got home and went to feed him, I

> realized that the malformation of his head fir perfectly into my

hand

> when I nursed him. I immediately called the Lactation consultant

and

> told her that her instruction had caused my son to have a deformed

> head!! SHe told me, NO, you need to support him at his neck - at the

> base of his head....a little too late, unfortunately. For the past

6

> weeks, we have been doing repo and the two stretches. I went to

> Cranial tech and have a follow up there this week. I also went for

my

> 2 month last week. 's head has definitely improved, but there

> is still a decent sized flat spot and his ear misalignment is pretty

> bad. I am pretty confident that the head would round itself out on

> it's own, but I am more concerned about the ear/facial assymetry. I

> think we will give C.Tech the go ahead to get things rolling this

week

> if they thing a helmet would help. He is so young, I am hoping we

> have quick results. I look forward to learning more from all of

you.

[Guest guest]

Hi,

Welcome to the group! I just want to second everything you've already

been told and to tell you THIS ISN'T YOUR FAULT!! :-)

Keep us posted on your little one.

> Hello! I am new here. I have a son, with positional

plagio. I

> keep beating myself up b/c I think I did it to him. When he was

born

> 2 months ago (4 minutes of pushing, so an easy birth) he had a cute

> little round head. I could not get him to nurse on my right breast,

> so the lactation consultant told me to try the football hold. It

was

> pretty uncomfortable for me, but I supported by the back of

his

> head. I think with all the nipple pain(that a lot of us have in the

> early days of nursing) I might have been clenching my hand around

his

> head while he was nursing. At my 2 week appointment the doc noticed

> " significant flattening " and asked about the birth. I told her it

was

> pretty uneventful. Later when I got home and went to feed him, I

> realized that the malformation of his head fir perfectly into my

hand

> when I nursed him. I immediately called the Lactation consultant

and

> told her that her instruction had caused my son to have a deformed

> head!! SHe told me, NO, you need to support him at his neck - at the

> base of his head....a little too late, unfortunately. For the past

6

> weeks, we have been doing repo and the two stretches. I went to

> Cranial tech and have a follow up there this week. I also went for

my

> 2 month last week. 's head has definitely improved, but there

> is still a decent sized flat spot and his ear misalignment is pretty

> bad. I am pretty confident that the head would round itself out on

> it's own, but I am more concerned about the ear/facial assymetry. I

> think we will give C.Tech the go ahead to get things rolling this

week

> if they thing a helmet would help. He is so young, I am hoping we

> have quick results. I look forward to learning more from all of

you.

[Guest guest]

Hi and welcome to the group! I am sure that a helmet would help him

but aggressive repo may also. We will support you with whatever you

decide to do and are here for you every step of the way. You are so

wise to have caught this now and are taking measures to fix it. He

will be fine!

Sue

Colin F., 19 mos.

STAR grad

brachy

Buffalo, NY

> Hello! I am new here. I have a son, with positional

plagio. I

> keep beating myself up b/c I think I did it to him. When he was

born

> 2 months ago (4 minutes of pushing, so an easy birth) he had a cute

> little round head. I could not get him to nurse on my right breast,

> so the lactation consultant told me to try the football hold. It

was

> pretty uncomfortable for me, but I supported by the back of

his

> head. I think with all the nipple pain(that a lot of us have in the

> early days of nursing) I might have been clenching my hand around

his

> head while he was nursing. At my 2 week appointment the doc noticed

> " significant flattening " and asked about the birth. I told her it

was

> pretty uneventful. Later when I got home and went to feed him, I

> realized that the malformation of his head fir perfectly into my

hand

> when I nursed him. I immediately called the Lactation consultant

and

> told her that her instruction had caused my son to have a deformed

> head!! SHe told me, NO, you need to support him at his neck - at the

> base of his head....a little too late, unfortunately. For the past

6

> weeks, we have been doing repo and the two stretches. I went to

> Cranial tech and have a follow up there this week. I also went for

my

> 2 month last week. 's head has definitely improved, but there

> is still a decent sized flat spot and his ear misalignment is pretty

> bad. I am pretty confident that the head would round itself out on

> it's own, but I am more concerned about the ear/facial assymetry. I

> think we will give C.Tech the go ahead to get things rolling this

week

> if they thing a helmet would help. He is so young, I am hoping we

> have quick results. I look forward to learning more from all of

you.

[Guest guest]

Hi and welcome to the group! I am sure that a helmet would help him

but aggressive repo may also. We will support you with whatever you

decide to do and are here for you every step of the way. You are so

wise to have caught this now and are taking measures to fix it. He

will be fine!

Sue

Colin F., 19 mos.

STAR grad

brachy

Buffalo, NY

> Hello! I am new here. I have a son, with positional

plagio. I

> keep beating myself up b/c I think I did it to him. When he was

born

> 2 months ago (4 minutes of pushing, so an easy birth) he had a cute

> little round head. I could not get him to nurse on my right breast,

> so the lactation consultant told me to try the football hold. It

was

> pretty uncomfortable for me, but I supported by the back of

his

> head. I think with all the nipple pain(that a lot of us have in the

> early days of nursing) I might have been clenching my hand around

his

> head while he was nursing. At my 2 week appointment the doc noticed

> " significant flattening " and asked about the birth. I told her it

was

> pretty uneventful. Later when I got home and went to feed him, I

> realized that the malformation of his head fir perfectly into my

hand

> when I nursed him. I immediately called the Lactation consultant

and

> told her that her instruction had caused my son to have a deformed

> head!! SHe told me, NO, you need to support him at his neck - at the

> base of his head....a little too late, unfortunately. For the past

6

> weeks, we have been doing repo and the two stretches. I went to

> Cranial tech and have a follow up there this week. I also went for

my

> 2 month last week. 's head has definitely improved, but there

> is still a decent sized flat spot and his ear misalignment is pretty

> bad. I am pretty confident that the head would round itself out on

> it's own, but I am more concerned about the ear/facial assymetry. I

> think we will give C.Tech the go ahead to get things rolling this

week

> if they thing a helmet would help. He is so young, I am hoping we

> have quick results. I look forward to learning more from all of

you.

[Guest guest]

I am going to CT in NJ. It is about 70 miles from my home. I have

been repo'ing him during the day and night. When I nurse, I try to

keep all pressure off the flat spot and I am breaking the SIDS rule

and letting him sleep on his tummy some. Usually naps are on his

belly and some nights I do it too. He does have a strong neck, so

that makes me feel a little better about it. It will be interesting

to see what CT says on Thursday. In a way, I would like to wait until

3 months, but I also want FAST results and from all I hear, the

earlier the better. I guess it will take a few weeks to get insurance

stuff taken care of, so maybe by the time that it all resolved he will

be 3 months.

> Hello! I am new here. I have a son, with positional plagio. I

> keep beating myself up b/c I think I did it to him. When he was born

> 2 months ago (4 minutes of pushing, so an easy birth) he had a cute

> little round head. I could not get him to nurse on my right breast,

> so the lactation consultant told me to try the football hold. It was

> pretty uncomfortable for me, but I supported by the back of his

> head. I think with all the nipple pain(that a lot of us have in the

> early days of nursing) I might have been clenching my hand around his

> head while he was nursing. At my 2 week appointment the doc noticed

> " significant flattening " and asked about the birth. I told her it was

> pretty uneventful. Later when I got home and went to feed him, I

> realized that the malformation of his head fir perfectly into my hand

> when I nursed him. I immediately called the Lactation consultant and

> told her that her instruction had caused my son to have a deformed

> head!! SHe told me, NO, you need to support him at his neck - at the

> base of his head....a little too late, unfortunately. For the past 6

> weeks, we have been doing repo and the two stretches. I went to

> Cranial tech and have a follow up there this week. I also went for my

> 2 month last week. 's head has definitely improved, but there

> is still a decent sized flat spot and his ear misalignment is pretty

> bad. I am pretty confident that the head would round itself out on

> it's own, but I am more concerned about the ear/facial assymetry. I

> think we will give C.Tech the go ahead to get things rolling this week

> if they thing a helmet would help. He is so young, I am hoping we

> have quick results. I look forward to learning more from all of you.

>

>

>

>

> For more plagio info

[Guest guest]

I am going to CT in NJ. It is about 70 miles from my home. I have

been repo'ing him during the day and night. When I nurse, I try to

keep all pressure off the flat spot and I am breaking the SIDS rule

and letting him sleep on his tummy some. Usually naps are on his

belly and some nights I do it too. He does have a strong neck, so

that makes me feel a little better about it. It will be interesting

to see what CT says on Thursday. In a way, I would like to wait until

3 months, but I also want FAST results and from all I hear, the

earlier the better. I guess it will take a few weeks to get insurance

stuff taken care of, so maybe by the time that it all resolved he will

be 3 months.

> Hello! I am new here. I have a son, with positional plagio. I

> keep beating myself up b/c I think I did it to him. When he was born

> 2 months ago (4 minutes of pushing, so an easy birth) he had a cute

> little round head. I could not get him to nurse on my right breast,

> so the lactation consultant told me to try the football hold. It was

> pretty uncomfortable for me, but I supported by the back of his

> head. I think with all the nipple pain(that a lot of us have in the

> early days of nursing) I might have been clenching my hand around his

> head while he was nursing. At my 2 week appointment the doc noticed

> " significant flattening " and asked about the birth. I told her it was

> pretty uneventful. Later when I got home and went to feed him, I

> realized that the malformation of his head fir perfectly into my hand

> when I nursed him. I immediately called the Lactation consultant and

> told her that her instruction had caused my son to have a deformed

> head!! SHe told me, NO, you need to support him at his neck - at the

> base of his head....a little too late, unfortunately. For the past 6

> weeks, we have been doing repo and the two stretches. I went to

> Cranial tech and have a follow up there this week. I also went for my

> 2 month last week. 's head has definitely improved, but there

> is still a decent sized flat spot and his ear misalignment is pretty

> bad. I am pretty confident that the head would round itself out on

> it's own, but I am more concerned about the ear/facial assymetry. I

> think we will give C.Tech the go ahead to get things rolling this week

> if they thing a helmet would help. He is so young, I am hoping we

> have quick results. I look forward to learning more from all of you.

>

>

>

>

> For more plagio info

[Guest guest]

Well, I do have him the swing and carseat sometimes, but I am trying

to limit both to small amounts of time. We are trying more tummy

time. When he is in his swing, I try to put the force on the

bump...that seems to really be helping in the past 6 weeks. When I

put him on his back in the crib (though lately I have been putting him

on his tummy more) I try to position him on the bump and off the

flattened area. The repo has definitely helped. One pedi in my group

said, " Oh, I wouldn't even worry about it right now since the Repo'ing

seems to be helping " ,but my regular pedi still thinks it will cause

all sorts of long term problems with glasses and whatnot if his ears

are misaligned.

> > Hello! I am new here. I have a son, with positional

> plagio. I

> > keep beating myself up b/c I think I did it to him. When he was

> born

> > 2 months ago (4 minutes of pushing, so an easy birth) he had a cute

> > little round head. I could not get him to nurse on my right

> breast,

> > so the lactation consultant told me to try the football hold. It

> was

> > pretty uncomfortable for me, but I supported by the back of

> his

> > head. I think with all the nipple pain(that a lot of us have in

> the

> > early days of nursing) I might have been clenching my hand around

> his

> > head while he was nursing. At my 2 week appointment the doc

> noticed

> > " significant flattening " and asked about the birth. I told her it

> was

> > pretty uneventful. Later when I got home and went to feed him, I

> > realized that the malformation of his head fir perfectly into my

> hand

> > when I nursed him. I immediately called the Lactation consultant

> and

> > told her that her instruction had caused my son to have a deformed

> > head!! SHe told me, NO, you need to support him at his neck - at

> the

> > base of his head....a little too late, unfortunately. For the

> past 6

> > weeks, we have been doing repo and the two stretches. I went to

> > Cranial tech and have a follow up there this week. I also went

> for my

> > 2 month last week. 's head has definitely improved, but

> there

> > is still a decent sized flat spot and his ear misalignment is

> pretty

> > bad. I am pretty confident that the head would round itself out on

> > it's own, but I am more concerned about the ear/facial assymetry.

> I

> > think we will give C.Tech the go ahead to get things rolling this

> week

> > if they thing a helmet would help. He is so young, I am hoping we

> > have quick results. I look forward to learning more from all of

> you.

[Guest guest]

Well, I do have him the swing and carseat sometimes, but I am trying

to limit both to small amounts of time. We are trying more tummy

time. When he is in his swing, I try to put the force on the

bump...that seems to really be helping in the past 6 weeks. When I

put him on his back in the crib (though lately I have been putting him

on his tummy more) I try to position him on the bump and off the

flattened area. The repo has definitely helped. One pedi in my group

said, " Oh, I wouldn't even worry about it right now since the Repo'ing

seems to be helping " ,but my regular pedi still thinks it will cause

all sorts of long term problems with glasses and whatnot if his ears

are misaligned.

> > Hello! I am new here. I have a son, with positional

> plagio. I

> > keep beating myself up b/c I think I did it to him. When he was

> born

> > 2 months ago (4 minutes of pushing, so an easy birth) he had a cute

> > little round head. I could not get him to nurse on my right

> breast,

> > so the lactation consultant told me to try the football hold. It

> was

> > pretty uncomfortable for me, but I supported by the back of

> his

> > head. I think with all the nipple pain(that a lot of us have in

> the

> > early days of nursing) I might have been clenching my hand around

> his

> > head while he was nursing. At my 2 week appointment the doc

> noticed

> > " significant flattening " and asked about the birth. I told her it

> was

> > pretty uneventful. Later when I got home and went to feed him, I

> > realized that the malformation of his head fir perfectly into my

> hand

> > when I nursed him. I immediately called the Lactation consultant

> and

> > told her that her instruction had caused my son to have a deformed

> > head!! SHe told me, NO, you need to support him at his neck - at

> the

> > base of his head....a little too late, unfortunately. For the

> past 6

> > weeks, we have been doing repo and the two stretches. I went to

> > Cranial tech and have a follow up there this week. I also went

> for my

> > 2 month last week. 's head has definitely improved, but

> there

> > is still a decent sized flat spot and his ear misalignment is

> pretty

> > bad. I am pretty confident that the head would round itself out on

> > it's own, but I am more concerned about the ear/facial assymetry.

> I

> > think we will give C.Tech the go ahead to get things rolling this

> week

> > if they thing a helmet would help. He is so young, I am hoping we

> > have quick results. I look forward to learning more from all of

> you.

[Guest guest]

welcome to the group

my hsuband is 35 and he also has psoriiatic arthritis.he was giving enbrel

injections for a year 2 times a week and now he has developed a nerve disease

called chronic inflammatory demylenating polyneuropathy(cidp)the doctors made

him stop enbrel because there are some people who have got the same disease

after taking enbrel.my husband has numbmess in his legs and feet and a lot of

pain.he is in the hospital every month.they are thinking of placing a pain pump

inside to see if it helps him...so i know what you and your family are going

through.we have a 2 yr. old and a 10 yr.old and my husband feels the same way

you do.i thought when he was diagnosed with psoriatic arthritis it was bad but

now i think this nerve disease is worse.he will proabbly be in a wheel chair

someday because of the numbness he is already using a shower chair to shower

because it is to hard for him to stand.if you need to talk feel free to email me

..just keep praying !that is how i make it through

the day

god bless

misty from pennsylvania

ladyk9677 <ladyk9677@...> wrote:

Hi All,

I is so inspiring to read all the stories that sound so much like

mine. I'm so happy to have found this group that can actually

understand that Psoriatic Arthritis is REAL and the way I feel

everyday is not just in my head.

My husband and I just bought a new house November 2005. After we

were all moved in a sorta settled I began to not feel well. By the

first of January 2006 I was hurting so bad that I could hardly move.

In March 2006 I was diagnosed with Psoriatic Arthritis. I was 28

years old and have been very active all my life. Now I have turned

29 and I have no energy at all. Between the pain and fatigue, I do

good now just to go to work everyday. I have a 5 year old daughter

that wants to be played with and so many things that someone my age

should be able to do with no problem. Bless my husband for being so

understanding to me because I'm nowhere near the person now that I

was when he married me. I would have never thought that at age 15

when I was diagnosed with Psoriasis that it would lead to this.

I live on anti-inflammatory medication and Tylenol Extra Strength.

My doctor has told me about the other options out there right now

but the all scare me with the side effects.

I'm very Spiritual and pray several times a day. Sometimes I see

others with what I consider to have alot worse problems than mine

and I not only sypathize with what they are going through but also

it makes me feel sorta shameful for complaining when I'm having one

of those " Bad Days " . I suppose everything is for a reason and there

is some learning to do from this.

Kim

[Editor's Note: Kim, we all understand how scary some of the medications can be,

however, PA is a progressive disease. None of the medications you are currently

taking will do ANYTHING to stem the progression of the disease. Once you are

more scared of how bad this disease can get if it progresses, you may come to

see that the medications are far less scary than this disease left unchecked.

Please don't feel that you have nothing to complain about since there are others

who feel worse than you. You are in pain. You can't do all the things you would

like to do. You can't give your daughter all the energy you would like to. Those

all sound like legitimate reasons to complain to me! Look at it this way: a

person with a broken leg in two places has as much reason to complain about the

pain as the person with a broken leg in 3 places. The only person I've seen on

this list who didn't have a reason to complain was the person whose primary

regret was that she couldn't drink with

abandon. We understand to a meaningful degree what it must be like to live in

your shoes. We also know how important a role a positive attitude plays in all

life situations. Positive energy isn't a cure, but you can have PA and be

negative and down or you can have PA and be positive and upbeat a lot of the

time. We can't control PA, but we can stem the progression through medications

AND we can control the amount of joy we let ourselves experience. Keep the

faith. Kathy F.]

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

How low will we go? Check out Messenger’s low PC-to-Phone call rates.

[Guest guest]

Glad to have you with us, Ladyk/ Kim.

You didn't sound like you were complaining to me either. It's OK to

complain now and then. Here, misery loves company. The wallowing in

self-pity bit won't get you far with the rest of the world, however,

unless you like being alone.

Best wishes to you, and don't over-do it. A full-time job can be

exhausting with this disease.

Brent

[Guest guest]

Hi Kim,

I strongly agree with Kathy. Every word. Serious diseases require

serious meds, but for most of us these meds cause no significant

problem and can induce significant to complete relief of symptoms

while preventing or minimizing furthur bone destruction. You are very

young - don't mess around with your young bones - protect them. Let a

rheumatologist recommend damage preventing dmard therapy. Be patient,

it takes 3 months miminum to know if something is really working or

not - although I had some relief right away it took me 6 months to get

on enbrel and that made a large improvement for me.

Good luck and take care -

> [Editor's Note: Kim, we all understand how scary some of the

medications can be, however, PA is a progressive disease. None of the

medications you are currently taking will do ANYTHING to stem the

progression of the disease. Once you are more scared of how bad this

disease can get if it progresses, you may come to see that the

medications are far less scary than this disease left unchecked.

Please don't feel that you have nothing to complain about since there

are others who feel worse than you. You are in pain. You can't do

all the things you would like to do. You can't give your daughter all

the energy you would like to. Those all sound like legitimate reasons

to complain to me! Look at it this way: a person with a broken leg

in two places has as much reason to complain about the pain as the

person with a broken leg in 3 places. The only person I've seen on

this list who didn't have a reason to complain was the person whose

primary regret was that she couldn't drink with abandon. We

understand to a meaningful degree what it must be like to live in your

shoes. We also know how important a role a positive attitude plays in

all life situations. Positive energy isn't a cure, but you can have

PA and be negative and down or you can have PA and be positive and

upbeat a lot of the time. We can't control PA, but we can stem the

progression through medications AND we can control the amount of joy

we let ourselves experience. Keep the faith. Kathy F.]

>

[Guest guest]

Hi Everyone,

I just wanted to say that a appreciate all the emails and advice

everyone has given me from my very first post. I must say I have

done alot of thinking and decided to go ahead and try the " Big Gun

Drugs " for my PA. I'm still a little worried about the side effects

but I guess everybody is to some degree. Just hearing how they have

made such a big difference in most of you, has given me

encouragement to call my Dr. and see what he thinks I should try

first. I called today for an appointment and couldn't get one until

December. So then I called the Nurse and left a message. They

actually called me back soon after(thats a first). My Dr. is out

until Monday but hopefully then we can start something soon. There

are only 2 offices for this that I can go to in my area and the

other office orginally wanted to set an appointment for me a year

from now. I thought HA you've got to be out of your mind. So I guess

this is going to work out good.

By the way, I first started noticing the finger nail and toe nail

changes 2 years ago. I didnt have any pain then though. I thought

that since I do hair and nails that I maybe picked up something. So

I went to my GP and they gave me Lamisil. Guess what, it never

worked. So, I have just been dealing with being self concious of it

since (not including the self conciousness of the Psoriasis.) It's

like a light bulb has went on since I found this Group.

Thanks to everyone, you guys are great!

Kim

[Editor's Note: Kim, that's a big step you've just taken and you are to be

commended for the strength you show by taking it. Generally, MTX is not advised

for people who still intend to have children so if that's in your plans, you

should be sure to discuss your concerns with your rheumy. Whatever is

prescribed for you, please feel free to come to this group with questions and

concerns. You should know, however, that every person is different and what may

work for one person may cause serious side effects in another. We'll be able to

go through this with you, but no one can tell you what the " right " medication

will be for you. You may have to try more than one before you find something

that helps you. You'll never know how much damage you may have prevented by

being willing to try a " big gun " , but if it helps to save even one joint or

helps to you to live with less pain, it will be worth it. Kathy F.]

>

> Hi Kim,

> I strongly agree with Kathy. Every word. Serious diseases require

> serious meds, but for most of us these meds cause no significant

> problem and can induce significant to complete relief of symptoms

> while preventing or minimizing furthur bone destruction. You are

very

> young - don't mess around with your young bones - protect them.

Let a

> rheumatologist recommend damage preventing dmard therapy. Be

patient,

> it takes 3 months miminum to know if something is really working or

> not - although I had some relief right away it took me 6 months to

get

> on enbrel and that made a large improvement for me.

>

> Good luck and take care -

>

>

> > [Editor's Note: Kim, we all understand how scary some of the

> medications can be, however, PA is a progressive disease. None of

the

> medications you are currently taking will do ANYTHING to stem the

> progression of the disease. Once you are more scared of how bad

this

> disease can get if it progresses, you may come to see that the

> medications are far less scary than this disease left unchecked.

> Please don't feel that you have nothing to complain about since

there

> are others who feel worse than you. You are in pain. You can't do

> all the things you would like to do. You can't give your daughter

all

> the energy you would like to. Those all sound like legitimate

reasons

> to complain to me! Look at it this way: a person with a broken

leg

> in two places has as much reason to complain about the pain as the

> person with a broken leg in 3 places. The only person I've seen on

> this list who didn't have a reason to complain was the person whose

> primary regret was that she couldn't drink with abandon. We

> understand to a meaningful degree what it must be like to live in

your

> shoes. We also know how important a role a positive attitude

plays in

> all life situations. Positive energy isn't a cure, but you can

have

> PA and be negative and down or you can have PA and be positive and

> upbeat a lot of the time. We can't control PA, but we can stem the

> progression through medications AND we can control the amount of

joy

> we let ourselves experience. Keep the faith. Kathy F.]

> >

>

[Guest guest]

The side effects and bone destuction from the disease are worse than almost

any of the drugs side effects.. If you are young you are lucky to have

choices in the medications you can choose and take . Make an informed decision

..

that's all you can do .

[Guest guest]

Hi Kim!

Welcome to the group! Your story sounds very similiar to my own. I

fought the PsA diagnosis for over a year and now after joining this

group and reading all the stories, I have realized not only do I

know PsA is real, but that despite all my pain and new found

limitations, I am pretty lucky. After much thought and reflection,

I think I have had signs of PsA for at least 10 YEARS.

I love this group and the guys and gals in it because you are free

to whine and complain...and there will always be someone who has

gone through what you are. Especially at our young age, when we

look and seem 29 but actually feel 40, it is hard to make people

understand what we are going through.

Try out all the meds...yeah, the side effects are scary. In my

case, Enbrel started to cause MS-like symtoms. But since I listened

to my body and told my Dr quickly, I am off Enbrel. There are a lot

of medications to choose from..now I am taking Sulfalasazine. I

think it is important to know that this is it, we have PsA. We need

to take control of the situation and help ourselves.

Learn to listen to your body - and don't second guess it. You know

you are not crazy! Write everything down in a journal, including

food. And bring that to all your many Dr Appts.

I also have designated my Rhuemy as my " central Dr " and every Dr I

see, I have them fax or mail their comments to her. I also get

copies of all my tests and x-rays/MRIs. WHy? Well, I am paying for

them...might as well keep track because as much as Drs are well-

intended, they can't keep up with all of us all the time!

Good luck, and don't worry. I think that first major flare is

always the worst and last awhile. When my back first went out, I

was a mess for over a year. I couldn't walk, go grocery shopping or

do laundry. Add to it, I was on my own since all my friends and

family thought I was making it up. At least you know what is

wrong...and it seems you have a wonderful husband to help you out!

Kat

>

> Hi All,

>

> I is so inspiring to read all the stories that sound so much like

> mine. I'm so happy to have found this group that can actually

> understand that Psoriatic Arthritis is REAL and the way I feel

> everyday is not just in my head.

>

> My husband and I just bought a new house November 2005. After we

> were all moved in a sorta settled I began to not feel well. By the

> first of January 2006 I was hurting so bad that I could hardly

move.

> In March 2006 I was diagnosed with Psoriatic Arthritis. I was 28

> years old and have been very active all my life. Now I have turned

> 29 and I have no energy at all. Between the pain and fatigue, I do

> good now just to go to work everyday. I have a 5 year old daughter

> that wants to be played with and so many things that someone my age

> should be able to do with no problem. Bless my husband for being so

> understanding to me because I'm nowhere near the person now that I

> was when he married me. I would have never thought that at age 15

> when I was diagnosed with Psoriasis that it would lead to this.

>

> I live on anti-inflammatory medication and Tylenol Extra Strength.

> My doctor has told me about the other options out there right now

> but the all scare me with the side effects.

>

> I'm very Spiritual and pray several times a day. Sometimes I see

> others with what I consider to have alot worse problems than mine

> and I not only sypathize with what they are going through but also

> it makes me feel sorta shameful for complaining when I'm having one

> of those " Bad Days " . I suppose everything is for a reason and there

> is some learning to do from this.

>

> Kim

>

>

> [Editor's Note: Kim, we all understand how scary some of the

medications can be, however, PA is a progressive disease. None of

the medications you are currently taking will do ANYTHING to stem

the progression of the disease. Once you are more scared of how bad

this disease can get if it progresses, you may come to see that the

medications are far less scary than this disease left unchecked.

Please don't feel that you have nothing to complain about since

there are others who feel worse than you. You are in pain. You

can't do all the things you would like to do. You can't give your

daughter all the energy you would like to. Those all sound like

legitimate reasons to complain to me! Look at it this way: a

person with a broken leg in two places has as much reason to

complain about the pain as the person with a broken leg in 3 places.

The only person I've seen on this list who didn't have a reason to

complain was the person whose primary regret was that she couldn't

drink with abandon. We understand to a meaningful degree what it

must be like to live in your shoes. We also know how important a

role a positive attitude plays in all life situations. Positive

energy isn't a cure, but you can have PA and be negative and down or

you can have PA and be positive and upbeat a lot of the time. We

can't control PA, but we can stem the progression through

medications AND we can control the amount of joy we let ourselves

experience. Keep the faith. Kathy F.]

>

[Guest guest]

Welcome aboard! I'm also a Jimmy Buffet fan - saw him for the

second time at Jazz Fest in New Orleans this spring. His music

always makes me happy, no matter how down I am. Since my diagnosis

this June, I've been listening a LOT!!

Your quilts are awesome!

About the energy level - I'm finding that my energy level is going

up as the PA is coming under control. I've gone from sleeping 11-13

hours at night with a 1-3 hour afternoon nap gradually down to 9

hours at night with a 15-20 minute afternoon nap. This has happened

gradually as the drugs have started to calm the disease down.

(Before PA, I slept 7-8 hours at night with no nap and had lots of

energy.)

The brain fog is also lifting, but even more slowly. I am halfway

through o Cuelho's " The Devil and Miss Prym. " I've been working

on it all week. This is the first novel I've read since I got

sick. At the worst of it, I couldn't even concentrate well enough

to read a magazine article or watch a sitcom. Finally, my brain is

coming back. Pre-PA I read 3-6 books a week.

Hang in there,

sherry z

>

> My biggest concern at this point is the lack of

> energy. I did a slug-like thing for two months, but

> finally decided that I NEED to do what I enjoy (which

> is always quilt related) – and to be with people.

> Power naps are all good, but the dog isn't good about

> dusting while I nap. And we won't even GO to the

> laundry chore. My brain has gone fuzzy too. At

> work, in quilting and in my reading. I haven't

> enjoyed a new book since June. I've be re-reading old

> favorites – but at least I am out of the kid-lit books

> now (Betsy-Tacy which are similar to the Little House

> books) and into grown up favorites like DaVinci Code

> and Pillars of the Earth..

>

> Thanks for listening…..

>

>

>

>

>

> CMPete

> Quilts With Poodle

>

> '.....now times are rough and I've got too much STUFF!!'

> J.D. Buffett

>

> I have a blog now!! And there is ACTUALLY stuff on it!

> http://cmpetequiltspoodle.blogspot.com/

>

> __________________________________________________

>

[Guest guest]

, you're attitude will get you far. I can relate to you about

living alone. I am a single Mom and my almost 12 year old daughter is

with her Dad 3 nights a week so I go it alone then. She has high

functioning autism and there's only so much she is able to do for me

just because she does not know to do it. But she does alot. And I have

to take care of her when to tell ya the truth, there are times I can

barely take care of myself BUT.......... if I do some simple exercises

in positivity, I can keep my head above water I find. One thing I do is

to name 5 things I am thankful for each day. My daughter and I love to

do this together. Different things work for each of us though. Seems as

if you've found things that work for you like quilts and a special

poodle. You are also blessed that your doctors got to the root of

things right off the bat. That's great news. And you will be blessed by

this group as well. Good to have you here but sorry you needed to be

here. You won't feel so alone here. I know I don't. I don't know what

I'd do without this group. Welcome . -Betz

[Guest guest]

Ditto on the quilts!!! I would love to be a fly on the wall while you're

putting one of those

together. :-)

> >

> > My biggest concern at this point is the lack of

> > energy. I did a slug-like thing for two months, but

> > finally decided that I NEED to do what I enjoy (which

> > is always quilt related) – and to be with people.

> > Power naps are all good, but the dog isn't good about

> > dusting while I nap. And we won't even GO to the

> > laundry chore. My brain has gone fuzzy too. At

> > work, in quilting and in my reading. I haven't

> > enjoyed a new book since June. I've be re-reading old

> > favorites – but at least I am out of the kid-lit books

> > now (Betsy-Tacy which are similar to the Little House

> > books) and into grown up favorites like DaVinci Code

> > and Pillars of the Earth..

> >

> > Thanks for listening…..

> >

> >

> >

> >

> >

> > CMPete

> > Quilts With Poodle

> >

> > '.....now times are rough and I've got too much STUFF!!'

> > J.D. Buffett

> >

> > I have a blog now!! And there is ACTUALLY stuff on it!

> > http://cmpetequiltspoodle.blogspot.com/

> >

> > __________________________________________________

> >

[Guest guest]

D -

Wow - powerful post! Welcome to our little bit of heaven. I'm not

being sarcastic, by the way. This group seems heaven-sent to me.

People who actually understand down to the last detail what I am

going through. People just like me - sometimes very strong,

sometimes weak from pain and fatigue.

I think your phrase " just put some salt on me " will become a new

saying for me. What a perfect word picture of how we feel

sometimes!!!

Thanks for joining and posting,

sherry z

>

> It's not over yet.

> Just one day at a time.

> If I move more now it won't hurt so much later.

> Don't move too much!

> Slow down or you will not be able to do anything tomorrow.

> Ugh. Forgot to let the Enbrel warm up a bit.

> Go that way, it's level ground.

> Darn seat won't adjust right.

> I'm just a witch today.

> cold front/thunder.. Hate that drop in pressure. It hurts!

> I'm a slug.

> Just put some salt on me.

[Guest guest]

please try to accept one of the meds. im a natural/organic foods mgr. and i

fought it as long as i could. i was given mtx and after 6 months i took myself

off thinking that i could handle it with natural foods and positive thinking. i

can honestly tell you that in 4 months i was back to the mtx and very thankful

that it was there for me. i totally believe in taking care of out bodies and

excercise and whole foods. but they dont do a thing for PA. use it with the meds

and you have a good handle on it. without the meds you are putting yourself at

great risk. i do have flare ups from time to time. usually seems to be related

to hormones (LOL) or the weather. i can just about sense it before it happens.

what works for me? a tylenol 3 and a really good cry. then a nap. an

understanding husband also is important! good luck

lorrie

ladyk9677 <ladyk9677@...> wrote:

Hi All,

I is so inspiring to read all the stories that sound so much like

mine. I'm so happy to have found this group that can actually

understand that Psoriatic Arthritis is REAL and the way I feel

everyday is not just in my head.

My husband and I just bought a new house November 2005. After we

were all moved in a sorta settled I began to not feel well. By the

first of January 2006 I was hurting so bad that I could hardly move.

In March 2006 I was diagnosed with Psoriatic Arthritis. I was 28

years old and have been very active all my life. Now I have turned

29 and I have no energy at all. Between the pain and fatigue, I do

good now just to go to work everyday. I have a 5 year old daughter

that wants to be played with and so many things that someone my age

should be able to do with no problem. Bless my husband for being so

understanding to me because I'm nowhere near the person now that I

was when he married me. I would have never thought that at age 15

when I was diagnosed with Psoriasis that it would lead to this.

I live on anti-inflammatory medication and Tylenol Extra Strength.

My doctor has told me about the other options out there right now

but the all scare me with the side effects.

I'm very Spiritual and pray several times a day. Sometimes I see

others with what I consider to have alot worse problems than mine

and I not only sypathize with what they are going through but also

it makes me feel sorta shameful for complaining when I'm having one

of those " Bad Days " . I suppose everything is for a reason and there

is some learning to do from this.

Kim

[Editor's Note: Kim, we all understand how scary some of the medications can be,

however, PA is a progressive disease. None of the medications you are currently

taking will do ANYTHING to stem the progression of the disease. Once you are

more scared of how bad this disease can get if it progresses, you may come to

see that the medications are far less scary than this disease left unchecked.

Please don't feel that you have nothing to complain about since there are others

who feel worse than you. You are in pain. You can't do all the things you would

like to do. You can't give your daughter all the energy you would like to. Those

all sound like legitimate reasons to complain to me! Look at it this way: a

person with a broken leg in two places has as much reason to complain about the

pain as the person with a broken leg in 3 places. The only person I've seen on

this list who didn't have a reason to complain was the person whose primary

regret was that she couldn't drink with

abandon. We understand to a meaningful degree what it must be like to live in

your shoes. We also know how important a role a positive attitude plays in all

life situations. Positive energy isn't a cure, but you can have PA and be

negative and down or you can have PA and be positive and upbeat a lot of the

time. We can't control PA, but we can stem the progression through medications

AND we can control the amount of joy we let ourselves experience. Keep the

faith. Kathy F.]

__________________________________________________

[Guest guest]

Hi ,

I read your post well most of it at this point

anyway. I find it very interesting and wanted to

email you. It seems you and I are quite similar

in that we are bother newly diagnosed with PA and

both insulin dependant diabetics. I have lived

in Iowa for about hmmmm 6 yrs i guess it is

now. I live in a small town between Iowa City

and Davenport aka the Quad Cities. So in other

words I live in east central Iowa. If you would

like I would love to talk to you some more via

email. My email addy is iowashopperguy@...

I am really looking forward to hearing back from you!!!!!

Take care,

At 10:06 AM 9/28/2006, you wrote:

>Hello there! I am CMPete (aka ). I am 50yo

>widow and I have lived in Iowa for 5 years. My

>extended family (parent, son, brother and step

>daughter) live hundreds of miles away. I live with a

>fluffy poodle who is my furry child. I read

>constantly. I listen to Jimmy Buffett. And I make

>quilts. LOTS of quilts. (see my quilts at

><http://community.webshots.com/user/cmquilts>http://community.webshots.com/user\

/cmquilts)

>

>

>I was just diagnosed with PA on Tuesday.

>After reading some of the discussions on the group

>site, I realize that I am very fortunate to have a

>relatively quick diagnosis. I began feeling lousy

>just before Thanksgiving 2005. I was just tired and

>achy and had NO energy. I wrote it off to stress

>(this was the weekend DS left for Iraq) and a touch of

>the flu. The psoriasis began shortly thereafter. I

>thought it was some weird diabetic thing, and kept on

>going. My shoulder began to be stiff in the spring –

>right after a snowfall. Well, it IS the shoulder I

>sleep on all of the time – maybe that is causing it…In

>July, when I wore shorts for the first time, I saw

>(SAW, not felt!) that one knee is very swollen. I

>finally went to Ortho when my shoulder kept me from

>sewing and I was walking funny. (the knee had

>stiffened some by then). He did blood tests and gave

>me NSAIDS. I waited two months for an initial

>appointment with Rheumetologist. (while my knee got

>more stiff and very painful) His examinination came

>up with the ‘usual list of suspects’ (RA, PA, FM,Lupus

>and Lyme), but my psoriasis was oddly distributed, so

>PA was on the list, but not at the top. Dermatologist

>confirmed psoriasis and Rheum. said Eureka! He

>started me on Celebrex, MTX and mild pain pills. No

>side effects so far, but I’ve only been there one day!

>

>So far, it appears that I have avoided any permanent

>joint damage. In the last week, my hands are getting

>a bit stiff, and the psoriasis is spreading.

>

>I must confess that I was delighted that these doctors

>did NOT say ‘Its because you are diabetic’ I am SO

>tired of that bs! I swear, if I had a broken toe,

>they would say it was because of my blood sugar…Being

>diabetic (Type 1 ½ - which is an insulin dependent,

>auto-imune thing) steroids are to be avoided. But on

>the bright side, I am TOTALLY used to giving myself

>shots (like 5 per day) so Enbrel type meds are not

>that big a deal for me. I know that some of you do

>struggle with that routine, and I absolutely

>understand. In some ways being diabetic may help me

>through this whole process. I cope with that easily.

>I can cope with PA. I need to learn, and I need some

>support, but I CAN cope. I’m not crazy about all the

>pills in my medicine chest now, but I am frustrated

>enough to make those pills ok.

>

>I am VERY lucky to work for a great company that is OK

>with work from home when needed (I’m a technical

>writer). My boss / department are supportive to the

>point that they have moved in a chair for me to use

>during our daily stand-up status meeting. (we stand

>so we don’t get too long winded….)

>

>Part of me is totally freaked out and scared. Living

>alone changes the color of the things that all of us

>face. There is no one to get stuff from the basement,

>to help open cans or to take out the trash, or put on

>a blouse. Little things, sure, but the accumulation

>of those tiny things can make the difference between

>struggle and coping.

>

>I'm working on postive thinking, but I have been doing

>that so much of that in the past 5 years to get thru

>DH's death, move,job loss, another move, adjusting to

>new home, DS's deployment, etc that I am just about at

>the end of my rope, and the PA feels like the final

>straw!!

>

>My biggest concern at this point is the lack of

>energy. I did a slug-like thing for two months, but

>finally decided that I NEED to do what I enjoy (which

>is always quilt related) – and to be with people.

>Power naps are all good, but the dog isn’t good about

>dusting while I nap. And we won’t even GO to the

>laundry chore. My brain has gone fuzzy too. At

>work, in quilting and in my reading. I haven’t

>enjoyed a new book since June. I’ve be re-reading old

>favorites – but at least I am out of the kid-lit books

>now (Betsy-Tacy which are similar to the Little House

>books) and into grown up favorites like DaVinci Code

>and Pillars of the Earth..

>

>Thanks for listening…..

>

>CMPete

>Quilts With Poodle

>

>'.....now times are rough and I've got too much STUFF!!'

>J.D. Buffett

>

>I have a blog now!! And there is ACTUALLY stuff on it!

><http://cmpetequiltspoodle.blogspot.com/>http://cmpetequiltspoodle.blogspot.com\

/

>

>__________________________________________________

>

[Guest guest]

Dear Judy Tooshooze,

Believe it or not I just read your letter to the Rheumatic Group from last

year, 2005. Its was saved in special file I keep on MCTD. Your story is very

inspiring (below).

I have not been diagnosed with MCTD. In fact I have no specific diagnosis

other then likely " connective tissue disease " based on how I responded to

prednisone and other manifestations and a high ANA. I have pain in my feet or

calves or fingers, etc, at different times on different days. Not much

consistency except for the foot pain. I take Plaquenil and Prednisone together,

supposed to wean off of the latter. I have been to over 15 doctors in 3 years;

including Mayo. To me they are all bums who know very little and care even

less.

I am wondering still after 3 plus years of this crap if AP is right for me.

The Rheumy I am seeing now would NOT prescribe these meds I'm quite sure.

Are my symptoms at all similar to what you have or had? Do you think I should

seek an AP doctor?

in Indiana

Tooshooze@... wrote:

Hello,

Seven years ago I was at the end of systemic scleroderma. I was

given 2 weeks to live. I promise you it did not miraculously leave my body by

itself in some sort of instant remission. That is when I started the AP. It

was very aggressive treatment. I went to TX and Ethel Snooks led me through

my treatment. I live in FL. I got IV's daily for 5 weeks and then Four a

week for months then three a week for months, Then 2 a week for months and

etc. I still get an occasional IV. I still have some to go. My DX was

systemic scleroderma, systemic lupus, polymiositis, and RA. I had and enlarged

heart with pericardial effusion, kidney's failing, Hard as a brick all over,

freaky looking and blood pressure over 200 with high dose BP med's. I was a

time bomb! It was a matter of whether my kidney's went or my heart stopped, or

a stroke. Over time I have been on many different antibiotics. The

micoplasma has many different flavors which takes many different antibiotics to

kill

these things. I havn't ever met someone who had scleroderma that just all

of a sudden went into remission??? Yet because of my recoveery I have spoken

to groups of people and many individuals with MCTD. The ones who did not

give the AP a chance are now deceased. I once felt guilty all of the time

because I thought maybe I didn't stress the importance of it all enough. I

felt

guilty for there demise. But I know now you can take a horse to water but

you can't make him drink. It is a very sneaky disease. You don't know that it

is growing, growing, growing, in your body at all times. You can't see it

and you don't always feel it growing. Then you are to far gone. If you can

stop it in the beginning it will not be as long on the treatments. Then you do

maintenance treatment. I have a lot of damage. It ruined my bowel

sphincter muscle, my esophagus, some nerves and muscles. My hands are not as

taunt

and clawlike as they were and I have had physical therapy, but they are not

what they once were. I thank God that I am alive and doing greeeeeeat and so

does my family. I have no more joint pain.

I am 5'2 " and wear a size 5 and very active and you would never know

I was ever ill, unless I told you. I went to a dinner party last night and

their were 2 DR's there that know my daughter and had seen me 7 yrs ago. They

are amazed with my recovery. One of the DR's wrote my first scripts for

minocin for me 7 yrs ago. He was appeasing me by doing so, but he now says it

works. I was told last night by him that you don't win with systemic

scleroderma and that I need to write my story. He said he hasn't ever known

someone

to to recover from it.

If you were going to die from terminal illness wouldn't you try

anything? That's what I did and it was the right thing. Praise the Lord.

Sincerely, Judy Duncan, Clearwater Florida

[Guest guest]

Hello,

The symptoms are not the same. I would see a AP Dr and see what it is.

There are blood tests that can tell you what the problem is. LOL, Judy

Duncan

dr