Re: More about me...

November 19, 2004

Dear Lakethundermom,

may the earth open up and swallow me whole if i ever complain

again.... my oh my you have been through so much... and yes, i

understand the feeling of 'aloneness' you expressed - i always use

imagery and have so often felt like i was alone on an island... this

board is a godsend - i always feel all these warm hugs all around me

whenever i come on line.

.... sorry for the lower case today - me ol' fingers and wrists...

well, we all know, don't we !

>

> Thanks for the warm welcome. I am glad to know there is somewhere

to

> vent/share with others with the same problems. Here is a little

about

> me. I am a 33 year old married (16 yrs) mother of two children,

ages

> 12 and 15. I live in a rural community in Kentucky. I know of

NOONE

> else around with psoriasis or pa anywhere close to the extent of

> mine. Psoriasis covers over 60% of body. It stays flared up most

of

> the time, I am sure due to stress. PA involvement on Sacr. region

of

> spine, tendonitis in both achilles (sp) tendons, nails of feet and

> hands, both ankles and my right hand is mildly involved right now.

I

> have been on Methotrexate more than once...oral and injections,

> Soriatane, Cyclosporin, PUVA therapy, Tar baths, Tazarotene (it is

a

> clinical trial oral med from the Allergan Co.), all types of

topical

> treatments, and I take Adorax for itching. I have tried to get on

> Enbrel, but my insurance refuses to pay but a third of the cost and

I

> don't qualify for disablilty or medicaid at this time. I am on my

> third doc in 8 years, and am going to a Research Institute 2 hours

> away from home(thus the clinical trial drug...they pay for

everything

> involved in my care right now)once a month for pictures, labs,

exams,

> etc... I am hoping to get in an Enbrel or Remicade study in the

> spring. Any corespondence is appreciated. Cheers to the founder of

> this site!!!

November 21, 2004

---

Hi,

Sorry I didn't welcome you earlier...I have been so sick the past few

days and couldn't keep up with the latest posts. If I missed anyone

else new I'm sorry. Also sorry I didn't write messages to everyone

with different questions-it seems that everyone questions were

answered with the wonderful people in our group. I just wanted

everyone to know that if I don't post I still care about everyone...

God Bless, Sue in Michigan.

In , " lakerthundermom "

<lakerthundermom@w...> wrote:

>

> Thanks for the warm welcome. I am glad to know there is somewhere

to

> vent/share with others with the same problems. Here is a little

about

> me. I am a 33 year old married (16 yrs) mother of two children,

ages

> 12 and 15. I live in a rural community in Kentucky. I know of

NOONE

> else around with psoriasis or pa anywhere close to the extent of

> mine. Psoriasis covers over 60% of body. It stays flared up most

of

> the time, I am sure due to stress. PA involvement on Sacr. region

of

> spine, tendonitis in both achilles (sp) tendons, nails of feet and

> hands, both ankles and my right hand is mildly involved right now.

I

> have been on Methotrexate more than once...oral and injections,

> Soriatane, Cyclosporin, PUVA therapy, Tar baths, Tazarotene (it is

a

> clinical trial oral med from the Allergan Co.), all types of

topical

> treatments, and I take Adorax for itching. I have tried to get on

> Enbrel, but my insurance refuses to pay but a third of the cost and

I

> don't qualify for disablilty or medicaid at this time. I am on my

> third doc in 8 years, and am going to a Research Institute 2 hours

> away from home(thus the clinical trial drug...they pay for

everything

> involved in my care right now)once a month for pictures, labs,

exams,

> etc... I am hoping to get in an Enbrel or Remicade study in the

> spring. Any corespondence is appreciated. Cheers to the founder of

> this site!!!

November 21, 2004

Dear Sue, I'm sorry to hear you are feeling so bad. I know what you mean

about still caring for everyone, even on days when we can't post. I have

that from time to time with my fingers. That's what is great about this

group. If some of us are ill and can't answer, someone else always steps in

and helps out. Normally no one gets left out. Anyway, I hope you are

feeling better. I take it the problem is PA? IF it is a flare, hang in

there. When you are in the middle of one, it seems like there is no hope

and no way it will ever end. They do let up from time to time. Take care

and feel better. Love, Fran

[ ] Re: more about me...

---

Hi,

Sorry I didn't welcome you earlier...I have been so sick the past few

days and couldn't keep up with the latest posts. If I missed anyone

else new I'm sorry. Also sorry I didn't write messages to everyone

with different questions-it seems that everyone questions were

answered with the wonderful people in our group. I just wanted

everyone to know that if I don't post I still care about everyone...

God Bless, Sue in Michigan.

November 21, 2004

---

Hi Fran,

Thanks so much for the reply. My PA has been bothering me-my Rheumy

also thinks I have Fibro. I see you have this as others-can you tell

me what the symtoms are? I would really appreciate it. He thinks I

have this along with my PA.

Thanks again and God Bless, Sue.

In , " Fran Mishler " <fran@m...>

wrote:

>

> Dear Sue, I'm sorry to hear you are feeling so bad. I know what

you mean

> about still caring for everyone, even on days when we can't post.

I have

> that from time to time with my fingers. That's what is great about

this

> group. If some of us are ill and can't answer, someone else always

steps in

> and helps out. Normally no one gets left out. Anyway, I hope you

are

> feeling better. I take it the problem is PA? IF it is a flare,

hang in

> there. When you are in the middle of one, it seems like there is

no hope

> and no way it will ever end. They do let up from time to time.

Take care

> and feel better. Love, Fran

>

November 21, 2004

Dear Sue, there are some great site on line for fibro and all the

information you would ever want to read. I'll list them at the end of this

email. I know how bad Fibro can hurt. It can start out as a general

feeling of just uncomfotableness to all at once your shoulder or arm feels

like it's burning or on fire. Most of the time, you are exhausted. You

dont' sleep well. You are down and depressed. You can have migraines, dry

eyes, IBS, stomach problmes-like heart burn, muscle spasms, constant and

chronic pain, sore spots all over, and the list goes on... It can be one

really miserable disease. A lot of my worst pain is along side my legs or

arms. Soemtimes it will run all along your body or sometimes you just have

a really bad spot in the middle of your chest. it never makes any reason,

or sense on how to avoid it. The only thing that really makes it worse is

stress and over doing it physically. It hurts to move, yet the doctors

tell you that's the best thing you can do for yourself. Unfortuantely it is

true. If you can do things like swimming or water sports that helps since

the water supports you and takes the presure off some of the tender points.

They seem to go with PA a lot and probably goes along with a lot of other

diseases as well. Here are a few of the sites I like so far I've found.

Co-Cure...www.co-cure.org/USA_FL.htm, Fibro-Hugs.. www.fibrohugs.com ,

(My favorite and I got their newsletter for years..Fibromyalgia Network--

www.fmnetnews.com. I hope some of these help in some way. Take care and

hang in there. It really can be helped with the right medications and if

you can stick to a regular routine. Love, Fran

[ ] Re: more about me...

---

Hi Fran,

Thanks so much for the reply. My PA has been bothering me-my Rheumy

also thinks I have Fibro. I see you have this as others-can you tell

me what the symtoms are? I would really appreciate it. He thinks I

have this along with my PA.

Thanks again and God Bless, Sue.

November 22, 2004

---

Hi Fran,

Thanks so much for the information. It sounds like I do have it-my

Rheumy thought so too. I have had bad migraines for years and

usually start vomiting with them when they got so bad. I will look

up those web sites and check out the information. If PA isn't bad

enough that we have to have this also. Some days I need stronger

faith than other days. Thanks again.

God Bless, Sue.

In , " Fran Mishler " <fran@m...>

wrote:

>

> Dear Sue, there are some great site on line for fibro and all the

> information you would ever want to read. I'll list them at the end

of this

> email. I know how bad Fibro can hurt. It can start out as a

general

> feeling of just uncomfotableness to all at once your shoulder or

arm feels

> like it's burning or on fire. Most of the time, you are

exhausted. You

> dont' sleep well. You are down and depressed. You can have

migraines, dry

> eyes, IBS, stomach problmes-like heart burn, muscle spasms,

constant and

> chronic pain, sore spots all over, and the list goes on... It can

be one

> really miserable disease. A lot of my worst pain is along side my

legs or

> arms. Soemtimes it will run all along your body or sometimes you

just have

> a really bad spot in the middle of your chest. it never makes any

reason,

> or sense on how to avoid it. The only thing that really makes it

worse is

> stress and over doing it physically. It hurts to move, yet the

doctors

> tell you that's the best thing you can do for yourself.

Unfortuantely it is

> true. If you can do things like swimming or water sports that

helps since

> the water supports you and takes the presure off some of the tender

points.

>

> They seem to go with PA a lot and probably goes along with a lot of

other

> diseases as well. Here are a few of the sites I like so far I've

found.

> Co-Cure...www.co-cure.org/USA_FL.htm, Fibro-Hugs..

www.fibrohugs.com ,

> (My favorite and I got their newsletter for years..Fibromyalgia

Network--

> www.fmnetnews.com. I hope some of these help in some way. Take

care and

> hang in there. It really can be helped with the right medications

and if

> you can stick to a regular routine. Love, Fran

January 19, 2005

Charlotte,.....I'm glad your hubby is there for you. Your very lucky,

and awesome that he helps out as much as he can.

So, your rheumy can't find out your dx? Have you thought of getting

a second opinion, and try to get a dx? I know how hard it is to not

really know what's wrong with you.

There are oral Methotrexate pills, if it was working for you. I

take them, and they are not very expensive at all.

You be careful with your cold, hope it goes away soon, Tawny

>

> Hi everyone,

> I hope I too can get to know you all better as well. As I said

> before, I am 24 years old, married to a wonderful man who helps me

> with everything that he can. Sometime you need someone who has been

> there though. I have been 'unofficially' diagnosed with RA for

about

> 2 1/2 years now. But have had symptoms for atleast 5-6 years. My

> Rheumy can't say for sure if it's RA, Lupus, or some other rheumatic

> disease.. so she is just treating my symptoms and doing what she can

> for now. I see a pain specialist as well to help cope with that

> aspect. I am currently taking prednisone, Glucophage(for my

> Polycystic Ovarian Syndrome,) Hydrocodone and Duragesic patches for

> pain.. I was injecting Methotrexate once a week but they stopped

> making it and I no longer have insurance so I can't afford any other

> meds than what i'm taking now. I will have insurance soon though

> thank God. I try my hardest everyday to stay upbeat.. I currently

> have a nasty cold that I cannot get rid of. Going on my third week

> with that now. I live in Southeast Texas. I am not currently

> working, but will hopefully be able to find something soon that I

can

> do from home. I've been married for 7 years and want to have a

child

> desperately, but I'm scared that my body won't let it happen.. I

know

> it is going to be hard to stop taking all of my meds, but I can do

> anything if it means I can have a child... Well, that is a little

bit

> about me... I'm looking forward to talking with you all and getting

to

> know you better.. And more importantly having someone to speak with

> when this horrible disease is too much to bear.

> Charlotte

January 19, 2005