Re: New kid on the block...anyone with Hemachromatosis as well?

[Guest guest]

Hi Betsy:

There is one item you said that concerns me. You are taking the ultracet,

and that has Tylenol in it, which can be hard on the kidneys and liver. I

wonder if you might be safer on the Ultram, same med. just no tylenol.

Tylenol has never done anything for me. Anyway, just a suggestion. Good

Luck...

Jeanette

[ ] New kid on the block...anyone with

Hemachromatosis as well?

I was diagnosed with PA 3 years ago after having classic symptoms

half of my life. I'll be 45 next month.I was hospitalized for 2

weeks when I was 19 with stiffness and pain in my hips. At the time

my eyes were so red there were no whites to be seen and my hands

were covered in a rash, particularly around my nails. I asked if all

of this could be connected or did I just have the worst luck in the

world. They chalked it up to bad luck. Was PA not known in 1981? So

I went home with a cane and limped around for a few months. Then I

felt better so I started running. They never came up with a

conclusion and I could not help but think that if it was this bad at

19, what would it be like at 40? So I ran. I ran 5 miles a day. I'm

not sure if it was to prove that I was ok or if it was just that I

was afraid I might not be able to run some day so I was just going

to run my tail off right then. But I ran. For 3 years I ran 5 miles

a day or more. I para-sailed, and white water rafted. Any crazy

thing I could do I did. (I was a sissy chicken as a kid. I got over

it). Now I limp. I call it the " Fred Sanford " on a bad day

and " Huggy Bear " on a moderate day (the arm swing gives me

momentum...and incredible style). Most days my hands work as they

would if I were wearing wool gloves. Last year was when this disease

started getting ugly on me. I have been taking Plaquinel since my

diagnosis. I just did a month of Prednisone and have thankfully

weaned off of it. Not going there again unless I'm dying. It did not

give me that much relief. I tried Naprosen....wore off in 4 hours. I

tried Mobic...wore off in 2 hours. I took my first Ultracet today

and I got relief finally but I'm only 115 lbs so I'm cutting it in

half to keep from getting loopy. I'm loopy enough as it is.

There's a little psoriasis on my hands and wrists now but it's mild.

I'm getting an MRI done of my lower spine as soon as Medicaid

approves it. I have my kit for starting Enbrel as soon as it's

approved. Should take a few days. I'm ready. We talked about chemo

but I have Heriditary Hemachromatosis which means my liver is

compromised already so my Rheumy said chemo was not a good idea for

me. I want to ask my Hematologist about this. I was diagnosed with

the HH in 1998 and went through 8 months of weekly phlebotomies (a

pint a week) in order to get myself anemic. Now it's just CBCs every

4 months to monitor it and a few pints taken if needed. When I was

diagnosed with the HH, I believed that my joint pain and problems

had been due to the iron overload from that disease. The iron can

settle in your joints. I was relieved and thought I was going to be

ok joint-wise. But that was not the case. So I'm wondering if anyone

out there has both diseases as well? Just for the drama...ya might

as well know that I'm a single Mom of a wonderful daughter who has

high functioning autism (Aspergers Syndrome), Obessive-Compulsive

Disorder (severe), and Mood Disorder (the fancy name for Manic

Depression in children). She spent 2 weeks in the psyche ward in

Feb. and it was amazing how far she has come. She is very special. I

heard her praying one day " God...I know you must want me to do

something very wonderful for you someday or I would not have to be

going through this but too tired to go on. I'm so sorry God...I'm so

sorry " . We talked about her favorite poem...Footprints in the Sand.

For those of you not familiar with it, it's a poem about a person's

life journey. The writer complained that when he needed God the

most, he only saw one set of footprints in the sand instead of the

usual 2 sets (his and God's). God told him that was when He carried

the writer. My daughter told me she was too tired to be be carried

and she did not understand why we could not rest on our journey in

life just like we do when we are traveling. So we decided to add a

verse called Buttprints in the Sand. Sometimes you just need to sit

and watch the waves roll in. That's what I'm doing right now. We are

both learning how to sculpt our lives around our diseases without

becoming our disease. We are determined to be more. I am hoping this

group can help in that quest. I was in denial last year. I limped

and pretended I was not limping. Maybe I was just too wrapped up in

keeping well to admit I was not well myself. requires

constant care and I am diligent with her. There seems to be no time

for much else. I lost my job managing an antiques business that I

built from the ground up due to my PA. It concerns me. I have always

been so active. I am praying it will get better but trying to learn

how to live this way just in case it does not. That's my story.

I'll take all the help I can get and hope that I can be of help as

well. -Betsy

[Guest guest]

I'm going to ask my rheumy. Tylenol does nothing for me either. I did not know I

had options with this one. That's why I'm here. Thanks Jeanette. -Betz

Jeanette French <yonder@...> wrote: Hi Betsy:

There is one item you said that concerns me. You are taking the ultracet,

and that has Tylenol in it, which can be hard on the kidneys and liver. I

wonder if you might be safer on the Ultram, same med. just no tylenol.

Tylenol has never done anything for me. Anyway, just a suggestion. Good

Luck...

Jeanette

[Guest guest]

Hi Betsy,

Your post is interesting to me. I have PA and was diagnosed about 4

years ago. I am successfully treating with a low dosage of Methotrexate.

For me this is like a miracle drug. I went from barely walking to 99%

normal. And Zero side effects.

What interested me was your Hemochromatosis. I posted a while back to

see if anyone had a connection. My Dad had Hemochromatosis, he has

since died from cancer. I got tested for Hemochromatosis and it seems I

am a carrier, but probably do not have the disease. (I have one gene

and evidently it takes two to have the disease) I say probably, because

while the dr. says I am only a carrier, it's not conclusive that I will

not ever have the disease. Even wierder, my sister also has one gene

and is starting to show possible symptoms of PA.

I just wonder if there is some sort of connection...

Furthermore, You should be concerned becuse many drugs for treating PA,

like Methotrexate, can have detrimental effects on your liver, as

Hemochromatosis can. So, you can see why I was concerned using MTX for

4+ years.

At any rate, learn all you can. Talk frankly with your Rheumy.

Hopefully you can choose a course of treatment that will work for you.

Stay Well,

[Guest guest]

Wow, Betsy... what a story! Welcome to the group....

You have a great sense of humor... I loved reading your email. I found myself

laughing, then feeling guilty for laughing because of all of your challenges.

Best wishes for you...

Jody

Betsy <itsbetsy@...> wrote:

I was diagnosed with PA 3 years ago after having classic symptoms

half of my life. I'll be 45 next month.I was hospitalized for 2

weeks when I was 19 with stiffness and pain in my hips. At the time

my eyes were so red there were no whites to be seen and my hands

were covered in a rash, particularly around my nails. I asked if all

of this could be connected or did I just have the worst luck in the

world. They chalked it up to bad luck. Was PA not known in 1981? So

I went home with a cane and limped around for a few months. Then I

felt better so I started running. They never came up with a

conclusion and I could not help but think that if it was this bad at

19, what would it be like at 40? So I ran. I ran 5 miles a day. I'm

not sure if it was to prove that I was ok or if it was just that I

was afraid I might not be able to run some day so I was just going

to run my tail off right then. But I ran. For 3 years I ran 5 miles

a day or more. I para-sailed, and white water rafted. Any crazy

thing I could do I did. (I was a sissy chicken as a kid. I got over

it). Now I limp. I call it the " Fred Sanford " on a bad day

and " Huggy Bear " on a moderate day (the arm swing gives me

momentum...and incredible style). Most days my hands work as they

would if I were wearing wool gloves. Last year was when this disease

started getting ugly on me. I have been taking Plaquinel since my

diagnosis. I just did a month of Prednisone and have thankfully

weaned off of it. Not going there again unless I'm dying. It did not

give me that much relief. I tried Naprosen....wore off in 4 hours. I

tried Mobic...wore off in 2 hours. I took my first Ultracet today

and I got relief finally but I'm only 115 lbs so I'm cutting it in

half to keep from getting loopy. I'm loopy enough as it is.

There's a little psoriasis on my hands and wrists now but it's mild.

I'm getting an MRI done of my lower spine as soon as Medicaid

approves it. I have my kit for starting Enbrel as soon as it's

approved. Should take a few days. I'm ready. We talked about chemo

but I have Heriditary Hemachromatosis which means my liver is

compromised already so my Rheumy said chemo was not a good idea for

me. I want to ask my Hematologist about this. I was diagnosed with

the HH in 1998 and went through 8 months of weekly phlebotomies (a

pint a week) in order to get myself anemic. Now it's just CBCs every

4 months to monitor it and a few pints taken if needed. When I was

diagnosed with the HH, I believed that my joint pain and problems

had been due to the iron overload from that disease. The iron can

settle in your joints. I was relieved and thought I was going to be

ok joint-wise. But that was not the case. So I'm wondering if anyone

out there has both diseases as well? Just for the drama...ya might

as well know that I'm a single Mom of a wonderful daughter who has

high functioning autism (Aspergers Syndrome), Obessive-Compulsive

Disorder (severe), and Mood Disorder (the fancy name for Manic

Depression in children). She spent 2 weeks in the psyche ward in

Feb. and it was amazing how far she has come. She is very special. I

heard her praying one day " God...I know you must want me to do

something very wonderful for you someday or I would not have to be

going through this but too tired to go on. I'm so sorry God...I'm so

sorry " . We talked about her favorite poem...Footprints in the Sand.

For those of you not familiar with it, it's a poem about a person's

life journey. The writer complained that when he needed God the

most, he only saw one set of footprints in the sand instead of the

usual 2 sets (his and God's). God told him that was when He carried

the writer. My daughter told me she was too tired to be be carried

and she did not understand why we could not rest on our journey in

life just like we do when we are traveling. So we decided to add a

verse called Buttprints in the Sand. Sometimes you just need to sit

and watch the waves roll in. That's what I'm doing right now. We are

both learning how to sculpt our lives around our diseases without

becoming our disease. We are determined to be more. I am hoping this

group can help in that quest. I was in denial last year. I limped

and pretended I was not limping. Maybe I was just too wrapped up in

keeping well to admit I was not well myself. requires

constant care and I am diligent with her. There seems to be no time

for much else. I lost my job managing an antiques business that I

built from the ground up due to my PA. It concerns me. I have always

been so active. I am praying it will get better but trying to learn

how to live this way just in case it does not. That's my story.

I'll take all the help I can get and hope that I can be of help as

well. -Betsy

[Guest guest]

Jody....don't feel guilty for laughing. That's how I get by. Sometimes I laugh

while I cry. I don't know as much as I need to know about this disease and I'm

here to learn. Hopefully I'll be able to help others someday...help others from

what I've learned as I hobble along. Meanwhile, if I can help by making someone

laugh along with me, I'll take that. I'm a giver and this disease makes you a

taker so it feels good to be able to do something useful. I have always been a

worker...very active. So I have many adjustments to make. I'm trying. I think I

need as much help with the changes in my life as I do with learning about the

meds and health options. Keep laughing. I hear it's good medicine and there are

studies to prove it. -Betz

Jody son <jodpaulson@...> wrote: Wow, Betsy... what a story! Welcome

to the group....

You have a great sense of humor... I loved reading your email. I found myself

laughing, then feeling guilty for laughing because of all of your challenges.

Best wishes for you...

Jody

[Guest guest]

Hmmm......I wonder too..... You need to stay away from things that could over

load you with iron. Vitamin C for one. It aids in the absorption of iron. I was

mega-dosing on it (5,000 mg a day) in an effort to get myself healthy when

doctors could not figure me out. I'm won't do that again. Of course, iron

supplements might not be the best for you...not to mention eating from iron

skillets. Other than that, you should be fine. If you don't have the gene that I

have, you have to DO something to acquire the disease. So don't do it. You have

enough worries, right? You don't need to stay away from C and iron....just don't

mega dose on them or eat burgers everyday like some college students do....like

I did. There are two genes that have been identified for Hemachromatosis thus

far. And you don't have to have both of them to have the disease. Maybe when the

doctor mentioned 2 genes it sounded like he meant you need two genes to have the

disease....maybe he got it wrong or maybe

something new has been discovered since my last visit to the Hematologist. I'll

be asking about it when I go back. What I understood was that a particular one

of the genes means you have the disease no matter what you do...you got it. The

other gene (I can't remember the names of these genes but I have it written down

and filed if you want them) means you can aquire the disease if you do certain

things. The thing with Hemachromatosis is that most people who have it don't

know they have it or find out too late. When they told me they were testing me

for Hemachromatosis, I thought it was a gum disease that caused bad breath. But

then when the surgeon who took my tonsils out when I was 19 told me that I had a

cute uvula, I thought he'd done a hysterectomy instead of a tonsillectomy until

he drew me a picture which still looked a little suspicious. And now, here I am

with this PA and all of the new medical terms that comes along with it. Thank

God for the computer and you

people on this site so that I can look them up before I open my mouth and try

to discuss it with anyone. Let me know if you hear of anything else in this area

and I'll do the same. I am sorry for the loss of your father. Mine has been gone

4 years and it still hurts but I feel him with me. Do you mind my asking what

type of cancer? Was it one of the cancers associated with Hemachromatosis? Glad

to hear that you are functioning well with the Methotrexate. I am looking

forward to starting the Enbrel in hopes that I'll be walking better. It's been

hard to find work when you walk like I do. My skills are not secretarial as I

have never liked sitting still for long. I am trying to notice jobs out there

that I might be able to do that won't hurt too much or exhaust me to the point

that I cannot care for my daughter properly. I am hopeful and I won't give

up...but I sure get tired and have to rest my body and my spirit. Thank you for

your advise and information. Makes me

wonder.... -Betz

david <david@...> wrote: Hi Betsy,

Your post is interesting to me. I have PA and was diagnosed about 4

years ago. I am successfully treating with a low dosage of Methotrexate.

For me this is like a miracle drug. I went from barely walking to 99%

normal. And Zero side effects.

What interested me was your Hemochromatosis. I posted a while back to

see if anyone had a connection. My Dad had Hemochromatosis, he has

since died from cancer. I got tested for Hemochromatosis and it seems I

am a carrier, but probably do not have the disease. (I have one gene

and evidently it takes two to have the disease) I say probably, because

while the dr. says I am only a carrier, it's not conclusive that I will

not ever have the disease. Even wierder, my sister also has one gene

and is starting to show possible symptoms of PA.

I just wonder if there is some sort of connection...

Furthermore, You should be concerned becuse many drugs for treating PA,

like Methotrexate, can have detrimental effects on your liver, as

Hemochromatosis can. So, you can see why I was concerned using MTX for

4+ years.

At any rate, learn all you can. Talk frankly with your Rheumy.

Hopefully you can choose a course of treatment that will work for you.

Stay Well,

[Guest guest]

Sure thing...

Jeanette

Re: [ ] New kid on the block...anyone with

Hemachromatosis as well?

I'm going to ask my rheumy. Tylenol does nothing for me either. I did not

know I had options with this one. That's why I'm here. Thanks

Jeanette. -Betz

Jeanette French <yonder@...> wrote: Hi Betsy:

There is one item you said that concerns me. You are taking the ultracet,

and that has Tylenol in it, which can be hard on the kidneys and liver. I

wonder if you might be safer on the Ultram, same med. just no tylenol.

Tylenol has never done anything for me. Anyway, just a suggestion. Good

Luck...

Jeanette

[Guest guest]

Hi, I feel for you cause I was a runner too and when I was in high school and

continued to do so until knee problem started. I have always have skin problem

untile in my 20's I was Dx with psoriases and Dr. never connected PA with it and

it took them in my 40 to have the Dx. Now Im in 45 and still trying to help

witih pain. I hate to say this but running for so long did not help with PA

today. My mind still want to run but the body can't do it any more. I find my

Pain in bad all the time but as the year moved on I had really bad year with

pain and flare up that you can't move and them it gets better but the problem is

you don't know when it will hit you again in the wrose way.

take care hope thing will be better for you

Betsy <itsbetsy@...> wrote:

I was diagnosed with PA 3 years ago after having classic symptoms

half of my life. I'll be 45 next month.I was hospitalized for 2

weeks when I was 19 with stiffness and pain in my hips. At the time

my eyes were so red there were no whites to be seen and my hands

were covered in a rash, particularly around my nails. I asked if all

of this could be connected or did I just have the worst luck in the

world. They chalked it up to bad luck. Was PA not known in 1981? So

I went home with a cane and limped around for a few months. Then I

felt better so I started running. They never came up with a

conclusion and I could not help but think that if it was this bad at

19, what would it be like at 40? So I ran. I ran 5 miles a day. I'm

not sure if it was to prove that I was ok or if it was just that I

was afraid I might not be able to run some day so I was just going

to run my tail off right then. But I ran. For 3 years I ran 5 miles

a day or more. I para-sailed, and white water rafted. Any crazy

thing I could do I did. (I was a sissy chicken as a kid. I got over

it). Now I limp. I call it the " Fred Sanford " on a bad day

and " Huggy Bear " on a moderate day (the arm swing gives me

momentum...and incredible style). Most days my hands work as they

would if I were wearing wool gloves. Last year was when this disease

started getting ugly on me. I have been taking Plaquinel since my

diagnosis. I just did a month of Prednisone and have thankfully

weaned off of it. Not going there again unless I'm dying. It did not

give me that much relief. I tried Naprosen....wore off in 4 hours. I

tried Mobic...wore off in 2 hours. I took my first Ultracet today

and I got relief finally but I'm only 115 lbs so I'm cutting it in

half to keep from getting loopy. I'm loopy enough as it is.

There's a little psoriasis on my hands and wrists now but it's mild.

I'm getting an MRI done of my lower spine as soon as Medicaid

approves it. I have my kit for starting Enbrel as soon as it's

approved. Should take a few days. I'm ready. We talked about chemo

but I have Heriditary Hemachromatosis which means my liver is

compromised already so my Rheumy said chemo was not a good idea for

me. I want to ask my Hematologist about this. I was diagnosed with

the HH in 1998 and went through 8 months of weekly phlebotomies (a

pint a week) in order to get myself anemic. Now it's just CBCs every

4 months to monitor it and a few pints taken if needed. When I was

diagnosed with the HH, I believed that my joint pain and problems

had been due to the iron overload from that disease. The iron can

settle in your joints. I was relieved and thought I was going to be

ok joint-wise. But that was not the case. So I'm wondering if anyone

out there has both diseases as well? Just for the drama...ya might

as well know that I'm a single Mom of a wonderful daughter who has

high functioning autism (Aspergers Syndrome), Obessive-Compulsive

Disorder (severe), and Mood Disorder (the fancy name for Manic

Depression in children). She spent 2 weeks in the psyche ward in

Feb. and it was amazing how far she has come. She is very special. I

heard her praying one day " God...I know you must want me to do

something very wonderful for you someday or I would not have to be

going through this but too tired to go on. I'm so sorry God...I'm so

sorry " . We talked about her favorite poem...Footprints in the Sand.

For those of you not familiar with it, it's a poem about a person's

life journey. The writer complained that when he needed God the

most, he only saw one set of footprints in the sand instead of the

usual 2 sets (his and God's). God told him that was when He carried

the writer. My daughter told me she was too tired to be be carried

and she did not understand why we could not rest on our journey in

life just like we do when we are traveling. So we decided to add a

verse called Buttprints in the Sand. Sometimes you just need to sit

and watch the waves roll in. That's what I'm doing right now. We are

both learning how to sculpt our lives around our diseases without

becoming our disease. We are determined to be more. I am hoping this

group can help in that quest. I was in denial last year. I limped

and pretended I was not limping. Maybe I was just too wrapped up in

keeping well to admit I was not well myself. requires

constant care and I am diligent with her. There seems to be no time

for much else. I lost my job managing an antiques business that I

built from the ground up due to my PA. It concerns me. I have always

been so active. I am praying it will get better but trying to learn

how to live this way just in case it does not. That's my story.

I'll take all the help I can get and hope that I can be of help as

well. -Betsy

[Guest guest]

t....yeah....I realize now that the running was not the best thing for me

in the long run. I suppose if I'd been diagnosed properly that someone would

have suggested swimming instead. Being a Mom has helped me. I use the same

techniques I use in parenting to make myself feel better. My daughter is 11 and

has special needs so I have to stay on top of things with her and use lots of

" tricks " . One that works with her that I've used on myself is that when I have

to take something away that she enjoys, I also have to replace it with

something. She has this toy she loves right now.... a long sock with a ball in

the end of it. Someone gave it to her. I never would have! I know that she has

no sense of what is around her. She walks into people or walks between 2 people

talking (she DOES say excuse me very sweetly) but she does not " get " it with

space. She has high functioning autism. So she swings this darn ball thing

around and you'd better not be in her way. lol. I think

I'm going to have to take it away from her but I'm going to replace it with

something else that will captivate her. That's what I try to do for myself with

this PA thing. When I discover something I can't do anymore, I give myself what

I call " seven minutes of pity " and I get it out. I feel sorry for myself and get

mad and get sad.....whatever I can do in seven minutes. And then I spend the

rest of the time I WOULD have spent grieving on thinking of something I can do

instead. I can't run anymore. But sometimes I can ride a bike. I just have to

hold the handle bars with the palms of my hands. I'll find something else I can

do. I can't write....I used to comment on how I loved the feel of a pen in my

hand. But now I can type like fire. And in high school I took typing and almost

failed it. I never thought I'd love typing. Never thought I'd need it. I miss my

crafting days. I'm very creative and artistic. But there are artist out there

who are paralyzed who paint with their

teeth. They use what they HAVE. So I'm going to try and do the same thing. I

hope you are finding things that bring you joy too. It does help to have someone

say they understand. Thanks for doing that. Helps not to be alone with this. No

matter how much I am trying to cope on my own....just having others who have

been there helps me get through it. But I wish none of us had to deal with this

thing. And ok....I confess.....I have spent more than seven minutes on my pity

at times. But I am trying. You keep trying too. And lets encourage each other to

live in the sunshine and not be afraid of the night. I know what you mean by

never knowing when it's going to hit again. I've had a rough year too and then I

had this one week where I could walk a little better again and I thought I was

finally going to have a break but bam....there it was again one morning. It was

very disappointing. That must be why depression is a part of this. You'll be in

my prayers today. Thanks again

for responding. -Betz

juliet tabarez <calvincrakers@...> wrote: Hi, I feel for you cause I was

a runner too and when I was in high school and continued to do so until knee

problem started. I have always have skin problem untile in my 20's I was Dx

with psoriases and Dr. never connected PA with it and it took them in my 40 to

have the Dx. Now Im in 45 and still trying to help witih pain. I hate to say

this but running for so long did not help with PA today. My mind still want to

run but the body can't do it any more. I find my Pain in bad all the time but

as the year moved on I had really bad year with pain and flare up that you can't

move and them it gets better but the problem is you don't know when it will hit

you again in the wrose way.

take care hope thing will be better for you

[Guest guest]

hi, It seems that we have a lot in common cause I use to work with children and

had to go on disability. But, I leave with my sister here in Vancouver and she

has two young children so Im helping her out and its so difficulty when you have

to deal with PA. I know how it is to couple with a child with special needs and

how demanding they can be at times. I also paint and craft as well and I did

think that how Im I going to paint with these hands. Im still painting but I

take it slowls and I find it helpful with dealling with depression and pain.

Sometimes I have to use a brace to do it and it helps but takes longer. I think

resting and getting the sleep helps too.

hope you are well t

Re: [ ] New kid on the block...anyone with

Hemachromatosis as well?

t....yeah....I realize now that the running was not the best thing for me

in the long run. I suppose if I'd been diagnosed properly that someone would

have suggested swimming instead. Being a Mom has helped me. I use the same

techniques I use in parenting to make myself feel better. My daughter is 11 and

has special needs so I have to stay on top of things with her and use lots of

" tricks " . One that works with her that I've used on myself is that when I have

to take something away that she enjoys, I also have to replace it with

something. She has this toy she loves right now.... a long sock with a ball in

the end of it. Someone gave it to her. I never would have! I know that she has

no sense of what is around her. She walks into people or walks between 2 people

talking (she DOES say excuse me very sweetly) but she does not " get " it with

space. She has high functioning autism. So she swings this darn ball thing

around and you'd better not be in her way. lol. I think

I'm going to have to take it away from her but I'm going to replace it with

something else that will captivate her. That's what I try to do for myself with

this PA thing. When I discover something I can't do anymore, I give myself what

I call " seven minutes of pity " and I get it out. I feel sorry for myself and get

mad and get sad.....whatever I can do in seven minutes. And then I spend the

rest of the time I WOULD have spent grieving on thinking of something I can do

instead. I can't run anymore. But sometimes I can ride a bike. I just have to

hold the handle bars with the palms of my hands. I'll find something else I can

do. I can't write....I used to comment on how I loved the feel of a pen in my

hand. But now I can type like fire. And in high school I took typing and almost

failed it. I never thought I'd love typing. Never thought I'd need it. I miss my

crafting days. I'm very creative and artistic. But there are artist out there

who are paralyzed who paint with their

teeth. They use what they HAVE. So I'm going to try and do the same thing. I

hope you are finding things that bring you joy too. It does help to have someone

say they understand. Thanks for doing that. Helps not to be alone with this. No

matter how much I am trying to cope on my own....just having others who have

been there helps me get through it. But I wish none of us had to deal with this

thing. And ok....I confess.....I have spent more than seven minutes on my pity

at times. But I am trying. You keep trying too. And lets encourage each other to

live in the sunshine and not be afraid of the night. I know what you mean by

never knowing when it's going to hit again. I've had a rough year too and then I

had this one week where I could walk a little better again and I thought I was

finally going to have a break but bam....there it was again one morning. It was

very disappointing. That must be why depression is a part of this. You'll be in

my prayers today. Thanks again

for responding. -Betz

[Guest guest]

Hi Betz,

No, I had tried mega dosing vitamin C several years ago, but it

didn't really do much, so I stopped. As far as the burgers, I try to

moderate what I eat, but with the MTX, I can't drink, I don't smoke,

so I have very little as a vice, so I tend to probably eat a bit too

well. Luckily, I am able to move very well and go to gym 2-3 times a

week to make up for a little indulgence.

As far a my Dad's cancer, most likely not related to Hemochromatosis.

He started with cancer of his paratoid gland, created a large lump

under one ear into the neck. It was operated on and removed after 2

quick successive operations . Unfortunately the cancer was agressive,

metastisized and rapidly attacked his liver. His liver function

became virtually non existent. He was 80, the 2 previous operations

for the paratoid gland left him rather weak and quite miserable, so

he decided to have no further treatment.

As far as the Gene info, I'd love to know what you know. I had to

pressure my Dr and HMO to do the testing. The info I got back was

not detailed.

Stay Well,

[Guest guest]

, I dug up my Hemachromatosis lab work. The major gene is called C282Y

Homozygous A. The secondary gene is called H63D. The major one was detected in

me and the secondary one was not. In the lab report this was written :

" Hereditary Hemachormatosis is a common genetic disorder involving excess iron

deposition in organs and can lead to high morbididty and mortality if untreated.

The major mutation in the HFE gene is the C828Y mutation which in it's

homozygous state accounts for over 90% of clinically diagnosed hemochromatosis

cases. Heterozygotes for C282Y carry an increased hemochromatosis risk over the

normal genotype. A second mutation H63D can increase the risk for

hemachromatosis for those individuals that are heterozygous for the C282Y

mutation. The H63D mutation is very common in the general population

(approximately 1/5) and by itself, appears to have only a minor role (if any) in

iron overload disease. Some patients (about 5%) have iron overload disease, but

lack the specific genetic mutations tested. " The lab is AML, American Medical

Laboratories, Inc. in Chantilly Virginian. I don't know if any of this would

help you but it's good to be informed. Hope all is well with you today. -Betz

david <david@...> wrote: Hi Betz,

No, I had tried mega dosing vitamin C several years ago, but it

didn't really do much, so I stopped. As far as the burgers, I try to

moderate what I eat, but with the MTX, I can't drink, I don't smoke,

so I have very little as a vice, so I tend to probably eat a bit too

well. Luckily, I am able to move very well and go to gym 2-3 times a

week to make up for a little indulgence.

As far a my Dad's cancer, most likely not related to Hemochromatosis.

He started with cancer of his paratoid gland, created a large lump

under one ear into the neck. It was operated on and removed after 2

quick successive operations . Unfortunately the cancer was agressive,

metastisized and rapidly attacked his liver. His liver function

became virtually non existent. He was 80, the 2 previous operations

for the paratoid gland left him rather weak and quite miserable, so

he decided to have no further treatment.

As far as the Gene info, I'd love to know what you know. I had to

pressure my Dr and HMO to do the testing. The info I got back was

not detailed.

Stay Well,

[Guest guest]

t...it's great to run into someone who knows what a double whammy I have in

life. But I'm sure you know what an incredible blessing these kids are. My

daughter made me tired long before the arthritis did but she also gives me

strength to go on. If she can do it, so can I. She is my hero. Because of her, I

know that the PA will not get me. Sometimes we lean on each other...propping

ourselves up against the other so that we don't fall down when we both get tired

from life. We understand each other. As far as the painting goes, I am changing

my style in art as I am changing other things in my life. It is only natural for

that to be reflected in the art. My strokes are bigger now....less

detailed....and I like it. I keep a journal of funny, sweet, and wise things

that says. When she was little and I was a stay at home Mom, still

married, I used to write my entries so neatly. Sometimes I'd glue little pressed

flowers or leaves or other interesting things onto the

pages. Then as she got older and more active and I was just trying to keep up

with her, the entries got jumbled and sloppy....sometimes written diagonally

across the page! I had always planned on going back into the journal and

rewriting it so that it would be " pretty " and clever. But I've mellowed and

relaxed about alot of things as I've raised . And I decided that I would

leave it all just the way it was. It properly expresses how things are with her.

I think the way it's written tells the story well. So I'm doing the same with my

painting. Letting it be what it is, not what it was. And you? How are you

adjusting and adapting? I have a prescription for braces for my wrists but have

not gotten them yet. Low on cash for the rest of the month. Does it really help?

And on the rest part. I know that it helps and I try to get as much as I

can. I hate napping during the day though...I never really wake up after wards.

But sometimes if I sit on the sofa, that's all

she wrote. I nod off like an old man. lol. I have to heed my own advise and do

what I tell my daughter..... " listen to your body " and rest when I need to. Hope

your day is going well. -Betz

juliet tabarez <calvincrakers@...> wrote: hi, It seems that we have a

lot in common cause I use to work with children and had to go on disability.

But, I leave with my sister here in Vancouver and she has two young children so

Im helping her out and its so difficulty when you have to deal with PA. I know

how it is to couple with a child with special needs and how demanding they can

be at times. I also paint and craft as well and I did think that how Im I going

to paint with these hands. Im still painting but I take it slowls and I find it

helpful with dealling with depression and pain. Sometimes I have to use a brace

to do it and it helps but takes longer. I think resting and getting the sleep

helps too.

hope you are well t

[Guest guest]

Betsy,

I hope your brace will help you but it take time to get use to it. Not easy

using it cause it's hard to move around with it. I do some scrapping and

journelling my sisters children so that fun to do. Having children around helps

with life even though they can be a hand full.

take care juliet

Re: [ ] New kid on the block...anyone with

Hemachromatosis as well?

t...it's great to run into someone who knows what a double whammy I have in

life. But I'm sure you know what an incredible blessing these kids are. My

daughter made me tired long before the arthritis did but she also gives me

strength to go on. If she can do it, so can I. She is my hero. Because of her, I

know that the PA will not get me. Sometimes we lean on each other...propping

ourselves up against the other so that we don't fall down when we both get tired

from life. We understand each other. As far as the painting goes, I am changing

my style in art as I am changing other things in my life. It is only natural for

that to be reflected in the art. My strokes are bigger now....less

detailed....and I like it. I keep a journal of funny, sweet, and wise things

that says. When she was little and I was a stay at home Mom, still

married, I used to write my entries so neatly. Sometimes I'd glue little pressed

flowers or leaves or other interesting things onto the

pages. Then as she got older and more active and I was just trying to keep up

with her, the entries got jumbled and sloppy....sometimes written diagonally

across the page! I had always planned on going back into the journal and

rewriting it so that it would be " pretty " and clever. But I've mellowed and

relaxed about alot of things as I've raised . And I decided that I would

leave it all just the way it was. It properly expresses how things are with her.

I think the way it's written tells the story well. So I'm doing the same with my

painting. Letting it be what it is, not what it was. And you? How are you

adjusting and adapting? I have a prescription for braces for my wrists but have

not gotten them yet. Low on cash for the rest of the month. Does it really help?

And on the rest part. I know that it helps and I try to get as much as I

can. I hate napping during the day though...I never really wake up after wards.

But sometimes if I sit on the sofa, that's all

she wrote. I nod off like an old man. lol. I have to heed my own advise and do

what I tell my daughter..... " listen to your body " and rest when I need to. Hope

your day is going well. -Betz

[Guest guest]

Thanks SO MUCH! Betsy.

Stay Well,