Need more answers...

[Guest guest]

First off, thank you all for the responses about my joint pain and

fatigue. As I read more and more of these posts, I see fatigue is a

big problem for all. I thought I knew a lot about this disease - did

a lot of research on it when diagnosed. So I do know quite a lot

about the disease, but not much on what is normal on a daily basis,

as far as symptoms and side effects. I can't seem to get answers

from docs on it either. I have fatigue all day, joint and muscle

pain too. I get these waves of nausea off and on all day. I have

the itching. My intelligience seems to be inferior in contrast to

what it was before AIH. In short, I just never feel well. Well,

that is a lie. On a day in March - March 18th to be exact - I woke

up feeling, well, great. No foggy head, no pain, lots of energy. I

felt so good that day, I actually forgot I was sick for about the

first hour being awake. Then when I did remember, I was excited

because I thought I had turned some corner. Not. Since that day my

pain has progressed, especially in joints of my legs, to a point that

I can do very little now on my feet. I have a cane and wheelchair,

but I dont want to get back into them again. When I used them before

it was because of serious flare ups, but I wanted to be able to stay

included with my family in there busy life. Now to use them seems

like some sort of progression to getting sicker. But as I said I

never feel well. Does any of you feel like this all the time? And

can any one tell me if it will ever get better?

I need to be better. I don't have time for this. I have one

daughter who is a junior in highschool, and is very involved in

school - which in turn requires me to be too. My older daughter is

in college, and is getting married. I have dreamed since the day she

was born about 'making her wedding' myself. Her dress, the

bridesmaids dresses, the headpieces, the cake, the flowers, the

food. I have worked hard through out her life to learn how to do all

of these things well. But now, sadly, that list will be much

shorter. I am a perfectionist, and find it very difficult to

just 'accept' what this disease is doing to my life. Does any one

have some words of wisdom, or comfort, or hope to help me. It felt

so great to find this group, I actually cried when I first got on

here from pure elation over suddenly not feeling alone any more.

Lastly, I live in the Vancouver WA/ Portland OR area. Does any one

live near me or know of a group here local to me that I could go to

meetings? I have been seriously considering asking my doc how many

pt's he has with this disease and if he would support my starting a

group. But if any one knows of one or how I even find out if there

is one, I welcome the information.

Thank you all for your time and energy it takes to respond, I know

all to well the need to not waste too much energy on anything but

life and family.

Sincerely

Carole

[Guest guest]

Carole, I have had very similar problems with this stuff. First of all, the pain and stiffness is sometimes overwhelming. However, if we give in to this disease, it will overtake us, and that is not what any of us want to do!

For me, my GI told me to see my Rheumatologist. She said that perhaps he could help with the pain control. It helped. The doctor perscribed Plaquenil. It has helped a lot with the pain and stiffness in my joints. It is helping with the swelling in my fingers too and that is nice. But the very best thing was that it is allowing me to sleep all night long...something that I have not been able to do for years. Every time I moved, the stiffness and pain woke me up. Now, however, I can actually sleep 6 hours straight. It is just wonderful.

With sleep, work is much easier. I can tackle the every day problems with much less stress. And, I have much more energy to get through the day. This is something that I have not been able to do for years. Now, I am walking nearly all day, and sitting is a thing of the past. It really IS wonderful!

Another thing that I have started, too, is taking CoQ10. It seems to also increase my energy level. Maybe it is in my imagination, but it doesn't seem to be. The energy is increased.

Hopefully, Carole, things will work out for you. It is frustrating to have such young kids and have their future lives to help plan for. We just had a beautiful wedding for our daughter 41 days ago. Dreams DO come true, for it was a wonderful day. Good luck with the plans.

Please ask your doctor for something for the stiffness and pain. There must be something out there for you.

Debby

[ ] Need more answers...

First off, thank you all for the responses about my joint pain and fatigue. As I read more and more of these posts, I see fatigue is a big problem for all. I thought I knew a lot about this disease - did a lot of research on it when diagnosed. So I do know quite a lot about the disease, but not much on what is normal on a daily basis, as far as symptoms and side effects. I can't seem to get answers from docs on it either. I have fatigue all day, joint and muscle pain too. I get these waves of nausea off and on all day. I have the itching. My intelligience seems to be inferior in contrast to what it was before AIH. In short, I just never feel well. Well, that is a lie. On a day in March - March 18th to be exact - I woke up feeling, well, great. No foggy head, no pain, lots of energy. I felt so good that day, I actually forgot I was sick for about the first hour being awake. Then when I did remember, I was excited because I thought I had turned some corner. Not. Since that day my pain has progressed, especially in joints of my legs, to a point that I can do very little now on my feet. I have a cane and wheelchair, but I dont want to get back into them again. When I used them before it was because of serious flare ups, but I wanted to be able to stay included with my family in there busy life. Now to use them seems like some sort of progression to getting sicker. But as I said I never feel well. Does any of you feel like this all the time? And can any one tell me if it will ever get better?I need to be better. I don't have time for this. I have one daughter who is a junior in highschool, and is very involved in school - which in turn requires me to be too. My older daughter is in college, and is getting married. I have dreamed since the day she was born about 'making her wedding' myself. Her dress, the bridesmaids dresses, the headpieces, the cake, the flowers, the food. I have worked hard through out her life to learn how to do all of these things well. But now, sadly, that list will be much shorter. I am a perfectionist, and find it very difficult to just 'accept' what this disease is doing to my life. Does any one have some words of wisdom, or comfort, or hope to help me. It felt so great to find this group, I actually cried when I first got on here from pure elation over suddenly not feeling alone any more.Lastly, I live in the Vancouver WA/ Portland OR area. Does any one live near me or know of a group here local to me that I could go to meetings? I have been seriously considering asking my doc how many pt's he has with this disease and if he would support my starting a group. But if any one knows of one or how I even find out if there is one, I welcome the information.Thank you all for your time and energy it takes to respond, I know all to well the need to not waste too much energy on anything but life and family.SincerelyCarole

[Guest guest]

Hi Carole,

I live near Newberg, Oregon, so you are not far from me. There are about a half a dozen people from the Pacific Northwest. I am sorry to hear of your struggles with your health. I was diagnosed with AIH in March and also have Autoimmune Cholangitis and M.S. Our oldest, a daughter is a senior in high school, and our son is a sophomore.

Carole, when were you diagnosed? Could you tell me more about the meds you are taking? I think most of us would say AIH is very individual in the way if affects each person. I think though we all struggle with the many myriad of symtoms that go with the disease. Since I am newly diagnosed, I am trying to find out what to expect. I think it has been so much better for me mentally having this group. When I was diagnosed with M.S. I didn't have very many people who understood, having people who know what you are going through has made a huge difference. Carole, it would be nice to get all the people from the Northwest together sometime.

I am sorry I am not a lot of help, I am still so new to this illness, I am learning though to be gentle with myself and give myself permission to take things slower, but that doesn't mean I will let the disease control every aspect of my life. I try to plan each day still around our family but instead of trying to do everything, I am learning to let others help, and I can honestly say that has been good for me to learn to do, and it has allowed my family to not value "Mom" less but see her as a part of the team, not "doing it all." I have more time to listen to my teenagers, they love that, I think of it as "early retirement." I always thought it would be neat to retire young!! Does any of this make sense, I guess what I am saying is I can choose the important things not the urgent, and that has turned out to be a blessing in my life.

I hope you can find comfort in knowing you are not alone and there are so many people here who are very brave and are living their lives to the fullest they can, take care and I hope you will write again.

Love, Ruth

toots_k wrote:

First off, thank you all for the responses about my joint pain and fatigue. As I read more and more of these posts, I see fatigue is a big problem for all. I thought I knew a lot about this disease - did a lot of research on it when diagnosed. So I do know quite a lot about the disease, but not much on what is normal on a daily basis, as far as symptoms and side effects. I can't seem to get answers from docs on it either. I have fatigue all day, joint and muscle pain too. I get these waves of nausea off and on all day. I have the itching. My intelligience seems to be inferior in contrast to what it was before AIH. In short, I just never feel well. Well, that is a lie. On a day in March - March 18th to be exact - I woke up feeling, well, great. No foggy head, no pain, lots of energy. I felt so good that day, I actually forgot I was sick for about the first hour being awake. Then when I did remember, I was excited because I thought I had turned some corner. Not. Since that day my pain has progressed, especially in joints of my legs, to a point that I can do very little now on my feet. I have a cane and wheelchair, but I dont want to get back into them again. When I used them before it was because of serious flare ups, but I wanted to be able to stay included with my family in there busy life. Now to use them seems like some sort of progression to getting sicker. But as I said I never feel well. Does any of you feel like this all the time? And can any one tell me if it will ever get better?I need to be better. I don't have time for this. I have one daughter who is a junior in highschool, and is very involved in school - which in turn requires me to be too. My older daughter is in college, and is getting married. I have dreamed since the day she was born about 'making her wedding' myself. Her dress, the bridesmaids dresses, the headpieces, the cake, the flowers, the food. I have worked hard through out her life to learn how to do all of these things well. But now, sadly, that list will be much shorter. I am a perfectionist, and find it very difficult to just 'accept' what this disease is doing to my life. Does any one have some words of wisdom, or comfort, or hope to help me. It felt so great to find this group, I actually cried when I first got on here from pure elation over suddenly not feeling alone any more.Lastly, I live in the Vancouver WA/ Portland OR area. Does any one live near me or know of a group here local to me that I could go to meetings? I have been seriously considering asking my doc how many pt's he has with this disease and if he would support my starting a group. But if any one knows of one or how I even find out if there is one, I welcome the information.Thank you all for your time and energy it takes to respond, I know all to well the need to not waste too much energy on anything but life and family.SincerelyCarole

[Guest guest]

Debby, I am so happy you are finally able to sleep, what a wonderful piece of news!! I am so happy you are getting help from your doctor. I know you have suffered a lot of pain, and to be able to sleep is so important. I seem to go in cycles, I have been sleeping more lately, every once in awhile the itching will wake me up. Since the doctor gave me pain medication I am doing so much better. I just wanted to say how happy I was to hear that you are able to sleep and you are experiencing more energy, that is so encouraging!!!

Ruth

tdcc wrote:

Carole, I have had very similar problems with this stuff. First of all, the pain and stiffness is sometimes overwhelming. However, if we give in to this disease, it will overtake us, and that is not what any of us want to do!

For me, my GI told me to see my Rheumatologist. She said that perhaps he could help with the pain control. It helped. The doctor perscribed Plaquenil. It has helped a lot with the pain and stiffness in my joints. It is helping with the swelling in my fingers too and that is nice. But the very best thing was that it is allowing me to sleep all night long...something that I have not been able to do for years. Every time I moved, the stiffness and pain woke me up. Now, however, I can actually sleep 6 hours straight. It is just wonderful.

With sleep, work is much easier. I can tackle the every day problems with much less stress. And, I have much more energy to get through the day. This is something that I have not been able to do for years. Now, I am walking nearly all day, and sitting is a thing of the past. It really IS wonderful!

Another thing that I have started, too, is taking CoQ10. It seems to also increase my energy level. Maybe it is in my imagination, but it doesn't seem to be. The energy is increased.

Hopefully, Carole, things will work out for you. It is frustrating to have such young kids and have their future lives to help plan for. We just had a beautiful wedding for our daughter 41 days ago. Dreams DO come true, for it was a wonderful day. Good luck with the plans.

Please ask your doctor for something for the stiffness and pain. There must be something out there for you.

Debby

[ ] Need more answers...

First off, thank you all for the responses about my joint pain and fatigue. As I read more and more of these posts, I see fatigue is a big problem for all. I thought I knew a lot about this disease - did a lot of research on it when diagnosed. So I do know quite a lot about the disease, but not much on what is normal on a daily basis, as far as symptoms and side effects. I can't seem to get answers from docs on it either. I have fatigue all day, joint and muscle pain too. I get these waves of nausea off and on all day. I have the itching. My intelligience seems to be inferior in contrast to what it was before AIH. In short, I just never feel well. Well, that is a lie. On a day in March - March 18th to be exact - I woke up feeling, well, great. No foggy head, no pain, lots of energy. I felt so good that day, I actually forgot I was sick for about the first hour being awake. Then when I did remember, I was excited because I thought I had turned some corner. Not. Since that day my pain has progressed, especially in joints of my legs, to a point that I can do very little now on my feet. I have a cane and wheelchair, but I dont want to get back into them again. When I used them before it was because of serious flare ups, but I wanted to be able to stay included with my family in there busy life. Now to use them seems like some sort of progression to getting sicker. But as I said I never feel well. Does any of you feel like this all the time? And can any one tell me if it will ever get better?I need to be better. I don't have time for this. I have one daughter who is a junior in highschool, and is very involved in school - which in turn requires me to be too. My older daughter is in college, and is getting married. I have dreamed since the day she was born about 'making her wedding' myself. Her dress, the bridesmaids dresses, the headpieces, the cake, the flowers, the food. I have worked hard through out her life to learn how to do all of these things well. But now, sadly, that list will be much shorter. I am a perfectionist, and find it very difficult to just 'accept' what this disease is doing to my life. Does any one have some words of wisdom, or comfort, or hope to help me. It felt so great to find this group, I actually cried when I first got on here from pure elation over suddenly not feeling alone any more.Lastly, I live in the Vancouver WA/ Portland OR area. Does any one live near me or know of a group here local to me that I could go to meetings? I have been seriously considering asking my doc how many pt's he has with this disease and if he would support my starting a group. But if any one knows of one or how I even find out if there is one, I welcome the information.Thank you all for your time and energy it takes to respond, I know all to well the need to not waste too much energy on anything but life and family.SincerelyCarole

[Guest guest]

carole ... i too feel the same .. i feel useless with the wheelchair .. at times i feel a burden to my family ...i have a son in h.s. and my daughter just graduated college .. she is going for her massage state license next week...my knees are swollen and look like bowling balls ...i went to dr yesterday ....i have a serious eye infection and it has to be cleared up by monday or its off to an opthalmologist.....she will readrees my legs friday if my eyes are better ... i have asked my hepatologist about other aihers in my area ...he says there are plenty but he hasnt told me anyone yet... i also have asked several pharmacists...my best help has been sideline reading here...depression has set in real bad so with the help of reading from tony , ruth , harper and tys mom i have been absorbing their posts as if they were here with me ... good luck to you ......karen/s.c

[Guest guest]

I know about the depression setting in. It stinks. I think myself,

I am having a tough time with denial, or refusal to accept my

disease. I am at a point of such anger right now, I really don't

know how to deal with it. I too have eye prob's from steroid use. I

have cataracts, glaucoma. I was just diagnosed with osteoperosis,

but told I can't take the scrips for it. Not that I wanted to take

more pills. As it is, I take nexium and antinausients to keep what I

all ready take down. It is all so over whelming. I hate going to

the doctor anymore. When ever I go, they diagnose something knew. I

too feel a burden on my family. They say I am not, but I know what

it is doing to them. I just don't know what I am supposed to feel,

what everyone expects of me any more, you know what I mean? Just all

drives me crazy. Good luck to you.

Carole

-- In @y..., kikishrimp@a... wrote:

> carole ... i too feel the same .. i feel useless with the

wheelchair .. at

> times i feel a burden to my family ...i have a son in h.s. and my

daughter

> just graduated college .. she is going for her massage state

license next

> week...my knees are swollen and look like bowling balls ...i went

to dr

> yesterday ....i have a serious eye infection and it has to be

cleared up by

> monday or its off to an opthalmologist.....she will readrees my

legs friday

> if my eyes are better ... i have asked my hepatologist about other

aihers in

> my area ...he says there are plenty but he hasnt told me anyone

yet... i also

> have asked several pharmacists...my best help has been sideline

reading

> here...depression has set in real bad so with the help of reading

from tony

> , ruth , harper and tys mom i have been absorbing their posts as

if they

> were here with me ... good luck to you ......karen/s.c

[Guest guest]

Carole... what other people expect of you is none of your business...

What do YOU expect of you

Depression is hard to fight but dwelling on things makes it tougher....

not only should you try to help others but treat yourself better . Find

some stuff to laugh at, pamper yourself, don't imagine things that

haven't happened yet ... 'cause they never turn out te way you think

they will. Everything will occur as it should.

As an aside ... I am of the opinion that doctors tend to over medicate

and many of us take more pills than we really need and it in turn tends

to add to our depression...just my opinion..

Hang in there kiddo, we are all rooting for you !

You am in my prayers.

love, peace and serenity....

jerry

[Guest guest]

Hi! I was diagnosed in October of 99. After several years of

abnormal LFT's and symptoms. They finally culminated in to liver

failure sometime in September that year. They finally hospitalized

me here in Vancouver at SW Washington Medical Center and first

diagnosed me with hemochromotosis. When treating me for that didn't

work and my LFT's went up to 9000, they decided to transfer me to

OHSU. When I got there they had an immediate diagnosis. And with

immediate medicating, my numbers were cut almost in half by the next

day. But they were unable to biopsy the liver because of low

platelets right away. Received vitamin K shot for 5 days and was

then able to get biopsy. I started out at 60 mgs prednisone, 100 mgs

immuran, 300 mgs actigall. Was taken off actigall 3 mos later, along

with decrease to 40 mgs of prednisone. Over the course of the next

year was tapered off prednisone and immuran. When completely off,

went into liver failure again within about 6 weeks - LFT's back up

into the thousands. REpeated again for about another year with same

results - liver failure - but within about 4 weeks this time. WEnt

back on prednisone and immuran again in April of 2001. Have been off

prednisone since November 2001, but still on 75 mgs immuran. Doctor

said his original goal of course was remission, now it is just

control. But he says the disease is 'just' in control, since I have

all symptoms of disease every morning when I wake, and it takes about

4 hours after all my meds before I can start moving around. And even

then only about 50% of the time does that mean a decrease in pain to

a tolerable level. Pain just stops my life, more than any other

symptom. I just don't know what to do about it. And in between

times with my hepatologist, I am in and out of ER and my G.P.'s

office for acute pain, kidney infections, sinus infection,

gastrointestinal infections - just battled e-coli severely just two

weeks before my daughters graduation. I actually learned how to

sleep while sitting on the toilet! Hope I never get that again. So

that is my story in short. Now, where do you go to the docs,

Portland? Who do you see? I am at the Oregon clinic now, my doc

transferred to there from OHSU last year. I won't even get started

on how they are ticking me off lately. Love to hear from you, and

how you found out about your disease.

CArole

-- In @y..., " hrby97111@y... " <hrby97111@y...> wrote:

>

> Hi Carole,

> I live near Newberg, Oregon, so you are not far from me.

There are about a half a dozen people from the Pacific Northwest. I

am sorry to hear of your struggles with your health. I was diagnosed

with AIH in March and also have Autoimmune Cholangitis and M.S. Our

oldest, a daughter is a senior in high school, and our son is a

sophomore.

> Carole, when were you diagnosed? Could you tell me more about

the meds you are taking? I think most of us would say AIH is very

individual in the way if affects each person. I think though we all

struggle with the many myriad of symtoms that go with the disease.

Since I am newly diagnosed, I am trying to find out what to expect.

I think it has been so much better for me mentally having this

group. When I was diagnosed with M.S. I didn't have very many

people who understood, having people who know what you are going

through has made a huge difference. Carole, it would be nice to get

all the people from the Northwest together sometime.

> I am sorry I am not a lot of help, I am still so new to this

illness, I am learning though to be gentle with myself and give

myself permission to take things slower, but that doesn't mean I will

let the disease control every aspect of my life. I try to plan each

day still around our family but instead of trying to do everything, I

am learning to let others help, and I can honestly say that has been

good for me to learn to do, and it has allowed my family to not

value " Mom " less but see her as a part of the team, not " doing it

all. " I have more time to listen to my teenagers, they love that, I

think of it as " early retirement. " I always thought it would be neat

to retire young!! Does any of this make sense, I guess what I am

saying is I can choose the important things not the urgent, and that

has turned out to be a blessing in my life.

> I hope you can find comfort in knowing you are not alone and there

are so many people here who are very brave and are living their lives

to the fullest they can, take care and I hope you will write again.

> Love, Ruth

> toots_k wrote:First off, thank you all for the responses about my

joint pain and

> fatigue. As I read more and more of these posts, I see fatigue is

a

> big problem for all. I thought I knew a lot about this disease -

did

> a lot of research on it when diagnosed. So I do know quite a lot

> about the disease, but not much on what is normal on a daily basis,

> as far as symptoms and side effects. I can't seem to get answers

> from docs on it either. I have fatigue all day, joint and muscle

> pain too. I get these waves of nausea off and on all day. I have

> the itching. My intelligience seems to be inferior in contrast to

> what it was before AIH. In short, I just never feel well. Well,

> that is a lie. On a day in March - March 18th to be exact - I woke

> up feeling, well, great. No foggy head, no pain, lots of energy.

I

> felt so good that day, I actually forgot I was sick for about the

> first hour being awake. Then when I did remember, I was excited

> because I thought I had turned some corner. Not. Since that day

my

> pain has progressed, especially in joints of my legs, to a point

that

> I can do very little now on my feet. I have a cane and wheelchair,

> but I dont want to get back into them again. When I used them

before

> it was because of serious flare ups, but I wanted to be able to

stay

> included with my family in there busy life. Now to use them seems

> like some sort of progression to getting sicker. But as I said I

> never feel well. Does any of you feel like this all the time? And

> can any one tell me if it will ever get better?

>

> I need to be better. I don't have time for this. I have one

> daughter who is a junior in highschool, and is very involved in

> school - which in turn requires me to be too. My older daughter is

> in college, and is getting married. I have dreamed since the day

she

> was born about 'making her wedding' myself. Her dress, the

> bridesmaids dresses, the headpieces, the cake, the flowers, the

> food. I have worked hard through out her life to learn how to do

all

> of these things well. But now, sadly, that list will be much

> shorter. I am a perfectionist, and find it very difficult to

> just 'accept' what this disease is doing to my life. Does any one

> have some words of wisdom, or comfort, or hope to help me. It felt

> so great to find this group, I actually cried when I first got on

> here from pure elation over suddenly not feeling alone any more.

>

> Lastly, I live in the Vancouver WA/ Portland OR area. Does any one

> live near me or know of a group here local to me that I could go to

> meetings? I have been seriously considering asking my doc how many

> pt's he has with this disease and if he would support my starting a

> group. But if any one knows of one or how I even find out if there

> is one, I welcome the information.

>

> Thank you all for your time and energy it takes to respond, I know

> all to well the need to not waste too much energy on anything but

> life and family.

>

> Sincerely

>

> Carole

>

>

>