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Hi Vicky,

Thousands of miles away, I feel for you, too. It sounds like you had a

pretty rough morning. We know what that's like. It's hard to understand

how someone can be feeling and doing so well and then, without rhyme or

reason, suddenly have the pain and stiffness and fatigue return. Another

one of the elusive mysteries of arthritis. I used to always look for a

cause, to try to figure out what on earth happened yesterday when

everything seemed just fine ... that makes today so much harder.

Sometimes it doesn't seem like there's any good reason. When diet,

exercise, weather, meds, and everything else seems to have remained

stable the disease still acts up, on it's own accord. I'm glad your Mom

is there for you when you need her. It sounds like you're very close. I

hope, too, that as the day progresses you begin to feel better.

Take care,

Georgina

vmockingbirdh@... wrote:

>

> Our illness is so cruel it gives you long periods of healthyness and overall

> quite a bit of energy and then it just snaps it away from you just when youve

> gotten use to feeling better. Ive been feeling good for ages and Mum was

> about to ring my Dr to ask about reducing my steroids when out of the blue I

> start to hurt. When I stand up I get a pain in my head and when I sit down I

> feel all the aches 10x worse. You should have seen me this morning sitting on

> the settee with a hotwater bottle on each arm and a heatpad around my neck

> ,and then my temperature changes and I get to hot so all that has to go. This

> must be the most difficult illness to bring fast relief too and to get your

> head round.

> Vicky

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Our illness is so cruel it gives you long periods of healthyness and overall

quite a bit of energy and then it just snaps it away from you just when youve

gotten use to feeling better. Ive been feeling good for ages and Mum was

about to ring my Dr to ask about reducing my steroids when out of the blue I

start to hurt. When I stand up I get a pain in my head and when I sit down I

feel all the aches 10x worse. You should have seen me this morning sitting on

the settee with a hotwater bottle on each arm and a heatpad around my neck

,and then my temperature changes and I get to hot so all that has to go. This

must be the most difficult illness to bring fast relief too and to get your

head round.

Vicky

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Thanks Georgina,

I'm feeling a bit better today but have a really bad throat. My friend has

just returned from a holiday in New Jersey and Im feeling pretty jealous as

since we live in England its rare to go all that way and so far I had always

been the one to tell her of my experiences there but now she has shared

everything and it doesnt seem the same. That sounds really sad of me but its

how I feel.

Vicky

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Vicky,

I can empathize with you. While I have not felt that way lately, this week

has been a true PMS week at my house. Three teenage girls. Holy cow! Gotta

laugh, or else you'll cry. Hang in there.

Christy

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Hi Vicky & Georgina, et al:

I have to agree, this is a cruel and inexplicable disease. Mickey, too,

after a summer off prednisone, flared overnight a week ago to full blown

systemic symptoms again. Fevers, rash, swollen joints, unable to walk, no

appetite, sleeping all the time... it was quite a blow, we'd been so hopeful

and excited about being off prednisone for the first time since this all

started. Her regular bloodwork results alarmed her docs, so we made a quick

trip down to Toronto to see them, and she is back on prednisone, 8 mg twice

per day for now, but we will be trying for a quick taper. Once again, I have

seen what a miracle drug it is (hate it though we do) because after a week

of not walking, barely moving and lots of pain, Mickey is now hopping and

popping about again, cheery & energetic.

This list, keeping in touch with everyone, hearing the similar stories, good

and bad, the ups and downs everyone shares, somehow makes the pain of this a

little easier to bear. I'm so glad you're all out there.

Lynn

From: Georgina <gmckin@...>

Reply-

Date: Tue, 14 Aug 2001 09:22:05 +0000

Subject: Re: Feeling sorry for myself

Hi Vicky,

Thousands of miles away, I feel for you, too. It sounds like you had a

pretty rough morning. We know what that's like. It's hard to understand

how someone can be feeling and doing so well and then, without rhyme or

reason, suddenly have the pain and stiffness and fatigue return. Another

one of the elusive mysteries of arthritis. I used to always look for a

cause, to try to figure out what on earth happened yesterday when

everything seemed just fine ... that makes today so much harder.

Sometimes it doesn't seem like there's any good reason. When diet,

exercise, weather, meds, and everything else seems to have remained

stable the disease still acts up, on it's own accord. I'm glad your Mom

is there for you when you need her. It sounds like you're very close. I

hope, too, that as the day progresses you begin to feel better.

Take care,

Georgina

vmockingbirdh@... wrote:

>

> Our illness is so cruel it gives you long periods of healthyness and overall

> quite a bit of energy and then it just snaps it away from you just when youve

> gotten use to feeling better. Ive been feeling good for ages and Mum was

> about to ring my Dr to ask about reducing my steroids when out of the blue I

> start to hurt. When I stand up I get a pain in my head and when I sit down I

> feel all the aches 10x worse. You should have seen me this morning sitting on

> the settee with a hotwater bottle on each arm and a heatpad around my neck

> ,and then my temperature changes and I get to hot so all that has to go. This

> must be the most difficult illness to bring fast relief too and to get your

> head round.

> Vicky

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  • 2 months later...

In a message dated 11/8/01 8:59:52 AM Pacific Standard Time, jeanette_cuk@... writes:

Hy I have had a awful week I just want everything to stop. It started when I fell breaking a couple of ribs then my specialist told me I did have cirrhosis after all this time. Then yesterday I went to see my optician she told me to see my doctor ASAP so I went today and after a long examination he told me I have had a small stoke my blood presure was high 180 over 104. Are things ever going to get better ? I feel so tired trying to be strong and be there for my family all the time somewere along the line I have forgot about myself and have refused to believe I have been ill. My family mean the world to me but I need them now am I being selfish please let me know.

Jeanette UK

PS the doctor has put me on medication for my blood preasure and is sending me to another specialist. That will make 4 of them I don't know were I am going to find the time to see them all.

I'm so sorry you're having such a bad time, Jeanette. As a reminder to us all, hypertension (high blood pressure) is a very common and very serious side effect of the drugs we take for AIH, and we must take countermeasures to guard against it. The same goes for diabetes, glaucoma, cataracts, and osteoporosis.

You're not remotely being selfish. If you don't take care of yourself, first of all, you won't be able to take care of others. Think of the instructions you're given on airplanes -- if oxygen masks are needed, put on your own mask before you try to assist others, even children, to be sure you'll be alert to help them.

As for finding time to get to all the specialists, now may be the time to insist on help.

Harper

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Jeanette:

Hi, I do not think you are being selfish. As a Mother you are always there

for them when they need you and even when they don't think they need you.

Now it is your turn. Let them help you, if they do not offer and they are

old enough ask for help. You as a Mother have given your all for your

family. At one time or another we all need support.

I have learned that from this group, and have come to really enjoy and lean

on it.

Feel free to email if you want to talk.

Gloria

MadderGlo@...

>From: Jeanette Carpenter <jeanette_cuk@...>

>Reply-

>

>Subject: [ ] Feeling sorry for myself

>Date: Thu, 8 Nov 2001 16:56:07 +0000 (GMT)

>

>

>Hy I have had a awful week I just want everything to stop. It started when

>I fell breaking a couple of ribs then my specialist told me I did have

>cirrhosis after all this time. Then yesterday I went to see my optician she

>told me to see my doctor ASAP so I went today and after a long examination

>he told me I have had a small stoke my blood presure was high 180 over 104.

>Are things ever going to get better ? I feel so tired trying to be strong

>and be there for my family all the time somewere along the line I have

>forgot about myself and have refused to believe I have been ill. My family

>mean the world to me but I need them now am I being selfish please let me

>know.

>

>Jeanette UK

>

>PS the doctor has put me on medication for my blood preasure and is sending

>me to another specialist. That will make 4 of them I don't know were I am

>going to find the time to see them all.

>

>

>

>---------------------------------

>

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I don't know why we feel we need to be the strong ones

for everyone else but it doesn't work. You need to

let them take care of you and you worry about taking

care of yourself. I hope things start turning around

for you and you start to feel better.

Bethanne

AIH 9/01

__________________________________________________

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  • 1 year later...
Guest guest

Sandy,

HI, sorry to hear about all that " stuff " seems like we are competing in the

same olympics. You are the first person that I have heard of that has had

their PS turn into sores now. That is what mine is. It is really awful and

nothing helps. I take 25mg of MTX via injection, and only seem to have brain

fog

the next day. I have pain on the day leading up to the medication, it seems

like it wears off. Maybe yours wears off and it takes the 2 days to take affect

again? I don't know, just guessing.

Take Care,

Carol M.

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Guest guest

Sandy,

Don't listen to what other people say. Until they have walked in your shoes

they should not say a word. It sounds like you are doing what you can. Not

only did you have to put up with cancer but you have the pain of PA as well. I

also have not ben working for the past 8 months and people joke around and

say I have it so easy. I would rather work day and night and not be in this

pain. Any time you want support, just come here.

Janet

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