Re: checking in + medical update

[Guest guest]

Judith,

I can relate to you. I feel the same way. I dealt with depression before

my PA was diagnosed. So this disease has been a challenge for me to accept

my limitations. I have been having crying spells. I feel like I am

blubbering idiot. I get so frustrated at this disease, it's hard for anyone

to accept with or without depression. Reading these posts help me keep in

perspective. I see the good in my situation, when I know other PA friends

out there are struggling a little harder in the midst of my struggles.

I don't feel so angry I have this disease as I feel angry about not being

able to function like I want to. I feel helpless too. When we are in the

trenches or a flare up with this disease, my thoughts are will I ever get

better? I think that comes from being worn out and fighting this disease as

a daily battle.

The reason I say I don't feel angry about this disease is because my

daughter has gone through 7 surgeries for a cleft palate. Abby will be 11

in June. I count my blessings for her too. I tell myself, this can be

repaired it's not terminal. Other kids face worse things in life. Even

though I hate watching my daughter suffer through the surgeries, it's great

on the outcome. So I remind myself PA is treatable, it could be worse.

I feel stress adds to our symptoms. One being Abby having surgery next

month. My husband and I have been looking for a new home. We have outgrown

this one. This is not a fun process for me. I know it's stressed me out

more than I should have let it. Then our insurance changed and we found out

most of our regular doctors aren't covered under the plan. Including my

daughter's surgeon. Getting x-rays done. I use to be able to get them at

my former Rhuematologist's office. With this new insurance I have to get

x-ray and lab work done at another facility. Even though my PA doc is

located directly in a hospital. This has been so frustrating and

challenging for me getting all this worked out. Especially since I'm going

to a current flare and feel more tired than normal. I know my PA flares

during stressful events in my life.

Thanks for letting me vent!

Rhonda

-- [ ] checking in + medical update

Hi, I wanted to post today and tell you what is happening with me.

I had a liver biopsy on Wednesday. The week before I had an Ultra-

sound of my liver. Hopefully I will here something early in the week.

I am seeing the Rheumatologist for the fist time later this month.

Maybe by then the high liver enzyme issue can be resolved, and the

doctors and I can start to work on a treatment for the PA. I feel a

lot of uncertainty right now.

Today I am depressed and have been most of the week. The P is

better from the steriods that my doctor prescribed. I suffer from

depression anyway, but this seems to be worse than usual. I'm

wondering if it could be from the medication that was prescribed for

the p. I know one of the side effects is mood swings.

I don't feel like I have control over my life anymore. But then how

much control do we really have anyway. I feel angry that this

disease has attacked my body. I feel some helplessness but I am eager

to find out some answers, and get busy feeling better. I am hoping

that I won't be so tired all the time and can enjoy life once again.

I went to the movie last night, and my hands starting aching. I still

had gloves in jacket pocket so I put them on. The warmth from them

helped ease the pain. It's funny how little things like that make a

difference now. As I look back I can see that I took a lot of things

for granted. That is a lesson well learned.

I am very glad to have this group for support. It means a lot to

have concern, information and help at my (sometimes aching) fingertips

I don't know what I would do without it. God has a way of putting

people in our lives when we need them.

Thanks,

Judy

[Guest guest]

Hi Judy:

I know what you mean about taking things for granted, the tiniest things I took

for granted, like waking up feeling good. I remember days when I would wake up

and feel so alive(before all this), and how it felt to just lye there and enjoy

the soft blankets and nice fluffy pillow. Now those things all cause pain, even

the really soft ones. They have to all be in the right place, not pushing here

or there. Things that are beautiful, I no longer see their beauty, I am inside a

pain bubble, and my surroundings don't get much attention from me.

I ask many times, why me, and I always say, why not me. Why would I think I was

so special that I wouldn't be handed this life of pain. And I think back over my

life. I was good to people, more then most, I had the scars from those who took

advantage of me cause of my kindness, so why am I being repaid this way. There

are no answers, and I feel at times God has no time for me either anymore. I

never hear his replies where I used to be able to. I try to think, one day at a

time, but even one day is to far ahead to view.

My parrot keeps me going many days, sounds silly, but she is like the child I

never had, she is so cute, and has such a great personality. She acts like a

toddler, so it is easy to transfer my feeling onto her. She is affectionate

back, 2 way street.

I have also lost control over my life, down to even what I eat on a daily basis,

cause I live with my Mom so dinner is what dinner is, she isn't a bad cook, but

sometimes we want certain things, and I never get to do that. I have no privacy,

no friends,my sister won't visit anymore cause of disagreement with Mom's guy

friend who lives here, so I miss her terribly. I wish she could get past it, and

come back out and visit, but I do understand her feelings.I have no social life,

no money, no house, no boyfriend, no freedom,no hobbies that I can do anymore.

It is a long grieving process that we have on our shoulders to go through, like

the process we go through when a friend dies, but it is us who have died and we

have to grief the part of us that has died, and the hard part is, that no matter

how much I grief over that, I still want to be able to do it again, maybe one

day. So I haven't let go of the hope that maybe I can one day.

Anyway, I hope you are feeling better, let us know what the tests show, and we

can all discuss them, and sessions?

Also,what your Doctor has to say also. I assume he is doing the biopsy on the

liver due to high enzymes?

Hope that will give him the info he needs. Also, how did that do the biopsy, by

arthroscopy , using tiny incisions

Jeanette French

[ ] checking in + medical update

Hi, I wanted to post today and tell you what is happening with me.

I had a liver biopsy on Wednesday. The week before I had an Ultra-

sound of my liver. Hopefully I will here something early in the week.

I am seeing the Rheumatologist for the fist time later this month.

Maybe by then the high liver enzyme issue can be resolved, and the

doctors and I can start to work on a treatment for the PA. I feel a

lot of uncertainty right now.

Today I am depressed and have been most of the week. The P is

better from the steriods that my doctor prescribed. I suffer from

depression anyway, but this seems to be worse than usual. I'm

wondering if it could be from the medication that was prescribed for

the p. I know one of the side effects is mood swings.

I don't feel like I have control over my life anymore. But then how

much control do we really have anyway. I feel angry that this

disease has attacked my body. I feel some helplessness but I am eager

to find out some answers, and get busy feeling better. I am hoping

that I won't be so tired all the time and can enjoy life once again.

I went to the movie last night, and my hands starting aching. I still

had gloves in jacket pocket so I put them on. The warmth from them

helped ease the pain. It's funny how little things like that make a

difference now. As I look back I can see that I took a lot of things

for granted. That is a lesson well learned.

I am very glad to have this group for support. It means a lot to

have concern, information and help at my (sometimes aching) fingertips

I don't know what I would do without it. God has a way of putting

people in our lives when we need them.

Thanks,

Judy

[Guest guest]

Hi Judy,

You are not on your own. I'm sure there are many people who share

your feelings of Helplessness, lack of control, depression, and

general concern, I know I do. I have forgiven my immune system

for " working over " lol, as I regularly used to work 60+ hours a week

when I was younger. Its only working off my own example.

I hope you had a nice time at the cinema and the film was good. I

hope to go to a rock concert this coming weekend but feeling like I

do today it is maybe only a pipe-dream. At least it gives me

something to look forwards to. Who knows if I go I might win a

prize for being the best robotic dancer. lol

Keep the light shining,

Ian.

>

> Hi, I wanted to post today and tell you what is happening with me.

> I had a liver biopsy on Wednesday. The week before I had an Ultra-

> sound of my liver. Hopefully I will here something early in the

week.

> I am seeing the Rheumatologist for the fist time later this month.

> Maybe by then the high liver enzyme issue can be resolved, and

the

> doctors and I can start to work on a treatment for the PA. I feel

a

> lot of uncertainty right now.

>

> Today I am depressed and have been most of the week. The P is

> better from the steriods that my doctor prescribed. I suffer from

> depression anyway, but this seems to be worse than usual. I'm

> wondering if it could be from the medication that was prescribed

for

> the p. I know one of the side effects is mood swings.

>

> I don't feel like I have control over my life anymore. But then

how

> much control do we really have anyway. I feel angry that this

> disease has attacked my body. I feel some helplessness but I am

eager

> to find out some answers, and get busy feeling better. I am hoping

> that I won't be so tired all the time and can enjoy life once

again.

>

>

> I went to the movie last night, and my hands starting aching. I

still

> had gloves in jacket pocket so I put them on. The warmth from them

> helped ease the pain. It's funny how little things like that make

a

> difference now. As I look back I can see that I took a lot of

things

> for granted. That is a lesson well learned.

>

> I am very glad to have this group for support. It means a lot to

> have concern, information and help at my (sometimes aching)

fingertips

> I don't know what I would do without it. God has a way of putting

> people in our lives when we need them.

>

> Thanks,

>

> Judy

>

[Guest guest]

Hi Jeanette,

I couldn't let another minute go by without replying to your post. I live

with some of what you described as your life. I had to sell my home of 30 +

years and move in with my oldest daughter 3 years ago as a result of some

really dumb decisions on my part. Those I will skip. I am on disability,

which

is meager, and insist on paying my daughter a portion of it for rent. I have

no money either, but I don't really need any. I am still ambulatory, so I

do the cooking. Her job has her on the road a lot, so I spend a lot of time

alone. Since I am on my own so much I can do what I want. I have many

projects going though. You have to get something started that will keep your

mind

off your pain and your problems. Just as an example, I'll make a llist. I

read, play computer games, watch tv, sit on patio and watch the birds, plant

flowers, play with beads (make my granddaughters jewelry), put old pictures

in albums, research family tree, listen to loud music, and lately, since I

live in No. California, I watch it rain. I found that I have to keep my brain

active, and I have to make myself move. I hate leaving the house by myself

because I have not bothered to learn the area I live in now. I go to the Dr.

and I go to the Safeway as seldom as possible. My daughter is after me all

the time to get out more, but with no friends here I feel I have no place to

go. I have a library card, so I know I could go there, and I would too if

someone would kick me in the rear. Sometimes I know that THAT is all I need.

I find it easier to sit here at the computer or in front of the tv. What

ususally gets me up is an echo of from years ago that said, " Use

it or lose it! " And trust me, I know it to be true. But that is another

story. This disease has so many facets that most people cannot understand

unless they have it. My greatest fear is that the fog brain will come some day

and never go away. I'm afraid of the fatigue and what if I never get enough

energy to do my menial tasks. I guess we all have our fears.

My best sister lives out of state, but we talk on the phone constantly. We

have free mobile to mobile on cell phones so the cost is low. She keeps me

grounded. We lost our mother last summer, and today would have been dad's

81st birthday, but he passed in 1978. We keep each other grounded. You must

do whatever it takes to get together with your sister. There has to be a way

to around Mom's friend. I'll pray her love for you is stronger than her

dislike for him, because it sounds like you need all the support you can get

from

her. I didn't intend to write a book. Good luck, and keep happy thoughts.

Janet in Ca

[Guest guest]

Hi Ian,

Thank you for adding a bit of sunshine to my day. I used to love to dance,

now I pray for a HOT TUB! Robotic dancing sounds like something we should

look into! lol

Janet in Ca

[Guest guest]

Hi,

It's me again. I just found a website that I think some of you may find

interesting. It is

_www.myalgia.com_ (http://www.myalgia.com) and has to do with fibromyalgia,

but also is put out there by medical people. I believe you can make queries

to them also if you have questions. One thing that I read there is that

fibromyalgia seems to go hand and hand with autoimmune diseases. Check it out.

Janet from Ca

[Guest guest]

god bless you . you sound like you have yourself together . don't kid

yourself you are doing well . You are a self motivator and you are doing the

best

you can and that's all you can do . Sometimes we expect too much from

ourselve s. keep on keeping on!. cathy from mass.

[Guest guest]

Dear Rhonda,

I empathise fully with you. It is often difficult to accept not

being able to do the things we used to do. My grand-daughter has

Nystagmus and I would gladly trade extra pain and disablement to

make it go away. I too have the crying spells but my grand-children

always lift my spirit even though they wear me out. I always have

to sleep when they have visited, but it is worth it. I wish nothing

but the best for your daughter and the outcome of all these

surguries are even better than the doctors expect. Just remember

there is some crazy bloke in the foothills of the Pennines in

Yorkshire wishing you and your family well.

Keep the light shining,

Ian.

>

> Judith,

>

> I can relate to you. I feel the same way. I dealt with

depression before

> my PA was diagnosed. So this disease has been a challenge for me

to accept

> my limitations. I have been having crying spells. I feel like I

am

> blubbering idiot. I get so frustrated at this disease, it's hard

for anyone

> to accept with or without depression. Reading these posts help me

keep in

> perspective. I see the good in my situation, when I know other PA

friends

> out there are struggling a little harder in the midst of my

struggles.

>

> I don't feel so angry I have this disease as I feel angry about

not being

> able to function like I want to. I feel helpless too. When we

are in the

> trenches or a flare up with this disease, my thoughts are will I

ever get

> better? I think that comes from being worn out and fighting this

disease as

> a daily battle.

>

> The reason I say I don't feel angry about this disease is because

my

> daughter has gone through 7 surgeries for a cleft palate. Abby

will be 11

> in June. I count my blessings for her too. I tell myself, this

can be

> repaired it's not terminal. Other kids face worse things in

life. Even

> though I hate watching my daughter suffer through the surgeries,

it's great

> on the outcome. So I remind myself PA is treatable, it could be

worse.

>

> I feel stress adds to our symptoms. One being Abby having surgery

next

> month. My husband and I have been looking for a new home. We

have outgrown

> this one. This is not a fun process for me. I know it's stressed

me out

> more than I should have let it. Then our insurance changed and we

found out

> most of our regular doctors aren't covered under the plan.

Including my

> daughter's surgeon. Getting x-rays done. I use to be able to get

them at

> my former Rhuematologist's office. With this new insurance I have

to get

> x-ray and lab work done at another facility. Even though my PA

doc is

> located directly in a hospital. This has been so frustrating and

> challenging for me getting all this worked out. Especially since

I'm going

> to a current flare and feel more tired than normal. I know my PA

flares

> during stressful events in my life.

>

> Thanks for letting me vent!

> Rhonda

>

[Guest guest]

Dear Jeanette,

You have got friends....We are here....We feel your pain and

understand what you are going through. Even though I have family

around me it can be one of the loneliest places to be when they

don't fully understand what we are going through on a daily basis.

Though you feel you have lost your life there is often something

else that you have gained. Mine is time. Time for me and time for

others. I believe that time is the most precious commodity that we

can deal in. So, even though I am relitively poor in the monetary

sense, I feel rich.

I have forgiven my immune system for working over-time. I myself

used to work 60+ hours a week, it is in essence only following my

lead. When you are feeling low, just remember there is this

crazy " warlock " lol in the foothills of the Pennine Hills in

Yorkshire wishing you well and you will have to smile.

Keep the light shining,

Ian.

>

> Hi Judy:

> I know what you mean about taking things for granted, the tiniest

things I took for granted, like waking up feeling good. I remember

days when I would wake up and feel so alive(before all this), and

how it felt to just lye there and enjoy the soft blankets and nice

fluffy pillow. Now those things all cause pain, even the really soft

ones. They have to all be in the right place, not pushing here or

there. Things that are beautiful, I no longer see their beauty, I am

inside a pain bubble, and my surroundings don't get much attention

from me.

> I ask many times, why me, and I always say, why not me. Why would

I think I was so special that I wouldn't be handed this life of

pain. And I think back over my life. I was good to people, more then

most, I had the scars from those who took advantage of me cause of

my kindness, so why am I being repaid this way. There are no

answers, and I feel at times God has no time for me either anymore.

I never hear his replies where I used to be able to. I try to think,

one day at a time, but even one day is to far ahead to view.

> My parrot keeps me going many days, sounds silly, but she is like

the child I never had, she is so cute, and has such a great

personality. She acts like a toddler, so it is easy to transfer my

feeling onto her. She is affectionate back, 2 way street.

> I have also lost control over my life, down to even what I eat on

a daily basis, cause I live with my Mom so dinner is what dinner is,

she isn't a bad cook, but sometimes we want certain things, and I

never get to do that. I have no privacy, no friends,my sister won't

visit anymore cause of disagreement with Mom's guy friend who lives

here, so I miss her terribly. I wish she could get past it, and come

back out and visit, but I do understand her feelings.I have no

social life, no money, no house, no boyfriend, no freedom,no hobbies

that I can do anymore. It is a long grieving process that we have on

our shoulders to go through, like the process we go through when a

friend dies, but it is us who have died and we have to grief the

part of us that has died, and the hard part is, that no matter how

much I grief over that, I still want to be able to do it again,

maybe one day. So I haven't let go of the hope that maybe I can one

day.

> Anyway, I hope you are feeling better, let us know what the tests

show, and we can all discuss them, and sessions?

> Also,what your Doctor has to say also. I assume he is doing the

biopsy on the liver due to high enzymes?

> Hope that will give him the info he needs. Also, how did that do

the biopsy, by arthroscopy , using tiny incisions

> Jeanette French

>

[Guest guest]

What

> ususally gets me up is an echo of

> from years ago that said, " Use

> it or lose it! " And trust me, I know it to be true.

Hi Janet,

I can really relate to what you're life is like now.

Although I'm still able to work 5 hours a day, I find

it difficult to do anything extra such as shopping,

going out to dinner or visiting friends/relatives,

etc. I'd rather be in my own environment with my

safety nets in place, and be able to go at my own pace

with lots of breaks as needed. It helps that my son is

now in college, and we just have our 14 year old

daughter at home, so life isn't as intense with youth

activities as it used to be.

One good habit that I've developed is to do gentle

stretching and easy weight lifting (5 lbs) in the

evening as I watch Jeopardy! - exercise for the mind

as well as the body I used to run and enjoy working

out. Now there's too much pain in my feet and spine to

be really physical, but the gentle stretching, range

of motion and weight bearing movements actually help

me to feel better for awhile after I'm done. I try to

take my pain meds about half hour to an hour before I

start stretching so it isn't so agonizing, but I have

to admit that sometimes I have to force myself to do

this, and sometimes I don't get there at all, but my

body is getting the benefits more often than not.

Afterwards, I immediately get heat on my back and ice

on my feet, and spend the rest of the evening rotating

the ice pack/heat to where I need it (back, feet,

hands, jaw). My husband says I'm the " ice queen " , a

day doesn't pass where my ice bag isn't in use!

warm blessings,

jane

__________________________________________________

[Guest guest]

HOT TUB!!!.......Hmmmmm.....My mind wanders....If only I could get in

and out of one..LOL LOL LOL As for robotic dancing, it's only because

of the stiffness that I can't make that proper movements..LOL LOL,

>

> Hi Ian,

> Thank you for adding a bit of sunshine to my day. I used to love

to dance,

> now I pray for a HOT TUB! Robotic dancing sounds like something we

should

> look into! lol

> Janet in Ca

>

>

>

[Guest guest]

Hi Jane:

I am a big user of ice packs also, they do help my low baqk for awhile,

and the thewrmacare heat wraps aren't bad either.

Jeanette

Quoting jane karsten <janekarsten@...>:

> What

>> ususally gets me up is an echo of

>> from years ago that said, " Use

>> it or lose it! " And trust me, I know it to be true.

>

> Hi Janet,

>

> I can really relate to what you're life is like now.

> Although I'm still able to work 5 hours a day, I find

> it difficult to do anything extra such as shopping,

> going out to dinner or visiting friends/relatives,

> etc. I'd rather be in my own environment with my

> safety nets in place, and be able to go at my own pace

> with lots of breaks as needed. It helps that my son is

> now in college, and we just have our 14 year old

> daughter at home, so life isn't as intense with youth

> activities as it used to be.

>

> One good habit that I've developed is to do gentle

> stretching and easy weight lifting (5 lbs) in the

> evening as I watch Jeopardy! - exercise for the mind

> as well as the body I used to run and enjoy working

> out. Now there's too much pain in my feet and spine to

> be really physical, but the gentle stretching, range

> of motion and weight bearing movements actually help

> me to feel better for awhile after I'm done. I try to

> take my pain meds about half hour to an hour before I

> start stretching so it isn't so agonizing, but I have

> to admit that sometimes I have to force myself to do

> this, and sometimes I don't get there at all, but my

> body is getting the benefits more often than not.

> Afterwards, I immediately get heat on my back and ice

> on my feet, and spend the rest of the evening rotating

> the ice pack/heat to where I need it (back, feet,

> hands, jaw). My husband says I'm the " ice queen " , a

> day doesn't pass where my ice bag isn't in use!

>

> warm blessings,

> jane

>

[Guest guest]

Ian,

Thanks so much for your kind words. It means so much to me. This flare are

been almost unbearable to deal with. I get my x-ray results from the doc

tomorrow to see if I have permanent damage in my left hand.

My shoulders hurt so much now along with my finger with the PA flare. I

have noticed my knees almost give out when I first get up from a chair.

This is scary for me. My elbows lock up too. Is this part of PA too? I

would feel a little relieved if I know it's all these symptoms are related.

I'm thinking in the back of my mind, is there something else going on here

other than PA.

Does anyone take Salsalate along with Methotrexate for their treatment? Is

it okay to take NSAID'S with DMARD'S as needed? I assumed these treatments

were given separately? I'm just so worn out. My arms feel heavy like it

takes extra effort to lift them up.

Do you have any ideas out there in PA land?

Thanks!

Rhonda

-- [ ] Re: checking in + medical update

Dear Rhonda,

I empathise fully with you. It is often difficult to accept not

being able to do the things we used to do. My grand-daughter has

Nystagmus and I would gladly trade extra pain and disablement to

make it go away. I too have the crying spells but my grand-children

always lift my spirit even though they wear me out. I always have

to sleep when they have visited, but it is worth it. I wish nothing

but the best for your daughter and the outcome of all these

surguries are even better than the doctors expect. Just remember

there is some crazy bloke in the foothills of the Pennines in

Yorkshire wishing you and your family well.

Keep the light shining,

Ian.