Re: SIERRA AND HUSBANDS OUT BURSTS

[Guest guest]

SIERRA,

I KNOW FIRST HAND WHAT YOU HUBBY IS GOING THROUGH, YOU NEED TO

REALIZE THAT HIS WHOLE LIFE AS HE KNEW IT AND COUNTED ON IT STAYING

THE SAME IS CHANGING OR DEPENDING ON THE SEVERITY IS GONE....THAT

TAKES ALOT OF MENTAL ADJUSTMENT AND FOR ME 3 YEARS LATER WITH 3 AUTO

IMMUNE DISEASES AND LUMBAR INJURIES, I AM STILL TRYING TO COME TO

TERMS WITH BEING IN A WHEELCHAIR MOST OF THE DAY.

ALSO, THE MEDS ARE HARD ON YOUR BODY, MTX MAKES YOU SICK AND

CRANKY AND PREDNISONE, IS JUST PLAIN HORRIBLE....ALSO ANY LEVEL OF

CHRONIC PAIN WEARS DOWN A EVEN THE STRONGEST PERSON, IT EFFECTS

THEIR SLEEPING AND GETTING ENOUGH REST TO.

I FOUND ONE THING THAT HELPED ME, I HAVE TO HAVE SOME TIME DURING

THE DAY WHERE I AM COMPLETELY LEFT ALONE, NO ONE ENTERS MY ROOM, ALL

PHONE CALLS ARE FIELDED FOR ME AND I EITHER HAVE A GOOD CRY, LISTEN

TO MUSIC, READ A BOOK WHATEVER I WANT..BUT THE KNOWING THAT I HAVE

SOME QUIET TIME AND TIME THAT I WILL NOT BE ITIMIDATED BY ANYONE IS

THE KEY, ALSO WHEN I AM HAVING BAD PAIN, I HAVE ASKED EVERYONE TO

REMEMBER TO TALK VERY VERY SOFLTY TO EACH OTHER AND ESPECIALLY TO

ME, THAT KEEPS MY CALM...LOUD NOISES WHEN YOU ARE IN DEEP PAIN ONLY

ADD TO STRESS.....AND EFFEXOR HAS SAVED MY LIFE....IT IS A GREAT MED

AND IT TAKES TIME TO GET THE DOSAGE RIGHT, JUST LIKE THE RA MEDS, IT

TAKES PATIENCE.....

FAMILY MEMBERS CAN BE THE KEY, TO HELPING A CHRONIC PAIN PERSON,

TO BE ABLE TO HOLD IT ALL TOGETHER, AND SHOW THEIR COMPLETE SUPPORT

BY FOLLOWING A FEW EASY DETAILS LIKE THE ONES I MENTIONED....THEY

ARE NOT THAT HARD, AND THEY MEAN SO MUCH.....

GOOD LUCK,

CINDI

[Guest guest]

SIERRA,

I KNOW FIRST HAND WHAT YOU HUBBY IS GOING THROUGH, YOU NEED TO

REALIZE THAT HIS WHOLE LIFE AS HE KNEW IT AND COUNTED ON IT STAYING

THE SAME IS CHANGING OR DEPENDING ON THE SEVERITY IS GONE....THAT

TAKES ALOT OF MENTAL ADJUSTMENT AND FOR ME 3 YEARS LATER WITH 3 AUTO

IMMUNE DISEASES AND LUMBAR INJURIES, I AM STILL TRYING TO COME TO

TERMS WITH BEING IN A WHEELCHAIR MOST OF THE DAY.

ALSO, THE MEDS ARE HARD ON YOUR BODY, MTX MAKES YOU SICK AND

CRANKY AND PREDNISONE, IS JUST PLAIN HORRIBLE....ALSO ANY LEVEL OF

CHRONIC PAIN WEARS DOWN A EVEN THE STRONGEST PERSON, IT EFFECTS

THEIR SLEEPING AND GETTING ENOUGH REST TO.

I FOUND ONE THING THAT HELPED ME, I HAVE TO HAVE SOME TIME DURING

THE DAY WHERE I AM COMPLETELY LEFT ALONE, NO ONE ENTERS MY ROOM, ALL

PHONE CALLS ARE FIELDED FOR ME AND I EITHER HAVE A GOOD CRY, LISTEN

TO MUSIC, READ A BOOK WHATEVER I WANT..BUT THE KNOWING THAT I HAVE

SOME QUIET TIME AND TIME THAT I WILL NOT BE ITIMIDATED BY ANYONE IS

THE KEY, ALSO WHEN I AM HAVING BAD PAIN, I HAVE ASKED EVERYONE TO

REMEMBER TO TALK VERY VERY SOFLTY TO EACH OTHER AND ESPECIALLY TO

ME, THAT KEEPS MY CALM...LOUD NOISES WHEN YOU ARE IN DEEP PAIN ONLY

ADD TO STRESS.....AND EFFEXOR HAS SAVED MY LIFE....IT IS A GREAT MED

AND IT TAKES TIME TO GET THE DOSAGE RIGHT, JUST LIKE THE RA MEDS, IT

TAKES PATIENCE.....

FAMILY MEMBERS CAN BE THE KEY, TO HELPING A CHRONIC PAIN PERSON,

TO BE ABLE TO HOLD IT ALL TOGETHER, AND SHOW THEIR COMPLETE SUPPORT

BY FOLLOWING A FEW EASY DETAILS LIKE THE ONES I MENTIONED....THEY

ARE NOT THAT HARD, AND THEY MEAN SO MUCH.....

GOOD LUCK,

CINDI

[Guest guest]

I was a caregiver. I worked in a nursing home and in peoples homes, mostly

advanced MS and some Hospice.

Then I got RA.

SUddenly it was ME who had to ask for help getting toothpaste on my toothbrush,

or combing my hair. or getting me out of the bathtub. Instead of bathing my

youngest child, someone had to help ME bathe.

Sure some days I accept my limits and difficulties OK.....but other days when I

am going along my merry way thru my day, I go to open a can and can't, or I go

to comb my hair and can't (some days I can, some days I can't)-- it is like a

slap in the face, it hurts my pride, it makes me feel strange to have to go in

search of one of my kids or husband to come do this simple task for me.

Oh by now I have learned some tricks, like I gave up my blue jeans for elastic

waist pants cuz many days after using the bathroom, I could not do the button or

snap on my jeans....I learned to wear dresses some days cuz some days even

pulling up my pants was hard..it was SO bothersome and humiliating to have to

grab one of my kids to come do it for me....

On thanksgiving, I was cruising along making dinner and YIKES, I could not open

the cans, I could not handle the roater pan with the turkey in it and I could

not hold the knife to peel potatos. It broke my heart anew, even after a few

years of having this illness, it made me mad all over again.

At christmas time, some days I could wrap and beribbon gifts and that was fine,

but some days my wrists and fingers could not tolerate it. That was

frustrating.

Some days I go out for coffee with friends and I cannot open the little sugar

packets and the little creamers- well, I can tell you it disrupts conversation

to have to stop conversation to look across the table at a friend and ask them

if they would mind opening the sugars and creamers so you can drink your own

coffee?

The little things just com ealong and slap me i the face sometimes. SOmetimes

it is harder than others. ANd some days I do not need help with anything,

sometimes I need no help for weeks, and then WHAM a day comes along and suddenly

I have to ask for help again.

It makes me angry, embarrassed and upset. Humilated.

when people look at me and see a 45 year old woman who appears fine, they

sometimes get kinda funny when you cannot open the door at the store yourself.or

they look at you creepy when you park in handicapped....

it can set you on edge.

- In , " CINDI " <heinscsf@y...> wrote:

>

> SIERRA,

> I KNOW FIRST HAND WHAT YOU HUBBY IS GOING THROUGH, YOU NEED TO

> REALIZE THAT HIS WHOLE LIFE AS HE KNEW IT AND COUNTED ON IT STAYING

> THE SAME IS CHANGING OR DEPENDING ON THE SEVERITY IS GONE....THAT

> TAKES ALOT OF MENTAL ADJUSTMENT AND FOR ME 3 YEARS LATER WITH 3 AUTO

> IMMUNE DISEASES AND LUMBAR INJURIES, I AM STILL TRYING TO COME TO

> TERMS WITH BEING IN A WHEELCHAIR MOST OF THE DAY.

> ALSO, THE MEDS ARE HARD ON YOUR BODY, MTX MAKES YOU SICK AND

> CRANKY AND PREDNISONE, IS JUST PLAIN HORRIBLE....ALSO ANY LEVEL OF

> CHRONIC PAIN WEARS DOWN A EVEN THE STRONGEST PERSON, IT EFFECTS

> THEIR SLEEPING AND GETTING ENOUGH REST TO.

> I FOUND ONE THING THAT HELPED ME, I HAVE TO HAVE SOME TIME DURING

> THE DAY WHERE I AM COMPLETELY LEFT ALONE, NO ONE ENTERS MY ROOM, ALL

> PHONE CALLS ARE FIELDED FOR ME AND I EITHER HAVE A GOOD CRY, LISTEN

> TO MUSIC, READ A BOOK WHATEVER I WANT..BUT THE KNOWING THAT I HAVE

> SOME QUIET TIME AND TIME THAT I WILL NOT BE ITIMIDATED BY ANYONE IS

> THE KEY, ALSO WHEN I AM HAVING BAD PAIN, I HAVE ASKED EVERYONE TO

> REMEMBER TO TALK VERY VERY SOFLTY TO EACH OTHER AND ESPECIALLY TO

> ME, THAT KEEPS MY CALM...LOUD NOISES WHEN YOU ARE IN DEEP PAIN ONLY

> ADD TO STRESS.....AND EFFEXOR HAS SAVED MY LIFE....IT IS A GREAT MED

> AND IT TAKES TIME TO GET THE DOSAGE RIGHT, JUST LIKE THE RA MEDS, IT

> TAKES PATIENCE.....

> FAMILY MEMBERS CAN BE THE KEY, TO HELPING A CHRONIC PAIN PERSON,

> TO BE ABLE TO HOLD IT ALL TOGETHER, AND SHOW THEIR COMPLETE SUPPORT

> BY FOLLOWING A FEW EASY DETAILS LIKE THE ONES I MENTIONED....THEY

> ARE NOT THAT HARD, AND THEY MEAN SO MUCH.....

> GOOD LUCK,

> CINDI

[Guest guest]

I was a caregiver. I worked in a nursing home and in peoples homes, mostly

advanced MS and some Hospice.

Then I got RA.

SUddenly it was ME who had to ask for help getting toothpaste on my toothbrush,

or combing my hair. or getting me out of the bathtub. Instead of bathing my

youngest child, someone had to help ME bathe.

Sure some days I accept my limits and difficulties OK.....but other days when I

am going along my merry way thru my day, I go to open a can and can't, or I go

to comb my hair and can't (some days I can, some days I can't)-- it is like a

slap in the face, it hurts my pride, it makes me feel strange to have to go in

search of one of my kids or husband to come do this simple task for me.

Oh by now I have learned some tricks, like I gave up my blue jeans for elastic

waist pants cuz many days after using the bathroom, I could not do the button or

snap on my jeans....I learned to wear dresses some days cuz some days even

pulling up my pants was hard..it was SO bothersome and humiliating to have to

grab one of my kids to come do it for me....

On thanksgiving, I was cruising along making dinner and YIKES, I could not open

the cans, I could not handle the roater pan with the turkey in it and I could

not hold the knife to peel potatos. It broke my heart anew, even after a few

years of having this illness, it made me mad all over again.

At christmas time, some days I could wrap and beribbon gifts and that was fine,

but some days my wrists and fingers could not tolerate it. That was

frustrating.

Some days I go out for coffee with friends and I cannot open the little sugar

packets and the little creamers- well, I can tell you it disrupts conversation

to have to stop conversation to look across the table at a friend and ask them

if they would mind opening the sugars and creamers so you can drink your own

coffee?

The little things just com ealong and slap me i the face sometimes. SOmetimes

it is harder than others. ANd some days I do not need help with anything,

sometimes I need no help for weeks, and then WHAM a day comes along and suddenly

I have to ask for help again.

It makes me angry, embarrassed and upset. Humilated.

when people look at me and see a 45 year old woman who appears fine, they

sometimes get kinda funny when you cannot open the door at the store yourself.or

they look at you creepy when you park in handicapped....

it can set you on edge.

- In , " CINDI " <heinscsf@y...> wrote:

>

> SIERRA,

> I KNOW FIRST HAND WHAT YOU HUBBY IS GOING THROUGH, YOU NEED TO

> REALIZE THAT HIS WHOLE LIFE AS HE KNEW IT AND COUNTED ON IT STAYING

> THE SAME IS CHANGING OR DEPENDING ON THE SEVERITY IS GONE....THAT

> TAKES ALOT OF MENTAL ADJUSTMENT AND FOR ME 3 YEARS LATER WITH 3 AUTO

> IMMUNE DISEASES AND LUMBAR INJURIES, I AM STILL TRYING TO COME TO

> TERMS WITH BEING IN A WHEELCHAIR MOST OF THE DAY.

> ALSO, THE MEDS ARE HARD ON YOUR BODY, MTX MAKES YOU SICK AND

> CRANKY AND PREDNISONE, IS JUST PLAIN HORRIBLE....ALSO ANY LEVEL OF

> CHRONIC PAIN WEARS DOWN A EVEN THE STRONGEST PERSON, IT EFFECTS

> THEIR SLEEPING AND GETTING ENOUGH REST TO.

> I FOUND ONE THING THAT HELPED ME, I HAVE TO HAVE SOME TIME DURING

> THE DAY WHERE I AM COMPLETELY LEFT ALONE, NO ONE ENTERS MY ROOM, ALL

> PHONE CALLS ARE FIELDED FOR ME AND I EITHER HAVE A GOOD CRY, LISTEN

> TO MUSIC, READ A BOOK WHATEVER I WANT..BUT THE KNOWING THAT I HAVE

> SOME QUIET TIME AND TIME THAT I WILL NOT BE ITIMIDATED BY ANYONE IS

> THE KEY, ALSO WHEN I AM HAVING BAD PAIN, I HAVE ASKED EVERYONE TO

> REMEMBER TO TALK VERY VERY SOFLTY TO EACH OTHER AND ESPECIALLY TO

> ME, THAT KEEPS MY CALM...LOUD NOISES WHEN YOU ARE IN DEEP PAIN ONLY

> ADD TO STRESS.....AND EFFEXOR HAS SAVED MY LIFE....IT IS A GREAT MED

> AND IT TAKES TIME TO GET THE DOSAGE RIGHT, JUST LIKE THE RA MEDS, IT

> TAKES PATIENCE.....

> FAMILY MEMBERS CAN BE THE KEY, TO HELPING A CHRONIC PAIN PERSON,

> TO BE ABLE TO HOLD IT ALL TOGETHER, AND SHOW THEIR COMPLETE SUPPORT

> BY FOLLOWING A FEW EASY DETAILS LIKE THE ONES I MENTIONED....THEY

> ARE NOT THAT HARD, AND THEY MEAN SO MUCH.....

> GOOD LUCK,

> CINDI

[Guest guest]

I can relate to what you are saying. I am a caregiver, a nurse. I

have had to swallow my pride many times. I try not to let it show,

but it would seem that the stress of trying can make things worse.

I have assisted in surgeries on people with advanced RA. I see them

and I see what I may become. It is a real reality check (one I

would like to mark as void). I do what I can, try to rest between

tasks and multitask a lot more. Unfortunately, the resting part

doesn't come often enough.

Everytime I notice it affecting my life, it just pisses me off

(pardon the language). I even take a cane in to work with me

because by the end of the day, it takes the rest of what little

energy I have left to get to the car. I had a similar event at

Thanksgiving. Inside I was screaming and cursing because of my

limitations. Outside I just stopped, rested, and put it aside for

someone else to do (my sister and I shared the cooking).

I hear what you're saying about parking in handicap spots as well.

People look at me a if I were commiting a crime. If only they could

see the pain inside. How every move hurts and requires thinking

ahead to be prepared for the worse. Right now I have a broken foot

and torn tendon (on the same leg), so I have to wear a waling boot

and still use the cane at times. In that attire I don't get the

looks. And when I finally get the strenght to go out, I get in the

parking lot and what do I see?? Someone parked in the last handicap

spot just waiting on someone who ran into the store to get one or

two things. This is especially difficult at the WalMart.

I have gotten so mad at my situation and what I am having to go

through that one day at home I just went ballistic. I started to

throw things and I even punched the drywall!! Got a broken and

dislocated finger for that little fit. I couldn't control myself.

I was angry, I knew I was angry, but I had no control over what I

was doing. In part, I know the prednisone was to blame. But, I had

to get the anger out. I felt a liitle better afterward. My finger

didn't!! I had to reduce the fracture and the dislocation. When I

got back to work, one of the ortho surgeons I work with had it X-

rayed and made me a splint?

Cindi is correct about the medications. It is a true trial and

error. Give it time. Patience is something that doesn't come

easy. Especially when you feel so lousy. Too bad duct-tape won't

fix us up!! I would love to get a hold of Harry Potter's wand or

Jeanie in her bottle to fix us up!!

It is a hard life for us. Just know that you are not alone in what

you are going through. No matter how alone you feel. When I feel

like that, I come to this website just to get it out. It helps

tremendesly. Hang in there. And come here to let it out....Gentle

hugs and many prayers.......Marina

[Guest guest]

I can relate to what you are saying. I am a caregiver, a nurse. I

have had to swallow my pride many times. I try not to let it show,

but it would seem that the stress of trying can make things worse.

I have assisted in surgeries on people with advanced RA. I see them

and I see what I may become. It is a real reality check (one I

would like to mark as void). I do what I can, try to rest between

tasks and multitask a lot more. Unfortunately, the resting part

doesn't come often enough.

Everytime I notice it affecting my life, it just pisses me off

(pardon the language). I even take a cane in to work with me

because by the end of the day, it takes the rest of what little

energy I have left to get to the car. I had a similar event at

Thanksgiving. Inside I was screaming and cursing because of my

limitations. Outside I just stopped, rested, and put it aside for

someone else to do (my sister and I shared the cooking).

I hear what you're saying about parking in handicap spots as well.

People look at me a if I were commiting a crime. If only they could

see the pain inside. How every move hurts and requires thinking

ahead to be prepared for the worse. Right now I have a broken foot

and torn tendon (on the same leg), so I have to wear a waling boot

and still use the cane at times. In that attire I don't get the

looks. And when I finally get the strenght to go out, I get in the

parking lot and what do I see?? Someone parked in the last handicap

spot just waiting on someone who ran into the store to get one or

two things. This is especially difficult at the WalMart.

I have gotten so mad at my situation and what I am having to go

through that one day at home I just went ballistic. I started to

throw things and I even punched the drywall!! Got a broken and

dislocated finger for that little fit. I couldn't control myself.

I was angry, I knew I was angry, but I had no control over what I

was doing. In part, I know the prednisone was to blame. But, I had

to get the anger out. I felt a liitle better afterward. My finger

didn't!! I had to reduce the fracture and the dislocation. When I

got back to work, one of the ortho surgeons I work with had it X-

rayed and made me a splint?

Cindi is correct about the medications. It is a true trial and

error. Give it time. Patience is something that doesn't come

easy. Especially when you feel so lousy. Too bad duct-tape won't

fix us up!! I would love to get a hold of Harry Potter's wand or

Jeanie in her bottle to fix us up!!

It is a hard life for us. Just know that you are not alone in what

you are going through. No matter how alone you feel. When I feel

like that, I come to this website just to get it out. It helps

tremendesly. Hang in there. And come here to let it out....Gentle

hugs and many prayers.......Marina