Getting others to understand

[Guest guest]

Does anyone have problems getting family to " get it " . My sister has a

pinched nerve in her back and they seem to be able to understand her

pain but with me I swear they think I am taking the meds for the

narcotics. I tried the Tramadol and it didn't work. The pain was so

bad that I just sat in my chair and cried I couldn't sleep I couldn't

get up with out severe pain. So I called my rheumy and he prescribed

morphine because Vicodin and Percocet keep me awake and Darvocet

doesn't do much. So I told my mother about it and she said " well

THATS not addictive! " What the hell am I supposed to do? Sit here and

cry. Gee that's productive. I just get so frustrated. I don't know

what to say to them to get them to understand that my wrists, fingers,

shoulder, back, and hips HURT. I don't mean a little ache. I mean I

have to very carefully waddle across the room. She says take a hot

bath. Ya know if that would work I would do it. It's not like its a

new idea and I haven't tried it a hundred times.

Sorry for the rant, but I get SO frustrated and don't know how to make

people understand.

[Guest guest]

I find that the easiest way to deal with this problem is to lower my

expectations. I have discovered that with PA ,as with many health conditions if

they don't got it, they don't get it.

I do find that it sometimes helps if you do kind of a role play. Ask the person

or person to think of the worst, most painful day they have ever experienced,

and then think of having that every day with little relief.

Sometimes that wakes them up a bit. If it doesn't so be it. Print them off some

literature.

[Guest guest]

Maybe you could share with members of your family the texts of some of the

messages from here (with names erased, of course) to show them how other people

are suffering and that this is a devastating disease for many.

Joanna Hoelscher

630-833-7361

[Guest guest]

I hear and feel your pain!...I have had to teach my 5 year old daughter to start

the car and help me get dressed and I have severe psoriasis where my skin is

already bleeding and still with the visible swelling in my joints that have to

be drained of fluid and injected with steroids they think I have some kind of

exaggerated phantom pain!...Who new this existed. All I know is that people

really take for granted how good life is and have no idea what we go thru. Hang

in there, we are listening and I feel your pain!

[Guest guest]

Illina - I received a free book, courtesy of the company that makes my

drug. The book is from the National Arthritis Foundation and

called " Tips for Good Living with Arthritis. " Here's a good tip for

starting your car:

" Put your car key in a stiff sleeve that allows you to turn it with

your palm or a fist instead of grasping it with your fingers. These

sleeves are available through assistive-device companies, or you can

make your own out of stiff cardboard. "

It also suggests you contact your car's manufacturer to find out

whether they offer an optional larger key for disabled people.

If you google " assistive devices " you can find sites that sell such

things.

I'm finding lots of good tips in this book!

regards,

sherry z

[Guest guest]

greetingfs....yes for on the 23 years pa and then osteo arthritis,,,,,losing all

of the cart, in the toes, and both knees will require tkr in about two years.

and the neck is gone....i have been on the major drugs, but what keeps me going

is the mental aspect.....blessed be,,,,bob

[Guest guest]

I talked to one of my sisters tonight and she didn't realize that it

had spread to anywhere other than my hands. It is now in my back,

hips, and shoulders. She actually gets it! She doesn't know the

extent of the pain but she understands at least that it is a lot! So

that is great! I have one sibling that at least is making an effort

to understand where I am coming from.

My Pastor is also really great! Her mom and sister both had RA so she

understands what I am dealing with. I finally broke down and got my

Handicap parking permit today. I just get tired and sore walking into

Costo. So I just said screw it I am getting the permit. I was pretty

happy with my rehumy. No questions asked he just signed the forms and

about half hour later I had my permit.

I am so glad I found this group. It is so nice to have a place where

I can find answers and just vent when I need to and have people

understand because they have been there.

Thanks everybody!!!

[Guest guest]

I endured several years of my family rolling their eyes and telling

me they were " sick " of hearing me say how much I hurt. My husband

even told me one time if he had to hear how much I hurt one more

time he would throw up. I never said it to him again...for several

years....he eventually (after going to the rheumy with me) believed

I was really having problems with pain, stiffness, fatigue,

depression because of all of it. Now he is supportive. It was

really hard though. I have a document I printed off a few years ago

that I taped to my refrigerator and gave copies to my family about

how to deal with someone who has to endure constant pain. They all

read it and I think it helped. I will see if I can find it and send

it to you if you are interested. It may have even come from this

list...I am not sure. God bless you!

[Guest guest]

I guess it's hard to understand pain unless you have

been there yourself. I truly didn't understand the

pain of arthritis until I had it at the age of 25. I

feel your frustration. You are fortunate to have a

sister who is listening and wants to understand. I

think the best we can do for ourselves when were

hurting is to make sure we have one person who we can

turn to for support and a shoulder to cry on. For me

that was my husband.

I hope your arthritis can be controlled with the

proper meds or any other type of healthy diet.

The sad thing about Psoriatic or any other autoimmune

disease is that it can spread without warning.

I wish you all the best in your journey with this

disease.

Just know your in my thoughts and prayers as we all

fight our pains.

Your definitely not alone, and thank you for reminding

me that it is nice to vent about this PsA.

-Rita

Colorado

-

[Guest guest]

I wrote my Mom a letter explaining my feelings and how I didn't think

people " get it " about what pain I am in. She read it and that night

when I had pain getting up and down out of a kitchen chair she noticed

and asked if I was ok. So I think she actually gets it now. I

included the tips for dealing with people in pain and I think I may

have gotten through to her. So thanks to everyone! I almost cried

when she asked if I was ok. not because I was in so much pain but

that I could see the concern in her face and the fact that I reached

her.

[Guest guest]

Dear Tweedy,

I’m so glad your Mom picked up on your letter and is finally noticing your

pain levels. There is hope in getting others to understand, but it’s a hard

battle at times. The best thing you can do is just explain it to them and

if they get it great, but if they don’t, then just try not to dwell on it.

Some people never do get it until pain hits them. I wouldn’t wish chronic

pain on anyone though. Glad the pain tips helped. Fran in Florida

[Guest guest]

I know my sister with the pinched nerve will never " get it " That is

just how she is. So I am just not even going to worry about her. I

will just ignore her in relation to the PA. One other sister gets it

right off but she has always been the most compassionate of the

siblings. So I have one sister and two brothers that I am not sure

how much they understand. I spent 90% of yesterday asleep in bed and

feel better today so the rest does help. Having talked to my Mother

and getting her to understand was a HUGE step. And I feel much more

optimistic about things now that she seems to understand.

[Guest guest]

Tweety, for what it's worth, it took over a year but now all my

relatives " get it. " For my husband, it took talking to a woman at

work who has RA. I don't know what she told him, but he had an

overnight change of attitude!

My grown daughters took longer. They both live out of state. I had

my husband talk to them several times. I think at least one of them

did some web research that helped, maybe both of them did. Finally,

just seeing me over time - noticing how one day I was really good and

then others days I could not function - I think they started to see

that I wasn't " trying " to be sick. Now, when I visit them, they pay

attention to the signals and are very solicitous on the bad days to

try to make things easier for me.

My two sisters were most compassionate from the beginning. We think

our father may have had nail P and PA undiagnosed for much of his

life. He had crumbly fingernails and back trouble since I was a

child. When I was only 19, he suffered a major stroke. In his later

years, he walked just like me (!) but we all thought it was just from

his stroke. He complained all the time about various pains in all

his joints, but again we just attributed everything to the stroke and

old age. We all 3 seriously suspect he may have had PA.

Anyway, it can take a year or two even in the best of situations for

the family to start to understand. So don't give up!

best regards,

sherry z