RE: [c_p]loneliness/support system

[Guest guest]

I am really lucky that my husband, daughter, son in law and their roommate all

understand that I can not do a lot at one time. When we go places, we go at MY

speed.

My daughter used to think I was just addicted to the meds, and the pain was not

that bad. Though she knew that I had some pain, she thought I was over

emphasizing it. Three things helped with this one. I offered to let her handle

the main medications. She gives me

a week supply at a time, and usually less than is actually prescribed on the IR

meds. IF I need more, she usually gives them up if she thinks I am really

hurting. That made her aware that I am not just trying to get high I am

treating the pain.

The second thing I did was go through a sleep study. They found

that I was waking up throughout the night, up to 100 times a night, literally

CRYING with the pain. That, I think, hit home more than anything else. That the

nurse, and the doctor flat showed her where the pain was waking me up.

And finally, I agreed to look into other means forms of pain control, such as

the spinal cord stimulator. This week, with the trial in, she had to do a lot

for me. She saw how much pain I have been in and that I am dealing with it, and

she is understands that I wouldn't put myself through this if I WASN'T in

serious pain.

I wish everyone had the support system I have.

Marta

[Guest guest]

Marta wrote:

> I am really lucky that my husband, daughter, son in law and their roommate all

understand that I can not do a lot at one time. When we go places, we go at MY

speed.

> ]The second thing I did was go through a sleep study. They found that I was

waking up throughout the night, up to 100 times a night, literally CRYING with

the pain. That, I think, hit home more than anything else. That the nurse, and

the doctor flat showed her where the pain was waking me up.

Marta,

I actually had a medical personnel tell me that " pain " cannot wake you up if you

were asleep, dumbest remark a person could make. I cause myself muscle spasms

by trying to get in a position I do not hurt, " straightening " my leg out to

where it gets " stuck " in that postion and I do not stretch it enough.

I also had a sleep study and it is amazing seeing how much movement we make

during the night even if we think we are still. Bennie

[Guest guest]

My husband hears me crying in my sleep all the time and when he wakes me up and

I will be in so much pain.  I scared my grandma because I was sleeping on her

couch and when she came into her living room I was crying in my sleep and when

she touched me I jumped and screamed I was hurting so bad so that doctor is full

of it!!!

SHELL

[Guest guest]

I tried that too, all it did was make me sleep day and night. The 'Guy' told my

pain Dr. he had talked to me a few times that wk., changed a few settings from

his end...LIAR!! I NEVER talked to him, couldn't wait to get the thing out. If

it's helping you, I'm happy for you.

My Sister is the same as your Daughter, she makes sure EVERYONE know what a

'Drug Addict' I am. Even her 'Chiropractor' and husband agree with her. I guess

something was mentioned at dinner about how much wine she drinks. Her husband

answered 'At least she's not Addicted to pills like her Sister'. She (Pam)

drinks up to boxes of wine a day, her Liver failed, which she's telling everyone

was 'Jauntice' and making it out like she was born with 'Jauntice', it just

Flared up now...F* & #$ & ^% B & *(+.

For many yrs. she hasn't missed a chance to make me look bad, or do sneaky

things to me. I have no idea why, our parents divorced when I was 9, she was 4,

she doesn't remember how abusive my X-Dad was, cause of her age, many ppl felt

sorry for her. What ever she needed Mom made sure she got, even stealing money

from me. I worked all night, at 14yrs & went to school, even doing her chores.

My back would 'go out' all I could do was crawl, pushing a heavy stepladder to

get up on the counters, she got out of all Mom's 3 days of moving.

There is more, I haven't talked to her in over a yr. after she started copping

me, on how I did things, to make herself appear 'sicker', her husband and son do

it all for her or no one does. She tells everyone, about 'Her terrible

Childhood', Mom died in 12/09, she had all the cards sent to her, telling the

relatives in Chicago she would show them to me Aunt sent me a card...only 1. I

never saw any of them. She also took all the pictures of me as a child, or

shredded many of them. That's one thing I'm most upset about, Mom didn't have

much, but anything I asked for and many things I bought Mom went to her friends.

We hid and watched her go back to get what I asked for.

I only touched on a few things, anyone have an hour to hear more?

Does anyone know why, when they hear a 'story' from someone they believe it,

without asking the other person, their side? You can't defend your self and you

are shunned, forever.

Sorry to write a book, thanks for reading all this crap. You know us 'ADDICTS'

we have a lot to say. Don't you just like to be called a 'DRUG ADDICT', by

people who don't know what your 'problem' is? How many of us had to 'Fight',

take 'Abuse', been called names, saw many-many Drs. listened to some of their

STUPID ADVICE, just to get some Medical help or 'Meds' stronger then

aspirin...so we can have some kind of life. People don't ask us what's wrong,

but start on the 'Story' about what helped Aunt Alice did, walk away thinking

were just a 'Drug Addict', if they stub their toe, the world hears about it.

This 'Addict' has to rest some. Nice to have meet everyone, we'll talk again.

'Marta' sorry I messed up your post, will it came back? I'm sure everyone wishes

they have your support system, I've always ..'Done it all', including fixing the

car, pluming, had the 'Kool-Aid' house. Now that I'm older, it takes me longer,

all my kids are 'Adults', my husband has Cancer, had many operations, still has

one in June. My house is a Dust Bowl, I have an 'Animal Rescue' non-profit in my

town, tripped & shattered my left knee, that didn't heal right causing me to

fall & breaking more bones, more operations. Hearing my Sister 'freak' everyone

out cause I take pills, not saying how much she drinks. I knew where to get

Drugs long ago, why did I become one at my age?

This 'Addict' has to rest some. Hugs to all. Love ya, Pegi

[Guest guest]

So sorry for you Pegi!!!!

Why is it that families hurt us the most.  I have been through it all too and

the one person that hurts me them most that I can't seem to cut loose is my

mom.  She does me the same way with my meds even though she has FM and

congestive heart failure.

She can't seem to realize that mine is worse than hers.  She only has 7 pressure

points and I have all of them.  I have a lot more pain and fatigue than she

does.  I wish I was at her stage so that I could get out and garden all day and

clean my house too.  I have to pick on thing to do while she does 10 things. 

How does she think it makes me feel that she is 20 years older than me and I am

in the shape that I am.

It is frustrating but just deal with the ones that hurt you as little as

possible.

Hugs,

SHELL

Pegi wrote:

My Sister is the same as your Daughter, she makes sure EVERYONE know what a

'Drug Addict' I am. Even her 'Chiropractor' and husband agree with her. I guess

something was mentioned at dinner about how much wine she drinks. Her husband

answered 'At least she's not Addicted to pills like her Sister'.

[Guest guest]

Fear & ignorance (why people make snap judgements against pain sufferers after

one unverifiable story)

Personally, I'd welcome you to post everything you are willing to share, whether

it takes 1 hour or 1 week to read. It is therapeutic to read the struggles of

people who suffer similar ailments and to share your/our own stories.

-Steve M in PA

--- Pegi wrote:

>

> I only touched on a few things, anyone have an hour to hear more?

>

> Does anyone know why, when they hear a 'story' from someone they believe it,

without asking the other person, their side? You can't defend your self and you

are shunned, forever.

[Guest guest]

((((((Pegi))))))))))) I am so sorry to hear about that toxic family. It is sad

that we spoonies (chronicly ill with pain) are so easily labeled " addicts " . I

wonder if they think that someone who has to take insulin or heart pills to stay

alive are addicted to those medications. You can't see blood sugar or heart

problems when you look at someone.

I would just walk away when they start. Maybe you could explain that their

ignorance gives you a headache. <00>.

I know it is very hurtful when it is blood relatives that act so badly. But

don't let them drag you down and suck your energy from you. You need it for

yourself.

Sounds like your sister has addiction problems and her husband is an enabler.

Seems like you are wasting your breathe trying to educate them. They most likely

are using you to avoid dealing with their own issues.

Lots of gentle hugs, Tami

Pegi wrote:

> My Sister is the same as your Daughter, she makes sure EVERYONE know what a

'Drug Addict' I am. Even her 'Chiropractor' and husband agree with her. I guess

something was mentioned at dinner about how much wine she drinks. Her husband

answered 'At least she's not Addicted to pills like her Sister'. She (Pam)

drinks up to boxes of wine a day, her Liver failed, which she's telling everyone

was 'Jaundice' and making it out like she was born with 'Jaundice', it just

Flared up now...F* & #$ & ^% B & *(+.

[Guest guest]

> Shell wrote:

> My husband hears me crying in my sleep all the time and when he wakes me up

and I will be in so much pain. I scared my grandma because I was sleeping on

her couch and when she came into her living room I was crying in my sleep and

when she touched me I jumped and screamed I was hurting so bad so that doctor is

full of it!!!

Shell,

I agree so much and it makes me also wonder where they come up with the things

they say. He was trying to say if I was in a full rem sleep, I would not awaken

but that is not true. Bennie