Re: MRI results/Joy

[Guest guest]

Hi Joy...

What to say except I (we all) share your pain ~ even when we are lucky (as I am)

to have a wonderful partner and daugther who are very understanding and caring,

it is a difficult thing to live with. The seemingly endlessness of the pain and

the TIREDNESS can be so overwhelming and limiting ~ even if it is just in MY

mind and body, not theirs.

It is simply amazing how much energy it takes (sometimes more than I have) to

great the day with the attitude of finding joy in the simple and good things of

each moment. Sounds silly, but I work very hard (and yes, often fail) to take

note of what I am given each day ~ the beautiful sunrise (well, okay, so I

probably end up sleeping through most of them since I was busy enjoying the

early morning hours of a restless night), but the sun reflected on the dew of

the grass, the autumn colors slowly drifting downward, my daughter's laugh, my

dog's fierce loyalty ~ well, you get the picture. For me, it helps get through

the tough times and I'd rather put the energy into trying at that and even

failing than sometime else (well, maybe a glass of wine every once in awhile ~

boy, do I miss that!!)

Best Wishes,

Joy Hoormann <jhoorm01@...> wrote:

Well, I got good results on my MRI. The clavicular joint head showed

improvement since the last MRI in 03. So why does it still hurt so dang

bad?? I have pain in shoulder, clavicle area and sometimes up into my neck.

Along with my feet being swollen and hurting.

My husband, said, She she says your better better....big sigh.

I think that is what hurts the most is that he doesn't understand how depressing

it is too hurt so bad for so long.

Joy

[Guest guest]

Dear Joy, I know what you mean when the X-ray comes back normal. It's not

that you want to be really disabled, but you want something to verify all

the pain you are feeling or at least be the explanation of it all. I've

come to the conclusion that X-rays aren't as detailed as everyone believes.

They don't really show any soft tissue damage or problems there, so I think

unless the bone is evolved, you are patted on the head and told everything

is fine. Let's face it when we are in pain,we know we aren't fine. Maybe

one day they will have a machine that will truly show what is wrong with

people the first time they take a test. I'm sure though with the pain all

of go through with PA, we might break a machine capable of doing something

like that.

Have you talked over some of the chronic pain tips I've posted on the site

before? I think they helped my family understand what I was going through

and said it in a way that isn't insulting or complaining either. I'll go

ahead and post them since so many people have asked about them again.

Please forgive me if you have read these a 100 times, but they really do

seem to help people and explain the way most of us feel day to day. Let

me know if they help Joy. Hang in there. You aren't alone, that's for

sure. Love, Fran

Tips for Dealing With People in Pain

1. People with chronic pain seem unreliable (we can't count on ourselves).

When feeling better we promise things (and mean it); when in serious pain,

we may not even show up. Pain people need the " rubber time " (flexible) found

in South Pacific countries and many aboriginal cultures.

2. An action or situation may result in pain several hours later, or even

the next day. Delayed pain is confusing to people who have never experienced

it.

3. Pain can inhibit listening and other communication skills. It's like

having someone shouting at you, or trying to talk with a fire alarm going

off in the room. The effect of pain on the mind can seem like attention

deficit disorder. So you may have to repeat a request, or write things down

for a person with chronic pain. Don't take it personally, or think that they

are stupid.

4. The senses can overload while in pain. For example, noises that wouldn't

normally bother you may seem too loud or glaring.

5. Patience may seem short. We can't wait in a long line; can't wait for a

long, drawn out conversation.

6. Don't always ask " How are you? " unless you are genuinely prepared to

listen - it just points attention inward.

7. Pain can sometimes trigger psychological disabilities (usually very

temporary). When in pain, a small task, like hanging out the laundry, can

seem like a huge wall, too high to climb over. An hour later the same job

may be quite okay. It is sane to be depressed occasionally when you hurt.

8. Pain can come on fairly quickly and unexpectedly. Pain sometimes abates

after a short rest. Chronic pain people appear to arrive and fade

unpredictably to others.

9. Knowing where a refuge is, such as a couch, a bed, or a comfortable

chair, is as important as knowing where a bathroom is. A visit is much more

enjoyable if the chronic pain person knows there is a refuge if needed. A

person with chronic pain may not want to go somewhere that has no refuge

(e.g. no place to sit or lie down).

10. Small acts of kindness can seem like huge acts of mercy to a person in

pain. Your offer of a pillow or a cup of tea can be a really big thing to a

person who is feeling temporarily helpless in the face of encroaching pain.

11. Not all pain is easy to locate or describe. Sometimes there is a

body-wide feeling of discomfort, with hard to describe pains in the entire

back, or in both legs, but not in one particular spot you can point to. Our

vocabulary for pain is very limited, compared to the body's ability to feel

varieties of discomfort.

12. We may not have a good " reason " for the pain. Medical science is still

limited in its understanding of pain. Many people have pain that is not yet

classified by doctors as an officially recognized " disease " . That does not

reduce the pain; it only reduces our ability to give it a label, and to have

you believe us

[Guest guest]

Hi ,

Well if we had an E-mail of the week, yours would win it this week. That

was a really good one.

Yes it is difficult for your family to fully understand what is happening

inside your body and mind no matter how loving and caring they are.

You wrote:

It is simply amazing how much energy it takes (sometimes more than I have)

to great the day with the attitude of finding joy in the simple and good things

of each moment. Sounds silly, but I work very hard (and yes, often fail)

to take note of what I am given each day ~ the beautiful sunrise (well, okay,

so I probably end up sleeping through most of them since I was busy enjoying

the early morning hours of a restless night), but the sun reflected on the dew

of the grass, the autumn colors slowly drifting downward, my daughter's

laugh, my dog's fierce loyalty ~ well, you get the picture. For me, it helps

get

through the tough times and I'd rather put the energy into trying at that

and even failing than sometime else (well, maybe a glass of wine every once in

awhile ~ boy, do I miss that!!)