Re: next steps

[Guest guest]

--- " heldings@... " wrote:

>

> At what point do you tell yourself, this is it and try to live with

the pain?

Dear " heldings " -

First, what is your name? It always seems so much more friendly to

be able to respond to a person, rather than an email address.

Anyway, to answer your question: Everyone's journey is different. I

do think that for some conditions for some people, there is a point

at which you have to accept that you aren't going to be " fixed " and

return to your life just as it was before pain ( " BP. " ) However, I

don't think ANYONE should give up and " live with the pain. "

Just because you've reached the limit of what surgery and

other " fixes " can do for you, doesn't mean that you have to live the

rest of your life with pain. Instead, you need to learn how to " live

with less pain. "

I'm one of those who can't be " fixed. " In fact, surgery made things

much much worse for me. I won't let them open me up again without it

being an emergency. But I kept fighting to make my life the best it

could be despite my health challenges, and that included fighting to

get the best chronic pain management care possible. It's taken a

while, I must admit, to put together a team of doctors and a program

that works for me. But my life is better now than it has been in

years.

Again, there probably will have to be changes. Part of pain

management is learning to work within new limitations, and finding

new ways to live your life with joy. That probably means you'll go

through a grieving process - grief for the life you've left behind.

But remember that change isn't bad or good - change is just change.

Everyone's life changes, all through their lives. This is just one

more change you have to deal with.

In addition to making adjustments in your lifestyle to reduce your

pain, you need to tackle every other possible option. Find a great

pain management doctor, or at least a doctor willing to stick with

you for the long haul and try lots of different modalities for

treating pain.

That may include medications - and usually it requires a " cocktail "

of different kinds of meds to treat different aspects of your pain

and the challenges it causes. It may also include massage, physical

therapy, accupuncture, exercise, meditation, psychological counseling

with a therapist trained in Cognitive Behavioral Therapy and pain

management (not because the pain is " in your head " but because you

have to learn new ways to think in order to cope with daily pain and

sometimes the depression it brings). And that's just a few of the

options.

So, you and your doctors will have to decide if there are any more

treatments or surgeries with the probability of improving your

situation. If not, then start work on finding every option that may

help you live with less pain.

Good luck.

Cheryl in AZ

Moderator

[Guest guest]

Honey, your next step is to go to the Mayo Clinic if that is what you want to

do, but make sure it's what you want.  Never, never, give up.  If you have to go

there then go, and if you have to go somewhere else after that then go there

too.  Just don't give up. 

Giving up is what I have done for the last 2 years. 

I went to the Mayo Clinic and in my case they couldn't help me.  Since then I

have been diagnosed with MS, but because of the type I have the medicines out

there are not for me. 

I've tried the steroids and that didn't work either.  So, I pretty much said,

" okay, I'll just let them treat the pain and live on narcotics for the rest of

my life " .  If I stay in bed for 2 or 3 days at a time then so be it.  That has

pretty much been my philosophy on life for the last 2 years. 

Well, something woke me up and I have finally gotten tired of it.  I'm doing a

lot of research on different helping hospitals with doctors that specialize in

auto-immune diseases and MS.  When I find the one I want, I'm going to go. 

People are not supposed to be like we are and people are not supposed to spend

24/7 in pain.  Somewhere there is someone that can help me and somewhere there

is someone that can help you. 

Keep trying and please don't give up.  Go ahead and do some research on the Mayo

Clinic and see if they have the type of doctor you need to help you.  Please let

me know what you decide and I'll let you know what I end up doing too.

Hugs & Prayers,

Carol  (OK)

> My family is wanting me to go up to Mayo Clinic.  This is the first summer in

31 years that I have not worked but I can't work in this much pain.  I do feel

useless. 

>

[Guest guest]

Thank you Carol, Cheryl, and all the others for your words of encouragement. I

have saved them to read when I get down.

I had my stitches taken out today and the nurse reminded me that the body needs

time to heal. The doctor said he had no problem keeping me on Percocet for as

long as I need it and was willing to up my dosage of Lyrica if I wanted it.

I am far too caught up in our society's need for instant results so I am

learning the lesson of patience and really listening to my body's signals. I

know that I have become a more compassionate human being. Thanks again.

Becky in Illinois