Re: Acceptance.. Re: Re: Re: Morphine/Michellle/Lana

[Guest guest]

Laxity wrote:

Awhile ago on the list some wise person talked

about how with EDS there is chronic loss, so we are grieving a different loss

every day. That is the issue that I grapple with most these days.

~~~

I couldn't agree more with this statement. I was diagnosed over 24 years ago at

the age of 29. The early years were losses over the ability to work, joints all

over that were getting looser-leading to loss of physical abilities. The latter

entered into nearly every area of my life.

From that time until I was 40-I had 20 surgeries.

Then amazingly came 12 years of no surgeries. It was like magic! My joints no

longer seemed to loosen at will

and I was at a point I felt I'd really adjusted to living with EDS.

THEN came my 50's! The loosening began again....now in joints that weren't so

loose before-- mainly the small joints--fingers, hand bones, toes and foot

bones--even my ankles and wrists.. When asked why this was again happening, my

rheumatologist called it another " Surgical Cycle " ,as he had no idea why this

would happen.

When we moved to this area 2 years ago, I knew I needed just the one thumb

surgery done. But after the first couple of hand surgeon visits, he said I'd be

coming in there for a long time to come.

Then when I learned last Sept I'd need a total knee replacement (TKR), it really

was low point...and I took it very hard. A good long time went by before I came

to acceptance. Plus it was during that time I was learning to accept the

increasing laxity and arthritis in my small joints. Because up until we move

moved here(2 yrs ago), I had no clue I even had arthritis!!! As my joints don't

hurt until the cartilage is gone, or a fraction away from being nearly

completely gone.

It spares me lots of pain, but it sure surprises me to learn about each one.

This past year has been rough in dealing with all the changes happening so

rapidly. Plus the frequency of the surgeries is so tiring.

I'm sick to death of PT, and dr. visits. Plus now I'm again running a very low

blood sodium....hope the doc decides to look up the adverse effects of

tegretol---he might just learn that " dilutional hyponatremia " is one of

them.....

If he doesn't, I'll make sure he looks does!

If it's not one thing it's another.... .

Some days when I read the list, I could sit and cry over all the physical and

emotional ( usually cause of the docs ) suffering that we have-----and no one

really understands except us that live with it.

I'm so blessed to have found this special group of wonderful, compassionate

people who really do care so much.

It sure helps while going through all these changes.

But reading of what others face, I realize how much better off I am than soooo

many others.

Thanks so much to all of you for your support and helping me along the daily

walk of acceptance. I deeply appreciate it.

Gentle hugs to all of you,

CindyH

Wisc.

[Guest guest]

Cindy, I'll go along with ALL of this!!! I'm really sorry I haven't been

online the last couple days much - not feeling too well - have a cold, and

neck and back are acting up (course right after I quite PT!) and hubby has

been using the computer at home lately trying to get something to work for

us, and of course, I haven't been able to get on at work! UGH! That's my

gripe for the day - please forgive? :-)

Anyway, I wanted to say that especially when I'm not feeling very good

myself, I really hurt more for others too - I hurt in my heart

(figuratively) for all of us, and there are so many that have it so, so much

worse than I do. When I start thinking of THAT, it makes my pain much more

bearable - SO, as Cindy said so very well, THANK YOU EVERYONE FOR

EVERYTHING!

Much love,

Lana

Re: Acceptance.. Re: Re: Re: Morphine/Michellle/Lana

I'm sick to death of PT, and dr. visits. If it's not one thing it's

another.... .

Some days when I read the list, I could sit and cry over all the physical

and emotional ( usually cause of the docs ) suffering that we have-----and

no one really understands except us that live with it.

I'm so blessed to have found this special group of wonderful, compassionate

people who really do care so much.

It sure helps while going through all these changes.

But reading of what others face, I realize how much better off I am than

soooo many others.

Thanks so much to all of you for your support and helping me along the daily

walk of acceptance. I deeply appreciate it.

Gentle hugs to all of you,

CindyH

Wisc.

To learn more about EDS, visit our website: http://www.ehlersdanlos.ca