It's 2 in the morning, pondering the meaning of life...

[Guest guest]

Oh these 2 am ponderings are profound! It's interesting that at such an

hour, we think about things, which can be helpful or harmful depending upon

your state of mind!

Gordon, remember that this is a syndrome that leads us down the road one day

at a time. We can never know what's about to happen with any degree of

certainty. Do know this though, there is much adjustment that happens and

the process isn't one that happens overnight usually.

Hang in there Gordon, keep open about your feelings and be honest with

yourself about them

Jill

[Guest guest]

Gordon,

I am 46 yrs. young and when I was diagnosed with Ehlers-Danlos Syndrome 3

years ago

the effect was much like being hit square in the face, full-force, with a

14 " cast-iron frying pan. I was emotionally knocked-out!

I was overwhelmed with the thoughts that I would not be able to live my life

as I had planned.

My source of income for 27 years was playing piano professionally. I

haven't played a note in 1 1/2 years. Can't. Too painful. However, human

beings like us (intelligent, talented, and with our 'special gift'.... Eds

..... Can and Do persevere. We are the 'CHAMPIONS'.

Welcome to the Ceda family m8.

Oh, by the way Gordon....you aren't alone Night Owl!

J:O)hn

Re: It's 2 in the morning, pondering the meaning of life...

> Oh these 2 am ponderings are profound! It's interesting that at such an

> hour, we think about things, which can be helpful or harmful depending

upon

> your state of mind!

>

> Gordon, remember that this is a syndrome that leads us down the road one

day

> at a time. We can never know what's about to happen with any degree of

> certainty. Do know this though, there is much adjustment that happens and

> the process isn't one that happens overnight usually.

>

> Hang in there Gordon, keep open about your feelings and be honest with

> yourself about them

>

> Jill

>

>

>

>

>

>

>

[Guest guest]

Dear Gordon,

I too go through these " down " times. Luckily for me they come on quick

and leave quickly as well.

When I was first dx'd the Geneticist told me some very sombering news.

He said I would most likely have to have all my major joints replaced and

would probably be in a wheelchair within 10 years. This is tough information

to handle. But even my docs are amazed at how well I have handled it.

There are a number of things involved that enable me to keep this " good

attitude " going most of the time. I grew up in a family where humor was an

intergrel part - which can't hurt :-) Also I think the fact that I had spent

the prior 7 years in and out of numerous docs offices (stopped counting at

35) and had some major surgeries that failed. This showed me that the docs

don't necessarily know what the heck they are talking about. So right away I

figured it was usless to dwell upon what was told to me - it might happen,

it might not. At least if it did happen it wouldn't happen overnight and it

could be something I could adjust and plan for when and if the time came.

And all this from someone who feels it's very important to be prepared. But

as I stated I would have the time to prepare if the time came.

But still - every now and then :-( It usually will hit me when I

realize there is something I can't do anymore. Or when I look at how I was

last year this time and am hit by how quickly I am deteriorating.

We are allowed these times Gordon. Don't consider yourself a whiner or

compare yourself to others. Let yourself have the time you need. The only

thing to be careful of is having it slip into clinical depression. Otherwise

my vote is to indulge in an occasional wallow. I think it's a necessary part

of being able to cope with our condition.

Hugs,

HEDS, New Jersey, USA

[Guest guest]

Well I feel kind of dumb, now!

The ponderings I have at 2AM are more like this:

If you believe in reincarnation, can you be an organ donor?

At least it keeps my brain active!

Joy