RE: Some Photos - Jo sicklizard@...

[Guest guest]

Hi Jo:

Your pictures of Roseberry Topping etc. are beautiful. I have looked at

them numerous times and was able to bring them up to full screen to

really enjoy them, as they remind me of my visit to Silbury Hill and

Avebury Circle years ago. It was a very happy time. The area you

visited looks somewhat similar. Where in relation to Avebury do you

live and have you ever been there.

Your photos of EDS hypermobility have been very helpful in that I have

passed on the site address to 2 others possibly affected severely with

EDS so they can make an informed judgement re their own hypermobility.

The photos have also helped me educate distant family. Pictures speak

1000 words when medical descriptions can be so difficult to visualize

and do not bring true understanding. My 17 yr. old dtr. has all of the

same laxity in hands, knees and feet and the leg stuff that you do. It

was amazing for her to see the similarities. How old are you if you

don't mind my asking, as you look very young? If you prefer to e-mail me

off list at bfhalkett@...,, please do so.

I know you are recovering from surgery and here's hoping the necessary

healing is occurring in super quick time. Sounds like those first few

days post-op were pretty rough. It will be interesting to me to see how

long after surgery before you go for physio How long ago were you

diagnosed and how did that come about? Do you also have low B.Pressure

plus dizziness and lightheadedness when standing, sitting too long and

all the nausea that goes with that. We made a trip to the local

emergency last evening as Meaghan had a severe low B.P. episode with

very severe abdominal pain and rigid abdomen. Couldn't bear even a

slight touch to her abdomen. She usually has spinning dizziness, nausea

or throwing up with a low BP episode but not the severe abd. pain. That

aspect was new but it turned out that once the B.P got back up her

abdomen was O.K. thank the Lord. You said you have HEDS with Marfans

features. What Marfan features besides height did the doctors identify?

Meaghan is 5' 1O " tall and arm span is 1 " shorter than her height.

Best regards and great healing, Bernie

OT - some photos for you :-)

At the weekend my wonderful parents tooks me out for the day onto

the gourgeous Dales and Moors that surround the area I live in. I

love being up there and it's a real escape for me...but due to my

upcoming surgery and subsequent time trussed up like an oven ready

turkey, I wont be able to get up there for a while sadly. That's why

my trip on Saturday was so special.

Anyway enough of my waffle, the point of this is that I took some

photographs while I was out there and thought I would share some of

my scenery with you all :-) If you go to the site below and click on

local scenery you can see a little of the area around where I live.

Please feel free to look at the other albums if you would like,

there are some rather goofy ones of yours truly I'm afraid so you've

been warned! I also have my EDS pictures there as well as I use the

link to that album for educating people who don't really understand

what the condition does to me.

Anyway hope you enjoy the pictures and that you get a good giggle

from my ulgy mug! lol

Love and hugs....Jo

xx

My photo albums: http://community.webshots.com/user/sicklizard

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