Just For Fun

[Rylanesmom]

I am tired of all the things that now hurt or I can't do...
Yes I want to ride my bike, dive off a diving board, ride a roller coaster!
That is not who I am anymore so I am going to work on finding new things I like.
What do you like that you can do? (or are going to try to do)

I am not artistic but I just signed up with friends for a private paintng class/party byob
I'm sending out the invites so we will see who comes lol.
We will learn how to paint a sunset with birds on a wire...I have been coveting a painting like it or a while.
So my painting may stink...yet it will be fun...with a glass of wine...and the activit won't hurt me lol

[selmaS]

  Glad u r getting out to social events and enjoying them..even if it is just watching,.....I found  for yrs, I preferred to sit and watch,,...it was others that had a hard time believing I was ok with it....their problem not mine,...lol...

Take pics and post them please : )

[Rylanesmom]

The painting event is 1 week from tonight!  I'm excited:)  Next event is brunch and an art gallery.  December event is Japanese steakhouse, crown center (beautiful at Christmas google crown center kansas city), and outdoor ice skating.  I will be watching the ice skating from the side with hot chocolate.  It has gotten to where I can plan events that I can't participate in and still enjoy watching others have fun...it might be easier because it was my idea so then it does not feel like someone is being inconsiderate by not thinking about my limitations...strange.  I have had fun making the invitations on my iMac!  It really is better than a pc lol.

[Viva001]

That's very kind of you to volunteer like that!
I've been "encouraged" by more than 1 person to volunteer.  I dont doubt its value or that it would make me feel useful, but I just can't (which makes me feel even worse).

I would love to see MI (which looks like a porkchop, according to Stephen Colbert, lol).  I grew up between 2 Great Lakes, near the Finger Lakes, little lakes, & all kinds of rivers & streams--Even the Erie Canal--i miss fresh water a lot!

[linnielou232]

It is wonderful to see every one is finding new outlets and activiities that you can do and enjoy.  I went to a football game Fri night 1st HS game in 3 years and even with earplugs in I suffered for 2 days afer because I just can't sit and watch the game.  I sometimes think I'm on the field. LOL....my new excessiorys in my purse are sunglasses and earplugs.  Couldn't go out in public without them.  I also enjoy going to nursing homes and read to people who can no longer read them selves and it is helpful to them and to me.  I have to wear sunglasses due to the lighting, but the reward is awesome.  Love to sew and chochet, but do this in moderation because it does cause flare up.  As most of you above mentioned you love to travel.  My bags are packed LOL....It would be awesome to get us together and have a Chari reunion.  Maybe here in Michigan this summer.  If you like the beach.  We do have an awesome lake, but yeah, Europe or other countries would be awesome too.  LOL...
I would just love to get together will all of you.  We have been on this journey together and it would be nice to be able to see the people who have loved and supported me through all the years of having my chairian family.  Hope everyone has a good day.
Linda :)

[Rylanesmom]

I did have a great time at the walk.  I had a hearing screening as I started thinking about my left ear after my daughters diagnosis.  I haven't been able to use my left ear on the phone in a long time.  Also if I hum it hurts my left ear.  Well guess what little bones in left ear not processing sound right...thanks EDS.  Well glad the right ear works well for now.  I go tomorrow morning for molds of ears to be made for my new earplugs to protect my ears.  They said they are the same kind musicians use and I will still be able to hear yet won't be so overwhelmed in crowds/loud places.  I did also visit the piano bar with friends and used store purchased ear plugs.  Thank you for the reminder:)  I would have walked out...man noise hurts.

[Rylanesmom]

Yikes...preop maybe....but I have eds too.  I pulled my leg up high he other day and could feel he pull in my spine and neck...ouch