Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS.


advertisement
Reply
 
Thread Tools Display Modes
Old 11-17-2010, 07:31 PM #1
craftyRCC craftyRCC is offline
Member
 
Join Date: Sep 2010
Location: Central NJ, USA
Posts: 123
10 yr Member
craftyRCC craftyRCC is offline
Member
 
Join Date: Sep 2010
Location: Central NJ, USA
Posts: 123
10 yr Member
Question Off Topic, Facebook, Hobbies, ETC?

Unsure if this is the place for this topic or not?

What do you like to do when your feeling pretty good or keep from going insane? I know a lot of people frequent facebook or have other hobbies and interests. I'd really like to here what else we all have in common besides MG!

I'm an avid crocheter and reader, great cook and baker (so I'm told), love scrapbooking, papercrafting and working in my garden. Sometimes I blog about my crochet and papercrafting projects, although not as frequently as I should. I also enjoy peeking in on facebook to check up on what "friends" are doing. And I try to never miss Jeopardy!!!

Thanks for sharing,
Rachel
__________________
You never know how STRONG you are, until being STRONG is the only choice you have!
craftyRCC is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
DesertFlower (11-18-2010)

advertisement
Old 11-17-2010, 07:42 PM #2
AnnieB3 AnnieB3 is offline
Grand Magnate
 
Join Date: Feb 2009
Posts: 3,306
15 yr Member
AnnieB3 AnnieB3 is offline
Grand Magnate
 
Join Date: Feb 2009
Posts: 3,306
15 yr Member
Default

Rachel, Connie started a post like this one, which is a very good idea, but no one really responded. Maybe no one feels like sharing? I hope not.

I write and draw (on the computer), which are the only antidepressants I can take. I stay the heck away from all stress, including the news. Anything creative gets me feeling good. I wish I had time or energy to devote to volunteering again but it's simply not possible anymore.

How do you cook/bake with MG? I used to but it's so hard now and I'm very limited due to celiac disease and no dairy.

Annie
AnnieB3 is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
craftyRCC (11-19-2010)
Old 11-17-2010, 08:18 PM #3
shalynn shalynn is offline
Member
 
Join Date: Feb 2008
Location: Lower Ohio Valley
Posts: 118
15 yr Member
shalynn shalynn is offline
Member
 
Join Date: Feb 2008
Location: Lower Ohio Valley
Posts: 118
15 yr Member
Default

Rachel,

I like to read a lot. I'm hoping I get that Kindle I've been hinting about for Christmas. Sometimes books are too hard for me to hold up for very long. I like to cook and bake too. My husband helps a lot with this. I make some awesome Choclate chip pumpkin muffins! A few weeks ago he said he'd help me make them. I think now he sees how they aren't so easy to make, even for someone healthy like him.

I like to get on facebook too, although I'm not into any of the games. I just like to read the updates from all of the groups and pages I subscribe to, and of course keep up with my family and friends.

I have my fav TV shows (probably too many ) too. I have a DVR in our bedroom and I usually have quite a few shows recorded on it for days when I have to stay in bed.

I like to decorate and garden (when I have the money and am able). I have done some writing in the past. Mostly non fiction.

I enjoy spending time with our kids. They are growing up way too fast. Our youngest will be 18 in Februrary (our other two are nearly 21 and 22)!

I've always been an on the go person, but honestly, I'm really more of a home body. I guess it's a good thing that I was never very athletic because I'm sure this would be much harder to deal with.

I guess I lead a pretty boring life, but I'm happy and I guess that's what counts.
shalynn is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
craftyRCC (11-19-2010)
Old 11-18-2010, 12:07 AM #4
Annie59 Annie59 is offline
Member
 
Join Date: Jul 2010
Location: Live in upper midwest
Posts: 439
10 yr Member
Annie59 Annie59 is offline
Member
 
Join Date: Jul 2010
Location: Live in upper midwest
Posts: 439
10 yr Member
Default

What program do you use to draw AnnieB3? I havent drawn on a computer since I left Square D where I did illustrations for manuals and did some art for labeling. I had way better computer then of course on their dime.

I used to read but eyes too messed up. I do miss my jewerly and stone work/exploring. To make up for this I look at the pictures in design mags. If I have an idea I sketch it. Often I think in terms of what my youngest daughter who is 33 would wear and the ideas come.

I love love being with my 5 grandkids but that has been cut down on in this last many months since March flare. My oldest granddaughter can and asks to come over since she is old enough to do alot on her own.

I am kinda stuck with TV more than I care but a good show does interest me. I like scifi and things like The Closer. I like Meteorite Men, American Picker and nature shows. I wish there was a channel that had nature 24/7. It always gives me this wave of letting go.

Annie59



Quote:
Originally Posted by shalynn View Post
Rachel,

I like to read a lot. I'm hoping I get that Kindle I've been hinting about for Christmas. Sometimes books are too hard for me to hold up for very long. I like to cook and bake too. My husband helps a lot with this. I make some awesome Choclate chip pumpkin muffins! A few weeks ago he said he'd help me make them. I think now he sees how they aren't so easy to make, even for someone healthy like him.

I like to get on facebook too, although I'm not into any of the games. I just like to read the updates from all of the groups and pages I subscribe to, and of course keep up with my family and friends.

I have my fav TV shows (probably too many ) too. I have a DVR in our bedroom and I usually have quite a few shows recorded on it for days when I have to stay in bed.

I like to decorate and garden (when I have the money and am able). I have done some writing in the past. Mostly non fiction.

I enjoy spending time with our kids. They are growing up way too fast. Our youngest will be 18 in Februrary (our other two are nearly 21 and 22)!

I've always been an on the go person, but honestly, I'm really more of a home body. I guess it's a good thing that I was never very athletic because I'm sure this would be much harder to deal with.

I guess I lead a pretty boring life, but I'm happy and I guess that's what counts.
Annie59 is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
craftyRCC (11-19-2010)
Old 11-18-2010, 12:53 AM #5
suev suev is offline
Member
 
Join Date: Jun 2009
Location: Texas
Posts: 748
10 yr Member
suev suev is offline
Member
 
Join Date: Jun 2009
Location: Texas
Posts: 748
10 yr Member
Default

My hobbies are golf, gardening (flowers and herbs mostly), and playing the stock market! I am fascinated by what moves the markets (real and imagined) and find it wonderfully entertaining!
suev is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
craftyRCC (11-19-2010)
Old 11-18-2010, 01:33 PM #6
roguepuppet roguepuppet is offline
Junior Member
 
Join Date: Nov 2010
Location: indiana
Posts: 45
10 yr Member
roguepuppet roguepuppet is offline
Junior Member
 
Join Date: Nov 2010
Location: indiana
Posts: 45
10 yr Member
Default

in reference to baking and celiac, I have a teen daughter who is vegan and we still bake. we use an egg subtitute and soy milk. Baked goods do not brown quite the same, but light, fluffy and tasty. We make cakes, muffins, pancakes, cookies, etc.. this way. let me know if you want more info. Organic sugar helps too.
roguepuppet is offline   Reply With QuoteReply With Quote
Old 11-18-2010, 01:37 PM #7
DesertFlower's Avatar
DesertFlower DesertFlower is offline
Member
 
Join Date: Aug 2009
Location: Tucson, AZ
Posts: 466
10 yr Member
DesertFlower DesertFlower is offline
Member
DesertFlower's Avatar
 
Join Date: Aug 2009
Location: Tucson, AZ
Posts: 466
10 yr Member
Smile

Great topic to cheer us up.

I like writing and photography...I've been writing lots of poetry since I got MG and I am planning to self publish them as a book, for fun not for money.

I love gardening, but haven't been able to keep up with the work due to MG...luckily my garden is a natural garden and it survives mostly on its own, even more so lately. When I feel good I go outside and play around. Mostly I just take pictures, sit in the sunshine and watch the flowers and wildlife. My garden inspires me.

I love hiking and on the rare day that I feel good enough I go for a walk out in the desert.

I like to draw but my hands get tired so quickly...I've been playing around with computer generated art.

I recently found a free program used to make programs. I am a bit of a computer geek, so I am starting to make programs. I made one that generates random poetry. This is the most recent poem (that makes sense):

The edge of the world
awakened ancient beings call
I dance on the shivering abyss of enlightenment


If I feel extra good, I volunteer, but I've only been doing this about twice a year. Such wonderful people, I miss this activity greatly.

I read a lot when my eyes are functioning...I have books laying everywhere, I love to learn.

I like to make soup! I don't like cooking in general but soup is fun.


That felt good, there are still good things in life, even with MG. Glad to hear others enjoying life as well.
__________________

.
DesertFlower is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
craftyRCC (11-19-2010)
Old 11-18-2010, 01:41 PM #8
roguepuppet roguepuppet is offline
Junior Member
 
Join Date: Nov 2010
Location: indiana
Posts: 45
10 yr Member
roguepuppet roguepuppet is offline
Junior Member
 
Join Date: Nov 2010
Location: indiana
Posts: 45
10 yr Member
Wink hobbies

So nice to meet you all. I am a bit of a geek, so I am a gadget freak. I love my gardens.. especially veggie gardens in the summer. This was the first summer i saw impact, and it was not as bad as now, so waiting to see what happens there. However, my husband and kids all help with the garden, freezing, canning and drying, so that will likely sustain for a while. I love to read, but recently blurred vision has stifled that. I am sustaining on audio books. I am into science and scifi on TV, and watch a lot of video podcasts. I can watch either on computer or on the TVvia my roku box. I love music and dancing. Obviously dancing is taking a hit about now. I like photography, but just have a point and shoot camera. I am active in social media ( not gaming) so let me know if you want to connect.
Nan
roguepuppet is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
craftyRCC (11-19-2010)
Old 11-18-2010, 01:44 PM #9
roguepuppet roguepuppet is offline
Junior Member
 
Join Date: Nov 2010
Location: indiana
Posts: 45
10 yr Member
roguepuppet roguepuppet is offline
Junior Member
 
Join Date: Nov 2010
Location: indiana
Posts: 45
10 yr Member
Default

desertflower, if you are going to publish for fun and not money, I would love to be able to read your poetry online.. a blog or website would rock. Let us know if you set one up. I loved the poem you shared.. thanks!
roguepuppet is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
craftyRCC (11-19-2010)
Old 11-18-2010, 01:52 PM #10
Stellatum Stellatum is offline
Senior Member
 
Join Date: Feb 2010
Posts: 1,215
10 yr Member
Stellatum Stellatum is offline
Senior Member
 
Join Date: Feb 2010
Posts: 1,215
10 yr Member
Default

I like to play music (mostly Irish traditional) with my family. None of us are any good, but the playing's the joy. I've also been studying American Sign Language along with my husband for a few years. I can't manage classes any more (going out in the evening? I don't think so!) but we are proficient enough to have conversations. Sometimes we go out for a silent supper.

But the truth is, these things have lately ground to a halt. It's not really that I'm too weak to do them (though I had to give up the fiddle because of muscle weakness); it's that I'm just tired all the time, and never have the energy to feel like doing stuff. This rut I'm in is brutal, brutal, brutal. I thought maybe it was depression causing the lack of creative energy, but I'm pretty sure it's the other way around.

General fatigue is a real part of this disease. I'm getting done what need to be done--the kids' education, basic household chores, even making some money working from home--but I've cut out all the things that were fun and creative. I don't know what to do about that. As a homeschooler, my creative hobbies are more than just hobbies--they're inspiration to the kids.

So, what to do? Force myself to break out the mandolin and the telescope and the cookbook? Drag myself to ASL classes? I just don't know. It's like a Catch-22: you need energy to get yourself energized.

Abby
Stellatum is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
craftyRCC (11-19-2010)
Reply


Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off


Similar Threads
Thread Thread Starter Forum Replies Last Post
Off topic - Facebook friends! erinhermes Myasthenia Gravis 14 09-27-2009 04:11 PM
Radio Hobbies Brokenfriend Computers and Technology 6 12-12-2008 02:37 PM
when I feel good - I take photos - do youall have any hobbies? lou_lou Parkinson's Disease 17 10-30-2008 03:58 PM
Books - On topic and off topic Lara Tourette Syndrome 45 09-06-2007 04:53 PM
What hobbies have you been able to do with RSD/ CRPS?? InHisHands Reflex Sympathetic Dystrophy (RSD and CRPS) 36 02-25-2007 08:31 PM


All times are GMT -5. The time now is 07:53 AM.

Powered by vBulletin • Copyright ©2000 - 2024, Jelsoft Enterprises Ltd.

vBulletin Optimisation provided by vB Optimise v2.7.1 (Lite) - vBulletin Mods & Addons Copyright © 2024 DragonByte Technologies Ltd.
 

NeuroTalk Forums

Helping support those with neurological and related conditions.

 

The material on this site is for informational purposes only,
and is not a substitute for medical advice, diagnosis or treatment
provided by a qualified health care provider.


Always consult your doctor before trying anything you read here.