NeuroTalk Support Groups

NeuroTalk Support Groups (https://www.neurotalk.org/)
-   Myasthenia Gravis (https://www.neurotalk.org/myasthenia-gravis/)
-   -   Off Topic, Facebook, Hobbies, ETC? (https://www.neurotalk.org/myasthenia-gravis/138718-topic-facebook-hobbies-etc.html)

craftyRCC 11-17-2010 07:31 PM

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:)

AnnieB3 11-17-2010 07:42 PM

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

shalynn 11-17-2010 08:18 PM

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 11-18-2010 12:07 AM

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 (Post 717208)
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. :)


suev 11-18-2010 12:53 AM

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!

roguepuppet 11-18-2010 01:33 PM

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.

DesertFlower 11-18-2010 01:37 PM

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.:grouphug:

roguepuppet 11-18-2010 01:41 PM

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:grouphug:

roguepuppet 11-18-2010 01:44 PM

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!

Stellatum 11-18-2010 01:52 PM

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

DesertFlower 11-19-2010 10:22 AM

Abby, I know what you mean about the energy...I have so many things I want to do but can't so I wait until I can. Have you tried B12 vitamins? I am so happy to be taking B12, it has helped my energy level and even helped somewhat with the depression. Of course, it doesn't do anything for my weakness, at least nothing obvious, but it is wonderful to have energy. At least I can have more waking hours, most of which has been spent in front of my computer since this takes the least muscle effort.

I, too, have times when I do nothing because I don't have the energy and this causes depression...

craftyRCC 11-19-2010 02:56 PM

Thanks For Sharing!
 
Thanks to all of you for sharing a bit of yourselves with the message board:hug:

We share many of the same interests... it seems that we all like to read, but because of this crazy MG thing some of us have found other ways to enjoy it... some of have switched to audio books, some have thought about trying e-readers and others continue to do it the old fashioned way when our eyes will let us. We inspire others with our love of crafts, poems and writing. We find great joy in spending time with our families and friends. We reach out to others through social networking sites.

AnnieB3, Betty Crocker has many gluten free products on the market now, they include cake and dessert mixes as well as Bisquick baking mix.

Shalynn, If you share recipes I'd love to try your muffins...you can't go wrong with pumpkin & chocolate chips!

Annie59, A road trip with the American Pickers sounds like fun...I'm game if you are:wink:

suev, Not one for the stock market, the whole thing seems like a mystery to me:rolleyes:...although I think I'm finally figuring it out!! I do follow the gold market though

DesertFlower, I love your beautiful city:Heart:. I had the chance to visit AZ some years back. We saw "A Mountain", the St. Xavier del Bac Mission, and spent the day hiking through the Sonoran Desert.

roguepuppet "Nan" Love the Hoosier State... I have family that has lived in Fort Wayne for so long I forget they ever lived in NJ. Canning and preserving are a favorite of mine...the weather was not good for my garden this year:( I had to buy tomatoes to put up for spaghetti sauce:rolleyes:

Stellatum"Abby", What can I say... I love traditional Irish music :nopity: I think it's great you know ASL...I know a few signs but could never hold a conversation!

If anyone is interested in becoming friends on facebook PM me. Also, if you would like to see some of my crocheting and scrapbook stuff stop by my blog www.thiscraftersyarn.blogspot.com/

Thanks again for sharing:)
Rachel

redtail 11-19-2010 06:11 PM

I love cooking, especially cakes biscuits etc, which I usually give away, as if I ate them all my self I would put on too much weight.

I love gardening and have just planted a whole heap of herb seeds out in my little back garden. I thought herbs would be easy to look after, so now my garden is growing nicely. I have established garlic chives, sage, rosemary, oregano, and have planted basil, fenugreek, clumping evergreen challots, dill, tarragon, thai chillis, radish, zucchini cucumbers and beetroot can't wait til I can start using them...........

craftyRCC 11-22-2010 05:19 PM

Kate, I try to share my goodies with others as well. I've lost quite a bit of weight in the last two years. I can't help but eat a small piece now and then. I want to lose more just in case I have to go on Prednisone, but also because I can still afford to loss a bit more.

My garden didn't do so well this year. No matter what I planted I had to share it with all my backyard animal friends!! I even had to but tomatoes to can for sauce this year. I hope next years crop is more successful.

Thanks for sharing,
Rachel

AnnieB3 11-28-2010 07:16 PM

Rach, I live in the state where General Mills makes their "so-called" GF products. I'm one of those celiacs who gets sick on even the FDA's acceptable parts per million of gluten. I simply eat mainly whole foods. I'll get around to making my own bread sooner or later but it's a lot of work.

It's been fun reading about everyone's interests. Thanks for starting this thread.

Annie

craftyRCC 11-28-2010 09:50 PM

Annie, I think there is always a chance of cross contamination in any food processing facility. There are so few that don't use eggs, dairy, tree nuts, or wheat type products somewhere in the processing. I can't imagine how hard it must be to be so sensitive to foods. I get hives from all kinds of crazy things, synthetic fabric, dust, the powder in latex gloves, and even the sun. But I can eat most anything you put in front of me!!

Glad your enjoying the thread, I was hoping more people would respond. I know even the computer can be difficult to manage some days, and some folks just feel comfortable sharing. For the longest time I was a lurker, even on other types of forums but I figured what have I go to lose. The most I can possibly due is bore someone to death with an extremely long post about nothing. No one gets to see who I am, the most they can do is raise an eyebrow and say to themselves, OH NO!!!!!, there she goes again kinda like now!!

Well enough said for now, have a great evening!
Rachel


All times are GMT -5. The time now is 12:39 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.