Chiari Malformation Community
Just For Fun
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This patient support community is for discussions relating to Chiari Malformation and Living with Chiari Malformation.

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Just For Fun

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
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This is something I'm struggling with too! My fiance' and I used to hunt together, but as I'm only 5 months post-op, I can't shoot a gun yet. We have been looking at crossbows as they are quiet and do not kick back (well, just a little!) so we can enjoy something together again! We used to spear fish and I can longer handle the boat ride. I was trying to find a way to adjust it so that we don't have to sell the boat, so we now have some marie bean bag chairs that take the impact out of the ride! I'm not ready to try them out just yet!
Rhea
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  Hi Mel.....acceptance the final stage...yeah u made it....lol... we all get here at one point or another....

I know u saw my paintings, and crochet work and all and I love doing all of it, my problem is doing it all alone...no one around here to do it with.....

My issue is also this house , where it is located I can not go out, or open windows...so I am in a closed up box..yuck

If I could move to where I could spend more time outside I would be happier doing the things I love, painting, sewing, crocheting and then I may even have a garden again...elevated this time tho...lol...no bending : )
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:) I haven't knitted in a few years... Might have to revisit that one
Yeah it's harder than one would think taking care of the flowers...I have to convince my kids to climb around the koi pond because my EDS just done not cooperate with trying to climb from rock to rock.

Selma move down the street from me!  
They haven't told me not to drive....yet lol
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  I have been on a do not drive for 3 yrs bcuz of my drop attacks, and depth perception issues and my night vision is really bad, I can not stand the lights...never could but that is worse now....and bcuz I have the TC and disk issue, not sure if /when I have more surgery that would change .
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Hello RheaAnn! I am new on this forum. I am so glad to have found others that can relate to what I am going through. My friends try to understand, but they just don't get it. I have been dealing with the same issues. I would love to do all those things too. It has been quite a challenge to find things to do. I love to karaoke, but don't like the bars. I have been thinking about learning how to scrapbook. I wish you the best. Erica
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I love the painting with a byob!  What a fun idea. I have always wanted to paint, I have 10 family members that either draw or paint and I always think how great it would be to decorate my walls with my own art...stick figures arent appreiciated like I thought they would be!  But the byob would be scary for me...two sips in and I'd be calling a cab!  Maybe I can find something like this around here, desperately need to find something to do!
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  Well I hope u all post pics of ur art so we can all see what u r doing.
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Wow painting is an awesome idea.  We do have to alter our lives some of us after having surgery.  I still crochet, and I have a rug and sit on my behind to do my gardening.  It takes a little more time, but I don't know what I would do if I couldn't dig in the dirt LOL.....I love to sew too, but I find bending my headdown to long brings on a HA so sewing is done in moderation.  Have fun with the painting glass and also watch out for the wine.  You birds will probably be on the fence at the end of your painting LOL...Enjoy.  Happy you found something you will enjoy and with friends.
Linda :)
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I have no art skills...vision is weird...wine will complicate it but I'm still excited haha
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I wish I would have planned this outing first!  This month I chose a dueling piano bar and I'm nervous the noise may give me problems...
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  Hey Mel......have u ever seen a Monet...it is beautiful, but looks like  a blind person or partially blind  person may have painted it.... u can do it...lol...
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Haha Selma,  I was just going to say the same thing, lol.

Folk art painting really isn't that hard. Your lack of skill, weird vision and wine is just going to make it all so much more interesting!  Have fun!
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:) haha thanks guys
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Erica, I think many people are like us in that they want to continue to do the things they love. Without those things, it's almost like a piece of yourself- your former self- has gone. I have gone to some lengths to try to do the things that I really love and do not want to give up. I may be in denial or I may be stubborn!

I went to the ENT office and had some ear molds done (the kind that they do for children with PE tubes). So now I can go to dinner, the movies and anywhere that is noisy. You can hear through them, but it takes the intensity out!

Mel- You may want to try some. Drug stores sell the foam kinds that you just roll up and stick in your ears. Just a thought! :)
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I have used plugs for indoor soccer:) Thank you for the reminder I may take some with me.
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You are so right. I don't want to lose myself, because of my disorder. I know my limitations and try to stay within my limits. I don't like hurting, but I want to enjoy life. You must be just as stubborn as I am...lol! :)
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To clarify I as well did not want to give up many things.  I wanted to sky dive too never got to.  Some things are to dangerous post chiari surgery and some things because of my EDS and chiari my body can no longer do.  I have found pushing through the pain causes horrible results...  So stubborn as I am (went back to work FT at 8 weeks post op) I have to accept the new me too.  
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how did it go Mel?  Will you post pics of your painting?  
Jiggle
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Painting is in October...piano bar next week:)
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Things I plan to do before I'm 40: (I'm almost 36)
Skydive Or bungee jump (chiari be darned)
Travel to at least one other continent.
Learn to play the cello.
Redo my kitchen.
Own a brand new car.
Take a full year off from work and enjoy my time.
Have a tattoo removed.
Get a new tattoo.
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Oh lazy I want a tattoo removed too!  But that's not fun lol.  I'm post op and was told no...also have empheseyma from EDS so plminary dr said no...to skydiving.  I would be scared of the jerk on the bungee cord but it sounds like we share a desire for adventure.  Ah travel :) where too?
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Rylanesmom- I want to go just about everywhere. I want to see Ireland, Italy, Tanzania, Fiji, Mt Fuji, the Caribbean, Belize, Peru.... anywhere with an ancient history or a natural adventure calls to me. I've never made it off this continent.

I promised my son, now age 7, that I'd take him skydiving. I know he can't for another ten years or so, but I'm going to keep my promise.
I gave up rollercoasters a long time ago, but I made one exception for him this summer. The newer rides are a hundred times smoother than all the old ones. I didn't even have a headache that day.that in itself is unusual..
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Yeah my kids and I lived at the amusement park last summer but I have had surgery and NS said no...it's the force and speed too not just the jerky.  I think I will eventually do Hot Air balloon instead of skydive.  The only time I went overseas was Saint Lucia it was amazing!  I would love to travel too.
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  Ok ladies if u r going to talk travel I want in on the convo as I also love travel...I have been to a few places...but have a few more I would love to see.....

Peru is one...Ireland another....and I would love to go back to a few of the places I already was....

But I never had the inclination to sky dive....lol....I do like being out on a boat whale watching,....that is adventurous for me : P
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Oh Selma Alaska in the Summer would be nice :)
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  Hmmmm yes that could be nice.....very rustic...and I like camping.
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Mmmmmm I like camping too:) hot dogs and s'mores on a campfire with a hoodie and my uggs on....mentally m so there!
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  Mmmmm me too...lol....I love sitting around the campfire everything smells like smoke....sigh....so relaxing...
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This one may not be for every one, but residents at most nursing homes love when folks come in and read to them. When the home allows for it many a residents Love to have the Bible and or Bible Stories read to them.

It can be difficult when you have a HA and other pains. But the best pain medicine there in existence is your mind. The more we find ways to focus away from the pain, the more pleasure we find in life. Crafts, computers or other hobbies work to help change that focus. But nothing changes our focus and helps us to deal with our own pain like helping those who are worse off than we are. Their appreciation turns into your pain relieving joy.

Like I said, it's not for everyone... But the idea 'is' for everyone. With 50+ years of chronic pain I can tell you that 'mental strength and focus' is the key. Not always enough on its own but it's surprising how much it helps.

JMO and thoughts
CW
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I ride my horses! I know I am not supposed to! But they are Tennessee Walkers and have the smoothest walk! My baby is so gentle! I don't get on our two babies that can get a little more rambunctious and want to run! Those are for DH! Lol! we have two that their fav speed is slow mode when mommy and little man ride! :) They know! Some of the things I do now when I am having "one of those days" are my mom and I do embroidery, we have an awesome machine and computer program and can take any picture and use it to embroidery on whatever we want! We also do stained glass windows, and all kinds of hanging items to put in windows. I make jewelry, and I love to smock! I have learned Heirloom sewing and between the smocking, Heirloom sewing and quilting I have a ball making baby stuff for friends and family!! :) The embroidery too! Lol! I make wreaths and garland for Christmas and other events, and I am an amateur photographer! Heavy emphasis on the amateur! Lol! I do Engagement pics and pics for Christmas and Anniversary's, sports or whatever. I try to find things I can do when my hands and body are willing and able! Lol! We have even learned the art of basket weaving and have made some beautiful baskets! I found with me it was about finding something I could do to help take my mind off of my pain and yet keep my mind engaged in something fun and learning something new and making something beautiful come out of the pain I am in! :) Some of the items take a while as I have to go back to them after taking breaks as sitting for long periods is not in my forte'! Lol! Trying new things is amazing and it's not always about doing what you did "before" I try to do those things when and as my body allows, but the trick is to find new things to add to what you can do and enjoy every moment of everything you do! I hope this helps so far as suggestions! I have a ton more! (((Hugs)))    
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  U have to post some pics of ur artwork as I love all the things u mentioned....I have one broken sewing machine right now and it is driving me crazy...it has embroidery stitches but not like what u have....next I want a serger....I feel I can do more with one of them....and I love the heirloom sewing...do u watch the Create Channel?

I love to paint as well and I am nothing but self taught so I am not all that great and not going to make money with it, but as u all said it takes me somewhere else....

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I'm so excited to go to Branson this weekend for the walk!  If I am still able to walk comfortably after the 5 k we may go to silver dollar city.  We always enjoyed roller coasters and went to no amusement parks las year because I knew I would cry...not ready.  Now I know I can watch my kids have fun and be ok.  If I'm not ok to walk we are gong to see a show called six.  It is a concert by six brothers and all "instrument" noises are made by their mouths.
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I will try to find pis of some of what we have done, I don't usually take pics of that stuff Lol! I give it away or sell it and don't think to do pics of those! Lol! you would think I would since I love taking pics! lol! I may have some! I will look and see later! I wound up keep my little man out of school today as his friend and Baseball teammate passed away last night from stage 4 lung and liver cancer! I have to find out what the arrangements will be...He learned about cancer early with family and then at 4 years old his first friend had cancer, he is in remission right now, unfortunately Brendan's was stage four when they found it but he fought one heck of a battle that he lost last night.
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Im all for finding fun, being creative, going w/the flow.  Its as beneficial as meds, if not more so.  

Some days, all I could do was watch the birds at the feeder.  I wasnt even up to feeding them sometimes, but I was always glad that I did.
My worst post op day is 100x better than the worst pre-op ones.
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Wow, you guys have all found such wonderful ways to do new,, easier events. I made a really stupid mistake.  I am coaching cheer as most of you know, and it is  going well, but I must admit, as trying as it is.....it is alot of fun. It is not dancing which is my thing, and I cant do that yet, so this is a happy medium. I however without thinking made a mistake. I was trying teach one of my tumblers to do a front handspring, and without I thinking I did one, and landed great but, I was really worried, becasue of my neck and the chiari. It hurt for a week afterward. I will never make that mistake EVER again. Dr said everything is fine....just no tumbling ....lol. Congrats to all of you that are doing new and exciting things....I love all of my chiari family deeply, and think of you all everyday !
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Oh my I can't believe you we're able to do that!  Just the thought kills me lol
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From time to time, just to show my kids, or coworkers, that I'm younger than they think, I'll run and do a full set of cartwheels, then grimace, and wonder just how much damage I've done.
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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
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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.
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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 :)
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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!
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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.
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  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 : )
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I will take pictures:)  I will send you the invites to your email address so you can see my iMac skills lol!
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  Very Cool...I can't wait to see them..... : )
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The painting outing was so fun!  I learned that I can paint:)  I love my picture and it is hanging in my living room:)  I uploaded a few pics and Selma I sent you an email with more.  Next outing 11/11 brunch and art gallery tour.  
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  I saw the pics...r u sure none of u painted b4? WOW...and was that wine or sparkling cider u all were drinking.....lmao....cuz u all did sooooooooo well.

Looks like a lot of fun....I bet u get a larger group wanting to participate next time : )
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It was wine LOL ... We had not painted! Having the instructor really helped a lot because she demonstrated.
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  Yes, an instructor is helpful I watch Bob Ross and Sue   Schewee  on the create channel and paint along....I try diff techniques each time...hopefully I will get a complete pic soon....lol...
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