WEDNESDAY WORKSHOP

lets get all our ideas for making money ...things we with chiari can do.....and make a difference!

this is what Shane started on another thread.....so let's run with it......

[jyojlynn]

I am entering a short story writing contest about the day in the life of a person with Chiari. The first prize is $3000.  I am a pretty good writer and I have won contests in the past, so that is something I am going to do.

Another thing I though about is contacting the CSF - The Chiari & Syringomylelia Foundation and discuss some fundraising options with their Exective Director.  I have been a professional grant writer for many years, and would like to ask them if they could use my services in any way.

I have also seen things that are similar to "Walk for the Cure" only it pertains to Chiari.  We need to make it more well known.  I think those are a few good areas to start.

I was also serious about compiling everyones stories, even if they are only for us!   What an inspiration that would be to others.....

What about everyone else????

[Lovemygirls2]

I would be more than willing to contribute my story in a compilation of Chiari stories.  I certainly couldn't be the one to compile them- English was not my strong subject! haha
But I would contribute a story if there was every a book being compiled.  Include me on that-  I think that would truly be inspirational!

[selmaS]

I think that is great!!

The walk for Chiari was in Sept.....this yr was the first one ever!! It also includes Syringomyelia and related conditions....a purple ribbion is used for chiari.


I would love to see an Idea for U tube-----come on Shane....do ur jig!!!

[jyojlynn]

Okay - so here is my rough draft.  Please give critiques - nicely - remember I cry easily LOL.  It has to stay under 1000 words and right now it is at 894.

The Monster Under The Bed
     She cracked opened her eye tentatively as the alarm kept a pulsating rhythm which pounded the obnoxious beating in her skull.  Another headache – or was it the same one from yesterday? It was getting so hard to tell as all has begun to merge into one giant mass.  Trying to get out of bed proved to be a mistake, as the monster under the bed has other plans for her today. Her neck was decisively not going to cooperate and let her know - shooting radiant anguish throughout offshoots to various alcoves where little pockets of hurt liked to lurk; slicing like scalpels through her shoulders and burning down into the right arm to the most delicate digits that on many days she could only feel now as one does when the hands have gone to sleep and only then when they are just perking up – that awful painful prickling that is neither numb but yet stings at the same moment. As that agony shot out arm ward she cried out, for a different torture was rushing down her spine, settling for a moment here or there just for good measure to be sure she understood exactly what was in control of her, scurrying merrily around the right sciatic nerve and frantically fanning the flames burning, burning through the leg and into her foot. She lies there in the haze induced pain-always the pain; unending.  
     Through lonely tears she thinks about this monster that has come to control her life that has her locked away in a vault of pain and solitude and grief for what would never again be for her. Chiari. The word scorches in her mind just as surely as if she has put her hand to an open flame. It isn’t like she has one of the “popular” diseases, like breast cancer or HIV (not that she wants either of those mind you, but at least people know what they are). But at least those diseases get funding in Congress.  Those get research grants. Those are real. Those are noticed by doctors. She has been to so many doctors she has lost count.  The rheumatologist who said she has fibromyalgia.  The neurologists that had her walk like a duck and touch her nose and said she was fine. The headache specialist who had wanted to shoot her head full of Botox.  But none cared about all of the weird symptoms though – the cold hands and feet, the ringing ears, the blurred vision, the scoliosis, the vomiting, the numb face, the fainting spells, the chest pains, the fatigue, and of course the headaches and the pain.  They weren’t related, they said.  She was imagining it, they said.  She was too stressed, they said. But now it was worse – she has begun to slur her words and she has lost her memory.  Not her memory, she begged the monster, not the precious parts of her past that made her unique! But begging didn’t matter to the monster.  He took what he wanted and now he wanted her memory.  
     But finally she has found a miracle.  While talking to a friend of her husbands, he told her that his daughter has gone to see a neurosurgeon and that she should go.  She looks up the strange name of the malady on the internet when she got home and was stunned.  There before her were all of those strange symptoms, listed one after another.  She quickly makes an appointment  and now has finally found a Neurosurgeon that believed her. Her knight has found the answer.  He put her puzzle together and gave it that name – Chiari Malformation I.  A lot of things she doesn’t understand. Her brain hangs down too low into the tonsils or some such nonsense.  There is a surgery to be done – a brain surgery.  Today. She is afraid.  Today her knight would fight the monster under her bed and he would win – at least for a while. There is no cure, he has said, just relief. Just relief from the monster. Would she always be looking under the bed or in the closet for the monster? Maybe. If so, it couldn’t be any worse than it is now, and she would be able to look the monster in the face and call it by name without fear any longer – Chiari.  For it is the fear that makes her weak and the monster strong. And so, even though the monster was trying its best to hold her down, she sits up in bed, struggling with the bursting in her head and the weariness in her spirit and the torment in every part of her flesh. It is hard to breathe now, for the monster has gripped her around the throat and is trying to choke her. She begins to cough, and the spasms tear through her chest and rip at her spine. As she tries to stand the dizziness overtakes her and she collapse back to the bed, already exhausted. Damn him! Damn this monster Chiari! She rises up again and falls, and again and again because she knows that tomorrow will be a new beginning; she will be free for the first time in thirty years.  She smiles through the tears and stands again.

[selmaS]

ok...we r started with our first story....ne others?

how about how we can use U tube??

I am sure there r ideas out there...and this thread will be here every Wednesday.

[Shane99]

     I've written a couple of stories about my Chiari experiances. I've posted them online on a place called Helium (it's a website for beginning writers). I can always take them down and add them to a book if anyone thinks that they are entertaining enough. You should all go check them out - along with the other stories I've written there. All of them are first drafts, but they get the point across.

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     I'd love to figure out some way to use youtube to make some cash, but I don't really have any idea how.

[selmaS]

put on ur thinking cap...I m sure we can figure something out!!!


I can't wait to read ur stories.

[Shane99]

Can we not put links on these threads?

[selmaS]

sorry , no....but I do have the links....if ne one wants them Shane or I can PM then to u.

[misslissa528]

  Hey there!  I have been reading all of the different posts throughout this site and I am so very jealous!  I have a Chiari 1 Malformation, and was diagnosed in July of 2006, and had surgery in September!  My Nuero said that it would be better to do it sooner rather than later and to also get it done while I'm young!  I regret trusting in his words.  I had that surgery and for weeks, maybe even months later I didn't know if I was any better because I was still recovering from the surgery ( which I was considered a "whiner" by my family because they don't really understand what this disease is and how bad it hurts ).  I finally started to feel somewhat "normal" again and thought that the surgery was a success!  And then a few months passed and on came the muscle spasms again, and then the headaches, and then all of the symptoms that I had before the surgery, as well as a list of new ones.

  Hasn't anyone else out there had any experiences like mine?  My headaches are worse now than they were before and happen alot more frequently.  Anything will bring on a headache! The lighting in a room, a gloomy day,  a rough day with my 6 year old son,  actually any stress at all!

  I hate to be the complainer, but I thought that as I researched this more I would find at least a few people who have had bad experiences like mine but I'm just not finding them!  Does anyone know of any people at all who have similar stories to mine that might have some suggestions or ideas as to what I should do?

I would really appreciate any feedback anyone has on this! Please. Thank you for taking the time to read this.

[selmaS]

do u know what ur herniation was?.....sometimes there is perm damage....it is hard to say what is causing ur "new" symptoms....again everyone is different.

talk with the few I mentioned  on ur other post, I am sure that they can add some insight.


Godspeed
"selma"

[Shane99]

Unfortunately, your case is pretty common. Understand that there is no cure for Chiari. The surgery can only help with the symptoms. Sometimes the symptoms come back, sometimes they don't - sometimes they come back fairly quickly.

You should have another MRI to see if the herniation is still growing.

I still have problems since my surgery. Some of the problems appear to be permanant.

I hate that your family hasn't been more supportive - they need to understand that you've had BRAIN SURGERY!!!!!

[misslissa528]

I'm not very good with the computer so I'm still figuring out how to work this site, lol!!!  Thank you for taking the time to answer me.  I saw that I only had the "welcome" message in my inbox and that was it. I didn't know that I had to go back to the actual post to look at the replies. This is the first reply I have found so if you answered me on another post, you'll probably hear from me again!

  Ummm....  I asked my Nuero how big it was and he said that he doesn't know?  I had told him that I had read a few different stories on Chiari's and all of the people were talking about how big theirs was and he said that he had never heard people talk about it's size?  And just that it's a stage 1 Chiari and that mine isn't big at all, that it was just on the borderline of a Chiari?  I had many questions for him that he couldn't answer.  In fact, I had just talked with him on the phone to ask about all of the new symptoms that I was experiencing and he said that they had nothing to do with the Chiari.  So I researched the symptoms some more and found a site with "A New List of Chiari Symptoms" and they were all on that list!!  This is what made me want to look around for other Nuero's in my area, but I'm told that he is one of the best in Albany!

  And as for my family not being supportive, that's just the way they've always been.  My mother is one of those people who tell you to stop the whining and deal with it!  She thinks that any woman who's had a baby and stays in the hospital for more than a day, is a whiner!  My boyfriend is the only one who's been there for me throughout this whole thing.  Even he didn't know how bad a Chiair was until he came with me to my first appointment.  He didn't want me to have the surgery.  He thought I jumped into it way to fast, and I did. That Dr. had me sold.

Anyways, I'm sorry for the lenghty posts. I'm sure they'll get shorter as I get used to this site.  I feel like I have to include every detail or else nobody will understan me!  Thanks again for replying. Talk to you again soon.

[Shane99]

I don't know who your doctor was, but he wasn't a Chiari expert. Not all experts will mention the size of the herniation, and in fact, may not know if you ask them righ off the top of their head, but the size is a good indicator of how quickly it's going to strat causing problems.

You mentioned "And just that it's a stage 1 Chiari and that mine isn't big at all, that it was just on the borderline of a Chiari" That would suggest (keep in mind I'm not a health care professional, so this isn't a diagnoses - just my opinion) a herniation of around 5mm.

The Chiari Institute is in New York. Check that out.

I'm sorry that your family isn't more supportive. maybe they'll understand if you tell them that anyone of them has a 14% chance of having it also.

Don't worry about the length of your posts. I know I tend to ramble, but this is a nice forum and we try to be friendly and comforting here. So, go ahead.

[Shane99]

Hmm, we seem to have gotten off topic here.

Okay, we are trying to come up with idea's for making money off of this chiari situation. Some of us aren't able to work anymore.

Anyone have any idea's as to who we can make money, at home, working when we feel able? We've mentioned;




Writing - perhaps a book about our experiances, or even just short story fiction or whatever you might be interested in.

Youtube - Is there any way to make money from youtube?



How about the old fashioned way of just asking for a hand out :)? Is there a way or a good place - or any laws against - setting up something like PayPal account and seeing if anyone is willing to donate?

[Stargazey]

Making money?! Hmm, I don't work anymore, either. But I would love tol help somehow.
We need a fundraiser, recognition from the Medical Community, to champion our cause!Someone to believe in this, would be refreshing! Arizona, doesn't seem to be open minded enough (especially) NS. Barrow Neruro. just patted my shoulder and said I had to deal with it. There is a person here in Scottsdale, who I think started a web site re Chiari.  I will check.  People want to know where the money is going. Write offs for taxes etc. I don't think people will donate unless we have legitimate backing. I think there is link with March of Dimes. We need research. So we need physicians who are interested in an odd diagnosis, such as Chiari. It all comes back to the almighty $$. There has to be an interest. What did Chip do?He sold pillows, and a little book on his website thru paypal to get the message out. I don't know who is picking up the sword as it were, since his passing. Maybe, his sister or his fiance could tell us. There were alot of people who were touched and help by Chip and WACMA. Shane, did you know Chip, personally?

[selmaS]

I do know u can have paypal on a blog and ask for donations....I have a friend that has it...she also makes jewelry for chiari and sells it.

She also makes baskets of goodies to give to chiari patients after surgery....she visits patients at TCI when she goes for appointments.

[Stargazey]

Oh, hello, friend!  Boy have you got me all up in the air. I feel like I could take on everybody who has ever ignored or put off a Chiari pt. I think my BP has gone up a few numbers. I'm loaded and ready. Unfortunately, I'm also at home by myself!!!! I guess I feel pretty good, to feel this ranty! (sp) Funny....Woke up with a migraine, took my meds and then boom. Afraid to stop now.. on a run.... Feel like going to the mountains and shouting my head off!!! Oh, I know leaning out the window, and saying " I have had it, and I am not going to take it anymore." or something like that...Hee Hee, watch out crazy mom on the loose!  Anyways, I could do the crafty thing too. Really, people send donations to blog..for Chiari...Does she sell the jewelry or do the patrons donate an amt of money and they receive a certain piece of jewelry for that donation? Like PBS does for their concert shows? Oh, well, I am up for anything today. Don't know about tomorrow but today is the limit. ha ha.  Well, I have been going at it for awhile, starting to spell backwards!!!! Hugs, Stargazey (aka Mary)

[selmaS]

WOW!!...well u made me smile and I can't stop! : )

she sells the jewelry......

I do that too,  and I  started putting the letters for the next word b4 the first one is done.....lol.....I look at it an wonder..what was I trying to say.....

[alisa0306]

hello ev1,
Im new to this site and i need to find out if there is any organzations that can help you out finacially to get to the Chiari clinic in NYC.. My sister has Chiari malformation and she is getting worse everyday.. The doctors we have taken her to tell her nothing is wrong with her... we dont have the money to travel from FL to NY.... Im scared she is gonna die shes in content pain her vision is going , along with difficulty breathing,legs going numb, loss of balance, headaches, very tired and did i mention the pain... my sister Lori has 3 children that she cant really take care of anymore and unfornutely i live 6 hours away so my parents r doing there best.... we feel lost, and dont know where to turn or how to get the doctors to belive and help her.......I would greatly appreciate any info that u can provide ive been thru all the websites just about and i cant find anything that helps with the cost of getting to NY....

Not sure exactly how to get back to this page so I will leave my email and try to get back to this site....Thank You all who care and know what it is we are feeling....
God Bless
Alisa

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subject- Chiari's

[selmaS]

...u will recieve an e-mail and it will direct u back....also ur e-mail can not be placed on a thread...u need to PM it.....there r other very good chiari drs.....I am not sure what orginazations r in FL, but I have heard others speak of a Dr Green.....try and google the name and please check him out...I do not know ne thing about him personally.

try asking Shane99 about his dr.....not sure what part of FL u r in, so maybe Shane's dr would be closer than NY.....

I know that the news covered a story of a girl in FL and her chiari surgery, so there must be some org down there, and maybe info on helping with the costs...try fundraising....by doing so u will also bring more attention to this condition.

Good luck
Godspeed
"selma"

[jptdad]

This is not a money making idea, but I do think it is worth our time.  There is a bill in the House of Rep to proclaim a month of Chiari Awareness.  The vote will probably not place until Januay, but e-mail your rep and senator to keep this in the fore front.  To view go to:

http://www.thomas.gov

Then type in House Res 1422

Peace,
jptdad

[selmaS]

I agree..this is very worth while for all of us to do.
the link may get starred out......so if ne one is interested, I copied the link and I am sure jptdad and myself will be willing to PM to u.

Thanks great idea for getting chiari out where we need it!! : )

[alisa0306]

Thank you selma for the info she did seen  a dr. heros at dr. greens office and he turned her away and told her nothing was wrong with her when we know otherwise....My sister was crushed they traveled 4 hours to miami and was treated poorly my mother is devestated I just cant belive why some dr.s are so mean and non caring. my sister feels like theres no hope left and is telling us she will just end this misery herself....Im so scared!! It should not be this hard to get help..... Thanks for listening :)

Also im not sure what PM is  or used for...lol
alisa

[selmaS]

.....does she have copies of her MRI's?....if not she should ask for copies and all reports as well.as I mentioned I know nothing of Dr Green, except that other's have mentioned his name.....maybe he doesn't have the experience ur sister needs....there is a gov link that helps with chiari surgery/treatment when u have no insurance, but again I know nothing about it...who the drs r ect.....some drs will review MRI's 4 u...call TCI or another dr of ur choice and ask if they could just read them 4 u so u know what u r dealing with.

I have been to 2 diff NS anad they both gave me rude brush offs too! Most with chiari have experience it as well.Please let ur sister know she is not alone!!
if u see Shane99's name and put ur mouse over it, a box will open and u can send a note or message.....I suggest u do that and ask him some ?'s about his dr.

keep us posted
Godspeed
"selma"

[Lovemygirls2]

Hey!  I can understand the frustration of finding a doctor that understands, and I am sorry your sister is going through this!  My doctor is Dr. Hampf and he is in Nashville, TN. So it would certainly be closer than going to New York.  The thing that I liked about Dr. Hampfs office- it won't be a wasted trip!  because his office required me to send my MRIs and everything from every other doctor I had gone to before they would even make me an appointment.  So- even though it was scary about whether he would see me or not- it wasn't a wasted trip!  He will only make an appointment if he feels it is necessary.  So- that might be something you want to consider.  ALSO- I don't know anything about this organization- but I happened upon a site called Wishes and Rainbows when I was first diagnosed.  It is an organization that provides support for travel expenses and stuff for people diagnosed with Chiari.  I bookmarked it because I didn't know how far I would have to travel for a specialist.  Luckily, I found one close to home- so I don't know how legitimate this organization is but its worth checking them out.  They actually have an online application for assistance- http://www.wishesandrainbows.org/assistance.html  Go to this site and on the left hand side it says assistance.  I hope this helps- like I said I don't know anything about it but maybe its worth looking into!  Keep us posted!

[alisa0306]

Thank you so much for the info...... we are going to check it out..... Happy  Holidays.
I'll let you  all know what happens.

God Bless

[selmaS]

let's get back on track here and think about what can we do to raise $$ for ourselves and chiari..... as well as Chiari  awareness!!!!

[selmaS]

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[Hursty48]

Hey there!!!! I am here - got the drift of things - der! - not that hard really when you work out there is 7 days in a week and all have a place here for socialising!
Jyoglyn: I loved your little story about the monster - I am going to try and print this page and keep that and even take it to my neurosurgen appointent and slip it in with all the other info I am taking him! So so true and well described in an interesting way.
I know what all of you are feeling like with being scared and worried etc..
Misslissa528 - that is so typical of so many doctors - I have diagnosed doctors with having serious anxiety / stress obsessions. Its very scarey I know. But welcome and sorry I havent replied to you before but still new myself and only just found out we have a social scene!!!
I dont have much to add about raising money for Chiari foundations as I cant even find one in Australia and that is why I have invaded you all in America - not that I could leave you now even if one popped up over here.
Basically wanted to let you know Selma that I have caught on and am "in the know now".
Had a very painful back today - I just want to rush off to emergency all the time and tell them I think paralysis is setting in but then I realise its no use as last week when I did that the dr on duty had to google Chiari to see what it was and I was told I was having anxiety over it all.............................maybe i am and maybe I'm not - hope the latter is the case. I'd rather be a bit kooky than paralised.
x Sue

[selmaS]

well u could start a support group there!!....and we r looking as to how with chiari or what with chiari we can do to earn and raise monies....for ourself and to help with chiari and awareness of chiari!!


I knew u find all the threads!!!......I think u were using ur "home" and were only seeing 3 threads...????
I am sure u found ur shortcuts and have founf the entire forum by now......

"selma"

[selmaS]

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