Would you be willing to share your funny and inspirational experiences you've had with IIH?

Admin1

Hi Everybody Very Happy

I have been talking with LauraJean who is a fellow IIH sufferer, and she has suggested we all put our funny and inspirational stories we have experienced with IIH. LauraJean and I both agree that by putting everyones stories together in a book, especially for sufferers of IIH, could be a fun way to create awareness about the disease. Plus- a good coping skill.

So please contribute your stories and know you will be helping lots of other sufferers by doing so. I can't wait to read your inspirational and funny stories as I'm sure you all must have some, I know I do from my surgeries and time in hospital. Please send them to: brainpainstories@gmail.com

We're counting on you!

thank you

Admin2

Sounds like a really interesting idea ... can you say a little more about the premise of the book, so I can think about what I might contribute? Is the idea to make it a basically funny book, with some serious inspirational stories thrown in? Or should the stories be written in a style that is both funny and inspirational at the same time? Sorry for being dense, just want to make sure I have the right idea before I start putting something together. Smile

Also, did you want to specify an email address for us to send the stories to, rather than just having people post them here in this thread? I'm thinking the whole book would kinda end up being available here in this thread if we just post here...

Admin1

The idea Your stories can be funny and inspirational or a funny or serious story like you said. You can email your stories to us at brainpainstories@gmail.com, I apologise for not being clearer. Very Happy

Admin2

Sounds great, Heidi! Very Happy

I will put something together for the project.

Member

Thats an awesome idea!! Consider it done!

Admin2

I wish I could help but I honestly cannot think of anything funny about this disease. comedy is the opposite of tragedy. my life is a wreck. a constant struggle.
sorry.

Admin2

Sophiasmom wrote:: I wish I could help but I honestly cannot think of anything funny about this disease. comedy is the opposite of tragedy. my life is a wreck. a constant struggle.
sorry.

How about just an inspirational story about how you've learned to deal with some aspect of IIH? Doesn't have to be funny I don't think. From your posts, it seems like you've got a lot of experience and knowledge about your disease and you're so good at expressing yourself. You might think of something you can contribute. Smile

I'm still mulling it over myself ...

Admin1

What we are trying to do is to provide stories from sufferers of IH, IIH, Hydrocephelus and Chiari that have an element of humour from something that has happened, as well as inspirational stories that will help others who are newly diagnosed, have these conditions or going through the surgeries. Many often read the "scary" surgery stories and things on the internet, and it causes fear and apprehension. We want to soften those kinds of stories by having a book full of stories from sufferers who have found humour in various situations that has helped them to cope, as well as the inspirational stories mixed in that will give hope.

They don't have to be overly long stories, they can be anecdotes and short. We do hope that you embrace this idea because you will be doing something special, that could benefit a lot of sufferers, and give them back some joy and hope all in one go, at a time when, like we ourselves have done, find themselves in a bleak situation.

Moderator

I can sure try with over 24 brain surgery's-6 spine-over 250 spinal taps and wow vision prolems! I know I have had tons of hospital visits/stays I can work on a few insperational stories. I don't have really any funny stories it's hard to find the humor in this disease.

Member

Heidi

I hate to be a downer but haven't experienced anything funny except that i dont know now if i have IIH or ever had it although i've been treated for it for over 10 years. Being able to be a small part of this venue that provides users with hope and empathy is inspirational to me.

Warm wishes

Mark

Admin2

I think the point is to share your experiences w/ IIH, whether they're funny, inspirational, or just a glimpse into a life w/ IIH. I've had a lot of quirky things happen that aren't necessarily laugh out loud funny, but totally bizarre and outrageous. IIH can be completely overwhelming and depressing, but what gets you through the day or what have you learned that may help someone else..those can be just as inspirational as a triumph or remission. If you can't think of anything at this point, then please don't stress about it..not everyone can put it into words, so you'll find other outlets or ways to help the cause. We educate family, friends, health care professionals, co-workers, etc on a daily basis..this is just a compilation of stories to continue our efforts.

Admin1

Mark,

that you find being part of this Foundation group inspirational is the kind of thing you could write about, such as how it has helped you etc. Those are the kind of things that sufferers like to hear and read about too.

Member

Heidi - You are entirely correct. You guys do make it seem better!

Member

I wanna help but Im not good with my words and don't know what I would talk about ???

Member

[i]

Saturday, August 25th, 2012

Hello Everyone - my User Name is ElysianFields7x7 (a story I may tell one day.) In July I was suddenly struck by paralysis in my left arm, severe tingling in my fingers, a massive headache and temporary blindness. Because I have an extensive background in healthcare, I knew it was not a heart attack. So I waited for everyone to leave the house and drove myself to the Emergency Department around 3:30 PM. SO I had experienced temporary blindness? I sort of did not think about that as I was driving. Thankfully the Hospital is less than ten minutes from the house. It took no time to diagnose my problem because my headache woke my up at 3:00 AM.Since I have been unemployed for two years, I have no health insurance nor any money. I kept telling them but they ordered a CT Scan and X-rays anyway. The mass at the bast of my brain showed up immediately. So I had a Lumbar Puncture. That was only funny because I have an unhealthy and extraordinarily high pain threshold. Therefore I did not flinch when they performed the procedure. The Doctor kept saying "You will feel some pressure. Do you feel it?" My answer, "No." Doctor applying the anesthesia soap,"You will feel a cold substance on you back three times. Do you feel it?" Me, No." Doctor starting the Spinal Tap, "You will feel a lot of pressure as I stick the needle into your spine. Do you feel it?" Me, "No." When he was finished he looked at me and said, "I have never had a patient go through an LP and did not even flinch! That is pretty scary!". Me, "I told you guys I have a high pain threshold. Frankly I did not feel a thing." I cannot afford the medication they prescribed so my personal doctor called in a cheap diuretic that I had to stop because I could not get it refilled. I have not seen a Neurologist and cannot see how that will happen under the current financial conditions. My symptoms include paralysis of both arms with tingling in my fingers; a constant massive headache, shading and blurred, double vision and seizures. The seizures are getting more frequent and a lot worse. I can only sleep for an hour or two before the CSF buildup causes the seizures. My head and upper body quake so hard I think I feel my brain rocking back and forth in my head. The really, really severe one cause my entire body to quake uncontrollably. I need to get up when this happens but I feel unsteady on my feet and really confused. My partner says they are really bad and wake her up from a sound sleep. She can feel the entire bed shaking. Scares the cast too.
I am so damn grateful for this Forum. I have been wondering around cyberspace for two weeks trying to find some type of support network for this condition. I am just overwhelmed and I have no place to turn for help. Sorry I rambled on so much. You have no idea how grateful I am that you are here. .

Guest

oh my! I am so sorry. Where do you live? Are you able to get on government medical assistance at all? I recently was accepted for state medical care. I don't know what I would do with out it. All the tests the doctors order is insane!! The gas alone to the doctor's office(s) is a burden all by itself! I do hope that this site helps you! I know the folks here have been a huge help to me. Just being able to talk on here really is awesome! Everyone understands what terms you are using and judgements are not made about you. Which is something I struggle with on a daily basis. It feels like a majority of people do not understand what we are going through, and they either act like we are making it up, or they talk to you like you are going to break. But on this site, every one understands. It is the only site I have found where I feel accepted and normal.
I really hope things start going better for you. :-)

Member

I will share a story that made me kind of laugh quite a few months ago when I had an office visit with my neuro-ophthalmologist:

Whenever I see my neuro-ophthalmologist, I get one of either two techs. There is a guy (who is easy on the eyes) who is very nice, and very patient especially when taking my eye pressure with that tono-pen they come at you with. Or I get "Hilda" as I will call her who is very demanding and not too pleasant. She will say, "Eyes open, eyes straight ahead! BOTH eyes open!!!" And she keeps repeating this until I get it right because, let's face it, I don't do well with sharp objects coming at my eyeball! Would you be willing to share your funny and inspirational experiences you've had with IIH? 483943

Would you be willing to share your funny and inspirational experiences you've had with IIH? 483943

Well, I had "Hilda" the past several times I had been there. And this time in particular that I went, I had her again. She said, "Just one minute and I will be back to take your eye pressure." I thought, oh great, here we go again! To my surprise, Tech #1, the good looking one, came in to take my eye pressure. I just kept laughing to my self thinking, she probably went to him and said, "There's no way I can handle this girl! She just doesn't cooperate for me!" "Hilda" also tends to complain about how her day has gone quite a bit, so, I didn't mind having him after all! Very Happy

Member

How the heck do I make my own post to start a discussion ???

Admin1

Sammie all you do is click on the New Topic button at the top on the left, and start a new discussion.