Happy Holidays everyone! no one has posted in so long, I have been wondering if there is a problem with the forum. so part of the reason for this post is to test the system.

I am always thinking about analogies for our situation, since it is so hard for others to be empathetic to our issues. Forgive me if I've mentioned this one before, but I don't think I have, and it's really the best one yet.

I am an Alien from another planet. In these situations, the Earthlings customs may offend me, and my customs may offend the Earthlings, with each of us being oblivious to the possibility and being unable to understand the reasons why the offense occurs. Many of these things may be psychological/cultural things that just require some education and forethought in order to work out any misunderstandings, no harm done type of thing. But several of these issues are actually ones in which the Earthlings may cause physiological harm to me with their actions, actions which to them are completely normal and harmless in their world. Because these are biological events, I am not able to control my immediate aversive response to their behaviors, and because they don't understand it, they are offended by ME. When in fact, the initial event was my body and brain being offended by THEM. I have found over the years that no matter how I try to explain the sequence of events and how their behavior affects me, I continually have problems with the majority of people still not understanding, and persisting in damaging behaviors, as well as in abusive attitudes towards me. They may speak with full empathy for my situation, and accommodate me much of the time, but then do something awful. Because they really didn't understand after all. Because to truly understand an alien physiology and culture is a pretty tall order. These events occur within my family unit and they always feel like an intense betrayal to me, and leave me feeling so incredibly alone in the world. I have given up trying to explain, and I just would rather be left alone. They don't listen to me anyway, all they hear are excuses, not the truth. They think that their own petty whims are more important than my need for quiet, for clean air, for rest, because they can't see how negatively the absence of these things affect me. They can't see the swelling in my brain and can't even imagine what it might feel like, or what it might do to a person to have to be alert to the triggers in every waking moment. To them, I am just a B----.

I would like to propose that we may begin to say that we are Aliens from the planet Hephaestus (an Apollo asteroid discovered in 1978). Hephaestus was the greek god of the Forge, and when Zeus had a bad headache, Hephaestus chopped his head open in order to cure it. I am sure that most of you have considered this option at one point or another.......

I've suggested we have pink canes made that say I HAVE IIH down the side, but what I'm discovering is that the breast cancer people have appropriated the color pink. I really hate that alien green color. maybe we can do purple. and at the top of the cane on the handle we can have a purple alien head.

meanwhile, I'm hanging out here on planet H by myself. it's nice and quiet and it smells like nothing.

Deb

Hi Deb,
Yes, there is life out here. Just haven't been very busy. I hope that our members are enjoying the holiday season and have decided to take a break from the computer. I live alone, so all the holidays tend to run together to me. Just as when I was driving truck, my family all gets together when they don't have a better offer :roll: and the weather is good, and no one is sicker than usual.............
I am sorry to hear that you are still dealing with the lack of compassion exhibited by those close to you. We can always hope that things will change, although that rarely happens. Sometimes it is just better to step back, let the others do their thing, live their lives and leave us alone. Having IIH can indeed be a lonely disease, especially because it is such a "hidden" one. At least we have each other. We all know just how bad it can be, and hate the thought of anyone else having to go through the same thing. We get it. We can also look at others with other chronic illnesses with the kind of compassion that can only be felt by one who has been there, done that, and maybe got the shirt to prove it.
I don't know what to suggest as far as a way to get the public more aware of IIH. I have a book bag that has the ihrf logo on it. I have never had anyone ask about it. I think often others think that it isn't their business to ask. Maybe we just need to really focus on the annual IIH awareness week and do what we can then. I just don't know.

Here's hoping 2013 will be a better year for all of us.

Deb, what a wonderful and poetic way to express your feelings..writing is a great outlet! Hopefully you have realized that you are not sitting alone on planet H..we're all here to support each other. I'm sure everyone's just been busy with the holidays and will be meandering back to the site as life normalizes. Green and blue are actually the colors assigned to IIH, whoever makes those decisions. There is rare disease day, NORD, IHRF..I suggest checking them out for progress on IIH education. Maybe getting involved will help give you more of a sense of power and control..I know it helps me!

for your comments!
I think that colors for IIH should be female colors, because most of us are women. green and blue just don't make sense to me. maybe mix them together and make it teal.

Hi Deb
It's usually quiet over the holiday season, although I have been helping people who have contacted me via twitter during this time. We have Brain Awareness Week and Rare Disease Day coming up in the next few months. This year we hope to do something more substantial to highlight IIH, so if you have any ideas, please let us know.
Also, we have our lapel pins in production at the moment, and hope to have them available in the next few weeks. We hope with adequate funds to be able to provide more things in the future, especially to bring attention IIH.

how do I find out about the lapel pins? is there a picture of one on the site? can I purchase one?