Fun Run

I found a 5k/2mile walk fundraiser for Migraine Research! I want to participate in at least one of these.

The Main Website is Here

I’m thinking about going to the Oct 7th one in Philly (2+ hours from the house) Here

But I’m also seeing there’s one in DC on Oct 15th, the weekend after Here

I can’t really run..  I’ll probably try to do the walks for each one. The price is about $30/$40 per person depending on which one I go to. (Or both! lmao) Of course DC will be the one that makes me feel more at home. There’s no way in hell I’m going to the one in West Virginia. Also want to go to take photos of each race.

Please let me have money/transportation by the time these things come up.

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It’s June Again

And that makes it Migraine Awareness Month again as well! This year I don’t have any sort of elaborate photography project or anything planned (well, not yet at least) but I’ll figure out something to do for it.  Right now I just want an awareness shirt I can wear. But I can’t afford the fucking $20 to order one online.

Migraine Awareness weeks 3 & 4

Week 3 was a struggle for me. I was dealing with major brain fog and some return of the more constant pain. Maybe it was the botox wearing off? I couldn’t properly make the image I wanted to, but I decided to try to illustrate how I feel during a really bad fog episode.

cloudbrain

Week 4’s image is how I feel most of the time… Out of order!! My brain is not working properly. Purple sticky note because purple is the color for migraine awareness. IMG_4240

I think this may be the conclusion of my little photo project for Migraine Awareness month, unless I can come up with another really cool idea or something for the last few days. I am exhausted!! So much running around to doctors appointments and driving and I just want to sleep. Zzzzzz.

MIGRAINE AWARENESS MONTH

June is Migraine Awareness Month!!!! Here are some facts:

  • Migraine is the 6th most disabling illness in the world
  • More than 4 million people in the US have chronic daily migraine
  • 18% of American women experience migraines
  • More than half of all migraine sufferers are never diagnosed

 

Chronic Daily Migraine has really sidetracked my life; I never thought it would be like this. I see my neurologist more than my friends. I think a little more education and awareness is needed. Migraine is not “just a headache”, it is an actual neurological disease.

migraine1migraine2

Photos are of my actual brain MRI.

 

Endo

Endometriosis Awareness Month was last month, March. And all month I was thinking about some little photoshoot I could do, as well as make an awareness poster to go with it, and then I’d make a whole big blog post about it, and post it everywhere.. You see how well that worked out. So here’s just a simple thing I made in photoshop that took 3 hours :(.

thing

I may have endometriosis, but it is not the endo me!

(I just realized the text is really really small, I’m so sorry)

Rare Disease Day: Visual Snow

So lets talk about my rare disease. I suffer from Visual Snow. I cannot find any statistics or community about my disease. Visual Snow is a 24/7 neurological disease that causes visual symptoms, like seeing snow or tv static. It also causes increased light sensitivity, seeing after images and trails, fatigue, tinnitus cognitive dysfunction and some others. It can lead to anxiety and depression.

 

IMG_2210
My “suffering the silence” portrait. http://sufferingthesilence.com/

I have a hard time getting doctors to take me seriously because of this condition. No one has answers and there are no tests. No studies are being done in the US (as far as I know).

It is hard to live with this disease because it is widely misunderstood. It affects my most important senses (sight & hearing) as well as my brain. I have a hard time seeing through the snow and visual disturbances. I have a hard time hearing because of the tinnitus and sound sensitivity. I have trouble with thinking, forming thoughts and words, and then communicating those thoughts coherently. I often feel like I am trapped inside my own head, unable to see, hear or effectively communicate with the world around me.

VS-on-text
An example of VS. https://en.wikipedia.org/wiki/Visual_snow

 

I have special doctor recommended glasses to try and tone down some of the symptoms. They block about 20% more light than normal sunglasses, and have a purple tint that’s helping me deal with some afterimages, contrast issues and a small amount of snow. These glasses are allowing me to gain some of my visual functionality back.

There is no cure and no treatment that has been proven to work. Experts don’t even know which part of the brain it comes from. I can only hope that it doesn’t get worse as I continue to struggle through every day.

Here’s a video that made me cry REAL TEARS the first time I watched it. It (almost) perfectly describes my vision. Add in a large amount of mystery scotoma and more colored halos etc. and that’s pretty much how I see.