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.
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.
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.
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.
Just some more photos for this month. I’ve been bad about keeping up to schedule with it.
Lots of brain fog today so maybe I will edit this when I can think clearly enough to make a coherent post.
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.
Photos are of my actual brain MRI.
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 :(.
I may have endometriosis, but it is not the endo me!
(I just realized the text is really really small, I’m so sorry)
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.
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.
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.