Visual Snow Awareness Campaign Video

 

 

  I created this video to help raise awareness for Visual Snow.

 For anyone who is viewing my blog for the first time today because of this video, I encourage you to watch the video completely and then start from my original post from 2010. You can see how long this journey has been and get an idea of what just one person, out of thousands of others with this rare condition, is going through. This is why we need your help to get this video out there and to educate the general public about this condition. We need funding www.gofundme.com/visual-snow so that we can raise the money needed to start the next phase of the study. We having willing and ready researchers who have already completed one study.... help us get to the next study so that we can get the treatment needed to halt this progressing syndrome.

You can learn more about Visual Snow by visiting www.eyeonvisionfoundation.org.


A second video of me talking about my condition:

Explaining an invisible illness....

 This past Sunday I was presented with a challenge. Actually the past several Sunday's I have been presented with this same challenge. You see, along with the Visual Snow and it's crazy amount of weird neurological symptoms, I've seemed to have acquired some other weird symptoms.... while singing. I've always loved singing... I'm decent at it and enjoy it, so on Sundays at church I use that time to belt out some of my favorite songs that the band is singing. As of late however I have been having some odd symptoms. It seems as soon as I start singing my heart begins to beat out of my chest and I start to become faint... I literally have to stop singing, grab a drink and try to breathe. I have no idea why this is happening. I have tried to point my finger at it being nerves, but that's ridiculous because it's not like I am standing on the stage. Anyways, so I became faced with a challenge when I began to feel faint. I decided I was going to sit down, but first I looked around the room. I saw two other people sitting, one who was about 8 months pregnant and the other with an apparent broken back... I decided to stand. I couldn't allow myself to get into a position where I would have to explain what was happening to me. Wow, how ironic is that? I have a condition that very little know about and here I can't even speak out about it. How can I expect anyone to ever understand the condition, let alone donate to the gofundme page to raise enough funds for the next phase of research?

 Maybe it's pride? I am sure it's pride. I've spent years and years trying to stand out from everyone else and now I do because I am different and I so badly want to blend in. I just want to be normal and not judged that I am not like everyone else. I have something wrong with my brain. The truth is... I look normal on the outside, so I don't think any of my previous statements are rational.... it's very much irrational to think that way.....

 I did however experience a situation where the same person I've already told about my issues asked me to join her at the same function I already told her once that I could not attend because it was at night. She used the same responses she did last time stating she would drive, etc. I gave her the same answers as well. Needless to say it's very unlikely that she retained any information about my condition because... how do you explain an invisible illness when, in her own words, "You look so normal!".......

At war with my mind

 I woke up this morning at 5:20ish AM... I can't even tell you what I dreamt about because I can't remember. The only thing I know is upon opening my eyes I was greeted with the hellish reminder of my condition. The first thing I usually see is the rotating fan above me that appears to move in scenes every single time my eyes move. This symptom is called Akinetopsia - or better known as motion blindness. I know I have talked about this before, but I am talking about it again because, well, this is my blog and I'm pissed off!

 Akinetopsia is very rare.... Visual Snow is very rare. There was a study that came out not too long ago called Palinopsia Revamped. The study talked about Palinopsia, which is usually explained as seeing trails behind moving objects such as a persons hands or a moving car. I have been experiencing this since 2009. I even remember seeing a trail behind my hand one time as a teenager, but my thought was "wow, that's pretty cool" and I never gave it another thought and never seen it again until 2009. This article touches on Akinetopsia and categorizes it as another form of Palinopsia. That was a relief for me to see because it meant, to me, that I wasn't dealing with something else along with my Visual Snow. It even mentions how Palinopsia often times goes along with Visual Snow.

 The person/doctor/researcher who published this study was not anyone I have ever heard of, but they did a good job researching everything and putting it together. I just wish their was an explanation. I am so tired of the studies coming out telling everyone, "Hey, this rare condition exists", but not giving anyone a hint of how to fix it. I know what I have is rare.... Disability for some reason doesn't think that. To them I am a free loader who is capable of working. That is a whole other topic.....

 Back to my original rant. I woke up at 5:20ish and well, ya know, it just sucks to have my first thought of the day to be about how I hate having to deal with this condition. It shouldn't be that way. Things like suicide and trekking on with my life, sucking it up and dealing with it... those thoughts shouldn't ever cross anyone's mind. How is it that we live in a world today where they've sent people to the moon, but yet I have to wake up and feel this way because I have been isolated in a condition that no one understands. Neurologists are so quick to dismiss you because you have something they don't want to deal with so they want you to be strong and deal with it. I AM NOT CAPABLE ANYMORE!!! I am TIRED of seeing all of these normal people hang out with their friends and family and laugh and share stories about their nights and the things they get to do when I am a prisoner of my own FU#@ING BODY AND MIND!!!! I am 32... I have wasted 7 years of my life with this condition. I have lost countless numbers of friends because I am not capable of having a normal life like them. I can't drive far, I can't drive at night, let alone see at night. I am a body that looks so freaking normal on the outside, but am being tortured every second that I am awake.

I was explaining to my church group last Wednesday about my condition after someone asked and a woman next to me asked me to come to a Mary Kay event with her at 6:00 PM the following Monday. After I explained it to the group the same woman looked at me and said, "Well you look normal!" This is the response that I get time and time again. It literally feels like this is punishment of some sort. Like I am living in actual HELL. I don't see Satan and it may not be hot, but believe me, it's Hell!

My one release..... driving... I can no longer do. The cars and their tires, they do the same as my ceiling fan. Bits and pieces of the scene.... it also makes me dizzy to see this. Yet... I appear normal, so therefore I am normal........

I have never kept my faith a secret.... It's hard... it's hard believing in an all loving and compassionate God, while I am allowed to go through this. I know there are so many more who are going through worse, and that is a reminder to me that we are in a temporary place and temporary body.... It just angers me. Why couldn't I be healthy.... and this condition be placed on someone less deserving like a criminal of some kind... a murderer. Why is this happening to me? Why does my son have to have a mother who can't do everything that someone else's mother can? Why does my husband have to have a wife like me who can't do the things he wants to do... and hell, all the things that I want to do? It just doesn't make sense to me. I just want it to make sense... I want the answers.

The study isn't happening at all right now.... we are waiting for it to happen, but it won't until we raise the $50,000.00 needed. Until then.... this is what I go through, and countless others. We wait.... life keeps passing us up... yet we wait.

A day of rest

I would love to have one day that I didn't have to wake up to the realization that I have  a neurological issue - that I have a rare disorder that has no known cure! It would be wonderful to be able to check my email without seeing some type of confirmation of my misfortune. I can only distract myself so much during the day to get away from this reality. I feel as though I am being punished, or literally living in a hell that I created some how. It's very odd to think that way, isn't it? Hell on earth.....

I can only hope and pray that we reach the $50,000 needed to start the research again. I also pray that the researchers will give 100% of themselves toward finding a treatment. It's bound to be out there, but it has to be found.....

Missing out and fundraising

 I kissed my husband and son goodbye this afternoon. They are off to a wedding in Michigan without me. I will be alone for four days. I've only been away from my son twice. Once was when I flew out to California to be in the Visual Snow study and the 2nd time was when my husband and son flew out to Michigan for Christmas. I miss out on a lot of things because of Visual Snow.
 I know that 95% of those with visual snow have no issues when it comes to traveling, but as I've talked about before I recently within the past year acquired a rare symptom that sometimes comes along with visual snow and it's where I can not see fluid movement in my peripheral vision. I am fine when I am at home or at a place without fast movement, but being in a car or attempting to drive is pure hell. It almost feels like you are in a tunnel because you only have a small portion of your vision that isn't peripheral when you are driving. So things that are even farther away use even more peripheral vision and there for most of my vision is filled with movement that is only happening in fragmented scenes. I know that it isn't going to hurt me, but my brain is constantly thinking what the heck and is trying to make sense of it all.

 I have still been trying for disability, but apparently unless I'm dead I'm not eligible to receive it. If you've ever seen a disabled homeless person I am thinking this may be where it all started. I should had been a baby factory a lived of the government.... I would have had a better chance at having some sort of income as apposed to getting SSI for a true disability that the folks at the social security office keep turning me down for.

 Anyways, I can complain all day until my face was blue about disability and about Visual Snow, but I won't. I just want to mention for anyone who is reading my blog, if you haven't yet, please visit the Visual snow fundraising site n gofundme at www.gofundme.com/Visual-Snow and donate... even if it's $5.00 any little bit helps. We just started an instagram and will be having an auction on there soon and all proceeds will go directly to the visual snow research. The instagram user name is Help_Cure_Visual_Snow - so please add it and share it with you friends to let them know about the upcoming auction.

 We need one more brain imaging study to be done and I've already been told by Dr. Schankin himself that they have several treatment options in mind, but this brain imaging study has to be done first. They've located the area in the brain and I am assuming (only assuming) that they need to look into that area further to see what treatment will work best. So, again, if you haven't yet gone, or if you are not familiar with Visual Snow and just stumbled across my page, please donate for a good cause.

God Bless,
Candi