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

Visual Deficits are the hardest to treat.....

So before I get into my appointment that I had today with my migraine specialist at USF I will fill you in on my appointment last week with my neuro ophthalmologist.

 Several months ago he seemed really excited about the visual snow study so I took the time to get nice colorful folders and put every single study I had into them along with a print out of my symptoms. I handed it to him after I sat down, he briefly skimmed through and asked me some questions about it. I showed him where they said the error is in the brain and some things about treatment, etc. (There isn't any) - all he did was raise a brow. I then proceeded to tell him I am trying to get disability at least until there is a treatment and that was when he became more alive. He said it's difficult for me to get disability because there is no evidence that anything is wrong. I am 20/20 on all vision tests and nothing shows anything. I mentioned the study. He said it's too new to prove anything. It's only research..... ::Scratching head:: He said he would try to help in any way he could... so I handed him the paper my lawyer asked for him to fill out... he said NO. Then proceeded to tell me the lawyer needs to send it to him directly and pay a fee. He said I shouldn't be the one to pay it since the lawyer will take money from me if I win the case. I guess he doesn't realize that $30.00 is chump change compared to the thousands I've spent trying to figure out what's been wrong with me for the past several years?!? The biggest insult was when he suggested I try botox for the issues. Because clearly he can correct an occipital lobe problem with botox.... oh and also fill in my frown lines from all of this disappointment!!

 Don't get me wrong, this Dr. usually seems more interested in all of this stuff. Out of all of my Dr.'s he's been the one that I've felt would be the biggest help with setting my mind at ease, but no. In the end he wants me to see the vision therapist again (She is awesome!!) and see if any of her testing machines can give us evidence of a problem.... I hope it does! Oh and when I left... my colorful files were with his nurse being filed away........ :(

 Now for today's visit with the migraine specialist. I started my trip to see her with a bunch of rushing. My father, his girlfriend, their kid and my son all tagged along. I needed him for driving support.

Anyways, before she walked in I realized all of the colorful folders I made her were left in my car which was now with my father. When she entered I let her know this info and told her they each contained a study. She proceeded to tell me that someone already sent them to her. (That someone was me, and it wasn't the two main studies that she needed to see).

 I let her know the area in the brain where they think they've located the problem. She said they've always known it was there, but with the new imaging they are able to pinpoint it which is good. She seemed surprised when I told her that my symptoms are 24/7.... I've told her this before... every time I visit :)

 I told her about my most recent symptom (it's one year old now) and how when I am walking or driving or in a car that anything in my peripheral seems to skip and is missing frames. She called it a deficit and said it isn't easy to treat like a positive phenomenon would like visual snow or afterimages. So... that was bummer, bummer crappy summer right there! That's the kind of news that makes me want to take a long trip off the side of that 6 story building. (Okay, I am kidding, but it wasn't pleasant... she didn't sugar coat it for me and I like sugar coating sometimes.)

 So, she suggested I try an epileptic for the positive phenomenon, which I told her I was afraid to do, so she told me the reason I am afraid to do it is because I keep telling myself it will make me worse. I did tell her last time and the time before that a lot of this stuff started after I stopped medicine and started medicine... there is a real reason behind my fear. Anyways, she is just increasing my verapamil since I've been taking a baby dose, so now I will be on 80 mgs every day. We had to watch my blood pressure last time because it's been 90/60. Today for some reason it was like 120/68, which I've never seen before. I can always come up with some irrational fear as to why adding 20 additional mg's of verapamil will cause my blood pressure to plummet so low.... but I guess I have no choice.. I've already taken it so we will see.

 There ya have it... my appointments. I am pretty much in the same boat I was before going to both of these, but $150.00 poorer. :)

 All kidding aside, I hope I see something positive come from the medication increase and maybe something also will show up on the vision tests.

Update to my last post

 A very wise woman once told me "If you get angry or upset, walk away and give yourself time to calm down before reacting". I think that is what I forgot to do earlier. I know I could have easily just erased that post and no one would have ever known, but I wanted to keep it up to remind myself to next time take a break and cool down first.

 I know in my heart of hearts that my friend had no intention of upsetting me, and truth be told maybe I upset easier than most people. But now that I've had time to relax and think about it more I can now react. It's actually a good thing that this other study came out. (I don't have a link for it, but you can google - Palinopsia Revamped: A Systematic Review of the Literature David Gersztenkorn, MD, MS Andrew G. Lee, M - to find the study. It's actually a very great report. Yes it combines other studies, but this is exactly what we need. We needed a study that referenced other studies so that one could look at the picture in a whole and not fragmented with too many what if's.

 For about a year now I've felt like a "What if". I've felt completely separated from others with VS because only a handful of others, that I know of, have this wacky peripheral vision like I do. And fewer than that have it in their central vision, which scares the utter crap out of me. I know that at any given time this condition can get worse for no rhyme or reason. But, back to my point - This Palinopsia study (which yes, is only one of my many symptoms) explains several different types of Palinopsia and one of those types is most similar to what I experience in my peripheral vision during fast movement, such as cars passing. It's called Visual Trailing, aka Akinetopic palinopsia. It is often described as stroboscopic vision. Motion appears fragmented and afterimages are left at the previous location where the moving object was observed. The only difference with this however, is that what I am seeing is not an afterimage, per se. My peripheral vision is just fragmented and is missing several frames.

 So, you see, this actually ended up making me feel better. Palinopsia is most often associated with Visual Snow, and to now see that my strange symptom that I thought wasn't related, be classified as related, makes me feel like once Dr. Goadsby and Dr. Schankin figure this stuff out, that my wonky peripheral vision will get better too.

 Okay, so there you have it. When you get upset, take several hours or even a day to sit back and let it all process before you react.

xox
Candi

Did I do it all for nothing?

 The whole reason why I left the Facebook Visual Snow board is because of the constant anxiety that could be felt from almost every single post. I was not mad at anyone for posting the way they were feeling, I remember how scared I was in the beginning, I just chose not to put myself around that anxiety anymore since I am a very receptive person. It helped me tons with coming to terms with this disorder. The scariest part of all of this was not knowing what was/is causing this. I know that all of us are very different, no brain is the same, so what may work for one person, may not work for another.

 When I was asked to participate in the visual snow study I found myself in a very surreal moment. I felt the fear rising in me and experienced every irrational thought one could, such as the plane crashing, the testing causing more symptoms, etc. On the other hand I felt this deep concern that had I not gone for this once in a life time opportunity to be in the study, that I would regret it for the rest of my life. I also felt that had the Doctors found a similar mechanism in all of us attending, that it could mean the possibility of a similar treatment for all of us.

 My point to all of this really is - Lately with rumors going around about other possibilities - that VS facebook members are coming up with, and other studies being done by other doctors, that me going to California was all for nothing.

 I feel like, WHY? Also, how dare?!? How dare you people take for granted those two doctors who have gone out of their way to devote their time to seeking out the why's and how's of visual snow. Why can't you people wait until they are finished with their studies before you start moving on to someone else's theory? It makes me down right mad! The study that I read today simply took other peoples work and placed it into their own report. Most of it I had read before and some of it made no sense at all to me. My money is on Dr. Goadsby and Christoph Schankin finding the answers. This is where my prayers are going and God has brought me here for a reason. I met those Dr.'s and seen the determination on their faces. Don't rain on my parade, PLEASE!

 This past month has been one of the best months I have had in many years! My migraines have been far and few and I am turning 32 tomorrow. I usually don't celebrate much for my birthday, but dang-it, this year is MY year! This is the year that something good happens in the face of VS!!