Screw you Social Security Disability

Yes, I said it!!! Screw you!!! You and your panel of HEALTHY employee's found me capable of work??? Step into my shoes you bunch of greedy, ignorant people. If you were in my shoes for a minute you would grab the nearest object with a sharp point and dig out your wrists. I have dealt with this crap for 8 years! Of course I have some level of function... I have stopped myself from committing suicide... does that deem me functional? Or is it because I won't swallow your Rx of happy pills which probably got me in this situation in the first place. Explain to me how a person whose whole field of vision is cluttered with static, see's trails off of passing objects and afterimages after most things you look at, who can't stand to be inside a moving vehicle because the speed makes her dizzy and her peripheral vision looks like I am on a merry go round, can work???? What the heck can I do? Should I go be a nun? Yes, I could probably do that.... is that what I am capable of doing you bunch of ignorant baboons! Because you can't physically see my disability that deems me non disabled???? You think this is what I want to do with my life? I would much rather be healthy and able to be at the beach soaking up some sun, or traveling this beautiful world! Instead I spend my days stressed out over what I am unable to do because of this stupid disorder that I was so freaking lucky to wake up one day with. Thank you, thank you, thank you! You people are wonderful and I can only imagine how many people are out there suffering way more than I am and you lousy group of fart tarts have denied them as well. This migraines on you!

April is here.....

So this is the month, April,.... the Visual Snow study results are supposed to be released sometime this month. How do I feel? Depressed, anxious and scared. I say depressed because it's still hard for me to believe that I am going through this rare disorder. I just can't seem to wrap my head around it. How I was normal one day and the next not. I say anxious because, I participated in this study... this is going to show, or may show, what exactly is going wrong in my brain and others with VS' brain. I say scared because the results could come back with really bad news. This is a make or break it thing for me. It could say there is some kind of damage they found or something irreversible going on. One the other end of that though they could have really great news that could give us some hope and something to hold on to. I sometimes try to think about the things I would do if there is a treatment for this. Some people do just fine and are still pursuing their life's dream, my VS however has gotten worse to a point where my tracking of fast objects is delayed. My dreams have been placed on hold. If here were a successful treatment for this I want to visit London and travel by train. It is something I have always dreamed of doing. I am a little, maybe borderline, obsessed about all things English. After that I would travel all of Europe. I would then come back to the states and travel here. Deep down I feel like as long as I can hold on hope to fulfilling this dream, then there is a chance that I can get better. God willing, we will all get better.....

Hyper aware - Majority rules

So, I have since seen two very brilliant Dr.'s regarding my peripheral vision and why I see things jerking/lagging and not smooth as I did before. The first Dr. said this is normal, however it is not normal to see it as I do. The best way I can describe it is almost like watching a flip-book comic. Sometimes it's not noticeable, but other times it's hard to ignore. The second Dr. told me everyone has all of these things with their eyes, visual snow, after images, jerking vision (Saccades and smooth pursuit vision) however "Normal" (He didn't want to use that word, but I said it was fine as I know my brain isn't normal) peoples brains filter all of this "noise" out, but in my case and other peoples cases, typically in close head injuries, this filter stops working. Both Dr.'s say there is nothing they can do. If it gets too bad with the jerking vision one said he could try to treat it... he didn't go into how. At the moment we are waiting for the Visual snow study to come out to see if there is any clues as to what is going on in our brains. Then at that point we can move ahead to see if we want to trial some different medications. I am applying for disability at the moment, but I don't know if I will get it. After all only I can see what I am going through with this curse of an illness. My biggest problem now is still the fear that this will get worse. My 2nd Dr. said he doubts that it will get much worse. I have heard some horror stories however. The mere fact that I am having this peripheral stuff is scary because this particular symptom has only happened in several other cases out of hundreds and hundreds of people with visual snow. So why was I the lucky one? Well, it could be the fact that when I was 4 I was kicked in my head and fell backwards hitting the occipital part of my head requiring stitches. From that point on I have had sensitivity to my scalp just like a person with migraine disorder would have. I also would get car sickness frequently and vomit. Then the migraines started when I was about 10 or so, they rarely happened though. By the time I was in my early twenties I was working out regularly and rarely had a headache. Then this Visual snow stuff happened after a migraine and now all of a sudden they are here and fiercer than ever. Could this be why I have Visual snow? God, I hope this study shows something that can be fixed. This hyper awareness stuff is for the birds. So I think these Dr.'s are right. I think there is something going on in the brain that is shutting off the normal filter that keeps us from noticing all the visual noise and even the sounds like cracking in our ears.. things that I now hear. Maybe there is an over stimulated area and a hypo functional area that isn't getting enough stimulation. Either way, God willing, we will find a cure. I am 31 years old and am not ready to give up yet!

Heterozygous A1298C MTHFR mutation and HSV6

I forgot to mention that I had this show up on my most recent blood work. I can't find too much out about it, but apparently I don't absorb B12 or Folate too well and I also am unable to detox as well. I also found some conflicting information that this is a common mutation... so who knows? HSV6 was also positive and still active, which is strange... it says 100% of the population will come into contact with this virus, but mine showed as past infection and present. Not too sure what that means.

Waking up feeling down

Lately it's been fear in the back of my mind 24/7. Since this new symptom started it's like getting Visual Snow all over again... fearful of it getting worse... hearing stories of it getting worse and knowing just how bad it can get. I have come across a couple of people who have the same symptoms, but it looks like they've gone on to college and graduated and never responded to their original posts. It gives me a hope in a sense, but I still can't stop thinking about the "What if"! I really wish the Visual Snow study would be published already.... I am so scared it will not show anything, but the fact that they will not release any news on it until it is published tells me they must have found something! God, how I pray they find something... something that gets us either closer or right face to face with a treatment. At this point if they told me to eat dog crap and it would make me better, Put it this way, you wouldn't want to come to my house! My migraines have been showing up again, but I reckon that might be due to me getting closer to starting my period although you never know when it comes to my migraines. They started with this Visual Snow BS and haven't left since!!!! Dang this visual snow and the hell it brings. I couldn't imagine having this my whole like like some people do... I just can't imagine! I guess in a way it would be good because they wouldn't know what normal vision was like and maybe they are saying I can't imagine getting this later in life. You know what sucks the most? My health went to crap at 24 years old. I worked out 5 days a week, had an active and fairly healthy lifestyle (Active beach bum), but was just under a lot of stress. Why did the Visual Snow hit 3 1/2 years later. I guess it was a little before then because I saw the blue entopic phenomenon, but still.... why did it slowly progress? Yes I was having migraines every now and then, but nothing major like I do now. I wish Dr.'s could just figure this out. I wish a Dr. would be truly captivated with this disorder and find a tried and true treatment. God, I hope that is Dr. Goadsby. I want my life back. My son is already 4 and I have never been normal around him. He doesn't know me as I used to be... free spirited, fun, loving, passionate... now I am just a stone cold empty shell of a human being who he calls mama. That sucks!!! So yea, back to my original post... I wake up feeling so depressed... It isn't a way to live. I hope it goes away soon... I just hate life like this..... It isn't life at all... it's wasted life..... I just feel like there is a barrier between me and the world... like all of my working brain is secluded to a small area.

Updates

So I haven't posted in a while, mainly because I have been scared as all get out over this newest symptom. I have been plaguing myself with anxious thoughts about not being able to travel, not being able to drive my son anywhere, etc., etc. Yes, I still have those moments, like tonight, but I have been having some decent days. I did recently leave my job after 8 years and that sucked. After that amount of time you get pretty close to everyone and they start to feel like family. I miss them a lot, but I have faith that there is a reason that my journey called for leaving the company. I am now applying for disability, but not expecting to win it, why would I, they have no clue what visual snow is let alone what the heck I am going through... that is what makes this diagnosis so complicated. My own family have no clue because I look so dang healthy on the outside. Even when I have horrible migraines I still appear normal on the outside... well almost. I guess I just wanted to come on and say... I am still here. I am still fighting this fight with an unknown opponent. I am still waiting for the results from the Visual Snow study to come out. I keep thinking... how did I get that chance to fly out and participate and more so how did I get visual snow. There has to be something good coming our way.... I can't explain it.. even on my worst days I still have a lit glimmer of hope that says we are going to get through this. To have my life back.... a million thank-yous wouldn't suffice. A Billion tears over an indescribable joy would be where I would be left.... I try to imagine that day and make it present. Here's to getting better!!! God Bless, Candi

Updates

So I am still here... not really doing much in means of treatment for Lyme. I am waiting to hit the lotto! I have the flu or had the flu which left me with a sinus infection. My vision is worse some days and better on others. I am still living in fear of this getting worse and wondering how I will get on in this world watching people who appear to be normal... heck... I appear to be normal, but you know what I mean? To think at age 24 all of this happened to me and I haven't lived my life the way I would be if I didn't have this horrible condition(s). I just wish someone would be willing to run extensive tests on me, study my brain, do something... I just pray that I can get my life back one day and truly get to live it. My vision therapist is very pro active to finding a resolution for me and I love that about her... I just wish I trusted that it was possible to help me by just wearing lenses and having vision therapy. I mean it's my brain that is producing the problem.. I am still waiting to hear back on the visual snow study... no news yet...