Visual Snow Study

So tomorrow is October 25th 2013- The day that Dr. Christoph Schankin will be announcing the result of the study I participated in. For the longest time I was regretting this day.... maybe because I am not expecting good news... or maybe because it makes it official that something is wrong with my brain. Both of those are scary things to me. I am not getting my hopes up that anything was really accomplished from the study. I know rumors are getting tossed around left and right and most of the things talked about are ridiculous and I HOPE are not true... (I am speaking in terms of treatments). Out of all of this... I just pray that there will be a day soon where I can wake up and just be normal. I want to be able to see normally, think normally, hear normally and feel normally. I want to be the person I was 7 1/2 years ago. I want my life back!! I want to have another child and be able to give my all to him/her. I want to be complete and whole and more of a mother to my son and the same for my husband. ::Deep Breath:: I know God will take care of me no matter what.... I know he will take care of YOU no matter what too. I haven't written in a very long time, and so when I finally picked up a pen the other day, I was beside myself with what I wrote. It has to do with what I experienced when I was younger- growing up. My mom struggled with depression all the way up until she died. She also had an undiagnosed illness which she always worried about. This is what I wrote: I was just a child when my world changed she was just a mother in pain I am just a mother in pain he is just a child, his word changed I couldn't believe it... but am glad I wrote it. It will always remind me that I am what my child see's. I don't want to be a miserable dim light to my son, I want to be the world to him like he is to me. I have to find that light!!!

Lymes testing and more

So I got my blood drawn through my Naturopath's office on Wednesday morning. It was sent off to Igenex that day. I am feeling a little so-so about the test. I honestly am not expecting anything to come back showing Lyme. I just wanted to rule it out since I had the positive Elisa. My next test I was to do is the co-infections to see if I may have something. I know that thing like CMV can cause a positive Lyme Elisa, so I want to get tested for that too. Also there are other things too that cause trip it into a false positive. I go to see the vision therapist tomorrow. I am hoping she has some exercises that she thinks may help me. I have some other odd symptoms I have found too that I am going to share with her. I have self diagnosed myself as having visual dependence. I think my eyes have taken over for my ears. That would explain why I am not stable when I close my eyes. I have very good night vision, but as far as my eyes go, it's tough.

The mind that plays tricks

I have been hearing a lot about how your mind can do radical things. Just by thinking a single thought your brain actually recognizes those thoughts. If you keep thinking the same thoughts the brain connects those thoughts as normal. So say you are anxious and worried about a health condition... chances are the more you think about it, the more likely it will happen. For me it's been this vision stuff going on. Because I only experience it when looking at moving cars I have kind of been the odd man (woman) out because I can not find any information on it. But looking into the board for Visual snow I found a few people with symptoms similar, but more distressing. So... I automatically labeled myself as having that problem. Even though it is literally 3 people out of 1,300 people. Chances are that is not what I am experiencing, but because I have been thinking about it, I have been training my brain for it, so now I question every little thing I see. My boss came in and asked me how I was doing today. This of course caused me to start crying. I thought I had big issues a few years ago with visual snow, but this one takes the cake. IF it is what the few people on the VS board have then that would be crappy. To not see in fluid movement would just be pure crappiness. I know the study results will be out soon, but I still see VS as permanent..... that is just a part of my brain that has been through enough.... I have had enough! There is a part of my brain that is staying hopeful however and believes a cure is coming. This part of my brain also believes that what I have going on with my now is strictly from my vestibular issues. I have been trying to hunt down this episode I watched on mystery diagnosis the same year my mom passed in 2009. I don't know when the episode first aired though nor what it was called, but the guy had the same thing my mom had. It was some type of rare infection in the brain that caused lesions and I believe he was having seizures too. I wanted to look more into this to see if maybe I have it too and am thinking maybe I am having absent seizures? I dunno... I am just so tired of being sick. I have sat back and watched all of my friends move on in life having so much fun with their family and here I am stuck. I am an observer.... I see my sons smiles and I just think about how I could be a better mom to him if only I was better. Why did God give this to me? And more importantly why hasn't he taken it away from me....... I just want to get better!

Verdict is in..... Nystagmus caused from a decompensation of my vestibular system

So, I have been looking around on the internet trying to find what i can mainly about my vision issues. (seeing cars kind of wiggle while in motion). I have heard this called frames before and have made the mistake of calling it that because that is not what it is. The cars literally wiggle back and fourth in a jerky kind of movement. It's like my brain is capturing the image but shaking it very slightly. If I watch a bunch of cars in a row moving, oh well, this is scary. Everything starts doing the same but it feels and looks like everything is going in fast motion. Well my neuro-otologist said Optokinetic Nystagmus. My Neurologist/headache specialist said optokinetic nystagmus. And I said - I DON'T HAVE A NYSTAGMUS! I have recorded myself (stopped st s red light) watching these cars pass and see no jerking. I consulted a well known vestibular board who has a Dr. who usually comments on members' posts to lead them in the right direction. He told me he thought it sounded like nystagmus. (3 Dr's claiming nystagmus - Zero Bilateral Vestibulopathy patients telling me what this is.... maybe because it's rare and I haven't had any luck finding any). So I went to my Neuro-otologist looking for some answers. He told me he has heard of it before and to stay off of the message boards. He said the worst people are on them (those suffering with their health conditions- but it makes sense, because they are looking for answers). He told me some nystagmus can not be seen with the eyes. They would have to use special goggles to pick this up. He didn't offer to do it, but reassured me it was normal and that I need to start doing my VRT again and also he agreed that some Vision therapy may be helpful as well. He said the brain just needs to re-compensate. So I left with new-found hope! Today was a little down as I started having negative thoughts about this getting worse or turning into something else, but then I remembered... I am going to get better, not worse. I am going to beat this!!!!

Stool sample

Wow, I said it.... Stool sample! I am going to take a stool sample!!! I grew up in the era of Beavis and Butthead so I am not, as one might say, prude. I was raised in a non modest family. Here's an example.... our family thought it was funny when any time someone was in the shower or using the bathroom that we would fart on the door so that it would echo very loudly. (Wow, I just said that too) Now that I got that out of the way.... I am taking the stool sample mainly to check for candida, but also because I have been having issues with diarrhea (cha, cha, cha- you knew that was coming). I have had it for well over a month and 1/2 now for no good reason at all. Not that I can justify a good reason for having diarrhea (cha, cha, cha). So you are given this plastic-ish type french fry tray that you have to literally poop on. (put your gloves on first) Then you use the enclosed plastic spatula to dissect your poop in three different areas and place those portions into assigned plastic tubes. Once that is done you pack it up and call the FED EX man to come pick up your poop! My husband will have three of his life long friends in town this weekend and I am planning to do my "specimen collection" then. No, I did not plan it that way, it just happened to "fall" on that day. Okay, enough toilet humor.

I will not feel sorry for myself anymore!

Today my best friend, who oddly enough has visual snow too, messaged me about how she got in some travel brochures for visiting Patagonia, South America. She said I should go and she felt it would help me get over my fear of flying. My first thought is I would totally go "IF" I didn't have this new symptom of not being able to track fast cars. It would be my luck to go there and my vision get worse and I wouldn't be able to track anything. Now, logically if I sit back and observe this pattern of thinking I can see that this is a catastrophic way of thinking and by all means isn't rational. I mean, I have been close to the same for over a month with just a little worsening, but some days are better than others, so chances are going somewhere isn't going to make me worse. Now on the other hand the stress from flying could make my symptoms worse, so I refuse to go.... now that is a better way of thinking. Some may say that is crazy and just go, but it isn't that simple. I have been telling myself for the past month that this is so awful to be going through, why me, what is the point of living... yada yada. Then I would end my night by reading scriptures from the bible. How can I change my life around to get closer to God and here I was doing the opposite of what I should. The church is always talking about serving and helping others and my first thought is always, "I would if I didn't have such and such problem." I should be putting myself in the shoes of those who are needy. Those who are blind and would kill to have my vision no matter how screwed up it is. There are children who lose their eyesight because of health conditions. BLIND!!! I am not BLIND! My perception is altered and skewed, but I am not blind. To have these thoughts that I would rather be blind to not have to see what I see if absurd. It's not rational thinking, it's catastrophic thinking. It's me thinking of the worse. I am still able to see my baby boys smiling face every day. I am still able to see my husband and family. Heck, I am still able to work (as much as I don't want to). I will not feel sorry for myself anymore. Yes I could worse, but most importantly I COULD get better. I was setting a limitation on myself not only with my abilities on what I can and can't do, but I was diagnosing myself as permanent and nothing is too permanent for God. I read the bible and see stories of healing and never put myself in the their shoes or ever thought that I could be healed too, but why not? Why couldn't I be healed just as they were. Jesus health the lame, blind, sick and DEAD! I am healed!! "He himself bore our sins" in his body on the cross, so that we might die to sins and live for righteousness;"by his wounds you have been healed." 1 Peter 2:24-25

Upcoming appointments and Alternative testing

So Wednesday is the day I see two very important Dr's. These Dr.'s are either going to leave me extremely frustrated and depressed or give me some great hope that i am not going crazy. It will most likely be the latter of the two since I usually eave frustrated and depressed. So why am I going back to them do you ask? Well because they are the best we have around here. I do have a back up plan, however. My next step will be to visit the university a few cities away. That is where I go for my migraine treatment. Last time the reasoning behind my newly acquired jiggly vision was from Optokinetic Nystagmus and visual vertigo. For one I do not have a nystagmus and for two I am not dizzy anymore. The pieces just do not add up. On another note I ordered 5 tests to be done (alternative tests that a lot of Allopathic Dr.'s will not test for: Hair Mineral Testing Stool testing for Candida and parasites Blood mineral analysis Female hormone testing via saliva Neuro-Adrenal testing via saliva I just completed the neuro adrenal testing and am sending it off to the lab today. I will do the stool test on Thursday and the hair sample testing on Friday, as well as the blood testing on Friday. My monthly cycle should start on Saturday so when I will start the hormone testing- so that will complete everything. I know my migraines are completely influenced around my cycle, so there is def. a hormonal component to this mystery. I am also waiting for some paper work to come in the mail so I can schedule an appointment to do Lyme testing. It's been frustrating as I have contacted this office for a few weeks now getting told information will be sent out and it never does. I know Lyme is very controversial, but don't leave a patient hanging!

Alone in a world full of healthy people

When you are born into this world you don't know much. Only instinctive things like breathing, squinting at bright lights :), etc. As you get older you learn things, you become attached to people and things. You are happy and sad, but never think twice about these emotions. You get sick and you know you will get better soon either on its own or with medicine. These are things you've learned and know. But what happens when you get sick and no one knows what to do. I can only explain it being like the first person diagnosed with AIDS (even though it may not be deadly). Dr.'s didn't know what to do. I imagine some didn't even care what to do because it was our of their scope of practice and wasn't in their book of ailments and treatments. I feel a bit like this every day. When I first got the visual snow and the Dr. and I approached the Dr. about it... she didn't want to listen to me. I asked her if she had heard of it before and she said yes, but in people who use drugs. "Well Dr. you did prescribe me a legal drug- Zoloft." Not getting any help for my Dr. I resorted to searching the internet. I came across a yuku forum with a dreadful dark brown background that screamed horror. When I posted my symptoms I was immediately branded into the group. I wasn't told about the things this could be and to get checked for... I was just told "Yes, you have it, sucks to be you, but you are not alone." I DID NOT WANT TO HEAR THAT!!! First of all I am a woman... I am not a man. I have emotions and need to be soothed when I am scared. I know this wasn't their job, but it would have been easier. Anyways - So I had visual snow. I started on my quest for finding out answers, all the while telling myself I couldn't live with it. I had a new born baby and I wasn't functioning. I didn't feel attached to him nor anyone else. My family seemed so foreign to me. Here I am almost 4 years later and I did indeed learn to deal with it. I even accepted it as my new normal. I am not as disconnected to the world as I was back then. However, something is changing. After being diagnosed with the Bilateral Vestibulopathy and doing the VRT exercises and then ending up with the weird vision - I have learned yet again from the visual snow board that I am getting worse. It seems others have my symptoms- I am not to the degree they are too (yet), but will be in a year or two. I constantly am aware of my vision now and am ALWAYS second guessing what I see. I keep telling myself if this gets worse I do not want to live with it. Then I think about my baby boy who is turning 4 this year and how I want to be with him. I pray constantly even though I feel like no one is listening. I hear that God can move mountains, but I feel like my mountain is just too big. I still have the longing and hope that I will be free one day of this disorder and everything that goes along with it. That my little boy will know this life with the person who I truly am, not an empty shell of who I used to be. A month or more ago I started feeling really good about life and just as fast as that happened is when things started getting bad again. Last night my dad came over with his "new" family and I felt so out of place. I kept getting these waves of feeling unreal and that is awful... I don't even want to feel that way again. The bible talks about healing and how people should lay their hands on the ill person and pray for them. I want that so bad. I mentioned it to my husband and he didn't offer to do it. I guess it's too traditional for him? I can't help but shutter in the realization that he doesn't feel the same way I do. If it were him or my little boy who were sick I would be praying over them and for them constantly. I would be doing everything I could for them. What makes me so different? God help me.... I just want my old life back. In the meantime - the study I participated in will be releasing results of that study I was in later this month on the 25th. I was scared for so long because I had been content with my illness and I was scared it would show damage and bring me back out of the contentedness and bring with it fear. However, now I am praying they have found something tangible and that they know what they want to do to treat it. I pray it works! "He himself bore our sins" in his body on the cross, so that we might die to sins and live for righteousness; "by his wounds you have been healed." 1 Peter 2:24-25 HE died on the cross for our sins and by HIS wounds WE HAVE been healed.