It has Been a Rough Day …

Wow. Today has sucked! I am going to keep this short because I just don’t feel well. My day started a little after 5:00am; I woke up with a killer headache! It sucks but it happens. I got up and drank some water and took some Advil because that is what I had in my room. I sat there for a while wondering if I should just get up or go back to sleep. Then I started feeling nauseous so I took some Zofran and laid back down. I stared at the ceiling as the nausea grew worse. I have dealt with nausea many times since my diagnosis but almost never have I thought “wow, if I move I am going to throw up” but that is all I could think. So I didn’t move. I just stared at the ceiling waiting fir… actually I don’t know what I was waiting for. Around 6:00 I was feeling a little better but my head was still killing me so I thought “a cold shower will probably help my head a bit” so I continued to wait because my super sensitive hearing let me know that someone was in the shower. I heard the faucet turn off and shortly after that the bathroom was vacated. I sat up, grabbed my “I am about to shower” stuff, and made my way to the bathroom. I turned on the shower and all of a sudden the nausea came back. I closed my eyes for a second hoping I could will it to settle. I took a deep breath and- nope. I threw up. I never loose my stomach to nausea! It made no sense to me! Maybe I drank that water too fast? Bad food last night? I have no clue but I didn’t care because I felt better. I took a shower and went back to bed. I don’t want to say I was exhausted but I definitely was not ready to get up. When I did get up a few hours later I felt so dizzy! I could not see strait! I mean my vision has been bad for the last couple months thanks to Nystagmus and Oscillopsia but everything was even worse! I could barely walk! So I sat down in front of the computer, checked my email, my Facebook, watched some Hulu, read a few articles and that has pretty much been my day.

My head still hurts but not nearly as bad as when I woke up. I just had some coffee and that helped my head a bit and gave me enough energy to sit here and write but I am still so dizzy I just… I can’t do anything and part of me wonders if this is my latest version of “normal”. Will I ever see and walk straight again or should I already sell my brand new car? Part of me really feels like giving up, I can’t lie, but then that stubborn part of me kicks in and I just can’t. I don’t know what to do or what I can do but I am not ready to throw in the towel as easy as that would be. By the way, I have been trying to get my blog back in shape so I have no idea when I will resume writing as much as I should because it’s a lot of work going through all the HTML and organizing everything. I hate HTML and now I hate it even more because I am trying to sort through lines and lines of code with this crappy vision. Anyways, be sure to read up on my stuff on
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Still No Change In Vision

It’s been difficult lately. I realized I am facing a new obstacle. An obstacle I have no idea how to properly face. The loss of hope. My vision (oscillopsia and nystagmus) is not improving; in fact, it seems to have got a bit worse again. I can’t remember (nor do I want to look it up right now) the numbers regarding how long a symptom stays around before it will probably become “permanent”. Some symptoms heal like a cut, leaving no indication anything was ever wrong with your skin, and scar over leaving a permanent reminder of that wound. Only the scars in my brain are not a simple “visual” reminder but a symptomatic reminder that affects my daily life. Off the top of my head I am not even sure how long this has been around but I know it has not been a matter of weeks but a matter of months and because it has been long I am loosing hope. Motivation. Energy. Will power. I have not been wanting to wake up in the morning. My alarm goes off at 5:45am and I get up to turn it off only to lie back down and fall back asleep till about 8. Everyday I sit here and kill time while I count down the hours till I can go back to sleep. The 8 hours I get to close my eyes and dream, 8 hours of life where the world is not spinning, 8 hours where I can function, see, get around, and just be “normal”. Even nightmares are more desirable than actually being awake where even sitting here and trying to write I feel dizzy. If I sit down and don’t move an inch I can watch a TV show or a movie and for a few seconds at a time forget that I am stuck in this constantly moving world. A world where I can no longer walk in a steady line. A world where I am constantly almost falling and a world where I can’t see anything around me unless I stop and don’t move for around 30 seconds to let everything slow down a bit. Even slowly turning my head left or right is enough to set off the spinning. It is miserable. am miserable. I don’t want to think about it but how can I live a productive life like this? I try to stay optimistic but because I chose to not remain “ignorant” in the mechanics of this disease my optimism is slowly burning out like a flame under the water of pessimism. My optimism is drowning in a sea of pessimism and I really don’t like who I am right now. Equally frustrating is my inability to truly describe what this is like. I can say “I feel dizzy” or “the world looks like it is moving” but that really does it no justice. I lack the vocabulary to express what this actually looks like. It frustrates me! Like I am stuck in my head trying to tell someone something but I am unable to move my lips. I feel… helpless? Makes me wish I could just be put in a chemically induced coma for 6 months while my brain heals and I just dream that everything is OK. But after all, maybe it healing, , like how our hair is growing only so slowly that we really can’t tell on a day-to-day basis? Maybe I just have to be patient and things improve with time? What else can I do? I can only wait and hope. It’s just getting so difficult. I am not sure what to do with this lack of hope and motivation. Again, this is a new trial I have never been through; . Even in the past, while I was in physical rehab, I at least showed progress, which fueled my hope. I could the changes almost daily but not now and it’s driving me crazy. It’s making me desperate. What drugs have I not tried? Baclofen? Maybe diet will help? Stress reduction? All things I am not sure how to properly accomplish. I tried making Salmon for lunch yesterday to increase my Omega-3 intake – green tea (which I hate) for it’s antioxidant properties. I even wonder about drugs such as Anti-Lingo-1
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Tysabri IVIG Acthar Personal Trainer

I saw my neurologist today who confirmed that I have oscillopsia with a slight horizontal Nystagmus; it is very settle though. He saw it with his ophthalmoscope (I think that is what it is called) so that to me illustrates how subtle it is. Anyways, as I presumed, nothing I can do but wait. He said I have obviously improved since last time so I should not worry. They got me on the phone with the Acthar people and it is being shipped to arrive Thursday. That is what I think will help the most in my visual recovery which will help everything else like a domino effect so I am eager for that. My neurologist also got me on the phone with a personal trainer he likes. Not a physical therapist, a personal trainer. He feels I am past what physical therapy can do for me and have to start pushing it further which I am all for. So I see him tomorrow for an evaluation. He does house calls so that is good since I can not drive right now haha…

While I received my 26th  infusion of Tysabri I talked to the IVIG people on the phone. Looks like I will have a nurse here on Friday to infuse my IVIG over an action packed 6 hours! Hey this is good. Personal trainer tomorrow, Acthar on Thursday and IVIG on Friday. You can’t really attack MS any more aggressively than that haha!
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