Monthly Archives: April 2015

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 multiplesclerosis.net.

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

Regret… Kind Of…

I am loosing my grip on “positivity”. I am so tired of this visual crap, it’s exhausting; both physically and emotionally. Mostly emotionally

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!