Friday, May 15, 2015
I am a pretty patient guy… I don’t mind waiting; waiting is a skill I have thoroughly exercised in the last 5 years. Relapses, doctor appointments, flights, bus trips, trains, social security visits and so much more. So many hours I have spent just staring at the floor, a wall or the ceiling. I have learned to keep myself company but for some reason I am loosing my patience lately. I just want my vision back!
I went to see my optometrist yesterday expecting my prescription to have changed but to my surprise it is exactly the same! There is not even the slightest amount of swelling along my optic nerves! So every ounce of visual impairment I am experiencing is the result of Nystagmus/Oscillopsia. How ironic! I can’t see anything to the point that I am falling over yet I basically have 20/20 vision! I can’t see but there is nothing wrong with my eyes or optic nerves, it’s all in the brain. Think of it like this; the eyes see the world and send a signal over the optic nerves to the brain describing what they are seeing. Right now there is nothing wrong with my eyes or optic nerves, just the part of my brain that interprets the incoming signal. It’s frustrating when things look blurry and you naturally want to rub your eyes but then you realize you are not even TOUCHING the part of your body that is making things look so horrible; making you dizzy and even throw up! Stupid cerebellum… I am going to order the disk with my latest MRI results the next time I go in so I can posts pictures of the culprit.
So oh yeah, I was hoping that part of this impairment was the result of plain blurriness because then I could get new glasses and maybe see a small improvement. Even a 5% improvement would have been nice! Nope. Nothing I can do. I was even hoping that contacts would help. I thought that if I had Nystagmus (my eyes shaking left and right) that maybe if the lens (contact) moved with my eyes it would look different than when my eye is moving across a stationary lens. My optometrist was not sure but was interested to see if that would turn out to be true. I hate contacts; I suck at putting them on thanks to my shaky hands. Still I struggled to get them on to see if they would help. Nope! No difference…
So Solu-Medrol, Solu-Cortef, Acthar injections and IVIG have not helped at all. I am actually stopping the IVIG because all it does is make me dizzy which is pretty much what I was hoping it would fix. So I have exhausted every form of treatment I can really try… except letting bees sting me but yeah… So it looks like I am just waiting on time. It’s odd to sit and wonder if I will ever see again; if I will ever drive again? I try to not think of it but it’s hard not to. All I do every day is count down the hours till I can go to sleep for the night. I close my eyes and suddenly there is no crazy vision, just black. I drift off into a dream and hey! I can see! Which makes it that much harder to get up in the morning; back to a spinning world where I can hardly take care of myself and sometimes feel so dizzy I am nauseated to the point of throwing up. Eye pain. Headaches. I hate this.
I have done a lot of contemplating and I wonder how it would feel to loose each of my other senses instead of vision. Would it be easier o be deaf? No taste? I guess easier is not the right word, so I mean I wonder if it would be preferable TO ME. Loosing my hearing would be emotionally hard but at least I would be able to function (I imagine). UGH anyways, no point in speculating, it is what it is and crying about it won’t change a damn thing.
C’est la vie!
All I know is I am so tired… Tired as in tired of this uphill battle. But I need to force myself up. I am still breathing so I can’t really let myself just give up. So I am basically signing myself up for various “obligations” to get me “out”.
Nothing worth fighting for is easy right?
Monday, May 11, 2015
I am going to ask my neurologist about plasmapheresis. "Plasmapheresis is a process in which the liquid in the blood, or plasma, is separated from the cells. In sick people, plasma can contain antibodies that attack the immune system. A machine removes the affected plasma and replaces it with good plasma, or a plasma substitute."That is the only thing I can think of that I have not tried yet... At this point I really have no faith in any treatment improving my health... I think it is entirely up to me and life style changes. I do want to see a neuro-ophthalmologist and an optomotrist. Even if they can improve my vision by 1% I will be "happy". I am continuing to try to strengthen my body so maybe I will see some improvement in balance or at least an increase in my energy levels.
Friday, May 8, 2015
So the other day I had a bit of an episode. I took it easy for a few days and felt back to “regular I can’t see and I am dizzy”. That episode made me snap. I was so angry at my situation! Something has to change because I can’t live a life like this!
So I have been getting up at 5:00am to work out. Exercise. I am slowly trying to change my diet. Lots of little things to at least make me feel better because I figure I will heal faster if I am generally healthy and in shape. Stress reduction is a huge one that I need to work on. So since I am back with my parents I am sleeping/living in the loft. The loft has a balcony and it overlooks the downstairs rooms. I put up Styrofoam insulation to help keep it cool. Then we put up really thick black out drapes over the Styrofoam wall and between the two it help cut down the noise while I am trying to sleep so that cuts some of my stress but there are still other stressors in my life I need to learn to deal with (properly) so I am slowly working on that on top of diet and exercise.
On the 5th I had my 27th infusion of Tysabri which was my 4th infusion since I stopped my Tysabri in Colorado resulting in this rebound. Right now I am having my 3rd IVIG infusion and I will be starting Ampyra soon so hopefully between all of this stuff I will start improving sooner than later. This has been going on since January; it feels like it has been for ever and I am starting to forget what life was like when I could actually see straight, get around, do stuff on my own, and drive. Just trying to be patient but I have a feeling this will go on for the rest of the year since I we are almost halfway through and not much changed on my end; I have mostly been learning how to adapt and live with this.
Today I woke up feeling a tad more dizzy than usual. My vision just a little worse. I am so fatigued but then again I have felt like this for a few days despite taking Ritalin and a cup of coffee in the morning. By about 2pm I am struggling to keep my eyes open. It’s only 10am and I can’t stop yawning! I hate this, not sure what I want to do just yet… Ugh…
It's annoying because when I don't feel fatigued I FEEL like I can physically do so much but thanks to this vision I just can't. Makes me feel like the actual me is trapped in this stupid body, like a cage.
Wednesday, April 29, 2015
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.
Thursday, April 23, 2015
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 usually 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 some 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 that 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. I 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 is healing, slowly, like how our hair is constantly growing only so slowly that we really can’t tell on a day-to-day basis? Maybe I really do just have to be patient and things will 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; hopelessness. Even in the past, while I was in physical rehab, I at least showed progress, which fueled my hope. I could see 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 new drugs such as Anti-Lingo-1 which is not even FDA approved yet but if I can’t remyelinate that one single lesion on my own maybe I will have to switch to a new medication?
I don’t know, I just want this to be gone. I am no longer waking up and hoping that I will be able to see. It’s like I have accepted this as my new reality. But I can’t live like this. I can survive but I want to actually live. Life was already difficult and now I can’t drive or do anything that I feel I have the energy to do that will help pass the time.
I feel so negative and that is partially why I have not been blogging that much. I just don’t want to think about MS.
Monday, April 13, 2015
I am loosing my grip on “positivity”. I am so tired of this visual crap, it’s exhausting; both physically and emotionally. Mostly emotionally. I just want to see a world that is steady so I can do the mundane things I feel like I can physically do like clean and cook or drive myself to the store!
It seemed like it was getting better but now it has taken me a few steps backwards. From what I have heard online, IVIG (Intravenous Immunoglobulin) can cause many symptoms such as dizziness. My first infusion for this new round of IVIG made me dizzy during the infusion but quickly subsided after I was finished so I thought nothing of it. This second round was different. It made me dizzy during the infusion like last time (so I again thought nothing of it) but this time it lasted all day and night! That was Friday and Saturday was even worse. So I tried to look into it but reading was so difficult as everything was sort of blurred together. Imagine spinning in a swivel chair really fast for at least 30 seconds, abruptly stopping and trying to read the fine print of a dictionary. I did not learn much but I did see a few articles saying the effects of dizziness can last 24-48 hours after an infusion. Did I confirm this? No, so I am not sure how reliable that information is.
Sunday; just as dizzy. So I decided that rather than trying to stay on track of a schedule like I have been for the last couple of months to just let it go. I felt so tired! But in one last attempt to “reboot” I took some Ritalin and went to lunch with my parents. I could hardly keep my eyes open, it was miserable! As soon as I got home I went to bed. What a waste of Ritalin…
Anyways, the great thing about sleep is the world does not seem to spin when my eyes are closed. If I dream it’s like I do not even have MS, well, most of the time. A few hours later I woke up still feeling dizzy. After working on a few things and eating dinner I took some Restoril and went to bed. My favorite time of the day now. That was a lot of rest! Surely that would help me some! Nope, Today is Monday, 68 hours after my IVIG infusion and my dizziness remains the same! Part of me wonders if my Oscillopsia and Nystagmus have got better but the improvement is masked by this dizziness? I try to not think of it because it only drives me more and more insane!
Yesterday I worked on my taxes and the financial mess that is my non-MS life. H&R Block wanted hundreds of dollars to do my taxes since I had a few forms to fill. I left and this set in motion an immense feeling of depression. All I have been trying to do is set my life straight and do everything right but it just seems to dig me deeper and deeper into a hole! I was pretty much going to have to pay more on taxes and filing the paperwork than I actually made! So what is the point of trying? Well that is what I was thinking. Luckily my Uncle in Colorado (who is the Vice President of a major Credit Union) was able to help me out; for example, the one form that H&R Block wanted over $100 to complete just needed my name an social security number on it! What a rip off! So my Uncle and my Dad helped me print out all the forms I needed and fill it out… for FREE. Long story short I should owe nothing and even get a small return to help with some of my delinquent bills. So that made me feel a little better.
I still was buried in feelings of regret; why did I play it safe and come back to California to be tested by a doctor (who I trust my life with) for to see if I was developing PML (Progressive Multifocal Leukoencephalopathy) when I could have just risked it, stayed in Colorado and never initiated this Tysabri Rebound effect (Immune Reconstitution)? I would still be in a state I loved, great weather, friends, a job, and best of all, I could actually see! Oh yeah, because no one likes living with the lingering question “am I dying”. I miss being able to see straight so much! You don’t know what you have till you loose it and now I realize that I have been taking something as simple as decent vision for granted.
So yes, on one hand I can look at this situation as regrettable but on the other hand, it is teaching me something I would have otherwise not been able to learn. I try to regret nothing in life. Something positive will always arise from something negative. That is what I want to believe at least. “The wisest of men were the greatest of fools”; you learn the most from mistakes and boy have I made my fair share! I’m just tired. I just want a brake. What am I doing wrong? It feels like the harder I try to “get it right” the harder life kicks me in the ass. All I try to do is be a source of “good” in the world all the while people who are a source of “bad” seem to get off so easy and be so happy. I know life is not fair but come on!
I just want to work, pay my taxes, pay my bills, save a little, and not be constantly bombarded by phone calls from credit card companies and collection agencies. Am I really asking for too much? I want to feel like I am working to get ahead and not just to keep my head above water because I’ll tell you; sometime it gets really tempting to just give up and let myself sink. But for whatever reason, I keep on trying to rise above.