Waiting on Time

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?

18 thoughts on “Waiting on Time

  • May 16, 2015 at 3:54 am

    Hey Matt,i'm Jon. I was just diagnosed with MS in February, well partially. Took another 2 months of appointments and tests for them to be more sure. Ive been sitting here last few days watching your old youtube videos and decided to come check out this site. Reading your recent progress and seeing how you used to be…two totally different scary things. I cant imagine what it must be like. I just hope I dont end up too bad. It scares me seeing how other people have ended up. Everyone says "You'll be fine", "you'll get through it ok." But of course no one knows that for sure. I wont give up though. I'll keep fighting, though I guess it's easy to say that when ive only had some dizziness, numbness, and bowel problems so far. Hope you continue fighting Matt and dont give up.

    • May 16, 2015 at 8:21 pm

      Hey Jon, yeah, those Youtube Vids are SO OLD! I didn't even know what MS was compared to now haha… I WISH my MS was "as bad" as it was then haha…. But seriously, I would not worry, I have a REALLY severe case (so I am told) and it seems that most people don't experience as much weird stuff as me. We all have it bad and I am not saying I have it worse, just saying I can't seem to personally relate to other people regarding some of my symptoms. Either way, so many treatments have come out since I was diagnosed and that was only 5 years ago! So I would be optimistic,

    • May 17, 2015 at 9:32 am

      Haha yes, I didnt pay any attention to the dates at all so i was surprised when i saw how different it all seemed. Im really sorry you have such a severe case of it, no one deserves to go through it. I know I cant relate as well or probably be of much help, but if you need an extra person to talk to im usually available all day every day lol. And yea i've read through pretty much all the medications available. The side effects are what instantly catch my attention and worry me cause then all i see are the negatives haha. Thats why i instantly ruled out tecfidera for the rare fatal brain disease and fingolimod for the skin cancer. But after reading it thoroughly and seeing your videos and other ppl, i told my neurologist i wanna try copaxone, and he agreed i made a good choice. I got the autoject in mail other day, now waiting to recieve the actual medicine for it. Hopefully soon…though im definitely not a fan of needles haha.

    • May 17, 2015 at 3:44 pm

      lol you better get over your dislike of needle! I didn't like them at first and now I have all the stuff to place an IV an I am pretty sure I could do it myself haha. But yeah, the side effects, put it this way; I saw a commercial for an allergy pill yesterday and one of the possible side effects was ALLERGIC REACTION haha…. If it happens to ONE person they HAVE to list it. I RARELY have any side effects from any of the medication I have been on. I am on Tysabri now and I am JC positive so I am "more susceptible" to that PML virus you mentioned. I am still on it. You have to ask yourself "do the benefits outweigh the risks"?

    • May 17, 2015 at 11:58 pm

      Bleeeeh… I know I know. If im gonna spend the rest of my life being a pin cushion 3 times a week I better become besties with my autoject 2 lmao. Allergy pill that makes you allergic…haha yeah wow medications are crazy. Ugh I wish they could just make medication and there not be any negative effects at all. Ahhh what a dream life heh. My neurologist seems pretty good though. She let me see my brain scan, showed me the little damaged spots, answered any questions ive had or my parents.Im just glad they dont seem to be as bad as your Kaiser neurologist i saw in your video. Im not quite sure how I feel still about all this. When i first heard i had ms i was alittle…I dont know. I wasnt outwardly freaking out and on the inside i was just quietly nervous by the news. The first sign was like…3-4 years ago, i went to hospital because i was severely dizzy. They couldnt see what was wrong with me and said they saw a small CIS on brain but it was nothing to worry about. So i didnt pay it any attention, I got better after few days. And then the 2nd attack came in February this year, where my whole left side went cold and numb. My left hand and foot will sometimes get this numb and heated feeling now. I hope you remain PML free buddy. Sorry I seem to ramble on more now haha.

    • May 19, 2015 at 5:07 pm

      Lol just a few years ago Copaxone was every day, that is what I started on. Now I do an infusion but when I have a flare I do a home injection, 10 days of needles. IVIG infusions (well I am stopping), MRI contrast material (infusion), spinal taps, and probably more I just can't think of. I think it's safe to say I am long over my dislike of needles lol…. The autoject was nice but now I get medication in a vile that I have to sucks the medication out of with a syringe so the days of pre-filled are over for me, not that I care, lol. Hopefully (well probably with all the new meds) you won't have to get to that point haha.

    • May 19, 2015 at 7:41 pm

      Yeah thanks matt, i hope not too. Yikes all that work after getting a flare up? I already have enough hospital visits…this is gonna be a costly disease. I still haven't received any copaxone yet,ugh i guess i'll have to call them tomorrow find out whats up. Thought we took care of payment plan at the hospital if thats whats causing the hold up. And guess I'll retry signing up for disability, bit of a long shot but i cant seem to find a job still.

    • May 20, 2015 at 5:52 pm

      CALL CALL BUG CALL. No one cares about your health more than you, NO ONE. Be a squeaky wheel and get them to want to shut you up by sending you your meds. I hated that but it's the only way to move things along.

    • May 21, 2015 at 4:19 am

      o.O Alright haha, thank you for that tip. Called shared solutions today and yep as I imagined they hadnt sent me any yet. Want me to fill out insurance aid paperwork first then wait around to be approved. I cant afford to keep waiting for medication, I think im starting to have slight vision problems and fatigue.I didnt get out of bed till 3:30 today

    • May 21, 2015 at 10:27 pm

      Yes I totally agree, nothing much i can do now except wait for my paperwork to come. Bah I seem to be taking up too much space here in comments haha. Maybe I should just start emailing you or something.

    • June 1, 2015 at 2:47 pm

      Lol it will take me much longer to reply if you email me. I get so many emails, blog comments, multiplesclerosis.net comments, google plus, facebook, I have to compartmentalize it all to TRY to respond to it all haha

  • May 16, 2015 at 6:51 pm

    Do not agree with the above comment!!You cannot help someone else if you have bad MS symptoms and especially the eyes.Focus should be on yourself Matt and keep doing it and do not give up!!!!do not listen to the above comment

    • May 16, 2015 at 8:17 pm

      It was SPAM, they are these bots that have been going around for the last year or so and they leave negative comments to try to get a reaction. Annoying. I usually find and delete them before anyone else notices. They always show up in my inbox as AIM User 7876565876586957854645758765754 so I can't mark them as SPAM, ugh

    • May 26, 2015 at 8:45 am

      Bit delayed here fffff just saw your comment.okay spam haha so i was getting all angry for nothing here…….yep stress is bad for MS….discovered that tgis weekend too :/

    • June 1, 2015 at 2:43 pm

      Haha yeah, they are clever; just now, I was almost fooled by one. I started replying an halfway through realized it was spam. I need to see what other bloggers do about this although I can't think of how it can be stopped. ugh!

  • May 21, 2015 at 10:56 pm

    There is an interesting article about tysabri in medical pages on the internet.The title is Increasing Tysabri Dosing Interval May Cut PML Risk.The article is for people who are jcv
    positive.I think this is worth a read and a discussion with our doctors.Best Wishes Dee

  • June 1, 2015 at 2:42 pm

    I have read that study and brought it up to my neuro a long time ago; he doesn't buy it haha


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