Ads 468x60px

About Me

My Photo
My name is Matt and I am 22 years old living with Multiple Sclerosis in SoCal. Most people fins me via my blog at http://www.mattsms.com and I work to connect people with MS from all over the world of different ages, genders, and walks of life.

Saturday, June 16, 2012

Time For Another Brake

Photobucket

OK, I am obviously not doing to well mentally. This is for a million reasons but really, what it boils down to, is I need a brake. My life is 95% MS saturated. I have talked about it before but I need to stop talking and start DOING. I don't know how or what I will do I just know that yes, I want to and will stay dedicated to MS but I need ME TIME, a time and place I can go to in order to try to "escape" and "forget" about MS because it is running wild in my head, driving me nuts, and destroying my health. I need some time away from the blog, Facebook, the group, everything so that I can just think and really figure out what the hell I need to do with my life, to GIVE myself a life. How I am existing right now is no way to live and I am not doing anything to move forward. Something. lots of things, need to change. I never wanted MS to become my identity and look at me, it has, and I need to fix that, I need to be Matt again. So, I'll return shortly.
read more

Friday, June 15, 2012

You Know What I Realized?

Photobucket

What is really hard about life with MS for me is simply dealing with LIFE and all the problems that come with it ON TOP of MS because MS does not care that life get's rough. So often, what makes me brake down is mot the pain, not that I have a hard time walking, using my hands, thinking, seeing, no, it's the things I would have to deal with whether or not I had MS or ANY disease for that matter.

I might take the next few days off maybe.
read more

Wednesday, June 13, 2012

I just... I don't know...

Photobucket

I don’t usually post more than once in a day but I guess I just have a lot on my mind. I was going to try to get by just posting about my symptoms today but I realize now that THAT is not going to suffice. You want to really know how I am doing? Well, let's put it this way, sometimes symptoms are the least of my worries. Sometimes neuropathic pain is lost among the shadows of my other pains in life.

So, I was feeling a bit of cabin fever coming over me as I have been stuck in my bedroom for far too long. I like to get out, sometimes I would just drive around listening to music, snapping pictures, and thinking, but now I can not do that. Every time I think I am moving closer to getting that back I take a step backwards. That is depressing in and of itself. Anyways, I just came down to the new house with my mom who is doing some painting, I just needed a change of scenery, I needed to get out.

This is the first time in a long time I have been in a “normal setting”... I am not sure how to explain it... This house has no memories of my past or my suffering. It's a blank slate and today I feel somewhat... Out of place. Like a red spot on a white wall. In my room at home, in the hospital, my only contrast is my past and other people with medical issues, white on white, but here I can see myself for what I am. It's depressing, I want to feel normal again, but I don't think that will ever be. What is normal anyways? I forget.

I think a fresh start, a clean slate, it's going to be good for me, health aside, but, I feel so all alone. I am not looking for a pity party, just venting. I have to start all over which again, is good, but I can't help but look back at all I had before, all that I have lost. My job, my truck, my ability to drive, my ability to go to school, my friends, my hobbies, love... Everything I worked for is gone. I know how this works, I am not seeking advice, this will pass, but it has got me down right now.

There is so much to be optimistic about in actuality but today is just one of those days you know? I can only hope tomorrow will be better but I have way too much time to sit around and think. I wish I could read, perhaps it's time to acquire some audio books... I need to let my mind escape because it is dwelling on way to much negative and that is making life so much more difficult... The days used to go by so quickly but now time is ticking ever so slowly, I just want this week to pass already but each day feels like two.

This could be blamed on the pain of my MS causing me to ponder about every waking second of my life but I think the real issue here is that I no longer have a real life to escape to. MS has consumed me. I don't know how to find balance anymore because of course all I can think about is getting better, hard to not think about it all when you can not even function each day! From the moment I wake up till the moment my eyes roll into the back of my head, I feel like I have MS, I feel it. I can't forget it, not even for just one damn second.

An itch that never goes away.

So today I am depressed and tomorrow I hope to not be. We can't be invincible all of the time, we all need to just vent about life every once in a while even if we know the answers to our problems. That's all I am doing, venting... What else can I do when I can no longer shed a single tear for myself? I wish I could but I just can't...

I hope that my life is about to change because I am just tired of this, exhausted. I want to walk again without this stupid cane, Running would be nice but I at least want to not need a cane. I hate this cane. I want the world to stop spinning and I want my vision back so I can drive. If I could just have that back I would be happy, is that asking too much? I don't care about anything else, the numbness, the pins and needles, the pain, I can put up with it, I can hide it, just give me those couple of things back.

I don't want MS to rule 90 percent of my life, I want it to be nothing more than background noise. I just want to feel happy again. I want to feel a sense of purpose, success, success outside of the world of Multiple Sclerosis. I want to feel like I have a normal life for just a little while. I am 22 years old and I want to feel it.
read more

What a Crappy Day, MS sucks as Well, Vertigo.

Photobucket

Today just started off bad. Apparently 8.5 hours of sleep is too much because I have learned that if I get too much sleep my symptoms flare up and today that is just what they did. This morning I woke up to pins and needles in both my arms from the elbows down to my fingertips. It feels so horrible! I hate waking up to this! Kept waking up all night as well so today I just woke up feeling like garbage.

Took a cold shower to try to reduce some inflammation. Who knows if that does anything but at this point what do I have to loose? The pins and needles / numbness do not seem as bad right now but I have had sharp shooting pains in my legs all day, they just shoot through my nerves at random and it feels like someone is poking my toes with a needle when ever I stop thinking about it. Makes me jump... Fun. Stress sucks, stress sucks a lot more with Multiple Sclerosis.

I have tried to stay as active as possible to avoid becoming super tired again so I have been packing and moving stuff around getting ready for the move. Still feel tired. Got a bit done though. I can't do 5% of what I used to do during a move so that is rather frustrating. I hate just sitting here!

Worst thing is the vertigo. Man it is so bad today! It is even messing with me when I am sitting still! I barely move my head and everything starts moving. I finally looked up vestibular exercises on Youtube that I could try to do at home and than I remembered that I have a sheet the physical therapists gave me for home exercises to try to improve my vertigo. Found that and then tried some of the exercises out but they made me really dizzy so we will give it a week and see if any of it get's easier...

I just can not live like this, I can barely make it to the bathroom right now without falling because the entire house is just moving too much! The spinning makes everything from walking to typing difficult, forget making meals! I don't know what to do, I just want this gone... At least my vision is not so doubled anymore... UGH... I do have a bit of a headache from all the spinning which sucks and oh, Dramamine does not do anything by the way, not for me at least.

Man, oh man, oh man...
read more

Tuesday, June 12, 2012

About Me - Medication

Photobucket

Since everyone tends to ask what kind of medication I am currently on I though I would post a section going over it. Now this may need to be updated often as I am always changing things up but more than likely I will explain that all to you if you message me or post a comment because I am not sure how often I will be able to update.

Anyways as you can see I am building up my own personal pharmacy here (lol) and this is after I got rid of a bunch of medication... What you can't see in the picture are all the needles I no longer take... As much as I hate it, medication is part of my life. Prescription pills, pain killers, supplements, and needles. I have more pills on hand than most senior citizens I would imagine. I don't take that all at once but I do take a lot... Although compared to others with MS it's probably not that much because I am trying to cut out everything I can but still, for a 22 year old? Too much.

So let us go over my current cocktail,
I am not going to list the amounts because that changes way to often:

LAST UPDATED 10-28-12

Citalopram - 40mg/Day
Nuvgil - 150mg

Baclofen - 30mg-40mg a Day
Temazepam - 30mg (As Needed)
Oxybutynin - 5mg (As Needed)


Acthar (For Flares) [No More Steroids]


Vitamin A - 8,000 IU
Vitamin B12 - 1mg
Vitamin C - 1,000mg
Vitamin D3 - 5,000 IU
Vitamin  E - 400 IU
Fish Oil (Omega 3) - 2,400mg
Magnesium - 1,200 mg (400 3x a Day)
Zinc - 45mg (15mg 3x a Day)
Lecithin - 1,200mg (400mg 3x a Day)
Calcium -1,200mg (600mg 2xa Day)
      
read more

Monday, June 11, 2012

Vision Getting Better and Starting Rebif

Photobucket

FIRST OF ALL! I am still pretty blind BUT today it is way better so I have to be happy for that. Hopefully tomorrow will be even better! Trying to take in all the anti-inflammatory stuff I can and have even been taking cold showers to lower my core temperature. Maybe that is stupid but I have heard of others doing that and it has to be better than a hot shower right? Haha...

Trying absolutely everything I can to get some sight back...
I even increased my B-12 to 2,000 IU...
“A B-12 deficiency can impact vision by damaging the optic nerve 
that relays signals from the retina to the brain”
http://www.livestrong.com/article/447034-vitamin-b12-deficiency-in-the-optic-nerve/#ixzz1xV8YHDLh
I don't know if I believe this will make a difference but B-12 is water soluble so can't do too much harm. Definitely do not feel any energy difference, in fact, I took a long nap today so, yeah, I think energy is not going to come from B-12 for me although I still have to try liquid B-12 as someone recommended.

ANYways, had my first Rebif (interferon beta-1a) Injection today. Nurse came over to do “training” and after being on Copaxone for so long it was all pretty easy. A subcutaneous shot pretty much is a subcutaneous shot it seems, just had some stuff to learn about the drug itself. I am tapering up to full dose so hopefully I don't get the flu like symptoms, funny, after all I have been through I am worried about flu like symptoms lol...

So cool, no more daily shots, just 3 times a week now so hopefully I remain symptom free (as far as the medication goes) and hopefully it helps me baseline. Going to skip my arms as well since I do not have much fat there and you do not adjust the needle depth between sites but since I am going from 7 a week to 3 a week it looks like it will be no big deal.

Remember to talk about all this with your nurse, just sharing my personal experience!

I am really hoping that after we move I will cut enough stress out of my life that my body will be able to baseline because it has been treating me... not... so well... this year... I will give myself like a week to rest after the move and then I will try to get a better routine going, exercise, sleep, diet, medication, etc. So we will see if all this change helps my health! I am tired of feeling sick and sick of feeling tired!

Wish me luck!

Photobucket
read more

Sunday, June 10, 2012

You Shoot Me Down, But I Won't Fall, I am Titanium

Photobucket

read more

Saturday, June 9, 2012

Double Vision, Vertigo, Walking, Multiple Sclerosis Sucks! (VIDEO)

Photobucket

read more

Friday, June 8, 2012

ANYways, Rebif is Here and I Got SSI

Photobucket

Well, just going to be quick.

Rebif is here, had a nice break from the needles but time to start poking again... I just hope I don't get the flu-like symptoms... Could care less about the needles, just don't want the flu-like symptoms... Training person is supposed to call but it has been well over 2-3 days... What the heck! Oh well, I don't know if I mentioned this but I am moving on the 22 so I don't want to start my Rebif till after I move so I am done with all the stress plus if I DO get flu-like symptoms that will make moving so much more difficult... New house will be nice, so much bigger, it's going to eliminate so much of my stress!

Other good news is I got SSI so that will help a lot! Even with the small amount of money I am getting it is so much more than NOTHING so a lot of options will open up now that I have some income to play with... Just going to save, save, save and get some treatment going because I just want this to be a stepping stone in my life.

Symptoms:
Well the hug is killing me right now and it came with some burning. Pain is not so bad but dizziness is kicking my butt... I can't see strait and walking is so hard. Been trying to sit all day. Nothing else is any different but those two symptoms are pretty bad today. Lame.
read more

Wednesday, June 6, 2012

I am So Tired of All This

Stress.

Stress is a part of life I know, but, for an MS patient...
Things are different. People do not get that.
Stress = Pain, Stress = Debilitation.
I am tired of it. I can fight through it most the time but the current has finally taken over,
robbed me of all my strength.

My hands hurt so bad, my leg hurts and is growing stiff.  It burns.
The pain is everywhere actually, it comes an goes, and I almost don't notice it anymore.
My wrist, my shoulder, my forearm, my chest, my stomach, my side, everything.

I am so dizzy.
T h e  w o r l d  j u s t  w o n ' t  s t o p  s p i n n i n g.

Yeah, I LOOK fine but if you only knew what I was feeling...
I try to hide it most the time but I can't do it right now.

The current is drowning me.

I hate this disease more than my words could ever portray.
I am tired of hurting physically and emotionally.
The emotional pain is the worst.
People do not get it and I am tired of it.
Tired of feeling like a burden or like no one believes me.
No one realizes what I am going through.


I feel defeated. What am I fighting for?

Up and 
            down, up and 
                                  down. 
Happy-sad, happy-mad.
I can't handle the emotional roller coaster anymore.

I just want it to be over,
I want to be alone
and hear nothing.
I want to be done with pain inside and out.
I want to feel nothing because this hurts.
I am not Superman.


Give me my life back!
read more

Monday, June 4, 2012

MS Update - Pain, Spasticity, Numbness, and Vision Loss

Photobucket

Well in case you have not noticed I am trying my best not to do any kind of blog work on the weekends.I am trying to use that time for myself because like I mentioned in a previous post, I need to work on being Matt instead of always being “Matt that guy with MS”.

Anyways, let me do some recapping. On Saturday, I was in a lot of pain throughout the entire day. Sharp pains in my arms and legs, you know, that good ol' neurological pain. On top of that I had lots of burning sensations in my upper right chest, the right side of my ribs, and my right shoulder, very weird. Some of this pain has stuck around for the last few days but it has not been so bad, same with the burning, thanks to my high pain tolerance this is just annoying to me.

I have obviously, for those who follow my blog, been trying to avoid using painkillers. I slipped on Saturday though, the pain was just stressing me out, I needed to escape. I was overwhelmed and my pain tolerance just gave up so I took three "extra strength" Norcos. Usually they give you 5/325 mg a pill in the hospital and you can have one every four hours. I took three and they were 10/325 mg each which means one pill is like two Norcos at the hospital. I took three of these which means I basically took six Norco's all at once and I didn't even feel it. I waited an hour for it to kick in and nothing, didn't even take the edge off my pain, didn't make me tired, and didn't make me loopy. I think I have officially built up a tolerance to pain killers.

Almost forgot, I slept all day Saturday, partially because of the pain and partially because I was just tired. I would sleep for an hour or two, wake up for half an hour, and then fall back asleep. This went on all day and I was more miserable over being this tired than I was about the pain which I guess is a good thing because it kept my mind off of it but this was kind of like the whole “break one finger to keep your mind off of the pain of your other broken finger”solution so I was not happy with it.

Photobucket

But over the course of the last few days my pain has settled down a bit, still have some in my arms but it's just annoying at this point. I also figured out just how numb my hands are. I decided to try cooking for the first time this year, nothing crazy, just a turkey burger! Yum! I was making some french fries as well and it was time to pull them out of the oven… I told myself that I was not going to burn myself this time, I was extra careful with everything I did, I slipped on the oven mitt, and pulled out the pan... Something felt wrong… 3 seconds later it dawned on me, what I was feeling was myself being burned somehow. I dropped the pan back onto the rack and looked at the oven mitt. There was a hole in it between my pointer finger and thumb which means I pretty much grabbed a pan that had been heated to 400°F with my bare hand, well at least between my pointer finger and thumb. It bubbled up a little bit but I could not feel it even if I rubbed it, scratched it, or slapped it, just could not feel it. Now there's just a pink spot so luckily it didn't turn into anything too crazy. I better be careful now!

What else… Oh yeah, I have been so dizzy the last couple of days! It's making walking so hard and every time I turn my head the world starts spinning round and round so I just want to sit here and not move, well sometimes, but then the real me wants to get up and do something but it's so hard when everything is spinning like this! It's like trying to run up the hallway of a boat that's going through a storm, everything feels like it's moving, rocking, I hate it!

Photobucket

On top of that my vision has not been so well for the last couple of days, luckily it's only when I am looking at things up close, everything else is just regular blurry, the same kind of blurry I have been dealing with for the last couple of years. But it was getting really hard to read text messages so I got a new app that lets me make the font way bigger… Made me feel kind of old but whatever, it is really nice to be able to read what I am receiving and sending! With my glasses, things are not as bad most of time, but sometimes things get so blurry or doubled that even with my glasses I can't see small things… When I can see however, I've been trying to start reading! I need to get my brain working again! I am going to try to finish Montel William's book today, I am very close to the end! As simple a read as it is it has been very difficult because I haven't been reading much this year, but I will try to change that because I have enough books on my bookshelf to keep me busy for a while.

Quick note before I forget, I have not been wearing a mouth guard in my sleep for a few weeks now, I don't seem to be grinding anymore! So I really can't wait to get into the dentist to fix my stupid teeth! I hate them so much, embarrassing!

Last night I experienced some spasticity for the first time since the hospital, my first hospital stay that is! I was stressed out and my legs just started stiffening up… Luckily I still had a couple of Baclofen left over so I took 20 mg last night and today everything seems to be just fine. I better call in a refill because I think I have one or two left and if this issue is still going to pop up I need something to fight it because it gets really bad for me when it does…

Photobucket

Well today things are not so bad, my vision is not too bad, my pain is not too bad, the numbness is the same, but the vertigo is still pretty bad which makes my walking a little unstable. I was able to cook today without any accidents and I even messed around with the dishes a bit. I just rinsed them off and stacked them to the side so that somebody could finish them off really quick. I can't risk breaking all the dishes so I have to be careful although my mom did pick up some tempered glass dishes which pretty much just don't break and they are super light weight so they are awesome! All MS patients should have this!

Photobucket

I also tried replacing a broken doorknob today, this should have usually taken me just 3 minutes to do but it took me forever because my fine motor skills are not what they used to be, depending on the task… I got the doorknob on but I can't see well enough to cut the door jam in order to insert the new plate of metal thingy that allows the door to shut. Wow, I cannot remember what it is called, I just know it was very frustrating because I used to be a do-it-yourself kind of guy and now I can't even replace the doorknob without some trouble, arg!

Well either way, I'm doing much better than I was when I first got out of the hospital and when I got out of the hospital the second time! Still have not received my Rebif, what the heck! Just trying to get back on track, trying to readjust my workout routine, and then I am going to try to get into physical therapy as soon as I can so that hopefully, in the next few months, I will be where I want to be, especially if I end up getting disability… My attorney told me that they already made a decision and I should find out in the next two weeks, that was Friday I believe, I have an interview with disability on the seventh, fingers crossed! I don't want to be on disability but I am trying to suck up my pride and do what I have to do to get back ahead in life, or least to catch up I should say!
read more

Friday, June 1, 2012

Progress Update - Walking, Vision, Piano, and Fatigue

Photobucket

read more