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About Me

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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, April 28, 2012

Grinding and Clenching my Teeth

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Oh did I tell you? I have been grinding and clenching my teeth in my sleep! Yay!!! I would post a picture of the damage but for once, of all the things, I am embarrassed. Lol I think I have always been somewhat self conscious about certain things and my teeth must be one of them. I have broke 3 teeth so far..... Insurance won't pay to have them fixed because there is no decay.

So let me get this strait... Since I have taken care of my teeth and saved you (the insurance company) money you are going to leave me hanging. BUT IF, I had unhealthy teeth that you (the insurance company) had to pay for every few months THEN you (the insurance company) would help me? That is like giving the guy who has been in the most car accidents and who speeds left an right an insurance break while the safe driver who has never crashed in his life gets charged more... It makes... No sense...

So after three failed attempts at getting some help from this dentist failed, the dentist was at least kind enough to grind the sharp edges of my teeth off. Yay... Well I suppose it is good, I am just fed up. This is what I get for trying to do things right in America.

So I have been using a sports guard at night to try to prevent further damage but man... I just want them fixed... Like I said, I guess I am self conscious about my teeth so it is hard to ignore the damage done... I'll post before and after pictures once they are repaired.
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Friday, April 27, 2012

Just Having a Hard Time BUT I am OK

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OK, it's been hard lately for me to be on top of my blog so  I apologize. I feel like I am swimming against a violent current that only grows stronger with each futile stroke. I will come out of this poor state of being, this hopeless mentality, in time... Life is new, everything is new, I have to re-learn everything but the colors of this new life are all a hue I have never seen... Describing it would be like trying to explain how a sound tastes, it can't be done, only the one who experiences this phenomena can know what it is to feel it. As in reality itself, what is green to me may be blue to you.

Depression has been swallowing me whole and though the "strength in my legs" is (yes is not are)  slowly dying and I have found myself dropped upon one knee to maintain ,y ability to stand up I am still doing just that; standing up. This is hard. This is extremely hard, but I didn't come this far to loose, I will win. I have to. So give me time to figure this all out and I will of course come back a million times stronger.

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Wednesday, April 25, 2012

New Shirts Are In! MS IS BS!

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Well the new shirts are in for those of you who pre-ordered. I only have a few left for now, not sure how I will stock up an inventory but either tonight or tomorrow Ill have the one style of shirt I do have available posted for easy paypal purchase. For those of you who already bought one I will try to ship tomorrow so if you are in the states it should be 3-5 days, if your overseas, well, maybe a week or two depending on where you are!
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I Hate Feelimg This Tired

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 Hey everyone.... I am having such a hard time right now. I am just so exhausted. I can never get enough sleep and the more sleep I get the worse I feel, makes me almost want to start back up on my coffee habits but no, no, stupid thought, I need t do more research on ways to battle fatigue when I can, it's just so hard.

I have felt depressed, and it's not situational, it's a chemical thing so that is hard to manage. Well, wait a minute, it started off like that but then my many crappy situations added to it. I can not keep it all under control like I usually can, I hate it!

As far as my physical symptoms go, well, all I will say is I am so dizzy I keep leaning into walls and counter tops. Getting around is becoming very hard because of this, even though my walking is so much better! ARG! Hands are still kind of numb but I could care less. Vision still sucks especially with the dizziness but once that goes away I'll be able to maintain myself a bit easier so fingers crossed.

Sorry my blog is falling apart but so am I and I have to take care of me first and then everything else. So I may disappear here and there. Life is not consistent, it blows... I'll try my best though but I am so dizzy and I can not see and I am a cognitive wreck. Ill talk to you all later!


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Monday, April 23, 2012

Progress - 4/20/12 (VIDEO) - Almost fell on Tape HAHA!


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Tuesday, April 17, 2012

Symptom Log - Recovery is Slowing

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Well this is frustrating, I was driving down the road to recovery and I seemed to have ran out of gas leaving be stranded... Doctor won't give me steroids because “it won't effect the overall course of the disease”... … DUH! But it sure will improve my quality of life at the moment! No plasmapheresis, and no alternative treatments because there are no studies that show alternative treatments help MS. “Take your Copaxone and where you are in 6 months is the best you are ever going to get.

“Ahahahahahahaaaa... And I thought my jokes were bad!” 
I am too young to hear that so what to do what to do... Frustrated! ARG!

Symptoms
  • Numb Hands
  • Slight numbness in right foot
  • Pins and Needles in hands
  • Lhermite's Sign in back and arms
  • Loss of fine motor skills in hands
  • Loss of coordination in hands
  • Loss of ability to tell Hot and Cold on skin
  • Some pins and needles in right foot
  • Major Fatigue
  • Weakness
  • Loss of vision
  • Major dizziness/Vertigo
  • Grinding/Clenching teeth in sleep
  • Clonus in legs
  • Possible leg spastisity again
  • Small shooting pains randomly everywhere
  • Horrible Balance
  • Horrible Cognitive Function including Memory Loss

Medication
  • Copaxone
  • Gabapentin
  • Mec;izine
  • Citalopram
  • Baclofen
  • Norco/Percocet (As Needed)
  • Clonazepam
  • B-12
  • Vitamin D
  • Vitamin C
  • Lecithin
  • Calcium
  • Fish, Flaxseed, snd Borage Oil (Omega 3,6,9)
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Sunday, April 15, 2012

Don't Look Back

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One thing I am learning about MS is that it is important to look forward and not back. There is nothing to look back on that will bring any good to one's life. To look back is to regret, to wish we had what we have lost or to wish we had taken a different path. I made a mistake. I am making a mistake as you read this and I go on writing. I have now come within the event horizon, there is no turning back, I have to ride this out now. I looked back...

I had a job, I had money, I had a truck, I had friends, a life, a girlfriend. I had hobbies, talents, a routine. I spent a lot of time at a local coffee shop where I read a book one page at a time everyday and/or every night. “Coffee Shop Girl” and I clearly had a thing for one another. I helped her rearrange the shop, we sat and talked on her brakes, sometimes she was not on a brake, it was nice. Everyone there knew me, I would walk in and they would start making my drink because they knew what I wanted. It was nice...

My job had a lot of negatives but I had a sense of responsibility. I knew what I was doing and everyone knew that I knew what I was doing, I liked that. I was put in charge of a lot, I did store resets when CVS bought us (Longs). I worked at 13 different stores, a few of which were fighting over me. I made a decent amount of money for someone my age. I always had something to talk about, I could support myself, pay my own bills...It was nice.

I started dating a coworker and around that time the store slowly fell apart as our new manager was just that, new, and he did not know what he was doing. The “power” got to his head and he treated us horribly and lied left and right. So a bunch of us quit. From that day on my life has been downhill. Why oh why did I quit?

There is so much more that I had and lost but right now this is what is sticking out for what ever reason... My dating life was falling apart and I was stuck in a world of unemployment braked only by a few seasonal gigs or under the table jobs. It was at this time that I was diagnosed with MS. I had no job, unemployment ran out, so I had no money, I was loosing some of my friends, my relationship was falling apart, it was not very nice. To add to the symbolism of my good life ending the coffee shop that I spent everyday in had just closed down and the building has remained empty ever since to serve as a reminder of my past's end.

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As my disease progressed I learned the true colors of my so called friends. I lost most of them. My girlfriend (at the time) and I were on and off for the next few years, it was horrible. I slowly lost the rest of my friends. I think I held them to too high of a standard... I miss having friends and I miss being in a relationship. I miss having money and responsibility... Disneyland... My own car... A working body...

Fighting all this alone is hard and hurtful. If I didn't have my parents and my MS friends online I would not be where I am today but it's still not the same as spending time with friends or a significant others. Sometimes I wish I could go back but that is just a symptom of regret,

I tell you, do not look back, only look forward.
"In the end everything will be OK, if it's not OK then we haven't reached the end".
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Friday, April 13, 2012

Need to Take a Brake...

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OK, maybe I rushed the blogging, I don't know.... But I am tired.... So so tired.... I need a brake to put my mind at ease and catch up on sleep. For the last few days I have been more tired than I can ever remember being. I am constantly yawning all day, I nap for hours at a time, then I wake up and... And I feel no better. I do not know what to do...

It is so hard to function. If I could get back to the level of fatigue I had before this last relapse I would not know what to do with all the energy! I hope this eases up a bit because I have no idea how to function like this, most my day I am trying to keep myself from falling back asleep and grinding my teeth away in my sleep...

That's right, I have broken 3 teeth so far.... I am so frustrated. UGH!
I think I will write something on Monday, have a good weekend everyone!

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Wednesday, April 11, 2012

Progress - Walking with Cane (VIDEO)

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OK will try to write more soon but realizing it is just to hard right now with therapy Tues-Thurs, we will see if that changes soon....
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Tuesday, April 10, 2012

Exacerbation 2.0 – A New Chapter in My MS Life Begins

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Intro:

Okay well, that time is here, it is time for me to start sharing my experience in the hospital battling my second major Multiple Sclerosis exacerbation... Now I need to make one point very clear, my memory was greatly affected by this exacerbation, mostly my short-term, but I am also having difficulty recalling a lot of what happened while I was in the hospital and rehab... So I am going to do my best to get this right but I will probably leave things out that will come up later so bare with me. I do plan on writing a book still, I think it's just about time for that as well, so a lot of the details will probably end up along those pages but no worries, I will not rob you of a good story! It will take me some time to write about everything that I want to write about (regarding this exacerbation) here on my blog because A) I am trying to remember a lot of this still and B) because I am using voice recognition software to write this instead of typing... I hate having to use this voice recognition software because it makes so many mistakes but I really don't have a choice right now, I can't wait forever and ever for my hands to return to normal because, well, that may never happen....

The Trigger

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So let's start from the beginning, an exacerbation has to have a beginning right? Wrong. You see I quickly learned that when it comes to issues regarding health, especially with MS, you can't always pin everything to an exact date. We as people want everything to have a beginning and an end, it makes the events in our lives easier to understand, to to hold onto, to maintain control over, but we cannot be in control of everything, to follow, not as much as we would like to be at least. So what I can tell you is that sometime around the very beginning of February I started experiencing a flareup of symptoms.
  • Could not feel heat very well on skin
  • EXTREMELY sensitive to cold touching skin - it burns.
  • Tender skin on back of neck/head, very painful, hurt inside ear as well
  • Occasional ringing in the left ear
  • Balance (bumping into walls)
  • Clumsy
  • Occasional spasms in fingers (mostly mornings)
  • Pain in fingers and top of hands
  • Pain in forearms and elbows
  • Cognitive fog was the same
  • Vertigo when I moved my head too quickly
  • Drunk sensation
  • Lhermite's Sign (Felt it in my lower right ribs)
  • Minor depression (Situational)
  • Horrible Restless Leg Syndrome
  • Waking up with headaches
  • Vision was a tad fuzzy
  • Blind spot had been up and down in severity
I am pretty sure that I tried to play the denial card at first and act like I was just having a few bad days. My family was planning on going to the zoo and they asked me if I wanted to come. I knew I probably should have stayed home but I wanted to go and I was playing the denial card so of course I went. I don't remember much but I do remember being very tired and having to use a cane to get around the zoo. In retrospect I do not regret going because honestly I do not feel like this was the trigger of my exacerbation, it was going to happen either way, it was coming, so at least I had some fun before I had to go. Although, I'm still rather disappointed that I did not get to see any monkeys!

Other than that I am not sure what could have triggered this previous exacerbation, in fact, I am not sure what could have even triggered that flare up of symptoms before my actual exacerbation... It was not hot outside and I was not feeling stressed in the least bit. School was coming up but I was excited for that and hardly thinking of it in terms of work... I did not exert myself nor did I eat a bunch of junk food or stay out late. Really I have no idea what could have honestly triggered my flare up of symptoms or this last exacerbation, it was just on a schedule of its own, it was all going to happen either way, or so it felt...

Over the next day or so my walking grew weaker, my balance fell apart, my symptoms flared up stronger, my pain levels increased, and I started experiencing some bladder retention issues which prompted me to visit the ER. Did not need anything backing up into my kidneys and killing me you know? At this point I still didn't think much of what I was experiencing... “It will pass” “It's nothing” but once again I was wrong... The fact that I had to borrow a hospital wheelchair at the ER to replace my cane should have gave that away but maybe the poker face I had assigned to my deck of denial cards was just too good to even be caught by myself. Maybe it was because it all was happening so fast? Who knows...
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Sunday, April 8, 2012

Progress - Trying to Get My Vitamin D

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 I know there are supplements, I was taken them for the longest time since vitamin D is supposedly really good for MS patients(Depending on what research you follow). I had also read somewhere that it was also good to get a specific amount of some my everyday but I had a hard time finding that information. Yesterday I found it however,

"Sunlight - 15 minutes daily 3-5 times a week as close to all over as practical"

So glad I found this! Most people would agree that it is best to get all your vitamins as naturally as possible whether that is from food or through the sun itself! I have been trying to sit outside every morning for about five minutes in the sun before it gets too warm. Now that I have found this bit of information I will try my best to incorporate some sun time into my day and I will be sitting for longer than five minutes, I'll do this until the heat gets to be too much since I have an extreme heat insensitivity. Right now it is surprisingly nice outside!


 Will also try to pick up some vitamin D pills ASAP, I also need to get my levels checked next time I go to the doctor!
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Progress - March 2012

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Saturday, April 7, 2012

Progress - Prednisone and Swank Diet

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I just wanted to leave a marker on my blog so I could keep track of when I started my steroids and my diet. I started oral steroids (from what I had left over from a while ago) on Tuesday, APRIL 3, 2012 and I was at about 80 mg working my way down towards 10 mg over the course of about 10 days... I know it's fast but I have done it before so no worries...I DO NOT RECOMMEND THIS TAPER TO ANYONE ELSE NOR SHOULD YOU ADMINISTER ANY KIND OF PRESCRIPTION MEDICATION TO YOURSELF WITHOUT SPEAKING WITH YOUR DOCTOR FIRST!


I believe I started working on my diet on August 5, 2012 but it's been such a slow transition that there is not really an official date to go off of, it is just around there. I will be working on the Swank diet which you can find information on by clicking HERE.

Oh yeah, I had my first neurology appointment outside of Kaiser on Thursday and that went okay... We'll talk about that later... I had my psych evaluation for Social Security on Friday and I'm not sure how that went...

Anyways,

So far so good!
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Progress - Walking and Fine Motor Skills (VIDEOS)

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Well, I know it has been a while so let's see where I am at with the walking. Now this is the best I can do so that does not mean I am doing this 24/7. I'll try to explain in the video.

I also know I have not done anything on my fine motor skills, messed that one up because I didn't capture the progress, arg... I was focused on my walking...




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Friday, April 6, 2012

Progress - Steroids and Clonus (VIDEOS)

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Monday, April 2, 2012

Progress - Spoke Too Soon...

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Looks like I still need the wheel chair at certain times, mostly nights and early mornings because when I get tired my balance gets screwy... Starting my Meclizine back up... Balance has been getting worse so now I need to see if it was because I cut the Meclizine out... Took first pill this morning.

Still trying to avoid use of wheel chair as much as possible. Using walker mostly and sometimes my cane in tight spots that the walker will not fit in. Today however I am worried I will fall because of my balance so I'm being extra careful... Had some close calls already...
THE KEY IS TO NOT PANIC whether you are loosing your balance or choking, keep your mind clear and calm! Easier said than done?

Hopefully dizziness goes away again, fingers crossed!
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