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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.

Thursday, December 30, 2010

2010: Another Year Past

PhotobucketAbout 4 or 5 months ago I was stuck in a wheel chair, I needed a walker just to get around my own house because I could barely stand on my own. The right side of my body was numb and the left side was going paralyzed. I had no sense of balance, I lost the fine motor control of my left hand, I lost my sense of taste, I went blind in half of each eye, I battled restless Leg Syndrome and fatigue along with many other small symptoms that may have not been serious but proved to definitely have been a huge nuisance.



PhotobucketAfter much struggle and change I finally reached a state of remission which lasted about a month allowing me to go on hikes, drive a car, taste my food, even ride a motorcycle! Now I am currently fighting off a second exacerbation but luckily it is nowhere near as bad as my first. My walking is a little funny, my vision is not the best (though I have learned to compensate for it), my left hand is experiencing some slight loss of fine motor control again along with pins and needles and some occasional loss of strength which also appears in my right forearm but for the most part, I still feel like a normal human being, well, maybe one that just woke up 2 minutes ago, I don't know, something like that, I can't complain... Though I may not feel satisfied I do feel somewhat content. I know I could live a happy life with this condition.

So though I have already gone through much change, 2011 for me will be about refining that change and setting up my life. I would be lying if I said MS isn't going to be an obstacle throughout my life, as much as my stubbornness and pride would like to say that I know I can't. What's important thought is the fact that MY MS is just that, an obstacle, that's all it is, an obstacle and any obstacle can be overcome. So again, 2011 for me will be about refining and reinforcing the changes I have made and bringing even more changes into the picture! Conquering that obstacle!

I also feel that I must mention how Multiple Sclerosis has opened my eyes even though it has ironically blinded them at times when speaking literally. I have always been one to put the well being of others before my own and MS has shown me how unhealthy that can be, it has taught me that it's ok to want to take care of myself first, something I once would have thought to have been nothing short of greedy. There is a balance that you must find and I am finding it more and more everyday as I now have a more clear vision of what friendship and companionship should be.

These tough times have shown me the true nature of the people I have surrounded myself with in life and now that I know how to take care of myself first I can better gauge who is healthy for me and who is simply harming me. Some may say I am a jerk and that I have grown cold but that's simply because of the contrast in my behavior they are witnessing. Of course I am going to seem cold if all my life I have given 120% to my friends and 80% to myself and now all of a sudden I am giving 100% to my friends and 120% to myself. Bottom line, wether I am right or wrong the blunt and honest truth is that I have to do what I have to do to stay healthy. If your willing to give me 120% as a friend you can expect to get 125% back, but if your only going to give me 80% then don't expect anymore then that in return because I can't afford to give any more when there are so many other people out there who could use my 100% or my 120%.

Speaking of other people out there, I want to take this opportunity to say thank you to all my MS friends I have met online through my blog, Facebook, and other various websites. I think it is important as a community of people with a common denominator to stick together and help support one another because though we all may have close friends and family who are there for us, sometimes they just can't understand our pain the way someone else with our same problem can. You have all definitely helped me along my journey with MS and I am thankful to have met you all everyday, I only wish we didn't all live so far apart! Just know as I have mentioned before that I am always here to listen, give advice, or give comfort, it's the least I can do!

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That said I am also realizing that though I may not know exactly what I want to do with my life I do know this: I want to make a difference. I want to help people, I want my actions to ripple throughout life like water rippling after a stone has been cast into a lake, ripples that might only slightly effect the debris floating around the surface of the water. The way I see it is, even if I barely effect someones life, or slightly change their outlook on a situation or open their mind just a little then I have succeeded in my endeavors. Of course I would love to make as big as a difference as possible but any victory is a victory:



PhotobucketAn older man and his grandson are walking along the beach. The previous night there was a huge storm and hundreds of starfish were washed upon the shore and were now dying. As they walked and talked, the Grandfather began to stop and pick up starfish throwing them back into the water. After about 20 minutes of this the grandson, wondering why his grandfather was doing this, asks,
“Grandpa, why do you keep bending down with your bad back and picking up starfish to throw them back into the water? There are hundreds of them, how do you think that what your doing actually matters?”
The grandfather bends down and picks up another one, he says to the little boy,
“You see this one?”
“Yes,” the grandson replies.
“Well it matters to THIS ONE!” the Grandfather says as he throws the starfish back into the water.
The little boy thinks for a second and begins following suit.

You see, though I know I can't change the world, I know that if I can change just ONE person's life I will have done something useful for the world because like the ripples of water in a lake, that one person may go on to do something they otherwise may have never done if it wasn't for my actions. So one of my biggest goals of 2011 is to start helping people, start volunteering my time, making use of my skills and knowledge to help others, to do my part in making the world a better place to live. Next time you are prompted to take action towards a cause and you hesitate, remember, you may feel that you are just one person and that you can't possibly make that huge of a difference, but that one “starfish” will care more then you would ever know.

Keep an eye on my blog in the coming months for I have much planned! I wish everyone a happy, healthy, new years! Thanks for Reading!

---- NEW----
Listen to this article as a Podcast! 

I know that a lot of people with MS have vision problems for starting 2011 I will try to create podcasts of all my postings! It's a little rough for ow but hopefully the quality will improve over time.




Symptom Status for 2011

So it looks like I will be starting 2011 with a few symptoms since this last exaserbation has yet to cease. I am mostly dealing with the following:

Pins & Needles in left hand
Minor loss of fine motor controll in left hand
Ocasional Pins & Needles in right hand
Ocasional weakness in right forearm
Lhermitte's Sign ( Pins & Needles in arms and legs when I tilt my head down)
Minor balance issues
Occasional Muscle tremors in left leg (Calf)
Occasional Blurred Vision (When stressed)
Cognative Impairment
Memory Impairment
Occasional Mood Swings (Most likely a result of Prednisone)

My Current Medications

A lot of people ask me what medications I am on so here is a list of what I am taking going into 2011. I kind of want to get off the Cellcept and I should be done with the Prenisone soon.

Copaxone (20mg)
Fluoxetine (20mg)
Prednisone (Tapering Off of 45mg, 5mg a week)
Cellcept (500mg increasing to 1,000mg)
Clonazepam (0.5mg nightly)
k-Tab (10MEO)

HAPPY NEW YEARS! 
------ 2011 ------
A YEAR FOR CHANGE!
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Wednesday, December 29, 2010

2010 Progress

Below is an archive of my progress entries with multiple sclerosis. I will try to keep it as organized as possible so that those of you who simply want to see how I'm doing can just check in here. Thanks!


Matt Allen G: Introduction to my Multiple Sclerosis - Wednesday, September 8, 2010

Exacerbation Progress 8-24-2010 to 9-7-2010: Audio Journal Translation - Friday, September 10, 2010

First Exacerbation Progress Journal: Wednesday, September 8 and September 10 of 2010 - Friday, September 10, 2010

First Exacerbation Progress: Fine Motor Control Improving! September 11, 2010 - Saturday, September 11, 2010

Progress Update: The Needles are Coming! - Monday, September 13, 2010

First Exacerbation Progress Update: Stupid Heat! -
Tuesday, September 14, 2010

First Exacerbation Progress Update: A Step Backwards... -
Thursday, September 16, 2010

Exacerbation Progress Update: The Effects of Emotional Stress on Physical Health - Sunday, September 19, 2010

Quick Exacerbation Progress Update: Not Too Good... - Monday, September 20, 2010

Exacerbation Progress Update: Just Complaining... - Tuesday, September 21, 2010

Progress Update: A friendship cannot exist in the absents of selflessness... - Wednesday, September 22, 2010

Progress Update: It's a Brand-New Day - Thursday, September 23, 2010

Progress Update: Matt's Air Conditioning Enhancement Unit-3000 (MACEU-3000) - Friday, September 24, 2010

Progress Update: Lifestyle Changes - Monday, September 27, 2010

Progress Update: Doing Better Today - Tuesday, September 28, 2010

Progress Update: MILESTONE 1: Remission or Not, Here I come! - Thursday, September 30, 2010

Progress Update: Fine Motor Control and Taste - Monday, October 4, 2010

Progress Update: Not Much New Here Yet, - Wednesday, October 6, 2010

Progress Update: Getting Better! - Tuesday, October 12, 2010

Progress Update: Milestone II - Saturday, October 16, 2010

Progress Update: Matt's Home Peripheral Vision Test

Progress Update: REMISSION 2010!!!! - Friday, October 22, 2010

Progress Update: The Picture Says it All - Wednesday, November 17, 2010

Progress Update: What it's Like Living With MS Part 2 - Thursday, November 18, 2010

Progress Update: A New Symptom... - Friday, November 19, 2010

Progress Update: Pins N Needles - Sunday, November 21, 2010

Progress Update: Possibly Exacerbation 2 - Monday, November 22, 2010

Progress Update: Back on Solu-Medrol - Wednesday, December 1, 2010

Progress Update: Done With IV Drip! (Solu-Medrol Steroids) - Friday, December 3, 2010

Progress Update: 1 Week After IV Drip - Saturday, December 11, 2010

Progress Update: Mycophenolate Mofetil - Friday, December 17, 2010

An Emotional Cold Front - Sunday, December 26, 2010

2010 December Holidays! - Sunday, December 26, 2010

2010: Another Year Past - Thursday, December 30, 2010
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Sunday, December 26, 2010

2010 December Holidays!

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What a great Christmas I had yesterday! In fact, might have been the most enjoyable Christmas I've ever had! I didn't spend Christmas Eve stuck in traffic, rushing around, stressing out, etc. Instead, I got to spend Christmas Eve relaxing with my family and enjoying a nice Christmas Eave dinner! To me, that's how Christmas should be! Enjoyable!

Christmas Day was especially fun, got to spend the day with my family and my friend Rodney relaxing, enjoying good food, and having a good laugh. This day will definitely not escape my memory! I truly look forward to starting some new Christmas traditions, so we will see how the years to come play out, but honestly, I'm not even going to think about that right now because I'm just happy that the stress of the holidays of 2010 is finally over! Though I enjoyed my Christmas the weeks leading up to it were definitely stressful and have definitely been affecting my symptoms... I'm really hoping that now that everything will start calming down in life that my symptoms will calm down as well. I have a lot of new goals set for 2011 so I am eager to get everything started!

I hope everyone enjoyed their holidays and I wish you all a happy new year!

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An Emotional Cold Front

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Multiple sclerosis has greatly affected my life in the last five months or so, it has helped me change in so many ways but recently I've realized that I need to make something clear. For anyone out there who believes that my MS has caused me to grow calloused and cold, you are wrong. The only thing that has caused me to grow cold is people. People have made me cold, people have formed my calloused emotional state, and people have made me who I am today. MS simply opened my eyes to allow me to see the world more clearly.

I am done trying to please everyone for everyone can not be pleased. I am done being used and I am done stressing out over the emotional well-being of others when they obviously have no regard for mine. I know who my true friends are and I will keep them close because when it comes to dealing with MS, one must surround himself with positive people. So call me a jerk, I don't care, but I am realizing now who those people are and who I need to separate from my life. Like I said, I am only this cold because of how I have been treated, I have no choice but to do what's best for me and my health. I don't like that I have to be this way but I also don't like being miserable and after all I've been through and after all the people I've tried to help I think I deserve to not feel like crap everyday.

I can be a really good friend but at this point I am done handing that friendship out to people who can not return it. There are plenty of other people in the world who want that kind of friendship, who need that kind of friendship, and I will save what I have to offer for them. Again, call me a jerk, but I frankly just do not care anymore, I can't care anymore, I just don't have the energy.
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Wednesday, December 22, 2010

I Need to Set a Plan

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2011 is right around the corner and it's just about that time of the year that everyone is setting their New Years Resolutions. Sometimes I think this is a silly tradition because if change needs to happen then it needs to happen regardless of the date and time. But I understand that most people look at this as a marking point for a "fresh start" so I'll play along.

Come New Years Eave it will have been 5 months since my MS journey began. The beginning was rough and a lot was going on at a pretty quick pace, but I got through it and now things are slowing down. My MS is acting up just enough to be an obstacle in life but not enough that my life has to stop like it did during my first exacerbation. I am noticing this to cause me much frustration because I want to move ahead in life, ahead towards what I would call "success" but the only thing stopping me right now is ME, not MS, ME.

So I need to set a plan, I need to get my life organized, I need to set clear goals for both the short term and long term because I am sick as hell of where I am right now, I need change. I need to get healthy again, I need to stay healthy, maintain my diet and exercise, I need to get a career going, get some income, get a new car, move out, I need control of my life. I need not live at the mercy of time and welfare, I need to have my own options, I need control of my direction, and to do that, I must set my direction, set my goals, and make it happen. I know I have the ability and means to do so, the opportunity is there, the only thing stopping me, is ME.

2011 needs to be a new year, it needs to be a new beginning. 2010 was but a milestone on the way.
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Monday, December 20, 2010

MS Stops My Time

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I mentioned somewhere on this blog either in a recent posting or a comment (can't remember) that I felt like time has stopped for me because of MS and that I felt like I have to watch time for everyone else move on without me. My illness is a purgatory preventing me from progressing in life, preventing me from moving forward, moving closer to sucess.

Wrong.

I realize now that thought MS may be a huge obstacle in my life it is still merely an obstacle and all obstacles can be worked around, some are harder then others, but nonetheless, they can all be worked around and so I simply have to work a little harder for my goals in life. All I need is a positive attitude! Well, that and a pharmacy full of medication, but either way, positive attitude, it's important!

So I guess all I am saying is, my stubbornness has made a new goal, I will be successful in life, I will make this next year a successful one, I will not let time waste away around me, I will move forward!
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Friday, December 17, 2010

Progress Update: Mycophenolate Mofetil

PhotobucketSo far I don't feel any better, my hand is not as bad as it was but I seamed to have reached a stalemate here... I might actually say I am noticing more symptoms lately, probably as a result of stress... My balance is not so hot and my peripheral vision has been going in and out. This is greatly frustrating me. I am also breaking out on my neck and chest really bad and am also noticing a decrease in my cognitive sharpness and memory... Equally frustrating...

I saw my neurologist yesterday and she slowed down my Prednisone taper and prescribed me Mycophenolate Mofetil, an Immunosuppressant which she said can take up to 6 months to kick in. Kind of bitter that I have added yet another medication to my remedy but if it works it works I suppose. I just know the bills are getting pricey...

My Neurologist also extended my disability... I am both happy an disappointed. I don't want to be on disability for ever, I want to get my life going! Being on disability makes me feel like I am stuck in limbo, like time is still moving on but leaving me behind... But I guess at the same time, I need money, and since I can't really get a job I need to be on disability... I am so broke and that's part of why I am so stressed lately, bills, Christmas, etc... So overall I guess this is good news but I'm just very pessimistic lately I suppose. Ill post again soon!
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Monday, December 13, 2010

Emotions and Mental Well-being

PhotobucketI wanted to take some time today to write about how multiple sclerosis has affected my emotions and mental well-being since I was diagnosed and how I have dealt with them. It's been a little over four months now since my symptoms began and all the stress of the situation has definitely taken its toll on my mental and emotional stability over the course of this time. I'm going to use the clich phrase that it has been “an emotional roller coaster” because quite frankly that is the best way to describe it, though, not all roller coasters are the same ride...

In life everyone handles different situations differently: some of us get sad, some of us get angry, some of us bury everything deep inside, and some of us can't keep our mouths shut about our issues. I'm a very self-aware individual when it comes to my emotions and mental state of mind, I find psychology fascinating and like to use what little knowledge I have about psychology to observe people's behaviors and try to predict how they will deal with certain situations. When it comes to psychology one however cannot be one's own psychologist and so, though I am self-aware enough to recognize when I am not myself I can not always give myself the advice I need to hear. Everyone needs a third person perspective or someone to talk to when dealing with problems.

I have not gone in to see a psychiatrist yet, not that I'm opposed to it, I just simply haven't started any sessions up. So far I have tried to deal with all my emotional ups and downs on my own and by talking to a select few of my close friends whom I trust greatly for advice. In retrospect I can see that there were several incidents that I may have handled in an unhealthy manner but what's important is the fact that I can acknowledge that and learn from it, at least that's my opinion.

So what exactly have I gone through emotionally and mentally? Well, I have always had problems with depression so naturally when I was first diagnosed I was having some issues there but honestly not that bad because I've learned to control and maintain my depression, in fact, there have been plenty of times in the past where I have become an emotional wreck over stupid little things so considering I handled my diagnosis as well as I did, I have to admit, I'm surprised with myself. My depressive state did not last very long, the main issue I have been dealing with is irritability which could in fact be a result of all the steroids I've been on but I'm not sure.

The thing about emotions is that sometimes, if not always, it's really hard to distinguish where certain emotions or thoughts are coming from. Life for a human being inevitably comes with stress and so life for someone with multiple sclerosis comes with that predestined stress with an additional load on top of that and both forms of stress pretty much blend together. My point is that one day I might just be feeling really, really, irritable and for that day in particular there's a good chance I can blame that irritability on my steroids, on my frustration with my symptoms, or on something that simply pissed me off earlier in the day but there is really no way to know what caused that irritability for sure. I can only assume that it all slowly builds my stress levels until I finally crack and lose it.

Now I want to talk about a recent period of time where I knew I was handling my emotional issues incorrectly but did not know what to do properly. I recently went through a short stage of depression and severe irritability after my last IV treatment. I had no idea how to manage those emotions and so my mind went into self-defense mode. I buried my emotions inside and began to withdraw from everyone not just emotionally but literally. I didn't want to talk to anyone, I didn't want to see anyone, I didn't want anything but to be alone and I knew that it was unhealthy, I knew that that was not the proper way to handle my situation, but I didn't know what to do differently so I didn't do anything different... It was a miserable week but finally I was able to slowly get a hold of myself but only because I slowly forced myself to talk to people so I could get some different perspectives. Hopefully what I learned on my own will be enough to prevent this from happening again in the future but I can't be sure, I just know that I am still open to the idea of seeing a psychiatrist not because I think they have the answer to all my problems (because they don't) but because I'm simply interested in getting some feedback from a third person perspective, specifically from someone who is not a friend and most likely has no bias to guide what they have to say.

So my only advice to anyone out there dealing with some tough emotions is to talk to somebody, someone who preferably can give you an honest, non-bias, third person perspective on your situation. If you don't get a third person perspective than the only thoughts and emotions you have to deal with are the ones that are already in your head and that's not going to get you anywhere new, you have to add some different ingredients to get some different results. If you keep all your motions buried deep down inside they are only going to build up and add stress making your situation worse, keeping your emotions buried inside is pointless anyways, the always make their way out eventually so talk to someone!
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Multiple sclerosis, My Definition?

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I was watching the latest episode of “House” the other day (which ironically was about some rare form of MS) where I heard a quote that I am quite fond of:

“Without our beliefs, what do we have to define ourselves?”

This has got me thinking a lot because it is so true, our beliefs are one of the biggest things that define us as individuals because they typically influence the next biggest thing that defines us, our actions.

So this led me to think about my beliefs and how they define me which inevitably lead myself to the question of “Does my MS define me?”. I'm happy to announce that I reached the conclusion that NO, multiple sclerosis has not defined me but it has in fact help me define myself. Having MS has opened my eyes to the world allowing me to see it in a way that I never saw it before and likewise, it has helped me open my eyes to myself, allowing me to see myself more clearly than I could before. MS has helped me learn a lot about myself and it has also helped me reinforce my beliefs essentially helping me better define myself as an individual.

But MS DOES NOT DEFINE ME, there is a fine line between these two ideas, I know, but believe me, that line is there and I am definitely on the right side.
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Saturday, December 11, 2010

Progress Update: 1 Week After IV Drip

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Well it's been a little over a week since I finished my Solu-Medrol (Steroids) IV treatments so I just thought I would give a quick update on my progress.

So far the only significant change I've seen is the disappearance of the pins and needles sensation in my legs. Today however I can definitely say my left hand does not feel as stiff as it first did, I still am experiencing the pins and needles, but the numbness does not seem as bad. A few days ago I picked up a guitar and I could not feel the strings, could not get my fingers placed properly, but today I can kind of feel the strings and I can make my fingers position over a cord, it's not easy, and I can't do it well enough to play, but it's enough for me to see that there has been some progress. Another quick note, I can still feel some light pins and needles in my right hand when I make a fist but otherwise it's fine.

Aside from the pins and needles and loss of fine motor control in my hand, the only other problem I am really noticing is my balance which has been slightly off but it's not that bad, it's just not as good as it should be. My peripheral vision has been a little funky to, I can see everything crystal clear when I look straight at it but my peripheral vision is kind of fuzzy again but this time around it's not affecting me the same because I've already trained myself to constantly scan my surroundings to compensate for the loss of peripheral vision so I'm not too worried there.

Okay, not really anything else to report on, back to the waiting game! I'll update soon!
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Friday, December 3, 2010

Progress Update: Done With IV Drip! (Solu-Medrol Steroids)

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I'm finally done with my steroid treatments for now! I'm so happy to be done, as I said before, I am getting way too familiar with this hospital... I'm really hoping that this minor flareup subsides soon, hopefully within a week or two I will have my fine motor control back in my left hand. I have noticed that it seems like the pins and needles sensation is pretty much gone in my legs but I can still feel it a little bit in the fingertips of my right hand and in my left hand but overall it seems that the steroids have at least taken the edge off this flareup so I'm not too worried about it turning into a full-blown exacerbation anymore.

I Also wanted to make a quick note more for myself and my record-keeping, these last three days of treatment seemed to have resulted in some slightly blurred vision probably because we adjusted my IV drip to a one-hour session rather than a two-hour session, so basically, I got the same amount medication in a shorter amount of time. The blurred vision seems to only last a few hours, not that bad, just enough to notice and just enough to be worthy of writing a quick note down about it.

I'll keep everyone posted on my progress, thanks for your support!

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Wednesday, December 1, 2010

Progress Update: Back on Solu-Medrol

PhotobucketSo on Monday I started my IV steroid treatment again, also known as Solu-Medrol, to help beat my latest flareup. Once again I am doing two hour sessions a day for five days, it's been very boring because this time I am doing it alone... The first day I played Tetris on my computer until my computer died and yesterday I listened to music on my mom's MP3 player and tried to sleep the whole time which passed time a lot quicker than playing Tetris I have to say LOL. today I will either listen to music again or watch a DVD on my moms laptop since my laptop does not currently play DVDs.

PhotobucketI have a really good feeling about this treatment this time around because last time my whole body was falling apart whereas this time it's pretty much just my left hand that is being affected along with the sensation of pins and needles from the waist down, so I'm thinking that the steroids will take affect much quicker since his flareup is not as bad as my first exacerbation. I don't want to say anything too soon but it does in fact seem like my hand is doing a little bit better today already which would be quite impressive! Fingers crossed!

I really need to get on top of my diet and start working out more once this flair up goes away, I'm finally realizing just how sensitive my body is with this disease so I can't let my guard down ever! All I know is I'm getting way too familiar with this hospital, hopefully I can stay out of it long enough to forget my way around LOL! Again, figures crossed!
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