Matt's Multiple Sclerosis Story

Hi, my name is Matt and I was diagnosed with MS at the age of 20 in August of 2010. This is my story in progress!

So What is Multiple Sclerosis?

Multiple sclerosis: A chronic autoimmune disease that attacks the central nervous system which consist of the brain, optic nerves, and all the nerves in the spinal cord.

Why is My Chest Tight?

Tight chest? Feel like a car is parked on top of you? Well that might be the MS Hug...

Multiple Sclerosis Therapies

Learn about the available drug therapies (disease modifying drugs, or, DMD's) for Multiple Sclerosis.

Watch Me On Youtube!

Click here to visit my Youtube channel; I am in the process of updating it and getting it going again but for now you can see some old videos!

This is This is Why I Fight

When I showed up in a wheelchair to see my new neurologist after a 6 week stay in a physical rehab hospital and asked what I needed to do next to get back up on my feet she told me to "get used to the wheelchair, it's the coarse of the disease". Good thing I didn't listen!

Monday, October 20, 2014

My New Apartment; INDEPENDENCE

Well, here it is. I am fully moved in and it feels… unreal? As if I were staying in a hotel room and I soon will have to “go home” except I am home… I would say it feels great but again, I am still in the “unreal stage”. I have not slept as well as I did last night in a long time. A new bed, all my stuff set where it goes, no more boxes, it was nice. I love my kitchen; I will be doing lots of cooking! I plan to gain the 25-30 pounds (11-13kg) that I have lost since June in the next few months. I know that seems like a lot but I know I can do it if I do it right.

I don’t have internet right now so I am sitting at a coffee shop so that I can post this right now. Because I don’t like being logged on to an open network I am actually connected to my phone via hotspot. I get internet in my apartment/flat in 7 days; I didn’t want it at first because I need to save every penny I can but my plan of using my phone’s internet was destroyed due to a lack of reception. I then realized I can’t pay my bills or write without it (among many other things) which means no writing or researching… So with that all in need, it’s worth the $30 a month I will have to pay.

I meant to take some photos of the apartment grounds but I forgot and did not realize it until I got here and I am not turning back, so, later. For now just check out my flat and soon I will be writing again. I got my desk all set up and will have Internet in a week so I am ready to slowly get back into the “MS Game”. I start work at the new location today so we will see how that goes, hopefully not to bad so I have energy to do my REAL work.

So once more, stay tuned, I am even closer to being back and running! For now I have to call my insurance and find out why they don’t want to cover my antidepressant anymore. … Yeah…. Be back soon!





Tuesday, October 14, 2014

A New Chapter; My Own Place

Well I was trying to keep it a secret from my friend but now the cat is out of the bag so I can share this online. One of the many reasons I have been absent online is that I have been so busy; I have been working, saving, and working on getting a studio apartment in Colorado Springs where my buddy lives. I got the apartment and I transferred my job to the store located near my new place. Trying to time everything just right was not easy and kind of stressful but it has all worked out so far. I move in tomorrow (October 15).

I have been dreaming of the day that I would have my own place since I was around 16. It’s finally happening and it still has not really hit me. I don’t think it will until I take my first load of boxes down there tomorrow, crack a few open, spread some of my stuff around, and take a moment to sit in the middle of my apartment and just take it all in. The open space, the image of my things in my own kitchen, and the silence indicating that I have “the place to myself”. My roof, my rules, my independence. Independence. I have always been an independent individual and as most of you probably know, Multiple Sclerosis can take a lot of that away.

If you asked me 2 years ago if I thought (while sitting in a wheelchair) I would ever have this much independence; living in a different state, a job, a truck, and my own apartment? I would have said “yeah right”, but I do, I have it. If you broke my life (in the last 5 years or so) down onto a timeline, most the events would be evenly spread out across the line until 3 months ago. Starting 3 months ago there would be more on my timeline than the entirety of the prior 4.5 years. It’s amazing how much has happened in the last few months and how quickly it has happened.

I am grateful for what I have and what I have been able to achieve. There are so many people that are less fortunate than me and sometimes it makes me feel like I don’t deserve what I have. Instead I try to focus on “paying it forward”. That will forever be my passion in life, the goal I am striving for; helping others. I want to build up my life so I have more time and opportunity to try to help in some way shape or form.

I have bad days, I do, but I try to stop and remind myself where I have come from and how there are a thousand people who would kill to have what I do now. Then I realize that “it’s not that bad at all”.

So there are many things about having my own apartment that will make me happy and improve my “quality of life” but above all I will be most happy to have as much independence as I will. Independence; it’s what I have been striving for for so many years. I have reached this goal and now comes the next; with every accomplished goal comes only the next goal.


So soon I will be writing much more regularly again because soon I will have a desk; a writing spot and as silly as it may sound, it really does help to have a spot you can go to to write, walk away from those thoughts, clear your head, and come back to find them exactly the way you left them. I cannot wait to have a desk again. Anyways, now you know, and very soon I should be slowly rebuilding my online work. All I need is a new job that offers a steady schedule. I’ll write soon!


Thursday, October 2, 2014

Change; Lets Get Back On Tack


CHANGE

Many people hate it, even fear it; I have gone through a lot in the last few months, probably more than has happened in the last few years! Though most my change has been good, some has been bad. I refer specifically to my health; my weight has been plummeting! I couldn't figure out why but after ruling a few things out I am now thinking it has been due to Nuvigil.

You see I started losing weight at about the time I started taking Nuvigil everyday just a few months ago. Since then I have lost between 25 and 28 pounds (11-13kg). IN LESS THAN 3 MONTHS! I had to look at what had changed since then and besides work it was Nuvigil. I looked up side effects and guess what? The last one on the list of “less common side effects” was weight loss! Looking up “Nuvigil and weight loss” revealed that some people take it to try to help lose weight because Nuvigil can change the way you metabolism works! So I am stopping that. Today is the first day I am going without it so we will see how my energy is now that it’s nice and chilly out and I am always busy. HOPEFULLY, I will see my weight start to go up a bit in the next few weeks. Time will tell.

Now, blogging and my work in the world of Multiple Sclerosis. Obviously it’s been lacking, by which I mean, it’s non-existent. I have been so busy starting a new life that I have no time or energy to blog or do research! Not having a workstation/desk doesn’t help because I come home and think “ok, in order to write, I have to set everything up; fold out TV trey, chair, keyboard, mouse, etc.” and that all seems easy but when you're tired it’s difficult. Being able to get home, sit down at a desk, and just write before knocking out would be so much easier. I am working on a few ideas so hopefully that will change soon.

So let’s go over the list of how I am health-wise really quick. Losing weight, feel weak, knee pain, other joint pain, usually exhausted, generally not feeling well, and little things that randomly pop up here and there that may or may not be directly due to MS. All this I hope to start changing over the month. The weather is starting to “cool down” so that is helping; I feel great in it! I am working on a few ideas in my head for a better blogging set up so I can once again resume being “useful” to the world of MS.

So give me some time and I know it will turn around!


Saturday, September 27, 2014

Plans and Weight Loss

OK, as I just mentioned the other day, work is making my work in the MS community very difficult. I am always too tired to write, read, and respond to my many emails and messages. Today I cleared everything up so I finally feel somewhat caught up but there is still so much I want to write about and so much work on my blog that needs to be done. I have been able to do some writing for multiplesclerosis.net, which you can see HERE. I have been writing more often there than here because my blog is just overwhelming me; there is so much fixing it needs, updating, etc! I am not sure where to start. So I was thinking about it yesterday at work and I had an idea…

I think I am going to create a separate blog from Mattsms.com. Mattsms.com would be about me and my own experiences with Multiple Sclerosis and where I write about my progress in life. I am sure no one even notices the tags anymore but I would basically turn this blog into strictly “Progress Updates”. The new blog would be where I post anything about learning about MS and MS research news. Of course they would me interlocked so on this blog for example, when you go to the symptom menu, you would click one of the links and it would take you to my new blog. It just seems like it would be better organized and that way if people are looking to learn the facts rather than read about my personal journey, they could go there or vice versa.

Again I am still not sure how or what I will do, it was just an idea I had. THIS BLOG will never go away though so don’t worry!

Moving on; my weight. I have mentioned this very quickly here and there but now I really want to address it. Since I have moved to Colorado and started working I have lost between 20 and 28 pounds (10-13kg). I could not figure out why! Was something wrong with my thyroid gland? Was it an MS thing? I mean I know I have always had a crazy fast metabolism but 20-28 pounds in just a few months? HOW???

Well I decided to investigate and I think I know what is going on. First question, what has changed; the amount of walking I do. Before I got a truck I was walking all around town looking for a job and doing groceries. So that right there was a lot of calories being burned. Then I got a car and I expected my weight to go up or at least stabilize but no, it kept going down, why? Well I had started working in a retail environment, that could have something to do with it but still, THAT MUCH WEIGHT?

So what I did yesterday was pick up a pedometer to see how much walking I did at work that day. It was about 10 miles (16km)! Just in 8 hours so not even including all the lifting and random tasks like that I am burning about 2,000 calories in one 8 hour day! When I was doing almost nothing it was calculated that I should be taking in 3,000 to 3,500 calories a day to gain weight! Now I need 2,000 calories just to make up for work! So that is roughly 5,000 to 5,500 calories a day! I don’t have the time, energy, or money to eat that much! So I am really going to try to come up with a detailed plan and even pull a Hugh Jackman (when training for the part of Wolverine) and wake up at 4:00am to drink a protein shake and than go back to bed so that all that protein is just sitting there while I rest. I have heard that gaining weight that way is and isn’t a myth but have you SEEN Hugh Jackman?? I’ll do what ever I got to do. Then when I see my weight slowly going up and not down I have to start rebuilding muscle mass because A) it’s heavier than fat and B) I can feel a lack in strength. I think Costco is going to be my best friend because I am going to have to eat non-stop. Even now I am eating peanuts, which are high in calories and fat. Hopefully I can get in with a nutritionist soon to help me come up with a game plan.


A lot of people tell me “I wish I had your problem” but usually that comes from woman. I am a man. Men don’t want to be super skinny, so I feel weak and I also just don’t feel good about my appearance. Clothes no longer fit me and even on the last hole in my belt my pants still feel loose. I am very unhappy about this and I am actually self-conscious about my weight for the opposite reasons most are. So we will see what comes of all this soon enough, or so I hope.

Monday, September 22, 2014

Been Busy; Parents Visited, Went Camping, Knees Hurt


Wow, I have not been writing… AT ALL. I have just been so busy and tired I just want to sleep when I have a minute free! Even now, I am hungry, I need to eat, but I am trying to write this post while not laying down and knocking out… So… let me catch you up.

Last weekend my parents drove over from California to visit and bring me all my stuff from storage that I was holding till I was almost ready to move out. We went to Garden of the Gods and Pikes Peak. I had to work every day they were here except ONE but my shifts were pretty short so we still got to spend a good amount of time together. I enjoyed it.

Huge smile, I know lol...






The day before yesterday I went camping with some friends in southeast Colorado Springs at a place called Phantom Canyon. The next day we got up and drove to an old mining town called Victor; we ate and walked around a bit, which was nice. I like taking pictures of old things but I seriously have not used my camera in so long I was forgetting how to make it do what I wanted to do… Rusty that fast? Wow…






 Lastly, my knees have been hurting since I started working and they have been getting worse and worse! If I did not mention it already, I lost a lot of weight since I moved and started working; about 25 pounds (11kg)! I think I lost a lot of muscle mass in my legs so now my knees are taking all the force of each step instead of muscle… Today I wore a knee brace to work and it felt so good! So I am pretty sure that is what’s up; I need to get some sort of exercise routine back into play and I definitely need to gain all that weight back because this just sucks…

I bought Glucosamine today so I will start taking that at night and see if I notice a difference after a while. I also have to build my leg muscles back up specifically anything that supports the knee. I have a lot to do actually and I feel like I have no time or energy to do it all… Well, I am working on a bit of a plan right now so if it all works out, it will make life a little easier… we will see.


That’s it for now, sorry, I have to eat and go to bed so I can work in the morning! (BY THE WAY; I will respond to all you comments and emails as soon as I can!)

Sunday, September 7, 2014

Life Problems are a Matter of Perspective

Before I start I want you to try something; find something really small like a coin or a key or even your finger. Hold it out at arms length and observe the size of this object in comparison to everything else around you. Now hold this object up to you face; note how much larger it seems.

In life we often encounter problems that can cause us to stress (rightfully so) but sometimes we stress as a result of overreacting to something small that only seems large. I have found (but definitely not mastered) that the key to walking away from these situations in good health is to be able to take a step back and try to look at the big picture. Is this really a huge problem or is the problem just to close to your face for you to be able to observe the actual size of the situation?

When something unexpected happens (like my truck’s radiator springing a leak) we get caught in that very moment and immediately start to stress out which for MS is obviously not good. I was stressing out all day when this happened because I had no idea how I could afford to fix this. “Why now?” I found myself thinking. I was caught up in the moment, I was angry, the penny (problem) was too close to my face for me to see how big the problem really was.

At the end of the day I had formulated a plan and I knew it was going to work out; I was not stressed anymore. I held the problem out at arms length and saw the actual size of it. But guess what? All that stress from earlier in the day? It screwed me up the next day; I almost thought I would have to leave work! Then another problem! I drove to work just fine and parked my truck. I got to work really early (as always) and while I was standing by my car waiting for the doors to open I realized I had parked crooked. My OCD compelled me to straighten it out so I hopped back in the drivers seat, turned the key and… nothing. The starter was clicking but the engine would not turn.

I didn’t want to stress so I locked up and went to work. I texted my friend (who is a mechanic) and we went through a list of horrible possibilities. Now I was stressed again. “I have to replace my radiator and now for some reason my truck won’t start so I am going to have to have it towed home.” So I asked if I could leave an hour early to deal with this. My friend had told me of all these things I should try to see if the engine had seized and all that fun stuff; problem was I didn’t have any of the right tools to do the job. I sat in my truck, took a deep breath and tried to hold that penny at arms length again. What are my options? Pay for a tow truck with money I don’t have, camp in my truck till work the next day or get creative. Those who know me will know I chose the latter.

I am not going to get into the mechanics of things but basically a car won’t start if it’s not in drive (or neutral I believe) so what if my truck, when parked, had not stopped in a gear? I put it in drive and I pushed it forward until it stopped rolling meaning it had it a gear. I put on the brakes, turned the key and the engine started just like that. What a relief! I drove home without spending money on an unnecessary tow.

Back to the stupid radiator. I had my friend order one for me at the shop where he works at and he got it within a couple of hours. Before that I took it by a shop and asked for pricing and opinions. It would have been about $200 just to diagnose it, not even fix it! He gave me his opinion and I decided I could take care of this on my own. I got my truck home after 2 hours of pulling over every 5 minutes to let my overheating engine cool. I emptied the radiator and flushed it with water several times to get it clean-ish. I topped it off with new fluids and no more over heating! Again, I could explain why this is but that is far beside the point. So let’s keep a tally going; I just saved $200 on a diagnosis that I was able to do myself (the head gasket was fine which would have been an expensive fix in a shop).

The radiator my friend ordered cost me $100 which was wholesale; the list price was $200 and most shops would probably hike it up even more. But let’s assumed I saved $100; adding to the tally I just saved $300. My friend helped me install it last night so I didn’t have to pay for labor, which would have been at least $100 or more. Tally;  saved $400. I bought and mixed all the fluids so ultimately? By taking a step back and looking at my problem from a distance I saved at the very least $400 to $500 and it could have been much more depending on the shop and fees. Had I had to pay $500 plus instead of $100 for the part, $20 for supplies, and $20 for his dinner I agreed to pay for, I would be so stressed and have fallen so far behind. Oh yeah, he was able to tighten my accelerator cable (which I have been meaning to do but have not had time) in about 5 minutes so now my truck goes the proper speed and has the proper torque for a truck with a V6 engine. No more holding up traffic while I struggle up a hill.

So again, what is the main point to take away from this experience? When a problem in life comes up don’t be consumed by it and the stress it brings along; move it away from your face and when you take a step back you will be able to see the actual size of the situation compared to the world around you. This is not easy, like I said, I still have a hard time doing this before it’s too late, but when I do manage to do this it allows me to see the simple solution and avoid stress. For many of us with MS, we are used to bad news and we have grown to always expect the worst. This is a bad habit because staying positive greatly causes how your body will be effected to differ from how it would be affected if you are always negative.

Now things worked out so far. But I was still under a lot of stress the last few days. It affected my balance, my fatigue, my strength, and my cognitive skills. Today the dust has settled but I still don’t feel so great; I feel tight and I can’t think as clearly as usual. Luckily I only work 4 and a half hours today (never done a half shift before, weird, but I don’t care) and tomorrow is a full day but then I have Tuesday, Wednesday and Thursday off. I have my infusion on Wednesday but I am not sure what is up with having the day before and after off but I don’t care; this will be my time to distress and work on my health.

The following week my schedule goes back to normal and oh yeah, I got a raise, so all is well. I still have a few financial issues but those will resolve in one way or another. Over the last few years life may have been a struggle uphill with weights on my back but now I am over the top and coasting downhill. Things are much better in life as I roll towards my goal of getting my own place and a steady job but even when going downhill there are sure to be little bumps in the road but gravity will still do it’s thing and pull me towards my goal at the bottom of the hill.


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