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!

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.


Sunday, August 31, 2014

Working Early is Great for My MS

I am a morning person. I have always been a morning person. In high school I was always up at 5:30 or 6 no matter how late I stayed up. I didn’t like to sleep; now I need my 8 hours, a Nuvigil, and sometimes a coffee just to get by.

Working retail has really hurt my sleep schedule; I am finding myself thinking at a million miles per hour when I lay down and try to sleep; it’s so annoying! Basic over the counter sleeping medication doesn’t really do anything now! I blame this on my inconsistent schedule. I don’t have a routine anymore so my body doesn’t know if I have to stay up till 11pm or fall asleep by 9pm…

Today I worked from 6am to 2:30pm. A lot of people might think that sucks but again, I am a morning person. I got mostly everything ready last night, woke up at 5 and left by 5:30 to get there about 10 minutes early. Now, I took my Nuvigil around 5:20 so by time I started working it was kicking in. I felt like I could get so much done! It was like I was running purely on the energy of Nuvigil and not my (very limited) “personal stash” that I usually try to work on. Because I felt like I actually had the energy I needed the day went by so fast. “Already time for my brake? My lunch? I was supposed to take my last brake 30 minutes ago?” I worked an 8-hour shift but it felt like 4; I wasn’t exhausted so it didn’t feel like time was ticking by twice as slow.

By time I got home I felt like I had as much energy as I normally do going into work and it was only 3:00pm! I had so much time to do what ever I wanted! Like write! Usually after an 8 hour shift I feel exhausted and just want to sleep but not today! Today was a great day! That’s a lot of exclamation marks!

I work at 8:30 tomorrow, not sure what time we open since it’s Labor Day but 8:30 is better than 9-4 or 2-10. The thing is, I feel like I could do any shift as long as it was consistent; same time every day on the same days instead of different times on different days. Having to take my medication at different times everyday sucks, especially the Nuvigil, it’s best to take it at the same time every day and from what I learned today, its best to take it right before work!

I can’t always do that though; I can’t take it before work at 2:00pm because I will be up all night and not get enough sleep to work at 8 the next day. I need a steady job, that way I can create a routine; wake up, take medication, work out, shower, eat, work. Hopefully by time I can move down to Colorado Springs I can find something like that…


All I know is there is no such thing as “consistency” in retail so for now I am just going to work as much as I can, save all my money, build a good reputation, and hopefully be able to find a better (more consistent) job once I move. Fingers crossed!

Thursday, August 28, 2014

My New Life – Then and Now

Looking back at my last few posts I (and probably you) can see that I have been living pretty stressed lately. It’s just been more than I am used to and I am still in the “adjusting” period since it has been about 5 years since I had an hourly job… Even if I do not feel mentally stressed I am sure it’s a lot more physical stress than I am used to which might explain my weight loss and trouble putting it back on. So I have been doing a lot of thinking over the last few days (especially because of my recent job issues) and today I was really starting to wonder if I bit off more than I can chew by moving to Colorado

NO

It started raining, the rumbling of thunder called me outside, with me I brought a pad of paper and a pen and I sat down. In literature (well mostly in movies) rain resembles change in a character’s life (or in the plot of the story) so I felt the timing of this random bit of rain was too perfect to not sit down and really contemplate my thoughts. Writing helps me organize my thoughts so I sat and listened to the rain, the thunder, the sound of cars driving across the wet asphalt; it set my mind at ease and so I began to create a list.

Where was I then and where am I now? By “then” I am referring to the relapse that sent be to physical rehab in 2012; the memories were fresh in my mind as I had just read over all my post about that experience last night for motivation. At the time I was learning how to do everything again; how to sit up, move my limbs, brush my teeth, put on my socks, get dressed, transfer from a bed to a wheelchair, push myself around in that wheelchair, lift a 1 pound (half a kg) weight, speak properly, swallow without choking, stand on my 2 legs, use a walker with assistance, and so much more. After I left the rehabilitation center I was relapsing and going to the hospital almost every month and a half. 

When I asked my neurologist (at the time) “how do I get out of this wheelchair” she told me I just needed to get used to it because it was the coarse of the disease. “However you are in 6 months is the best you will ever be”. That made me mad. I asked about Tysabri and she told me that she didn’t really follow the literature on that medication. So I said “the hell with you” and left her office to find my way on my own because I believed I could improve.

With much struggle and experimenting I finally found a great Neurologist, I started Tysabri, I started physical therapy, and wow; I went from a wheelchair, to using a walker around the house, to a cane, to a cane around the block, to a cane around town and on trips, to walking on my own, to traveling around the world and the states! I have personally met people with Multiple Sclerosis in Ireland, Slovakia, New Jersey, and Georgia.  Let me point out really quick, it took me a lot longer than 6 months to achieve all this; I continued to improve long after that mark.

Those are hardly the highlights of my progress but just enough to make my point; Look where I was in 2012 and where I am now. In 2012 one of my goals was to be able to shower on my own with the door shut and locked; now one of my goals is to have my own place in a few months. I have a job, a car, and I am no longer depending on benefits to live. Yes, I have been stressed, but when I look back at everything I had to fight my way through? It makes everything that has been stressing me out look like a joke!

So again, did I bite off more than I can chew? Not at all! It’s just taking me a lot more adjusting than I thought but I am on a great path towards achieving the independence MS stole from me! The job may feel stressful but it’s only because I have not learned to pace myself; I can’t do what I could do 5 years ago. Financial stress? Who doesn’t have that? Plus it’s finally settling down! In a few weeks I will finally be able to start saving while financially supporting myself, something I have not been able to do in years! A few weeks is nothing when you look back at how patients I have had to be over the years especially that now I am making much more progress in a lot shorter amount of time. I have a car of my own and the weather is so much better here so I am not stuck in my room.

“Hot” here is not HOT like in SoCal. 90f (32c) is a lot easier to handle than 110f (43c) plus, it doesn’t even feel like it’s that hot since there is usually cloud cover or thunder storms! Ironically, I did not get my “farmer’s tan” back until I left California! Life is more relaxing here; Instead of the sounds of cars racing around the block when I have my window open I now can hear the wind, rain, thunder, birds, etc. I can sit on the porch and watch the rain or the lightning and not worry that some passerby is going to shank (stab) me!

I am so close to my next goal in life I can almost taste it! Just a few more months and I should be financially stable and on my way to getting my own place in a city surrounded by nature and actual weather! Life will be good and then after a while, when I am ready, I will move on to the next goal (such as a career). It may feel a bit stressful now but nothing worth fighting for comes easy. This is the fighting part and it is almost over. I am glad I moved in life because water is only safe to drink if it is flowing; if it is sitting it will grow stagnant.

My life is flowing forward.





Sunday, August 24, 2014

I Have Never before Felt Discriminated Against

Never before have I felt discriminated against in my life, not for anything; race, religious beliefs, nor disability. Not until yesterday at my equal opportunity employer. When I was first interviewed at this retail location (that I have always loved and was excited to work at) I disclosed my Multiple Sclerosis limitations right off the bat. My disclosure was met with assurance that everything would be done to make sure that my limitations would be properly accommodated. I was happy.

Things were great for the first week or so; I was hired to cover the electronics department and I was told that sometimes I would have to venture into other areas of the store. I didn’t mind that; a small department working on things I was knowledgeable with, low temperatures, probably low stress, and little physical work. Just what I needed.

After a week or two though, I started noticing settle changes in the way people talked to me as well as what they expected of me. Soon I was in charge of electronics and toys; and then infants; and then seasonal; and then I was running around all the departments of the store while trying to cover electronics. There was much more physical work and I was now breaking a sweat. I started noticing my schedule saying that I was working the floor instead of electronics. It was like they noticed I was more reliable than others to get things done so they threw them in electronics and had me doing the tougher stuff. I didn’t complain because I was happy to have a job and I don’t like to say “I can’t”.

But it was becoming too much. Helping customers find products all over the store, unlocking things in electronics, running to seasonal to help a customer, answering a phone call for electronics, running to the hardware department to help another customer, answering a call for toys while trying to run back to electronics to help a customer ring a product up, searching for an item back in seasonal that a customer on the phone would like me to hold, trying to find and pull another product in the back room for a customer in electronics; all the while people are asking me to do this and that on the walkie, kids are screaming, more phone calls, products being dumped on my counter to stock, and so on! I was popping more Klonopin in a day than I usually did in half a week! So much stress and so much noise! I couldn’t hear people talking to me from 2 feet away! It all mixed together…

Yesterday was even more hectic because a huge truckload came in that we had to stock and an item everyone wanted was on sale for the last day. There was so much to be done and no one to help me. Though I answered everyone’s calls on the walkie no one answered mine. Over and over I asked for back up in electronics so I could take my brake and no one responded to my calls so, I didn’t get a brake. Still I pushed on.

A customer wanted a movie that we had one of in the back so I made it happen despite how difficult people made it for me. No one wanted to help me and I was not going to make that lady feel the same way; she was getting that movie. When I handed it to her, she wanted to know where a manager was so she could tell him/her how much I had helped her. I then asked that same manager a little later to help me pull a 50 inch TV from the back since I am not qualified to do that. He asked for the product number on my scanner and I said the TV would not scan. He said to me “well the number is on the sign you know?” I told him “Yes I know but I didn’t see it, maybe I missed it because when I get stressed my vision blurs”. He just looked at me like “really? Is that your excuse?” so after a moment of us standing and looking at each other, me wondering if he was going to help, I said “I’ll check again” and I walked back out. I found the tiny number and wrote it down. After I pulled the TV out to the customer (feeling like I had been treated like an idiot) the customer changed his mind about the TV he wanted twice. I needed a manager to pull the TV each time and each time I called for help I got no reply.

This same manager by the way, had previously made me feel this same way a few days prior. He was walking me down and isle trying to explain to me how to “straighten” it up for the night. I told him I knew how, I have worked retail for years, I did merchandising, and even helped convert over 13 Longs Drugstores to CVS pharmacies in southern California; I have a decent amount of experience. Still he wanted me to pull things forward on the shelves while he watched. I felt like a child. That same day a customer wanted a bike pulled down from the bike rack. I called him for assistance and told him I simply needed help lifting it down. He said “all you have to do is pull this lever and the rack lowers,” “I know I-” “-then lift it off the rack, and lift the lever to put it back up”. “Well, I know how the mechanism works but I physically can’t lift it down, it’s one of those MS limitations I was talking about?” “Oh, OK…”

Back to yesterday; later on, after my lunch and much more craziness, it was time for my brake again. I had someone to cover so I pulled out my walkie and chuckled sarcastically “-managers name- I am going on my final, well, first break, I’ll be back in 15”. “OK, just come see me when you get back”, “No problem!” When I finished my brake I found my manager (who can’t be more than 2 years older than me) and asked her what was up. She said she needed me to “loose the attitude”. “I’m sorry, did I miss something?” I asked with a smile of confusion. She claimed that when I told her I was taking my last/first brake that I said it in a rude and hostile manor. She repeated what I said in a way over the top ugly voice… it was almost comical. “Well, sarcastically? Maybe, but with attitude? Definitely not, I was just trying to keep things light”. “Well, some people may feel like that was attitude and also, your in charge of taking your breaks and lunch on time, not us, so you need to be on top of that”. No she did not just tell me that. I was trying so hard not to snap. “Well” I said, “I kind of feel like I am being treated like an idiot and like no one is taking my disability seriously because I look fine. Trust me, I may look OK but that doesn’t reflect how I feel. Also, I called several times asking for someone to cover electronics so I could take my brake and no one responded and I was swamped with customers so I had no choice but to keep working”. “Well, I didn’t hear anything”. “That’s really funny because I heard everyone else on the walkie and they all heard me when I was helping them but no one heard me when I needed electronics covered”. “I don’t know but also, if you feel your having a problem with an employee we can’t help you unless you tell us”. “I am well aware of that, and I talked to him so if it happens again I will talk to HR but I am not pointing fingers right now”. I forget how it ended but I simply walked back to my department and finished my shift.

I clocked out, called over the walkie that I was leaving for the day, and shut it off before I heard a response; I went home. I was so stressed out I felt sick and my legs were tight. I was dizzy and I couldn’t see small print very well. I got home, took a bunch of Baclofen, some more Klonopin, and knocked out without eating dinner.

Today I tried hanging out with some friends but I was feeling really sick after a bit. Both “MS sick” and upset stomach sick. When I got home I checked my email; my old bank account was overdrawn and they decided to charge me an overdraft fee early and twice for what ever reason. I tried calling but I forgot; it’s Sunday. I was feeling just as stressed and super sick to my stomach which of coarse is screwing with my MS.

I called work and talked to another manager. I told her how I was feeling and how if I came to work tomorrow I would be useless and it might not be safe for me to work. “I know this is short notice but I can’t really help it so what should I do?” “I’ll just mark you as a no show” “OK thanks,” – wait a no show? That doesn’t sound right? Before I could ask what that meant she just hung up on me! What the heck! So I feel like I have been busting my ass for them, doing more than I should be, more than I signed up for, and doing it all top quality instead of half ass like everyone else and this is how they treat me?

This store is so short handed because everyone is leaving and they can’t hire people fast enough to fill the spots. I feel like everyone knows that and they are abusing it because the store can’t afford to fire anyone. I am calling the actual corporate HR tomorrow and telling them I am being overworked despite the fact that I explained my limits due to MS and also how I am being talked to and treated is making me feel discriminated against. I want it on record. Then I am going to apply for another job that I know is hiring and I am also going to contact the National MS Society who’s headquarters is 30 minutes away from here and see if they have any opening I can fill.

I can’t deal with this store any more; it’s damaging my health that I have worked so hard to stabilize. I need something less hectic with people who will actually try to understand my MS or at least respect that it’s real. If I could get in with someone like the National MS Society that would be amazing because A) they obviously understand MS and what limits it can cause and B) I could go home feeling like I helped make a difference in something I am passionate about instead of going home knowing I helped someone find the right car charger for their cell phone… I feel like my knowledge, experience, and potential are being horribly wasted here. Even if I can just get a jobs at a bookstore with less noise and stress I would be happy.

 My point is, I finally feel like I have been “discriminated against” because of my MS. I am not entirely sure why I feel that way because it doesn’t fully make sense to me, but that is how I feel and I have never felt this way before. I hate it.


Wednesday, August 20, 2014

Fitting Back in To Life; The Difficulty



If you have been reading my blog you know I recently started working a job; retail, pretty much full time. It’s almost been 3 weeks since I started working and I very quickly learned a few things; I missed the responsibly of working and earning my own money, being busy helps keep my fatigue at bay, I don’t miss retail work, and lastly, people in everyday life don’t understand a chronic disease at all. I am both happy/grateful to be working and horribly depressed at the same time.

Yes. It feels great to be earning money on my own again. To not rely on a government check and be able to work for every penny; to earn an amount of money that reflects how much I work, it feels great. I missed that so much! Having it back feels great for that reason and because I was pretty much told I could not do something like this by a doctor. I love proving people (who think they know it all) wrong. I’m not in a wheelchair and I am working a rather physical job.

But here is the “but”. It’s wrecking me. There is no such thing as a consistent schedule in retail. They use you when they need you. Maybe one night you close and get out of work at 11:45pm and the next day you have to be at work by 8:00am. This used to be no problem for me before my MS days but now? I can’t handle it. I tried to do it, I hate the word can't but I have to be realistic and know/respect my limits or else I will only be walking backwards when it comes to my health.

Yesterday I felt horrible upon waking up. I had a rough night the previous night and I was feeling it. Still I went to work. I was fatigued, clumsy, I was in one of those moods where I wanted to just drop to my knees and start crying but I bottled it up and pushed through it. I ended up talking to someone who works in HR and let them know I might have bitten off more than I can chew. It was effecting my MS. I tried explaining how it was affecting me which is where it became depressing for me.

He was willing to work with me and adjust my schedule and hours but it was obvious he didn’t get what I meant by “I’m not feeling well”. I don’t blame him but I got the impression that he was thinking “you look fine and your not coughing or throwing up”. To which I try to say “I am not sick in a way that you can catch it but I don’t feel well”. That is not an easy concept for the everyday person to grasp but I felt like I was speaking a different language than him. I was not being understood. I told him that mentally I want to work al I can but physically my body can’t handle it and after more than 2 years without a relapse I was not going to risk pushing myself over the edge. I know he wanted to understand but I also know he didn’t. If it’s not a common cold than it can’t be that bad right? I wish I could have an hour to give all the employees a presentation on MS so that they understand that when I say “I can’t lift that down” they would understand why and know that I am not just being lazy. So that they would understand despite me not looking sick I am and I do have limits. I wish they all knew how far I have come in life to get to where I am so that they wouldn’t all give me a hard time for not being able to get as much done as they want me to. The store is crazy short handed and I am expected to do the work of 3 people (or more) and it’s so rough on me. I don’t complain though, I never do and never will. That’s just me.

Anyways it has made me realize I need to work on a game plan for a career. I can’t handle the running around from one side of the store to the other, dealing with 4 customers each grabbing my arm and pulling in different directions, a phone constantly ringing at my hip, a walkie on the other hip that never stops talking, angry customers, crying babies, where is this, where is that, did you get this done, stop working on this and work on that, that’s looking good but why is this not done? It’s wrecking me, I feel it everyday, I don’t feel healthy anymore. I am not living I am surviving.

I now know I would love a standard 8-4 job. CONSISTENCY. A desk job? I always thought I would hate that but now I am thinking it would be perfect for me. The MS Society’s headquarters is up in Denver (a bit over an hour away) and part of me thinks that’s a no brainer but I don’t want to work in Denver, the city, the traffic, that’s not what I want but maybe the stress of traffic would be less than the stress of retail? And I could feel like I am doing something in the world and not just cleaning the same isles over and over every night. I look at the other employees and think “they are kids getting ready to leave for college or a bigger better career or adults who have nowhere else to go.” I don’t want to end up stuck there, I want a career that has meaning. Whether that is speaking or working for an MS organization I don’t know, but MS is what I know, it’s what I am good at, so it’s what I should be doing. Not stocking shelves or checking for iPads that are on sale. I just need to figure out that transition because I have no clue.

I want to be around people who understand me instead of people who I feel may be judging me. I feel I am meant to make a difference in the world of MS and I am starting to feel like I am wasting that ability and not even touching it because I am too busy at work.

I feel out of place here. I wanted back into everyday society and I am now realizing it’s hardly for me. The knowledge and experience I have should have me working with and helping people. It can’t be applied to stocking shelves and ringing people up. It’s a waste of what I have to offer and that too is depressing me. I’m not building a legacy I’m burying it.


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