Thursday, October 30, 2014

OK, it's been really hard for me to be active in my MS work with my new life and all. I need to feel like I have a fresh start here and a new template is not enough on it's own to satisfy that need. I need to reinvent this blog and since this blog is more for the READER than it is for me, I want to know what YOU would like to see from this blog.

All suggestions are welcome from content type, layout, font size, widgets, ANYTHING. If I am going to rebuild this blog from scratch I want to custom build it to best fit the needs/wants of my readers.

SO PLEASE, comment below and I will take every suggestion into consideration, THANKS!

Friday, October 24, 2014

OK, I have been absent for a long while. I have had a decent excuse but now I have had enough of it; I want to move towards what I enjoy (and feel I should be) doing in life. All I can think about is JK Rowling and her story of going “from rags to riches”. She had an idea that started on a napkin, she worked on it on the bus while on her way to work, and typed her manuscript for harry potter on an old typewriter; you know, the kind where you literally had to punch the keys? I have a laptop and a little free time so I need to get creative. I am going to try a few things out like writing up a post at home and then taking my laptop to work (where I have Wi-Fi) and posting my blog there. I have an actual locker that I can store my laptop in till I go home. I am supposed to have internet on Monday but for some reason I have to be home between 8:00am and 5:00 pm even though I said I would do a self install and the tech literally just has to switch me on at the box outside and because of that, and because I am certain I work Monday, I will probably have to reschedule for a later date.

All I know is this; I don’t feel I am meant to be helping people find a movie, a type of broom, or stocking shelves. After all I have been through, with all I have come to learn over the years, everything I have done, the people I have met, I feel I am meant to help people. I feel I am meant to impact the MS community in some way shape or form beyond a personal blog. I can definitely write a book and I am sure people would be interested in Multiple Sclerosis from the perspective of a male diagnosed at the age of 20. I like to speak, crowds don’t scare me, and they seem to enjoy listening to me so I should be sharing my insight to help shape the way medical students think about the disease and how they should treat patients with MS. To help motivate others going through hard times. I feel I have a good amount to offer to the world of MS and right now I am doing nothing to head in that direction. I feel as though all that I am in the MS community and all I have done/been through is fading away.

Now I know that I just moved. I am on my own now. I have my own place, a car, a job, bills, etc and this would keep anyone busy. I am just a bit frustrated because I don’t feel I am moving in the direction I want to but I know I am. Everything I just mentioned happened in a matter of months so of coarse it will take some time to settle into this new life and eventually I will start my career, not just a job. I must me clear though; I am grateful for my job and my ability to work. We as humans I think, always want “more”. The “more” that I want is to be able to do something I love and that is helping people, reaching people, and changing the way people might think. I want to have time to do something meaningful in the world as well as focus on my health. Closing at 11:00pm, driving 20 minutes homes and getting to bed by midnight so that I can sleep 7 hours and be at work by 8:00am without even eating dinner or breakfast is not healthy and not the life I want but it’s simply a means to an end.

So I will be patient and slowly do a little work on this career endeavor every day, even if it’s just 30 minutes of writing after work and before I go to bed. I have to. Things don’t change unless you make them change and again, I have made a lot of change in the last few months, so really? I just have a bit more to go. If I could make all that other stuff happen in a matter of months I can surely make my career goal happen!

Nothing worth fighting for comes easy as they say.

Monday, October 20, 2014

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

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


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!


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