Thursday, January 22, 2015

I am SO Fatigued!

OK, not much new to share. I talked to my neurologist’s office yesterday and they are still waiting on some authorization stuff for my Tysabri. I did ask for some refills on some medication that I am about out of. They are under my doctor’s name in Colorado so they would technically be new prescriptions. The Klonopin I am not worried about but my neurologist doesn’t like to prescribe Ritalin, which I understand, but I have tried so many other things with no luck. Ritalin really did work and obviously I did not become addicted to it.

I am just so fatigued. It’s been bad the last few weeks but today especially; I woke up not even 3 hours ago and already feel like lying down! I have been living on coffee and it’s really not doing anything anymore. I either need an espresso machine or a way to infuse it via an IV! I have Nuvigil still but the reason I have so much left over is the side effects I get were just not worth it; jumpy/jittery and a racing heart. Not to mention popping a pill is like playing Russian Roulette only instead of a possible bullet I risk a possible migraine.

I am not sure what to do, I feel so unproductive, lazy, I just don’t want to do anything because all I have to do is computer work and sitting in front of the computer does not help me wake up. It’s depressing! I need to be active but there is nothing to do out here! Even sitting here and writing this is… well… I can’t think of what I am writing mid sentence and it took so much energy to even write this tiny post. I need something to help this because if I can’t get anything but Nuvigil I am screwed for school!

Saturday, January 17, 2015

Writing Takes Discipline; What is new with Me?

The one thing I learned when I used to work on fictional writing projects is that writing really does take discipline. Once you establish a routine you have to stick to it. When you are struggling with writer's block or motivation you still have to sit there with everything ready to go even if you end up sitting there for an hour or two accomplishing nothing. Well I have lost my discipline. I have not been writing and I can give you a thousand excuses why not but really what it comes down to, is I just haven't wanted to; I have not been motivated – I lost my discipline. I need to get it back.

So let me try to let everyone know what has been going on lately; well what I can remember at least.

I am obviously back in California. I decided to stay with my parents again and I will explain why, just keep reading. I had to come back because my health was taking some weird turns and my doctors out there were dragging their feet on the matter. I needed a proactive doctor who I trusted to know what they were doing. I also had no support system; no one I could depend on and when I realized my health could be taking a horrible turn for the worst that really scared me.

Yes, I know I already mentioned all of this but just trying to recap. I got a new car. A 2010 Kia Forte and it had about 28,000 miles on it when I got it so now I have a reliable form of transportation that gets great gas mileage, especially when compared to my old truck. So this will open a lot of doors and make life way easier.

I decided to stay with my parents because I am going to go back to school. I could never do that if I was trying to work a job and stress over bills like rent. I will be going to complete the Occupational Therapy Assistant program. I am finally ready, I know what I want in life and I can't get that with a job in retail nor can I get any sort of satisfaction in life without a meaningful (to me) career.

I was kind of stressed the other day because come to find out AT&T changed our insurance on us without telling us. Now I am on a PPO instead of an HMO so I am worried as to how that will affect my medical life. A high co-pay is to be expected but what will happen with my Tysabri and prescriptions? Physical therapy? A lot of unknowns which we all hate don't we?

Still Waiting for Tysabri
My last infusion of Tysabri was at the beginning of November… They are having issues with some sort of authorization... I can feel that I am much less stable. I would say I have had 2 official relapses in the last 4 weeks or so. Last one was nothing serious, just felt dizzy for a day or two. I should be getting Acthar soon but I really just want to get my Tysabri before I make it into “rebound territory”.

Also Waiting to See Neurologist
I am also waiting to see my neurologist so I can get an MRI and spinal tap along with whatever blood work he feels I need. I also want/need some refills on some prescriptions which I will probably just call/email his office about. Almost out of Klonopin and I have been without Ritalin for almost 2 months and I have been so tired! If I am returning back to school I need something for sure!

New Blog

Yes, I have been working on a new blog that I was hoping to have launched by now but because I have been so tired it’s really hard to find the motivation to sit and write. I am trying to get back on track but… tired. Hopefully I can get a refill on my medication soon so I can feel up and running again!


Tuesday, December 16, 2014

A Roundabout Realization

I went outside to feel the cool air; it was raining today, a scarce happening for California these days. I stepped down from the porch and walked across the street to the mailbox to look up at the sky above my parent’s house. Dark, gray, just the way I like it. Then I looked down at the house, at the bench I had sat on so many times in the past when I needed to go outside and breathe or just think. It looked… different. Why? Why did it seem so “foreign” to me? I stood there and thought about it and found myself desperately searching the corners of my brain for some sort of answer, some clue, as to why this small spot I have spent almost 3 years around felt… unfamiliar?

Then it hit me; it looked close. Close as in distance, not far, it was right there. 2 years and 2 months ago to the day I was sitting in that bench looking across the street at the mailbox I was currently standing in front of. The mailbox seemed so far, the driveway felt so long, getting across seemed like a huge feat. 2 years and 2 months ago this very spot that I was now standing in was a goal. I would walk down the driveway and across the street and get the mail. I did it and at the time it felt so great. My world was confined to the walls of my home on a good day and the walls of a hospital room on a bad day. Crossing the street to the mailbox, it was like crossing a vast portion of the world, it was so far to travel, my neighborhood felt so large.

I have come a long way since then. I have actually traveled abroad and among the USA. I have moved out of state, explored many areas of nature, forests, beaches, mountains, deserts, and after all I have been through and all I have seen I eventually found my way right back here, right to the very spot I stood in 2 years and 2 months ago when I simply wanted to walk. This spot? The world? It felt so small all of a sudden. Crossing the street between where I stood and that bench no longer felt like an expedition. It was… divine. That experience that happened in just a few seconds in my mind. It was like when you spend hours trying to solve a math problem in school that just makes no sense until all of a sudden you find that one single digit that makes everything work; flow. Like finding the final piece to a puzzle you have worked on for so long.

I am far from having my life figured out, I don’t even have much of a clear direction yet, but even still, everything in the last few years, it took me all over the world, I had so many opportunities to start so many different lives, but still, I wound up in the same exact spot I was after the relapse that put me in physical rehabilitation. Why? Whether you believe that life has a sense of divinity or the universe simply tries to balance itself out like a mathematical equation you kind of have to appreciate the fact that sometimes it feels like everything happens for a reason. What is that reason? I have no idea yet but it’s there, I know it, I just can’t see it at the moment. Life always works out the way it is meant to.

Maybe this makes no sense' I am still trying to figure it out. But those are my thoughts.

Tuesday, December 9, 2014

Denial; First Relapse in FOREVER!

OK, I was in denial. It was a long drive home, 16 hours or so (but we did stop and stay at a hotel half way through), and it was a little stressful. More so because I was thinking of everything I had to do when I got to California; change of address, go to the DMV to get my new license, find a new car, buy new insurance, call everyday till an appointment opens up so I can get in to see my neurologist, switch my prescriptions to a pharmacy out here, switch all my bills to my new address, close a couple accounts back in Colorado Springs, update all my credit cards, open a new bank account, figure out if I am transferring my job out here or finding a new one, updating my SSI (benefits) information and probably more that I have not thought of yet. I got home late my first night and I did not sleep well so when I felt like crap all the next day I assumed it was due to that. The next day (yesterday) I woke up feeling better but by noon I was feeling worse than the previous day. I slept most the day and then hung out with a friend when I started thinking, “wow, I still feel horrible, what if I am relapsing?”

Today I am already not feeling so great. Same as the last few days; dizzy, poor balance, extremely weak legs (well I feel weak everywhere but mostly there), no apatite, achy, just… crappy… Even when I scan my eyes to read what I just wrote I feel dizzy… I was hoping it was just a flare since I have not had a relapse in over 2 years but this has obviously lasted more than 24 hours so officially? It’s a relapse. I was in denial but I can’t ignore it any longer, I hate being so dizzy and I hate feeling like I am going to collapse when trying to walk up the stairs. Hopefully I can get in to see my neurologist quickly or at the least, maybe he can write me a prescription for Acthar. That should work great since I have not had it in forever!

Till then I am trying to take it easy, I knew it would be a rough transition so I need to go slow. The weather alone is horrible! I went from an average high of 35 degrees Fahrenheit (1 Celsius) to 75F (23C) overnight! It feels so hot even though a year ago this would feel great! I am pretty sure this is mostly what did me in… I just need to hurry up and acclimate! UGH… I didn’t miss this… Oh well, it can always be worse, I am not complaining.

Wednesday, December 3, 2014

From CO to CA; Moving Back

So, most of you know (or have figured out) that I am moving back to California. My parents are driving out here tomorrow and will probably arrive Friday to help me move back to Cali since I no longer can fit everything I am taking with me in two suitcases. I will miss Colorado and having my own apartment but not as much as I miss my loved ones, a sense of security (knowing I have someone there for me if I need them), and not as much as having a neurologist who knows more about Multiple Sclerosis than I do (as they should). So in one sense, it sucks, I will miss the weather, I got used to sitting on the porch in jeans and a T-shirt in 30-degree weather. I will miss waking up to see everything outside covered in snow. I will miss a lot but none of it is worth giving up a few of the things I did when I left and so, I look forward to my return.

When I return in a couple days I have to call my neurology office (in California) and let them know I am back so they can try to squeeze me in for a few tests they don’t really want to do out here. I am sure I can use some Acthar as they also will not give that to me. Actually… there are a lot of treatments, procedures, and tests they refuse to do out here that we (everyone at my neurology office) know actually works. The thing is, out here? They care more about how much money they spend than they do about doing what is best for the patient (so it seems). That is not what I need when you look at how aggressive my MS is and also take into account the fact that my risk for PML is a tad higher than average. So before I return to work (that’s right, they put me on a leave of absence to take care of this before they set up a transfer for me) I have a lot of medical appointments to make. I think I am allowed to get a new pair of glasses as well (much needed)!

I look forward to being back around my best friend as I missed her a lot; more than I ever thought I could. I look forward to spending the holidays with her and my family. I look forward to seeing my cats, dogs, and even my fish again. I often feel like a fool for giving up the things I did; for not seeing what I had and how lucky of a guy I was to have them. There is a lot of stuff I miss about California (not the heat of course) so overall I am happy to return. As I am sure I have said before, this was a good experience for me. Leaving everything behind let me see what I was taking for granted and let me see what and who is important to me. I learned a lot. I intend to return with a little more “wisdom” and the necessary experience to try to start a life out in Cali. Apartments are a tad more expensive in California but I will make it work, I always do in one way or another. Regardless of how long it takes I’ll be OK because I get to spend time with people who make me happy again, make me smile and feel good when I am feeling down; “home is where the heart is” and I think it is definitely anchored in SoCal. When the heat comes back around (probably in like a week or two – just kidding – kind of) I will make it work.

            Things will be different; things have changed and they will continue to do so.