Tuesday, December 16, 2014

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

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

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.

Friday, November 28, 2014

For the last month or so I have been noticing some very settle <----(SUBTLE, teacher caught my grammar error lol) but alarming symptoms. I have ignored them and pushed through them as long as I could but I can’t do that anymore. It is time to properly address them since I can’t do that here in Colorado where the doctors I see are… they are a bunch of clowns. When I think I am relapsing they drag their feet and then all they have to offer is Solu-Medrol. A drug that I no longer respond to and a drug that should not be taken with Tysabri because Solu-Medrol is an immunosuppressive drug. Add the fact that I am JC positive? That is just a finely wrapped invitation for PML; “come on in when ever you see fit”. I asked for Acthar and I was told “I have never seen any evidence that it helps so I don’t want to charge the insurance company so much money for something that does nothing”.

Oh so your in bed with the insurance companies huh? Quid pro quo? If you write too many prescriptions that cost them too much money you might not get that little vacation you and your wife want so bad huh? Well guess what, it works, I can vouch for that, I can also give you a stack of abstracts and paperwork proving they do while mitigating the chances of developing PML. Oh hey, did you know Acthar was what they gave MS patients before Prednisone and Solu-Medrol? Acthar is a hormone called ACTH (ACTHar, get it?) and our bodies produce this hormone to stimulate the production of cortisol, a NATURAL steroid. But when the cheap synthetic stuff came into the picture no longer did anyone want to prescribe $60,000 worth of medication when you can do a 5 day coarse of steroids at $50 a day.

These doctors run no tests, refuse to do spinal taps to run tests on my CSF (cerebral spinal fluid), and never respond to my inquiries. It’s a fight just to get them to run a CBC (complete blood count) let alone all the necessary testing to watch for the PML virus. They do the bare minimum; only what the law requires them to do. I need a doctor who knows what he is doing, who actually knows what does and doesn’t work for MS, who cares more about his patients than what some drug rep wants. I need someone who I trust with my life and is ACTIVE in my health. That is not here.

Something else I have in California that I do not have here? A sturdy support system. When I am feeling ill, too weak to help myself, or I don’t have a car, I have no one to help me here but back in California I do. In California I have a friend who no matter how bad my day may be, seeing her and just playing cards makes me forget about all that is wrong; she makes me happy. I have my cats and dogs, yes, I miss them. My parents? They have always been there for me even when I am 1,100 miles away; they do what they can. Yes it is hot but everything has a price. I am willing to pay that price to have all that back. I had to move over a thousand miles away to see what I was taking for granted. I wish I didn’t have to learn that way but I learned a lot about people, life, and above all else; myself. It was a great experience but I look forward to returning “home”. Home is where the heart is and that’s where I am heading.

If all goes according to plan I will be driving back with all my stuff in about a week. I was put on a leave of absence at work so when I am ready I can call and one of my managers is going to try to get me in a “store” over here. Transfer. If I can get my car fixed I will be back in California with a car and a job. Even now my car runs and I can drive it but I need to put a new engine in and it looks like I may have someone to help me with that as I am not sure how long this one will last. I am not 100% sure where I will be staying but until then I will be back with my parents.

As much as I love it here and as much as I will miss the weather and dread the heat in California, I am excited to return and be with the people I care about. I took so much for granted and I see that now. I just hope that certain people in my life will be able to see that in me as well. I know what I want in life now. I had to loose it to see it…

So last night was my last night at work. Now I am just getting ready for the move back and planning how and what I will do once I am back in town. My first order of business is to get back in with my neurologist ASAP. If all is well then I will call in about transferring my job. Somewhere in there I have to secure a new place to live because I can’t barge back into my parent’s house after all this time and let’s face it, I don’t really want to (no offense) but a bird that leaves the nest is not always meant to return. Just visit haha.

Now I get to spend the rest of the holiday season with the people I really want to. So yeah, I am happy. I am excited for that. I am just thinking “out loud” so over the next week hopefully I can make up for all the blogging I have not been doing.

Thursday, November 27, 2014

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