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Disease-free weekend… kinda

June 20, 2011

Well, the past few days have been a bit rough and I know a lot of it is my own fault. But, I decided that it was potentially my last weekend to be officially free of disease so I was going to do whatever the heck I wanted to. I drank, smoked as much as I wanted, drank as much caffeine as I wanted (oh right I didn’t mention that…I switched to decaf. Had no effect on my alertness at all, I just crave the taste of coffee in the morning and sitting there with my cup of coffee is my time to plan out the day), stay up as late as I could, eat whatever I wanted, all that fun stuff.

Friday night was fantastic. Walked to a friend’s house for some drinks and a movie. There were fireflies in the field near my house and I just loved that. At first it freaked me out because I mistook the bugs as a return of flashes in my vision but the colour was all wrong. Reminded me of being a little kid again because there were always a ton of fireflies where we camped (we would catch them in jars and use them as little blinking nightlights). I was up pretty late that night though so by the time I left my friends’ place I was exhausted, shaking, going numb, had cog fog, and just generally looked drunk when I walked (despite not even being tipsy from the alcohol). So, a particularly awesome friend went out of his way to walk me home. It was raining a little bit so it was nice and cold, that felt great.

Father’s day was really bad for pain. It started out in the joints in my feet and ankles and just spread up. It was that stupid funny bone type pain again. It was really weird though, the higher it went, the less pain I had in lower areas. So…say when it spread from my calves up to my lower back, my thighs didn’t hurt anymore. But, the muscles that did hurt went numb and the pain stuck around in the joints. It was really weird but really intense. Tons of burning pins and needles type pain as well. My fatigue was through the roof for most of the day as well. We had a BBQ and boy do I ever regret it. I’m officially cutting red meat out of my diet, I just can’t stomach it. I get sick everytime I eat red meat so from now on, just poultry and fish.

I did get to take a nice long drive through the country with my dad though. I think out of the four of us kids, I take after him the most personality-wise. That really lifted my spirits quite a bit. I just needed to get out of town for a little bit and not have it be to go to a doctor. He really seemed to enjoy it too (that must be where I get my love of aimlessly driving around from). We went to this little town that has a massive festival once a year. It’s such a cute, lovely little place when it’s not crawling with drunks. Turns out their fire department shares a building with the library, the first thing that popped into my head when I saw that was the book Fahrenheit 451 (I have to read that again, good book). We didn’t talk too much, just drove around, but from the bit we did talk it was mainly joking around. We talked about my appointment on Wednesday a little bit and I told him about the drugs I might end up being prescribed (the disease modifying drugs). His reaction was “oh, no you don’t need that, you’re fine.” Still in denial I guess…my older brother told me to send him a message when my appointment is done, if he’s not working we’re going to meet up with him since he lives in the same city as the MS clinic. That’ll be nice if it happens. I love that city, miss it like crazy…

What else…I’m thinking ahead a lot more lately. I’m already planning out my spring break vacation for when school rolls around. I’ve settled on going to Toronto since I’ve never been to a zoo and that’s the closest one I can think of. I want to see a polar bear in person, it’s on my bucket list. That and the CN tower would be pretty cool (I’ve never been to Toronto despite it just being a few hours away). Maybe for the year after that I’ll go back to Marineland, I haven’t been there since I was a baby. I’m thinking about officially writing a living will as well. My family knows my wishes for the most part but I want it all written down so there is no confusion. I registered as an organ donor too. Everything left that is usable is being donation for transplants, and anything left over is being donated to science.

Wow am I ever rambling…I’ve just been doing a lot of thinking lately about all the things I want to do before I die. Sounds a bit morbid maybe, but it cheers me up a bit thinking about all the things I still have left to do. I’ve given up on some things (like travel to certain countries that are normally very hot) but I still think about it quite a bit. Who knows…at least thinking about all that stuff keeps my mind off of worrying about the appointment on Wednesday. I know my odds of being diagnosed on Wednesday as slim to none, the most I would get is a diagnosis of clinically isolated syndrome (but at least that would still lead to disease modifying therapy potentially).

I should find out on Friday if I can get covered under my parents health insurance again (stipulations in the plan, yay. I’m too old to be covered under it unless I’m in school, so hopefully they will cover me now just with the acceptance letter instead of waiting for me to start classes). I can’t wait to start school. I used to hate going to school as a teenager but I absolutely love it now. I’m dreading some of the classes (like math and physics) but I have high hopes for biology and psychology (completely fascinated by those). I’m aiming to get a 4.0 GPA in this program, we’ll see how well that goes (was close last time, off by 0.1)

Okay, I think I’ve rambled enough. Time to go have cake and pizza for supper. I’m going to regret it, but hey, I’m still technically disease-free on paperwork so I’m going to act like it.


From → Journal

  1. I enjoy your ramblings. They are similar to what goes on in my brain. I’ve never liked the heat so traveling to cooler places has always appealed to me. One day I might venture someplace tropical and take along a nice cooling vest but for now we plan trips aroung the weather/climate.
    As for a diagnosis, I was lucky that my doc was straight forward with me. he basically said “you & I both know what’s going on but we have to jump through certain hoops to get an official diagnosis”. That meant I had to have a spinal tap. After that, he could diagnose me for real.
    I wish you luck on Wednesday and I hope you like your doc. It makes a huge difference.

    • Traveling further north has always been more likely for me anyway 😛 Much easier to travel up my province then go to a foreign country (though I still have a few other countries in mind). I keep watching travel shows and everytime they go to all these warm exotic places I start to daydream them snap out of it, thinking geez I turn to mush when it hits 30C here, no way I could handle some of those places.
      I’m hoping that my test results support that train of thought for the new neuro (sounds so weird, hoping for something to show up in my brain). I’ve heard many many good things about this doctor, the only negative I’ve heard were from patients that were probably faking it so who knows. Those few negatives I have heard though are making me worry; what if the tech that did the MRI missed something and the report says I’m clean? (they didn’t send the new doctor a disc with the images on it) Is she going to think I’m faking it too? But really…how can I have started faking a disease before I even knew what it was? I certainly never heard of MS when I was 17. Gah, I gotta stop thinking about that or it’ll drive me crazy and I’ll never get any sleep.

  2. I felt relief when I got my diagnosis….it was weird. I also spent a lot of time mourning the loss of my previous self. Everyone reacts differently but at least with a diagnosis you can move forward and get treatments. I wish you the best tomorrow! And just an FYI, I only have two or three tiny lesions on my brain and my first Neuro missed them. Most of mine are in my thoracic spine so don’t be surprised if you don’t have any lesions on your brain.
    Hope you get some sleep!

    • Thank you 🙂 At least with this neurologist the odds of getting a second MRI done regardless of what the first one showed are good (as opposed to the other neurologist who had to be convinced to expend the horribly huge amount of energy it took to fill out a damn form by a letter from my GP, and even then was extremely hesitant to order it). Given the type of symptoms I have I’d be really surprised if I only have lesions in my spine, though I wouldn’t be surprised if I do have some in my spine. Still weird thinking about it. Somehow I managed to get some sleep, now all I can really do is sit and wait to leave. I’m not patient enough for this 😛
      If the MRI didn’t show any lesions it’s going to be hard to take, even though I know that doesn’t necessarily mean there aren’t any there. It’ll be a weird mix of relief and frustration.

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