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September 9, 2011

WEEKEND! It’s going to be so nice to not be hauling books and a laptop everywhere! That bookbag is destroying my back, the seams on the straps are already starting to loosen. I’m going to have to rent a locker, I’ll take care of that next week. Love all my teachers (even the math teacher, which is beyond rare), things are going more smoothly now with the head of the program. Over all a good day despite a few moments.

Going through power points about learning patterns and the brain and blah blah that kind of stuff, and seeing the word “myelin” multiple times. I couldn’t look, I just looked at the wall and tried to shut myself off.

Had the opportunity to briefly speak with my program head. She knows now about the trigeminal neuralgia (no problems with me rushing off randomly to take some meds and wait for it to pass, was just concerned about if it was dangerous or not ex: would someone have to check on me), numbness (the reason why I can’t leave my cellphone on vibrate in my pocket, have to leave it on silent on my desk where I can see it), the wait for tests (the reason why I need to be able to see my phone), some verbal communication problems and muscle problems. She does not know what I am suspected of having and does not know about the invisible symptoms or ones I can manage on my own.

Ran into the head of my old program, she remembered me despite it being a few years. Got to walk and talk with her for a bit, she was happy to hear that I’m going up a few levels in my career.  Always got along really well with her so it was nice to see her again.

Got home to find a notice in the mail from Big City Hospital Teaching Campus (not the MS clinic campus). The envelope had “contains information about your appointment! Do not throw out!” printed in huge letters across it. I flipped and ripped it open as fast as I could aaaaannnndd……it’s not for the MRI. It’s for the ultrasound (which I nearly forgot about). I’m supposed to have it done later this month during the week, but I may change that. If I go to that appointment, I’ll have to miss a full day of classes which I can’t really afford. I’m going to call the clinic on Monday if I can squeeze in the time for it between classes (if not I’ll get it done Tuesday) to see if Dr. Kickass can write a new requisition for an ultrasound at Local Hospital (that way I will only miss one or two classes, plus burn much less gas).

I may have been bombarded with spambots today, I really have no idea yet, but there is something unusual going on here. Nothing you need to worry about, it’s just messing with my stats a bit, I’m not sure what it is yet but I’ll look into it.

Lots of reading to do and some research papers to get started on this weekend. Going to try to get it all done tonight and tomorrow so I can have Sunday all to myself and spend some time in the great outdoors (now that we’re not having insanely hot weather).

Mentioned something on Twitter earlier and was just wondering: to those with relapsing remitting multiple sclerosis: has there ever been a day since your symptoms started that you physically felt normal? Not a “new normal”, and I don’t mean psychologically (I don’t expect anyone to ever completely forget that they have an incurable disease for a day). I mean physically: in regards to pain, abnormal sensations, energy, etc. Has there ever been a day since your disease started that you felt the same way you did before it all started?


From → Journal

  1. I have had days at about 90% normal-like-the-old-days but I still wouldn’t try to run or anything. Some days I have half-days of feeling nearly 100% (usually the first half of my day). After a steroid infusion(after all the side effects wear off) I feel pretty damn good too. I just wonder if I’m adjusting to it all so I think I feel normal……

  2. I’m wondering if I’m just adjusting to it too. Especially when that last multiple month long relapse was ending (I had days where I felt great especially in the morning, but was that feeling normal like I was before or was it just feeling really good compared to what I had been a few days earlier?) I haven’t tried to run in a while….nothing more than a short burst for a few feet anyway, but it’s definitely not the way it used to be. don’t want to fall so I don’t really bother trying. Maybe the reason why I can feel fairly normal sometimes is because I’m not on a whole lot of pills and such (just the tegretol, vitamins, and occasional painkiller). Part of me dreads going on medications (especially a DMD) because of how big of a reminder it will be that I’m not ok, another part of me wants to start them right now just to feel like I’m fighting back more. Really hoping I go on baclofen though, these spasms and such are just killing me, if I could get those under control I think I’d feel much more normal……

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