In It For The Parking

I know it's been several days since the last time that I updated this blog. For that, I genuinely apologize to you, dear readers.

I've been having a hard time recently skirting the line between me and MS-Rae. My beautiful boyfriend and I have had several difficult, but important talks over the last week or so. He wants me back to the woman he fell in love with - he wants at least a day where MS doesn't interfere with our normal lives. He wants me to not define myself by my disease, and that makes sense. That makes it kind of tough to balance things, especially with this site.

I've been so depressed, wondering if there ever will come a day where MS doesn't define what I can and can't do... I don't think it's likely, but I am still hopeful. I have no appetite right now (which you think would help me lose weight); I have no motivation to do the things that I enjoy, and despite the increased ability to do physical things, I'm so worried about potential problems occurring because of it, that I am afraid to *really* work out hard enough to make a real difference.

Adam and I both worry about me pushing too hard... but I am worried about my level of weight gain, despite eating healthfully. I just feel like I can't win - at least not even close to quickly. At the very least, I'm doing well enough that I'm slowly-but-surely getting my identity back. I learned patience with the disease.... now patience for myself... that is a new skill to learn.

I am still having seizures at nights, here and there. I called Dr. S, and they want me to do another round of lab work to see if I'm at a therapeutic level yet. I can't believe that 9 months have gone since my time in the hospital and that I'm *still* having seizures. I wonder if it usually takes this long to get seizure disorders under control.

As for the bracelets, I have fantastic pictures to fix and post, thanks to Gar.

Don't worry - I'm cowgirling up as usual.

Happy for the day:
Diet Hansen's Soda - no Aspertame, no calories, and no caffeine with lots of yummy flavors.


Diet Tangerine Lime, I think I love you.

After over 6 months of dealing with seizure disorder, MS, and all the complications that have come with it (the emotional struggles and juggled responsibilities), Adam and I were both exhausted. Even the most loving couples have their limits - and we'd hit ours.

So, being the spontaneous kind of girl that I am, I hit Hotwire and wanted to see if their 4 star hotel at a 2 star price ad campaign was real. It *so* was. We went to the San Diego Hilton Resort for one night for less than $100, and we reconnected. We went to the beach, to Balboa Park, and all along the bay. I got to walk around and feel like my old self, and I didn't have any seizures the whole time! (yay!) We remembered why we got together in the first place, and left feeling relaxed, refreshed, and with romance rekindled. (Come on, how often do you get to use alliteration? Besides, "R" is my letter. ;) )

I know we can't possibly be the only couple that is challenged by the stress, frustration, and sadness of chronic disease. I think we've got a good system though for making things better, and I think they'd be applicable to anyone in our situation. ( Read more... )

I love my boyfriend to the ends of the earth and then some. I love how much I'm learning about myself, about life, and about love through my relationship with him. I feel so lucky. :)

It has been *such* a hard several days.

At first, I was going to write a post here about suicidal ideation and compulsion in people with chronic disease.

Then, I was going to write about coping with a lack of mobility.

Then, I was going to write about dealing with both of them in a relationship...

But to be honest with you all, I don't feel like I'm in any position to write about what to do in any of those situations because I'm dealing with all of them right now and haven't come out the other side yet.

I have to say, I'm worried about myself. ( Read more... )

I wish I could tell you all that I'm through the worst. I certainly hope that I am. I'm just having a horrible time getting the motivation to do anything but sit online and read and write. I don't feel music inside me. I just don't see the point in anything I do right now. I've now sent out over 50 resumes in the last month, and I had ONE call back... and after a great interview, I still haven't gotten a second interview.

I think about how many people wish and pray to God for time to do the things they want in their life. ALL that I have is time right now, and I'm just wasting it, aside from this blog. Hell, I don't even know if this blog is gonna help anyone besides me. I guess if it even does that, it's worth something.

This cognitive dissonance is really bugging me. I hope it ends soon, and not with me having done something painfully stupid. I'm better than that.

Speed says, "Always wear your helmet! Especially when watching my movie!"

Oh hubris, thy name is Speed Racer!!! First of all, let me say that I acknowledge how absurdly stupid this move was… and yet, I was compelled. It was as if I were challenging my seizure disorder to a duel… Anyway - last night, Adam and I headed over to rent some movies, and we picked up Speed Racer, mostly as a joke, since we both liked the cartoon as kids. I figured, “Sure, this would have given me seizures in the movie theater, but SURELY not on our TV set. Besides, I haven’t had any real seizures in almost a week!”

HUBRIS, I TELL YOU! THE PRIDE BEFORE THE FALL!!!! Not 10 minutes into the movie, and I was quakin’ like the San Andreas fault. I honestly haven’t had seizures that strong or that lasted that long in MONTHS. I’m talking post-hospital strong. Sadly, I actually *wanted* to watch this movie — and now that I’ve seen some of it, I know that I would end up probably liking it because it looked so true to the style of Japanese animation while still being primarily live action. It was actually pretty awesome — not to mention there were some very cool visuals (though I wouldn’t recommend it to anyone who has decided to partake in any kind of hallucinogenic drug). Of course, ultimately the ability to watch the movie was surpassed by the aforementioned “awesomeness” of colors and motion. Shiny stuff is my kryptonite. READERS, LET THIS BE A LESSON TO YOU! It’s one thing to have your seizures under control in normal circumstances. It is quite another to watch Speed Racer. This public service announcement is brought to you by stupidity, boredom, pride, and the letter Y. Not as in, “Y not?” but rather “Y GOD Y!?!?!” and, as always, the sponsorship of Readers Like You.