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.

Ok, so one of the things that drives me NUTS about having my condition is that I *love* to cook, and sometimes, it's just not happening. Fatigue is a bitch, and you DON'T want to be handling sharp knives while you're really tired. It just isn't a good idea.

So here's my first MS Friendly Recipe:

Awesomely easy near-authentic tacos

Take some meat, however much you want to cook and put it in a crock pot. I cooked about a pound of the cheapest steak meat I could find. (Sirloin was on sale for $2.99 a pound!) I know you can make the same recipe with chicken, pork, and any good cut of beef. Even London Broil ought to do. Cover it in your favorite salsa. Dump the whole bottle in, at least 12 oz. per pound. For beef, you can use red or green.

For pork, I recommend a salsa verde (green). For chicken, I recommend red salsa. Keep in mind, this is the primary ingredient that's going to flavor your meat, so if you want a mango-peach salsa, it's gonna make your meat sweet. You can also use ranchero sauce or taco sauce if you prefer. I just like salsa better for long-time cooking b/c the aromatics get the chance to really flavor the meat.

Add enough water for everything to be submerged by about an inch and set the crock pot to high for 4-5 hrs or on low for 8-12 hrs.

When you're ready to eat, take out the meat, shred it with a couple of forks, and serve on tortillas (flour or corn) with whatever you like on your tacos.

Of course, this also goes great on salads, in burritos, or wherever else you'd want to use taco meat.

Easy, cheap (under $10 and will feed 3-4!), and better than just making a regular old taco kit. It lets you cook when you have energy, and is always yummy. :) That, and if you make it with lean meat, it's also good for you! Oh, and I'd recommend forks and not spoons. ;)

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.

I tried to update and ended up losing all of my posts. Thanks to the powers that be, Google had most of my posts cached!

It’s so funny to me how much like computers our brains are “on MS.” We can have all the data in the world, but when you suddenly can’t access it, you freak out! Just like the intertubes of world wide webbie place, our brains go “OOPS! 404! FILE NOT FOUND!”

Fortunately, just like me, our brains *usually* find a way around it. It just takes a while. Today, it took 5 hours. You want a good blog post from me anyway??? Gah. Fine.

Ladies and gentlemen, I give you but one piece of advice gleaned from today’s nearly tragic mishap. BACK YOUR STUFF UP! I don’t care if it’s computer files, your cell phone (You know, the one that keeps telling you to take your medicine!), your personal to-do list, the groceries you know you need to buy but haven’t yet written in list form, or even making sure you always have at least 1 pair of clean underwear, you have GOT to make sure you’ve got a backup.

And that’s really all I’ve got today. Shameful, I know, but my momma is in town, and frankly she’s more important than blogging. (Shh! Don’t tell anyone!) I don’t get much time with her, and I love her lots - so it’s off to either the mall or the park to spend some “quality time.”

Ciao for now, bellas.

Ok, I hate that Papa Roach song. Seriously.

That was yesterday, though. Blurry vision, brain fog, memory problems… kind of hating the way I have been living my life.

Today, I feel so very much better, but it’s seriously bothering me that there is SUCH a dichotomy between my mind and my body. For lack of a better way to say it, I don’t look like me anymore.

Starting in May of 2007, just before diagnosis, I’ve had almost a year’s worth of bed/couch rest. Don’t believe me? Here’s how it’s shaken out.

Botched blood patch for the spinal tap = 3 weeks in bed

5 Solumedrol treatments in the last 2 years = 5 weeks in bed

Preparing for the bar exam (Studying 10-12 hrs a day, on my butt) = 2 months

Seizure Disorder discovery and coming up on meds = 6 months

Sedentary for a full year out of 1.5 years. Ok. I can understand how I gained 40 pounds… but I don’t have to like it, and I sure as hell don’t have to take it lying down, especially since it took me the better part of a year to lose that 40 pounds in the first place.

Today, I started diet and exercise in earnest. So far, I have exercised for 40 minutes and for my meals, I’ve kept them under 400 calories each with very low fat and high protein & fiber content. I am SO incredibly glad that the medicine is working to the point that I have mobility again. So what if I can only do 5 minutes at a clip on the elliptical trainer. At least I’m doing *something.*

My fitness goal for this week: 120 minutes of exercise

My food goal for this week: Remembering all the healthy meals I used to love to cook before the MS monster came after me and I wasn’t able to cook.

I’m always looking for new, yummy, low fat meals that take fewer than 45 minutes to make. If you have any that you particularly enjoy, please share!

In that “God-has-a-sick-sense-of-humor” sort of way, the best way to fight the degenerative effects of MS is to exercise, eat healthfully, and to continue to live your life as stress-free as possible…so I’m game to give it my best shot.

Some days, it seems to be just too much to ask my body to work out… but I’m going to be giving it the same attention that I used to give practicing music - and I suggest any of you having trouble with motivation do the same thing. Take 5.

Take 5 minutes to concentrate on nothing but the particular exercise you want to do, whether it’s music, exercise, or any other skill you’re trying to gain. If you want to knock out all 20-30 minutes of practice at once, then good on you - but at least do 5. If you do it twice a day, you’re already halfway there. It makes the whole task seem less daunting.

Take a cue from these musicians and remember - laugh, and the world laughs with you. Happiness is contagious.

(BTW, I do not endorse any of their viewpoints. I just think they’re hilarious performers. And here I was thinking my performance days were over. )