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.
Monthly Archives: January 2009
Losing my sight, losing my mind, wish somebody would tell me I’m fine.
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. )
Here they come, here come the seizures!
Speed says, "Always wear your helmet! Especially when watching my movie!" |
Oh hubris, thy name is Speed Racer |
| 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.  |
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!!!A Time For Everything
You take the good, you take the bad, you take them both and there you have….
A blog update!
Seriously, did you think I was watching reruns of the Facts of Life? (I so would if they were being aired!)
So yesterday, I felt *awful* most of the day. I couldn’t for the life of me figure out what was wrong. I decided that I must be sick. Blankets, tea, wool socks, the works… the constant worry of, “Oh crap, am I going to have a relapse???”
Anyway, there was GOOD REASON for me to feel like a big bag of yuck yesterday. I FORGOT MY MEDICINE THE NIGHT BEFORE! Not the Copaxone, mind you – just the rest of them… the anti-seizure meds and birth control, most importantly.
The good news is that I still didn’t have any seizures! That means that the Lamictal is up to a therapeutic dose in my bloodstream! No more going up on it! Yay!!!
This morning I woke up late and am already an hour and a half behind on my meds. It’s like subconsciously I *want* to feel bad. 
You’d think after 6 months that taking pills on the 9’s would be habit. *shrug*
Other than setting alarms (which I already have on my cell), do you all have any other suggestion to make sure I take my meds? I keep missing the appropriate time – like opening the container, getting the water, and then getting totally distracted. I’m thinking about a second alarm an hour later saying “Did you take your meds?” *shrug*
Oh! Other good news! WE GOT OUR ELLIPTICAL TRAINER!!!! IT IS AWESOME!
Oh yeah, and we have a new kitty. This one’s name is Phoenix and he’s about a year old, and is a bit of a scardy cat around the dog, but he’s SO sweet when Brisco’s not around.
Pictures and whatnot are on the way! HAPPY CATURDAY!
It comes in a can, and it’s not quite ham…
It’s SPAM!
Over 160 “comments” today to my article about new MS Meds… which were all about videos and casinos and other random BS. Thankfully, WordPress has ways to fix that crap but fast.
Can anyone explain to me *why* people bother using a bot to spam the shit out of one page? I mean, if you want to get customers, I can see 1 post per entry – but I guess the bots aren’t set up for that. Besides, who would come for MS and Seizure Disorder info, or even a glimpse into my world who would genuinely be swayed by spam on my site to go play at an online casino? Let alone an online casino who posted over 150 links…
I guess it’s my fault for letting people put their website on their comments who aren’t registered. I just don’t want people to have to register to leave a comment. *shrug* I figured it’d be easier to get interaction with my readers that way.
Anyway, I’m chilling at my friend Jenny’s house today. She’s come over to my place SO many times since I haven’t been able to drive that Adam took pity on us both and dropped me over here for a day with one of my favorite people in L.A. Why do I love this girl? Because we passed several homeless people on the way to lunch, and I asked her on the way back if we could stop at Subway, and I didn’t even have to justify to her why I was buying a footlong sandwich for a homeless person I never even talked to. I saw his halloween candy stash and just put the footlong sandwich on top. I hope when he wakes up that it makes his day.
Sushi, girl talk, a marathon viewing of How I Met Your Mother
I know I’ve said it before, but being off Keppra has been so astoundingly fantastic. I had a couple of seizures yesterday, but once again – restful sleep without nightmares, almost no brain fog, and I’m way more energetic.
So anyway, I should get back to the HIMYM marathon of goodness and continue making bracelets. I know I keep taunting you by saying, “Pictures coming soon!” but I really mean it! I’ve got several designs now.
Happy Monday, everyone.
Oh my gosh, it finally happened!
It’s like I *do* have a blog that I keep up!
Just updated the Daily and Weekly stuff. Today’s Waste of Time *seriously* cracks me up. You need to click “Spray” at least 3 times to see the majesty of the silliness on that site.
Soon Picture of the Day will be pictures that I take. (OMG, what a concept!) I’m just sorely missing graphic editing software at the moment, and I’m too hoity-toity for GIMP. (Ok, too lazy. I really liked Photoshop CS2, and I have it on my old computer. I just can’t find my installation CDs for this system.)
As for medical stuff (you know, that thing you probably come here to read about…): I’m on day 2 of no Keppra at night, and I am LOVING it. No more crushing sluggishness in the day, no more nightmares at night, and it’s like a fog has cleared in my brain. CLEARLY, Keppra and my body did not like one another.
So – 2 days of NO seizures, NO nightmares, and minimal discomfort from MS. It’s amazing! I didn’t remember I could be in such a good mood. 
It’s just awesome.
Hope you all are having a great weekend too!
It’s not how you feel, it’s how you look! Pt. 1
And you…. looook…. MAHVELOUS!
Ah, Billy Crystal, no matter how old I get, that line will still make me smile…
One of the things I like best about both MS and Seizure Disorder is that they are “invisible” illnesses. That means, of course, that a lot of us hear, “But you look great!”
For some of us, the idea of looking good but feeling like crap is a negative thing, but in my mind, I think if you got it, you should enjoy it! There’s no reason to make yourself look as bad as you’re feeling, and by taking care of your appearance, you’re more likely to feel better about yourself and you may even notice your symptoms getting better. (I’m thinking about things like depression, anxiety, dry/itchy skin from being dehydrated by various medicines, and fatigue.)
Of course, everyone will tell you the benefits of exercise, and they are numerous! …But this isn’t a post about that. It’s much more shallow. This, my friends, is a post about hair care products.
Ok, I know it’s going to sound nuts, but it seems like everywhere I look recently, there are people on MS boards and other blogs or answer-sites where people are complaining about hair loss. Now, don’t get me wrong, but *everyone* sheds more in the winter – at least that’s what I have always learned. Sure, MS can make you feel itchy, and if you scratch too much, that will lead to hair loss. There are other things to think about too, though – the meds you’re on, the amount of stress you’re under, and what kinds of things you have done or continue to do to your hair. (Bleaching, hot styling, etc.)
Anyway, I ran out of my Redken Extreme Shampoo and Conditioner recently when I mused (for at least the bajillionth time), “What am I paying for with this shampoo that makes it worth about $1/oz.?” I decided to do a little reading (Don’t Go Shopping for Hair-Care Products Without Me: Over 4,000 Products Reviewed, Plus the Latest Hair-Care Information
My hair is dry from my meds (oh yeah, and from me bleaching my hair almost white and then dying it blue and then purple…and then back to auburn), so it’s important to me that I moisturize it, have volume, and that my hair is shiny. According to the book, here are some of the best volumizing/moisturizing shampoos that cost less than $8.
- Charles Worthington Results Moisture Seal Shampoo
- ISO Color Preserve Cleanse
- John Frieda: Frizz Ease Smooth Start
- KMS Curl Up Shampoo
- L’Oreal Vive Color Vive Shampoo
(Vive Pro is good too.)
- Quantum Moisturizing Shampoo
- QUEEN HELENE Ginseng & Tea Tree Shampoo
Of course, there are others, but taking more than that from the book would seem cheap. Then again, if you ARE cheap (like me), you can always hit the Amazon site and do a search within the book for your kind of hair, and that will supply you with even more information.
Here are some of the Best Conditioners for Normal/Fine Dry or Damaged Hair for $8 or Less:
- Charles Worthington Results Moisture Seal
- L’Oreal Natures Therapy Mega Moisture Nurturing Creme
- Neutrogena Triple Moisture Deep Recovery Hair Mask
- Infusium 23 3-minute Treatment Frizz Control Intense Infuser
Anyway – when it comes right down to it, the following things will really help with hair loss:
- Using a shampoo and conditioner regimen that is made for your hair type
- Keeping your scalp in good condition by wearing a hat if you’re going to be in direct sunlight for any significant period of time to avoid a sunburn
- Brushing your hair before taking a shower or bath
- Using a wide-toothed comb to work with wet hair instead of a brush or small comb
- Using a product like Rogaine if appropriate
- Not scratching your head all the time!
- Taking enough Vitamin E, which is good for your hair and nails
- Not overprocessing or dying too frequently
I’m sure there are other things too, but that’s what stylists are for!
Happy New Year!
Hey readers! Happy new year! I got a good feeling about 2009.
In It For The Parking 