OK so, here are more tidbits from the week:
The blue fingers have not happened since I posted about them. And now that I think about it...food doesn't seem to be bothering me quite so much these days either. To be honest, I haven't had the balls to eat a banana yet, but so far everything seems to be going down ok. I guess these are good things, eh?
Thursday was a full day. First, Wags had his weekly visit to the vet. More bad news...his hemoglobin dropped yet again. He acts fine, he looks good and doesn't show any noticeable signs that he's (really) heading rapidly toward death. The new plan is iron supplements...
After that, I took my car to the local Ford dealership because the driver's side seat hadn't been acting right. [Kind of a strange thing to do immediately after a bad-news vet visit, but I had to not sit at home staring at my dog.] I've been trying to compensate for this seat issue since sometime in April, but it's been getting to where I have to slide down so far in the seat to hold the brake pedal down, it was really getting just super-irritating. When I'm at a red light, I don't need to be drifting into the intersection because I can't get enough pressure on the brake pedal, doncha think?
Anyway, the service manager messed with it and proclaimed there was nothing wrong with it; I was like,"Yeah, right, well my legs haven't gotten two inches shorter in the past month and I'm telling you the frikking seat will not move me close enough to the frikking pedals and this car is no longer safe for me to drive, so I suggest you get another opinion." Of course, the second opinion was a service technician whose time goes for $55 an hour. Some things never change...
Anyway, since I had to kill an hour, I went looking around the lot to see if there was anything I might like to test drive. Yeah well, you know how this is gonna end, don't you? They had pretty much exactly the car I've been eyeing for the past four years. A Ford Escape Hybrid. Four doors, butt warmers, room for the dogs and well-reviewed hybrid technology. Honestly, the only thing I wasn't fond of was the color (Ford calls it Black Pearl, I say it's more graphite-looking); while not gross or anything, it just wasn't what I would have picked out if I was going to customize my own, y'know?
But, he's an '08, Ford certified pre-owned, nice warranty, fun to drive, I feel safe and the more I look at him, the cuter he gets. Anybody want some company? I feel like going for a drive...
Showing posts with label Fingolimod. Show all posts
Showing posts with label Fingolimod. Show all posts
May 17, 2009
April 30, 2009
The Smurf and the Fingolimod Diet
Yeah yeah, I'm in a double-blind study and only a closely guarded database somewhere can say if I'm on real drug or placebo.
I've read every blog I could find written by a fellow lab rat. And I'm a member of the super-exclusive "Fingohead" club. But to date, I have not seen this...
Sometimes - haven't figured out the exact circumstances - 15 minutes after taking my pill, one hand turns blue. More often than not, the right one. It starts at the tips of my fingers. Sometimes it travels all the way down into my palm, but most of the time not. And my thumb is never involved. My fingers don't get cold or numb or tingly. They just turn blue. And let me make it clear: when I say "blue", I mean "Smurf".
This lasts for never more than 5-10 minutes. I've been trying to get a picture of it but haven't been successful yet. By the time I see it happening, track down my camera and get my hands to stop trembling (another MS feature), the blue has faded to the point of, "No, seriously! Look again! It's a little blue!"
Anyway, I've told everybody who needs to be told, but their responses are along the lines of, "Huh. Wow, never heard of that before." [And medical school tuitions cost how much?]
I've decided this medicine I don't know I'm actually on needs to be marketed with the tag line, "Slow down your MS and slim down your body at the same time!" Now, I'm not a large girl, just kind of average. 5'5", 138, Misses size 4-6, ok? But I am not the healthiest of eaters. If it's fried it's mine; if it's got cheese inside it or melted on top, it's mine; and fried cheese...well...
After March 16th, I started to notice some of my favorite foods where tasting different. Not like spoiled or old food, nothing like that. It just tasted...off. Fruits and vegetables were tasting over-ripe. And unappealing. And usually the result is me with what feels like a brick in my stomach that doesn't seem to want to digest for at least 24 hours.
First, it was sushi. Bo and I used to eat sushi once or twice a month. But you know, the economy being what it was - and is - we cut back on expensive restaurant meals and the last time we'd been out for sushi was middle of December. I'd been jonesing for sushi for 2-3 weeks so late March we decided to splurge. I was so excited because I knew EXACTLY what I was gonna eat and exactly how effing phenomenal it was going to be. Well, I ordered my fantasy sushi dinner and it was...ummm...a disappointment. Didn't make me hurl or anything, it just Didn't. Taste. Right. In other words, "kinda icky."
Since then, the Ick list has been expanded to include chicken slices from the deli, Velveeta, bleu cheese, caesar, poppy seed, and ranch salad dressings, bananas, Canadian bacon, bologna, espresso,Thai food, original Krispy Kreme donuts, icing, orange sherbet, Arby's Beef 'n Cheddar sandwich, and sometimes catsup. Not everything on my list seem to have anything in common, do they? They're not all high in fat or full of salt or stuff like that. And yes, it's not a bad thing to not eat creamy salad dressings and Krispy Kremes. But come on - catsup? Orange sherbet? Bananas?!
Items are added almost weekly, which means I'm sitting down to a lot of meals that disappoint...so I don't eat much. And I pretty much dread meals now. So far I am safe with Juicy Juice, Cheerios, toast, peanut butter, scrambled eggs, bacon, saltines and Campbell's chicken noodle soup (the classic condensed one with the red label). Oh, and the Zensation Zalad from Zaxby's.
Now, I can't tell you I'm actually losing any weight because I don't use a scale at home. I determine if I'm gaining or losing by how my clothes fit. And I'll just say, nothing is snug anymore. As I find new things to add to either list, I'll note them here. But, this medicine that I don't actually know I'm on is - I believe - really going to change the world of MS therapies. Dietary changes notwithstanding, I feel better than I have in a very long time. The best part? No Needle Required.
I've read every blog I could find written by a fellow lab rat. And I'm a member of the super-exclusive "Fingohead" club. But to date, I have not seen this...
Sometimes - haven't figured out the exact circumstances - 15 minutes after taking my pill, one hand turns blue. More often than not, the right one. It starts at the tips of my fingers. Sometimes it travels all the way down into my palm, but most of the time not. And my thumb is never involved. My fingers don't get cold or numb or tingly. They just turn blue. And let me make it clear: when I say "blue", I mean "Smurf".
This lasts for never more than 5-10 minutes. I've been trying to get a picture of it but haven't been successful yet. By the time I see it happening, track down my camera and get my hands to stop trembling (another MS feature), the blue has faded to the point of, "No, seriously! Look again! It's a little blue!"
Anyway, I've told everybody who needs to be told, but their responses are along the lines of, "Huh. Wow, never heard of that before." [And medical school tuitions cost how much?]
I've decided this medicine I don't know I'm actually on needs to be marketed with the tag line, "Slow down your MS and slim down your body at the same time!" Now, I'm not a large girl, just kind of average. 5'5", 138, Misses size 4-6, ok? But I am not the healthiest of eaters. If it's fried it's mine; if it's got cheese inside it or melted on top, it's mine; and fried cheese...well...
After March 16th, I started to notice some of my favorite foods where tasting different. Not like spoiled or old food, nothing like that. It just tasted...off. Fruits and vegetables were tasting over-ripe. And unappealing. And usually the result is me with what feels like a brick in my stomach that doesn't seem to want to digest for at least 24 hours.
First, it was sushi. Bo and I used to eat sushi once or twice a month. But you know, the economy being what it was - and is - we cut back on expensive restaurant meals and the last time we'd been out for sushi was middle of December. I'd been jonesing for sushi for 2-3 weeks so late March we decided to splurge. I was so excited because I knew EXACTLY what I was gonna eat and exactly how effing phenomenal it was going to be. Well, I ordered my fantasy sushi dinner and it was...ummm...a disappointment. Didn't make me hurl or anything, it just Didn't. Taste. Right. In other words, "kinda icky."
Since then, the Ick list has been expanded to include chicken slices from the deli, Velveeta, bleu cheese, caesar, poppy seed, and ranch salad dressings, bananas, Canadian bacon, bologna, espresso,Thai food, original Krispy Kreme donuts, icing, orange sherbet, Arby's Beef 'n Cheddar sandwich, and sometimes catsup. Not everything on my list seem to have anything in common, do they? They're not all high in fat or full of salt or stuff like that. And yes, it's not a bad thing to not eat creamy salad dressings and Krispy Kremes. But come on - catsup? Orange sherbet? Bananas?!
Items are added almost weekly, which means I'm sitting down to a lot of meals that disappoint...so I don't eat much. And I pretty much dread meals now. So far I am safe with Juicy Juice, Cheerios, toast, peanut butter, scrambled eggs, bacon, saltines and Campbell's chicken noodle soup (the classic condensed one with the red label). Oh, and the Zensation Zalad from Zaxby's.
Now, I can't tell you I'm actually losing any weight because I don't use a scale at home. I determine if I'm gaining or losing by how my clothes fit. And I'll just say, nothing is snug anymore. As I find new things to add to either list, I'll note them here. But, this medicine that I don't actually know I'm on is - I believe - really going to change the world of MS therapies. Dietary changes notwithstanding, I feel better than I have in a very long time. The best part? No Needle Required.
March 30, 2009
Two Week Check-up
It's been two weeks on study drug, and I had the first of several check-ups required for the first three months. It was also the first time for me to drive myself down there like a big girl. Traffic was exactly as expected and there was only one . . . no, TWO near-accidents. I can proudly report neither one was due to my driving though! Atlanta drivers, for the most part, are just assholes.
Anyway, vitals were fine. I asked to pee in a cup because I've been thinking I could be developing a UTI (love those. not) because I've been hesitating a lot. Well, my bladder hesitates a lot anyway. So the stick did have elevated white cells in it so they sent my deposit off to the lab and will call me in a few days. Meantime, lots of water and cranberry juice. Really? Duh.
The best part was this, and maybe other MSers will understand why this was so exciting. As I was leaving the building I was heading toward an unfamiliar level of the parking deck. I had my head up, looking for my car like a normal person. Unfortunately, I did not see anything notifying me there was a step down off the sidewalk. I hate that because I can't count the number of times I haven't been able to recover from an unexpected change in terrain. I shudder just thinking about it actually.
Anyway, the heel of my right foot caught the edge of the sidewalk, while my toe landed on the deck about 3" below it and guess what? I didn't freak, didn't teeter, didn't stumble, nothing! I just recovered without incident and kept walking! That was a very, very big deal and I'm still grinning!
Anyway, vitals were fine. I asked to pee in a cup because I've been thinking I could be developing a UTI (love those. not) because I've been hesitating a lot. Well, my bladder hesitates a lot anyway. So the stick did have elevated white cells in it so they sent my deposit off to the lab and will call me in a few days. Meantime, lots of water and cranberry juice. Really? Duh.
The best part was this, and maybe other MSers will understand why this was so exciting. As I was leaving the building I was heading toward an unfamiliar level of the parking deck. I had my head up, looking for my car like a normal person. Unfortunately, I did not see anything notifying me there was a step down off the sidewalk. I hate that because I can't count the number of times I haven't been able to recover from an unexpected change in terrain. I shudder just thinking about it actually.
Anyway, the heel of my right foot caught the edge of the sidewalk, while my toe landed on the deck about 3" below it and guess what? I didn't freak, didn't teeter, didn't stumble, nothing! I just recovered without incident and kept walking! That was a very, very big deal and I'm still grinning!
March 27, 2009
Oops, nearly forgot why I'm here in the first place
I just noticed the calendar - well, I look at a calendar multiple times a day but today I put two and two together - and realized I have been actively taking the little experimental pills for ten whole days and haven't said a thing about them since the 17th. Duh me.
In a nutshell, there's not a ton of stuff to talk about. I'm happy to say that because a) if I'm on real drug I'm not having any noticeable, unpleasant side effects and b) if I'm on placebo I'm not in a flare or having any other MS-related unpleasantness.
Honestly, I don't think I'm on placebo, for a few reasons:
1. The tingling in my hands which has been a constant since September is pretty much non-existent now.
2. My vision is noticeably sharper and brighter, no matter how tired I may be.
3. I am more tired than usual, which I chalk up to #4.
4. My BP and HR are about 10 points lower than usual for me, even immediately after a cig (yes, I AM trying to quit but right now I am happy with cutting back by half or greater).
All of these things are very subtle and not visible to others, but I am aware of them many times throughout every day.
In a nutshell, I just feel a little better and I am very pleased.
January 29, 2009
And the fun continues!
Got an email from my study coordinator with an updated schedule for the Fingolimod Trial:
Wanted to email you your revised schedule for study. It is as follows:
March 4 at 7:30am includes repeated testing, repeat MRI and labs (2 hours)
March 16 at 7:30 am study drug dosing, long day of observation, bring snacks, DVD’s or book to read (6-8 hours), will need driver
March 17 at 8 am study drug dosing, length of stay depends on your 1st day dosing response (2-6 hours)
March 30 at 11 am labs and vital signs (less than an hour)
April 14 at 9:30 am lung test at Piedmont at 9:30 then here for labs & EKG, then eye exam at 1:20
Now it IS a little foolish for me to add three new posts in one afternoon, but I just want to share how fast this stuff has been happening today. Pretty exciting, huh?
Wanted to email you your revised schedule for study. It is as follows:
March 4 at 7:30am includes repeated testing, repeat MRI and labs (2 hours)
March 16 at 7:30 am study drug dosing, long day of observation, bring snacks, DVD’s or book to read (6-8 hours), will need driver
March 17 at 8 am study drug dosing, length of stay depends on your 1st day dosing response (2-6 hours)
March 30 at 11 am labs and vital signs (less than an hour)
April 14 at 9:30 am lung test at Piedmont at 9:30 then here for labs & EKG, then eye exam at 1:20
Now it IS a little foolish for me to add three new posts in one afternoon, but I just want to share how fast this stuff has been happening today. Pretty exciting, huh?
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