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.

Football non-news

I just saw an article which says an arena football team has offered Michael Vick a $200 per week contract to play. If I read this right, there are conditions:

1. Vick has to be reinstated by the NFL.
2. He has to donate $100,000 to a local animal rescue.

What the hell? Is there just no new news ANYWHERE in this country to report? Are the Albany (NY) Firebirds so desperate to get media attention? Does anybody really believe Vick is doing anything but laughing at this? Does anybody really care?

I shoulda been a Brit...maybe

Can't believe how much I love "Britain's Got Talent". Even a...ummmm...lower class of person from any part of the UK just seem to have more class than the majority of people here do. Maybe it's the accent?? Not sure. The camera work - I THINK this is broadcast live - sucks in a big way. But the two backstage guys are hilarious!

Brain farts. Or peri-menopausal ADD.

I am not in the mood to talk about MS. Not my own nor anyone else's.

I am tired of paying the veterinarian over $200-300 a month to make my dog better. We both have an autoimmune disorder. My flare-ups are usually over and done with in a month. His has gone on since mid-January.

I gotta get the h-e-double hockey sticks out of this town for awhile.

My niece turned six a couple of weeks ago. I just bought her card today. I deserve to have my membership in the Aunt club revoked.

God, I hope I'm on some real Fingolimod and not placebo.

I wish my legs would effing stop giving out from underneath me.

I want a week - seven days in a row - without spending any money.

I enjoyed Jeff Goldblum's first appearance on Law & Order: CI tonight.

When I read a blog post that strikes me as funny, I hesitate to comment because what if the blogger did not mean it?

Springsteen is in Atlanta tonight and for the first time in 30 years I'm not there. And it doesn't bother me which is a little weird.

It's time for my yearly pap and mammo but I just can't afford it right now. That's not a whine, but a fact. And it pisses me off.

Alpharetta to Richmond

I've been sucked- in to Twitter. Yeah, another brain-sucking social networking site. But it's kind of cool to get snippets about stuff that really doesn't need any more than 140 characters.

Not going to detail the crap out of this story, but I responded to a tweet from someone who has to drive from here to Virginia for a quick weekend trip. Long story short, we are leaving here on an upcoming day at 5:30-6:00am, arriving in Richmond around 4, my friend Cathy is fetching me and we're gonna eat and hang out until I head back home at noon the next day. Yes, I'm gonna be on the road for about the same amount of time as I'll be in Richmond, but it'll be fun nonetheless. Hanging with Cathy and her horses and the neatest cat ever (Peej) and eating at my absolute favorite eatery in Richmond - The White Dog.

I'm pumped. Totally.

Provigil + Red Bull = Spazz-O-Rama

Ok so, I take 50mg of Provigil every day because, you know, staying awake as much as possible during daylight hours has always been a goal of mine. Don't get me wrong, I like a good nap every now and then but I don't want them to take over my life or anything.

For about 5 days every month I need a little extra kick that even a half dozen extra cups of coffee doesn't provide. So ok no problem I just take a second Provigil after lunch.

I'm not quite sure what I was thinking this past Tuesday morning, other than I wasn't in the mood for coffee. So I popped the top on a Red Bull, poured it over a big glass of ice, went on with my day. Unfortunately, what I ALSO did was take my morning vitamins (including the Provigil).

People . . . don't ever do that. NEVER.

aaaahahahahahahahaha!!!!

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"Will you PLEASE get out of BED?!?!?"

Got a little pissy this morning. The BF was very tired and was not motivated to do anything. Unfortunately, very tired and not motivated are basically 6 out of 7 days a week with him. Unless someone asks him to play golf or shoot guns, that is. I'm not going to pout and whine here; just know we've been together for over four years and that's the way it is with him. The causes are known, the fixes are known, he just doesn't want to work on it. So there ya go.

Well, at about 10:45 this morning, after I'd showered and dressed and the BF was still snoring, I just got a bug up my ass that I was not going to spend the day inside while he spends the day in bed. So I loaded the dogs in the car and drove to my friend Lisa's house in Sugar Hill, about thirty minutes away. [Interestingly, her husband was also in the bed, too tired to get up. No one had called him to go fishing, either.]

BTW, both of these guys have trouble sleeping at night and can't figure out why. I suspect it's because YOU SLEEP ALL *#^%(*^ DAY, but that's just a suggestion and what the hell do I know....fucking men.

Lisa and her beagle and I and my hounds had an absolutely delightful time and I didn't get home until 4:00. ::smile::

Art is in the eye of the beholder

Today was a beautiful day here in Alpharetta, GA. Sunny and mild with temps in the high 60's and topping-off at an even 70 degrees. Coincidentally there were tons of outdoor activites planned for this weekend all over the Atlanta area. Being the basically lazy girl I am, I saved my energy to stay close to home and attend the Alpharetta Art Festival in lovely downtown Alpharetta. No, I am not being sarcastic, downtown Alpharetta is a really, really cute place.

I went because I wanted to meet one of the participating artists named Cathy Dailey from nearby Athens, GA [home of the U of Ga Bulldogs and hometown of music legends REM and the B-52's]. I know Cathy from her web store on etsy.com. I find some of the neatest stuff when mindlessly trolling the internet, don't you? Check it out...and see pictures of what I bought today:

Greeting cards named "Ignoring the Cat II"- two of those, actually; "The Gathering", which is so new I don't think it's even made it to the store yet; "Tangerine", "Bubbles" and "Brown Kitty Butt". I also bought a matted print of "Tangerine" as well. I am all about the animal-themed art, especially if it gives me the grins. And her stuff definitely does that. Shiny, happy things, perfect on a Spring day!

A good day and the rest of the week hasn't sucked much either!

Okay so, finished taxes on Monday, got that off my plate.

Tuesday was the one-month drug study checkup. That began with a pulmonary function test at the hospital. While waiting I met a very, very nice woman who is recovering from recent lung surgery. Yep. cancer. She is doing pulmonary rehab in order to be able to walk for one mile. Her doc wants her to be able to walk at least that before she starts radiation in 12 weeks. In the meantime she will be getting weekly chemotherapy, starting tomorrow. We really hit it off and exchanged phone numbers. I want to keep an eye on how she's doing...

Anyhoo, after that I went to the MS Center where I donated what seemed like massive quantities of urine and blood; submitted to an EKG and a vision test that I hate: the Low Contrast Letter Acuity Eye Exam This is like a regular eye exam, but they keep switching the charts with progressively lighter lettering. It starts out with black lettering on a white background, but it ends up with the palest of gray on white. This was done with one eye, then the other, then both with each of the progressively lower contrast charts. The lowest level of contrast was a joke when I did it back in December, but this time I actually saw a few lines! I was thrilled and the nurses were very impressed.

The last piece of business was a drive to the opthalmologist. I think they're checking to see if I've had any changes to my eyeballs indicating the onset of macular degeneration. That was a good visit, nothing is showing up. Thank goodness I didn't drive myself around that day, the eye doc dilated my pupils and it was extremely sunny on the ride home.

Wednesday I was pretty much a slug. Draggy and tired and just blah.

Today being Thursday, Wags had to go to the vet for a blood draw again. He is really starting to not like going there at all and got all trembly. The poor dude! At least it's a fast visit and his hemoglobin is up to 36 which is GREAT news. He stalled for so long at 34 I was afraid he might get stuck there permanently. Other than that, I spent an insane amount of time chatting with a new friend on Facebook. She asked some 'living with MS' kind of questions I really enjoyed talking about. They also helped me come up with a really cool idea for at least one blog topic! Which is good, because I have kind of been avoiding my blog.

Oh, and the best thing today? That would be a phone call from a very good friend of ours who is cellphone-capable until midnight tonight; after that she is incommunicado until she is sent to Afghanistan. It was SO nice to hear her voice - shame that Bo wasn't home to speak to her as well though.

Say hi to Mike...

So I got my income taxes done late this morning, WOO-effing-HOO. Usually I am in a panic at 10pm on the 15th because something is always missing. Usually it's something that was left blank on my year-end Merrill Lynch statement, but my gripe about their sloppy paperwork is for another day. For today?.......I'm DONE. (At least until the IRS sends me an "Anne, you screwed something up" letter...)

Anyone who pays attention to such things will see I've added another blog to the list of ones I follow...update, May 19th: Dude got a job and isn't blogging anymore. Sooooo...ummmmm...nevermind.

This has nothing to do with anything to do with MS

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I wonder...

...why do people not respond to voicemails anymore?

Emails either sometimes.

Are they THAT busy? [I generally don't give it a thought until it's been five or more days without a reply.]

Or are they passively-aggressively saying they don't really like me?

What the HELL?!?!

Police and Fire and SWAT teams, oh my!

While on my way home from the bridal shower yesterday, I got a text from a neighbor saying, "Something is going on @ s somerset...fire police swat. Fyi when u get home u'll c it"

At the entrance to my neighborhood is a four-way stop. The main street in my 'hood is North Somerset. Go straight at the stop sign and you're on South Somerset. So I knew to expect some commotion and where it would be. Well, thank GOD my neighbor warned me! OMG. It looked like you could imagine. Law enforement vehicles everywhere, flashing lights, people standing in the street trying to catch a glimpse and two news crews.

Apparently this started shortly before 2:00, and just got busier and busier as the afternoon progressed. Everything ended at about 9:00 last night, here is the local Fox affiliate's story:

http://www.myfoxatlanta.com/dpp/news/Police_Standoff_Ends

I gotta tell ya, I've lived in this house for nearly 20 years and we have THE BEST police department anywhere. Keep in mind I don't have a great deal of experience to compare this to, but every time a cop is needed in my neighborhood, they've been just phenomenal. The only tax bill I pay without bitching is the one that comes from the City of Alpharetta. Those guys and gals ROCK.

The Wedding Shower

Today was the first day without rain in a week. Sunny and beautiful and a perfect day to spend outside, under a nice shade-tree with a book. Well, that fantasy just had to remain a fantasy because I had to go to a bridal shower.

I can't even tell you the last time I went to one of those, my god! Remember - unfortunately I can't forget - I'm in my late forties. My bridal shower days were probably between ages 25-25 I guess. I might be wrong, and I'm not going to put much effort at all into proving this, but I'm quite sure that if a friend of mine was not married by the time she was 35, she is either still (blissfully) single, or she eloped.

Anyway, the bride-to-be (I'll call her A) is 32, gorgeous, successful and has wanted to be married for as long as I've known her. Of course, like so many other young women she went through a period of dating the wrong men who were handome but with no character; and they liked having a girlfriend who had money to "loan". She's marrying a terrific guy: handsome, stable, ex-Army, City of Atlanta police officer. She's Italian, he's Cuban and they both can cook their ASSES off. Nice, nice kids and I'm very happy for them.

So this was a lingerie shower, which was much fun. There were about 20 of us, with a spread of food like nothing I've ever seen (and some I've never heard of). Ziti with meat sauce, empanadas, risotto balls, artichoke spread, mozzarella balls and basil and some other spices in olive oil, croquetas, cuban chicken spread. I probably missed some things and I probably misspelled some things, but you get the idea. And I haven't even mentioned the dessert table (holy cow)!

When it was time to go, I was standing outside with A and a couple of other girls chatting it up for maybe 10 minutes when I started to topple. Other MSers who read this can back me up here when I say that when the legs decide to stop working there is not a damn thing you can do about it. I gotta tell say, and excuse my language, I Fucking Hate When That Happens.

I was blessed to be in the presence of lovely women who did not freak out; they asked me what I needed and took care of me. They helped me to my car where I sat and cranked the a/c as low and as hard as it would go, talked to me for five minutes while I cooled off, and then I went on my merry way.

Interestingly, I'm smiling. These girls were so compassionate and curious! They all knew what MS was (as much as anyone who doesn't actually have it knows) but had no idea how it can manifest itself sometimes. They were interested in what was happening to me, after all we'd spent 90 minutes with one another at the shower and the drastic change in my ability to walk really shocked them. Poor A was upset and I felt the worst about that. We hadn't seen each other in probably a couple of years and she didn't know that I'd had some disease progression recently. Poor kid, I adore her. But I don't call or send out emails to everyone I know saying, "My last MRI showed more disease activity" or "My legs aren't as strong as they used to be" or "My bad days occur with more frequency than they used to." Why share something that's kinda depressing with friends who can't help? It just upsets them and depresses me and doesn't do any of us any good.

Anyway, as far as I'm concerned the shower was GREAT. I met some totally awesome people and OMG THE FOOD. I'm not going to need to eat again until Sunday night I bet. And I'm sure I'll sleep very, very well tonight!

It's Thursday, therefore Wags is getting a poke

Wags has had a really good week this week and I was really optimistic about the hemoglobin (a.k.a. PCV) test today. Wags was not as excited:


But, being the totally rocking dude he is, he was an excellent pup and his hemoglobin was up a point, to 35. Woo-hoo! That increase came while we've been simultaneously tapering him off Prednisone which is very exciting. Wags didn't quite get it, apparently. He would not look at me at all on the way home LOL. My dog was giving me the cold shoulder, how frikking funny is THAT?!?!



Sorry about the picure quality, I took these from my cell phone on a very overcast day. While sitting at a traffic light. With my seatbelt on.

High School Reunion, Part Two

Not only am I off the list for the reunion here, I put myself ON the list for the one in Buffalo. Some folks there are excited to see me AND offering me lodging!

And how is this for a coinkydink: that reunion is taking place the weekend of my birthday!