March 30, 2009

High School Reunion

Sometime last fall I got this email from a girl I went to high school with, announcing the 30th reunion of my high school graduation. Oh. My. God. I absolutely hated high school in Georgia, probably because my dad's job relocated us from Buffalo to Atlanta during my 16th summer. I tried to be nice a couple times and attended the 10- and 25-year reunions. I think I've paid my dues.

Oh, and the best part? The theme for the weekend is golf. In July. In Atlanta heat. Even before I had MS I hated those three things. Really just how much am I not going?

Clicking the 'No' box on the alumni web page was SO MUCH FUN.

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!

March 29, 2009

HAD to share this

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I gotta be me

Y'know, I'm witty as hell, I really am.  Apparently, not so much when I write but if you were ever to talk to me on the phone I'd make you pee your pants laughing (isn't that right Mary Anne).

Until I started this blog, the only writing I ever did was for business or school reports.  So, I can write pretty much anything without even the remotest indication of a personality; a skill that don't serve the blogsphere well.  I mean really, who wants to read a blog that doesn't have any humor or emotion in it?  I know they don't rock MY boat.

From this point on I'm going to loosen up...let my hair down...get excited...get angry...use some potentially offensive other words, just be ME.

Taking a quote from the immortal Bette Davis in The Three Faces of Eve, "Fasten your seatbelts.  It's going to be a bumpy night."  Muwahahahaha

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.

March 24, 2009

Momma never said there'd be days like this - part deux

Ten days ago I wrote about how crappy my menstrual cycle has gotten in recent years.  Today I finally started.  And I feel like a new woman.  It's just not right.

PMS sucks large.

March 21, 2009

My dog is my idol

It's late and I'm tired, but I had to get this off my chest.  Bear with me.

On January 15th of this year, my dog Wags was diagnosed with immune mediated hemolytic anemia (IMHA).  Since then he's been on 60mg of prednisone every day, along with a second immunosuppresant and an antibiotic.

He's had one accident in the house that occurred on the third day of prednisone. 

He'd like to eat much more than I feed him, but really, what dog doesn't?

He's had only one episode of what I would describe as 'roid rage.  And that's just because a Boxer was spending an inappropriate amount of time with his nose in Wag's 'basket'.  

My Wags has had to have a blood draw every Thursday for two months, with nary a complaint.

He never ceases to amaze me.  And he inspires me to take my head out of my own ass, deal with what needs to be dealt with, and continue enjoying all the beautiful things that life has to offer.  He's my dude.  And my idol.

March 17, 2009

Fingohead membership card

Started the day today back at the MS Clinic at 7:30-ish and the morning was just loaded with highlights!

First, the removal of the holter monitor.  While it's not the worst thing a doctor could do to me, 24-hours of itchy EKG lead adhesive and not being able to shower is about all I can handle.  Yes, that smell is me.  Blech.

Then a new EKG strip and HR and BP were checked again.

Finally I was presented with my own little box, holding three bottles of pills, 35 each.  I took today's dose (yep, still being stared at the whole time) and got my official "Patient Card".  Among other things it says, "I am participating in a clinical trial of FTY720, an experimental drug for the treatment of Multiple Sclerosis (MS)."  

One hour later, I was sent out into the world, to join the other Fingoheads in search of a better, injection-free MS therapy.

Here is my new ID photo:

March 16, 2009

The first day of school

After what seems like forever, I finally started the Fingolimod trial. Here is the sequence of events:

Arrived at 7:35. I was supposed to be there earlier, but on a rainy Monday in Atlanta that is simply not possible. Luckily, most of the research staff was late too! Pulse and BP were taken almost immediately, as follows:

7:40  81   129/80
7:42  80   123/80
7:44  80   121/79

Then, an EKG was run and the Holter monitor was attached. We had to wait at least 15 minutes, and that time was spent giving me my instructions for the day (which in a nutshell was "You're not going anywhere, so get comfortable").

Then the rest of the day was spent in this little room:

Once an hour, a staffer came in and again checked my pulse and BP:

08:29  Dose given
09:29  80 118/76
10:29  76  112/78
11:28  76  116/80
12:26  73 112/72
13:27  84 108/73
14:27  81 104/70

Then, one last EKG and I was sent on my merry way; I return tomorrow for Day Two. Hopefully that will only last a couple hours. At the end of that visit, I'll be given little pill bottles of my very own to bring home.

So far, so good...

March 14, 2009

Mama Never Said There'd be Days Like This

Somewhere I got the idea - or the old wive's tale - that menopause starts earlier in women who've never given birth. Well OK, I figured that meant that rather than being menopausal at 60, I might be at 55. Later I learned of something called peri-menopause. I guess that's when you still get a period, but it starts to change. And this crap can last for a decade! I never thought it could happen at my relatively young age. And I am NOT happy.

My primary complaint is the PMS fatigue. Of course I also have MS fatigue which has never been debilitating for me. But, during PMS - which can last from 2 to 10 days - I can hardly function. Ideally I would sleep through all of it because when I'm not actually sleeping I am a (barely) walking slug. My eyes are not clear. My hands are pretty useless. And walking even a semi-straight line is totally out of the question.

There are very probably people with MS who feel like this each and every day. That I cannot imagine. This once a month nonsense, even though it can last for 1/3 of a month, is bad enough. Oh, how I long for the days when PMS meant bloating and mood swings. I NEVER agreed to trade those symptoms in for this one! And I am NOT happy.

March 13, 2009

Friday The 13th? I LAUGH in your general direction!

Pretty excellent day today. Actually, I've had, three pretty excellent days this week. I'm telling you, I really dig the jump to Daylight Savings Time!

I've got my tote almost ready to take with me on Monday. The Snuggie is in the wash and a fresh pillowcase is at the ready. A brand new italian place just opened and I immediately snagged a copy of the menu. I picked out a pasta dish and a salad to buy on Sunday, refrigerate overnight, and take with me to the MS Clinic for a meal.

I spent many hours on the phone and in person with AT&T Wireless today, determined to solve a problem I've had since, I kid you not, November of 2007! I was tenacious as a terrier and refused to accept the lame-ass answers I was getting. Today proved that when you get the right person, a problem can be solved in a matter of minutes. Now I can buy a decent ringtone for my phone. Seriously. A year and a half to get that straightened out.

I got my lab reports in the mail yesterday - the ones that show my nasty cholesterol level - and delivered a copy to my PCP today. I've got an appointment with him on Wednesday morning to talk about them and see what he has to say. His receptionist was looking at them like they were written in a foreign language and had a look on her face like she was trying to formulate a question. So I stood there for several seconds, when she looked at me and said, "Ummm. Where is your name?" I burst out laughing at that because I hadn't noticed I am not identified by name (double-blind study, remember) just a code number. So we both got a kick out of that, I identified myself and everything is good. That is really a funny story but I guess you kind of had to be there.

As an aside, I also have wonky RBC morphology which basically indicates I am mildly to markedly anemic. Yeah, no shit Sherlock.

I did get a phone call from the Head Research Nurse saying they were all excited to see me on Monday and FINALLY get this party started. As you can imagine, so am I.

March 09, 2009

One more week and critters in the chimney

I'm in the home stretch. Now I can finally plan my packing list for next Monday.

DVD's - I've got the entire first season of The Big Bang Theory, a documentary about the history of the word F***, and am also considering renting Bill Maher's Religulous.

Food - I've sent an email to see if there is a microwave available if I want to pack a lunch that needs warming up. I'm thinking about some Panang Curry with tofu from my favorite Thai restaurant. If not then it'll be PB&J.

We have a little woodpecker family nesting around our chimney. Bo has been scoping the hole out with his air rifle, waiting to shoot the birdies out of the sky. Me being the critter-lover I am, I'm having fits. Spoke to a place that will remove them and take them to a birdie rehab on Wednesday. During my phone call with them I learned woodpeckers are federally protected and I can't WAIT to tell Bo he'd be breaking the law. Hehehehe.

*ADDENDUM 12:15am*

This is the email I got back from the Study Nurse:

"Good morning, Anne!
Yes we have microwave, hot and cold water. Bring what you need to keep you satisfied throughout the day. Remember you are not allowed to leave the office during the day. Do not eat before you come in so we can draw you blood fasting.
By the way your cholesterol is elevated and Dr English’s suggest that you see your PCP and start a statin drug for the hypercholesterolemia. Your cholesterol is 267 with LDL 164 which are both very high. If you need a copy, I can either mail or fax you both the screening labs in December and the ones we just repeated last week. Both are elevated. Just let me know."


March 08, 2009

Random Crap

The day we "lose an hour" is, without a doubt, the best day of the year.

I have a male friend with MS who is having some challenging times with his home life. He is one of the nicest people I've ever known and it bothers me to see the sadness in his eyes.

I got an email yesterday referring me to this, the most moving web site ever.

March 04, 2009

Every day is the dawn of a new error

Ok, so I survived the Baseline testing this morning. Yay me. Listen to THIS.

Yesterday, my BF and I were scheduled to attend an evening class at a local high school. Knowing I was going to need a little pick me up in order to make it through, I drank one of those little six-hour energy shots at about 1:00. About an hour later I'm checking emails and I see one titled "refund receipt". My first thought was it must have been a piece of spam that made it past my email filter but the senders name looked kind of familiar. So, I opened it and learned I had been credited back the class fee. Huh? I called the senders phone number (very handily added to her email signature) and yep, the class was cancelled. That in and of itself did not break my heart, but I wished I had seen the email before I drank the energy shot. Oh well.

So I'm setting my alarm last night before bed, at nearly midnight because the damned energy shot worked so well. I had to be up at 5:45am in order to have enough time to drink a cuppa coffee, shower, dress and warm the car up before a 6:50am departure. So the alarm goes off on time, I immediately head into the kitchen to get the coffee feeling very proud of myself when the BF says, "Honey, why are you up?" I respond, "Because the alarm went off, it's nearly six." To which he says, "No it's not, it's not five o'clock yet!" Huh? Great. And I've already slammed down a half cup of coffee.

Of course I arrived at the MS Center already tired. First there was blood taken, the nurse was a good sticker, got in, got blood, got out. Then there was the urine sample which was pretty easy since I'd had two cups of coffee and 16 ounces of water in the car. Then the MRI. Same old same old, room too cold and the tech cannot inject contrast material without at least two attempts. Finally, the 9-hole peg thing, the timed 25-foot walk, the godAWFUL adding of the numbers thing (although I DID do much better today than in December).

So, everything is good to go for the 16th. And I get to spend the entire day in an exam room, by myself, with no WiFi, and a door that must remain closed. Huh? No recliner? No watching people walk up and down the hall? No takeout for lunch? I'm feeling claustrophobic already...

March 02, 2009


Many times I didn't think I'd ever get here, but I managed to survive February without killing myself and March has arrived!

In two days I go do my official Baseline tests for the Fingolimod study.

Two weeks FROM TODAY I will be getting my first pill! WOO-HOO!

Doing the Happy Dance (while remaining seated of course).