Friday, May 23, 2008

Visit 9 results are in...

Well, having finally gotten the day correct, I made it to my Visit 9 checkup. This was the shortest visit of the entire trial and only involved blood draw, vitals and the EDSS test.

The same guy who evaluated me last time 3 months ago got to have the honor of doing it again. He remembered not to stand in front of me when wacking my knee with the hammer thing. I can laugh at a joke, slap my knee, and kick an innocent bystander without even knowing I'm going to. My reflexes are that strong.

He poked me with the sharp-on-one-end/dull-on-the-other thingie and I messed up some of those answers but not many. My eyes did the little jerk while trying to track him moving his pen, and he said if I were stopped for driving under the influence I would have passed the heel to toe walking just fine.

Then I got to do the 500 meter walk. Pacing the hall 23 times. At one end, the receptionist was gone and the desk was empty with the lights dimmed. At the other end, several ladies were working at their desks and discussing what they would have for lunch. They were at the Even End. The Odd End was the empty one. I was in charge of remembering which was which and what number lap I was on. The doctor jumped out into the hallway to keep pace with me briefly to ask a couple questions that he'd forgotten to cover about if I had any strange sensations etc. He then asked me the lap I was on and for a brief moment I was horrified that I had completely drawn a blank. "Fourteen!!" I finally blurted out in sudden relief. "Sorry for screwing you up," he said.

After that I said my Even lap number at the wall out loud so maybe someone at the desk would recall my last number if I forgot it. Short term memory loss is a freaky thing. I don't like it one bit.

When I got done with the test I walked back to the exam room and collapsed in the chair, exhausted. He looked at the clock and said "thirteen minutes! Very nice!" Apparently I had outdone my best record, and I attribute it to the fact that I didn't end up limping halfway through like I have in the past. He noted that as well, without my bringing it up.

I asked if I could know my score and he said that he couldn't tell me due to the "blind" nature of the study. Things like knowing my EDSS could affect the way I felt about the trial and have a "placebo effect" or something. But I asked him, trying to keep a straight, serious face "you would let me know if I scored a 10, wouldn't you, Doc??"

He wasn't sure what to think until I burst out laughing and said "Cause I'd like to know if I were dead so I could go lay down now." He eased up.

He actually did say "when you get above the 5's from 6 to 10 is greater and greater disability and eventually confinement to bed and death. I can tell you that you are below a 6. And that's all I'm going to say."

I asked him if the fact that I was walking without a cane was a giveaway or something.

All in all it was a short and sweet. I got my new meds, the supply of shorter needles (because the ones that come with the Avonex are big honkers that look like I could go totally through my thigh from one side to the other if I actually dared to use them), and then I was on my way.

The traffic gods were with me and I only caught one red light on the entire trip up there, and 3 on the way back. For a trip that takes an hour and a half, that's not too bad.

Visit 10 is in 3 months and will require an all day stay. Then, after that visit, I go into the extension phase and have to do the 6 hour check-you-heart-rate-every-hour visit. Should be fun. I'm going to remember to bring a better movie to watch than Anchor Man. The movie was more torture than all the medical stuff.

Monday, May 19, 2008

This is only a test...


The following is a test of the clinical trial updating system.

I SWEAR the last time I talked to my trail coordinator she said she couldn't schedule the EDSS test for the 19th, so I would have to come on the 23rd for that. I ASSumed that we were still on for the 19th (today) for the rest of all the usual testing.

My sister took the day off so she could drive me since the drops they dilate my eyes with are pretty heavy duty and leave me seeing as if looking through wax paper sunglasses.

All went as planned. Cooler packed? Check. Son roused, dressed, fed, sent to school? Check. Self showered and clothed? Check. Used syringes packed? Check. (How many have THAT one on their check lists?!) Everything went too smoothly. Even "rush hour" through Orange Park, FL on Hwy. 17 couldn't stop us.

We had a nice 1.5 hr. ride there and had to park On The Hill in the Overflow Lot. Arrrrg!! I hate that trudge, but we had left so early (i.e. on time) and got there so early (i.e. no glitches = early arrival) that we had plenty of time to stroll to the towers. We even went up the right tower the first time for a change. (It's a 50/50 chance and I usually screw up because I can't remember).

I sign in and we wait. Momentarily a bunch of happy people burst forth from the door I'm waiting to enter. All employees. I say to my sister "Nice to see happy people coming don't want to see grumpy ones coming out if you are about to enter and get poked and prodded."

We wait only a few minutes before the trial coordinator comes out. I'm not sure what her native language is or where she is originally from, but she has a lilting, beautiful way of speaking English and she comes to the door saying "Hi, Jeri! One moment please." She disappears and we joke about how maybe she forgot I was coming and they are rushing around back there scrambling to get me squeezed in.

Turns out we weren't far from the truth. She probably wasn't scrambling, or even frying or baking for that matter, but she was confused.

Apparently I had misunderstood when we last spoke by phone. I had been enjoying the musical quality of her voice while she had been trying to relay that my ENTIRE APPOINTMENT would be changed to the 23rd, and the 19th was no longer a go.

Like a teenager wagging her head (to the music she has plugged into her ears) as you are thinking they are in complete agreement with the chores you just laid on them, so I, too, must have been head wagging to her voice and not listening to the words. I just heard "Blah, blah, blah, Jeri. Couldn't fit EDSS in on 19th. Blah, blah, blah. EDSS on 23rd. Blah, blah, blah, blah. Okay? See you then."

My mistake.

I try to plead my case saying "Today I get the eye exam and the pulmonary function test, and all the other junk." She says "No. On visit 9 there is no eye test or lung function test or anything else. Just the EDSS, blood work and vital signs."

So I've gotten my sister out of work and wasted a gazillion dollars in gas for absolutely nothing.

We scrapped the packed lunch (since setting the fruit salad on TOP of the tuna subs flattened them to an unappealing thinness) and ate at a Crispers in Orange Park. We had to have a reason to be out driving to Jacksonville for no reason, after all.


This concludes the test of the clinical trial updating system. Had this been an actual clinical trial update, you would have been instructed on where to turn in your area for news and information.

We now return you to your regularly scheduled program.

I'll have something to report on Friday ... even if it's "No, Jeri. We discussed the 23rd. We moved the appointment to blah, blah, blah. Remember?"

It was a catchy tune, something I could really dance to. I gave it an 8.

Friday, May 16, 2008

Going bold in the bathroom

That's not what I meant. Get your minds out of the gutter.

My mom and my sister got to hear the story on Thursday when we had our weekly (weakly?) get together. They knew from phone calls that the Bathroom Remodel had reached epic proportions and was culminating in a crescendo with the Painting of the Walls.

It all started the day after John sprayed the texture on the drywall. We stood back admiring how good it looked and were just amazed at how splattering a hopperful of mud onto a flat surface, then letting it almost dry but knocking the tops off the bumps before it was hard could possibly result in anything esthetically appealing. That's when the question was posed to me: What color are we going to paint it?

I'm thinking Butter Cream or Linen Ivory or something along those lines. I had no idea that John was thinking more like Looking Directly Into The Sun Yellow, or Glow In The Dark Butter Cup.

It reminded me of when our son (who is now 9) was a baby. He remained hairless for nearly 2 years, so the issue of what sort of hairstyle he would have never came up in conversation. When he got his first haircut, however, John instructed "Don't let them cut the back. Just the sides, top and front. Let the back grow." My kid was going to have a mullet! I had no clue that was coming. Over the last several years the lady who cuts his hair and I figured out how we would gradually do away with the mullet and John would be none the wiser. Inching it up a little at a time, with each new haircut, our son now has a head of hair that approaches normal and the jokes about the Mississippi Mud Flap, Tennessee Mudslide, etc. had all but stopped.

Gradually undoing the yellowness of the bathroom may be a bit harder.

After discussing shades of yellow...mine being "Lighter than margarine?" and his reply being "No, way darker than that...more like a golden color," he went outside and came back in momentarily with his hands cupped as if he'd just caught a moth and wanted to show it to me.

It wasn't a moth, tho, it was a blossom off of my begonia that is struggling to survive and could have done without the added torture. John was cupping it in his hand and pointing to a particular petal and saying "THAT'S the yellow I meant!"

I said "sure, that looks really nice on a blossom that's less than an inch you really think it will look good spread all over the walls? That's a LOT of yellow, ya know."

"It'll be aw-right." Famous last words. Like the redneck that says "here, hold my beer a minute and watch this, ya'll," I could see that my bathroom was about to die a horrible death before it ever had a chance to be reborn.

When he asked what I thought about trim color I knew I'd better speak up or it would just be the icing on the hideous cake. "Butter Cream". Something sort of Antique White, not a tan, but not a yellow, and not a white. I remembered a cabinet we have that is that color and told him so.

"That cabinet that Larry gave us? With the trim I took off of it?"

"Yeah! That's the one. That color!"

He goes out of the room and leaves me holding a begonia blossom. He comes back momentarily with a 2 foot section of the trim I was talking about.

"Hold the flower up to it and let's see how it's going to look." (Is he serious??)

Here we are squinting, standing in the bathroom, holding up a piece of trim and a flower at arm's length and trying to image it on every flat surface in the room. I had some serious doubts.

"Yeah, that'll look good," he said. "Here's the Home Depot card. Hurry back."

So off I go. Why I let him make ME be the one to do this stuff is beyond me and always the question I am pondering when I'm on my way to go do some errand I got roped into. I walk into Home Depot looking like a total idiot with my begonia blossom on my upright palm and my trim tucked under my other arm.

Luckily there's nobody in the paint department. Not even an employee.

I grab color swatches and start trying to come close. I matched the piece of trim on the first try. The begonia was a bit more challenging.

I should have marked which petal it was that he was insistent upon. I knew it was one of the darker ones, but the problem was that the blossom was starting to wilt and was turning darker all over from being banged around and crumpled in my pocket on the trip to the store.

I choose a petal, grab a swatch and start comparing. I find several shades that do, indeed, match, but even on the swatch card (which is only several times larger than the flower itself), the yellow is bright and just too much. I couldn't imagine it on the wall.

I go a few shades lighter, all the while trying to imagine if lighter would be brighter, or if darker would be brighter. I figure anything closer to white has got to be better.

Luckily, when someone comes to help me it is a strange hippy lady who seems to love my choices and thinks it's "far out" that I brought in a flower to match. She mixes my paint and, after a short discussion at the checkout counter about how the trim was actually mine to begin with, I'm on my way.

I get the 3 cans of paint (2 of the bright yellow and 1 of the trim) plus all the brushes, rollers, trays, rags, drop clothes etc. home and we are once again standing in the bathroom. He said "I guess start with the ceiling."

I say "in the trim color, right?"

"No! I want the ceiling to match the walls!"

I didn't say it but I wanted to..."There won't be anyplace in here for someone to look in order to give their eyes a break from the visual assault."

I paint the ceiling. MAN is it yellow!

He comes in to grab a brush and get the corners for me. He's thoughtful like that.

I admit, I did say I like to paint. It's my fault. I know he loathes it.

That was Saturday.

Sunday came and he helps me set up to do the walls. Three of the walls are short due to partially being covered with tile for the shower/bath area. The fourth wall is over 12 feet long. John, being ever so thoughtful (2 days in a row!) brought me a piece of plastic shelving that was 2 feet high and roughly 3'x5' so that I could stand on it to reach the upper part of the walls. Then he was off to go play poker because that's what he does on Sundays.

I did the short walls first, fearing the long wall due to my balance issues. I was fine as long as I could hold onto an adjacent wall while painting the one directly in front of me. I could even look up and see what I was doing.

When I got to the long wall, from about 2 feet from the first adjacent wall to 2 feet away from the other one (what's that leave? about an eight foot expanse in the middle?) I was wobble legged. Only because I knew that if I looked up I would get disoriented and dizzy and that there was nothing to grab onto.

I could have rivaled Lucy in my antics to stay upright. Just so you get the image...there I am, with an old t-shirt pulled over my head as if I was going to put it on, but decided to take it back off and it got stuck coming off my head, with the shirt covering my hair and trailing down my back. (I pay a LOT to get my hair colored and YELLOW is not the color I want to pay for). Anyhow, I have my shirt on my head and my body pressed tightly against the wall with my cheek scraping it as I try to look up to see where the heck my paint roller is wildly swiping...or if I'm even making contact at all.

I slide down the wall in order to feel around for the paint tray and get another roller full. By the time I got off that 2 foot pedestal of death, I am weak all over. My arms are tired, my neck hurts, my legs are wobbly, and my left arm and cheek are yellow. Whoops.

I go out of the room and take a break. When I come back I can see that my brand new jacuzzi corner garden tub is no longer white. It's glowing yellow. Not from having paint on it, but from what I call the Buttercup Effect. Remember when we were kids and we'd pick buttercups and hold them under each other's chins to "see if we like butter"?

Surprisingly, when John came home, he didn't freak out over the degree of yellow. I'm guessing it's a macho thing. "I picked that color, therefore it MUST be the perfect color."

I figured I would hear "It's way too did you screw up color matching that begonia??!"

He did concede that it was a lot of yellow but said that once it's toned down with the trim color on the door, baseboards, crown molding, vanity, and medicine cabinet, it won't be nearly so yellow.

I'm not so sure I agree, and I wasn't sure the WOW factor would ever wear off.

Then I get my weekly email newsletter from HGTV about Bath Design...and the picture accompanying the article titled "Hip Bold Bath Colors" was one of a room that could have been my bathroom's twin. Except for everything in the photo but the walls.

The bathroom, which has been in various stages of remodeling for over a year now, is nowhere near complete. We still have to install the vanity, the marble counter top, the vessel sink, and the medicine cabinet. (I say "we" the same way John says "we" painted.) If it were really up to me, it'd have been done about 9 months ago. I guess you can't rush perfection...or John.

For those of you hoping this was going to some way be about Fingolimod, I will interject that it must be doing a phenomenal job with my MS if I am able to accomplish such a feat as painting my bathroom. A year ago I wouldn't have attempted it.

Monday will be my 9 month checkup for the trial...I'll have more news for you then.

Until Monday, if you look toward the southeastern US and see a glow, call me and I'll go close the blinds in the bathroom.

Friday, May 9, 2008

Break out the party stuff! It's been a year!!

It's my one year celebration of the last MS relapse I have had! The spots on the party hat represent healed up myelin and the fringe around the edge are my happy little axons.

If you had told me a year ago that I could go for an entire year without taking steroids, using my cane, being numb, being tired, or worrying about if this was the downhill slide into MS oblivion, I'd have never believed you. I think back a year ago to where I was...

I was doctorless since my previous neuro had suffered a massive stroke 2 years prior. The other neurologists were either a) not taking new patients, b) not taking MS patients or c) not taking medicaid. So I was suffering along, going to the ER whenever I felt a relapse was just getting way out of hand and I needed the IV punch.

My primary care doc was just as frustrated as I was. I kept going to see him and he kept saying I really needed to see a neurologist to get a handle on things. I told him I had called an MS center in Jacksonville but got almost all the way through setting up an appointment only to be shot down when I found out they didn't take Medicaid. Sheesh! Guess it doesn't pay to be self-employed and uninsured at diagnosis. You should only get MS if you are independently wealthy, fully covered by every possible type of insurance, and enjoy frittering away money on things like shots.

Anyhow, my PCP got me an appointment with the Comprehensive MS Center at Shands Jacksonville and my life changing journey began that day.

I was scared, in pain, in the grips of unrelenting MS attacks that just kept knocking me back down every time I stood up and caught my breath, like merciless waves at the beach.

Today I am in a totally new place. A place that is located on the outskirts of Normal, just a stone's throw from Mundane. The town is known as My Happy Place and if this is as good as it gets, I can live with that.

I'm going to make it a competition with whoever wants to take me on. I'm going to see just how many of these yearly celebrations I can have in a row before I get my butt kicked once again by MS. I'm realistic; I know it will happen -- I just hope it's not for a really long time.

I'll be hitting the 9 month mark on Fingolimod (or possibly Avonex, but I doubt it) on the 20th of this month. For all of you considering starting the trial (as I have read on message boards), by all means give it some thought. I can't say enough good things about this stuff....they should really be paying me to be their #1 spokesperson.

I'll be back soon to tell you about the bathroom remodel. It's chock full of side splitting hilarity....or at least now that's it's nearly over and I can look back on it. Maybe not so funny at the time.