Sunday, December 28, 2008

Hair's Lookin' At You, Kid

So I've been gone for a couple weeks. Not posting, I mean. But most of the people who even read this drivel were at Christmas dinner anyhow. You know who you are.

Now I'm back. I have, in all honesty, been trying to think of something to blather on about and I've decided I've found it. I had one of those Eureka! moments and I wasn't even vacuuming at the time.

I visited an MS message board where they were asking about others on Copaxone suffering from hair loss. If you have been a member of any MS forum for any length of time, you would have noticed the ebb and flow of the tide that washes certain topics into the forum and then back out again. Always being brought up by someone who isn't aware of the pull of the moon on these very questions.

So the topic opens with one person, whose hair is falling out, being suspicious of her medication (Copaxone) being the culprit. I remember back when I was on it, I also thought it was responsible and I read and reread the package insert, but nary a mention of that as an adverse event was to be found.

The topic continued to grow, with other MSers chiming in about how they, too, suffer from the hair on their head being less than the hair on their floor. Not everyone was on Copaxone, however. Some were on Rebif, others on Avonex, and even others that had never been on any MS disease modifying drug.

I read all these posts and one thing struck me as a common thread among us. Um, we all have MS!! (I swear Einstein was on some branch of my family tree!)

For my own personal battle with hair loss (documented by plumber receipts) I look back on it and can say, without a doubt, that it didn't matter if I was on medication, off medication or switched to different medication. The one steady factor that remained was my hair filling the brush -- and the drain -- at an alarming rate.

I could never commit a homicide (and sometimes this is the one thing that stops me) because there's no way to not leave my DNA behind. My hair would be everywhere. Heck, they wouldn't need to send it off for DNA analysis and waste all that taxpayers' money... they could just follow the trail back to my head.

So I had to find other hobbies.

The really amazing thing is not what my full length robe would look like if I had saved all that hair and knitted one, but the fact that my head is still covered with a full, luxurious mane. I bet, if you could zoom in on just one hair sprouting forth from my scalp anew, you could watch that sucker grow, kind of like a Chia Pet.

After going through several vacuums which would break and crap out, I had decided that appliances are no longer made to last and gave up. We removed most of the carpet in the house and that's when I was amazed to discover that the floor now had a new carpet after just a short time. And it was a long brown shag. No, wait, that's my hair.

Why, if it's so prevalent in the MS community for us to be losing our hair, (but it's a fact independent of our drug use), isn't anyone studying this to find the root (heh heh) cause?

Maybe it's a simple thing like a vitamin deficiency that, once addressed, would not only cure our hair loss but also our MS. Wouldn't that be amazing?! Of course that's a reach. But something is causing the hair loss. And something causes MS (but they don't know what). Maybe that's why I was never very good at science. If they don't know the cause of MS and they don't know the cause of hair loss, and I have both, then they must be caused by the same thing. I tend to reach conclusions in an unscientific way that never got me an A in class.

And wouldn't it then be funny in a cruel sort of way, if the folks who don't *think* they have MS but do have thinning hair, read this and started to worry?

So, as I sit here idly running my fingers through my hair (and then collecting the pile that came out to throw away) I wonder how to wrap this up. I think a list is in order...

List of tips to manage hair loss:
  • If you don't want to pay the plumber every 3 months to come unstop your drain, brush your hair BEFORE you shower.
  • Wear a hair net when cooking.
  • If it's long enough, keep it in a pony tail or braid. The ones that come loose have no escape, and you will leave less of a trail (especially useful if you're a homicidal maniac and don't want to get caught).
  • Quit trying to find the answer to why it's falling out. The stress of worrying about it can make your hair fall out.
  • When all else fails, blog about it. It will flesh out a post nicely. Kinda like that essay you had no desire to write but, nonetheless, had to be at least 1000 words.

Saturday, December 13, 2008

The phone call

I got a phone call yesterday that scared the wits out of me.

It was my clinical trial coordinator calling in reference to Tuesday's visit.

Like my mom, she takes forever to get to the point.

She starts out by saying "we got all your labwork back from your visit the other day..." and I'm thinking I'm about to find out something terrible. That maybe my liver enzymes were too high and I was going to be pulled from the trial. GET TO THE POINT! I wanted to scream.

Then she said "but something was wrong with your hemoglobin."

I'm enough of a hypochondriac that I know that means "blood".

I sit down with a "whump" as the air goes out of me and I collapse on the couch. I know I must have been stark white.

"Something's WRONG with my blood??" I ask.

"Yes, it was clotted and they couldn't perform the tests on it. It will have to be redrawn," she said.

"Whew!" was all I could say. "No big deal! Heh. When do you want me there?" I ask.

"Whenever you can make it up this way. Perhaps you need to come up to go Christmas shopping?" she said, trying to make the 4 hour round trip for a thimble full of blood sound appealing.

Little did she know that we are so freaking broke this Christmas that I guess I should bring my son with me for the trip so he knows that the gas money used to provide his *view* on the way is all he's getting from me this year.

I'm going back Monday and all I can say is Loreen better be back at work. She's the only one who can stick me and get blood the first try.

I knew I should have held out for making Novartis pay my gas money.

Friday, December 12, 2008

My first report card!

I woke up today and checked my email because my name is Jeri and I'm an internetaholic. For once there was a Google alert about FTY720 that wasn't from my own stupid blog.

I tore open the envelope (not really, but it sounds more dramatic then "I clicked the little line of text furiously") and found the first report from the Phase III clinical trials (that's me they're talking about).

Here's the whole story (click here).

I read it with this odd sense of pride mixed with curiosity. Like I was going to see my name mentioned or something. Or "1 patient experience this. And this, and this, and oh yeah, this."

"Her data was deemed contaminated by the fact that she is a scientifically proven hypochondriac so anything that spews forth from her facial orifice can only be taken with a grain of sodium."

Basel, December 12, 2008 - Initial results from the one-year Phase III TRANSFORMS study show the investigational oral compound FTY720 (fingolimod) has superior efficacy to a current standard of care for patients with relapsing-remitting multiple sclerosis (MS). Patients on oral FTY720 experienced significantly fewer relapses than those treated with the injectable medicine interferon beta-1a (Avonex®*)[1].

The study, the first one-year head-to-head Phase III trial against a standard of care in MS, met its primary endpoint for both doses of FTY720.

The annualized relapse rate at one year for patients given FTY720 0.5 mg was 0.16, representing a 52% reduction compared to a relapse rate of 0.33 for interferon beta-1a (p<0.001). The FTY720 1.25 mg dose also showed a significant reduction in relapses with a rate of 0.20 representing a 38% reduction against interferon beta-1a (p<0.001). No statistically significant difference was seen between the two FTY720 doses[1].

Comprehensive analyses of the TRANSFORMS study data are ongoing, and detailed results are planned to be presented at a leading scientific congress in 2009. Regulatory submissions remain on track to be completed in the US and EU at the end of 2009.


They didn't mention me at all. Go figure. They referred to us all as a group. No, more a statistical number. After all we have given of ourselves over the past year. I feel so cheap. Like I was just another notch on the ol' test tube.

Of course I'm kidding. I'm so excited I'm approaching giddiness.

So, I'm no rocket surgeon, so those percentages are a little confusing to me. I understand the part about Avonex having a 33% reduction in relapses. That's pretty straight forward. So, if I had 3 attacks a year I could expect to only have 2 while on Avonex, right?

The part I don't understand is the "52%" reduction in relapses that Fingolimod has over Avonex. It would seem to me that number is a percentage of Avonex's number. It's one of those math problems I always got wrong in school, so bear with me.

If Avonex users had 33% less attacks than someone who was on no treatment, and people who were on Fingolimod had 52% less attacks as compared to Avonex, then really the efficacy percentage for Fingolimod is what? 49%? I have no clue what that data told me. All I know is that it sounded good, right? It's good news?

But I'm bound and determined to understand this, so let's go back to school and figure it out....

If a train carrying 3 relapses is headed toward a tunnel going through a forest where a tree fell when nobody was around at a speed of 25 mph and Jane has a bottle of Fingolimod, how many relapses would still be on the train when it reaches the tunnel, IF nobody has yet claimed to have heard the tree fall?

Oh well, forget it. I thought I was getting someplace with all this, but I guess I'd just better be happy to know it *sounded* like good news. Fingolimod had a big number and Avonex had a smaller number. Big number good. I think.

Is it any wonder at ALL that, when my 10 year old came home with compound fractions to multiply, we ended up having to Google it? I will never forget, from now until the day I die, that it's numerator times numerator and denominator times denominator. I think.

Since Avonex is one of the current standards of treatment for MS, and many, many people take it hoping to lessen the severity of their disease, this is actually GREAT news about FTY720!!

Looking at the data report of the adverse events, I can now see why they were making such a big TaDoo over my little black moles I'd had all my life. 7 cases of skin cancer. That's nothing to sneeze at.

And I finally have clarification about the one poor fellow who ended up in a coma after the viral encephalitis. He must have died. It's rather sobering to realize that clinical trials can sometimes go terribly wrong.

That's the whole reason for us lab rats to volunteer. We offer up our bodies to be subjected to all the unknowns so that the FDA can say "Nope. Not safe for human consumption." and the masses are protected from something that might have hurt them.

I am doing it for a way less altruistic reason...I wanted something to slow this monster down for ME. If that ends up helping the rest of you, then I'm thrilled. But believe me, I didn't lie awake at night before entering the trial, tossing and turning because I wasn't helping blaze a trail to help all of MSkind. Nope, I was tossing and turning trying to get comfy when my spasticity and neuropathy were driving me nuts. I did it for me.

I'm just so happy that maybe a lot of other people will eventually be able to enjoy the same level of benefits I have from this stuff. From what the press release says, it's on track for submission to the FDA in 2009, so really people, it's not far off.

It really ISN'T the old "in the next 5 years." spiel we've all heard for the last 10. There really is a pill coming...and soon! Just hang in there.

Thursday, December 11, 2008

Visit Number 15

Gosh, I'm sorry I've become such a slacker about blogging. I hope I haven't lost my *knack* whatever that was.

I had visit number 15 on Tuesday and everything's still A-OK. AND...I've lost 4 lbs since my last visit which was only last week. yay! Removing your cell phone and not wearing a jacket really does help you lose weight!

I had the eye exam first and, since it is a teaching hospital, the doc had some students helping out. The first one was a lanky, shy young man who sat in on the contrast test. That's the one where you start out reading an eye chart that has black letters on a white background from 10 feet away, and then the contrast progressively lessens until you are reading glossy spots on dull white background. If the light isn't shining off it just right it's darn near impossible.

I mentioned this and she readjusted the chart so it wasn't reflecting the light at me and said "oh! we can't have any advantages or the test won't be an accurate representation." I have such a big mouth. The good thing is that by the end of the test I darn near have all the lines memorized (you do it with both eyes and then each eye separately). My luck is that I'm probably getting all the same ones wrong over and over because of it.

Then, I usually get the drops all and once and am left to *soak* for 10 or 20 min. This time was a little different. I got the work out with "how many fingers do you see" in my peripheral vision and then the color blind eye chart. I mentioned to this new student testing me that the tests assume I can both count and read. She just smiled at me nervously. I think they don't teach them how to handle smart-assed patients. Well, I think that's an important part of their training so I set about to make sure she learned something on Tuesday.

She put the numbing drops and the fluorescing yellow stuff in my eyes and then announced "I'm going to check your pressure." She didn't mention that the pressure she was really testing was to see how high my blood pressure could go before my eyes popped out of my head.

She apparently was new to the eyeball pressure test and when I was expecting the glowing purple ring to kiss my eye and back off, she had other plans. It made contact (which I couldn't feel on the surface) and then stayed there for a very long time. Then she'd back off and fiddle with the tip of the thing that goes against my eye trying to adjust it or something. I pulled my head back from the contraption you're supposed to keep your chin and forehead pressed against and saw her flicking her finger over the end of it repeatedly.

Without a shred of humor I asked if she planned on poking me in the eye again with that thing now that she mauled it. Apparently, I'm a stand-up comic who missed her calling because this girl actually laughed. When she realized I was serious, she got a Kleenex to wipe the tip off because any good doctor knows that a Kleenex is all you need to sterilize something and get all the cooties (that's a medical term) off it.

I sighed and presented my eyeball for another round of poke-her-in-the-eye. I actually could feel the additional pressure of it pushing against my eye. I mentioned to her that one time, years ago, I ended up on the floor of my eye doctor having smelling salts wafted under my nose to revive me from passing out when I was about to have the pressure test done. I think that made her nervous. She kept saying "You're doing fine. You're doing fine."

I told her "No, I'm doing excellent considering you AREN'T doing fine." By the time she moved to my left eye, she had it down. That took a whole second. I think I scared the poor girl into remembering something she read in her textbook or something.

After she was done, she put the dilation drops in my eyes and handed me a tissue, asking if there was anything she could get me. "A cold pack and an eye patch would be nice." She laughed and it was okay this time because that part was a joke....sort of.

The first student, the shy guy, came in and said he wanted to shine a light in my eyes and have a look. I said "sure."

I told him I wished I could do that. He said "what's that?"

I said "I wish I could look inside an eyeball. It must be cool to see, like a big empty ball that's all pink with veins and gunk."

It was like I had found the key to unlock this kid's personality. He started expounding on just how cool it was. You could tell he was going to make a terrific doctor just by how passionate he was about the eyeball.

We discussed the optic nerve and I was telling him that I had read in the last year or so about how it was considered to be the predictor (or maybe it was the gauge, I forget) of the severity of an MS patient's disease progress. The nerve apparently thins as the disease progresses. Don't ask me for the details because I have cognitive issues that go along with my MS and therefore all *facts* that enter my brain go through a process of being reformed into unrecognizable shapes before re-solidifying as something now carved in stone that has heretofore never been heard of. So, forgive me if I got the facts wrong about that optic nerve statement.

The student was fascinated and I'm sure he's going to get something wrong on his next test from having had that conversation with me.

The doctor came in and the rest of the test went smoothly. I was told again that I have dry eyes and to be using the tear drops. I keep forgetting that when my eyes feel sore and scratchy that it's because they are dry.

I have learned that other Fingo Heads (from our secret society meeting group with the special knock) also have dry eyes. At least one other person mentioned it. So now I'm wondering if it's a side effect. Fingolimod sucks the moisture out of your eyeballs. Hmmm Well, if that's all it does on the bad side (besides force me to eat dessert every night and slack off on exercising thus gaining weight) then I am okay with that.

Now, remind me that I have a whole 'nother post to write about the EDSS test. I hope my procrastination doesn't trump my memory so I don't put it off so long I forget the funny parts.

Back soon...I promise.

Sunday, November 30, 2008

The Hiatus Ends

I can't believe I have neglected to a) write anything or b) read anything in the blogosphere. That's gotta come to a screeching halt. I vow to write more often if for no other reason than it keeps my hands too busy to stuff food into my face. I have to lose at least 10 pounds (preferably 20) in order to fit into my jeans without the undesirable "muffin top" effect.

I'm wearing my "fat pants" lately and they are getting way too tight. I remember, at the start of this clinical trial 15 months ago, I purchased 2 new pairs of pants and they were too big. I hate trying things on in the store, but I also hate taking stuff back. I must have known this day size was coming... those 2 pairs of pants are all that stands between me and wearing my bathrobe 24/7.

I asked about the possibility of weight gain being a side effect of Fingolimod once and my trial nurse sort of laughed at me. She thinks it's more a side effect of my quitting smoking and not quitting putting my hand to my face. Maybe a carrot stick instead of a heaping spoonful of pumpkin pie with Cool Whip might help.

But the pie was on sale. I checked the carrot sticks, honest, but they're still full price. Pie and Cool Whip were BOTH marked down.

I never could understand, back when I was a smoker, how people couldn't realize they were gaining weight and just DO something about it before it got out of hand. I had heard horror stories of how people quit smoking only to balloon up. And I would think to myself "well, duh! Step away from the fork!"

But I never knew how good stuff tasted when I was a smoker. It was like I had a nicotine blanket on my tongue that kept me from reveling in the bursts of flavor, the incredible richness, the soft, subtle hints of citrus...and that was just my chewable vitamin.

I'm a total slave to flavor now. Nicotine no longer rules my life...Dove Chocolate does.

But how do you go cold turkey on food? (mmmmm cold turkey. be right back.)

Anyhow, as I was saying, how can you quit food? You HAVE to eat, otherwise you die. It's not at all like quitting smoking. When I did that, I just put them down, curled up in an achey miserable ball for 3 days and emerged from my self-induced nicotine withdrawals as a person who will forever be a smoker deep inside, but who will never take another drag as long as I am living. I have quit smoking before and started back up again before...now I know that the key to staying a non-smoker is to practice the "non" part more than the "smoker" part.

With cigarettes I didn't have to wander the aisles of the tobacco store choosing from less satisfying brands that were better choices for me. With food, I struggle with ever single item that I pick off the shelf. I debate silently in my head (because I don't have a Blue Tooth headset so people would think I was crazy if I argued with myself out loud) about if this item is a) a healthy choice b) a nutritional vs. comfort choice c) worth the money I'm blowing on it...etc. (I could go through a whole alphabet of choices I argue with myself but you get my point).

I've never in my life experienced guilt associated with food...until now. When I get up at 3 am and can't get back to sleep and find myself standing in front of the fridge I wonder if the rest of the family can here me and knows what I'm up to.

And it's not even like I'm that much overweight. I spent my teenage years being painfully thin, never hitting 100 lbs. until I had my oldest boy at 21. Then I stayed between 100 and 110 for the next 20something years.

When I had my second boy at 38 I went through a period of time when I had trouble losing the "baby fat" and when I asked my GYN about how hard it was to shed the extra pounds, his only response was to give me a wry smile and say "you aren't 21 any more." Gee thanks, I'm fat AND I'm old. And what do I owe you for pointing that out?

But now I've hit a new record for me. No longer having the crutch of nicotine to quiet hunger pangs, I give in to them instead. Without the possibility of pregnancy to explain away the extra pounds, I'm now hovering at 130. When I went to the doctor last week and stepped on the scale (admittedly, fully clothed with some apparently super heavy sneakers on) that was when I was faced with the new number with which I now wrestle.

And it's not just about the pants vs the pumpkin pie. Oh, that it were that simple.

It's about self-image vs everything I eat. It's about seeing a 10 lb sack of potatoes and visualizing 2 of them hanging around my waist. It's about my knees not enjoying the new me. 20 pounds can tire a person out more.

So, here I sit at nearly 6am, in my bathrobe because that's acceptable at this time of day, wondering when it will be alright to eat breakfast and swearing that this is going to be the day I put down the fork and liberate myself from the prison of my refrigerator, and swear off eating as a hobby and only do it for necessity.

But it's wrong to let food go to waist waste, and there's 3/4 of a pie in there that nobody's going to eat if I don't.

To all the overweight people out there, please accept my humble apologies as a formerly model-thin woman. I now KNOW what it means to struggle with food. And it's NOT an easy thing to get control of.

If anyone has any secrets for miracle weight loss (other than all those nice people whose emails end up in my spam folder for some reason) please, by all means, do share. Of course, if you DID have a secret and you shared it, I'm sure you'd make millions, so that means nobody has any miracles or I'd find it on the shelf at Walgreens.

Hey! All this random typing has kept me from eating for over half an hour. Maybe there's something to this?

I googled this:


I'll drink slightly less than half a Starbuck's Latte to that!

Sorry for all the whiny ramblings after such a long hiatus, but I do tend to blog what's on my mind and now that I got that off my chest, I can get on with the more important posts... like sharing pictures from our Cub Scout trip to the Alligator Farm in St. Augustine, FL.

I've been meaning to get to that for 2 weeks now, sorry.

Oh, and I've not had an MS attack in nearly 20 MONTHS!!! December 4 will be 20 months. I'm so freaking happy I'm doing the Snoopy dance.

Nice to talk about MS as an afterthought. :-)

Thursday, November 13, 2008

See Tracy?



I told you it was "branno".

A big warm welcome to the funny lady over at Living Life With Sarcasm, Kids, and MS because MS without sarcasm is like a day without sunshine.

Just another checkup

Wow! I can't believe how the last 2 weeks have just flown by. I don't even know what I've been doing lately. Heck, I have such issues with short term memory loss that I can forget what movie I'm watching when the show goes to commercial. Kinda scary.

I neglected to mention this at my appointment yesterday because, well, I FORGOT.

It was a 2 hour drive to Jacksonville only to have blood drawn, pee in a cup, and have my vitals taken. Then a 2 hour return trip. I was told it was to be the shortest of all my visits. Next month I'll have the dreaded eye exam and the PFT along with the EDSS and EKG. And, in keeping with the theme of all that, I think I'll take some alphabet soup with me to have for lunch that day.

Anyway, at the checkup I found out that I'd lost 2 pounds (Squeeeee!!!) right after she noticed the scale wasn't set right and cranked the knob back 2 lbs. (I'm claiming the weight loss regardless).

I also found out that my HR was 72 and my BP was 104/68. I left there feeling pretty good about myself -- like I passed some kind of test with great marks even tho the scores were beyond my control.

What made me feel even more like a winner might have been the fact that I was awarded a *prize*. The nurse came in and presented me with a black sling style backpack with the TRANSFORMS logo on it. (transforms is the acronym for the particular trial I'm in.)

I found the logo quite cute as, at first, I thought the "O" had the man in the moon on it. Upon closer inspection I could see it was a person in profile and a hand tossing a pill into their open mouth. Novartis seems to be really banking on the attraction of this med being in pill form. I guess it's not too hard to imagine that a bunch of people sentenced to stick themselves with needles the rest of their lives might dream of one day taking a pill instead.

Anyway, inside the pack was a water bottle with the logo on it and a pair of headphones.



The headphones were an enigma (better than being an enema I suppose) due to not having anything to listen to. I didn't want to question it, tho, because after all it was a gift.

But, my smart-assedness got the better of me and I couldn't resist.

"Oh nurse?" I yelled down the hall.

"yes?" she looked back quizzically.

"The iPod fell out of my bag you gave me."

After having undergone a year of my smart-assedness, she knew right away I was joking.

"Actually, they aren't giving away iPods with those bags."

"I know, I was just joking."

"They're giving DVD players, but they haven't arrived yet."

Now it was my turn to wonder if she was joking. A quick scan of her facial expression coupled with my past experience of her use of humor told me that I was indeed going to be getting a DVD player.

"Cool! You know I was only joking about the iPod. I never expected they'd give out DVD players!"

"Yep. They should be coming any day now. We'll have one for you on your next appointment."

So, what I at first thought was cool started to upset me. I mean, if they can go giving a couple thousand people DVD players for being guinea pigs, it can only mean one of two things. They are about to tell us we are all going to die from some heretofore unknown irreversible side effect, or they are going to charge out the nose for Fingolimod when it hits the market.

Maybe they'll have to call the pill "Mykidscollegefund" or "InLeiuOfMortgageThisMonth" or something fancy like that.

I did say that it would have been better to give these out on Randomization Day so that we'd have something to do during that 6 hr. observation stay.

She said "actually, there is a trial that's still recruiting, so some participants ARE getting these for Randomization Day."

She couldn't have given me any better news. By telling me they are still recruiting, she basically just told me that I'm going to be getting my meds for free for a while.

I don't have to start paying until the trials are all over and the FDA approves it.

By that time, maybe I can find someone to buy the DVD player so I can get a day's worth of meds. I better keep it New-In-Box.

Friday, October 31, 2008

What Frightens Me...on Halloween

It's not the witches or warlocks, the skeletons or the Palin effigies that frighten me most, it's the idea of serving myself up on a silver platter to the Pharma-Gods in order to experiment with my body in the name of science or at least in the name of future profits.

Granted, looking back on this past year, things have gone exceptionally well for me, but I had no clue it was going to be like this. I had that one big scare several months ago when two people had serious adverse events from Fingolimod (the one in the coma with viral meningitis and the other who died from Chicken Pox). Then I immediately had a flare up of HSV as if to test the theory of whether or not I, too, would be adversely affected if the virus was active. As a bonus fright, I was examined by my GYN and told I had a cyst on my right ovary that needed to be checked out.

Being a lab rat is not without terror. From reading over the informed consent where they present all the possible scenarios of worst case side effects, to undergoing strange tests and never knowing the results, for someone like me who is a big sissy and an even bigger hypochondriac, it's been a scary ride.

Even after surviving a year of the study and experiencing amazing results that I never even dared to hope for, I still had a chill come over me the day they handed me the updated consent to sign (reflecting the two serious *Adverse Events*) in order to get into the Extension Phase, along with my ID card I now carry.

The ID card identifies me as a clinical trial patient and explains it a little bit, then gives all the contact info for the Clinical Trial coordinator, the neuro, and the Research Department in general...just in case.

"JUST IN CASE WHAT??!" my brain screamed as I envisioned myself being wheeled into an ER from a serious accident of some sort that requires them to cut my clothes off me while I can't speak, and they see my legs are hairy (because who ever sees them, so why bother) and my undies aren't as fresh as they should be (since I apparently just got the crap scared out of me in a serious accident).

Heck, those things are scary enough, but to think somehow the reason for my visit might be BECAUSE of the Fingolimod and I might be unable to go into a long winded explanation of my situation...well that's all new fodder for the Worry Machine that is my brain.

All this sort of explained to me, in a light bulb, "aha" moment, the reason we clinical trial patients seem to have an unnatural attachment to our Trial Coordinators.

It was brought up in a recent post on the secret (well I blew that, didn't I?!) Yahoo Group for us fingo heads. It's a private group where all us lab rats ingesting chinese fungus gather to share our stories and compare notes. (If you are a Fingo Head and want to join, sign up at: http://health.groups.yahoo.com/group/fty720/).

Anyhow, someone mentioned that their Trial Coordinator left and they were feeling uneasy transitioning to the new one since they'd gotten so attached to their old one.

Having been through this very scenario myself early on in my trial, I could relate to the anxiety level the poster was feeling. I am attached to my group at the research department as well. Heck, that could be a big factor in why I signed on for the Extension Phase. They're just about the only group of real life acquaintances that I see on any sort of regular basis since I finally stopped walking my 10-year-old to class and chatting with all the school employees daily (my mother said I had to "cut the cord").

I have my Study Nurse on speed dial and she thought that was funny when I told her. What? Did she think an admitted hypochondriac who resides 2 hours from the study center would settle for anything less? I'd prefer they moved the study center next door to me and have all the staff reside on premises, but since that's not gonna happen, I have her on speed dial.

As we head off into this Halloween night, I'll be taking my little Count Dracula door to door to get his fair share of goodies. I'll also be practicing "Spread the Wealth" when we get home as I tax his bucket for chocolate.

I wanted to dress up, too, but I guess the costume I was looking for was just too scary to even comprehend. I wanted a human-sized exercise wheel so I could go as a Lab Rat. Muahahahahahahaha.

Be afraid, be very afraid.

Happy Halloween, everyone!


Hover at your own risk!

Sunday, October 26, 2008

Smores and more

Another first for me since the dawn of my MS. I spent Friday night sleeping in the woods.

My 10-year-old son, Alix, is a Cub Scout and we went on a Cub-o-ree camp out this weekend at Camp Shands in the NE Florida wilderness.

I have been fretting about this trip for weeks. Ever since I committed us to go. I knew Alix was psyched up for it, so there wasn't any option of saying "Mommy doesn't feel like it," although the closer the day got, the less I really wanted to do this.

My older son, Mark, (26) said he'd go along, too, and he borrowed this tent (center) from a friend. I'm glad he's got such nice friends with good taste in tents.



I packed every conceivable thing I thought I might need in the middle of the woods...except for a flash light. I remembered that when it got dark and I was trying to navigate through the underbrush to the bathroom facilities.

The truck in that pic was just offloading supplies. We were actually made to park in the parking area which was about 1/4 mile away down a soft sand road.

I can't tell you how many times I had to go back to the jeep for just one more thing I had forgotten to get out of it. Each time I made the trip, I returned to camp exhausted and ecstatic that I had managed to survive without collapsing in the bushes on the way back.

I collapsed in the tent on the queen sized air mattress for which I had purchased an air compressor that plugged into my cigarette lighter. (see? I thought of everything...except the darn flashlight).

The first night we set up camp, ate ham sandwiches and had the very first campfire of my young son's life. Watching his joy around the fire, interacting with the other kids and just being happy and having fun without the aid of a computer or a Xbox, well, it was just a site that I will always treasure.

He had his first Smore. "Oh MY GOSH, MOM!! I've waited my whole life to taste that and I think I just ate Heaven!!"

We laughed until I cried.

Mark has a night shift job and had a real hard time going to sleep that night. He had brought his laptop and luckily for him there was an electrical outlet up by the bathroom, so he hung out up there watching movies on his computer until 3 a.m.

5:30 turned out to be what time our camp leader had in mind for getting up because we all had to go to the Flag Raising Ceremony and we didn't want to miss it...at 8:30! In my house, we can be somewhere by 8:30 after only rolling out of bed at 8:15. These people apparently had to eat breakfast, shower, clean their tents, scrub and polish the great outdoors, and then sit around and wait another hour until it's time to go.

We have a lot to learn about the Cub Scout way of life.

Mark, who was supposed to lead the Webelos around, had opted to skip breakfast, shower, and flag raising, thereby gaining several extra hours of sleep before the Round Robin schedule of events began. Smart boy.

I went to the Flag Raising and came back to camp after having seen the flag raise.

I planted myself in a fold up chair and let the rest of them split off into groups. They went off to basketball and softball games, and then all returned at lunchtime.

In the afternoon I decided I wanted to tag along because there was going to be target practice with bb guns and archery. Neither of these activities had Alix ever participated in before.

He took so long getting his aim just right with the bb gun that my camera batteries died and the fresh ones were back at camp so I got no footage of that.

I did replenish the batteries and catch up to them at archery by driving the jeep. Here's a couple shots of the boys playing with bows and arrows:






We stayed Saturday but opted to leave that night after the Main Camp Fire Event where all the 200 campers gathered to perform skits. We wanted to stay for that because they also had a Flag Retirement Ceremony and it was the first time in my life I saw the American Flag burned and nobody got busted or was screaming or anything. Complete silence and total reverence. And I forgot the camera. It was packed up in the jeep by then.

It was the most awesome sight. To see the red white and blue slowly sink into the flames until it was nothing but ash. It was like I was watching a funeral service or something. It was moving.

We left before Smores that night. I just didn't have an ounce of strength left in me and wanted desperately to lay down on my pillow topped mattress.

Having never known his mother to NOT have MS, Alix was very understanding. He didn't complain but was thankful for the time we had.

Besides, he missed his computer and Xbox.

So, I have accomplished yet another thing I thought I never would again.

I sat in the dirt = $0
slept under the stars = $0
ate ashes, got my hand coated with cactus spines while explaining the plant to a cub scout, bathed in a building so grungy I felt dirtier when I came out, carried my own TP back and forth as if it were a credit card and I was going to be able to pay my own way = all $0...

I had fun with my two sons in the woods. Priceless.

Saturday, October 18, 2008

John and the Giant Cholesterol

This is such an amazing story that I just have to share it even tho it's not about MS, Fingolimod, or ME.

John, my boyfriend and father of my child, has always been one of those guys who took his health totally for granted. He smokes, he drinks, and he hasn't let a vegetable pass his lips in years unless you count lettuce and tomato on a Wendy's double cheeseburger as a salad.

A year or so ago he started noticing he had no energy. He also was out of work at the time due to this recession we're not having or the depression we're not in, one or the other. He's in the construction business and people just quit building houses all of a sudden.

Probably a lucky thing for him because he didn't have the energy to get out of the recliner, let alone climb scaffolding.

Then, in May of this year, his Dad passed away. He was in his 80's and had cancer, but had suffered several heart attacks before that. His brother who isn't that many years his senior has had his share of heart attacks as well.

I think facing his Dad's mortality is what caused him to decided to see a doctor for practically the first time since I've known him. What he found out was astounding.

He had super high blood pressure. I never did find out the exact number but it was 200something/100something. But that wasn't even the really disturbing part... he also has super high cholesterol. THAT number I will never forget: 1149. No, I didn't stutter on that "1", 1-1-4-9!!

Doc gave him some blood pressure medicine and a nutrition sheet about good and bad foods for cholesterol-lowering. He said he would put him on meds for the cholesterol but couldn't because John was a heavy drinker, downing a gallon of rum per week along with countless six packs. He said "if you can get your drinking down to just 2 beers per day, then I can put you on medication. Until then, my hands are tied and you are a walking time bomb for a heart attack."

When he told me all this, I was amazed myself that he hadn't yet keeled over.

So, FINALLY he's been scared straight, so to speak, and is taking the fact that "you are what you eat" is more than a saying spouted by vegetarians and other "whole food eating, Mother Earth News reading hippies". Gee, maybe they were onto something, ya think?

Over the next 3 months I witnessed a miracle. I have lived with this stubborn, set-in-his-ways man for 14 years, and never in my life would I have anticipated the change that came over him. God himself might as well have materialized on my couch and told me the end of this season's Survivor. I wouldn't have been more surprised.

He quit eating red meat, he stopped eating starches, salt, eggs...well, just about everything he ever liked.

He started scarfing down fruit and he gave up the rum. Completely. He went from 6 or 7 rum and cokes a night to zip, zilch, nada, nyete (now I'm just showing off).

His fruit habit was darn near as costly as his booze habit used to be. The man could slay an entire watermelon and ingest it's offerings in a single (or two) sitting(s).

Green grapes were also no match for the likes of him.

He started eating tilapia with a vengence. I will conceded that the fish is fried, but it's fried in canola oil. He eats grits with them and uses "No Salt" salt substitute which, it turns out, is potassium, which can aid in lowering cholesterol.

He uses Promise butter substitute, he drinks Juicy Juice fruit juice and he doesn't eat any processed foods.

He's gone from eating only take out, (because he didn't want to eat the foreign stuff our son and I were ingesting, like broccoli -- blech!) to eating only his diet on that sheet he got from the doctor.

Also, he got into my Centrum vitamins and started taking them, along with my Fish Oil pills.

He was watching TV one night and paid attention to some ad for Fish Oil/Omega3/Plant Sterol pills that combined every good thing known to man into one mighty cholesterol vanquishing sword of a capsule.

He whipped out his credit card and ordered them.

A week later he got his 3 jars of pills, plus his one free one, plus his tiny sample of CoQ10 skin rejuvenating cream.

I didn't interfere with his new regime. I just followed his wishes and fixed his meals according to his instructions.

And then the miracle happened.

He went back to the doctor at his 3 month checkup. Mainly he did this because he ran out of blood pressure meds. When he asked me, "Can't I just call them up and he can call in another Rx for me?" I told him, "No. The doctor needs to see you to evaluate if this medicine is the right one for you, so you have to go see him again."

John's reply was classic and true to his form I've come to expect:
"That's a crock of crap! They just want to get ya in there to drain you of your last buck and try to find something else wrong with you so they can keep bleeding you dry."

I roll my eyes, knowing that he probably won't ever go back and all this has been for naught.

He calls and makes an appointment. The day comes, he heads out the door and I pick myself off the floor from where I have fainted and wait for him to return from his visit.

"You're not going to believe this!" he says, "My blood pressure was 130/80! That medicine he's got me on is working."

I see a band aid on his inner arm and know they drew blood. "When will you find out about your lab work?"

"The doc said he'd call when it comes back."

Two days later we get the phone call. I listen to John's end of the conversation.

"You're kidding, right?...."

"That's incredible! Can what I was doing really have had that much of an effect?..."

"So, I don't need the meds even tho I quit drinking so I could take them?..."

I couldn't WAIT for him to get off the phone. I darn near took it away from him so I could ask a bunch of questions like the professional patient that I am. John hasn't been sick a day in his life and knows not how to wheedle information out of a doctor.

When he hangs up, he looks at me in utter amazement and says "Guess what my cholesterol is now. Just guess!"

I say "I dunno...800?"

He says "Lower".

I say "500?"

He says "Nope. Try 106."

I'm flabbergasted. (It felt weird, too. I don't get flabbergasted often.)

"So, the doc said I don't need the cholesterol meds and to just keep doing what I'm doing because it's working, whatever it is. He said it IS possible to make a change that drastic, but most people don't have the will power or self control to maintain the changes that consistently."

He may have spared himself from his family's legacy of repeated heart attacks and bypasses.

He still smokes, and he drinks his 2 beers a day, but between his son and I we're working on him about that.

Oh, and his energy has returned! No longer does he kick back in the recliner straining to lift the remote. He's up and at 'em every day, if not working at construction jobs for pay, then working on the big construction job that is our home (in various stages of remodeling).

It's good to have him back.

Sunday, October 12, 2008

1 Month Checkup on the Ext. Phase





I went on Thursday to my one month checkup of the extension phase and everything went great! I got an 8:30am eye appointment which meant she hadn't had time to get all backed up and leave me soaking in the dilating drops for a few hours. Instead, I was in and out fairly rapidly.

At one point she had me look through the thing which covers up one eye while you look through a hole with the other eye. She held a white card with a black thin-lined grid on it that had a dot in the center. Staring at the dot, I was to tell her if the lines looked wavy or anything.

"They are all double" I said.

"Blink a few times and tell me again." she said.

"Yep, they're still all double."

She whips out a bottle of drops and squirts some yellow fluid in my eyes. After I wipe the overflow off my cheeks with a tissue, she has me put my head in the vice thing (not really, but it sort of *holds* your head) while she shined a bright blue light in them.

"You have dry eyes that look like it's due to allergies. Do your eyes itch a lot?" she asks.

"Well, not until right now that you mention it. I want to rub them pretty badly." I squirmed in my chair. It was like how my nose itches whenever I fully submerse my hands in dish water.

"It's nothing. Just get yourself some eye drops and use them 3-4 times a day. That ought to help."

So I leave there and go to see my trial coordinator. I get blood drawn, get weighed, and have temp and blood pressure and pulse taken. Then they send me off to have my Pulmonary Function Test.

I check in early and sit to wait. They guy who always does my PFT stuck his head in the waiting room and said "We'll be right with you, Jeri." I say okay and thumb through a copy of AARP's magazine but I have no clue what it's about since my eyes are still dilated so I just look at the fuzzy pictures.

Some younger guy comes to get me and I swear his voice cracked as if he were entering puberty. "Come with me," he croaked. "Did you just come from the eye doctor?" he says as he checks out my paper sunglasses.

"Oh, no," I tell him, "I got these last time I was here and I just love the look."

He gave me a weird look and a wider birth.

"Yes, I just came from the eye doctor, so you can screw up all you want because I can't see what you look like or read your name tag so it's cool."

He said he was new at this and I asked where the other guy went. He said he was training him and he's "around if I need him."



NOTE:Image may not be representative of actual testing device OR actual patient. This is only a reenactment.


We went through most of the tests fairly rapidly. Then we got to the one where they use the extension contraption that I have to breath through that consists of a hookah like pipe with a hose connected to the end of it and a hole that I have to periodically cover/uncover with my finger on cue.

Turns out the important phrase in the last sentence is "on cue". The guy didn't know how to give me the instructions and *cue* me just right so between the two of us we kept screwing up. I ended up wearing out the cardboard disposable mouthpiece (for my safety) and was given a new one.

Midway through this test he is looking at some of the results and says that my lower lung volume is below the normal range and he's going to have to give me a shot of albuterol. Fortunately, a "shot" to him consisted of putting the inhaler in my mouth and depressing the canister to administer a does of stuff to inhale. No needles anywhere to be seen. Whew.

I was all panicky thinking of having to have the stuff because my son has asthma and uses a nebulizer which has a face mask and a mini air compressor that vaporizes the Albuterol so he can inhale it. It "makes his legs noodly" according to him. I've seen him get the shakes so I know just what he's talking about.

Of course I braced myself.

Nothing came.

I did the test again and scored a 90 where I had scored a 70 previously, so apparently it worked.

I asked if I should see a doctor about the need for the Albuterol. He said the trial people will see the results and advise me but he thought it was so slight that it might even have been due to getting warn out from having to redo so many of the tests. (thanks buddy!)

So I go back over to the research department and find out that another guinea pig, um, I mean patient, from my trial is there getting poked and prodded. I never did get to see him but I did hear his voice. Sounded like a nice guy and had the CUTEST baby girl with him ever. She was probably about a year or so old and just a dumpling. I got to meet her because since Daddy was getting blood drawn, the doc took the baby on visiting rounds up and down the hallway so she wouldn't witness the trauma.

All in all it was a quick visit and I stopped to get eye drops on the way home. Turns out I'm more of a sissy about eye drops than I ever was about doing shots. I can cram a 2" needle buried up to the hilt in my thigh, but quivered with sheer terror holding that eye drop bottle above my face. Guess that's a dead give away that I don't wear contacts, huh?

The drops made them quit itching all right...they burned too bad to itch. Nice idea, doc. Thanks for that.

Anyhoo, I'm feeling great. So great that I went on the Zoofari Cub Scout trip to the Jacksonville Zoo with my son yesterday. Something I would never in a billion gazillion years do in the previous 10 years. I had a great time and kept up with everyone, didn't need a cane or chair and only rested when everyone else did.

Of course today I spent mostly in the recliner lifting nothing heavier than my remote, but I'm sensing that it's from old age and not MS that I'm sore today. I'd like to blame every ache and pain on MS, but the truth is I'm not 16 any more. Honest! I know you can't believe that looking at my picture, but I'm not.

I'm 29 and holding.

Thursday, September 25, 2008

Visit 11 FTY720 Fingolimod Trial and the helpful reminders

I don't know if I'll ever top that last post... unless I break a bone or something equally as painful, but I have to pop in here and keep everyone updated on the trial since that's what this blog was supposed to be about.

I have visit 11 a week ago today. They just drew blood and took vitals that time. Next time (on the 9th) I'll have to have a PFT (Pulmonary Function Test) and an eye exam. Oh boy! The hurry-up-and-wait place. I'll be sure to bring a book.

It's been really crazy these last couple of weeks since the extension phase started. I really feel lost without the shots (I'm sure you are all boo-hooing for me). It's just that after 10 years of sticking myself with a needle either daily or weekly, now that I'm not doing it, I find myself forgetting that I even HAVE MS. Kinda like it was all a bad dream.

Oh, sure, I still have fatigue (that I blame on not getting enough sleep) and my legs like to get spastic and twitch when I watch TV at night (don't everyone's?) and I find myself forgetting stuff easily (but then so do my mom and my sister who don't have MS).

I think I've come full circle and I'm back at the Denial Stage.

I guess I have to do all the bargaining, getting angry, being depressed, and then accept it all over again.

I've gotten so complacent about the whole thing that I started freaking out that I may forget to take my pill....the whole reason I feel so great! I wouldn't be a hypochondriac/worry wart if I didn't have something to worry about.

So I decided to set up a Google Calendar and make it send me email alerts since I'm usually sitting here at the computer at 9am when I should be taking my pill.

It worked fine for the first few days until I added reminders for all the other things in my life, like Boy Scout meetings, clinical trial appointments, bill due dates, and anything else I could think of.

For some reason it quit sending me the TAKE YOUR PILL emails. In desperation, now that I had made myself dependent on an electronic device to orchestrate my every move, I decided to get the Post-it Notes virtual version.

That was fine too. You could even insist that your sticky notes are always on top, no matter what you are doing. That worked out really well until the visual portion of my screen was reduced to a hole in the middle surrounded by all the events in my life on my virtual paper scraps.

I virtually trashed all my virtual stickies and went to Yahoo to see what they had to offer.

Not only did they have a calendar which would let you create events and send email reminders, you could also set it up to send a message to your CELL PHONE! How cool! So now, if I'm not sitting in front of the computer at 9am, I'll still be sure to get the reminder because my cellphone is always in it's holster on my hip, like Annie Oakley only, instead of shooting them, I can whip it out and call 3 people standing behind me while looking in a mirror over my shoulder.

I think I have found the Mother of All Virtual Reminders and I go off about my day after setting up the most important reminder of all...the "Take Your Pill" cellphone reminder set to go off at 10 minutes before The Event.

That night I sleep until my bladder wakes me at quarter to 4. I return, not to my bed, but my recliner, for a change of scenery. Don't ask me why, I have just taken to sleeping in that chair and it's become more comfy than my bed.

I'm very nearly back to sleep when my cellphone rings, scaring the beejeebers out of me. "Something's happened to Mom or _____, or _____, or _____!" Fill in the blanks with every name in our family.

When I finally got to it, my heart was racing and I was very nearly in a panic. There's never a good news 4 am phone call unless it's someone who just gave birth and nobody in our family is currently pregnant.

I flip open the phone and I'm greeted with "TAKE YOUR PILL".

Now I'm calling Yahoo all the dirty names I had reserved for Google when their calendar drop me like a prom date with a zit the size of Houston.

Since I'm wide awake now I go investigate how 9am had become 4am.

There's no issues with the calendar. Everything appears in order. Then it occurs to me.

Set the time zone, Stupid.

This morning the cellphone rang exactly at the same time I was staring at my inbox and got the matching email telling me to TAKE YOUR PILL.

And right behind it was Google's email telling me the same thing.

After seeing all that and realizing everything was set up perfectly and knowing that I'd never have to forget another thing in my life...

I darn near forgot to get up and take my pill. I'd gone on to read other emails and 20 min. later jumped up and took it.

Next comes the Mom-nagging-back-up. If I tell her, she will call me, nag me about taking my pill, and actually tell me to go take it while she hangs on. Mom's an expert at that nagging stuff.

The great thing about all this is the idea that I could ever make it to the point of not being constantly consumed with the fact that I have MS. To not be feeling it's impact every waking moment is a fantastic demonstration of just how far I have come.

18 months with no relapses now...and somewhere along the way my legs quit burning and my hips quit hurting.

I just woke up one day and realized "hey! nothing hurts, nothing's numb, and I have this strange sensation I've not had in years....what is it?? What could that be? I know!! I feel NORMAL!!"

Friday, September 19, 2008

By Special Request...

Here's a blog post, by special request of a newbie reader, recapping my progress over the last year of the trial:

Clinical trial start date: 8/20/07
Starting symptoms:

  1. Numb legs.
  2. Severe burning in both legs from knees down.
  3. Unable to walk the grocery store (used the electric cart)
  4. Walked with a cane.
  5. Unable to run, hop, jump.
  6. Severe panic attacks that necessitated use of Xanax as needed.
  7. Depression.
  8. Spasticity in arms and legs.
  9. Extreme fatigue coupled with insomnia.

  • Bladder and Bowel *issues*. That's all I'm saying.


  • (there may have been more symptoms but I forget).

    At one year anniversary:
    Change in above symptoms:
    1. My legs aren't numb, except occasionally if I overdo it (the numbness comes back slightly but goes away with rest).
    2. Same thing with the burning -- only upon overdoing it.
    3. I can walk the entire grocery store and even PASS other slow pokes while doing so.
    4. I do NOT use the electric carts or the blue parking spaces.
    5. I don't know where my cane is.
    6. I can run across the yard, I can hop on both feet or either foot, I can JUMP!
    7. I haven't had any Xanax in at least 11 months.
    8. I'm no longer depressed. (I never took any medication for it either).
    9. My arms and legs still have some occasional spasticity.
    10. I sometimes take naps in the afternoon -- getting fatigued if I eat too many carbs at lunch.
    11. The insomnia thing I still have some trouble with. Some nights I fall right to sleep, other nights I go to sleep and wake up a few hours later, and some nights I don't fall asleep until the wee hours of the morning. It all depends. I adjust my naps accordingly.
    12. Thank God the bladder and bowel issues are over.
    13. Anyhow, that's the difference between now and then. Just last night when I was over at my Mom's house, we were all reminiscing about what I was like back then and their perceptions of the changes are even more dramatic than my own. This FTY720 Fingolimod trial has been instrumental in my breathtaking progress toward wellness, in my opinion. By coincidence, I got this link in my alert email today about Fingolimod: Stu's Views Article on Fingolimod Also, I was diagnosed in 1999 and have had at least 2 relapses per year since then. From 2005-2007 I had relapses every 3 months, with a recovery period of 3 months. I was basically suffering all the time. It has now been (drum roll please) SEVENTEEN MONTHS WITHOUT A RELAPSE!! Needless to say, I am a true believer. BTW, Cheese, this isn't the funny post I promised. It's coming tho. I have a draft I'm working on. Anyhow, thanks to all my readers -- old and new -- for following along, and this concludes the "Because You Asked" section of my blogging day. I will now return to my self-absorbed musings that try to be funny.

    The grass may be greener over there, but I'm more black and blue.

    What the heck is she talking about now??

    My sister's laughing already because she heard the story the other night at our Thursday night get together. I expected to go over to Mom's to just show everyone my newly unveiled and de-stitched scar on my back, but I ended up showing them the scrape on my stomach instead.

    My son and I had driven back up to the dermatologist yesterday afternoon for the stitch removing ceremony from my war scar of fighting the Fingolimod battle against MS. (Too much to explain, just go back a few posts).

    It was Thursday and Thursday is the day my sister and I meet over at Mom's and have dinner with Mom, my eldest son and his wife, and my granddaughter, and my 10 year old who comes with me.

    We were going to go straight there after getting back to town at 6:30 but SOMEbody had to use the bathroom and I decided to check my email. (I am seriously addicted to the internet).

    We both get done with our respective tasks and we head out the door, me first. I yell over my shoulder "Make sure it's locked!" and he did.

    I looked down at my hand. Uh oh. The keys are by the computer.

    This wouldn't have been a big deal had I not relentlessly hounded John into finishing the privacy fence. The only way in was in the back yard and it was a fortress protected by a 6 foot fence with a gate that has 2 (locked) locks.

    I look around giving the front yard my best MacGyver I Spy once over sweep in search of how to get over the fence. Aha! There's an A-frame from John's work van haphazardly leaning against the fence, as if inviting someone to climb up and over.

    My son climbs up and looks over the other side.

    "I dunno, Ma. I think I might get hurt," he says as he comes back down.

    "Oh for cryin' out loud" I say impatiently. "Here, let me have that thing." I take the A-frame from him and he points out that our old pool ladder is leaning up against the inside of the fence about 12 feet farther down.

    I take the A-frame over to where I can see the ladder between the fence slats. On this side, however, is some construction related material from John's work. Carpet padding, specifically.

    I plant the A-frame straddling the roll of padding, sure that it will work just fine even if it is a little wobbly.

    Did I mention that we live on an *arterial highway* going through our little town? And this was right around rush hour? Maximum audience.

    As I am climbing up, I am thinking to myself "heh. You'd have never caught me trying this last year! I've become darn near invincible! Good thing I wore sneaks instead of flip flops."

    And it was right about then, as I had one foot on the top rung and the other poised, mid-air to swing over the top of the fence, that I realized the A-frame was moving and it wasn't a side to side wobble. It was falling away straight out in back of me.

    As I fell down onto the top of the fence which hit me right square in the gut, I remember thinking "glad we got that square topped fencing and not that real pointy stuff!" I balanced there for a couple seconds and then began to slide. The fence top caught under my shirt and the rough, unpainted wood proceeded to peel me like a potato as gravity pulled me down.

    "YEEEEEOOOOOOOWWWWWWW!!!" was all I could manage to get out as I slid uncontrollably.

    Then I realized, to my horror, the fence had scraped right under my shirt and managed to snag under my bra and I was hanging there, in front of the rush hour traffic with my shirt and bra over my head and my feet still off the ground.

    Oh. My. God.

    So many thoughts racing through my head as my hands worked madly to try and lift my entire body weight off the fence by my snagged shirt and bra.

    "I hope my neighbor isn't watching!"
    "I hope my son isn't watching...and scarred for life!"
    "Man I don't want to find this on youtube!"
    "I hope my brand new bra isn't all womped out of shape now! I paid good money for that!"
    "That breeze feels kinda nice!"

    It was probably only seconds before I was down off the fence. Then I was so busy surveying the carnage that I forgot I had an audience and when I remembered I was frantically trying to cover back up.

    So how did we ever get the keys and go to Mom's that night, you ask?

    My son, who had fortunately been spared from witnessing the whole tragic act, was around the corner wandering and goofing off, oblivious to it all.

    When he saw me crying over my hurt dignity he asked what was wrong and I told him the fence had just beat me up.

    He puffed out his chest and strutted over to the fence proclaiming "I'm not letting MY mom get hurt again! I'm going over the fence!" He proceeded to climb with a purpose and was up and over the fence without so much as a splinter to show for it.

    He was in the back and out the front with keys in hand before my stomach and chest had even done welting up and bleeding and turning black and blue.

    So, there could be one more side effect of Fingolimod that I hadn't considered.

    The bottle should say "Caution: May cause feelings of grandeur and invincibility that could cause you to go temporarily insane and make a 47 year old do something that only 10 year olds should even attempt."

    or

    "Caution, always tuck in your shirt while taking this drug. May get hooked on fence and hang naked in front of traffic. Be sure to stay away from all fences before you know how you will react to this medication."

    or

    "Stop taking this medication and consult your physician immediately if you find yourself hanging by your shirt from your fence during rush hour with your boobs exposed for all to see. This could be a serious reaction and may need medical attention, especially if scrapes, swelling and bruising develop."

    If I have anything to say about what the warning labels will be, that should about cover it.

    Tuesday, September 16, 2008

    It's Official!! I'm on drugs!!!

    I'm so freakin' happy I can't stand it! Probably because I'm taking these:



    In all actuality, they aren't "pills" but rather "capsules" and they look more like this:

    Well, without the face, arms and "F" on it's chest, but you get the idea. I took creative liberties.

    I spent the day getting randomized yesterday even though it was anything but random. I took my very first honest-to-God, no-bout-adout-it, Fingolimod capsule. Then I waited to see if I'd have all sorts of weird side effects.

    I have had no doubt for a year now that I have been on the actual FTY720, but I would not be the professional worrier that I am if I were to neglect the opportunity I had before me to envision my horrible demise on the floor on the Research Department from heretofore unknown side effects.

    That could be why my starting pulse rate was 88. Well, for that reason and also having just spent the previous 2 hours screaming to deaf ears through my closed windows with running commentary about the driving capabilities of surrounding motorists who were hell bent on filling the space between me and the next guy. Didn't we all learn in Driver's Ed (or at least from that book the DMV hands out) that you are supposed to leave a car length for every 10 miles per hour between you and the next guy? These idiots around here think that if your bumper isn't jammed up the tailpipe of the person ahead of you, then you must be inviting them to slide sideways into that space in order to fill up the unnatural void and make everything right in the universe.

    If only they knew that my brakes worked on roughly the same principal as the ones in the Flintstone's car, maybe they wouldn't be so eager to get directly in front of me.

    This was my only form of entertainment on the drive up because I took the Jeep. It's a 95 and believe me when I say that it's had a hard life. There's no radio, so I brought along my new MP3 player chock full of all the songs I love. I made sure I packed it in my tote bag the night before so I wouldn't forget it because 2 hours of talking to myself leaves me teetering on the edge of deranged.

    Unfortunately, I was destined to arrive at the lab deranged. I was part way there and decided to dig the MP3 player out of the bag. It's a simple, cheap device that has very few buttons. I know by the feel of the contours which button does what. The on/off button refused to work, however. I repeatedly tried it and repeatedly the screen lit briefly and went off.

    I surmised that something else in my tote had leaned on the power button and caused the battery to inadvertently drain. Since I was running late after having been TOLD to be on time, I didn't want to chance wasting any more time stopping for batteries. Instead, I sang the songs "sans music" (because I can't spell that word I wanted to use and spell check refused to bail me out) while pausing to cuss my fellow motorist.

    But I digress...at any rate, that' s most likely the reason I had a high pulse rate. After an hour it went to 77 (which is still higher than normal for me).

    I brought some movies that I (cough, cough) *made* and brought with me for my viewing pleasure figuring they'd stick me in the conference room with the cushy chairs. I asked if it was available and it was, so I planted myself at the head of the big oval table and plugged my first movie, "Bucket List" into the TV/dvd player.

    I had a cooler full of drinks, a salad, a pita bread turkey sandwich, some grapes and a chocolate pudding. I had a seriously hard time not devouring it all before 10am since I had been awake since 5am and forwent (that is the past tense of forgo, is it not?) breakfast. I cracked open the container of grapes around midway through the movie and was only going to eat a couple but ended up with a grape-bunch carcass rather quickly. Oops.

    When the nurse came to take my vitals the first time I mentioned my lack of self-control and she said I had $8 worth of "meal tickets" coming to me courtesy of Novartis. How thoughtful. They shouldn't have! But I took them anyhow. As soon as the nurse left (and I know you're reading this Lorene) I devoured my lunch with wild abandon.

    Next hour, the movie was just ending and she had the tickets for me. This is when I decided to go for a walk in search of batteries for the MP3 player. The nurse suggested the pharmacy across the street. Sounds close, huh? Well, in actuality, it was 8 stories down, across a humongous parking lot, a 4 lane divided highway, and across another parking lot that was up a hill that has no business being in Florida.

    I walked over to find out that there's no place to buy batteries there unless I wanted to walk to Walgreens -- another 4 city blocks in the direction that takes me away from the Research Dept. I looked at my cell phone (because my watch battery died eons ago and I have yet to replace that one, too). It was 40 min. until my next vitals check. No dice. I just didn't trust myself to be able to "hurry". I trudged back down the hill, across the street, and across the parking lot. I got there with 30 min. to spare.

    That's when I went and got lunch with my meal tickets. Yeah, I know I just ate the one I had packed, but this cafe in the medical building only serves during a certain time period and I didn't want to miss out. (sounds good on paper.)

    Glad they told me it was teriyaki chicken because even playing 20 questions, I'd have never guessed. They are creative dish namers. Suffice it to say I'm so glad it was play money and none I'd had to cough up.

    I returned upstairs to the nurse's office/supply room (really, Lorene, you need to complain about that) and retrieved my cooler (which still had drinks) and was placed in an exam room and given a portable DVD player to resume my movie watching. Seems they sometimes use the conference room for conferences around lunch time and I really didn't need that big of a place to stagnate.

    She set up the DVD player and my homemade DVDs all refused to work. I brought a book (and the now useless MP3 player) as backup, but we all know the MP3 player was out of commission and reading always puts me to sleep. That's when she came up with a novel idea.

    She told me that the McDonald's which was 4 city blocks away, has a Red Box where I could rent movies...if I felt like walking that far. So, she took my vitals and I was again off, out the door.

    I debated driving as it didn't seem like that far of a walk. I'd been to that McD's before and my recollection told me that it was pretty close. I didn't stop to think I had always driven there before. I should have realized that if I didn't see it when I looked up the street, then it was farther than I should be making myself walk.

    But the Jeep was occupying prime real estate in the parking lot and no amount of bribing would get the attendant to hold it for me. "You have to take your chances," she said.

    So, in a blond, senior citizen type moment (did I offend enough people yet?) I decided that leaving my car in it's ideal spot while I walked 4 city blocks, just so I wouldn't have to walk a little farther in the parking lot when I drove back from McD's was the more logical thing to do.

    Maybe it was a Finglimod side effect... do something totally illogical and only realize the error of your ways when you are at the farthest point (a.k.a. McD's) before you realize what a blunder you have made.

    I took quite a while picking out my movies. It was blazing hot outside and I had chosen to wear black (in keeping with my day's decision-making Theme of Stupidity).

    I felt my legs go all rubbery on the way back. I could feel my pulse pounding in my neck, I was on autopilot floating along just hoping I could make it back at all, let alone before the next vitals check. Heh...I might not have any to check at this rate.

    I got back somehow and sat on the curb right in front of the building because I still had a half hour. I hadn't been gone long, but the walk seemed like it had taken days and I should be in another state by now. The only state I was in was one of exhaustion.

    I took the elevator back up to the 8th floor and Lorene said "did you see Walgreens? It was right across the street from McDonald's."

    "Yes, I saw it, but there's no way I could have ever crossed that street, shopped for batteries and been back in time for the vitals check." It was all I could do to keep from laying down on the bench at the bus stop and taking a nap.

    "I'll go there in the Jeep after this is all over," I said in a brief moment of lucidity.

    She left me alone in the exam room with "Baby Momma" playing. I ate my pudding and drank another soda while I was begging the movie to be worth the walk. It was cute but "worth it" was debatable. The second movie was Charlie Wilson's War and while I probably could have watched it at home, it started off slow and threatened to put me to sleep. Since I didn't have a pillow and binky, that wasn't an acceptable outcome.

    I did an encore of Baby Momma for the last hour.

    I got my last vitals check and the ending EKG.Oops! I forgot to mention the first one, and ya'll are probably more interested in the specifics of the clinical trial than hearing me blather on about driving, lunch menus, olympian walks, and batteries, but that's the beauty of being Emperor of The Blog -- I write what I want to and you must suffer the consequences or click that "next blog" link at top left and take your chances. (Are you out of breath reading that last sentence yet?)

    Anyhow, I got my EKG and when the doc who oversaw the Randomization took a look at the printout, she said I had a "real nice looking heartbeat". At 47 you are more appreciative of hearing that than if someone had said "nice butt". I'm glad my heartbeat looks good...especially after having the Real Deal running through my veins all day for sure.

    When it was all over, they gave me a To Go bag with 3 pill bottles in it and a new appointment scheduled for 2 weeks from now. NO MORE NEEDLES!!! YAYAYAYAYAY!!

    I left there happy and walked the short distance to the Jeep, now thankful I'd walked to McD's earlier since that was safely in the Past and this short walk was in the Now. (Kind of like when I do the dishes the night before and wake up to the surprise of a clean kitchen, same principle.) I got in and drove the 4 blocks to Walgreens and went in to get my batteries.

    When I came out, I pried the back off my MP3 player and plugged the new energy unit in. I turned it on. It came on and went off...just like before.

    I dug my bifocals out of the totebag, mystified that it wasn't working. I tried again.

    The tiny screen had one even tinier word on it. "LOCKED" it said. I messed with all the buttons. It didn't take long to figure out that one on the bottom of the device, which I had tried to figure out yesterday what it did, was the one that locked it from being accidentally turned on as I had suspected happened all along. Sheesh.

    I listened to music the whole way home and didn't cuss much at all at my fellow drivers. After all, I was on my Happy Pills.

    And that ends the day's events. Now it has been proven beyond a shadow of a doubt that I can write for a very long time about 6 hours worth of absolutely nothing (10 if you count the drive). I missed my calling. I should have been a writer for Seinfeld.

    If you're still here reading, for God's sake, get a life. (Just kidding, thanks for reading!)

    Saturday, September 13, 2008

    No news is good news!

    At least when it comes to me and blogging. It seems as tho if I don't have a predicament or dilemma to write about I forget to write.

    I left off last time with a cliff hanger and had a couple people write to ask what the heck ever happened. I was going to wait until the fall line up to have everyone tune in then to see how the cast of characters did. Seeing as how my little blog is not being premiered on national television in prime time, I guess I can just go ahead and post what happened now and relieve all the suspense.

    When last we left off I was whining about my back hurting from getting Frankensteined and contemplating in hopeful expectation the idea of being Randomized on Wednesday. Later on that day (Tuesday) I got a call from the trial coordinator saying my new "stash" was in and I could come up and get it. As crazy as this may sound, I told her it would have to be the next day. In all my excitement of self-centeredly getting wrapped up in my own made-for-TV mellowdrama, I completely forgot that I had to take my mom to the doctor's that afternoon.

    So I drove up Wednesday and got my fresh bottle of Heaven in Pill Form...and a box of shots. DOH! They wanted me to do one more lousy shot before I start the extension. Is this some cruel joke? I already had the Last Shot Ceremony and had mentally prepared myself for a life of never having to poke myself again. DRAT!

    "I have to do another shot??!" I said in my most whiny, childlike voice supposing the force of my annoying tone would alone be enough to make her cave and say "Nah, I was just joking, it's a box of popcorn. Enjoy!"

    But she was the trial nurse, and she's no slacker. She's studying to be one of the Research people who travels around from center to center putting the fear of God into everyone while checking to make sure they are doing everything by the book. To let me skate on taking the shot, regardless of its most assuredly water-like placebo content, would go against her training and all she is working towards.

    While we were debating the shot, I popped the top on the new bottle of pills and swallowed one right there. Ahhhhhh!! The magic of the mind. I instantly felt "right" again. Like it was the final piece in the health puzzle that made me feel normal....must like I imagine a junky feels when they get their fix.

    While I was basking in a Fingolimod glow, I was told that Wednesday was off and I would be coming up on Monday the 15th to get Randomized. I don't know why they call it that -- it's anything but random this time as I will take my first honest to God bona fide Fingolimod capsule, never to wonder again if I'm getting the real deal or not. (Like I have any doubt!)

    So, Monday I leave at the crack of dawn to make the 2 hour trip to arrive for my dose at 8 sharp. Luckily I'm a morning person.

    I'm packing a cooler and bringing a book, an MP3 player, a couple dvd's and anything else I can think of to entertain myself.

    I wish they'd just let me leave and come back on the hour. It's right smack in downtown (just about) Jacksonville and there's lots of stuff to do there. Seems like the only time I am ever in downtown Jacksonville it's not to go to museums or art galleries, but to go to the hospital. *sigh*

    I'll take my camera, at least, and see if I can get some of the players to pose for blog pics....or take a couple of me being bored.

    Until Monday... thanks for playing along. I appreciate that someone out there cares.

    Tuesday, September 9, 2008

    My Impression of Frankenstein

    I finally had my appointment for The Excision with my dermatologist yesterday. Having never had an excision, I imagined it would be the same as the biopsy only take off a little more.

    Imagine my surprise when I saw the tray full of sharp things, pokey things, and what looked like a miniature cattle prod.

    I lay face down on the table and my shirt was hiked up just enough to expose my midriff. As places to grow moles go, I guess this was pretty convenient. The tray full of torture equipment was right next to my head at eye level to evoke maximum anxiety. It worked like a charm.

    The nurse, after watching me squirm around trying to get comfortable said "I'm sensing a LOT of anxiety here! Your imagining too much; it's really going to be nothing."

    I said "Nothing? Really? Then I can go now?"

    She said, "Take a few deep breaths in through your nose and relax."

    She went out of the room and came back with a small blue box about the size and shape of a car battery charger. It had wires coming out of it that looked a little like a jumper cable. She placed it under the table and plugged it into the wall. I could see all this by peering through the small gap between the table and headrest.

    Then she placed a metal plate on the table that was hooked to wires that led to the box. She instructed, "When I tell you, put your had on the metal plate."

    I looked at her like she was a three headed monster who wanted to eat me and said "Wha-what is that th-thing?"

    "It's a ground plate for..."

    "La-la-la-la-la! I can't hear your! La-la-la-la-la! Honestly, the less I know the better. If I ask about any of the sharp or pokey things or the wood burning tool, just ignore me, k?"

    Why do people laugh at me? I guess it's the way I phrase stuff, and maybe the fact that when I get stressed out I deal with it with humor. I was a freaking stand up routine laying on my stomach at this point.

    The doctor came in and started saying stuff in code to the nurse and scribbling around in my folder. I think they were playing Hang Man, or Tic-Tac-Toe, but he wasn't giving her a chance. He was cheating, I think.

    I cleared my throat and spoke up, "Doc, I emailed your brother (my neuro who is the lead investigator in the clinical trial -- how convenient!) and asked him to help me get these results expedited so I can be assured to make the deadline for the extension phase."

    Doc said "Yeah, we spoke over the weekend. He started off by trying to explain who you were as if I didn't know and I cut him off saying 'I know exactly who you mean'".

    (Geeze, am I that much of a pain in the butt that I leave a lasting impression?)

    I said, "Well I have instructions from the trial coordinator. She called this morning and told me that I need to get you to write a note saying you excised the mole with clear margins and it's benign, and write this on your Rx pad and sign it."

    He said, "I'll gladly write the note...after I get the pathology back."

    I said, "Noooooooo!!! I have to have it today!! The whole reason for the note is to circumvent having to wait for the pathology. If I get the note, I can start the extension phase next Monday!"

    Sensing my panic and wanting to avoid a scene right before a surgical procedure and perhaps catching wind from the nurse about my Elevated Anxiety Level, the doctor caved and said "I'll write the note."

    Whew! I was feeling better already.

    Then came out the tools of torture. Me thinks perhaps I should have strategized more about the opportune moment for ticking my doctor off, but now it was too late. Fortunately, the nurse had jabbed me in the back enough times with numbing agent already that all I felt were the tugs and jerks at my flesh.

    Then this buzzing noise started and I thought I smelled something foul, like burning human flesh. And I had an odd sensation the entire length of my body...kinda like, what's that feeling? Like being shocked?

    As if on cue, the doctor says "Do you have your hand on that plate?"

    I say "no, she never told me to put it there."

    "Well, put it there!"

    Then I felt (a.k.a. imagined) my arm cramping up, a buzzing sensation and my forearm tingling as if being electrocuted. I mentioned this.

    The doctor playfully said, "You're getting a little carried away. There's nothing at all in this room that will remotely hurt you in any way."

    I said, "I beg to differ as you cut, cauterize and sew my back, doc. The only reason it's not hurting now is because I've got a turkey baster full of Novocain crammed under my skin. I bet it hurts later!"

    He laughed. You really shouldn't try to make your doc laugh while he's sewing. I did request that he embroider my initials and he said he could do that. As many stitches as he used, he either honored my request or my incision is about 3 feet long. (Nice trick since I'm barely over 5 feet tall...I must be long waisted.)

    He got all done, I lived to tell the tale, and he wrote the note. He refused to say "benign" but instead wrote "not malignant". I didn't know there was a difference. I guess there's shades of gray in between or something but I always thought if a doctor told you "It's not malignant." and you said "Whew! Then it's benign?" that he would in turn say "That's correct." Who knew?

    I walked out of there with a backpack sized bandage on my back covering the area where once had been a cute little brown speck, and I did my best Frankenstein impersonation waddling out of there. I got a laundry list of care instructions and a script for Bactrim which is one of the very few antibiotics my body hasn't decided to grow hives or swell my tongue over.

    I got in the car and drove straight to carry my precious cargo, The Note, to my clinical trial coordinator. I felt like I had the Golden Ticket from Willy Wonka or something. It was my entry into the No Kidding This is IT part of the trial where I don't have to wonder, "Is it Fingolimod or is it Avonex? Only her hairdresser knows for sure."

    I'm just hoping the lack of the proper verbiage...where they were looking specifically for the word "benign" and it was hiding right there in plain sight in a "not malignant" costume wasn't going to poke holes in my bucket of pills. But, hey, if I didn't worry about that, I wouldn't be doing my job.

    I find out at the Research Department that they were trying to score me some more drugs to keep me from going into withdrawals and robbing a bank to get my next fix. They said Novartis was having to overnight them because the research medicine cabinet was empty of the particular poison I'd been ingesting.

    Depending on what all they included, I might be invited to come up as soon as this Wednesday to spend six hours getting my vitals checked hourly (a.k.a. the Extension Phase Randomization). Otherwise, it could be next Monday. But either way, I'm in the club...as long as Novartis understands -- and accepts -- not malignant as a good thing.

    I'm giddy with excitement and my back is hurting like someone used a post hole digger on it, but everything seems to be falling into the place I wanted it to.

    For all you well-wishing prayer sayers out there...THANK YOU! It really means a lot to me and while I'm not of the church-going organized religion type believer, I do believe, and I do have my communion with the Almighty on a regular basis. Yesterday he rode shotgun on the way to Jacksonville and I talked his ear off about how grateful I was for the way everything was seeming to work out.

    He didn't say much, he just smiled and nodded a lot, but I could tell he was happy I was happy.

    Wednesday, September 3, 2008

    The Plan

    I made a persistent pest of myself along the lines of a mosquito that buzzes in your ear but narrowly avoids the deadly swat each time. It paid off. I finally got to talk to a human. However exasperated with me she might have been, she was professional and didn't show it.

    I got my appointment for the flea-ectomy for this coming Monday. My social calendar (otherwise known as the noaa weather chart) shows I'll be free that day as Hanna should be bothering the nice people in New England by then while Ike will be fashionably late. Perfect!

    That will be September 8th. By my calculations, the 16th should come on or about 8 days from then. (I didn't mention I'm a mathematical geenyus, did I?) When I asked if the pathology would take a week, Tiffany said "Oh, no! It shouldn't take that long!" (famous last words).

    So now I wait. I think on Monday I will beg the doctor to throw his weight around and tell the lab "STAT!" Why can't I have House's team of doctors?? They do their own lab work and con and connive to get results from other tests within the 60 minute confines of the show. **sigh** I mean, my life's a soap opera anyhow...what with all these cliff hangers.

    I have a good feeling. I just hope I can maintain that good feeling after Sunday...when I take my last pill.

    Drama is my middle name



    Apparently.

    I've been waiting ever since a week ago this past Monday to find out the pathology on those 3 flea specks I had biopsied, and I finally get a call yesterday. It's the doctor's nurse calling to tell me that all 3 were "atypical dysplastic nevi" meaning they aren't cancerous but could someday evolve into cancerous moles.

    She then said that two of them were cut completely off while they didn't quite get all of the third one, and she wanted to schedule the "excision". I paused for a beat as I took it all in. Especially that last part because the word I heard was "exorcism". That'll make your head spin!

    Anyway, I ask her if "atypical dysplastic nevi" were benign creatures and she put me on hold to go ask the doctor. He speaks their language I guess because she came back saying they might someday have turned on me, but as they were, under the microscope, they had come in peace.

    So I call the clinical trial coordinator, all excited with my news, and she said she had the path report in her hands and was looking at it. She was confused because nowhere on it did she see the word "benign".

    She fired off an email and copy of the path report to Novartis to let their safety control guy take a look and decide if it's safe to let me enter the extension phase.

    I get a call this morning and as it now stands I have to have the excision done and have the path report come back saying they got it all and that there was no malignancy....all before September 16th.

    So here we go again! I have left a message on the dermatologist's head nurse's answering machine saying it's critical I get this cut off me and the path back A.S.A.P. so I can stay in the study and that I will go to any office (they have 5 and the doctors travel between them like nomads) and it can be any time (NOW preferably).

    The clock ticks, I sit and wait. I feel my very LIFE hangs in the balance here, or at least my quality thereof. I'm a Fingo Head and I'm not ashamed to admit it. It's my drug of choice and in 4 more short days I will be OUT of Fingolimod.

    From what I have heard and read, it's okay to go without Fingolimod for up to 7 days. If you go 8 days, however, you have to be closely monitored for adverse cardiac events as it will once again mess with your heart rate and/or blood pressure.

    Just the stress of all this being yanked around about a couple of skin specks has been enough of a test of my heart rate and blood pressure. I can't take much more.

    Oh, and there's 3 tropical storms headed this way and I will have to worry about driving around in them again. That little girl on the salt box sure got it right.