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:

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 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.