Wednesday, February 4, 2009

Just to clarify...

The last post about being "Ticked Off" about others getting compensation was incorrect. They aren't getting compensated but reimbursed for gas money. Money's money and I haven't gotten any tho.

But I do want all you money-getting FingoHeads to know that I'm not now, nor have I ever been, ticked at you guys!! How could I possibly be ticked at the inner circle of my MS circle of friends?? We've come too far and shared too much to do anything but sit around the bonfire of our syringes aflame and sing "Kumbaya".

It's big Pharma I'm ticked at. They know who they are, and they read this blog.

"Equal pay (i.e. gas reimbursement) for everyone, I say!! Have you no soul?" said in my best protest-leading, bra-burning voice. (oh wait, that was a whole 'nother thing.)

Tuesday, February 3, 2009

Ticked Off

I guess I need one of these things because I'm really ticked off.

I'm not a greedy person. Well, okay, when it comes to trail mix I don't like to share much, but I'm not the gold digger type.

Without going into a lot of detail (because the yahoo group is private and it would defeat the purpose of said group to blab all the private stuff here, on my public blog) it's really been an eye opener for us all to compare notes.

Seems quite a few trial participants are getting monetary reimbursement for their participation, while others of us are not.

Not only am I not getting paid, I'm not getting gas money and I have to drive 4 hours round trip. They didn't even bother to offer gas money the one time I had to return right after my last visit because they screwed up my blood draw and had to redo it.

Okay, okay, I'm trying to calm myself down by remembering the reason I'm in the study at all...

To further the advancement toward finding a cure, or at least finding an oral drug for all of MS kind.

And to sell you a bridge...

Okay, I admit, I'm in it to get the good stuff and get to my happy place where my symptoms are so mild I can go back to my perpetual state of denial.

But when I'm sitting here broke and hearing the discussion of payment for involvement, I'm starting to think maybe I can cough up a pair of cajones next time I'm in Jacksonville and squeak out a soft plea for compensatory privileges.

Not only am I not getting paid...neither are any of the places doing the testing on me, apparently, because I am "over 30 days past due" on my last eye exam, and I just got a bill for the excision of my mole that Novartis insisted was my "pound of flesh" to part with if I wanted to stay in the extension study.

One nice lady from the University of Florida's collection department called last week to discuss the bill. I told her, in my most exasperated tone, that they bill me EVERY TIME for the eye exam and I always remind them that I am a study patient and the Research Department is supposed to be billed.

I gave her the contact names, phone numbers and the study number. She thanked me and told me she was sorry and that they would straighten it out. I told her they always say that.

I also told her that I have enough legitimate reasons for bad credit without them trying to help send my credit score into the negative numbers. She did laugh.

I laughed too. It's either that or cry. It's all worth it when I pop that pill every morning and remember what I felt like a couple years ago. You can't put a price on feeling good...

unless they start charging me for the pills.

Monday, February 2, 2009

How about this?

Can't go wrong with a shot of my own pill bottle and some cropped in actual pills now can I?

No more frilly froo froo. I took the bows out of my hair and got down to brass tacks...or Fingolimod Pills ... or whatever.

I figured I couldn't find any design more fitting that an actual photo of the pills, unless I stuck one of me on the "& Me" side of the page, but that ain't gonna happen.

That last poll is over. Now vote on the new one. And be's 2 days after my birthday. (I'm milkin' it.)

Happy Ground Hog Day

I think they say he saw his shadow and judging from the NON-Florida like weather outside my back door (in N. FL I might add) I think that's probably true.

Try explaining to a 10-year-old kid with a 147 IQ why a bunch of grownups would gather to let a caged ground hog out long enough to torture him before a crowd by holding him up and trying to determine if he sees his own shadow.

He wanted to know if it was a scientific fact that, if the animal did indeed see it's shadow, would we then have 6 more weeks of winter based solely on that evidence?

It's hard to tell a 10-year-old (who so looks up to adults as those to which he should aspire to emulate) that the aforementioned adults are all idiots who carry on a stupid tradition that makes absolutely no sense. His faith in humankind is faltering. Welcome to reality. People do stupid stuff, I tell him.

Life lesson learned.

Ground Hog day follows my birthday (a much more important day in my humble opinion) by two days.

I have my birthday on that day all the special offers from the end of the previous year expire. (Offer good until January 31st.)

It was a day like any other. My son was sick but I had only discovered this after keeping my granddaughter overnight. So I spent Saturday morning making sure they didn't get near each other and much hand washing and cough covering ensued.

I sat here at the computer for part of the day, wasting time (as evidenced by the number of "meh" votes on the new look). Then, after a boring day of being 48, I ended it all with a grand finale. I got a major sore throat.

Technically it was Feb. 1st by then as I awoke in the middle of the night with the horrible affliction after also having spent the previous hours immediately prior to the discovery sleeping with my mouth open. Oh. My. GOD. It hurt so bad I thought it would just crack and bleed.

Spent Sunday taking Motrin and bathing my throat in Cepacol while lounging on the couch and occasionally tending to my sick son as well. Oooooo! I can't take all this excitement.

While laying on the couch, I spent a tiny bit of time reminiscing about birthdays past.

It was 10 years ago to the day on my b-day that I got the most horrible stomach flu I've ever had. High fever, dizzy, vomiting, the works. I remember crawling from the toilet to the bed and collapsing. I laid there promising God anything he wanted if he'd just make it go away.

A few days after that I started itching at the base of my skull. It was a deep down itch that couldn't be satiated by scratching on the surface. It drove me nuts and I tried everything to make it go away. Itch cream, ice packs....and a heating pad. Found out later that the heating pad was probably the worst idea, for the reason I was itching was because I was suffering my first MS attack.

Within a week of the itching, I awoke with numb feet. At first I tried to blow it off, thinking maybe it was just a pinched nerve or something.

Within another week I was numb up to my waist and every step I took felt like I was slogging through mud. I got an appointment with a neuro and was soon admitted to the hospital and undergoing all the terrible, scary testing that every MS patient is familiar with.

Let me tell you, that nerve conduction study (where they juck you with 2 needles and hook you up to a car battery) can be quite painful when performed by a novice nurse who has no clue and keeps cranking up the volume in an apparent effort to see the electricity lines around me like a cartoon character, while I flail and smoke comes out my ears.

Anyhow.... I was put on high dose steroids (IVSM) and sent home after 4 days with a diagnosis of Transverse Myelitis.

As we all know, MS, by definition, has to be "Multiple" so it would be another month before my second attack and my official MS diagnosis.

A decade of change. In some ways it's like nothing is any different and I'm still basically me. In other ways, I have changed dramatically since that 38th birthday.

The only birthday I had that was worse than that one was my 18th, 30 years ago. I went outside on my birthday and called my kitty, Sunshine, an orange tabby who was everything in the world to me.

She didn't come. I ventured out farther to see if I could find her and I did. Lying in the road, flattened by traffic.

I cried all day that day.

Most people say that the birthdays that end in "0" suck. I'm starting to believe the ones that end in "8" aren't so hot in my case.


Geeze! I just re-read all that and what a downer, eh? I'm really not as mournfully depressed as that made me out to be. How about I tell a joke to end this by putting a smile on your face?

It's one my son made up:

Q. Why did the one chicken goad the other into crossing the road?

A. He wanted to "egg" him on.

Give him a break already, would ya?? He's 10 for cryin' out loud. about this guy then?

Go have a great day and quit worrying about me and my stupid sucky birthday. :D