Monday, May 19, 2008

This is only a test...


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

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

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

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

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

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

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

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

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

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

My mistake.

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

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

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


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

We now return you to your regularly scheduled program.

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

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


  1. You are so funny, Jeri, lol. I really enjoyed reading that! I look forward to reading the update on Friday's appointment :-)

  2. Well crap! I hate it when that happens and you do NOT (unfortunately for me) have the entire edge on the market of appointment forgetfulness/misinterpretation! I once got all prepared for a colonoscopy (I KID YOU NOT!)...drank that horrid stuff, etc., and stopped eating, only to discover I was a day early! WOOT?!?! Ah, and no...they would NOT fit me in a day ahead of schedule, in spite of my spic and span bowel! Sigh...

    Here's to a wonderful appointment on the 22nd...or is it the 23rd?!? (hehe)

    Linda D. in Seattle

  3. With all the appointments we have, it's not surprising that this does happen ... it's odd that it does not happen more often!

  4. I SO wish I would have done your check list! I left for my very last (visit 10) appointment and left all my boxed injections at home! Doh! I'll be bringing them in when I go back for the extention trial, so I don't have to waste a trip beack in. Phew! Visit 9 was not even a 2 hour appointment if I remember correctly too! Oh, and get this... they didn't even dialate my eyes yesterday! I was stunned. I have no idea why. They were able to do all the tests regardless of no dialation!

  5. Ah, that's pretty aggravating, huh? Embarrassing, too. I feel for you. I hope the Friday return is all good.


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