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.


  1. Try the natural eye drops - not visene or anything like that. BIG DIFFERENCE!! They're usually called lubricating eye drops and they don't have any additives in them so they won't sting. Had to use them after Lasik and stuck with them! Good Luck!

  2. So happy to hear you are feeling great and that everything is going well.

    As far as the natural drops try these:

    I get them at Walgreen's

  3. Wow, fascinating. You poor science experiment you.

  4. hello there...was just curious to you know when fingolimod will be approved and out there for the general public?

  5. So slap me! You're not special...I've been ignoring EVERYONE's blog!!! (But I must say I HAVE missed yours the most...ahem)

    Still got the knack for making me pee a bit from giggles...

    Linda D. in Seattle

  6. @ merelyme: I was told something really vague. They said it all depends on how the trials go and what info they compile from the Phase III testing.

    It could be as early as the end of '09 or it could be another few years.

    I was, selfishly, happy to hear it could be another few years because since I have no insurance I need to get it for free as long as I can.

    @The Cheese: Good to see you out and about! Have to head on over to cheeseville and read up on your latest antics. I'm behind in my blogginess, too.


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