Friday, March 26, 2010

Elevated Liver Enzymes...

... were known to be a risk as far back as before I signed the original consent form.

Here's a screen shot of the scan I made of the original form:

The study nurse did tell me a while back that one person had to be taken off the meds due to elevated liver enzymes, but was subsequently restarted when they returned to within normal limits.

I'm just hoping I'm back to normal at the next blood draw.

{crossing fingers}

Down for the count

Two Sundays ago I was at my elder son's house and found that his roommate was coming down with a nasty case of "something". My son and his wife soon followed in her footsteps with everyone in the household --save my 7 year old granddaughter -- rolling around moaning about how terrible they felt in between trips to the bathroom for a chorus of dry heaves.

I decided to keep my granddaughter for a day or two to let everyone have time to revile in their own misery. And the first night we had her, she spiked a fever of 104. So much for saving her from the terrible case of "something."

That was last Tuesday. For the next 4 days I was playing nursemaid/quarantine guard to my granddaughter who so quietly laid in bed, never complaining, and barely moving about. I was trying hard not to catch whatever IT was and washed my hands until they were raw and cracked.

I ended up taking her to the doctor who looked down her throat with a black light/hand gun looking thing and pronounced "She's got strep!"

I'm not convinced of the accuracy of a tool left over from some hippy pot-smoking sixties era novelty shop, so I'm still skeptical that she had strep. We got antibiotics and after another 4 days she seemed better. She probably would have felt better by then anyhow.

So two days before she returned home, I awoke in the middle of the night to much stronger feelings of achiness than I felt should be normal for my nearly 50 body. By midday that day I was spiking my own fever.

I took Advil and laid in bed for an entire weekend while my elderly mother took over caring for my granddaughter. At least I felt she was probably past the contagious stage.

After my 3 days of misery, we finally got my granddaughter returned to her now-well parents, and everything was fine for the next 24 hours.

Then my son awoke on Wednesday saying he ached all over and he had a fever of 101.

Here we go again.

I took him to the doctor today because he still has the fever, but he decided to upgrade his illness and added on bathroom trips for explosions from both cannons if you know what I mean.

The trip to the doctor was mainly due to good old Murphy. He's got some stupid law that mandates a child who is slightly ill on Friday will become deathly ill before the doctor re-opens on Monday. However, this law can be overriden by actually seeing the doctor on Friday thus nullifying the death sentence and causing the mother to appear to hover like a helicopter.

Worked like a charm. The nurse had him blow his nose in a cup (ewwww!) and whatever they did to test it came back saying he has Influenza type A. Great. The bug now has a name.

It has to have been the same thing I had. I did feel nauseated and a little dizzy and very achy and had a fever that for all the world wanted to be 101, but never quite got there, always stopping at 100.8.

Which leads me to the conclusion that my immune system is in better condition than that of my 10 year old son's. I fought this bug off without hardly breaking a sweat and mostly in my sleep.

That's the good news.

Now, after all this, and walking around with a swelled head about how profoundly superior my immune system is from that of the average person, my liver has delivered me a possibly crushing blow...

I get a phone call from the trial coordinator and it's nowhere near my next scheduled appointment date. After swapping our viral stories about how our families have been ill, she got down to brass tacks.

It seems my blood work came back from my last appointment and my liver enzymes (which have never in 3 years been an issue in this study) were slightly elevated. EEEEEK!!

I have to come up for another blood draw next week and hope that the situation has resolved or at least plateaued. Otherwise who knows. She did say that at the current levels I'm not in any danger of having to get off the meds. But she's looking at my blood from a month ago. Who knows how much more *elevated* those little buggers could have gotten?!?

And here I have been worrying all along about losing the medicine due to no medical coverage once it gets approved. I may not last that long!

The only thing I can say that has changed since 6 months ago at my normal liver enzyme levels is my recent discovery of Jello Shooters.

I started making them for John to take to his weekly poker game and naturally I had to sample them to be sure they were fit to serve.

Well, one thing led to another and my friend Karen and I decided that Saturday would be our Jello Shooter making day so that they would be ready for John on Sunday. After all, sampling the recipes is more fun with a friend.

I'll be trusting everyone else's opinions from now on, just in case the combination of Fingolimod and Jello Shooters is what has my liver in an uproar. Sigh. It was fun while it lasted, but I'd rather be on Fingo than hopped up on Jello. The choice is a no-brainer, fortunately for me.

I'll be sure to post back when I find out the results. Not sure how long it takes, but it's been weeks since I had the blood draw they called me about today, so I'm guessing it'll be another several weeks.

Maybe between now and then I'll find something inspiring to blabber about on here...

Monday, March 8, 2010

A Modicum of Happiness

My day starts early. 5am to be exact. Some of you will say "that ain't early (if you have poor grammar)" and others will say "OMG I thought that was still considered the night before."

When we moved in with my elderly mom last summer I knew it would be like this since we moved 20 min. in the WRONG direction from my son's school which was already a 15 min. drive. PLUS, add on top of that the fact that he's now going to middle school and they begin their day even earlier than grade school and you have 2 very squinty-eyed yawning people every morning in this house.

But we have both figured out a way to approach this that I truly believe my MS taught me. The trick is to look for the good.

We each have a travel mug and mine's filled with decaf and his has hot cocoa.

The drive is long, true, but it's also beautiful. We start out walking down the wooden walkway that my boyfriend built last summer. It's like going to one of those nature parks where there is a deck-like path that winds around through the wilderness. The view from this walkway is spectacular and always sets the mood.

We get in and drive the winding road to town surrounded by alternating patches of housing developements, wild Florida woodland, and farmland where the locals grow corn, potatoes and cabbage.

We merge onto the 4 lanes of HWY 17 North and head into the small town of Palatka. (Prounounced like the sound of a tall cow crapping on a flat rock -- Puh LAT kuh).

We crest the Memorial Bridge over the St. Johns River where we never cease to be amazed at the beautiful sunrise surrounding us. Even on the rainy gray days, we still find reason to be in awe for on at least one occasion we were enveloped in a cloud atop the bridge (just fog really, but if my son wants to think it's a bona fide cloud he can).

And we aren't even half way there yet!

We drive along, sometimes singing, sometimes practicing our jokes on each other, always talking in character voices, and never ceasing to make each other laugh. He especially likes my Elmo impersonation and I really get a kick out of his ailing, grumpy old man he invented named Mr. Abernathy who loves oyster crackers, reminisces about the days when a dollar could buy you anything, and is constantly complaining about today's youth.

One time he made me laugh so hard I had to pull over to catch my breath and wipe the tears from my eyes. All the while, *Mr. Abernathy* kept complaining about how I was going to make him late for school, "goll durn it!"

Anyhow, we turn off of 17 and head out State Road 100 W. where it's so rural I have to make certain I have gas before the turn off because it's 15 more miles to the school without a gas station in site.

The road is lined the whole way on either side with stands of pine forest planted by Georgia-Pacific and other sections that have scrub oak, palmettos and other trees native to the area. You feel like your going "over the river and through the woods to Grandmother's house we go.."

There are power lines along one side of this road and the trees have been trimmed away to keep from touching them.

Now I don't know if it's just us, but I swear to you that whoever is trimming the trees learned how to do it working for Disney.

The first unusual tree we come to is the Dinosaur Tree which stands with a thin neck above the rest and hangs out over the road like T-Rex. Next comes the Elephant Tree complete with trunk that snakes first down then up in an S curve.

Last but not least is our favorite of all. The Turtle Tree. His head looms over the road with an open mouth grin sporting one tooth hanging down. In the distance beyond this tree is another sculpted growth that creates a "wing" on our turtle when everything lines up just right.

We know when we come to the Turtle Tree that we are very nearly there. We prepare to slow for the school zone and he starts zipping up his jacket and gathering his binder and other school supplies.

I bring my camera on these trips so I can take pictures if we have time and if I remember. For that reason, I have none to post yet.

It's an amazing ride that is always the same and yet always different. Sure, we could look at it as the ride that takes an hour round trip at a time of day when I'd rather be sleeping, but we both have learned to embrace it and look forward to it as our own personal time together. No computers, no chores, no rules really... just fun.

And only 35 minutes after it began, our morning ride is over and it's time to head back. We say our "I Love You"s and he begs me not to embarrass him (again) by yelling it out the window in my Elmo voice. And then he's gone.

I turn the car and head back the way I came, but the ride home sucks. I've seen everything already, there's nobody to talk to and the sun is in my eyes. Hey, I did entitle this "A MODICUM of Happiness".

The flip side of anything is never that great. Just look at all the 45's we never played the *other* side of.

My MS taught me to at least TRY and make the best of things. During this MS Awareness Month, tell me, what has your MS taught you?

Friday, March 5, 2010

My Eyes

Last time I posted was shortly after my last checkup where I had my eye exam and got a lot of visual side effects along with a headache I was told was a migraine.

A few days after this event I had to take my mom to see her eye doctor.

It seems every time we go to see him the conversation inevitably turns to my clinical trial. This visit was no different. When I saw him putting the dilation drops in my mother's eyes it made me blurt out right then and there:

"Hey doc, that reminds me... have you ever heard of someone getting a migraine caused by using those drops?"

To which he replied "It can happen, but it's not a common side effect. Why do you ask?"

I proceeded to tell him about how I got this centralized headache over my brow area and my eyesight got really blurry, light hurt my eyes, and anything bright was surrounded by a halo and had a "star filter" effect ( where all lights looked like star bursts).

His curiosity piqued, he rolled across the room toward me on his little round stool. Peering into my eyes, he brought his light in from the side and shone it into my vision starting from the peripheral edge.

He said he thought I should have been checked right then and there at my visit in question for having a Closed Angle Glaucoma Attack.

He said I had all the classic symptoms and that it would be more likely than a migraine especially since my *migraine* was on both sides of my head.

Being the hypochondriac that I am, I wouldn't have done my self-proclaimed title justice if I didn't worry myself into being totally convinced I was on the verge of going blind (<-- I had to edit that because I have a typo that said "blonde" heh an even SCARIER proposition).

Naturally, I went home and googled it to death.

He said there were tests that can be done right in the eye doctor's office and the cure for it is poking holes in your iris (the colors part) with a laser (eeek!). Like I want to be the freak with 3 pupils. But better I can see than not.

So I called my clinical trial coordinator and she was not concerned at all. She said my eye doctor for the trial would have checked for that (I thought the same thing) upon hearing of my headache. In fact, I told the doctor about the headache when she was looking into my eye with what looked for all the world to be one gargantuan eyeball of her own, but turned out later to be just a large magnifier (much to my relief).

The trial nurse said that this doctor was SOOOOOOOOOO good (everybody: "HOW GOOD WAS SHE??") she was so good that she actually caught early stages of glaucoma in ANOTHER trial patient (I could have sworn she meant this very SAME trial) and the patient didn't even exhibit any symptoms.

While this might seem a comforting fact to my clinical trial nurse, she obviously is NOT versed in the workings of a hypochondriac's mind. For I immediately jumped to the conclusion that Fingolimod must cause Glaucoma. Otherwise, if I had a suspicious episode AND another patient was actually diagnosed, it stands to reason it's the drug (in my mind, warped by hypochodria).

For now, I'm letting it slide. She said she'd run it by the doctor and see if she wanted to reevaluate me. I haven't gotten any return call asking me to drive up there, so a) she forgot to say anything or b) she didn't think it was necessary.

I go back for another eye exam in either 3 or 6 months and you can bet I will keep an EYE on the situation until then. Much as I plan on keeping ABREAST of the situation with the mammary cysts.

If anything new happens, I'll be sure to post it. I can't remember ever having quite that spectacular a change in my vision from dilation drops before, but I may have now worked myself up in to false memories of just how bad it really was. For one thing, I DID drive myself home so it's not like I could have been having that bad of a time, could I?

I know one thing I am sure of. I have a new reason for a panic attack at my next clinical trial checkup. I never would have guessed I'd be terrified of eye drops.