Did anybody catch the number of that bus??

Wow, I guess it's been awhile since I've had three days of IV steroids. While I WAS expecting some fatigue and a little depression, I was NOT expecting the twelve-car pileup that occurred in my body. Holy cannoli Batman!

Without getting dramatic and whatnot, let me sum it up like this:

Eighteen hours of sleep in a 24-hour period,

an unscheduled meeting between my face and the bathroom floor, and

a surprise visit from Mr. Hanky.

And the fun continues!

Got an email from my study coordinator with an updated schedule for the Fingolimod Trial:

Wanted to email you your revised schedule for study. It is as follows:
March 4 at 7:30am includes repeated testing, repeat MRI and labs (2 hours)
March 16 at 7:30 am study drug dosing, long day of observation, bring snacks, DVD’s or book to read (6-8 hours), will need driver
March 17 at 8 am study drug dosing, length of stay depends on your 1st day dosing response (2-6 hours)
March 30 at 11 am labs and vital signs (less than an hour)
April 14 at 9:30 am lung test at Piedmont at 9:30 then here for labs & EKG, then eye exam at 1:20

Now it IS a little foolish for me to add three new posts in one afternoon, but I just want to share how fast this stuff has been happening today. Pretty exciting, huh?

Dermatology update

Got a call from the derm's office with the results of the three moles that were removed on Monday. The lab reports that all three moles were completely clean with no atypical cell activity remaining.

Yay. Now I just need to stay quiet and relapse-free for a few more weeks then I start the study drug. Woo-hoo!!

Wags update

Wow, have I been remiss about talking about the Wagster and what's been going on.

So, he's got this whole Immune Mediated Hemolytic Anemia thing going on. The first line of defense is to suppress his immune system to prevent it from attacking his own red cells. Well, as anyone with an autoimmune disease and a pet knows, the best way to do that is with steroids, specifically oral Prednisone. Thirty milligrams, twice a day. That's a pretty significant dose if you ask me. But we have to start out aggressively.

Now I'm learning that my new favorite lab test is counting PCV. That is Packed Cell Volume or, how many cells are in a finite amount of blood. The normal range is in the mid- to high-40s. On January 15th, Wags' PCV was 22. On January 22nd it was almost 28. This morning it is 33. He's got nice pinkness returning to his tongue, gums and ears. His appetite is healthy (especially with the appetite bump that steroids always provide). He's drinking vast quantities of water, and urinating vast quantities out, as he should.

So, we wait, we closely monitor, blah, blah, blah. Oh, and cross our fingers.

Things are going well so far. I won't bore you with all of the things that might have caused this and all of the things that we're potentially wrecking with high-dose steroids. We just have to take it one thing at a time.

Maybe this time it'll work

You know, I was thinking last night - there isn't much else to do at 1:00 in the morning on a steroid high - and something occurred to me. I had that flare-up in October. At the time I was directed to receive a three-day course of IV Solumedrol. On Day One I developed a most severe allergic reaction and the drug was stopped immediately. My doc at the time was very much freaked out and refused to order me any more IVs of any kind; I was directed to take a week's worth of oral Prednisone; anyone who has had MS for any length of time knows that Prednisone really doesn't do much for sh** when it comes to getting one out of an exacerbation quickly and completely.

So, my thought? The flare-up in October never really completely healed. What happened to me last week was not a new flare; rather it was the old flare just reappearing.

Why does that matter? Well, I would rather have one long-lasting flare on my record versus two flares in three months. Maybe I'm paranoid, but I fear it could be the difference between retaining a relapsing-remitting diagnosis as opposed to a more progressive diagnosis. Drug studies love relapsing-remitting. There is darned near nothing going on in the progressive world.

Just a thought...

Fingolimod, dermatologist and steroids, oh my!

OK, so, if anyone even noticed, I last posted nearly a week ago because my hands have really been acting up and typing, eating and even dressing myself was a real challenge. Well, things just got worse and worse.

Now, I've been trying to start the Fingolimod Clinical Trial since October and haven't been on any DMDs since then. One of the screening tests is having a body check (moles) done by a derm. Did that the week of Christmas so I didn't anticipate getting any results until after the new year. On Monday, January 5th(?) I got a call telling me that the three moles that were scraped off tested positive for Moderate or Severe "Junctional Melanocytic Dysplasia." They have to be excised down to clean tissue before I can start study drug. That does not scare me, but it definitely pisses me off because my start date was pushed out to February 18th. Damn!

Have I lost you yet? I'm sorry, this is kind of long and might include some redundancies.

Anyhoo, since I'm not actually IN the study yet, I don't have all the super-secret contact phone numbers if I need to reach anyone over the weekend. But, I DO have email addresses, so I sent a note to the study nurse and her supervisor telling them what was going on with my twitchy, spastic hands, reminding them about my dermatology appt Monday morning and asked them to call me on my cell before my appt (8:00).

Well, the supervisor called me at 7:35, we talked and she told me to call her when I got out of the derms office. Did that about 8:55, she got me in front of a doctor shortly after 10:00 and I was hooked up to a Decadron IV before 11:30 (to be repeated into tomorrow).

Of course, this pushes back my trial date again, but I just have to stay event-free for the month of February which, hey, only has 28 days in it this year!

And I've got stitches in my arse!!

Congratulations! Now get to work..

Dear Mr. President,

Your swearing-in ceremony was breathtaking and the sheer power of this historical event brought tears to my eyes several times. Your daughters are beautiful, your wife is a class act, and you carried yourself in a most inspiring way. I look forward to our country returning to the proud and prosperous land I know it can be again.

Now, please enjoy the parties tonight, get some sleep and hit the ground running tomorrow. You have taken on a real mess, and I wish for you the strength and tenacity to make progress.

Sincerely,

Your loyal supporter

Immune Mediated Hemolytic Anemia

Oh boy. Wags went to get his teeth cleaned today and he had some preop bloodwork done which caused his vet some concern. It seems his blood was coagulating much too quickly, so more blood was sent off to a lab for four additional tests - to the tune of a $400+ bill.

While we wait for the labs to come back, the vet told me what he anticipated: Immune Mediated Hemolytic Anemia, which basically means his immune system is attacking his own red blood cells. I'm just a tad bit terrified.

Where did that wall come from and canine dental issues

So yesterday morning I woke up a little earlier than planned - I hate it when that happens - and the dogs naturally thought that meant it was time to get up and start the day. Two cups of coffee and an energy shot later, the wall came crashing down at about noon.

Now, there's tired and there's fatigued. Then a line is crossed and the best way to describe what happens next is coma. Cannot walk. Cannot eat. Eyes are open, but what I see is discombobulated. Have you ever felt like your brain was crooked? Seriously, like everything had sort of a right-leaning bent to it. The point of this story is, I hit the bed at noon, woke up for dinner at 7:00pm, then back to bed until about four o'clock this morning. Other than the fact that every joint in my body is stiff, all is again (up)right in my world.

Wags has lost more than three pounds! For all intents and purposes he is back to his old self, though. I sure would like to know what started all this nonsense in the first place!! Our last order of business is an appointment tomorrow for a teeth cleaning. Pup has nasty plaque and his mouth is probably not a fun place to be. I hope that clean teeth will make the poop he always likes to eat a lot less attractive. Blech!

Oh yeah, I received an email about the Fingolimod schedule from the study nurse. Even though she'd given me the information over the phone, I feel so much better having it in writing. Even with that, sometimes I wonder if this is really EVER going to happen!!

Fingolimod update and Wags is eating again

So, the study nurse called to tell me that my schedule had been revamped a bit because of the two moles I have to have removed.

My new schedule is:
Monday, January 26: Dermatologist removes the moles and sends them off to the lab for analysis.
Tuesday, January 27: Back to the study center where I have another MRI, and repeat the EDSS test, the (MSFC) test, the Low Contrast Letter Acuity Eye Exam and the Paced Auditory Serial Addition Test. Blech!

I am now scheduled to take my first dose on Wednesday, February 18th!

Just when the day couldn't get any better, Wags got a whole bowl of the 'Diamond Miracle Kibble' and snarfed it down without even pausing to breathe or belch or anything. Woo-hoo! I think my pup is coming back!

Clint Eastwood...

... is DA MAN!

Just saw his new flick, "Gran Torino."

It was a bit of a surprise, because in this movie he plays a crotchety old bigot.  While there were several opportunities for Clint to clench his teeth and threaten bad guys, that was not the main point of the story.  Rather, he learned to let go of prejudices and stand up for things he never before knew he believed in.

I can't talk much about it without giving too much away.  Just take my word for it.  It is worth the price of admission.  Go see this movie!

Diamond Miracle Kibble and I'm packing heat.

After turning his nose up at food for three days in a row, late last night - seriously, it was late - I caught Wags nibbling on the food that had been sitting in a bowl all day right next to him. It's not like he at the whole thing or anything, but he did eat about 10% of it.  On his own.  There was no nagging, begging or violence involved on my part.  Yay, huh?

Not quite.  But, Wags is obviously feeling better because he's spending a lot of time outside in the sun and not spending the whole day curled up in a ball in his crate.  On a whim, I asked my neighbor to donate a sandwich-bag amount of Diamond Lamb & Rice to the "getting Wags to eat something" cause.  Lo and behold, he took right to it and snarfed it down very nicely.  Since he's hardly eaten in the past few days, I fought off the temptation to give him three servings and just gave him the one meal.  I think he really liked it.  I guess I'm going to the feed store tomorrow.

On a completely different note, say hello to my little friend:

You may ask, "What in heaven's name is a person with MS doing with a handgun?" and that is a very valid question.  My boyfriend is a retired Army Ranger, lifelong member of the NRA and a Republican 'til the day he dies.  Absolutely not my type, but here I am.  Recently, a local girl - homebound and in a wheelchair - experienced a home invasion where the perpetrators beat her horribly.  I decided after that, it was NOT going to happen to me.  So, I started shooting more, renting all different kinds of weapons to find one that was not horribly expensive that I was comfortable handling.  And this is it.  A 9mm Springfield Arms XD-M.

Doggone it, Day Two

When I got up this morning I was greeted by a wet pile of poopy in the livingroom.  I'm sure it was Wags, having had an emergency overnight.  The poor pup.

It is just past 11:00am now and my Wagster won't eat and is just curled up in his crate. We did take him out for a short time and got him to go outside and pee, but then he just sat down in the garage and didn't want to do anything.  He is obviously still feeling puny and I think I'll let this go on for one more night.  If he's not improved by tomorrow morning, another trip to the vet is definitely in order.

There are not many things more pathetic than the face of a dog who doesn't feel good!

Doggone it!

So, I have these two dogs, right? Maggie and Wags.  They are hound mixes and really, really good pups.  Maggie is smart as a whip and is an excellent communicator.  Wags is probably smart, just much quieter about it (here's his picture - you decide).  He's more of a stoner. He does nothing fast - except eat - and is asleep more often than not.

Wags was kind of out of it all evening yesterday, and would not eat this morning. Wags never refuses food.  In fact, his nickname is Lumpy and is kept on a pretty strict, low-cal diet.  My honey and I, neither of us doggie experts, panicked, and got Wags to the veterinarian's office.  A physical exam and $107 later, we came home and Wags took a dump the size of a Hummer H3 in the back yard.  Then he ate breakfast and is snoring away in his favorite chair.

If they can play with breeding to the point where they can create a little freaky thing like this (left), why not the ability to form words?  That way, maybe Wags would have just said, "Hey!  Chill!  I'm just a little constipated, jeez!", and I would have saved a hundred bucks.

Wow, I HAVE been neglecting things, huh?

In our office space there is a cardboard Banker's Box in which I have been tossing things; between bills, Merrill Lynch statements, catalogs, MS publications and other miscellaneous crap I pull out of the mailbox every day, this box is overflowing. One of the few resolutions I made for 2009 is to organize that box and no longer toss things into it.

So, today I started that task.  I completed two steps today.  First, if it is obviously junk mail or any type of solicitation, it goes immediately into the trash.  This resulted in two brown grocery bags full of stuff being tossed away.

The second step was to open every envelope.  The things in envelopes are monthly statements for one thing or another that I know I have to file. Getting them out of their envelopes and stacking them in order resulted in one more grocery bag being tossed.

That really should not have worn me out, but it did.  Maybe the fact that it took about six hours to do those two tasks is the cause?  Anyway, at least I can say that the size of the crap in the box has been reduced by about 40%.

I have to go lie down now.

Looking Good!

While killing time during the wait for the NFC Wildcard game, I ran across some lame-ass monster/Nazi movie on the SciFi network.  Who do I see? I had SUCH a crush on this guy from the late 80's to the early 90's.  He still looks good to me!

Image: www.celebritynooz.com/.../joe-penny-now.jpg