Saturday, August 18, 2007

Peg Test

Here's a picture of the peg test. When I went the second time I took the camera with me and asked if I could photograph it. She gave me such a weird look that I went ahead and took the pic but didn't have the nerve to ask about photographing anything else. Too bad because I wanted a picture of the boom box that the numbers test cd was played on. After all, the recorded guy beat me the first day.

One thing I noticed right off the bat but was too shy to point out is that the inside of the bowl is heavily textured with the jack-o-lantern face, and it hampers the testee's (that doesn't sound right) effort to pick up the pegs.

Seems like it's a handicap in the test that measures how handicapped one is.

Randomization Party

I wanted to get invitations printed up to send out and invite all my friends, but there just wasn't any time. Drat! So my sister is taking off from work to go hang out with me for 6 hours. I'm not sure if I will be confined to a room or able to freely roam the 10 floors of the two towers.

This is a picture of the building that I will be in. Actually, I'll be in the other tower that you can barely see (that connects to this one by the walkway on the 10th floor. I couldn't back up any farther to get more of the building in the shot and couldn't see the LED screen anyhow since the sun was shining on it. You get the idea.

I've probably spent more time in this left tower (tower 2) than in the other tower (tower 1) even tho all my appointments have been in tower 1. I keep thinking that tower 1 should be on the left and end up going to whatever floor the appointment is on, walking the hallway that makes a big square around the elevators which are centrally located in each tower, and then coming down to go up the other tower. I've actually parked the car with a half hour to spare and then was late for my appointment due to wandering the wrong tower.

After posting that Avonex shot video in my last entry, I've been hanging out at where MSers gather to commiserate and share knowledge and fears. I made mention of how terrified I was of that needle and another Avonex patient told me that she/he (I'm not sure which, sorry) is using the 1" needle. Hmmmm, didn't know there was a choice, but come Monday, when I arrive for randomization, you can bet that will be the first question out of my mouth!

So now that my worries over the size of the needle have subsided, I'm going to concentrate on what to pack the cooler with and which DVD's to bring.

I'm thinking comedies. You can't go wrong with comedy and it eases tension. I think that's why every time I am admitted to the hospital I end up being a one-woman stand up show that's laying down. They can't shut me up, but nobody's really trying to, they are laughing too hard. I did discover that it's best not to crack wise when someone's trying to find a vein tho. You don't want them twitching with the giggles.

So I'm taking Failure to Launch, Sisterhood of the Traveling Pants, and Holiday. I cheated and watched Failure to Launch today, but one nice thing about cognitive issues in MS is that by Monday I won't remember any of it and will be amused all over again. I made the choices for my viewing pleasure based solely on whether or not my boyfriend would pull his lip up in a sneer if I asked if we should rent it. If I thought it sounded good but knew he'd hate it, I got it. I don't have to share or be compromising this time. This day is for me. Even guinea pigs need preferential treatment once in a while.

Snacks... plenty of water. (Am I boring or what??) I love Zephyrhills singles, can't get enough. Maybe some V-8, a couple of ham sandwiches, a bag of strawberries and a whole bag of trail mix. I'll be set!

I am trying to think of it as a party for my sister and I to just hang out and spend time together... and watch movies and snack. I'm going to try to ignore the hospitalish setting and that funny sterile smell. I keep telling my sister that one of these days our day trip is going to be for something FUN! Like the mall... where we wander from shop to shop spending freely... now that's my kind of randomization!

Friday, August 17, 2007

Avonex Injection Video

Warning: This is NOT for the squeamish!!

I have been curious about the difference between SQ (subcutaneous, or under the skin) injections like the Copaxone I'm familiar with and the IM (in the muscle) shots like Avonex.

Since I'm going to be getting either the placebo shot, or the placebo pill, it makes no difference when it comes to the needle... I will still have to plunge it into one thigh or the other every week, whether it contains Avonex or sugar water.

So I went in search of a video. The Avonex website has a video that I'm sure is a sterile, watered down, easy to digest video that is designed not to freak out newbies. Unfortunately, I was lacking some important plug in to be able to view it, so I went searching somewhere else.

I found this one on and I'm almost wishing now that I hadn't. I should have just waited until Monday and enjoyed my blissful ignorance.

Wednesday, August 15, 2007

MS raises it's ugly head in some very helpful places

I just got a phone call from HRS (about my Medicaid). I can't begin to tell you how unusual this is and how surprised I was. The government has gone to automated service to the point that contacting an actual human to ask questions about your case is virtually impossible, so to get a phone call from someone at HRS was nothing short of a miracle. I expected the news to be that my benefits were denied (you can't expect good news from the government calling you!).

The lady on the other end of the phone said she was tracking my bills and wanted to make sure I knew that I can now have Walgreens fill the prescription for Copaxone because my bill had come across her desk and she jumped right on it.

She'd read the note I wrote basically begging whoever was in charge to track it a.s.a.p. because I'd already missed a week's worth of doses. When she asked how long I have had MS, I knew this was taking a more personal interest. What government worker even cares that you have an incurable disease at all much less wants to know how long you have suffered? When I said "Eight years." she replied, "I've had it for 14."

We commiserated like long lost buddies who both new the secret handshake. She had been on Avonex for several years so I picked her brain about side effects (without any good news I might add) and she picked mine about Fingolimod.

She ended up giving me her fax number and telling me from now on anything that needs to be tracked could be sent straight to her. Sometimes MS can do you favors like that.... not often, but I'll take what I can get.

Tuesday, August 14, 2007

MS and no medication = working without a net

I was sort of melancholy as I finished up today's tests... I am now done with that phase, I've passed them all and will start the trial next Monday. My date with "Randomization" is Aug. 20th at 8:30 a.m. I wish they wouldn't call it that. It sounds like they are going to turn me into a zombie from Dawn of the Dead or something. Like I'm going to randomly start walking around like Frankenstein after I get a dose of drugs.

I asked about my current meds and when to stop them. I have been on (and off) Copaxone for the past 8 years. I'm sort of going to miss stabbing myself daily with a needle. Yeah, right. I especially like the dance I have to do with Medicaid and Walgreens every month in order to get the medication approved and have Walgreens fill the Rx. I have Medically Needy with a Share of Cost. My share of cost is only $50. I was just FIFTY DOLLARS shy of being able to get full Medicaid. It was some case workers idea of a cruel joke. I have to show that I have spent the money on the medication in order for them to approve the medication, but they won't reimburse for money spent. Between the nice pharmacist as Walgreens and I, we came up with a solution. He prints out a cash receipt for the $2100.00 of medicine, then deletes the transaction from his computer. I take the receipt to HRS and turn it in for "tracking". They say "oh, you paid $2100.00 for medicine, so that more than covers the $50 we require you to spend. You can now have your medicine." Then I go back to Walgreens, they run the medicine through again and I get it. Medicaid only gets billed once.

Anyway, I asked the lady in charge of orchestrating all my testing when I should quit my meds. I told her I'd been off them for a week already because Medicaid was giving me a hard time and I had run out. I just got a call from Walgreens today saying it finally went through. She said "Don't do any MS meds before Monday." I tell her I have a month's supply waiting for me to pick up; what should I do with it? She says to keep it in the fridge and if I have trouble during the trial and have to get out, I'll have my meds waiting for me.

Why is it that everyone's so hell bent on considering that I may get out of this trial? Do they know something I don't? Do I exude "quitter" mentality? I just don't think it's the best thing for my attitude going into this thing to have every other sentence end with the clause "in case you drop out." So then we start talking about the possible side effects of the medications I may or may not be getting on Monday, since that would seem to be the deciding factor in whether or not I stay in or get out.

She says when I show up Monday, I will get the pill (probably no drum roll or anything exciting involved). Then I will get the shot. Now, I've been stabbing myself, like I said, for 8 years now, so I'm no stranger to needles. It's just that those needles have been itty bitty small, under the skin needles. This needle is going under the skin, alright, but it's also going deep into my muscle so it's much longer. Kind of like a spear (the way I'm envisioning it, anyhow).

I know I will eventually get used to this needle, too, but it's like starting all over again. I remember the very first time I ever injected myself. It was in the top of the right thigh. I had to sit there squeezing a pinch of fat with one hand while I made practice motions over and over again in a swing of the needle hand toward the thigh. It seemed like I'd never work up the courage. All the while I'm replaying the instructions of the nurse who had come to my home the previous day to give me a lesson in shots. He said "in nursing school we practiced with an orange, stabbing the needle into it. It'll be just like that." So I'm figuring even though I didn't have the dimpled orange-peely skin, perhaps my body is thicker than I had imagined and I will have to give it some real "umph" to get the needle in there.

When the moment came and I got the courage to actually pierce my skin with the needle, it went in like I was made of butter, not orange peel. I buried that needle to the hilt so quickly it shocked me and my first reaction upon seeing it was to get that thing the heck out of me! I yanked it back out purely by reaction only and ended up having to stab myself all over again.

So I'm back to that level of anxiety with a brand new med that I've not heard the best opinions of. Avonex is an interferon and can have some nasty side effects like muscle cramps, fever, chills and general flu-like symptoms. I'm not looking forward to any of that.

On the other hand, if I get the Fingolimod (which I'm really hoping for) then I still have to stab myself with the huge needle anyway. The fear of the needle isn't going to be something I can skate around. D-Day is coming and I'm going to have to get used to pushing that honking big horse needle into my leg regardless of whether the syringe contains Avonex or sugar water. At least it's only once a week. Once I have gotten over the shock and repulsion of having to do it the first time it will be time to do it again, only I will have the added advantage of forgetting any pointers I have learned because it's been a whole week since I did it last.

My new fear du jour is that I will relapse while I am off medications. I'm working without a net here. I didn't realize that this particular fear had used my mouth to exit my head and find my trial coordinator's ear. She said it was all in my head. She said they'd done so many tests on me and none of them showed any signs of impending relapse. Whew!

I'll probably take a break and pretend that, for the next six days, I don't have MS at all. I'm laying on the beach listening to the surf -- if only in my mind. I have a feeling the next 6 days are going to go by way too fast.

Monday, August 13, 2007

No Do Overs in Cognitive Testing

The crack of dawn comes waaaaaay to early. I found this out when my alarm (which has been silent since the last day of elementary school before summer vacation) began blaring in my ear at 5:30 a.m. The drive there was not as bad as I had feared. :-)

Today was my EDSS (Expanded Disability Status Scale) testing along with MSFC (Multiple Sclerosis Functional Composite). There seems to be a lot of acronyms involved in clinical research or maybe that's all part of the emphasis on secrecy about what they are doing in the same way that making it "double blind" is supposed to keep us guessing.

The MSFC test was quite interesting. The lady who administered it explained everything beforehand to me. There are three parts and they are each designed to measure one of three different aspects of how MS affects a person. They are: leg function/ambulation, arm/hand function, and cognitive function. To measure leg function, I was taken to a hallway and told to walk as fast as I can from a marked point to a doorway down the hall. She used a stopwatch to time me. Then I repeated the effort from the doorway back to the starting point. That was the easy test.

The next test was the arm/hand function test. It sounded simple. A pegboard with 9 holes was placed in front of me with a bowl in front of the pegboard containing the pegs (sort of in the "salad bowl" position if the pegboard had been a dinner plate). She timed me first placing all the pegs in the holes one at a time and then immediately removing them back to the bowl with my left hand, then right, then left again. I think I got a little slower by the second go round with the left hand. It was harder than it sounded.

The last test was the most difficult. Of course it was a measure of cognitive function, so of course I would find that hard. (haha) It was a CD recording of a man saying "your first number will be said in 5 seconds", and then the same guy says a random number from 1 through 9, waits a few seconds and says another 1-9 number. The objective is for me to add those 2 numbers in my head and say the result. The first 2 numbers were easy... 1 and 4. "5!" I say, all proud of myself (this stuff is easier than I thought!). Then you have to remember the 4 (not the 5 that I said) and add it to the next number the guy says and so on.

They let you have 2 practice runs to get the hang of it. We went through the first practice and I didn't miss a single one. The test giver's jaw dropped. She said "Wow! you did excellent! What do you say we skip the other practice and go right to the test?" I just shrug. Piece of cake. The first three numbers were a breeze and I was getting all cocky. Then something happened and I paid too much attention to myself saying an answer. I got confused and added the guy's next number to my answer and realized my mistake. By then he'd spouted out three more numbers and would not shut up. Then it was like he was the cocky one and he kept on giving me 7's and 9's like he knew they were my Achilles heels. I could almost hear his "muahahahahahaha" evil laughter between numbers. I froze and wanted to shout "DO OVER!" but I was warned in advance that the test would go on whether or not my brain cooperated. Doh!

After that embarrassment was complete, I was left alone to contemplate the wallpaper and the floor tiles until a neurologist came to give me the EDSS test. Fortunately, this test didn't test much cognitive stuff and the guy hadn't witnessed my humiliation by the recorded voice, so I was able to pull myself together and at least act halfway intelligent.

This test involves the usual neurological stuff where they whap you on the knee with the little hammer and stuff like that. Neurologists that specialize in MS know to stay far to the side when whapping the knees of someone with MS. My foot flies out with lightning speed right to groin level if you so much as stroke my kneecap with a feather.

There was the sobriety walk (honest occifer, I only had tee martoonies!), the finger to nose touching, and various other odd tests all designed to tell the neurologist what parts of my brain and spine have been damaged by the lesions that MS has eaten through my protective myelin covering.

There were some things he had to ask me because he couldn't witness them. One question was "Can you walk a quarter mile?" I just laughed at him. Not taking incredulous laughter for an answer, he expounded on the question in case I didn't comprehend: "Say, if you went to Disney World and had to park far across the lot, could you walk to the gate unassisted, or would you need to take the tram?" My answer: "If I used all my willpower to force myself to believe it was a life and death matter that I make the march unassisted for a quarter mile across the sweltering hot parking lot in order to save my child from a burning vehicle, then yes. I could do it. Other than that, if I was just going to enjoy Disney, there's no way I could walk a quarter mile and not have to find somewhere to soak my legs in a whirlpool and take a nap immediately afterward. There would be little point in going inside the gates."

After the neurologist got done whapping me with a hammer and tickling me with a buzzing tuning fork, the next experience was to be hooked up to the Holter monitor. I was scrubbed at various locations on my chest and stomach with alcohol and what felt like 100 grit sand paper. "It's to make the connections work better," she said. Then the sticky pads with imbedded snaps went on. Then the wires snapped to the snaps and hooked up to a little box. I felt like a carburetor. I asked her if they would be able to see how stressed out I was driving solo in Jacksonville traffic by looking at the Holter monitor readings. She laughed and said "probably."

All in all it wasn't a bad day of testing, as days of testing go. I'm beginning to feel like a test connoisseur since I've had so many of them. Tomorrow I go back and do both the EDSS and MSFC tests over again. Today's tests only allow me entrance into the trial and tomorrow's are the baseline. Really... is it necessary?? I'm practicing for the next battle with the recorded numbers guy. He's not getting the better of me tomorrow!

Sunday, August 12, 2007

Overcoming my fear of driving

If nothing else, joining this clinical trial has helped me already in that I have been forced to confront my fear of driving. I don't mean I have a panic attack if I just get behind the wheel and go grocery shopping. I'm not that bad. But after living in a small town for 20+ years and seldom having to venture out of the county, driving on I-95 can be anxiety-provoking.

The Comprehensive MS Center in Jacksonville, FL just so happens to be located on the north side of town just past the intersection of several various highways and streets that overlap in what resembles a huge pile of spaghetti. I love spaghetti, but I prefer it on my plate and not under my wheels.

I have been enlisting the aid of several more daring, less phobic family members to act as chauffeurs so that I can avoid having to face this fear of fast cars all around me. So far it's been working well even though while riding with my 25 year old son I have had to shield my eyes and grab the "oh crap!" handle several times.

He's a lead foot and drives like it's a race that he's hell-bent on winning. When asked why he wasn't using the cruise control (hint hint) his reply was "I am. It's set for 80." He likes to face life head on and doesn't suffer the "what if" mentality that has paralyzed his mother for so long. When riding with him the trip takes 45 minutes going the no-nonsense direct route of I-95 straight there.

The other family member who drives me is my sister. She's like me only the milder version. She doesn't like traffic either but doesn't let the thought of it send her running for the Xanax. We take US 17 to the hospital on a more pleasant 1.5 hr. version of the trip. That route is not without it's panic-provoking moments, however, as there are several turns to make that move you in a sidewinder-like motion to get to the hospital. We've had to turn around in parking lots more than once to get headed in the direction in which we should have been going.

One time, riding with my sister, we were coming back from the hospital and missed a turn somewhere. The four lane road we were on became two lane, then nearly one lane and then looked for all the world to change into a one way hiking trail into the wild. Four eyes between us and still we missed that crucial turn. Back up, back up... we got back to civilization and (because we weren't men) stopped and asked for directions.

So, I am very comfortable going on all these trips that have each become a mini adventure all its own. Now comes the moment of truth. Just how comfortable am I? Tomorrow, in order to get to the MS center for my first half of the EDSS test and to be fitted with the Holter monitor, I will be driving myself.

I'm not taking the direct, 45 min. trip and going up I-95. I have enough gray hair, thank you. No, I'm going to attempt the death-defying feat of driving up US 17 totally unassisted and without a net. Cue drum roll please.

I really think it's going to be good for me. Repeated exposure to face your fears is how therapists help you overcome them, after all. I'm just hoping the Holter monitor can take the beating.