Day 5: Alls well that ends well....well I still got MS

Free at last! Free at last! Thank God Almighty we are free at last! (I realize that this might be offensive to some, I assure you I have the utmost respect for the Rev. Dr. Martin Luther King Jr. It just so happens his words ring true for a MS laden skinny, white, bald kid from Reading, PA. If he didn't want to be quoted he shouldn't have said such profound things.) IVIG is nothing to mess with, but it hasn't been so bad. As a matter of fact it's been pretty tolerable. The worst thing honestly has been the time that it takes out of my day. 5, 6 hours is a big chunk, and today it becomes a bit more complicated as I have to work. So my day started with my boys at 6:30am (not so bad when you have 11 month old twin boys. In the grand scheme of things this really isn't a complaint.) I got washed up, and made it to the infusion center just before 9am. I was a little late. I hate being late, it is one of those many pet peeves I have. If someone asks you to be at a place at a certain time I feel you should be there. I am not sure where or how this became a trait of mine. There is no one in my family who is particularly punctual, nor can I cite any sort of instance ( moving out of the way of falling piano, horrible car crash a moment after I pulled away etc.) that my life changed because I was late or on time. I just developed this behavior myself, what deep seeded neurosis preceded this is anybodies guess. That being said, I think the nurses were appreciative. They had 6 other people who show for an 8:30am appointment and to get them all settled and medicated at the same time can be a tall order. So in actuality I did them a favor. I maybe only one bald skinny guy, but I think the lull of at least one person is a breath of fresh air. See, this is the kind of guy I am. I look upon the hardships of others and try to make it better, try to lighten their load. I am a good person....Sorry lost it there for a second, what was I saying?

Right.

They got me hooked up by 9:30am and let the bag a flow. My buddy Joe was there again, Nina popped in a bit later, but the real interesting thing was there was a young girl and her mother there. Sadly the girl, who looked about 12 or so, was the one hooked up to the IV. The mother was cordial, but wasn't offering up any info on her daughter. I certainly was not brazen enough to ask, so I did what any polite, red blooded, American, male would do. I waited till she left and lead the nurses on a series of ambiguous questions in order to obtain the info that I sought. Turns out the young lass was on a drip of Tysabri, however she did not have MS. She had some other sort of condition, if I picked up my clues right, like Diverticulitis. Equally as horrible, however, I believe it is a very treatable condition. Don't quote me on that I am just pulling it out of my lesion laden brain. Getting more to the point, the reason I was so interested, besides the fact that I am just a nosy bastard who likes to stick his bald head into every last GDed thing, is that I assumed she had pediatric MS. This is a condition that is only now getting some press and being diagnosed.
I have long wondered about my MS and when it actually started. I have been wrought with mysterious ailments since the time I was a boy. These problems would often disappear, generally just in time for a doctors appointment. This is when I started to hear the phrase that pays, "It's all in your head. Just relax and you will be fine." I knew I wasn't fine, I knew there was a larger problem. (an aside here: If you ask any of my loved ones or friends, particularly my friends, most of them will tell you that I was(am) not fine. However most of these people are not citing any health problems but a slew of other unpredictable things that would either come flying out of my mouth or some sort of barroom antics that generally left mouths agape. Those were fun days.) I realize there is no way of going back to pin point when these things began. I also realize that there is nothing we can do if we are to find out that I have had MS since I was a kid. I do know that I had symptoms long before I was diagnosed. I have very distinct memories of someone pouring warm water down my back when I turned my head a certain way. I can go back as far as 2000 with this feeling. I have had problems with my bladder while in college. Let me just tell you its a tough conversation when all your boys are hanging out in your dorm room and you come in sorta perplexed from the bathroom. "What happens when you can't pee?" "Dude, seriously, were trying to watch X-files." (I know it's a dated reference....eat it would ya?) So just how far back does it go? Just till my late teens, which is when I started with Cluster headaches, or does it go back farther? I have had swallowing issues for as long as I can remember. It is my suspicion that MS has been present for longer than I care to think about. I had a neurologist way back, when I began having headaches. They did MRIs, always finding nothing. However, I think that this guy was an idiot. I should have known better seeing how I had to bring up the use of Imitrex, and try to convince him the codeine he was prescribing me was only making my headaches worse. This doctor was obviously of the school, "It's all in your head. Just relax and you will be fine." I suppose it would behoove me to get a copy of that file and have a medical professional look it over. Who knows what is lurking about that this Wonder Nuts might have missed. Sorry I got off point. So 6 hours later I get all the bandages taken off, which is the sweetest relief, I am sure you are all aware of the ungodly itching that such bandage glue will produce, the IV pulled out of my arm, and after a few thank yous/see you agains, I am on the road. A quick stop at home to change into my "straight” close, kiss the wife and children, you have to do that....Then back into the Yaris to give it the old college try on my drive to work. Now, I haven't talked much about my work. I have a post that will discuss it in further detail later, but my commute is just over an hour. It gives me time to think, listen to music, get pulled over by cops. Oh yeah, I got pulled over today. I knew it the second I buzzed by him. I'm no speed demon, but sometimes it gets away from you and this happened to be one of those times. I quickly took my foot off the gas, but it was to late, I saw him pulling out. So I got out of the passing lane and slowed down and awaited the inevitable. The inevitable came. The cop was actually real nice about it. I had all my info ready for him, he asked me where I was going, etc. He told me to sit tight and disappeared back into his car. I sat cursing myself and wishing I had just stayed at home. Whatever the ticket was going to cost certainly wasn't in the budget. I felt like a jerk. So options began to run through my bald head. What if I took off and made a run for it, once I got into work I can yell sanctuary and he couldn't touch me. No...I don't work in a church. I could try something with orphaned children. Ehh...the Yaris is too small for kids, besides he would give me another ticket for no car seats. I know MS. I got MS, this disease has got to be good for something, right? I could show him the band-aid from where the IV was, that'll get 'em. I'll try to walk a straight line for, that'll show 'em. Just them a knock on the window, and as I am about to launch into my most pitiful story, he smiles and hands me a warning and tells me to slow down, have a good day. Whew....I'll bet he smelled the MS on me. I'm here at work now. (yeah, I'm blogging at work. How you like me now?) I actually have a few things to do, so I can't be talking to you people all night. So, thanks for reading about my IVIG this week. I'll let you know if there are any results. Actually right now I am noticing that I feel a bit stiff. I am hoping this goes by the way side. I am sure it will, it seems to be par for the course with this stuff. Today I just didn't get to sleep it off. Seriously though, thanks for reading.

Day 4: Leave the Drama behind

Okay so it turns out I was just being dramatic. Big surprise. So here's the deal, there are side effects to IVIG. They are flu like and they are cumulative. So the reason I felt run down and fluish is because I was run down and fluish. The nurse today looked at me like I was a few antibodies short of a full immune system when I told her that everyone had said there were no side effects. She let me know that maybe the first day or so, but after it gets into your system there can be some ramifications. After all you are inundating your system with a bunch of foreign invaders, it only stands to reason that there is gonna be some sorta backlash. Hmmm....anyway, The aseptic meningitis is a possibility, however it is a remote one. Leave it me to be a reactionary.

So day four has come and gone. I decided to not be so antisocial today and sat in the "common" room. It was a large room with 6 IV stations, and a common TV. Through out the 6 hours most of the seats were filled, I was by far the youngest person there. Everyone was real pleasant, and all but one had full function. So I guess that's a bit reassuring. The only real downside of sitting in the common room was that I didn't sleep and while I didn't sleep my new buddy Joe enjoyed an episode of Jerry Springer.

I haven't seen Jerry Springer in quite a few years and let me just tell you that the show does not age very well. There were midgets (little people, which ever), badly tattooed brothers fresh from prison throwing punches over the women they say they both love, strippers dancing at the "pole" that just happened to be there, and wait for it wait for it......Sheep. Yep, dudes who like sheep was one of the topics. What more needs to be said? In a time of foreign war, economic crisis, heightened tensions with Russia, of course the American people need a guy who likes sheep on day time television. It's one of those things that lets us know that no matter how bad, how ugly times get at least their is a dude who likes sheep. I suppose it makes one wonder....can't we all just get along?

But I digress. Besides the minor side effects and the length of time I need to sit, the IVIG, isn't so bad. Far more stomachable than the Avonex. I had a hell of time with Avonex, they kept telling me the side effects would subside and 6 months later I was still a mess for a few days a week. I had to move on. I don't want to cast any dispersions on Avonex. I know that it works very well for a lot of people, I unfortunately was not one of them.

Anyway, IVIG, the greatest side effect I am coming across is the cost. As the very friendly nurse told me, "that's liquid gold we're draining into your arm." This was of course after the 9 attempts at finding a vein, but I'm not bitter. $5,000.00 per bag of IVIG. If you are doing the math that would be $25,000.00 just for the medicine this week. This of course doesn't include all the other fees that will undoubtedly arise. They tell me it may cost up $100.00.00 for five days of treatment. Seriously. In the immortal word of Bono, "The rich stay healthy and the sick stay poor."

Now most people look or think that I am nuts with such thoughts, "What are you worried about the insurance will take care of it." I hear ringing in my ears. Oddly enough I don't trust insurance companies. They are an industry to make money, helping people is a side effect. So, I started my job only 6 months ago, I only started on their insurance 3 months ago. This is the first time I am really taking it out for a ride. In the immortal words of Quint from the film Jaws,"Wait till the taxidermy man see what I brung him!" He of course goes on to get eaten by the shark. I do not want to get eaten by the shark.

On to the last day tomorrow and onto the future.

Day 3

I'm super beat again today. I actually just got up from a nap. This makes me a bit worried. Now I could just be being a reactionary here, and I sure I am, but after looking into the symptoms of that aseptic meningitis thing the nurses keep warning me about a bald guy starts to wonder. Actually a bald guy starts to get worried. I'm super super beat, have a slight headache, and am hoping that I am chilly just because it is a bit chilly outside. I'm just being a reactionary right? right? I told you that the internet can be the greatest resource for hypochondriacs, and hopefully I am being a hypochondriac here. I'll keep you updated. Cross your fingers. I am just being dramatic...I hope.

Day 2: no oats, maybe some pretzles

Day Two: pretty much the same thing. Although the boys decided today was a good day to sleep in a bit, and besides a little blip at 4:30am they slept through till I woke up at 7:30am. Now, your infant sons sleeping all through the night is generally a welcomed thing, I was really counting on their normal 6am chow call. Making the fact that I opened my eyes at 7:30am a bit of a problem seeing how it was my planned departure time. I guess I should stop using my children as an alarm clock. They are nowhere near as reliable as I hoped. Besides the clock I have is digital, my kids are not digital.
So I jumped out of bed and ran to the bathroom. Well, in a perfect world this is what I would have done. In reality it was more of a quick hop onto my feet and as I lifted my leg to make for the bathroom I realized that my left leg was not ready to hold all my weight. I mean, why would it? Who am I to expect such a thing? After all my leg was tired too, it had just been in a nice cozy warm bed and I am supposing that it wanted to stay there just as much as I did. Alas I had to be the one in charge and get ALL of my body parts to be moving. You see this doesn't work so well if only a handful of you want to function at the same time. I find the best results occur when we all work as a team to accomplish the task at hand. So I placed my hand on the wall, "See," I said in a pseudo mocking tone,"left hand is working pretty well, at least he's giving it the old college try." I think being compared to the left hand might have done the trick, I mean the left leg is no dummy and he realizes that the left hand is vilified in many cultures. It wasn't long after that, that left leg began to cooperate and we were all able to make it to the bathroom. A quick wash up, toothbrush, etc (I mean you gotta smell half way decent) and low and behold I hear my boy Emmet up and at 'em. Your about 45 minutes to late kid, but I'm glad you got a good nights rest. Then down the stairs to kiss the kids, the wife, and out to my trusty steed Toyota Yaris to take me to the infusion center.

Once at the center it was pretty par for the course. I was in a different room this time, but it was pretty comparable to yesterdays. This one didn't have as much indoor/outdoor carpeting but the chair actually seemed a bit more comfortable.
The other friendly nurse came in flushed my line, luckily all was in good shape. Apparently there was a bit of apprehension after yesterdays fiasco of trying to find a vein. Both very friendly nurses were relieved. I suppose so was I.

They hooked me up by 9:40am. I asked about the lag in time from my entry to the actual IV beginning and the very friendly nurse explained to me that they actually have to mix the solution when I get there, today some of the solution wasn't dissolving as quick as they would like. I figured it was a good enough explanation. I got comfortable in my chair and they gave the prerequisite medications that some how I was never told I needed to take. Something I forgot to mention yesterday was that they have you take some Tylenol and Benadryl before they start you off. There are a few side effects that everyone else forgot to mention to me the 12 times I asked about them like a rash, headache, or aseptic meningitis. Yeah they seemed real concerned about the meningitis. Although somehow I don't think either the Benadryl or the Tylenol are going to really stave that one off.

So they started to drain the bag into my arm while I deftly killed today's Philly Inquirer crossword puzzle in like 20 minutes. This turned out to be a good thing, seeing how as I picked up the Metro and started their puzzle my brain began to malfunction a bit. I just couldn't concentrate on it. I mentioned my lack of concentration to the very friendly nurse and she pointed out that the Benadryl may have begun to kick in. I like that answer as opposed to the alternative (and obvious) that I just didn't have the intellect to conquer that puzzle. I'll have to revisit it later. I can't let that bastard puzzle get the best of me. I can hear it laughing at me from here.

This room, like the other, had a TV and also like the other room was connected to Direct TV. I have cable at home, and for whatever reason this Direct TV thing has always confounded me, channels that start in the 200's, lists all kind of great shows that are unavailable to me. Makes no sense. Yet I seemed to get the hang of it and yesterday as I am going through the guide to see what I want to watch I come across information sweeter than free money (well maybe not that sweet, but pretty sweet) Twin Peaks will be on at 1pm. Twin Peaks? On TV in the new millennium? Finally a clear answer to all of this, this is why I have been given MS, to lead me here, at this time, to receiving a treatment that would present me with this channel lineup, so I was able to watch the greatest television program since the Twilight Zone. Well my day was planned, a few crossword puzzles, a quick nap, and then onto the Chill channel to watch the great Dale Cooper lead the cast of quirky charters through the unsolved murder of the towns head cheerleader with the double life, Laura Palmer.
1pm rolls around and I hit the button for the Chill channel, I am sure you see where this is going, channel unavailable. Unavailable? How rude is this? Not only have you given me an incurable disease you pull this crap on me? Wow, this really takes some stones, if you weren't omnipotent I think I'd ask you step outside, but seeing how you are omnipotent I'm not sure where outside would be for you or where you would stand.
With my dreams crushed I talked with both very friendly nurses for a bit, took a look at a crossword puzzle, and by 2pm it was time to go home. Day 2 finished.
So in the immortal words of Spec. Agnt. Dale Cooper: Gentlemen, when two separate events occur simultaneously, pertaining to the same object of inquiry, we must always pay strict attention.

Phase one: In which Doris gets her oats...or her IVIG

I'm beat. I'm gonna try to keep this short, the key word here is try. It doesn't seem that economy of words is my strong suit. Sorry.



Anyway, its been a long day. I didn't get home from work the night before until 1:30am. I had to unwind a little so I didn't hit the sheet till 2:10am. Then I had to be up and at 'em at 7am. (And I'm surprised I'm having a relapse....) I got to the infusion center just at 8:30am and they showed me back to my room. Take a look, it was actually pretty comfortable.


That chair is huge, I am a small guy, you could of fit three of me on it. So, the nurse comes in and she is beyond pleasant. She set me at ease very quickly. I don't know if I looked nervous, but I was....a bit. Not about the needles or anything, but they were about to pump me full of God knows what and who knows what my body was going to do with it. So she walks out and grabs my chart and sees my name and says, "Are you related to Beverly?" I thought on it for a second, the name Beverly didn't ring any bells. When suddenly it dawned on me that my Aunt Faye's first name is Beverly. She, for whatever reason, hates it and goes by her middle name. So it caught me by surprise that someone would call her that. However it still struck me as odd that my nurse might know her. We were pretty far away from where she and my Uncle live, and besides that she has been incapacitated by ALS for the last six years. I tell my friendly nurse this and she confirms that it is in fact my aunt she is talking about seeing how she worked at the hospital that my aunt sought treatment at. The world gets smaller everyday.
This, to me, was kismet. For whatever reason God, fate, or dumb luck had brought me here, under the care of this woman, and I knew I was gonna be alright. I have always had a great respect and love for my Aunt and Uncle and the fact that they were brought up out of the blue, destroyed any sense of nervousness that I had.

Well, now is where things get interesting, and my friendly nurse is glad that she knew my Aunt. Apparently the course of Salumedrol that I recently took has the tendency to make your veins a little less veiny. My friendly nurse had a little trouble sticking me. She was able to get under the skin, but then the vein would roll away. I watched her do it, 6 times, and it didn't matter how she tried those damn veins were just not cooperating. I took it in stride, I mean what else was I to do. Then my friendly nurse asked another just as friendly nurse to come in and "stab me". While the verbiage was a bit disconcerting I appreciated that she was looking for other avenues. The other friendly nurse came in and she was able to get a vein, after 3 sticks, but she got the vein. It became kind of comical after awhile. Again this could all be a different story if the friendly nurse didn't known my Aunt, but lucky for all of us she did.



They started the IV at about 10:30am.
Again the room was comfortable, there was a TV, I had some snacks, and my newspaper. I worked on the crossword puzzle a bit, read through mostly bad news, took a good two hour nap, watched Cash Cab, and some other TV. The drip itself made me a bit light headed and like I said I am pretty tired, but all in all it was a non-event. It just took a long long time, 4 and 1/2 hours. Although I got some kicking indigestion coming on right now. I'm gonna have to go find some tums. This is a relatively uninspired post, but I'll drop some serious knowledge tomorrow.

Tomorrow, the future, and IVIG

It would appear that I have been quiet here as of late, but in reality I have been hard at work on a couple of posts that I just don't feel make all that much sense. I'm sorta of obsessing. Replace obsessing with just being ridiculous. Go figure a guy who spends most of the day wishing for unquestionable proof of Bigfoot being ridiculous. I want to be clear and concise for my those of you who read my mindless twitter. What is a Bald guy to do? "Grow some hair." you say. Yeah, thanks, I wish I could.

Anyway, I've been feeling okay as of late, not great, okay. My eyes are still really out of whack and the pins and needles are pretty persistent. The limp in my left leg comes and goes, mostly comes when I go, and tomorrow starts the great IVIG experiment of 2008.

I'll be honest I'm a bit apprehensive about the whole thing. It seems there is very little on the internet about the treatment in relation to MS. It is a controversial course for my disease, so they say. Not because it could hurt, but they don't know if it has any real merit.
Well I figure like I tell my bartender, I'll try anything once. I am then of course reminded that I don't drink and I should stop telling my wife to "put it on my tab". She's not a bartender, nor a server of any kind, and quite frankly she is tired of me never paying my “bill”. Right, well they tell me that it is worth a shot. Both of my esteemed neurologists seem to be in agreement on the topic. The other upshot is they tell me that there are very few side effects, but according to the internet that isn't exactly true.

Allow me to get off topic here for a minute and let me tell you how much I love the internet. If you look long and hard enough you can find anything on here. You need to prove a point just keep clicking and eventually you will find some sort of irrefutable supporting evidence. The great thing is that anyone can write anything carte blanch on the interweb. The terrible thing is that anyone can write anything carte blanch on the interweb. With the advent of Wiki and similar sites, historical fiction just got a new place in the roster. Hypochondriacs unite! Never was there a more comprehensive catalogue of ailments and disease right at your finger tips. Furthermore, that proof for Bigfoot, I think I just got a lead, but I'm off topic, sorry.

Anyway, tomorrow at 8:30am I have a date with a needle and a large bag of antibodies. I pasted some info below from the MS Society web page. Below that I have pasted some info from some other page, that I'm not entirely sure I trust but the crazy green background and 80's style headline font really screamed for inclusion. (I just included the info. You will have to dream about the font)

(from the MS Society)
Intravenous Immunoglobulin (IVIG)

Immunoglobulins are antibody proteins that are secreted by the white blood cells called B-lymphocytes and by plasma cells in response to the presence of a substance that provokes an immune response. This substance is called an antigen. Intravenous immunoglobulin G (IVIG) is a pooled human immunoglobulin G (IgG) that is presumed to modulate the immune system. It has proven useful in the treatment of a number of autoimmune diseases, but its role in the treatment of MS remains uncertain. Different trials of IVIG in different types of MS have produced variable results:There are some data that suggest that monthly IVIG may be beneficial in reducing relapses and/or inflammatory lesions on MRI in some persons with relapsing remitting MS. In other studies, IVIG was not shown to reverse deficits or slow progression in persons with progressive MS. A small pilot study has suggested that intravenous immunoglobulin (IVIG) administered for five consecutive days during the first week postpartum, and at six and twelve weeks thereafter, may help prevent postpartum relapses. Another small study in people who have experienced a clinically-isolated syndrome indicates that IVIG may delay the onset of clinically-definite MS by prolonging the time to a second attack. A recent meta-analysis of the various studies that have been done with IVIG concluded that it may be a valuable alternative for the treatment of relapsing-remitting MS (e.g., for those individuals who cannot or will not take one of the approved injectable medications), but cannot presently be considered a first-line treatment. Additional studies are needed to establish the role of IVIG in the management of MS, and to determine the ideal dosage level.

(from the crazy 80's style website)
What are the common side effects OF IVIG?

IVIg at times causes patients to get a headache, which is more common in females with a history of Migraines. after IVIg infusion some Patients may experience fatigue similar to getting a Flu, which is due to antibodies interaction. IVIg may also cause to patients get a rash and doctors recommended they take Benadryl or even steroids to avoid this. Remember their are a lot of antibodies and some may result in odd reactions. Kidney failure may result after IVIg if less fluids are given. Stroke or heart attack can happen after IVIg if the IVIg solution is pumped in at a fast rate.A severe headache with a stiff neck after IVIg may be due to aseptic meningitis.Variation in blood pressure, shortness of breath, back pain can also be seen after IVIg infusion. Serious conditions like encephalitis, myocarditis have been seen. (like I said you can find anything on the internet)


There you have it in a nutshell (or an IV bag whichever you prefer). I will have a lot of time on my hands this week as each treatment takes at least 4 hours. So check back I hope to update about the exploits of a Bald guy, some antibodies, and proof of Bigfoot.

I Am Not Afraid of You and I Will Beat Your Ass.

While perusing all the music blogs and sites that I digest while diligently at work, I came across this little tid bit.

http://www.yolatengo.com/news_0908.html

Let's talk about Yo La Tengo for a second. If you are not familiar, you should be. If you are and say you don't like them, you should go listen to them again because there are about a thousand other bands you do listen to that have been informed by these guys. If you do like them, good on you.

I mean what else can be said about a band that was chosen to back Ray Davies on tour, recorded a song with Danile Johnston (who sang over the phone), have sited influences from the Velvet Underground, Love, and one of my all time favorites the Soft Boys (again if you are not familiar with this music you should be, not only to get a better picture of the guy you're reading, but I mean, you really owe to yourself. You will be a better person in the end, I promise.) and if that's not enough they put out a record in 2006 with one of my favorite titles ever.

I Am Not Afraid of You and I Will Beat Your Ass

They played my college in 1998 along with Sonic Youth and KRS ONE . Alas, I was not there that day. I was super bummed I missed out on it, but I was in Italy, so I wasn't that bummed.

Not only do they make some of the most literate and informed rock music of our age, they have a bit of a heart too. I'm not sure what the bands connection to MS is or if there even is one, but hey I would imagine every little bit helps.

Although, truth be told I don't know how much I really put into these sort of walks, rides, jumping ropes, pie eating, doing it till it hurts sorta things. The spirit is great, I love that there are people out there who want to do something, but I just don't know that this is the way that we are gonna cure anything. We may even end up creating new strains of virus with all the blisters, corns, gout, and athletes foot that these events undoubtedly promote.

Furthermore, I really wonder where all this money is going. I have some friends that have done these things "for me" and it is truly appreciated, it really is. However I did not see one dime from any of these walks or bike rides. What's the deal? I got the damn disease, figure there should be something that I get out of it. Collecting all this money for "research"? How about researching the cost of my medication or the fact that I still want a flat screen TV. Let's do this: every walker, biker, pie eater, etc who is associated with a person who has MS gives half of what they earn to those of us less fortunate. Sounds fair, right?

Go ahead and ask me again if I want to walk a few miles to cure my disease, the answer is still no. So cough it up walkie, I want my cut.

Seriously though, thanks Yo La Tengo, and everyone else involved. It may not be making a tangible differance to us, but I guess there is a lab somewhere and some rats that are real appreciative. (well, maybe not the rats.)