Friday, September 26, 2008
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.
Thursday, September 25, 2008
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.
Wednesday, September 24, 2008
Tuesday, September 23, 2008
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.
Monday, September 22, 2008
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.
Sunday, September 21, 2008
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.
Friday, September 12, 2008
While perusing all the music blogs and sites that I digest while diligently at work, I came across this little tid bit.
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
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?
Tuesday, September 9, 2008
So we need to back track just a bit. For those of you who have never had the pleasure of inundating your body with Prednisone know that it is not pleasant. Not only does it do any number of God awful things to your appetite, sleep patterns, blood pressure and to your general disposition, but it also destroys your immune system. (This is actually the desired effect, seeing how MS is a dysfunction of the Immune system.) However as I stated in an earlier post the steroids give me a bit of that teenage feeling and those unsightly blemishes that lead you to adult hood have appeared all over my body. It's really kind of gross, however it's the least of my problems these days.
So last week one of these blemishes popped up on an unusual place....My elbow. Have you ever had a zit on your elbow? It's not very comfortable. So I did what any God fearing, red blooded American would do. I popped it. It wasn't near as easy as it looked, and to save you from the gory details, there was a little blood. Although nothing I thought twice about. I went on with my week. Then, low and behold, another one popped up on the same elbow. I'll be damned! I popped that one too. But as they say, "no two go alike, some yell and scream, some go quietly, some explode, some implode, but all will try to take you with them." This one was no excepetion, it was a tough critter, and there was a little more blood. I wasn't happy about it, but truth be told I have popped a few zits in my day and generally there was a little bit of blood.
Now flash forward to yesterday morning and while I am in the shower, I inspect the elbow of puberty, as I call it, and wouldn't ya know it a third zit is popping up. The other two are still trying to heal, so I figure I probably shouldn't touch this one. Finish my shower, make sure it isn't 1992 seeing the state my skin is in, kiss my children and wife goodbye, and go to work (I promise I got dressed in there as well. I did not go to work naked). To be honest it's a bit uncomfortable when I get to work, but hey what isn't uncomfortable at work? Anyway, I get home take off my well pressed button down shirt to play with my sons before they go to bed, and in doing so I notice a long red line that is traveling from my zit laden elbow up into my armpit. Uh oh, this can't be good.
After a short consultation with our resident Doctor/Nurse, Aunt Laura, I am encouraged to get up on my trusty steed (Toyota Yaris) and ride to the Emergency Room. Which I do.
As I am signing in the nurse asks me what brings me in tonight. I raise my arm as I say,
"well I got this..."
"oh, you got an infection."
About a half later I am sitting behind a curtain hooked up to an IV of anti-biotic. As they discharge me the Doctor makes a side comment that perhaps it is MRSA.
Now, I know very little about this MRSA. I do know that it isn't good. I voice my concern to the doctor and she tells me it is nothing to worry about, she sees like 8 or 9 cases a day. Oh, that makes it better. If you notice to the right in my daily prescriptions there are two new entries. They are temperary and will hopefully stave off MRSA, Ebola, or any other concoction of blood poisoning that my ailing anti-bodies decide to throw at me. The red line has all but dissapeared, all the anti-biotics seem to be working. The zits however have not. I'll take the good with the bad.
All in all though it could have been worse. The total time I was in the hospital was just over two hours, I met some nice people, like the lady next to me who had a terrible headache (to which I can relate) they prescriped her some morphine. (I was never given morphine. Why was I never given morphin? ) Then a little while into the intial work up her husband seemed to remember that, oh she was hit in the head with a baseball bat at 7:00pm tonight. Like I said, some nice people.
So on to today, another day another hospital, more good news / bad news. So I go downtown to the good Doctors office at the esteemed hospital, I make sure I am super early as I screwed up last time I had an appointment. I thought that the appointment was two hours later than what it actually was. The good Doctor was cordial about it, but I do not think he was amused, but I digress. The waiting room is cheery as I have said before, but today it is packed with people. Some of them are in pretty bad shape, others look like this might be their first appointment. I can only wonder when they walk out how their out look on life might be skewed.
I sit and read an old issue of Time magazine (still trying to figure out this whole Georgia/Russia thing.) but can't seem to concentrate on the words, could be the MS could be the impending results. The good Doctor comes out and takes me back to the room, we have a conversation about all the things that have been going on, the elbow situation, the flare up, etc. Then I have to go through all the tests that someone has designed to test the acuity of my disease: The feats of strength, walking straight lines, jumping on one foot (if you have MS I am sure you have done all these. I think one day we should have some sort of MS Olympics.) Then the good Doctor disappears to go have a look at my MRI. After about 15 minutes he comes back in the room. He can see one new lesion, a little bit of growth on the old ones, but because of the Prednisone treatment it is hard to tell what kind of activity the flare up is causing or has caused. While the good Doctor does not seem to be upset about it, it does worry me, seeing how it's my brain and not his.
He tells me the IVIG treatment coming up is a good idea, and that while he isn't unhappy with the efficacy of the copaxone it may soon be time to talk about different medication. This means moving to tysabri, as I have already tried Avonex and had a horrible time with it. Who knows? That's all down the road a bit. For now, one new lesion, a blood infection, new anti-botics, and one of the greatest record collections in Philadelphia. (My mother told me to always find a silver lining. I love my records.) We'll make it through. It's the only thing we can do.
P.S. I'm not sure if this post makes sense. I should have waited till tomorrow to write, I am real tired and my choices of words along with sentence structure just don't seem to be firing right now. I wanted to wirte though, there are a few of you reading and I wanted to make sure that you knew I'm okay. Thanks for reading.
Monday, September 8, 2008
As I have stated here before I am currently a bit under the weather with some sort of relapse. I have a slight limp on my left side, and since the relapse, said limp, is much more pronounced. In trying to compensate for this limp, or forgetting to compensate for this limp, which ever, I will often list to my right side. Perhaps bee lining for a wall (this always gets the co-workers wondering) or just looking like I had one too many cocktails at lunch (this generally gets a nod of approval from the co-workers, strange.). Either way it becomes rather precarious when I enter the restrooms.
Now picture it if you will, (gentlemen I realize that you are fully aware of how a men's room is set up, however like snowflakes there are really no two alike, and ladies I'm sure you can use the visual.) here, where I work, the men's bathroom is quite vast. You enter with about 10 hands free sinks split up on either side of you, those intense mirrors so that you can stare into infinity for a good long while as you wash your hands. Then you can pass (get it pass) into the area where you do your "business", 15 urinals on your right, and about 15 stalls on your left. Now this is where the interesting thing about having MS plays out.
At any given moment there are gentlemen using the "facilities". Some at the urinals, others in the midst of lets just say number two. Now, I am aware that my limp will take me toward the urinals, I however, need to judge just how close I will come. You see, I could end up by no real action of my own just bee lining to my right hand side. This could be a problem as most guys would find it rude, inconsiderate, or just down right icky if some bald guy would come up behind them and give them a little goose while they were in the midst of lets call it number one. Furthermore, it isn't all that easy to recover from listing to your starboard side and I would inevitable take out a few more fellow urinators as I tried to regain my balance. In order to protect myself and the gentleman with their valuables in this vulnerable state of exposure, I try to over compensate by shoot far left. This leads to another problem.
Now I am up against the stalls with guys in there doing God knows what. So not only do we have the obvious olfactory problems to contend with, but now I might look like the odd bald lurker. The weird guy who is in the bathroom often and likes to creep up on dudes who are.....lets just call it in a state of disrepair. Not to mention if I get side tracked looking for a urinal to use and somebody opens a door to the stalls in front of me. SMACK!!! Sadly it's almost happened a few times.
I write to tell you these things because these are the trials and tribulations of those of us with MS. I'll bet you never thought of it like this. God knows I have. Anyway, it's on to the good Doctor tomorrow to get the results from this weekends MRI. Hmmm, I gotta go use the men's room. I'll bet you saw that coming. Unfortuanatly it's true.
Saturday, September 6, 2008
Friday, while at work, feeling pretty good, (until about noon, then I got really dizzy and just tried to stay sitting) I made another call to the good Doctors office. I was still kinda hot from the day before and I was ready to take a few verbal jabs over the phone. Called once, got the machine. I decided not to leave a message, I saw how well that worked out the day before, so I called back a few minutes later. Success! I actually got a real live person on the phone and it was the good Doctor's secretary! Score! I jumped into my story feet first and before I even finished the first sentence I heard, "Ben, of course, we want to get this all worked out." I was a bit taken aback, I mean, I want to believe in the best of people, I would like to be a trusting man, but as they say fool me once.....Anyway, she got the schedule people on the phone, and unfortunately they weren't able to help me. In their defense they tried, but their hands were tied. I began to lose heart. That whole trusting people, beliving in the best starts to fade, but then the good Doctor's Secretary called in the big guns. She decided to go right to the top and call the women who actually schedule the MRIs. Now I knew we were gonna get somewhere. The phone rang, it rang again, it rang a third time, and then...an answer machine. Oh the humanity! Like getting my legs cut out from under me, sand kicked in my eyes, and told I have incurable disease. Oh wait, um, already happened, minus the sand. Anyway, had I gotten my hopes up for nothing? Here I sit with dreams of MRI in my mind and all I get is this rolling office chair and my bony butt. However, the good Doctor's secretary still seems hopeful and leaves a message with my cell phone number and tells me they should get back to me soon. We hang up, and honestly I feel a little hung out to dry. I go back to my desk and surf the internet some more.
Incidentally I do a lot of this at work. I mean I work my behind off, but really only on certain days. So I'm not sure exactly why I have a full time job. I don't want to seem ungrateful here, I mean who gets a job like this in these economic times, but I mean seriously maybe we are in tough economic times because you're giving guys like me cushy jobs in middle management, but I digress.
About an hour later I decided to give them a call back on the number that the good Doctor's secretary has supplied me with. No luck, back to the machine. I don't leave a message. I figure no reason to seem desperate, or at least to remove all illusion of being as desperate as I was. about 20 minutes later the phone lights up and low and behold its the girls from the MRI scheduling department. Apparently they are also aware of my plight and are on the case to rectify the wrongs that have been committed. Wow, what a difference a day makes!
Well, the MRI girls take a look and see that they have a 12:40pm appointment on Saturday. Perfect I say. Then they get into the nuts and bolts of it, insurance, prescription, etc. I feel that old nagging feeling of disappointment creeping in, or it's just the pins and needles in my hands and feet from the MS. Either way I'm not happy about it. Just as I am figuring they will say sorry we will see you on the 17th, I hear, "okay were gonna have to give you a call back, I'm gonna need to call your doctor and insurance company. I have put you in for this appointment regardless." Then I heard it," Don't worry we'll get this worked out for you." Wow what a roller coaster of emotion. So through out the day my cell phone rang, the nice women of the MRI department giving a call just to let me know at what point of the process they were in.
"Got your prescription...We are in the process of getting a pre-cert...you should call your insurance company they have your name spelled wrong.(figures)" Helpful things like that. All in all it was a pretty great experience.
So here we are Saturday evening. I have been to the hospital had my MRI. Again all in all a good experience. It being a Saturday there were very few people around, only one kid and he was getting in trouble by his grandfather, so he was in good health. I signed in, and still had my paper work from the other day all filled out, handed it to the lady who said, "Oh my God, this is wonderful, I could just kiss you." Then she looked at me and kissed the air, simulating that she was giving me a kiss. I have to say it was a surprise to me, but better than say her taking a swing at me. Although, I'm sure if her man had walked in at the time he might have taken a swing at me.
Anyway, then they walked me back to the MRI area, which is where I have to get into those flatering hospital gowns. For whatever reason they make you get in two of them: one forward, one backward. Niether of them seem to really fit or tie properly, and as I exit the dressing room and take a seat in the MRI waiting room one of the four women sitting there kindly lets me know, "if you are cold there are lots of blankets just over there on the shelf." So I sat with the nice ladies and talked. Turns out two of them were from the greatest place on Earth, my home town, Reading, PA. (there will be many blog posts to come about the greatness of Reading, PA. Yes, the Railroad space on the monoply board.) The other lady and her daughter spend three months out of the year in Disney World. It was a very informative wait.
Long story short they take me back set me up in the machine. I ask for some extra padding under my head. I don't know if it is the lack of hair or what, but I always seem to get a terrible pain in the back of my head, then a knot for like two days. I am trying to avoid this. The first hour isn't so bad. I fade off, sleep, in and out, but the second hour, after they inject the contrast it isn't near as comfortable.
I guess sitting still for that long starts to ware on a bald guy and I become very much aware of the pain in the back of my head, I guess the extra padding, read folded towel, isn't really doing the trick, but I can't move my head due to the actual reason I am there. Then my face starts to itch, again very little you can do about it because of the reason I am there. I can however move my hands which have fallen asleep, but that is easy enough to shake off. Truth be told before I know it I am being pulled out of the machine, and they send me on my way. I ask them if they know what it is like out side, one of the ladies says, "hellish." Hmm, that could mean any number of things when you live in Philadelphia. Although, it seems the portion of hurricane Hanna that is suppose to hit us has hit. I make it to my car, pay the $9.00 to exit and piolt my little Yaris throuh the city of brotherly love, back to my home. I think I hit a lull in the storm, it really isn't that bad.
Thursday, September 4, 2008
So, in starting this blog, I really wanted to make sure that there were some informative things, interesting tid-bits about MS and how I deal with it. I did not, by any means, want to be a cyber-bitch. I have been looking around at some other blogs, and I have found some of them are just that: cyber bitches. Now I can understand that MS or any other disease, illness, shortcoming, life difficulty, or stubbed toe is hard to deal with on some level, and yes sometimes we need to just blow off steam, and for lack of a better word, bitch. There are all sorts of ways to do it verbally, signs on the side of the road, classified ad in the back of the city paper, or cyberly. However sometimes is the key word here. I mean, let’s keep it together people. That being said please allow me to bitch.
I was seventeen years old the first time I was pushed into a MRI machine. I was sure that once the films were inspected I would be rushed to the nearest hospital, I knew I had a brain tumor.
A few weeks before I had awoken in blinding pain, my right temple was throbbing, and the second I was able to concentrate on a feeling it peeled away to reveal a new demon, new form of injury. It was December of 1994, I was a senior in High School.
I remember the moon fell through my window like someone had lit my room for a movie. In my memory the light was so white, and the moon hung full in what seemed to be a starless sky. I moved down to the foot of the bed, and let it bath my throbbing head. In my desperation I had hoped that the moon might be able to soothe whatever was broken. I don't know if it was the moon, but I fell back to sleep, and woke the next day hoping that it was just a dream.
It wasn't. The headaches kept visiting me. First every other night, then each night, then in the morning, until there was nothing I could do, the headaches came whenever they wanted. The doctors were baffled. Like so many of us out there I bounced from one doctor to the next with little results, finally one of them said, "Let’s get an MRI."
There was no brain tumor, there nothing actually. The films came back normal, and I was left where I started. Blinding, uncontrollable pain, and no direction to throw a punch. It was sometime around then that I heard a phrase that haunts me to this day, "It's all in your head, you’re just stressed out. Just relax and you'll be fine."
I'm serious! In fourteen years more than one doctor has said this to me. No matter how I pleaded, no matter how well I understood that my body wasn't like the one I was supposed to have. But what did I know? After all they were doctors, I was just a kid.
After about three months the headaches disappeared, I began to believe that maybe I was just stressed about getting into college and finishing up High School. I moved on, thankful that I had made it through, yet still wary of just what had happened.
To make a long story short the headaches returned every year since I was seventeen years old, once a year for about three months. Somewhere in the last fourteen years, someone realized that the condition I had is known as Cluster Headaches. I will spare you the details of the condition, there is a link to wikipedia's informative page on the right, but know they are not pretty and a large portion of the people that deal with these headaches, also known as suicide headaches, don't make it through. That being said, I will not be one of those people, although, I truly understand.
So, eleven years later and at least one MRI for each of those years, and I start to exhibit new symptoms. Numbness, lethargy, dysfunction of my hand and fingers, then my speech started to slur. I was unlucky enough not to have health insurance at the time, although I was lucky enough to have a great doctor who wasn’t going to say, "It's all in your head, you’re just stressed out. Just relax and you'll be fine." Although I have a sneaking suspicion it was in the back of his head.
Truth be told I was stressed out, I did need to relax, but I knew this was something more. I had a new problem. Through a series of heroics of said doctor he got me an MRI sans payment, and in those films we saw what I had always suspected. Well, not a brain tumor, but something almost as devastating: Lesions.
Flash Forward to yesterday, I have been diligently fighting MS, still getting the Cluster Headaches, and getting at least two MRIs a year. Yesterday, I was supposes to go for my bi-yearly check up. It just so happens that it falls during this time of relapse, I would suppose that some would say it is "good timing". I would have to say that that person is an idiot. Sorry, no need to call names, there will be plenty of time for that later. However, there is something to be said for fate or kismet or whatever you want to call it.
Now here comes the bitching, feel free to look the other way.
I again have been blessed to live here in Philadelphia, (although some feel it more a curse) and by living in Philadelphia I have one of the pre-emanate medical facilities at my disposal. Furthermore, luck would have it, my wife’s cousin interned with one of the pre-emanate MS doctors in the country. So if we do a little addition here, pull a few strings, grease a couple of palms, and viola Bald Ben becomes a patient of said institution under said doctor. (This isn't the bitching part, just a little background so the bitching is that much sweeter)
Now this facility has all kinds of things that your average doctor doesn’t have access to, at least this is what I am told. In addition, my doctor has invented his own protocol for the level of imaging he orders for his MS patients. Granted the actual MRI takes almost three hours, but the end result is worth it, I guess. (that was a little bitching, but I'm about to get to the real bitching)
So, here we are September 3rd 2008. I took the day off from work, woke up a bit earlier than I really felt like it, kissed my wife and my baby boys goodbye and jumped in my Yaris and headed down to the hospital. This place is huge, all kinds of different buildings with names of donors that I am sure could buy and sell my disease at will. The bewilderment that already exists in my head due to the MS and my current flare up only add to the confusion that is this hospital. In fact even if I was totally healthy, employed Marco Polo and maybe a few sherpas I might be able to make it to the appointment on time. However, by dumb luck, I find the door that I am supposed to enter, only to see a sign that reads:
All MRI registration has been moved to X building on the ground floor.
They sent me a paper that said to come here. Someone put it in an envelope, affixed a stamp, dropped it in the mail, and sent it to my house. These directions that tell me to come to this door! What's more is that I stopped and asked no less than two people about where it was I needed to go, and no one clued me in on the change. I'm so tired, walking right now, aimlessly, is not in my best interest. But I turn around, walk what seems another half of a mile, ask one person, and by what would seem to be pure chance, stumble into the registration area with three minutes to spare. I sign in and take a seat.
Needless to say, I find the hospital a bit depressing. Not only are there lots of down trodden people in the waiting room dealing with troubles bigger than mine, but there are also a ton of kids there. One boy I am sure is there because he needs to be seen by a doctor or is getting an MRI of some sort, heartbreaking, because he has the biggest smile on his face, his hair is a bit messed up, his cloths look like they’ve been twisted round his little body, no doubt in his indeterminable struggle with a world that he just wants to explore, but by his smile you can tell he has very little idea of where he is or at least why he is there. However, the mothers face tells a different story, one that needs no explanation, she is holding on to her little boy like he just might slip into that tube and never come back, at least not as the same boy he was. It makes me sad.
There are a plethora of other kids there just waiting for a mother or father. Unfortunately these kids are rude or at least loud with one another, and have no business being here. Not just because of their disposition, but they are loud and rude for a reason: they are kids. They should be outside, playing, shooting a basketball or figuring out how the world spins. They should be far from the misery that surrounds this place. I pull out my crossword puzzle and get to working on it. (Bitch alert) It's hard and I can't seem to really make it work today, I don't know if my mind is elsewhere, or it's just beyond me, either way it makes me angry. (not sure if that's a bitch or a whine. Either way, you were warned.)
(this is my puzzle that I couldn't finish!
Again, my puzzle.
Do not finish it and send me the answers.
It may force me to think about knocking you one on the head.)
"Fernanada...Ferr...Fa...Benjamin?" I get called up to the registration desk. I sit down in the chair and begin filling out the ubiquitous paper work and answering the ubiquitous questions. Home address, SS#, next of kin, Insurance. You know the drill. However when they get to the insurance question they ask me if I still have an insurance that is not current.
Here's the deal: In March I started a new job, with the new job, new insurance. The last time I saw this particular doctor they told me I would need to get one of my bi-yearly MRIs in September. I knew that by the time I was ready for the MRI I would be under the new insurance. I told them this, and they told me to make sure I called them with the new info so as they could get any pre-certifications that they might need. Fair enough. Now being in the situation I am in, this sorta thing is important to me, so I began my coverage of my new insurance (which is scary in and of itself, for another post though) I called said doctor office and after a few "hold on a seconds, and let me transfer you." I updated my info with a nice guy on the other end of the phone, and just a few days later, in the mail I got my confirmation for my MRI (with previously mentioned directions). Good, fine, great September 3rd put it in the book and take the day off from work.
Now here I am at the registration desk and no one has the new insurance information!? Needless to say I am a bit perturbed, but the woman behind the counter is pleasant, I still have my crossword puzzle, and she seems to have lots of people to call that maybe able to help. About 20 minutes go by and she tells me to go back and take a seat, they are looking into it for me. I'm a little hot, but I have always been under the credo of "kill 'em with kindness." These people get yelled at all day and as I am sure we have all seen they turn off the minute a voice is raised or a snide comment is leveled. I thank her for her help, which it seems she appreciated, and I take a seat. I still have my crossword puzzle. I sit for a few more minutes, acutely aware of previously mentioned children, very tired, a bit dizzy, and suddenly I hear my name one more time. Finally satisfaction! I get back to the window only to hear, “It turns out you do need a pre-cert with your new insurance, we're gonna have to reschedule.”
OH MY GOD! I am hot, but again I know it is not this woman's fault. I do not lose it on her. She then tells me I need to go upstairs to my neurologist’s office to update all my info with them and then they will see about a new appointment. I'm sure that she realizes that I am upset and apologizes many times, but I tell her I know it is not her fault and thank her for all her help. I go back out into the hallway. I get lost again. If I wasn't so tired I might have started hurting people, that guy in the bandana was lucky I had MS, otherwise I might have laid him out. I ask directions, get to the right bank of elevators, and in all my MS wisdom promptly forget which floor they told me to go to. Apparently it was not 4 nor was it 3. Luckily it was 2. I make it in to a much more cheerful waiting room, but with people that have my disease, other neurological diseases that I don't want, or people that care for those that are infirmed. Oh and a handful of kids. It is a bit of a bummer. I wait in line, patiently, until a nurse finally asks me if she can help me. Can she help me? I take a breath and begin to explain my situation. She stops me and says," oh your the guy..." She isn't very pleasant and it is rubbing me the wrong way. However, kill 'em with kindness, right? I finish my side of the story and all she has to say is, "well who did you talk to originally to update your information?" I couldn't remember. "Oh, well you need a name. Always get a name."
Oh right, because I was supposed to know that here in one of the top hospitals of these fine United States of America you employ the unskilled, the useless, and the inept. I am supposed to check out the referrals for the neophyte on the other end of the phone. If I was to call into question this gentleman’s credentials some might call me paranoid because I didn’t, now somehow I am the incompetent one. Furthermore what kind of system do you have, I clearly heard the guy typing? Was he just tapping a pencil on his half eaten cookies or was he practicing his dancing on my file? What’s worse is that now my anger is displaced, somehow they have turned my justified anger onto someone that for all intents and purposes doesn’t exist. I'll never see this guy, nor if I did would I even know it. It’s this woman in front of me who I think deserves the tongue lashing, but I can tell that somehow this woman is feeling that I am taxing her out, I have some how thrown a wrench into her day. Perhaps it was close to quitting time, or she needed a break for some more cookies? If not for the tiredness, dizziness, and slight nausea I might have jumped over that desk and shown her a thing or two about customer service. She, like the guy in the bandanna, is also very lucky I have MS.
To make a long story a little shorter, she told me they would look in to it and try to reschedule me as soon as possible, maybe Saturday. That would be perfect I tell her, as I have already taken off from work today, I actually have off this Saturday, and I have an appointment scheduled for the 9th with the fine doctor. I humbly thank her for her help and make my way back to my car. I am too tired to be truly angry, it is a waste of my energy and my time. I pay the $5.50 for the parking and make my way back home. I see my wife and children and know that it will all be okay at least I get to spend the day with them.
Incidentally, the rest of the day we ran a few errands and when we returned home we had a message from the doctor’s office. Turns out my new insurance didn't need a pre-cert. Oops. Oh and they rescheduled me for Wednesday the 17th. It’s like they think because I have a disease I live for that disease. This is not the case, I am still in half way decent shape, so as they say, I am making hay while the sun is shining. I can't take the day off from work then. I have been trying to get a hold of them all day today. Surprise, I haven't been able to do it.
Thanks for reading, if you're still here, sorry to bitch.