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?
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.
Beyond Bone Tired
1 week ago