Have Mrsa on me.....

In starting this blog I figured I would post once a week or something, drop a few jokes, make a couple people laugh, throw a few commas in the wrong, place. I did not however expect to be able to blog everyday on something else that has gone wrong with my body. Amazing, since I have started this blog I have entered my second relapse, had difficulty with scheduling my MRI, allowed the world to ready about my slow bladder, and now I get to blog about the last 24 hours that found me in two different hospitals with news that I am still trying to figure out if it is good or bad.

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.

I'll bet the nurse has the answer to my crossword puzzle too.

(be forewarned, this is a very long post. Be prepared, eat lunch, make sure you have a glass of water, get oxygen if you need it, most important tell a buddy where you are. If you get lost you may never be found. I just want to make sure that everyone is safe.)

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.

WHAT?!

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.