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.