The ER checked my heart, so thoroughly that I didn't get to leave the observation room I was placed in shortly after arriving for three days. All they found out was that I had a strong heart. After handing me countless trays of meat meals they realized I wasn't objecting to the hospital food it was more the fact that even though my info board had big block letters saying NO MEAT they kept bringing me trays that would make a hungry vegetarian cry. At one point I was quite worried about my husband launching the hospital tray of food at the orderly if it arrived again with meat on it. But I digress, in the end they let me walk out of the hospital with no answers because well I wasn't an emergency case anymore. Can't argue with that and I could move my arms again, knew who was president and could walk without falling down so it was back to life.
Your B12 is low, please come in for an injection is the message my doctor left on my voice mail, um hello?! HIPA much? (I am of course referring to my privacy being violated on my home voice mail machine for anyone to hear) One 'ouch' later I went back to work and was on my way to recovery... until I started falling down again, dropping things, forgetting the word I wanted to use like cat when I saw, a cat and I knew that being a vegetarian who let her B12 get too low wasn't my problem or rather it wasn't my biggest problem.
We want you to see a neurologist. Ok I have an appointment in a month and upon hearing this my doctor informs me that I need to see someone earlier, that she made me an appointment for tomorrow. Yea that's going to register with me as panic, why the urgency? I'm tired of being exhausted just living, of snapping at my boys and dropping things while I try to make meals so I go to the appointment. I answer her questions, I take her little in-house test and I see the look on her face when I start failing to respond in an unremarkable way. I am becoming remarkable and in medical terms that is possibly a life changing event. I have several tests that I have to schedule with the receptionist, there is someone in front of me scheduling some of the same tests I need and I hear them tell her that the earliest she can get the tests done is October. When it is my turn I am scheduled for the MRI on Sunday morning (2 days later and on a Sunday morning!), the EEG and other tests are next week, October is never mentioned and once again I remind myself to
B R E A T H E.
"Are you claustrophobic?" I didn't think so but upon arriving I am immediately asked to change into a gown and escorted to the MRI room where a long narrow cylinder full of magnets waits for me. I want to run back out of the room to the front desk and say "Yes!" but I need to get better so I plan to suck it up. Besides, many people have had this test done. The tech places big old school headphones on me and takes my Ipod which is queued up to play Steve Carlson's music while I hang out in the coffin like chamber. When I think about my family I panic, it's like a switch (what if something is wrong with me? How will I tell my boys, my husband, my friends, loved ones and I need to move but I'm entombed up to my hips so I can't, which kicks off more intense panic) and I must hold still and ignore the fact that I cannot move my arms or head, the tingling in my body from the magnets doing their work and the loud noises the machine is making during the test. So instead, I think about media, say what you will about the entertainment industry but focusing on the premiere airing that night of AMC's Hell On Wheels and my favorite 'ships' kept me calm and still for the almost hour duration of the scans. Of course it didn't hurt that Steve Carlson was singing in my ear. It was a quick answer to the questions of MS and Lesions which was negative on both counts.
I saw the techs face after the EEG and the fact that she was now treating me like I was fragile. I heard her answer someone with a 'NO' and hand my file off so I drove home to build Lego cities with my boys while I waited a few weeks for the next scheduled test. I forgot about worrying that it seemed to physically hurt when someone in the doctors office ripped a piece of paper and that the tech started ripping paper as I lay next to her with my eyes closed and my head wired up. Then before I had made tea the next morning the phone rang. "The doctor would like to meet with you before your next scheduled appointment. How far away from the office are you? Can you be here within a half hour we will page the doctor." Oh damn, I am no longer unremarkable. I think I am going to miss that. I remember moving as if there was this black cloud over my head, I believe I might have even looked up once to check if it was there but then I got dizzy and almost fell over. My friend took my boys who sadly at this point know that mommy is sick and promised to behave while wishing me good luck and running off to play with their friends. So me and my black cloud went off to meet the doctor.
"Hi Sweetie here come right in and sit in the exam room." My black cloud is thundering now and I'm waiting for the lightening to strike. B R E A T H E The doctor leaves a patient to enter my room and quickly informs me that while it's serious, it is treatable. She informs me that I completely failed my EEG, that my left frontal lobe was misfiring, then the right frontal lobe and then the temporal lobe joined in the light show going on in my brain. "You mentioned you had an EEG before and that you have recently been informed of a family history with epilepsy from your biological mother?And no other doctor ever saw anything on your EEG?" Umm. No or they failed to tell me about it, because according to my neurologist (wow I have a neurologist) she is looking at likely 3 decades of untreated epilepsy. One little misfire leads to another then before you know it or if you don't treat it for thirty years it's the Christmas light effect; one goes off they all do. Damn, that's defiantly remarkable. I'm reminded that it's treatable that recent advances in medicine have enabled neurology to have a greater comprehension of the human brain. B R E A T H E. Has it only be 5 minutes since I entered this room? I am informed that I was called in to begin treatment immediately to attempt to calm down the misfires. She keeps using that word and I am not understanding exactly what that means but there's a patient next door and my always present consideration let's the word slide because I do have another appointment scheduled in a few weeks. I am told that I cannot work for a while and I am to call if I have any questions or concerns. Before I leave I am scheduled for another test a 72hour EEG, I am set to get hooked up in 5 days. As I leave a man in the office is complaining about how he has to wait weeks for his, the office assistant tells him "that's a good thing" (translation I'm likely screwed if I am scheduled within a week). B R E A T H E
"This is the pharmacy, your prescriptions are ready to be picked up." I am on my way home from my doctors office. I have NEVER had a script filled that fast. Kids in the car, I swing by the pharmacy and get my three medications and chocolate. One med I am to take immediately, I am actually worried the pharmacy won't let me leave without taking it first. I take the medication but not before calling my family which is a good thing because ten minutes later I cannot keep my eyes open. My always there for me mom and dad have arrived to take my kids and I barley make it to my bed before I crash into unconsciousness. I later learn this is totally expected and will continue for about a week as the medication works its way into my brain chemistry. Oh crap it has just become clear that we are drugging my misfiring brain. "It's going to get worse before it gets better, just take it easy, watch tv, go to bed and your to relax, doctors orders" this is what I am told when I call her office on the third day I take my meds and fade into slumber within a half hour. If I could gather my thoughts but the meds are adding more confusion to my already addled brain because I should be panicking over not getting my boys ready for school; haircuts, new shoes, warmer clothes, does C have a jacket? Instead I am lying in my bed trying to keep my attention on the tv show I am watching but it is too confusing so I fall asleep instead.
Everyone who complained to me about the fact that I have an Iphone 4GS can bite me, because now Siri reminds me to take a pill, to eat lunch, when my next doctor visit is and whose birthday it is today. My husband can send me photos and videos while he is out with our boys and now 'checks in' on Facebook so I know what's happening. I am in love with my technology because it saves me from an expected depression from missing out on enjoying being alive. My latest toy is apple tv which enables me to push anything on my computers to the television screen so click and instant nostalgia or distraction. Now, now relax. I am not saying this is fantastic I'd rather be out with them but for now I am grateful for my technology leash I have on my family, it keeps me connected to them.
I realize my husband is talking to me but I cannot get my thoughts together enough to answer him, the sun is so bright that my head feels like it's gonna pop. There's a perfect vampire reference here but I'm moving past the obvious. I'm trying to order a pizza which shouldn't be this hard. I find myself taking pictures with my aforementioned iphone because looking at the world through it's screen doesn't make my head hurt as much. I can see where that sentence could come back to bite my technology love in the butt later but for now I am out of the house. Dinner is complete and I had two pieces of pizza which unlike before has filled me to bursting, I am enjoying the appetite suppression side affect. I am supposed to walk with L to the ice cream shop which is down a few store fronts and across the street. Seems putting one foot in front of the other is getting more difficult, L is holding me up and while he is proud of himself I am secretly horrified that my barely 7 year old is pretty much holding me upright. We are not crossing the busy road until my husband returns because I am unstable and growing more fuzzy as I try to comprehend when we are clear to cross. Damn that's embarrassing to write. I am feeling a bit better and make sure L avoids the nut ice creams, my husband is humoring me because I have totally stepped in on what he's was doing just fine with but he realizes that right now I need to have control. Fifteen minutes later, there is ice cream dripping down my hand but I cannot seem to move, I am staring at flowers and I hear my son talking but can't make out what he is saying. Then suddenly I can move again and take the napkins my husband is handing me. "Mom your supposed to eat your ice cream before it melts" I want to cry but am now so tired it's all I can do to make it back to the car. Oh joy it's my bed. Glad I finally caved and paid sleep number to have the pump fixed cause I am pretty much living in it now.
I know why I enjoy watching the same movie, tv show or youtube video repeatedly, it calms me. Friday afternoon my father has picked me up and transported me to get hooked up to a mobile EEG which I will wear for 72hours. I am wearing a helmet of gauze and tape which is covering the electrodes on my head. I am constantly bumping the pack on my side that holds the recording box and the wires, well they are colorful and tangled in my hair making me look like a George Clinton wannabe. People like to stare when I step outside my house and I missed out on a trip up North with my boys but this is supposed to give my neurologist the detailed information she needs to treat me effectively. So, I sit here blogging, watching my Vampire Diaries playlist and I am content because five hours ago I sat in this same spot and I couldn't make a grocery list.
The last ER doctor I saw that hospital a month ago told me that I had one of the strongest hearts he had seen in years, which is good because looks like I'm going to need it. B R E A T H E
I'm sharing because maybe you have been here too or you asked or because inadvertently you helped. I don't need attention or sympathy, I am happy, loved and so ready to fight for a epileptic free tomorrow. But I will be wearing more purple.
