It began the previous week when a fire at work started out as a slow ember. By Monday, it blew up gorgeous blaze that only I could fix and spent all of my waking time working on the problem through the course of the week.
Monday eve I saw my medicating doctor, whom I’ve partially fired. He agreed to start downgrading me from the lithium, which is going to take about a month or so to happen. He’ll still be my klonopin dealer, thank fuck, but my involvement in the world of chemical imbibement is going to be gone.
Tuesday saw the advent of my period, who’s new thing is to play a game of “Heavy, heavy, normal, light, YOU ARE GOING TO BLEED TO DEATH!!!!!” pattern by the end of its cycle. Tuesday also was the day of my EEG, which after the procedure I had the energy of slug and slept for most of the day.
I taught all day Wednesday and Friday.
Thursday was the day all faculty had to have their projected performance evals done and turned in. Mine was not so. When I was at work, not teaching, not on the reference desk, I was trouble shooting the aforementioned gorgeous blaze that the final data collection submitted to IT was closing in on half a dozen pages of notes and results, which was submitted on Thursday.
Friday morning an email from my dean on why my eval was not completed and he wants to see me ASAP. My response was a copy of the six page ticket I opened with IT and an explanation of what I had been doing for the past week and half. I promised to finish the eval this weekend, but of course! The online system we use for such things, running on Oracle, is dead in the water. Oh, how bittersweet! Monday’s early appointment with my dean should be loads of fun.
TheHusband and I spent a good portion fo the weekend cleaning – it’s that time of year you know. People get overly excited for decorative gourd season and the onsalught of pumpkin spice latte whatever. Me? I dream about cleaning. We divided up the work over two floors and two days, and if we’re honest, we probably didn’t work as hard or get as much done as we had planned. But we’re okay with that, as we plan on pecking at it during the week
I burned through a lot of appointments this week and some commitments that I have set up for this upcoming week are going to be curtailed. I’ve decided to start reigning in on some things for the moment, only temporarily, as I wean off the drugs. If anything has been learned of the lesson of my drug life, the lack of any kind of emotional planning for what is going to happen is naught. Yes, I get it – you can’t control when the crazy comes but it would be nice to at least have an inkling. Thus, I’m clearing everything off the decks while I detox.
During the downtime this weekend, I worked a lot on the archives the site, hanging out mostly in 2010 – 11, which was not as interesting as 2003 or 2008, but there is a lot there for me to process. I also updated a few projects that were found such as Book List and To:Be Project, both which will remain current.
I get a hankering to look at the archives as work continues because seeing some of those years fill in makes me happy. I don’t only feel like I’m doing something here, completing a task, but I feel like I’m making art.
I learned today that one cannot tweet when one is having electrodes placed on their skull. But then, you’re so tired from the sleep deprivation, the last thing you want to do is lean over and grab your phone to tell the world you’re beginning to look like the Bride of Frankenstein.
The EEG test required me to be sleep deprived, so I fell asleep at midnight and woke up at 4AM. No caffeine. At 7:15, I woke TheHusband up for us to head to the hospital where the procedure was going to take place. I was feared I was going to end up getting amped up on adrenalin that would prevent me from falling asleep during the procedure. I also feared of falling asleep while driving. There are times when having a husband is useful.
The EEG testing unit is buried in the bowels of the hospital, a set of complicated instructions arrived in the mail, but we got there will little delay. After I checked in, I was called back by one of the techs who was admonished that “Donna has to learn patience. I have to finish checking her (meaning me) in before Donna can have her.” More conversation. I’m told to sit back down. Then stand back up to follow the not Donna to the actual testing area. The not Donna kept apologizing along the way for what has just transpired. There seems to be some drama fraught at workplace.
I meet the Donna when I’m led into the room where the testing is going to take place. Donna goes through my paperwork and seems perplexed as to why I am here after I answer her questions. I document my seizure history, starting when I was 3. She then wants to talk about “my other issues,” which she means my mental disorders. These I had already mentioned to her earlier questions and I notice she has a hard time saying their names, her mouth seems crippled. I say them clearly, for her to make sure we’re clear: Bipolar I, Borderline Personality Disorder. ADHD. General anxiety. I explain, again to her since she seems confused, some of the symptoms associated with one disease is duplicated across other diseases. For example, the tremor in my right hand and leg, which happens rarely, is from the Bipolar, not neurological.
Donna’s seemingly reluctance at my answers is making me anxious. I find that slightly hilarious so I giggle while she finishes up my paperwork.
Prior to the placing the electrodes, the not Donna measured my skull and gave Donna seemingly random numbers that sounded like some sort of key, “6. 5.8, 6, 6, 5.8” and would act slightly intrigued when something came up as a “7.” “Are you sure?” the elder would ask. “I’m sure. It’s a 7.”, the junior responded.
I still have no idea what they were talking about.
After my head was measured thoroughly, and marked all over with red grease pencil, they began placing the electrodes on my head, using a heavy glue for the attachments. I’m assured the glue, another sticky product, and the grease pencil are all water soluble.
Donna and not Donna start working on placing the electrodes me, one obviously more confident or has been at her job far longer than the other. Donna’s confidence in what she was doing overshadowed the other tech, who while as agile with her fingers, often seemed to pause or was hesitant about what and where she should mark. I was getting annoyed with the confident one as she marked and place the electrodes on my skull, she had a habit of pulling my hair just enough to make me cringe for a nanosecond, but not so much that it actually hurt. Since her counterpart managed to not do this, I took it as some passive aggressive act about her job. This was cemented when one of the electrodes seemed to apparently not be working correctly, as she worked on fixing it, she had no problems being rough with moving and cleaning the electrode around my head, pulling my hair roughly a few times about with the shift.
After I was wired up, my head was wrapped with several rolls of gauze and I was told to lay down.
The room was sterile and devoid of any comfort. I was wearing a cardigan, sports bra, tshirt, and yoga shorts and I was shivering. The not Donna asked if I wanted a blanket, which I gladly took. I couldn’t get warm and I tried not to be scared.
There were several tests that were performed, the first of which with my eyes closed, various patterns of flashing lights were pulsed in front of me. Some flashings did nothing to me, others caused my eyes to rapidly move. Was that normal or was I having some sort of non-epileptic seizure? Another test was a breathing test where I breathed out, from low in my diaphragm, for three minutes. Harder than it sounds. The final test was the sleeping test, in which my brain waves were measured as I slept for 20-30 minutes.
Apparently I conked right out, because one minute the Donnas are talking to me and the next, I’m being woken and informed we are done. I was uncomfortable in the room, cold still. I’m a side sleeper, something I couldn’t do for the test with my head wrapped in electrodes, thus the fact I slept was surprising.
The Donnas spent a few minutes unwrapping me, taking the electrodes out. The not Donna hands me a comb similar to the one we used to receive in grade school on picture taking day to run through my mop to get the electrode gel out and I laugh because my hair would break such a comb. I run it through anyway and it pulls and tugs but does not yet break, that it is easier to use my fingers to hunt of gel bits. Once I’m made somewhat presentable, I’m let free and taken back to the waiting room where TheHusband waits.
I’m told I will hear in 7-10 days from my neurologist.
Me, personally? I’m betting it’s what the doc said: I was epileptic when I was a kid and now the symptoms I’m thinking are epileptic are actually non-typical migraines.
We went to breakfast and came home by 11A where I slept for a few hours and TheHusband went right to work. I spent the rest of the day lounging, keeping up with my RSS reading and TV watching.
In other news, my appointment on Monday with Dr. H., the medicating doctor, went as I had hoped. He agrees to take me off of lithium, which will be much more involved process than I had hoped. I had already taken myself down from 1500mg to 1200mg, so I’ll remain at 1200mg for the rest of the week. Then I’ll go down to 900mg for a week, then 600mg for a week, then nothing. Dr. H. also cautioned that if I felt good on a particular dosage, to stay on that dosage and call and let him know. So if the crazy is tempered by 600mg as opposed to my 1500mg, then bully for me. I’m willing to do this, but if things don’t work, I’m not staying on it. Period.
I can almost taste the mental freedom and it will taste delicious.
This morning I met with my neurologist to confirm if my epilepsy has returned.
For this to make better sense, we need to go back to 1975 where Lisa, age 3, has a grand mal seizure. Over the course of the following decade, we would head to Detroit Children’s Hospital, where I was poked, prodded, and EEG’d to death to see what was the status of my brain. Drugs were taken, phenobarbital, mebaral, and lord knows what else. It is during this time it is discovered I’m allergic to the aforementioned drugs as well as penicillin.
Sometime in 1982 or 1983, the visits stop and I’m declared cured? Better? Healthy? Something? All I know is that at the age of 11 or 12, there are no more drugs or visits to Detroit’s Children’s Hospital.
In the later years, the stigma of being epileptic follows me like a lost dog. Some of my medical records have it listed and if it is missed in any kind of interview, it comes up with my drug allergies (“Why are you allergic to anti-seizure medications?” “I had seizures when I was a child.” “This could complicate things.).
It’s a shadowy grey area. Am I epileptic? Am I not? How much do I disclose when asked and do I make mention of this at all to anyone – employers, lovers, friends?
Over the years, I disclosed on when necessary and when warranted.
I did not have any seizures, that I can recall, in the intervening years.. That changed a few years ago, long before I started any of my second round of bipolar drugs, I had two of what I termed as seizure within six months of each other. One when walking through a tunnel in a fun house that had the pulsating lights and the second when watching the Kanye West video for “All of the Light”1 .
This was in late 2011 and early 2012.
When I had the first ankle surgery in June 2012 and the follow up surgery in January 2013, the triggering EPILEPTIC on my medical history was potentially problematic with anesthesiologist.2 And it was because of this that I decided to finally make an appointment with neurologist this spring, but there was nothing available for nearly six months.
Which brings us to today. I was so nervous, I showed up 25 minutes early.
I walked Dr. T. through all of my issues, matters, and concerns. After the interview, Dr. T. then put me through a series of neurological tests, which some of them made me giggle. After the tests were done, Dr. T. explained that he believes I did have epilepsy when I was younger, for there is a type where it starts out in very youngs kids and as you age, it starts to dissipate. By the time you’re late teens / early 20s, the epilepsy is gone and typically never comes back. He thinks this is what I had.
But do I have epilepsy now? Unknown. What he does think is what I thought to be seizures were actually migraines triggered by stress or other factors. Since I did not smell anything or get auras or get a build up, then I never associated with what was going on in my brain, in addition to the brain freezes (tremors, sometimes loss of feeling, sense of deja vu). I never thought of them as being migraines. This was news to me. When I told Dr. T. I didn’t take drugs for my headaches, he seemed incredulous.
What’s next? EEG to confirm the epilepsy (or not). That will be good times!
The most interesting thing out of this whole experience today was the discovery that phenobarbital and mebaral cause bone density problems. I have bones like a 90 year old, and they are so fragile at my first ankle surgery in 1994, they were surprised I had not broken anything before that. So drugs make my bones brittle, I have a double fracture in my right ankle, which then sets in arthritis that is the worst my orthopedic surgeon has ever seen.
It’s all goddamned connected.
Dr. T. is also ordering a bone density test and then depending on the results, vitamin therapy will be applied.
Can I get a new brain please?
This day in Lisa-Universe in:
1. The video was tagged by Epilepsy Action to potentially trigger seizures and I ignored the warning.
2. My neurologist says this is a teaching moment – anesthesia does not trigger seizures so riling me up before the surgery was unnecessary.