Finally, a post NOT related to my brain...

Ok, so I figured I've babbled on and on and on about my health issues until anyone who reads this (who is actually no one) would be totally bored. Instead, today I'm going to talk about something much more fun and lighthearted...

I got into 3 of the 4 classes I wanted for fall semester!!! Yay!!! I'm taking Theory and Method in the study of religion, Martyrdom Then and Now, Buddhism and the Supernatural (YAY!!!), and the Andes. The Andes wasn't my first choice, it was a backup, but whatever, I can deal with it. I like the Andes, I mean really, I went to Peru, I've been to Macchu Picchu. It's fuckin awesome. I think I can deal with it. But yah, I'm super stoked for my schedule, and the most awesome part is that it's a 3 day a week schedule. I have class all day Tuesday, a wednesday night class, and all day Thursday. That gives me 4 consecutive days with which to work and get shit done. Who knows, maybe I can even get a job. How awesome would that be?! I'm sooooo excited!!!!

My only concern is that the lady who registered for me didn't specify which professor I have for my Martyrdom class. I like both profs who are teaching it, but I already have Cooey for Theory and Method, so I'm hoping that I'm registered for Martyrdom with Drake, because having two classes with Cooey would be killer; advisor or not, she's a tough prof, especially with the amount of writing she assigned for Love and Death last semester. Anyway, regardless, I'm excited. Especially since I got into the Buddhism class... *sigh* yay.... Ok, tell me to snap out of it, seriously.

So that's the update on my class schedule for next year! Yay! Now Shawn and I just need to get a house. Shawn says he called the realtor and told her to put it on "the back burner" because my "health concerns are more important than a house right now". Well, be that as it may, I'm sick of living in my parent's basement, and now that I am registered for classes in the fall, I want a place to live, damnit! Oh well, I guess we need to slow down and take it one step at a time.

Anyway, if anyone reads this, thanks for reading, and putting up with my rollercoaster personality. One minute I'll be bitching and moaning about my brain, relationship, and friendship issues, and the next I'll be screaming and jumping up and down over a couple classes. Thanks for listening, and I'm sure I'll post again later today, I have a few more things I want to talk about, I just need to find the words.

My F*ed Up Brain: Part 5

Part 5 of the Saga: Last Night's Incident.

So yesterday, I had a few minor episodes of lightheadedness, the mild headache, but nothing to be worried about. Then yesterday evening, Shawn and I were headed home from the grocery store and the more severe kind occurred, with the need to stabilize myself and I could feel my pulse in my fingertips. I started to cry, because I cry a lot, especially when this sort of thing happens because I still haven't figured out why or what's causing it. It's freaking me out. But, we get home, and I'm fine. We have dinner and continue on our merry way.

Later, at about 8:30, I'm in my room, and it happens again. I'm really freaked out, so I go upstairs where Shawn and my Mom are in the living room. I sit with them and cry a little, wait for it to go away, and return to my room. It's odd that it happened more than once in a day, especially after it had been so good for a few weeks.

Finally, about 9:30 or 10, I'm watching a movie (the Italian Job, I highly recommend it), and I feel lightheaded again, but this was the worst it had been in a long time. I was just about to go find Shawn when he came downstairs. I told him about it, and I'm crying by now of course, because I'm scared and freaked out and I don't know why this keeps happening. 3 times in one day is not normal, even for me. This episode was the worst of them all- it was more severe, I felt like I was going to be sick to my stomach (although that may have been from the crying), and I felt throbby and lightheaded for several minutes. Shawn ran upstairs and woke up my parents, who came down to see what was wrong. From what they tell me, everything that happened last night was the same as when I was having seizures in the hospital, except that I remember it clearly, and there was no obvious twitching involved. My eyes were wide open, pupils dilated, I was scared and confused, crying, "I don't feel good" "my head feels funny" "I can't explain it" and so on and so forth. After half an hour of discussion, we determined it was not necessary to rush me to the nearest ER, (thank God, I'm sick of doctors), but instead wait until morning and then call the Mayo.

Shawn and my Dad got up early and called, but my main doctor is out all week, so we left several messages and have been waiting for someone to return our calls. My dad is hoping to get me an appointment in the next few days, if at all possible. Hopefully, we'll be able to get this all figured out, and I will be well and healthy again.

- Update- I have several appointments at the Mayo later this week. I have an MRI scheduled for Wednesday afternoon, an EEG Thursday morning, and a check up and follow up with a doctor Thursday afternoon. Turns out the one week that I have issues is the week that almost the whole neurology department is gone at some conference, just my luck eh? Anyway, it should be an interesting experience. Wish me luck!

My F*ed Up Brain: Part 4

Ugh. I hate this. It's never ending. Let me do my best to keep you informed.

Part 4 of the Saga: St. Cloud Doctor Visit.

Ok, so for a couple months, I've been feeling much much better, but at the same time, I've been getting really lightheaded. I feel lightheaded and feel like I need to sit down or stabilize myself. Sometimes I feel throbbing sensations in my hands and legs, as though I can feel my pulse through my fingers. This situation usually passes within a few minutes, and I have noticed a correlation between external stimuli and this reaction. For example, if I am in a place with a lot of conflicting noises, lots of visual stimuli such as lights or shiny things, or if I'm highly emotional or stressed, this is more likely to happen to me. So, after dealing with this for quite awhile, Shawn and I made a doctor's appointment with my family doctor in St. Cloud.

Of course, as soon as we make the appointment, my symptoms lessen, and the throbbing lightheadedness happens much less frequently. Most of the time it is reduced to nothing more than a mild headache and bit of lightheadedness that passes within a minute. So anyway, I go to the doctor and explain everything, pretty much exactly as I have explained it here. Shawn and I thought that maybe it was a side effect of my meds, but the doctor didn't think that was likely, considering I had already been on my meds for at least a month or two before any of this started happening. His theory was that it was simply a psychological reaction to stress. He said there was a tiny possibility of my electrolyte levels being screwed up, because that happens occasionally to people with severe head trauma or people who have been in comas, but that was highly unlikely. Nonetheless, he ran a blood test just in case. Well, it turns out my electrolyte levels were normal, except that my blood sugar was low. Normally, this would not be a problem, but considering I had eaten a good breakfast (eggs, toast, and juice) 2 hours prior to my appointment, it was a little confusing. The doctor told me to eat more frequently and make sure I'm getting enough complex carbohydrates in my system.

Now, my assumption is that the doctor assumes that the lightheadedness is caused by the low blood sugar, which I deem highly unlikely. I have had blood sugar issues my whole life. I know what it feels like when I have low blood sugar, my brain automatically kicks in and says "you need to eat, now" and I do. And I can tell you, the lightheadedness associated with low blood sugar is a very different kind of lightheadedness than I have been experiencing lately. So, that in mind, the visit to St. Cloud did little or nothing to help.

Torn

The loneliness,
The desperation,
is overwhelming.
I can't do it anymore.
I can't take it.
I can't suppress the tears.

I am alone.
It's tearing me apart.
I know not who I am,
at least not all of me.

There are moments
throughout every day
when I see that other person
and I feel torn in two,
and I don't know or understand
what's happening to me.

What is happening to me?
Why does my head feel so strange?
Why do I feel so emotional?
Who is this other person,
this other part of myself
that I know
and understand
but cannot grasp
and cannot recognize?

She is there
barely beyond my reach.
I am scared
because I do not know her,
and I do not trust her,
but I know that I must
discover her
in order to feel complete,
in order to feel whole again.

I am scared,
but I cannot change my course
I must know what this is.
And every time it happens
I try and discover the truth
but it always slips away,
and I am left with only myself,
frustrated and confused,
and lonely again.

My F*ed Up Brain: Part 3

April 3rd, 2009: Frustrations with Forgetting.

In the last 3 months, I've realized that the memory loss I sustained during my illness is more extensive than I had previously imagined. I woke up in the hospital around Christmas and realized I had forgotten at least a month's worth of time- completely erased, blank slate, no idea what happened. In the time since then, I've realized and learned that my memory loss goes way further back than that, in fact, I dont really know how far back it goes, because by the time I start remembering things again, I don't know whether I've forgotten them because of my illness, or whether I've forgotten them simply because it was a long time ago (my memory has never been great to start with).

My favorite way of explaining the situation is this: Videos are made up of millions of still photographs moving in quick succession. Of the video of my life from 2008, I have a few handfuls of photos as well as several small video clips, audio not included. The memory I have is entirely visual and emotional. The entire soundtrack to my life in 2008 is gone. As far as emotional memory, I know things, and I know how I feel about things without remembering the specific things themselves. For example: I have a book. I know that I read the book. I even know which class I read the book for, but I can't remember what the book is about. I can't remember reading, writing about, or discussing the book. If I re-read the book, it is still as surprising as the first time, but throughout it all, I still know that I liked the book.

In short, I know things without knowing how I know them. I don't know things that I know I should know. I'm constantly trying to remember things, and in doing so, I look for similarities or familiarity where there is none. I go through an area where I know things should be familiar and they're not. It's intensely frustrating.

I don't REMEMBER much of the last year of my life. That doesn't mean I can't tell you about it, but it does mean that I can only tell you what I myself have been told. I have re-learned a lot of things. My fiance tells me things, tells me how my life was. My parents tell me things, and my friends tell me things. I have pictures and diary entries and facebook posts of things that I did, but just because I have re-learned them enough to pass on the information, it doesn't mean that I actually remember. For all I know, my friends and family could have completely falsified all the information I've been told over the last 3 months, and I wouldn't know any better, but I trust, because they love me, that that's not the case.

Now for the frustrating part. I try and explain things to people, as I have just done. I have frequent conversations about the experience of losing one's memory. The truth is though, that it is impossible to understand unless you've experienced it. Amnesia isn't the same sort of memory loss as just forgetting something because it was a long time ago. If you forgot an event because it was 5 years ago, and someone tells you about it, you're likely going to recall it after some prompting, or have a vague memory of it, or even just remember that it was true without having memory of the event itself. Amnesia is different. If my fiance tells me I did something, I have to trust him. Most of the time, there is no partial recall, no prompting, no vague memory, no underlying truth. It's just plain gone. Sometimes, on a rare occasion, there will be a little bit of memory, a detail, or a still picture that pops into mind. For example: he told me that we bought new furniture in September, right before the bedbug stuff happened. With that bit of prompting, I knew it was brown, and I could almost picture it in my head. That tiny bit of memory was still there, but I never would have discovered it on my own. Scenarios like that used to happen quite a bit actually, and then I got used to it. I started assuming that things would all be like that, and if I asked enough questions, I could remember stuff eventually. I was wrong. A lot of things are just plain gone, and no amount of prompting will bring them back.

Sometimes people ask me if I would want to remember. From the sounds of it, my life wasn't in the greatest shape anyway, and I was pretty unhappy. Between the bedbug and apartment fiasco, and schoolwork kicking my ass, as well as trying to maintain a long-distance-relationship under all that stress, people ask if I want to remember. That's one of the most frustrating things. YES, I want to remember. Just because something was hard doesn't mean that erasing it is going to be any easier. In fact, knowing all that I dealt with and knowing now that I "get off easy" by not having to deal with it, doesn't make things better, it makes it worse. It even makes me feel guilty that I'm "lucky" enough to not remember.

But what these same people don't understand is that amnesia is not some sort of happy oblivion. You don't wake up and go about your life believing that it's the same day over and over and over again (think of the movie 50 First Dates). You don't wake up and have people treat you the same way as they did when you fell asleep. It's not like starting over. It's not like going backwards and getting to redo things. It's not like that at all.

I had one friend, who's own life has been notoriously difficult, once tell me that I had the "luxury of forgetting". Let me tell you something, forgetting is not a luxury. It is not getting to start over. It's not getting to pick up where you left off. It's not getting a second chance. It's not getting a blank slate. Everyone around you, everything around you, has moved on. Everything has changed. People have changed. People's opinions have changed. Things have changed. The world has changed. You have changed. Amnesia isn't going back in time and getting to relive things and relearn things and redo things that you messed up- it's waking up and being completely and totally terrified. It's having no idea where you are, when you are, what things are going on around you. It's having zero knowledge of what you've done, or where you've been, or how long you've been out of it. It's waking up surrounded by a fog; you're completely encased in uncertainty and fear.

Luckily for me, I have re-learned most of my life. Between my family and friends telling me things, the still pictures I have in my head, and the underlying instinctual and emotional knowledge I have of some facts, I have pieced together my life in the year 2008. Some days, things still catch me off guard, but for the most part, I'm fine. The hardest part is trying to explain to people what it's like to not remember. Trying to explain to people that it's not a "clean slate" a "do-over" or a "luxury". It's just plain gone.

My F*ed Up Brain: Part 2

Written by me January 16th, after my first follow-up appointment at the Mayo:

All right, well, pretty much everyone knows the story, but here's the latest news.

Medically: I am doing very well. As was mentioned in my previous note(s), I spent a week in the local hospital, a week in the Mayo, and did 5 days of outpatient IV treatments at home. I am still doing those once a week, and yesterday I had a follow-up appointment at the Mayo, where I was informed that my bloodwork came back totally normal, my EEG (brainwave stuff) seemed normal, but we're still waiting for results. Basically, I have not had any more seizures and my memory has been improving daily since the 30th when I was discharged from the Mayo. So, on that note, I'm doing very well, and very little permanent damage done.I say very little because the more I talk to people and the more I learn, the more I realize how much of my life has been erased. When I said before that I remember nothing between thanksgiving and christmas, I'm beginning to realize that I forgot most of last fall, not just from thanksgiving onward. I don't remember my birthday, or voting, or halloween. I knew and was not surprised that my fiance and I live in a different apartment then we did this summer, but I have no recollection of actually moving stuff in october. I have looked at my school stuff- books and papers- and don't remember any of it, except that I can point out which books I read for which classes and I remember the very first book I read all semester, but I can't tell you what it's about. I recently re-read a book that I remember that I liked, but I continued to be surprised at the end as much as I was the first time I read it. At the very least, october, november, and december are gone. All spring and summer are sketchy. I'm still really emotional, overwhelmed, and stressed.

Bedbug Bullshit:

This summer we had bedbugs in our lovely (note the sarcasm) apartment. I had red itchy welts all summer that we thought were some sort of allergic reaction, but after I left for school, my fiance discovered that we had an infestation of bedbugs in our apartment. We quarantined everything for 6 weeks while it was "treated" only to find more LIVING bugs at the end of that time. We re-quarantined everything for another 6 weeks for another treatment, in the meantime moving into another apartment in the same complex. When I got out of the hospital at the end of December, the 6 weeks were up, and we moved all our stuff from the old apartment to the new one. Then, this past Wednesday, I told my fiance I was feeling itchy, and it was probably just from the freezing winter weather and dry skin, but nonetheless we examined our bedroom.... only to find another bedbug, alive. The whole situation is ridiculous. Clearly, whatever they did, twice before, to "treat" and rid the apartment(s) of bedbugs didn't work. So we approached management, informed them of the problem, and they let us out of our lease. For the past three days and for an unknown period of time to come, we are living with my parents. We are throwing out most of our furniture because it's not worth the risk of bringing bugs with us anywhere else we go, and our clothes and belongings can be treated with heat/cold/and chemicals, depending on the item. Current and Future Plans: Like I said, we're temporarily living with my parents. My fiance and I are both taking this semester off of school in order to re-group and get our lives back in order. He is still working every day, hopefully full-time now that he's not in school. I have officially taken a leave of absence from school, due to medical stuff, and fully intend on heading back in September. He also intends on returning to school in the fall. Various plans for school and living situations are being discussed and considered, both locally and the Cities, but nothing is certain, and for now we're just worried about getting all our stuff out of the buggy apartment by Monday and getting paperwork done.

In short: Life has been pretty rough, but things are looking up *knock on wood* and we appreciate all the support we've gotten from friends and family. Thanks!

My F*ed up Brain

Today is January 4th, and I’m sure you all have read about my situation or have heard through family and friends what has been going on with me for almost a month now. I figured now that I am up and capable, I should share what it’s been like for me, and it hasn’t been easy.

For starters, I don’t remember anything from around Thanksgiving until Christmas Eve, and from then until now my memory has improved steadily until I feel almost completely normal. However, it is unlikely that I will ever regain memory of this 3 week time-frame; it has simply been erased from my brain.

As you probably know, the medical story is this: I finished finals at school and moved home, living in my apartment with my fiance. At the time, I had the flu, or at least some generic flu-like virus. After about a week, I started losing bits of my memory, and having anxiety attacks, confusion, and hallucinations. One day, I had a seizure in our apartment, my fiance called 911, and I was rushed to the ER. I spent a week in the local hospital, and then transferred to St. Mary’s in Rochester, aka, the Mayo. I was diagnosed with “Limbic Encephalitis” which means that my brain was inflamed, causing the seizures and memory loss. The most common cause of this is cancer, but thankfully, all cancer screenings came back negative. The best theory the doctors have as to what caused my condition is that the flu that I had shared some antibodies with my brain, and when my immune system fought the flu, it also began to attack my brain because of these shared antibodies. There is no proof that this is true, but it is the most likely theory, and from what has been explained to me, it makes sense. Anyway, they put me on lots of meds, steroids to control the inflammation of my brain and anti-seizure meds, and began to flush the antibodies from my system using IV treatments. I was discharged from the Mayo on the 30th, did five days of IV treatments at home, and from now on will have various follow-up appointments and treatments for several months. I remain on anti-seizure meds for several months and am not allowed to drive. Close supervision is recommended for the first week or two to make sure I am capable of caring for myself and not burning the house down.

So that’s the medical story. The truth is that a month of my life is gone- wiped from my memory completely and unlikely to return. All memories from this summer and fall are sketchy, and may or may not return with prompting. I know that I finished my classes and finals at school, but do not recollect anything I read, learned, or wrote during that time period. I have tried reading papers or books that I know I read during my classes, but the information I learned from them is gone. Geographical information is also slightly off- I occasionally don’t remember where something is or can’t picture how something looks in my head- although this gets better every day. My job that I had over the summer closed, and I have no recollection of either asking to return (of which I did, and then I was informed that they were closing) or of the business closing. Luckily, long term memories don’t seem to be affected; I still know people’s names, birthdays, and things that have been in my life for more than a year. I’m still hopeful that some memories from this fall will return with time.

It has been a strange and surreal experience to wake up in a hospital after 3 weeks and not have any memory of that time, or of the medical conditions such as seizures. What I do know is that I have an immense support system of friends and family who have demonstrated every day how much I am loved and cared for, and that means more to me than anyone can ever know. My parents and fiance never left my side during my hospital stay, my relatives and friends all came to visit (whether I remember them or not, I know they were there), and I received cards, well-wishes, and prayers from friends and strangers. I may not remember the last month of my life, but I do know that I was well cared for and very much loved.

What I know now is that I have more medical things to follow through with, I’m not allowed to drive myself anywhere for six months, and I will almost certainly not be returning this coming semester for school- it’s just too soon and too much to handle. I still have headaches, dizzy spells, and parts of my memory may be gone forever. I will continue living with my fiance, hopefully find a job, and work on getting my life (both medical and emotional) back on track for the next several months.

Although I don’t remember what has happened, and I don’t know what will happen, I do know that I have never felt more loved than I do now. I thank everyone for their thoughts and support, and I hope to keep in touch with all of you in the future. Thank you for everything, and I wish all of you a happy new year.