happy to report that i'm definitely feeling those brainwaves rewiring....more and more every day. it's amazing what just a little extra electrical activity can do, y'all! even just yesterday, i was having trouble remembering little details of the weekend....ok, maybe not little details....things like "we went to target this weekend?" or even plans i had made with my wonderful mother in law (i'm so sorry julie!! thank you for being patient with me...). ouch. but every day gets better....and noticeably so.....which is so very encouraging.
i met with my neurologist yesterday for our first post hospital visit ~ and a very encouraging one at that. she's completely awesome and while i'd prefer to not be having seizures, i'm so grateful to be in her care. i wish i had an easy answer for all of this but i will try and explain what is going on as simply as we are able to understand it right now. first things first, my brain is "beautiful".....her words, not mine.....so this doesn't count as bragging ;) ok well maybe just a little, ha! all kidding aside, the take home point here is that there is nothing amiss structurally (read :: NO brain tumor). i'll be honest when i say that while i don't remember much about my initial moments in the ER...i do have a crystal clear recollection of the thought "well, isn't this ironic. i'm about to start fellowship in hematology/oncology in 2 months and they are going to tell me i have a big brain tumor." huge sigh of relief. there was some swelling in the hippocampus, the part of the brain responsible for memory formation, which was reactive to having had the seizures.....and actually really REALLY interesting if you take into account 1) the deja vu feelings i was having beforehand and 2) the slowly improving problems with memory i've had after the fact. {see, i told you i was getting back to my old dorky self!} that swelling will go away completely with time and there shouldn't be any residual problems. she believes that my feelings of deja vu were an "aura" or sort of a pre-seizure warning.....which is actually kind of a blessing in the sense that more likely than not, should this ever happen again (and hopefully it won't!) i'll probably have a little forewarning. but again, that's not going to be an issue, right brain?? ;) she reduced my medication even more and this makes my body very happy. the initial dose i was sent home on was just too much.....i felt swimmy and drunk and completely not myself. part of that was just the recovery process but a lot of it was the medication. i feel like me again on this new dose and that makes me happy!
now....as for an easy answer to WHY this is all going down....we don't have a good clear one right now. what i can share is that she thinks that the seizures are metabolic in nature....meaning they are a reaction to an underlying metabolic issue. i was born with a bizzare and otherwise uncharacterized problem in the way that my kidney's filter and absorb phosphorus.....one of the key elements for bone formation. the metabolism of phosphorus is actually kind of complicated and related to the metabolism of calcium and vitamin D and WAY beyond what i'm going to get into on the blog (it's also boring...no offense to my budding endocrinology friends). the point is that my phosphorus has always been low, i have a great doctor who takes care of me and watches it, and it's never ever given me any problems. i took replacements as a little kid and we made the decision for me to take supplements during my pregnancies to ensure that both kids got all the nutrition they needed but otherwise it's been a non-entity in my life. until now, maybe? there was evidence of "metabolic bone disease" on my MRI....basically that my skull bones looked older than they should.....and my neurologist thinks that the easiest explanation (if there is one!) is that this is all somehow tied into this bizarre phosphorus problem i have. my kidney doctor actually saw me in the hospital and gave me IV phosphorus replacement.....and he is literally one of the most brilliant doctors i know. he's nerdy and brilliant and has a detective's mind.....and is totally on the case ;)
in terms of the logistics....i can't drive for 6 months. i'm not able to participate in rotations that require me to work overnights due to the concern that sleep deprivation did play some role and could increase my changes of having another seizure. my program, both my current medicine program and my upcoming heme/onc program, know about what happened and have been supportive and uplifting. i'm on schedule to finish on time and start my fellowship as planned ~ but have to promise to pay better attention to my body....staying hydrated, taking my vitamins, generally caring for myself. any mom (and doctor!) will tell you that this is more difficult than it sounds ;) that half marathon i was training for is now off the table for a while.....maybe even forever. i can exercise but have to do so with a little more moderation and attention to my hydration. simple stuff, really.
now to the part where i get emotional. my family blows me away. i sort of fumble to come up with the words that actually convey how safe and loved they make me feel....everyday really....but especially in times like these. i am overcome with gratitude and as i type the tears are streaming down my face. it's overwhelming and beautiful and i am speechless. my friends have rallied and reminded me what true friendship really is and have inspired me to be a better friend in return. every single phonecall, every email, each text message....all your words of encouragement have meant the world to me. the way the specialists went out of their way to see me in the hospital and the kindness the nurses showed to me.....it was all just so touching. as i recover and travel through this time.....the sentiment i'm left with is a happy one. i'm thankful for my health. i'm thankful for the people i love and who love me. and i'm reminded how incredibly lucky i am in this life.
god works in mysterious ways, my friends. i believe that sometimes things happen, big things like this, to serve as reminders. that drama at work? that petty rift with a friend? none of it matters. none of it. life is too short to be anything but grateful. out of a terrifying experience comes a sense of peace and i hope i can always remember the perspective this moment has given to me. here's to making all of my moments more purposeful and full of gratitude.
to my amazing family and dear friends....i love you more than you can ever know. thank you from the bottom of my heart.
1 comments:
a moving post
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