Scariest day ever is officially here. Not sure how to feel sitting in the car on the way to surgery I can’t say it’s a feeling I have ever experienced. Deep down I know it has to happen, has been a long time coming, I am as prepared as I’ll ever be, I have an amazing medical team and support system in place and look forward to starting life after seizures. I just can’t shake this logical fear of walking into the unknown with a bagful (yes not a handful) of questions. I wish I had written more, I wish I had written it all down, I wish I had didn’t have to worry about writing anything. Then I realize I’m actually lucky it was me. I’m extremely emotional and would probably give a limb for anyone I love; definitely would not be ok sitting this out on the sidelines for someone else so I’m glad it was me not them. I’m glad I have been blessed with an amazing life, friends, family, and doctors. I’m ready.
-Vane
Archive | May 2014
FollowLife with more seizures
After the first seizure we were all hopeful that it was a one time episode. I always feared a second, or third but was grateful for those days I had without more. I would never have thought that this many years later I would be struggling to remember how many exactly there were, and looking back through my piles of hospital forms, CD’s and discharge papers to pin point dates. I suppose I should be glad that I can identify them so easily, count them on one hand and not losing track because of the overwhelming number of them. That I am.
The most memorable (aside from #1 because of sheer shock value) was 02/19/2011. Mauricio and I were finally getting away! A much needed vacation after quick some time seizure free. Life felt like it was back to normal and heading down the right path. We planned a long weekend up to Chicago to visit with Natalie that was at Purdue finishing up vet school residency. Nat and her friend drove over from Indy to meet us as the Westin on the river (awesome hotel perks thanks to Mauricio’s dad). We had an eventful morning trying to get out of Miami International Airport and into Chicago which included 1 missed flight, 2 standby seats on the next flight, a hunt at Chicago’s O’Hare Airport for our luggage, figuring out how the heck to get a train to downtown, asking some random stranger on the street how to find our hotel and freezing our butts off to get settled. Phew. Once settled we were able to do some nice site seeing and more freezing from the observatory deck which made for awesome pictures at night.
The next day was smoother, started with chocolate churros (OMG DELISH) at XOCO, crazy good burgers at Kuma’s and lots more site seeing (which worked out for me as a photo-holic). Natalie finally got there in time for a late night dinner and drink (yes single and not the strong vacation kind) then call it a night for the early start the next day. We did the typical museum row tours and went to meet the T-Rex (because who would hear Natalie if we didn’t) then went for some famous deep dish. The place was packed and wait was long but oh so worth it! Lou Malnati’s yum!!
Everyone was ready to call it a night but Tabitha Tumor and my seizure’s had a very different plan. Instead of relaxing they making lovely memories with my honey they basically gave us both PTSD. Once again, a scary visit from paramedics, bloody sheets (from biting my tongue), memory loss, being escorted through hidden elevators and secret hallways in the hotel (which was actually pretty cool) to the hospital. At this point, Natalie had called my neurologist in Miami (ON HIS CELLPHONE — which he answered — as if I wasn’t embarrassed enough!) to get instructions. We made a quick ER visit to get the all clear then cabbed it back to the hotel (which treated us AMAZINGLY!! Thank you thank you thank you to Sean Broderick, security and Debi Quigle, front desk for taking care of our beautiful room and morning after craziness) for some much needed sleep. However, I doubt Mauricio got much sleep after the last attempt at that.
The next day was rough. Tired, cold PLUS a sore cut up tongue was NOT fun. Definitely put a damper on the day but gives us a reason to plan a Chicago Part II trip in the future to really finish what we started there! Can’t wait to go back!
Luckily (and baffling) all the MRI and follow up imaging when we returned showed NO CHANGE to Tabitha Tumor. Minor increase to anti-seizure meds and more follow up continued as true diagnosis evaded us. The plan to monitor closely and treat as seizures needed continued to be our best option.
Life with doctors
After that first seizure I dove into research and all the information doctors would give me. I landed an AMAZING team of doctors during my ER visit who are still with me today. I also received so many wonderful recommendations, second opinions and new referrals. Looking back I probably overdid it but regardless it was definitely a learning experience. Here are a few of those that have been seen along the way and my personal recommendations (in no particular order):
– Dr.Sergio Jaramillo (Neurologist at Baptist Hospital and Neuroscience Consultants Care Center I- Office 305-596-2080)
This guy has been a ROCK! Total superstar and wouldn’t change him for the world. Was assigned him in ER at seizure #1, was terrified by how young he looked (still impressed with how young he is) but definitely a perk. In addition to normal neuro appts, I’ve had 2 (or is it 3??) spinal tap/lumbar punctures done by him personally and would do it again. He is so personable, attentive, thorough and HONEST! His office staff is great, his assistant is AMAZING! I ended up taking my grandmother to see him when she started mentally declining and it was such a relief. Truly one of the greats.
– Dr.Vitaly Siomin (Neurosurgeon at Baptist Hospital – Office 305-271-6159)
There is something SO endearing about this man. He was assigned to me in ER at seizure #1, one of the newer surgeons at Baptist back then. Can’t say I have heard one negative thing about him through everyone I’ve seen. You can tell he absolutely loves what he does. He’s like an open book and feeds my inner need for more information. He has always been so amazingly patient, thorough, kind and understanding through my never ending questions. Deep down he has always been a supporter of learning and understanding what I am dealing with, wants me to see the MRI images and understand his suggestions. I do have to say I’m extremely addicted to the chocolate croissants at the Au Bon Pain cafe in the lobby of his building.
– Dr.Roberto Hero (Neurosurgeon at UM Miller school of Medicine/Jackson – Office 305-243-3245)
Managed to get an appointment with this rock star just a few days after seizure #1 through my boyfriends best friend (still owe him for that). He is definitely a wanted man. His resume and experience is just shocking and beyond words. I’ve definitely ridden a roller coaster of emotions with him. Every time I go see him I feel like I’m talking to my grandfather. Definitely a commanding presence and endless fountain of knowledge and experience. His clinic hours get very busy so I recommend taking the first appointment in the morning to beat the rush. There’s a cafeteria across the hall while you wait.
– Dr. Jacques Morcos (Neurosurgeon at UM/Jackson- Office 305-243-6190)
Recently saw him as a referral from a friend of a friend (who also happens to be a surgeon). WOW. This man was impressive. SOOOO detail oriented and has this very calm way about him. Amazing that with all the patients he had to see made me feel like the only one there. He was extremely honest and real with all the information provided. I do wish I would have met him before, not that I think it would’ve changed the outcome or team but possibly the amount of information through this point.
– Dr.Aizik Wolf (Saw at Doctor’s Hospital but recent conversations have told me he’s now at Larkin Hospital)
This guy is by far THE GAMMA KNIFE GUY. If you are not ready for intense discussions and decisions to be made, the quit while you’re ahead.
– Dr.Ronald Benveniste (Neuro-Oncologist at UM/Miller school of Medicine – Office 305-243-6946)
Referred twice by Dr.Heros for a stereotactic needle biopsy (which we declined). Very knowledgeable and patient (considering my declination and outward disapproval of his suggestions for MY case).
– Dr.Allan Jorge (Neurosurgeon at Consultants in Neurological Surgery – Office 786-517-8650)
Referred by my boss to assist in navigating the doctor path right after seizure #1. He focuses on spine so was not really an option for MY case but he was great in figuring out the politics, questions to ask and next steps when I was so overwhelmed.
– Dr. Milton Gaviria (Infectious Disease Physician – Office 305-595-4590)
Seen at the ER and follow up at his office after seizure #1. Due to the nature of the first seizure and lack of witnesses we ended up with a full workup of diseases to rule out (or in) possible diagnosis. Everything came back all clear so not much follow up continued with his office. Very polite and proper.
– Dr.Ann MacIntyre (Infectious Disease at Mercy Hospital – Office 305-858-6365)
Referred by my boyfriend who actually went to school with her brother and grew up knowing their family. She was adorable! Definitely not what I would expect from an infectious disease doctor (if you expect anything in particular). Was so attentive and personable. Did not hold back on doing everything possible to get a diagnosis or all clear. Literally wrote up a script for EVERY SINGLE test on the Quest Diagnostic check list PLUS an additional Rx. Was extremely thorough with results and explanations. Again, everything came back clear so not must follow up continued.
– Dr.Allan Friedman (Neurosurgeon at Duke – Office 919-681-6421)
Referred by multiple sources, one of which is a former patient who is doing AMAZING post-op. Yet another impressive resume and experienced surgeon. Did not actually see him or even get to making an appointment as I was happy with my medical team and already decided to move forward locally.
The list really does go on longer but these were pretty much the big players. I’m an open book if anyone needs more specifics, questions or referral information.
-Vane
Friend for LIFE!
Memorial day week my entire life has had a standing appointment, one I wouldn’t change for anything. Growing up it did sometimes feel almost like a burden when my friends had fun plans for the long weekend and I couldn’t join. The older I got the more I realized that I was lucky to have this “burden”. Today is my big sisters birthday!!!! Today she is officially in her 30s. There is no more difference in age than any other year but now I can officially say she’s in her 30’s and I’m still in my 20s!!
When people meet us they’re always
shocked by the fact that were only 11 months apart. Irish twins I suppose? For us it just meant being dressed alike, called the wrong name, and sharing everything our entire childhood. Looking back now I realize that I have something special. Someone who knows every single crazy family story or inside joke not because I told it but because she was right there with me.
Even for those times we were apart I knew she was just a call away. I’ve had the honor and privilege to watch her graduate not just high school or college but also vet school. My live in pet doctor. I get to hear all her crazy stories about animal crisis’ what walks into be treated and saved. I have my sounding board of opinions and personal fashion consultant living right next door. Someone to stand by me and get lectured by my parents (even now). Someone to know what I’m thinking without needing any words (as proven by the fact that we not knowingly got each other the same exact birthday card this year!!)
While she may not be excited about the new decade change I am! It’s celebrating one more year of having my family partner in crime, tag team on my parents, Irish twin, school buddy, and forever friend. Happy birthday to the best (and coincidentally only) big sister!! Xoxo
-Vane
Work Life!
Last day of official work at the office before surgery leave so I figured this post was the most appropriate:
I’ve worked around healthcare for elders for 11 years already. Granted I started in data entry typing away in a back office with a group of my friends when I was just a senior in high school, I would hardly consider that work. I really think I won the jackpot with my job before I understood the market I worked in. Who gets to go from school to hanging out with their friends typing? Then imagine having to tell your boss that you’re going away to college at UF in a few short months and him actually trying to help you keep a job… Well I did! While my college friends were taking out loans, using scholarship money or working wherever they could to get spare cash I was working from the comfort of my apartment. I wasn’t doing ho-hum entry anymore, no sir, working directly for the big guy doing special projects. Luckily by working with him on these projects I started learning the more business side of our jobs; mix that with the fact that I was checking other peoples work that totally fed my OCD detail oriented side and I was in heaven. I ended up moving up and became a manager when I got back from UF and kept studying at FIU (more on that later on family & life choices). Eventually I graduated with my bachelors in English, a minor in Education and another minor in Psychology ready to be a MDCPS high school English teacher. Then reality hit… Wait a real job? With all these rules? I couldn’t just take a day off? AND They were cutting benefits? Laying off teachers? Last one in, first one out? And for how much?! Oh nonono. Time for a change of plans. Panic officially set in.
Luckily (again) for me that my job was still coming through. I got a promotion to become a department manager and start doing the trainings for anyone using the software system I had been working on for almost 5 years at that point. Seriously?! Does it get any better? Well I think it does. I eventually left that company (after plenty of company trainings and creating procedure manuals up to my knees). Oddly enough I left to work directly for my first boss (yes again as we got separated through all the promotions and company restructuring) at his company, going back to my spoiled ways.
Little did I know that I was going to be thrown a major curve ball and into the deep end. This was not at all what I had been doing, I was not prepared and I was alone at clients… Or so I thought. How am I supposed to show people how to do their jobs better, more efficiently? Where are the instructions for planning computer system changes with a programmer that may save a company a whole week of time and money? When did I become the go to person for making business plan decisions for clients and affecting more than myself? Somewhere along I absorbed enough to make it work. I have worked with some of the most passionate and stubborn, knowledgeable and frustrating, crazy and endearing people at the clients I’ve been with. I learned so much more about long-term care, the aging community, non-profit agencies, business planning, project management, government services, and people than I would ever have imagined.
I also never would’ve imagined that the data entry job I took almost 11 years ago would take me down this path. Much less become my solace, my comfort zone, my confidence builder, and my frustrating relaxation in the face of utter personal chaos. I didn’t (and still don’t really) think jobs and bosses like mine exist, where bottom line and dollars almost took a back seat to health, happiness and safety. I’m inexplicably grateful. I’m lucky to say I have invested a lot of myself and take personal ownership in my job but the payoff is immeasurable.
-Vane
Life with Seizures
Have you ever woken up in the middle of a dream startled not knowing what day or time it is only to realize it wasn’t a dream? Have you ever laid in a completely dark room with the worst insomnia but can’t sleep over the sound of your own breathing and heartbeat? Have you ever struggled to find a word on the tip of your tongue while your brain yells at you loudly that you should know this? Have you ever had what you thought was déjà vu of something so bad you keep hoping it’s only déjà vu and not actually happening again? Have you ever stared at the people you love asking who they are, what your birthday is, where you are and not be able to answer? Have you ever been so mad at yourself and felt so utterly helpless that the only thing you can do is cry? I have.
All of the above. Yes.
Multiple times. yes.
Unfortunately yes.
Every time I’ve had a seizure in my sleep, yes.
Luckily always only in my sleep, yes.
Thankfully never alone, YES.
August 16 2009. I was supposed to have breakfast with a friend. A quiet Sunday breakfast to catch up. Unfortunately my body was in the middle of crazy work schedule time so I was up early, checked my cell phone clock happy to catch a few more minutes to snooze. Next thing I know I’m laying in my room surrounded by a bunch of strangers (which I not so quickly realized were paramedics) with my sisters, dad and boyfriend standing at the door staring. The look on their faces is etched into memory. Sheer panic and terror. Tears streaming down my little sisters face as she carried our puppy. The next few minutes and hours are fuzzy, almost a blur. I later find out that this is just the beginning of something that happens in movies and books not real life. Except it is real and it’s mine, a brain tumor? Me?
Life lines
Fear is false evidence appearing real.
You bring about what you think about.
I know them all, doesn’t everyone? I can recite them in my dreams. Especially in light of everything going on my inventory of positive catch phrases and motivational one-liners is overflowing. My pink bubble definitely helped build the stockpile before I really needed them. I’m thankful to my ‘blood running pink’ for so long, I can’t imagine trying to change my mentality in the midst of now, uncertain chaos.
-Vane
Real Life
What’s meant to be will be.
Hope for the best, prepare for the worst.
Deep down I’m a realist. Some have recently called it ‘fatalistic’ to which I strongly disagree. I do think we are all drawn a path way before we are aware of it. I feel we all have personality traits that are so ingrained in who we are that no nurture or training can curb them. I believe in things being “too coincidental” and “unavoidable timing”. That train of thought can take a very ugly turn when things are looking less than rainbows and butterflies. But then, was it meant to?? Is it really fatalist to know the odds and numbers are not in someone’s favor, in knowing all the possible pitfalls or is it mental preparation by the overly prepared to fight like hell to dig out from that hole instead if being caught off guard in the quicksand?
-Vane
Life info
The more you know the more you grow.
Knowledge is power.
I’m an information junkie. A bookworm, a never-ending list of questions (just ask my doctors), Google is my best friend (and no not just my sister which someone nicknamed “Google”). I’ve always had this calling to words and writing, I just can’t get enough. I want answers and explanations. “Because” is never enough. This whole experience has only fed into that and broadened my soapbox of questioning all.
-Vane
It’s my life
It’s always the quiet ones.
Nice guys finish last.
Growing up many times I was called naive, innocent and unaware. Looking back they may have been right in some cases but boy oh boy were they wrong in others. I’m not proud of everything I’ve done in life but I am proud of who I am, who I’ve become and what I’ve learned from who I’ve been.
People are amazing. They’re like diamonds. No two are ever exact, different from every angle; one of the most beautiful and precious things to have once it’s true colors are shown and so very priceless to its owner and loved ones.
-Vane