Show Your Hope!

Hope is a Journey….

Quick update. Stay Tuned

July 27, 2012

Greetings from inside the walls of Mass General (again).

I am writing from you from the Epilepsy Monitoring Unit (EMU) hooked up to an obscene amount of electrodes (brain, cardiac, oxygen) and I am sporting an IV and a fabulous head wrap. Yesterday I started my day with an MRI/MRS and then waited outside with Ralph and Beast for 4 hours until my bed on the EMU was ready.

It took another 3-4 hours or so to get all the electrodes on, IV in, labs drawn, get acquainted with 3 sets of doctors, and get myself settled. They had me sign a consent form releasing them of liability if I get injured or something horrible happens if they do induce a seizure…and also a release to be videotaped 24/7 until discharge.

The plan is to keep me for 5 days – during which time they will try to elicit a seizure (good times I tell ya, good times). At that point they will decide whether or not to start medication (though they said Lamictil was the drug of choice) and they will make a plan from there. They will then decide if I can drive again or not – but it’s not sounding favorable – at least for now.

In the meantime, I get to spend the next few days confined to these 4 walls staring at the TV and the Zebra Sasha insisted I take with me. Yes folks, boredom has already set in.

See, I went to an appointment with the Epilepsy Clinic 2 weeks ago (it was scheduled by the neurology team at MGH from my stay at the end of June) and they decided they felt that I was likely having seizures given my symptoms. Since they were able to get me into the EMU so fast, they decided to hold off on starting seizure medications and restricted my driving until further notice (yes, it totally bites not being able to drive – I mean, even though I wasn’t really driving much at all, it’s different when you are told you CAN’T drive). They also wanted me to have an MRI/MRS done on the day of the admission just prior to coming up to the floor.

I wasn’t expecting any of this – but I must say, the Epilepsy team is pretty darn efficient. This unit team means business also – You have to have an IV (just in case), seizure pads on your bed, heart and O2 monitors, you can’t go to the bathroom without a nurse being there (there aren’t cameras in the bathroom so they have to be present). If you feel weird in any way, you push a special button and they all come running (I have yet to push the button so far). Needless to say, you hear a lot of running on this floor. I can only imagine what the job description for this unit was worded, “Must have athletic skills and be able to leap tall buildings in an entire bound.”

I haven’t lost my sense of humor though. I figured, NO ONE looks ‘awesome‘ in this get up – actually, we all look pretty ridiculous all wrapped up – so why not give people who are coming into contact with you a smile…and permission to giggle. 😉

Last night was pretty rough – I kept setting off the cardiac alarms because my heart rate was going below 50 – and a few other things also. At 4 a.m. I woke gasping for air…no idea why, but it certainly wasn’t a seizure. I had the nurse come in and they paged the neurologist – they went back and looked at everything and, sure enough – I almost flew out of the bed. Guess that sleep study needs to come sooner than later – maybe it was apnea or something. Whatever it was, it was NOT fun. This happens about once or twice a week. This is the second time this week. Can’t wait to get to the bottom of that!

So, for now – I am going to end this post. Sorry it’s not my typical blog post – but I am working on about 8 hours sleep since Wednesday and my head is screaming.

I will write another blog post tomorrow, so stay tuned. I’ve got a lot of things to share with you!

In the meantime, please take a moment to check out this link. My friend’s 14 year old son is starting chemo tomorrow in preparation for a bone marrow transplant. Today, a central line was placed. I know how much it means to me when my friends reach out and support us when times are tough – so I want to do the same for this family. If you can share this with other people you know and also say a prayer for them, that would be wonderful.

Meet the Menswar Family

Love and Light – Catch you tomorrow…..

Stefani

Category:

Uncategorized

An Honor

July 14, 2012

How do you begin to describe what it feels like to be chosen out of hundreds of individuals as one of the top 50 most inspirational women in the region from the Mill Era (1830’s) to present?

Really, I don’t think you can.

I received a phone call from Linda Chemlay at the end of May telling me that I had been chosen along with 49 other women as trailblazers in our region. Not only was I speechless, but I was humbled and honored to be included with individuals like Olympia Dukakis, Bette Davis, Anne Sullivan, Eileen Donoghue, Nancy Donahue, Niki Tsongas, Carol Cleven, Pat Bradley, Edith Nourse Rogers, Rosalind Elias, Harriet Rogers, Rita Mercier, Evelyn Reardon, Lucy Larcom, Janet Hall and SO many more.

Click here to view the write up – I am on page W38-W39 and also on W53, but I encourage you all to read the entire spread a ALL the women featured in this spread are inspirational and their stories are ones to be shared!

Quite honestly, everything that I’ve done I couldn’t have done alone. I had help from God, Ralph, my parents, my children, my aunt Louise, my nieces (Brittany, Kaitlyn and Corynne), my hardworking ‘partners in crime’ (Michelle Fox, Angie Taranto, Joanne Stanway, and Chelsea Hertzog), my amazing friends, my incredible community…I was not a one woman army making all of my endeavors a success!

So, here’s to ALL of you who have supported my vision, my efforts, my events, my journey. I share this honor with each and every one of you – without your support, encouragement, participation, and belief in what I was doing – none of it would have been possible!

Courtesy of Eric Sciacca

Courtesy David Andrews

Courtesy of Eric Sciacca

Courtesy Eric Sciacca

I cannot end this post without honoring some of my biggest inspirations….and though I can’t name them all, I can name a few….

Richard and Marion Morris

Brittany Wilkinson

Eithene Hilliard

Emma Frances Dalton

Ellie Wilkinson

Ella Magee

Maggie Agnew

Madison Grantham

Bridget Nuccitelli

Dominic Nuccitelli

And so many more……

We fight in your honor, we live in your honor, we love in your honor…

Remember,

We owe it to each other….

Here’s to many more endeavors together!

Love and Light,

Stefani

Category:

Uncategorized

1 Comment

Tagged with:

A Room with a View

June 27, 2012

Life looks incredibly different from the 22nd story window of MGH.

The world below goes on without hesitation and doesn’t wait for you or anyone else to be ready to join in.

And while it’s hard to watch the moments pass, there’s something to be said about stillness…

Stillness isn’t something that comes easy for me…but 4 days of it is enough to bring clarity and perspective about the things that really matter in life…

And while I find no great pleasure in being in the hospital (again), there is much to be said about finding the beauty even in the difficult moments….or, as others would say – ‘learning to dance in the rain.’

Sometimes, it’s hard to find peace in the storm…..

But nothing is impossible.

I haven’t had a great few weeks physcially -and I can honestly say that it’s getting old being in and out of the hospital so much. I probably held off on going in longer than I should have this time around, but I was trying to manage it on my own at home, which I was clearly unsuccessful at.

The good news is that MGH knows me so well and my crashes appear to have been documented well enough, because this is now the 2nd time I’ve come in and the process of triage, registration, IV/Labs/EKG, nurse, doctors and admission decision have come in less than an hour and a half (the wait for the room….not so much!).

I’ve had great experiences at MGH – but, by far, my experience with the nurses and doctors on Phillips 22 has been the best. I haven’t been able to avoid the zillion pokes for labs and such…but they’ve been fantastic and my numbers have finally normalized. The neurology team was awesome and have worked hard to find solutions for some of the issues I’ve been having. We tried Cpap and Bipap last night to help me breathe better, but my body did not like either – so we’re back to the drawing board on that.

There are other options, and the respiratory therapist was in this morning discussing them with me. I will have another EEG today and a long term EEG out patient as well. We’ll be scheduling a sleep study to determine the exact cause of my respiratory issues at night…which will be better than the monitoring that they’ve done overnight. This team is well oiled and we’re making progress….just slower than I’d like!

For now, my focus is getting back home…..

And enjoying all of the beauty around me, because truly – even in the worst of times, there is beauty and precious simplicity to be found.

I have definitely had some time to think, and – despite how frustrating it is to never know when the next crash will hit, I do believe that everything happens for a reason -even if I don’t understand it, want to play a part in it, am not ready for it…..Nothing is by chance.

I don’t think I have it any worse than anyone and I know I have it better than others – so I count every blessing that I have and I give every moment my all.

So it is on that note that I continue to move forward and keep my eyes on the beauty in life – keeping in mind one of my favorite phrases from Ani Difranco: “Cause when I look around, I think this….this is good enough. And I try to laugh at whatever life brings. When I look down, I just miss all the good stuff…and when I look up, I just trip over things.”

My hope is to go home today and catch up on some snuggle time with the kids, catch up on quality time with Ralph, visit with my houseguest Chelsea and soak up as much time with her as I can (I’ve missed 4 days with her already!), make more memories with my family, AND to celebrate my mom and aunt’s birthday (which I missed due to being in the hospital).

Speaking of family….did I ever tell you how amazing they all are? I can’t thank my mom, dad, aunt and neice enough for all their help over the past few days (and, quite frankly…years). It doesn’t matter what time of day or night it is, if you need them….they are there. What we have is quite special and I am incredibly grateful for that.

Like I said, NOTHING is by chance. I do believe that God gave us each other because He KNEW we would need each other.

I am looking forward to the warm weather, the family time, and all of the 4th of July events that are coming up. We’ve actively participated in the town’s celebrations for the past 5 years and I have to say, it’s one of my favorite things to do!