Sorry for the long wait between posts. Transitioning from the operation to finally getting Em settled into a room was a lengthy process. I am glad to say that she is resting however there is still a lot of pain that she is fighting and sickness from all of the medications. Today was not a good visiting day for her so it was good that you all are understanding and willing to hold off until she is feeling better.
I know I said this in the last post but I can not help but reiterate how blessed we have felt. The numerous blog post, emails, texts and phone calls were a nice reminder of how many people are in our corner. We love you all!!
Wednesday, August 22, 2012
Post Surgery Update
As of 11:30 am the surgery was completed. The Surgeon said that 'it went beautifully' and that he 'was able to accomplish all he hoped to'. Thank God!!
The Big Day
As you all know today is the day. We are up at 4am getting ready for what we have started to call the the day Emily can finally begin to heal and not the day she has brain surgery. Here is the information that we found out yesterday:
- The Surgery is scheduled for 7:55am.
- We have to be there at 5:30 for prep
- The operation should last about 3 hours
- The post-op recovery should be about 2 hours
- Therefore we should be getting the results around 11am and should be able to see her around 1pm
- During the operation only 3 people per patient are allowed in the surgical waiting room
I think we are glad that this is happening so early in the morning. We have been holding the weight of it for months so to not have to think about it for a few hours that morning is probably best.
At first we were discouraged about the hospital limiting us to three people to be there. However, we realize that physical presents is not the true definition of being there for us. The kind words, thoughts and prayers that have been sent our way leading up to this has been incredible and makes us realize that the number of people at the hospital does not matter. The overwhelming support that you have and will continue to give us is really what matters. You are all a blessing to us and we can not thank you enough as you have lifted us when we felt down and helped us get to this day in the best physical and emotional shape we could be in. Sorry if we could not say this to you individually. Please know that we are so grateful.
'And the peace of god, which surpasses all understanding, well guard your hearts and minds in Christ Jesus' Phillipians 4:7 (Thank you Amie)
- The Surgery is scheduled for 7:55am.
- We have to be there at 5:30 for prep
- The operation should last about 3 hours
- The post-op recovery should be about 2 hours
- Therefore we should be getting the results around 11am and should be able to see her around 1pm
- During the operation only 3 people per patient are allowed in the surgical waiting room
I think we are glad that this is happening so early in the morning. We have been holding the weight of it for months so to not have to think about it for a few hours that morning is probably best.
At first we were discouraged about the hospital limiting us to three people to be there. However, we realize that physical presents is not the true definition of being there for us. The kind words, thoughts and prayers that have been sent our way leading up to this has been incredible and makes us realize that the number of people at the hospital does not matter. The overwhelming support that you have and will continue to give us is really what matters. You are all a blessing to us and we can not thank you enough as you have lifted us when we felt down and helped us get to this day in the best physical and emotional shape we could be in. Sorry if we could not say this to you individually. Please know that we are so grateful.
'And the peace of god, which surpasses all understanding, well guard your hearts and minds in Christ Jesus' Phillipians 4:7 (Thank you Amie)
Thursday, August 16, 2012
What's been going on in my head...
I haven't been posting much these days and its probably as good a time as any to say why. (its also a long one, so refresh that cup of coffee first then sit down for the story)
The clinical trial that I took part in a number of months ago called me in May to go over the results. Entirely unrelated to the study, they found some issues with the gross anatomy of my brain. Reviewing my prior MRIs, it was there as well. So in this fortunate series of events, the doctor discovered something called Arnold Chiari Malformation, Type 1.
This is Arnold Chiari Malformation, as basic as I can describe it: my brain was jostled into the wrong place, so that the bottom part of it (the cerebellum) is pressing through the hole that exits my skull (the foramen magnum). This acts like a tub stopper, causing a build up of cerebrospinal fluid and blood. That build up puts pressure on the brain and alerts the Arnold Chiari patient of the number 1 symptom: a severe headache.
I still have a concussion (as evidenced by the clinical study). I have concussion symptoms not explained by Arnold Chirai. But I also have Arnold Chirai symptoms not explained by concussions. Then I have a handful of symptoms where the two overlap. Picture, if you will, a venn diagram with things like "constant headache, noise sensitivity, sleep disturbance, difficulty concentrating" in the center. After they treat the Chiari, they have stressed that there is no nice, neat percentage of a chance they can put on these overlapping symptoms going away. They have no way of knowing what my concussion is like, underlying the Chiari. I have two extremely rare circumstances put together, which makes a prognosis near impossible. (Keep in mind we're coming off of 4 really really tough years, so 'no guaranteed result' is still music to our ears)
But we have to treat the Chiari. I've had fluid flow scans to show that there is blockage. I have significant Chirai specific symptoms. Without treatment, it will remain, forever (and possibly get worse). I have two brain conditions now and the good news is that one can be handled.
On a more positive note, this news is also the first hope I've had that things could change for me. Neil and I had braced ourselves for a future where I wake up every single day with this almost unbearable pain. I felt like I was in a long, dark tunnel. Hearing this, it seemed like I could take a short cut into the light. The idea that I could begin to feel even remotely better is such a gift. That I could have room to breathe... even a inch... changes our whole future
For the few of you who don't already know, Arnold Chiari treatment involves a "decompression", which is a misnomer that means brain surgery, but sounds like putting your feet up after a long day at work. They remove my top few vertebrae to gain access to the descended cerebellum (called tonsils), they shave open my foramen magnum wider so fluid can flow again, and they go up to lift the dura (layer surrounding my brain) to secure my brain in its proper place. For the medically fascinated, you can watch versions of it on youtube. I think its all amazing. (For the weaker stomaches that don't want a visual but want to know some more, here is a good link about what I have comin)
My hospital stay will be 3-5 days, then a pretty brutal 3 month recovery. But here's the good news friends, I have an A+ in recovery! If I were to put anything on a job resume after all these years it would be "enduring massive amounts of pain" (and I would sub-bullet point that with "getting stitches without Novocain" and "repeatedly lifting my body weight into a truck on a broken shoulder" and "having a constant headache for over 1,550 days" ) ... which makes me the perfect candidate for this particular venture.
My surgery is scheduled for August 22. For anyone out there keeping track, that's the date of our 2 year wedding anniversary. Soooo, there's that. People keep asking us how we are doing and I think having the surgery on our anniversary seems to sum it up well. Sure we slyly joke about staying in an 'all inclusive' when people innocently ask "what are your anniversary plans?" but honestly, its really the pits and not normal to spend that day with a gauze wrapped head and a foley catheter. Sure we know there will never be a day in our future when life will be perfect - there will always be some problem or another - and we know some people truly have it worse... however, if I'm being so very honest, there are rare times we can't help but look at the lives of our peers and we can't help but compare. In those times that old sports chant comes to mind... "nuts and bolt, nuts and bolts, we. got. screwed."
But we're not special, every single one of you have probably uttered the phase 'life isn't fair'... I'm allowing that my husband gets to say it too, as he spends the afternoon of our anniversary holding his breath and hoping the statistics are in my favor, instead of making dinner reservations.
We go through everything together. I know there's people out there that have husbands that travel or even more difficult, husbands that are in the military. But all I know is our pattern and our pattern is that I struggle every day and he is by my side every day. Which makes this so terribly hard. Because he will sit in a waiting room and I will wheel off to an OR. And that's right about the time when I want to hold his hand (on our anniversary).
But we're also not special in that we're not alone in joy. Every single one of you has probably said 'I can't believe how lucky I am.' ...when I wake up and see him I'll feel that sentiment in waves. And then, so his fear can melt away and he'll know the wife he loves is with him again, I'll say something cheesy like "you make me the happiest lady in the whole entire neuro-surgical recovery unit"
But how are we really? I think best answer is that we are resilient. And we do have hope with our fear. And we are okay. And we feel that we can look back on this day as another type of milestone - "The day when our lives started over, yet again." Once the pain passes (which I have to believe it will), we can have a fondness for it all. And we'll thank God for a sense of humor. So this day being such a big day for us is like this whole thing - it has ups and downs and its all kind of overwhelming.
Many of you have been so generous and kind and amazing and asked us what you can do for us. Right now the answer is simple "we don't know." This is uncharted territory. Right now we are saying a firm no to food and no to anything else. But that could change - Neil does love Cliff Bars, he might get a craving - or I might be able to keep some food in my belly at some point and then we might celebrate by accepting groceries. (you see, they expose the equilibrium and vomit center of my brain to air during the surgery, which must be like spraying a cat with a squirt gun, apparently it gets super angry)
Part of us wants to do what we did for the first months that we knew about all this and stay in a cocoon - only emerging on a day when we can say with joy and NORMALCY, "oh, me? lately? I'm just hanging out. My co-workers are lame. Work is boring. Life is great. Yada Yada. how about you?"
But we have reluctantly grown to accept that is not where we are right now. We are uprooted. We have such big emotions all the time - big hope, big fear, big excitement, big nervousness, big joy, big uncertainty. Just venturing out on a limb to share this isn't easy. Its hard at a time when we feel buoyant with hope to greet someone's sadness. And its near impossible when we feel overwhelmed by what we're facing to hear encouragement or to hear - well, anything. That leaves all you lovely readers and caring hearts in quite the predicament of how to interact with us, doesn't it?
But we ultimately decided its better to be exposed. To risk the highs and lows with everyone. Because since we started telling people, we started getting cards in the mail (and texts and phone calls). Simple, sweet, messages. Mostly they say "thinking of you." and mostly they come when I feel like I'm pulled so tight I'll break. Its made our vulnerability worth the outpouring of support.
Although We're always struggling with the idea of how much to share and how much to keep private, we came to the decision to use this blog as the place to be open. My limited readership is mostly family, close friends, and 4 people in Russia. Since my humble blog isn't an internet sensation, we thought this would be the best place to inform you on what's going on.
So you don't need to call and ask and so Neil doesn't need to spend the bulk of his time updating individually - Neil will be taking over my blog. He will post on this site on the day of surgery and in the long months following. You can check in for updates on me without feeling like you're 'bugging' us and I promise he won't go into detail when I spend the whole day puking. (He's also concise - which means you get a break from my run on sentences.)
Dear loved ones (if you've read all the way to the end you are very dear and most likely a loved one),
I want to thank you now, because our most fervent prayers 'to feel lifted up in love, care, kindness, and support' have already been answered so fully we can hardly believe it. As a bonus, of course, it would also be really super great to make it through surgery okay and then not have these headaches anymore either. Thank you, thank you, I really do adore you all, four years and then some is a long time to pray and care so much, thank you thank you thank you thank you thank you
The clinical trial that I took part in a number of months ago called me in May to go over the results. Entirely unrelated to the study, they found some issues with the gross anatomy of my brain. Reviewing my prior MRIs, it was there as well. So in this fortunate series of events, the doctor discovered something called Arnold Chiari Malformation, Type 1.
This is Arnold Chiari Malformation, as basic as I can describe it: my brain was jostled into the wrong place, so that the bottom part of it (the cerebellum) is pressing through the hole that exits my skull (the foramen magnum). This acts like a tub stopper, causing a build up of cerebrospinal fluid and blood. That build up puts pressure on the brain and alerts the Arnold Chiari patient of the number 1 symptom: a severe headache.
this is from the chiari institute.
you'll have to believe me, that its way more satisfying to see one's own brain scan and not a diagram
(then an invisible pain is made tangible and its finally something)
I still have a concussion (as evidenced by the clinical study). I have concussion symptoms not explained by Arnold Chirai. But I also have Arnold Chirai symptoms not explained by concussions. Then I have a handful of symptoms where the two overlap. Picture, if you will, a venn diagram with things like "constant headache, noise sensitivity, sleep disturbance, difficulty concentrating" in the center. After they treat the Chiari, they have stressed that there is no nice, neat percentage of a chance they can put on these overlapping symptoms going away. They have no way of knowing what my concussion is like, underlying the Chiari. I have two extremely rare circumstances put together, which makes a prognosis near impossible. (Keep in mind we're coming off of 4 really really tough years, so 'no guaranteed result' is still music to our ears)
But we have to treat the Chiari. I've had fluid flow scans to show that there is blockage. I have significant Chirai specific symptoms. Without treatment, it will remain, forever (and possibly get worse). I have two brain conditions now and the good news is that one can be handled.
On a more positive note, this news is also the first hope I've had that things could change for me. Neil and I had braced ourselves for a future where I wake up every single day with this almost unbearable pain. I felt like I was in a long, dark tunnel. Hearing this, it seemed like I could take a short cut into the light. The idea that I could begin to feel even remotely better is such a gift. That I could have room to breathe... even a inch... changes our whole future
For the few of you who don't already know, Arnold Chiari treatment involves a "decompression", which is a misnomer that means brain surgery, but sounds like putting your feet up after a long day at work. They remove my top few vertebrae to gain access to the descended cerebellum (called tonsils), they shave open my foramen magnum wider so fluid can flow again, and they go up to lift the dura (layer surrounding my brain) to secure my brain in its proper place. For the medically fascinated, you can watch versions of it on youtube. I think its all amazing. (For the weaker stomaches that don't want a visual but want to know some more, here is a good link about what I have comin)
My hospital stay will be 3-5 days, then a pretty brutal 3 month recovery. But here's the good news friends, I have an A+ in recovery! If I were to put anything on a job resume after all these years it would be "enduring massive amounts of pain" (and I would sub-bullet point that with "getting stitches without Novocain" and "repeatedly lifting my body weight into a truck on a broken shoulder" and "having a constant headache for over 1,550 days" ) ... which makes me the perfect candidate for this particular venture.
My surgery is scheduled for August 22. For anyone out there keeping track, that's the date of our 2 year wedding anniversary. Soooo, there's that. People keep asking us how we are doing and I think having the surgery on our anniversary seems to sum it up well. Sure we slyly joke about staying in an 'all inclusive' when people innocently ask "what are your anniversary plans?" but honestly, its really the pits and not normal to spend that day with a gauze wrapped head and a foley catheter. Sure we know there will never be a day in our future when life will be perfect - there will always be some problem or another - and we know some people truly have it worse... however, if I'm being so very honest, there are rare times we can't help but look at the lives of our peers and we can't help but compare. In those times that old sports chant comes to mind... "nuts and bolt, nuts and bolts, we. got. screwed."
But we're not special, every single one of you have probably uttered the phase 'life isn't fair'... I'm allowing that my husband gets to say it too, as he spends the afternoon of our anniversary holding his breath and hoping the statistics are in my favor, instead of making dinner reservations.
We go through everything together. I know there's people out there that have husbands that travel or even more difficult, husbands that are in the military. But all I know is our pattern and our pattern is that I struggle every day and he is by my side every day. Which makes this so terribly hard. Because he will sit in a waiting room and I will wheel off to an OR. And that's right about the time when I want to hold his hand (on our anniversary).
But how are we really? I think best answer is that we are resilient. And we do have hope with our fear. And we are okay. And we feel that we can look back on this day as another type of milestone - "The day when our lives started over, yet again." Once the pain passes (which I have to believe it will), we can have a fondness for it all. And we'll thank God for a sense of humor. So this day being such a big day for us is like this whole thing - it has ups and downs and its all kind of overwhelming.
Many of you have been so generous and kind and amazing and asked us what you can do for us. Right now the answer is simple "we don't know." This is uncharted territory. Right now we are saying a firm no to food and no to anything else. But that could change - Neil does love Cliff Bars, he might get a craving - or I might be able to keep some food in my belly at some point and then we might celebrate by accepting groceries. (you see, they expose the equilibrium and vomit center of my brain to air during the surgery, which must be like spraying a cat with a squirt gun, apparently it gets super angry)
Part of us wants to do what we did for the first months that we knew about all this and stay in a cocoon - only emerging on a day when we can say with joy and NORMALCY, "oh, me? lately? I'm just hanging out. My co-workers are lame. Work is boring. Life is great. Yada Yada. how about you?"
But we have reluctantly grown to accept that is not where we are right now. We are uprooted. We have such big emotions all the time - big hope, big fear, big excitement, big nervousness, big joy, big uncertainty. Just venturing out on a limb to share this isn't easy. Its hard at a time when we feel buoyant with hope to greet someone's sadness. And its near impossible when we feel overwhelmed by what we're facing to hear encouragement or to hear - well, anything. That leaves all you lovely readers and caring hearts in quite the predicament of how to interact with us, doesn't it?
But we ultimately decided its better to be exposed. To risk the highs and lows with everyone. Because since we started telling people, we started getting cards in the mail (and texts and phone calls). Simple, sweet, messages. Mostly they say "thinking of you." and mostly they come when I feel like I'm pulled so tight I'll break. Its made our vulnerability worth the outpouring of support.
So you don't need to call and ask and so Neil doesn't need to spend the bulk of his time updating individually - Neil will be taking over my blog. He will post on this site on the day of surgery and in the long months following. You can check in for updates on me without feeling like you're 'bugging' us and I promise he won't go into detail when I spend the whole day puking. (He's also concise - which means you get a break from my run on sentences.)
Dear loved ones (if you've read all the way to the end you are very dear and most likely a loved one),
I want to thank you now, because our most fervent prayers 'to feel lifted up in love, care, kindness, and support' have already been answered so fully we can hardly believe it. As a bonus, of course, it would also be really super great to make it through surgery okay and then not have these headaches anymore either. Thank you, thank you, I really do adore you all, four years and then some is a long time to pray and care so much, thank you thank you thank you thank you thank you
Thursday, August 9, 2012
Waiting
"Waiting is the in-between time.
It calls us to be in this moment, this season,
without leaning so far into the future that we tear our roots from the present.
When we learn to wait, we experience where we are
as what is truly substantial and precious in life.
We discover, as T.S. Eliot wrote, "a lifetime of burning in every moment."'
- Sue Monk Kidd
I'm in a time of waiting and I'm trying to do it well.
I'm trying to be in the moment (the long, dragging moment)
Which means my coffee beans are ground, then pressed the french way.
And I drink slowly with the nice mug, and a good book.
And I listen to this song that my cousin Maryl loves.
I listen to it over and over till lumineers fill every corner of my home.
And I contemplate breaking my new years resolution to not buy any clothing,
because I got a few wonderful birthday notes that said "treat yourself"
And I wait.
novel-ty suits
According to the website MATCHBOOK, its now a thing to match your bathing suit to your book. (thus the name, match-book)
I wanted to insert all sorts of snarky comments about disposable income and embarrassment for what the first world people trouble themselves with...
I wanted to insert all sorts of snarky comments about disposable income and embarrassment for what the first world people trouble themselves with...
but then I proceeded to scroll though every single outfit/book combo on that site. (and ok, maybe, just maybe, I even wondered if any suits I already own worked for any books).
Since the internet has drawn me into devoting time to things that don't matter, I feel I should impart these things to you - so we can share in the time wasting guilty pleasures.
(you can even read the compelling story of how this girl came up with the idea to combine suits with books *spoiler alert, she saw a girl reading a book and it happened to match her swim suit)
Wednesday, August 8, 2012
Thursday, August 2, 2012
August
I love that years have seasons, phases to help mark the passing of time.
Autumn has always been my favorite which makes my ability enjoy the end of summer a little trying.
Plus this summer has already felt stretching and difficult and long.
But August has its upsides, and I don't want it to pass me by with out fully enjoying what it has to offer.
Here is a list of what I'm looking forward to this month...
29
This is the month I round out the third decade of my life, turning twenty nine!
I love my birthday for its ease of remembering:
8 - 3 - 83
I used to hate my summer birthday because I never got a fun pencil and school party.
Here's a fun birthday breakdown to see how common your birthday is
(even if you'd rather believe its special, like I do).
(even if you'd rather believe its special, like I do).
Big Night
Just like the delightful movie "Big Night"
(which you should immediately stream on Netflix if you've never seen it)
my mother is hosing a truly magical evening of great food and atmosphere.
I'm having close friends to her yard for many small courses,
broken up with drinks and music and dancing late into the night.
It will be a bella sera
Sneak Away
We have a wedding this month in West Virginia, and even though we could make the drive home,
we decided to splurge for a hotel room.
We have a mini bottle of champagne and a deck of cards and each other.
We have plans to sleep in sunday and hike, have "church" in a park, and eat a picnic lunch.
All these plans could be dashed if my head doesn't cooperate...
but even the idea of turning a simple wedding into a full weekend sneak away is delightful.
"Camp" Weekend
I love to go camping, and by "camping" I mean:
renting a cabin with a group of friends that has full amenities. Then I make a cocktail and eat dip and laugh till it hurts.
Mid-month, we are going away with Neil's college friends - a group of unspeakably fun people. Its hard to believe didn't know them until I started dating Neil. Even though they aren't technically my friends, I couldn't be more excited to spend a weekend "roughing it" with this group.
Olympics
I wish I could say I were looking forward to watching this.
I want to get swept up in the emotions.
But I have to admit that I feel just like my friend Tom - "meh"
Sangria
It takes the two great items: fruit and wine, then lets them marinate.
I like this standard sangria recipe
but there's also this fresh recipe for peach mango pineapple white sangria
I like this standard sangria recipe
but there's also this fresh recipe for peach mango pineapple white sangria
Summer Movies
Remember all that talk about our Summer Movie Fantasy League?
Well Team Orbin is currently in first place!!
And on the weekend of Aug 17th the last three movies on our team are released
(poor planning there, but oh well)
So if you are too hot to stay outside, go and see one of these flicks and help clinch a victory:
Paranorman, Sparkle, Expendables 2
I will be at E2 because they got a new writer and new director since the first one,
(and I was one of the fans that didn't think there was anything wrong with the first one.)
Ordination
My wonderful friend Caitlin has put in many years of work to graduate from Seminary (and pass a crazy test and then get a wonderful job working in the prison systems.)
This month she will have the blessing of gathering her friends, family, mentors, and church to see her Ordination. I consider myself honored to be in that room of people... really I feel honored to have been with her along all those steps it took to get into that room.
I can't wait to whoop it up for my friend that has accomplished so much
Ordination
My wonderful friend Caitlin has put in many years of work to graduate from Seminary (and pass a crazy test and then get a wonderful job working in the prison systems.)
This month she will have the blessing of gathering her friends, family, mentors, and church to see her Ordination. I consider myself honored to be in that room of people... really I feel honored to have been with her along all those steps it took to get into that room.
I can't wait to whoop it up for my friend that has accomplished so much
Re-vamps
This month we are doing an all out cleaning of our apartment.
(This is not something I look forward to.)
In doing so, we are changing some things around... and I love change!
New color bed sheets will do a lot for a girl.
We're also officially turning "the guest room" into
"THE PITT ROOM... that people can also sleep in"
Maybe we'll re-arrange kitchen furniture and switch up the living room, then I'll be oh so satisfied!
Anniversary
We get to celebrate our two year anniversary this month!!
Year 2 is the cotton anniversary, which has made gift planning fun and cottony.
Our exact plans for the day are interesting, to say the least, and I'll share more about them soon.
For now I can say, I've never been so happy to have my husband by my side.
Avocado Dip
I've made this avocado cream dip several times and I just don't think I could go back to guacamole any time soon. This stuff is just too dreamy and good!
I make the recipe with less oil and slightly less stock. I also completely ignore the tofu part (its a horrible tofu recipe) and I serve it with vegetables (zucchini strips or red peppers) or wheat thins or tortilla chips.... or I just eat this with a spoon.
You can pour it over a corn salsa or a bean dip or fish tacos .. or just eat it with a spoon!
Little Ones!!!
This month has a couple of special dates for little gherkins in our life.
My genius nephew (I said it, he's a genius) turns one!!!
and
Neil's cousin has a squeezable, perfect, little girl that also turns one on the same day!!
AND
Neil's cousin has a squeezable, perfect, little girl that also turns one on the same day!!
AND
My cousin Tony and his wife Katie are due to have a baby -
this is a little kid I cannot wait to love oh so very very suffocatingly much,
this child will begin to stiff arm my kisses as soon as it gains the upper body strength.
I hope you are enjoying the last month of the summer season. Feel free to share what ever it is you may be looking forward to, it might help pull me through this long month and into the fall.
this is a little kid I cannot wait to love oh so very very suffocatingly much,
this child will begin to stiff arm my kisses as soon as it gains the upper body strength.
I hope you are enjoying the last month of the summer season. Feel free to share what ever it is you may be looking forward to, it might help pull me through this long month and into the fall.
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