Today I am haunted.
Haunted and in so much pain.
Today, a girl in California turns 25 years old. Just 3 years ago, on this day, I put all I could into making it a special day for her, one she'd never forget.
After all, she was my best friend. My sister, by bond if not by blood.
On that day, she woke up to gifts I'd brought into her room (we lived next door to each other in our college dorm). I told her we'd do whatever she wanted that day, and it was all on me. Throughout the day, if she saw something she liked, I'd buy it for her. I put a lot of thought into the gifts I'd given, and saved up money for MONTHS to make her a special offer.
She could choose 1 of 3 things: an iPod, a flight to Florida to see her fiance, or I'd fly her other best friend out from California to our Ohio college to spend time with her, every single cost on me, with full use of my car (to which she had the spare set of keys anyway).
That night, we went to dinner at her favorite Ohio restaurant. She thanked me for making her day memorable, and said that I was the ONLY friend who'd offered to do anything with her. It was a day I was thankful to have with her, and thankful God gave me the resources to be able to do it.
Now, let me make one thing perfectly clear: when I list all the things I did, it is NOT to brag, NOT to pat myself on the back, NOT to make me look good. I'm being specific about sharing these things for one reason:
25 months ago, this girl suddenly stopped talking to me, and overnight, for reasons I still do not know, I lost my best friend.
One of the things she said in the email she sent to get rid of me was that I was using her. USING HER. If you've got a short memory, go re-read what all I did for her birthday. Then tell me I was using her! If THAT is what using someone is, I sure wish someone would use me! And to be clear, I realize that material gifts/possessions are not what friendship's about. According to her, I was her ONLY friend to learn so much about her disease - Diabetes - and act on it. I wrote letters to lawmakers, attended rallies, and drove 1000-mile round-trips multiple times to participate in fundraising walks. When her grandfather died, I risked my life and disobeyed my doctors to travel to her when she asked me to. On the first anniversary of his death, I set the day aside to help her do whatever she needed in order to get through the day. I was there, no matter what, with everything in me. And I loved every moment of it, even the hard ones.
I'd never claim that I didn't make mistakes in our friendship - EVERYONE makes mistakes in EVERY relationship, whether it be with a friend, parent, sibling, spouse, anyone. But I deserved more. I deserved to be told when something was wrong, what the problem was, and given a chance to fix it. But I wasn't.
I cannot begin to explain the pain she has caused. If you are a regular reader of my blog, you know that I've been kidnapped, I was abused for over a decade, I was rejected by not one but TWO fathers and other family members. I know pain.
Yet NONE of that even came close to comparing to the pain of losing her.
She knew how hard it was for me to let her in. She knew that losing her would damage my heart beyond comprehension. And she also knew that I was mentally unstable, I was sick, and the ironic thing is that when she did this, I was getting better. The REAL me, the "old" me, was coming back, and she knew this - she said so herself the last time I saw her. She said in that last email that she wasn't breaking promises, but I've got her written words proving otherwise. And promises aside, this is just wrong. It's not how you treat people. And worst of all, she's a Christian - how does a Christian CHOOSE to hold a grudge & withhold forgiveness and reconciliation for life? Without even attempting a single time to make things right, not just in the eyes of each other, but in the eyes of God?
Today, I remember. I remember everything I loved about her, the good memories, the laughs, the adventures. I remember that birthday, and how excited I was to spend the day making her happy & making memories I thought we'd both treasure.
But I also remember suddenly not hearing from her, her hanging up on me the moment she heard my voice, and, after 2 months & 1 day of that torture, an email coming saying she was gone, without ever really explaining why.
And I allow the tears to fall, unable to hold them back any longer.
I remember the betrayal, the rejection, the confusion, the pain that is still fresh in my heart even though it's been just over 2 years.
And I somehow find the strength to send an email saying simply this: "Happy birthday! love you & praying for you... miss you, sis."
I don't know if that email address is even valid, and I know she won't open it even if it is... but I send it anyway, desperate to somehow mark this day.
And then I take a deep breath, wipe the tears from my cheeks, and try to distract myself... only to feel fresh tears on my face moments later.
Will the pain ever go away? Does she realize what she's done? Will I have to wait until we're in Heaven to look her in the eyes again?
Thursday, February 25, 2010
Tuesday, February 16, 2010
To Live
Over the centuries, many have pondered a simple question that not even philosophers have been able to answer: what does it mean to live?
I guess that depends on who you ask!
If you ask a doctor, to live might mean that your heart is beating, your brain is functioning, that you are clinically alive.
To a scientist, it may mean that an organism has the distinct characteristics of life.
To me, it means that you are one with God and living out the life HE has for you.
*********
I'm not gonna lie: when that first doctor looked anywhere but at me after examining me in the summer of 2008, telling me that something was very, very wrong, I was slightly frightened. Not in a "oh my goodness I can't eat, sleep, or function" kind of way, but it was certainly on my mind. Hearing at age 22 that you may be dying soon will do that to a person!
During the whirlwind of tests, scans, appointments, procedures, consultations, spinal taps, and medications over the next several weeks, there were many times when I questioned God.
Yes, that's right... I questioned God.
Big time.
After all, He had seen me through 11 years of abuse & a kidnapping that involved being taken to another country and held there for a full month. I'd survived a suicide attempt that even the doctors deemed a miracle - medically speaking my heart shouldn't have kept beating. I'd been into self-injury for years, and of all the times I cut myself or threw myself head-first off of things, I escaped relatively unharmed.
So after all of that, after NOT wanting to live for so long and FINALLY actually WANTING to live this life of mine, WHY ON EARTH WOULD GOD TAKE IT AWAY??????
Well, that's the thing... it isn't "on earth" that this can be understood; it's in Heaven.
Before my first brain surgery, I remember one particular phone conversation. My friend Holly lives in California & also suffers from chronic health problems, although hers are not life-threatening, and she understands living life in pain & sometimes not wanting to live at all. It was the night before my surgery, and she asked if I was scared.
It was a question I'd been asked countless times in the previous days, and when I answered, most thought I was lying, simply because they couldn't believe I could be so calm.
"No. I'm not scared."
Naturally, the next question was, "Why aren't you scared? You could die, be brain damaged, so much can happen."
And I answered with the confidence that comes ONLY from KNOWING that what you believe is Truth... knowing Jesus and that His Word is without flaw.
Although the impact of the answer was complex, it was incredibly simple: I was at peace because I knew my eyes would open again.
When they put that mask on me and I breathed in the substance that would put me to sleep, I knew that one of 2 things would happen: I would wake up in the PACU, or I'd wake up in the presence of my Lord Jesus Christ.
When I found out I needed an emergency brain surgery in this past December, I was at peace. Even though I suffered brain damage after the previous surgery (exactly 12 months prior) I knew God had a plan and that this was NOT without reason. I allowed them to put that IV in and put me to sleep because I knew God had me covered. No matter what happened, it would be a great outcome for me... because no matter what, either way, I would live.
**********
So now we come back to the question of what it means to live. Every person would probably answer this question differently, and that's fine. My answer comes from both personal experience & knowing God personally.
To live is to be confident that no matter where you are or what happens, God is in control and that means your time on earth will be the best it can possibly be.
To live is to realize that when your physical body dies, your soul goes on... and the freedom that comes with this realization allows you to embrace that life, whatever it may be.
To live is to allow Christ to guide you in everything. There is nothing and nobody greater.
To live is to embrace your condition & those around you in the confidence that God wants the best for you.
A person cannot be truly, fully alive until they have died to themselves, and that life is made complete at the end of the life we know.
When I'm put to sleep for my next brain surgery, I will fall asleep knowing the same things I knew the first 2 times: if God wants me to hang out here awhile longer, there's a reason. And if He feels that He has accomplished through me all that He created me to do, He will call me HOME. Whenever I get there, that is when I will truly start to live.
I guess that depends on who you ask!
If you ask a doctor, to live might mean that your heart is beating, your brain is functioning, that you are clinically alive.
To a scientist, it may mean that an organism has the distinct characteristics of life.
To me, it means that you are one with God and living out the life HE has for you.
*********
I'm not gonna lie: when that first doctor looked anywhere but at me after examining me in the summer of 2008, telling me that something was very, very wrong, I was slightly frightened. Not in a "oh my goodness I can't eat, sleep, or function" kind of way, but it was certainly on my mind. Hearing at age 22 that you may be dying soon will do that to a person!
During the whirlwind of tests, scans, appointments, procedures, consultations, spinal taps, and medications over the next several weeks, there were many times when I questioned God.
Yes, that's right... I questioned God.
Big time.
After all, He had seen me through 11 years of abuse & a kidnapping that involved being taken to another country and held there for a full month. I'd survived a suicide attempt that even the doctors deemed a miracle - medically speaking my heart shouldn't have kept beating. I'd been into self-injury for years, and of all the times I cut myself or threw myself head-first off of things, I escaped relatively unharmed.
So after all of that, after NOT wanting to live for so long and FINALLY actually WANTING to live this life of mine, WHY ON EARTH WOULD GOD TAKE IT AWAY??????
Well, that's the thing... it isn't "on earth" that this can be understood; it's in Heaven.
Before my first brain surgery, I remember one particular phone conversation. My friend Holly lives in California & also suffers from chronic health problems, although hers are not life-threatening, and she understands living life in pain & sometimes not wanting to live at all. It was the night before my surgery, and she asked if I was scared.
It was a question I'd been asked countless times in the previous days, and when I answered, most thought I was lying, simply because they couldn't believe I could be so calm.
"No. I'm not scared."
Naturally, the next question was, "Why aren't you scared? You could die, be brain damaged, so much can happen."
And I answered with the confidence that comes ONLY from KNOWING that what you believe is Truth... knowing Jesus and that His Word is without flaw.
Although the impact of the answer was complex, it was incredibly simple: I was at peace because I knew my eyes would open again.
When they put that mask on me and I breathed in the substance that would put me to sleep, I knew that one of 2 things would happen: I would wake up in the PACU, or I'd wake up in the presence of my Lord Jesus Christ.
When I found out I needed an emergency brain surgery in this past December, I was at peace. Even though I suffered brain damage after the previous surgery (exactly 12 months prior) I knew God had a plan and that this was NOT without reason. I allowed them to put that IV in and put me to sleep because I knew God had me covered. No matter what happened, it would be a great outcome for me... because no matter what, either way, I would live.
**********
So now we come back to the question of what it means to live. Every person would probably answer this question differently, and that's fine. My answer comes from both personal experience & knowing God personally.
To live is to be confident that no matter where you are or what happens, God is in control and that means your time on earth will be the best it can possibly be.
To live is to realize that when your physical body dies, your soul goes on... and the freedom that comes with this realization allows you to embrace that life, whatever it may be.
To live is to allow Christ to guide you in everything. There is nothing and nobody greater.
To live is to embrace your condition & those around you in the confidence that God wants the best for you.
A person cannot be truly, fully alive until they have died to themselves, and that life is made complete at the end of the life we know.
When I'm put to sleep for my next brain surgery, I will fall asleep knowing the same things I knew the first 2 times: if God wants me to hang out here awhile longer, there's a reason. And if He feels that He has accomplished through me all that He created me to do, He will call me HOME. Whenever I get there, that is when I will truly start to live.
Thursday, January 7, 2010
Complications - Prayers Needed
Starting last night, I was up with one of the worst migraines & because it is NOT responding to pain medication, that means it may not be a typical migraine, but rather complications from the surgery I had 2 weeks ago.
Because I'm so sick to my stomach from the pain (running to the bathroom a few times overnight) and my prescription anti-nausea/sedative medication is proving useless for this one, there is concern that the shunt is infected.
A shunt malfunction, like the one I had last month, is serious but usually not life-threatening if you catch it early. With a shunt infection, however, by the time you have symptoms, you've got around 24 hours to get into surgery or you could easily go into a coma and then die.
Having a disorder where I get DAILY migraines makes it SO MUCH more difficult to determine what symptom is a result of which cause. If I ran off to the hospital every time I had a symptom, I'd never come home... so it's basically "wait & see." Over time, and with further shunt problems, I'll learn what that particular thing feels like to me. For example, because I had a shunt malfunction (near complete obstruction of the tube in my brain), I know what I PERSONALLY will feel like when that happens, as it's different for every person. I KNOW this isn't a shunt malfunction, but it could be an infection, which is life-threatening, especially as I can't go in for treatment as early as some people can.
****************
My doctors have given me the strongest pain medication that can legally be prescribed for home-use (there are injections that can be given in the hospital, but only under direct supervision). Just yesterday I picked it up, so I had it last night and it did NOTHING except make me even more sick to my stomach. Even if I were to go in for pain management, they really couldn't give me anything stronger unless I was, medically speaking, dying - and no, just FEELING like I want to die from the pain doesn't count, unfortunately. They could give me the IV injection form of the oral they gave me yesterday, but even that didn't work when I was rushed to the hospital 2 days before my brain surgery. On that day, it took 2 doctors, 3 nurses, and 6 IVs to get the pain to where I could stop crying. Even then, my pain was probably an 8 (out of 10) but was so much improved that I requested to be discharged rather than admitted, as I just wanted to sleep and knew that on the Neurology floor I'd be woken up every single hour, and with migraines & headaches, if you can get enough relief that you can just fall to sleep, you prefer that very much.
I was so sick this morning that I couldn't walk downstairs to see my baby kitty (she's a year old but always my baby!) off to HER surgery - we're having her spayed - and that is sooooo unlike me. Especially because 6 years ago, I was too sick from a course of steroids to see my doggie off (she was 3 years old) to get some treatments and she died that night, I never got to see her or say goodbye. I've insisted for MONTHS that she come home from the animal hospital the same day as there won't be anyone there overnight, and yet today I know I'm far too ill to drive. I can't even walk out of my room right now, and can only type because I have a laptop on my bed and have to sit up because it hurts too bad to lay down & this is distracting me.
Please pray. For pain relief, for my stomach to settle, that nothing is wrong with my shunt. I'm a firm believer in shunts - I've seen how much good it's done me & how it erases a lot of risks and pain even though it does cause risks as well - but now I know why my Neurologist said "I don't like 'em" when we told him my Neurosurgeon wanted me to have a shunt. He did agree that the risks of the shunt were outweighed by the risks of NOT placing a shunt, but even then, he warned me that I should expect problems. He wasn't kidding.
Because I'm so sick to my stomach from the pain (running to the bathroom a few times overnight) and my prescription anti-nausea/sedative medication is proving useless for this one, there is concern that the shunt is infected.
A shunt malfunction, like the one I had last month, is serious but usually not life-threatening if you catch it early. With a shunt infection, however, by the time you have symptoms, you've got around 24 hours to get into surgery or you could easily go into a coma and then die.
Having a disorder where I get DAILY migraines makes it SO MUCH more difficult to determine what symptom is a result of which cause. If I ran off to the hospital every time I had a symptom, I'd never come home... so it's basically "wait & see." Over time, and with further shunt problems, I'll learn what that particular thing feels like to me. For example, because I had a shunt malfunction (near complete obstruction of the tube in my brain), I know what I PERSONALLY will feel like when that happens, as it's different for every person. I KNOW this isn't a shunt malfunction, but it could be an infection, which is life-threatening, especially as I can't go in for treatment as early as some people can.
****************
My doctors have given me the strongest pain medication that can legally be prescribed for home-use (there are injections that can be given in the hospital, but only under direct supervision). Just yesterday I picked it up, so I had it last night and it did NOTHING except make me even more sick to my stomach. Even if I were to go in for pain management, they really couldn't give me anything stronger unless I was, medically speaking, dying - and no, just FEELING like I want to die from the pain doesn't count, unfortunately. They could give me the IV injection form of the oral they gave me yesterday, but even that didn't work when I was rushed to the hospital 2 days before my brain surgery. On that day, it took 2 doctors, 3 nurses, and 6 IVs to get the pain to where I could stop crying. Even then, my pain was probably an 8 (out of 10) but was so much improved that I requested to be discharged rather than admitted, as I just wanted to sleep and knew that on the Neurology floor I'd be woken up every single hour, and with migraines & headaches, if you can get enough relief that you can just fall to sleep, you prefer that very much.
I was so sick this morning that I couldn't walk downstairs to see my baby kitty (she's a year old but always my baby!) off to HER surgery - we're having her spayed - and that is sooooo unlike me. Especially because 6 years ago, I was too sick from a course of steroids to see my doggie off (she was 3 years old) to get some treatments and she died that night, I never got to see her or say goodbye. I've insisted for MONTHS that she come home from the animal hospital the same day as there won't be anyone there overnight, and yet today I know I'm far too ill to drive. I can't even walk out of my room right now, and can only type because I have a laptop on my bed and have to sit up because it hurts too bad to lay down & this is distracting me.
Please pray. For pain relief, for my stomach to settle, that nothing is wrong with my shunt. I'm a firm believer in shunts - I've seen how much good it's done me & how it erases a lot of risks and pain even though it does cause risks as well - but now I know why my Neurologist said "I don't like 'em" when we told him my Neurosurgeon wanted me to have a shunt. He did agree that the risks of the shunt were outweighed by the risks of NOT placing a shunt, but even then, he warned me that I should expect problems. He wasn't kidding.
Saturday, January 2, 2010
More brain surgery needed...
At my Post-Op this week, we expected that my Neurosurgeon would take out my staples and check the incision from my emergency brain surgery. After he took all 14 staples out, he said the incision looked good. Then he checked my shunt valve setting, and it was a bit off - not a good sign.
As expected, we looked at my new CT scans, taken the day after surgery while I was still in the hospital. He didn't have to drill a new hole in my skull or clear a new pathway to the center of my brain where the ventricles are, using the old ones, except he went a little deeper than before into the center of my brain ventricle.
Unfortunately, he told me some things about my surgery that had been hidden from me by EVERYONE. I already knew that they'd been hiding something, as after I woke up I wasn't told much and only got details the following day. My Neurosurgeon & parents agreed to hold off on the bad news until I was slightly more "with it," in less pain, and beginning to recover.
It looks like I will need yet another brain surgery. This one will NOT be a shunt revision, it will be something to monitor the pressure in my skull. I will be hospitalized sometime in the near future for AT LEAST half a week.
After that, I'll still need my FULL WEEK hospitalization at Johns Hopkins, but that's on hold for now - one thing at a time.
As far as the half-week hospitalization, we can't do that until I recover from this last surgery. It'll probably be sometime in the next couple of months - no way to know for sure until we see how I recover. My Neurosurgeon (thankfully) wants to give my body a chance to rest & heal from this last surgery before we move on to the next one.
Anyone who's had multiple surgeries knows it's difficult... but BRAIN surgeries are BY FAR much more complicated because of the logistics of it being in your brain and you have to get over not only the medications & anesthesia, but also the fact that something is being put into your brain and all the things that go along with that.
Depending on what the surgery & related tests show, I may need a second shunt put it. That shunt could be another VP shunt (going from head to abdomen) or it could be one that goes from head to heart, although we know it will not be one that goes from spine to abdomen. We'll just have to take each step as it comes and decisions will be made based on how I'm doing and what the tests, scans, and surgeries show.
It's times like this that I am SOOOOO thankful that I will NEVER need a Spinal Tap again! Getting Spinal Taps repeatedly is EXTREMELY dangerous, and you really can't use the same exact spot more than once, so eventually you risk serious damage. Although the shunt brings risks & a lifetime of surgeries (usually only once every several years, I'm just a complicated case) it by far outweighs the risks both of Spinal Taps AND of having increased pressure. People don't realize that those two things can be DEADLY, even moreso than the possibly life-threatening problems associated with shunts.
I'm still in TONS of pain - PLEASE pray for pain relief, for healing, and for no further complications. As soon as I get the chance & feel up to it, I'll post my surgery story & some pictures. :-)
Thanks for the prayers.
As expected, we looked at my new CT scans, taken the day after surgery while I was still in the hospital. He didn't have to drill a new hole in my skull or clear a new pathway to the center of my brain where the ventricles are, using the old ones, except he went a little deeper than before into the center of my brain ventricle.
Unfortunately, he told me some things about my surgery that had been hidden from me by EVERYONE. I already knew that they'd been hiding something, as after I woke up I wasn't told much and only got details the following day. My Neurosurgeon & parents agreed to hold off on the bad news until I was slightly more "with it," in less pain, and beginning to recover.
It looks like I will need yet another brain surgery. This one will NOT be a shunt revision, it will be something to monitor the pressure in my skull. I will be hospitalized sometime in the near future for AT LEAST half a week.
After that, I'll still need my FULL WEEK hospitalization at Johns Hopkins, but that's on hold for now - one thing at a time.
As far as the half-week hospitalization, we can't do that until I recover from this last surgery. It'll probably be sometime in the next couple of months - no way to know for sure until we see how I recover. My Neurosurgeon (thankfully) wants to give my body a chance to rest & heal from this last surgery before we move on to the next one.
Anyone who's had multiple surgeries knows it's difficult... but BRAIN surgeries are BY FAR much more complicated because of the logistics of it being in your brain and you have to get over not only the medications & anesthesia, but also the fact that something is being put into your brain and all the things that go along with that.
Depending on what the surgery & related tests show, I may need a second shunt put it. That shunt could be another VP shunt (going from head to abdomen) or it could be one that goes from head to heart, although we know it will not be one that goes from spine to abdomen. We'll just have to take each step as it comes and decisions will be made based on how I'm doing and what the tests, scans, and surgeries show.
It's times like this that I am SOOOOO thankful that I will NEVER need a Spinal Tap again! Getting Spinal Taps repeatedly is EXTREMELY dangerous, and you really can't use the same exact spot more than once, so eventually you risk serious damage. Although the shunt brings risks & a lifetime of surgeries (usually only once every several years, I'm just a complicated case) it by far outweighs the risks both of Spinal Taps AND of having increased pressure. People don't realize that those two things can be DEADLY, even moreso than the possibly life-threatening problems associated with shunts.
I'm still in TONS of pain - PLEASE pray for pain relief, for healing, and for no further complications. As soon as I get the chance & feel up to it, I'll post my surgery story & some pictures. :-)
Thanks for the prayers.
Tuesday, December 22, 2009
Surgery Completed...
I'm home recovery from Thursday's brain surgery.
Ouch.
There's good news, bad news, and scary news.
I'll start with the good news. They only had to replace the part of my shunt that's in my brain... so they had to go through my skull into the center of my brain, plus some surgery on the outside of my skull, but they did NOT have to open my abdomen this time! I know this sounds crazy, but seriously, last time, the tummy part was far worse than the brain part. The very first thing I did when I woke up in the PACU was tighten my stomach muscles to see if they hurt. When they didn't, I couldn't stop thanking Jesus!
The bad news is, I am in a LOT of pain and couldn't stay in the hospital long enough. As you may know, here in D.C. we got a lot of snow this weekend. My Neurosurgeon said that if I didn't leave Friday night, I'd be there at least a week. So he wrote me extra pain medication scripts & sent me on my way. I was stable and had been breathing on my own for about 24 hours (only needed the ventilator for a few hours this time!) so the only reason they wanted to keep me was pain control... so we just decided I'd tough it out. I'm used to pain anyway.
The SCARY news is, once they were in my brain they found a collapsed brain ventricle. I'm not sure the specifics - I was pretty out of it when they explained it to me - but I know that sometimes they find it during autopsies rather than before. This MIGHT explain why I ended up back in the hospital in such unbearable pain last Tuesday. Anyway, it's fixed now, they'll just have to keep an eye on me. My CT scans on Friday looked good.
There's a lot more to share, but I'm having a hard time typing so I'll save it for later. I've been able to type short little comments here & there, but wanted to wait until I could give a real update to do anything on my blog. I'll post the whole story as soon as I'm able.
Please pray for pain control & that I do NOT get an infection! Last time my head had two small incisions... this time, I have a FIVE INCH incision with 14 STAPLES!!! Half my head is shaved, right in time for Christmas & having tons of pictures taken... lovely timing. :-P Needless to say, the incisions hurts... but it's also over a large part of my head, so there's a high risk of infection. If that happens, it could go to the shunt, and I'll need emergency surgery within 24 hours or I could go into a coma or even die. My Neurosurgeon said it best: "It probably would be a little worse for you, but believe me, if it gets infected, it won't be any fun for either of us for a long time."
Ouch.
There's good news, bad news, and scary news.
I'll start with the good news. They only had to replace the part of my shunt that's in my brain... so they had to go through my skull into the center of my brain, plus some surgery on the outside of my skull, but they did NOT have to open my abdomen this time! I know this sounds crazy, but seriously, last time, the tummy part was far worse than the brain part. The very first thing I did when I woke up in the PACU was tighten my stomach muscles to see if they hurt. When they didn't, I couldn't stop thanking Jesus!
The bad news is, I am in a LOT of pain and couldn't stay in the hospital long enough. As you may know, here in D.C. we got a lot of snow this weekend. My Neurosurgeon said that if I didn't leave Friday night, I'd be there at least a week. So he wrote me extra pain medication scripts & sent me on my way. I was stable and had been breathing on my own for about 24 hours (only needed the ventilator for a few hours this time!) so the only reason they wanted to keep me was pain control... so we just decided I'd tough it out. I'm used to pain anyway.
The SCARY news is, once they were in my brain they found a collapsed brain ventricle. I'm not sure the specifics - I was pretty out of it when they explained it to me - but I know that sometimes they find it during autopsies rather than before. This MIGHT explain why I ended up back in the hospital in such unbearable pain last Tuesday. Anyway, it's fixed now, they'll just have to keep an eye on me. My CT scans on Friday looked good.
There's a lot more to share, but I'm having a hard time typing so I'll save it for later. I've been able to type short little comments here & there, but wanted to wait until I could give a real update to do anything on my blog. I'll post the whole story as soon as I'm able.
Please pray for pain control & that I do NOT get an infection! Last time my head had two small incisions... this time, I have a FIVE INCH incision with 14 STAPLES!!! Half my head is shaved, right in time for Christmas & having tons of pictures taken... lovely timing. :-P Needless to say, the incisions hurts... but it's also over a large part of my head, so there's a high risk of infection. If that happens, it could go to the shunt, and I'll need emergency surgery within 24 hours or I could go into a coma or even die. My Neurosurgeon said it best: "It probably would be a little worse for you, but believe me, if it gets infected, it won't be any fun for either of us for a long time."
Thursday, December 17, 2009
Emergency Brain Surgery today...
Technically it's Thursday... technically, I'm having emergency brain surgery today.
You know what is REALLY weird???
Writing out my Advance Directive.
My wishes for treatment - or lack thereof - should I go into a coma or vegetative state.
I'm 23... it was a lot to think about.
But I added a section to the form. Guess what it was?!
I said that my Mom has the power to override ALL of my written directions... because we believe in Jesus. If she prays, and feels God leading her a particular way, I want her to have the authority to go against what I wrote down. I spelled it out, in black & white, so that there's room for God in that operating room, in that hospital.
So I'm feeling pretty good about that.
Please pray for me. Even in the best-case scenario, I'm in for a rough recovery. And last time I got brain damage. Plus I'm going downhill very quickly, so this will be much more complicated than last time.
I'll update as soon as I can.
You know what is REALLY weird???
Writing out my Advance Directive.
My wishes for treatment - or lack thereof - should I go into a coma or vegetative state.
I'm 23... it was a lot to think about.
But I added a section to the form. Guess what it was?!
I said that my Mom has the power to override ALL of my written directions... because we believe in Jesus. If she prays, and feels God leading her a particular way, I want her to have the authority to go against what I wrote down. I spelled it out, in black & white, so that there's room for God in that operating room, in that hospital.
So I'm feeling pretty good about that.
Please pray for me. Even in the best-case scenario, I'm in for a rough recovery. And last time I got brain damage. Plus I'm going downhill very quickly, so this will be much more complicated than last time.
I'll update as soon as I can.
Monday, December 14, 2009
Emergency Brain Surgery!!!!!!
Scheduled to have emergency brain surgery on Thursday morning.
My shunt is COMPLETELY blocked.
This is a very serious situation.
Please, please pray for this situation. For my health, for the doctors to have wisdom, for my insurance to cover without a problem, for my Pre-Op tests & appointment to go well and all the results to be received by the Neurosurgeon & hospital on time, and for peace of mind for my family & friends.
Emotionally, mentally, and spiritually, I'm doing just fine with this situation. I'm just mostly concerned about the technicalities, the arrangements & insurance & my parents' schedules and missing work, things like that. I'm mostly concerned for their peace of mind, as mine is good.
If you have a blog, would you PLEASE consider passing this prayer request along? Even if you don't, would you PLEASE be praying for me? It would mean more to me than you can imagine.
I'll likely be in the hospital for a couple of days. Once I'm home, I'll update when I'm able... last time (exactly 12 months ago) I had complications, so although I hope to update over the weekend about how it went, it could be longer if I have complications again.
Hopefully I'll talk to you guys soon... please keep all of these things I've requested prayers for lifted up in prayer.
Thanks so much! :-)
My shunt is COMPLETELY blocked.
This is a very serious situation.
Please, please pray for this situation. For my health, for the doctors to have wisdom, for my insurance to cover without a problem, for my Pre-Op tests & appointment to go well and all the results to be received by the Neurosurgeon & hospital on time, and for peace of mind for my family & friends.
Emotionally, mentally, and spiritually, I'm doing just fine with this situation. I'm just mostly concerned about the technicalities, the arrangements & insurance & my parents' schedules and missing work, things like that. I'm mostly concerned for their peace of mind, as mine is good.
If you have a blog, would you PLEASE consider passing this prayer request along? Even if you don't, would you PLEASE be praying for me? It would mean more to me than you can imagine.
I'll likely be in the hospital for a couple of days. Once I'm home, I'll update when I'm able... last time (exactly 12 months ago) I had complications, so although I hope to update over the weekend about how it went, it could be longer if I have complications again.
Hopefully I'll talk to you guys soon... please keep all of these things I've requested prayers for lifted up in prayer.
Thanks so much! :-)
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