I have received so many phone calls, texts, Facebook messages, etc. in the last forty-eight hours expressing concern, fears, support, and my all time favorite, humor.
Over the last three summers I have laughed at the fact that I had been invited to nearly twenty weddings. I make the joke, "I didn't even know I had that many friends!" I remember thinking the same back when I had my surgery, and I have thought it about thirty times in the last two days again. It amazes me the amount of support I receive from not only my family, good friends, fellow zipper-heads, but from the long-lost friends, brand new friends, and friends of friends, that in a nutshell, are strangers. If nothing else in this whole experience, I have learned the importance of sharing a kind word or gesture no matter how big or small. I know I sound like a broken record, but everyone has their shit and you honestly never know, flashing that smile, can truly, honestly, completely turn a day around for someone.
Okay, thankful, positive rant over. Onto these "answers".
Good news: My Chiari has not reformed. My tonsils are exactly where they should be after they were cauterized during the surgery. My blood flow is "beautiful" and they see very little turbulence.
Bad news: The pain is most likely caused by my Chiari.
Sounds like a riddle huh?
I sat on the phone and literally said, "Okay, soooooooooooo...."
I've read many, many people's blogs and stories of Chiari and how frustrating it can be. How doctor's aren't understanding of symptoms, are at a total loss, etc. I honestly don't feel like this is the case with my neurosurgeon. I love him, remember? I think he knows he has now done everything he can do to help me at this point with my Chiari. He has made my brain "look" the way it should.
But I still have to say, OUCH!
Luckily, when I did my extended "soooooooooo...", the physician's assistant said although there is nothing Dr. Vez can do to help my pain surgically (thank goodness, really), there is my neurologist that I originally went to in 2009. He is there to help support me with pain management and strategies to cope. She reminded me that he did in fact correctly diagnose my Chiari. I really felt like she was on my side, trying to calm my nerves that I was stuck with this pain forever. I got off the phone feeling relieved, anxious, happy, sad, overwhelmed, disappointed, and really optimistically scared. Oxymorons, I know.
So here I sit, today feeling pretty okay. I have had twenty-four hours to soak it all in and accept that I need to be proactive if I want to get my new aches and pains under control. I understand Chiari has no cure, has no forever-fix. I understand everyone has aches, pains, and hurts. I understand I do not need to panic. I understand that Chiari is just going to be a part of who I am, and I will learn to use any resource I can to help feel relief as I need to.
There we go. I don't know if these are the answers I was looking for, or if they are even answers at all. But I am very okay with the fact that I do not need to undergo another brain surgery, the fact my doctor isn't concerned that the paralyzing feeling will damage my nerves forever, and the fact that now this is the new bump in the road that I will overcome.
That's just life, right? Hey, but at least life is good. :)
Saturday, September 27, 2014
Thursday, September 25, 2014
Look Who's Back, Back Again ...
Freaking Chiari. That is what is back again. A little Eminem to start this rainy morning.
Actually Eminem didn't start this rainy day for me. An MRI and a Cine Blood Flow study at Capital Health did.
I delayed writing a blog, just because I have felt that I was being a Negative Nancy in the past few weeks and if you've read this before, you know how much I hate that.
However, today I posted a picture of my hospital bracelet so I think it is absolutely time to explain what is happening these days.
About a month ago I mentioned getting knocked in the waves while playing my dolphin and seal game and triggering a headache and some tingling. For the next few weeks I had a lot of pain around where most of my Chiari headaches originate. Two weeks ago, I was closing the windows in my loft and had a tough time pulling one down. Using a lot of effort and my killer upper body strength, I put my hands above my head and pulled down. I instantly felt the tingle and sharp pain from the base of my skull (where the Chiari headaches originate) into my shoulder, down my arm, and up my neck into my ear and cheeks.
For the next seventy-two hours I had a full blown, for lack of a better word, Chiari-attack. I was in debilitating pain. Not only a headache, but weakness down my right arm into my hand, my shoulders felt like a boulder was sitting on them, and I felt I couldn't hold my head up straight. Before my surgery, I referred to one of my symptoms as "Woody Arm", making an analogy to Toy Story when Woody's arm gets injured and he just drags it along as he is walking. For about two full days, I had a very serious Woody Arm. I had difficulty lifting my fork to eat, my cup to drink, and my markers to teach. While I was driving, I needed to support my Woody Arm with my other arm or rest it on the steering wheel. I forgot how horrible this pain was. During these seventy-two hours, I went to work, came home, laid on the couch, barely ate, and cried a lot. For the first time in over 19 months, I felt paralyzed, trapped in my own body again. However, at this point...I just kept saying to myself and others, "No big deal, this is just a weird Chiari fluke." -- Fluke is the right word, right?
Then, about a week ago, I was woken four times in the night from the most severe, sharp, shooting pain from the base of my skull into my right cheek and into what felt like my eye socket. I was honestly worried. It was a new pain, one I don't even remember having before my surgery. I considered waking up my roommate or calling mom and dad to take me to the emergency room. Again, I sat there and thought, "okay if I go, they will run the same tests, tell me nothing is wrong, blah..blah..blah. And, I love my job. I want to go to work tomorrow. The kids will make me better. My friends will help."
The pain continued though work. I was barely present. The right side of my face was completely numb. I was constantly asking my coworkers if my face was droopy. I felt like the water I was drinking was coming out of my mouth. I couldn't keep my eyes open. I couldn't focus, I couldn't react to things the way I normally do. I wasn't finding my little friends' high pitch voices and silly antics as cute as I normally do. I hate to say I felt paralyzed, but I did. I needed to make a call.
I HATE THE PHONE. The fact that with no prompting, no suggestion, and no demands from mom or anyone else, I picked up the phone and called my doctor. I cried hard when the nurse got on the phone and explained the pain. She said it was absolutely something to worry about. She warned me that a Chiari can reform even after a surgery. She suggested coming to Capital Health and getting an MRI sooner than later.
After spending a combined two days, three hours on hold, four dropped calls, and three missed calls, I got an authorization from my new insurance company and an appointment at Capital Health.
This morning at 7am I went in for a MRI of my brain. They took me out after awhile and hooked me up to a monitor so they could do a Cine Blood Flow study.
This is where we stand. Waiting...
Back before my surgery, I joined a lot of Chairi social media groups, to remind myself that it was normal to get the surgery, it was normal to feel the pain, it was normal to be frustrated. Man am I glad I didn't get out of any of them. Last night, I sat and read many fellow Zipper-head's posts about their pain and similar symptoms. It helped to know that I am not alone or crazy in my descriptions of my symptoms.
So many people have said to me in the last few days, "Hope everything comes out okay in your tests." How terrible is it that I am sitting here, anxiously awaiting a call to tell me something in fact IS wrong. I need an explanation. Why do I suddenly feel like I did 19 months ago? Why do I suddenly need to think before I jump a wave? Why do I need to think before I close a window? Why do I need to hold in a sneeze? Why is all this pain back?
I fear the phone call that says, "everything looks great." Because if that is the case, then what now?
Alright, that's enough complaining. I'm sorry! It has been a very confusing and frustrating few weeks.
Prayers and a lot of hope for curable answers...
Actually Eminem didn't start this rainy day for me. An MRI and a Cine Blood Flow study at Capital Health did.
I delayed writing a blog, just because I have felt that I was being a Negative Nancy in the past few weeks and if you've read this before, you know how much I hate that.
However, today I posted a picture of my hospital bracelet so I think it is absolutely time to explain what is happening these days.
About a month ago I mentioned getting knocked in the waves while playing my dolphin and seal game and triggering a headache and some tingling. For the next few weeks I had a lot of pain around where most of my Chiari headaches originate. Two weeks ago, I was closing the windows in my loft and had a tough time pulling one down. Using a lot of effort and my killer upper body strength, I put my hands above my head and pulled down. I instantly felt the tingle and sharp pain from the base of my skull (where the Chiari headaches originate) into my shoulder, down my arm, and up my neck into my ear and cheeks.
For the next seventy-two hours I had a full blown, for lack of a better word, Chiari-attack. I was in debilitating pain. Not only a headache, but weakness down my right arm into my hand, my shoulders felt like a boulder was sitting on them, and I felt I couldn't hold my head up straight. Before my surgery, I referred to one of my symptoms as "Woody Arm", making an analogy to Toy Story when Woody's arm gets injured and he just drags it along as he is walking. For about two full days, I had a very serious Woody Arm. I had difficulty lifting my fork to eat, my cup to drink, and my markers to teach. While I was driving, I needed to support my Woody Arm with my other arm or rest it on the steering wheel. I forgot how horrible this pain was. During these seventy-two hours, I went to work, came home, laid on the couch, barely ate, and cried a lot. For the first time in over 19 months, I felt paralyzed, trapped in my own body again. However, at this point...I just kept saying to myself and others, "No big deal, this is just a weird Chiari fluke." -- Fluke is the right word, right?
Then, about a week ago, I was woken four times in the night from the most severe, sharp, shooting pain from the base of my skull into my right cheek and into what felt like my eye socket. I was honestly worried. It was a new pain, one I don't even remember having before my surgery. I considered waking up my roommate or calling mom and dad to take me to the emergency room. Again, I sat there and thought, "okay if I go, they will run the same tests, tell me nothing is wrong, blah..blah..blah. And, I love my job. I want to go to work tomorrow. The kids will make me better. My friends will help."
The pain continued though work. I was barely present. The right side of my face was completely numb. I was constantly asking my coworkers if my face was droopy. I felt like the water I was drinking was coming out of my mouth. I couldn't keep my eyes open. I couldn't focus, I couldn't react to things the way I normally do. I wasn't finding my little friends' high pitch voices and silly antics as cute as I normally do. I hate to say I felt paralyzed, but I did. I needed to make a call.
I HATE THE PHONE. The fact that with no prompting, no suggestion, and no demands from mom or anyone else, I picked up the phone and called my doctor. I cried hard when the nurse got on the phone and explained the pain. She said it was absolutely something to worry about. She warned me that a Chiari can reform even after a surgery. She suggested coming to Capital Health and getting an MRI sooner than later.
After spending a combined two days, three hours on hold, four dropped calls, and three missed calls, I got an authorization from my new insurance company and an appointment at Capital Health.
This morning at 7am I went in for a MRI of my brain. They took me out after awhile and hooked me up to a monitor so they could do a Cine Blood Flow study.
This is where we stand. Waiting...
Back before my surgery, I joined a lot of Chairi social media groups, to remind myself that it was normal to get the surgery, it was normal to feel the pain, it was normal to be frustrated. Man am I glad I didn't get out of any of them. Last night, I sat and read many fellow Zipper-head's posts about their pain and similar symptoms. It helped to know that I am not alone or crazy in my descriptions of my symptoms.
So many people have said to me in the last few days, "Hope everything comes out okay in your tests." How terrible is it that I am sitting here, anxiously awaiting a call to tell me something in fact IS wrong. I need an explanation. Why do I suddenly feel like I did 19 months ago? Why do I suddenly need to think before I jump a wave? Why do I need to think before I close a window? Why do I need to hold in a sneeze? Why is all this pain back?
I fear the phone call that says, "everything looks great." Because if that is the case, then what now?
Alright, that's enough complaining. I'm sorry! It has been a very confusing and frustrating few weeks.
Prayers and a lot of hope for curable answers...
Wednesday, August 20, 2014
1 year and 6 months? Holy Cow (heart!)
I know everyone says it and it is so cliché, but time freakin' flies. How in the world has it been a year and a half since my Chiari surgery? How in the world has it been over two months since I last blogged? How in the world has it been almost six months since I moved into my house? How in the world is it already the end of August? How in the world does school start in two weeks? How in the world is it that the Phillies stink so bad? How in the world is it that I am still not Hunter Pence's girlfriend?
Okay, the last one is understandable, we are on separate coasts and different time zones.
If you can't sense from my tone, life is a little, okay a lot, better than it was since my last post. Anyone that has talked to me in the last two months has heard me say, "It is amazing what Lexapro and a roommate can do!"
It is so sad to me that people are afraid to admit to needing some kind of help. As the truths of Robin Williams' death come out, it just hits me so hard. As someone who vocalizes all my fears, emotions, feelings, and ALWAYS wears my heart on my sleeve, I can not imagine feeling THAT alone. I know it is an illness, I know he was sick. But, in the same breath, I know how great it feels to vent, to realize you are not alone. Any time I mention taking Lexapro, most people respond with, "oh yeah my mom is on it", "oh yeah my friend takes that", "oh yeah I am on it", "oh yeah my dog takes it"...
I believe one of my biggest flaws is my constant need to be open and honest. Some would say that sometimes, I communicate my feelings too much, all emotions included. However, I thank God every day that I have the confidence to be open about how I am feeling in any context.
I joke all the time that I am the happiest, nicest, and funniest person I know, and I believe it to be true. That being said, it doesn't mean I don't have a bad day, week, or month. As I wrote about last post, I was in a weird place in my life and not feeling myself. I HATED it. I didn't like being by myself, felt like my friends were far away, worried about my sister, and thought I met the one that got away. But, don't they say you need rainy days to appreciate the sunny ones? Or something like that... I never really was good with phrases.
Life is good right now. I have a roommate. I have had so much fun at my MANY weddings. I have loved going to my bachelorette parties. I have met new baby cousins. I have enjoyed my beach days with friends and family. I have hung out with some old friends. I have met many new ones. I have spent nights out doing new things. My cousins are coming in from Michigan and Florida. Steelers are starting, Penguins soon. My birthday is coming up. Pumpkin beer is on the shelves...
Adding to that list, the ocean has been beyond perfect this summer. Clear, warm, dare I say Caribbean like? The ocean is one of my favorite places in the world. It is a rare beach day that I don't go in. As a kid my cousins and I used to play "Seal or Dolphin", where we would go over the wave if we yelled "seal" and under if we yell "dolphin". As almost 27, it is still one of my favorite games.
Except, now, with Chiari, I find that I often trigger a headache when I am being a seal. The pressure of the water can sometimes knock my neck at a certain angle that affects my Chiari. I know the instant it happens. Twice this summer it has happened hard enough that I have been down for the count for a day or two. You would think I would learn the lesson, stop being a seal, always go for dolphin. Easier said than done. I have come to terms with the fact that I won't be riding roller coasters anymore (which is something I like to do), but no way will I give up my seal-life in the ocean. Suck it Chiari.
Speaking of Chiari, I also want to comment on the ALS ice bucket challenge. For a few weeks I thought I was going to sneak by without being nominated. Don't get me wrong, I am all for donating and am in positive disbelief at how beneficial this viral act has gone. It is truly amazing.
Two days ago my friend nominated me. I panicked. A bucket of water falling onto my head. It sounds painful. As someone that has Chiari, as someone that has issues with anything that "whiplashes" my neck, I don't feel I can participate for fear of triggering a headache. I know, I know, sounds wimpy, but I honestly don't think I want to risk it. I would love to donate to ALS, that is not my point. My point is, Chiari still affects my life. Three years ago I would have been the first to think this challenge was hysterical and would be so fun. Now, I am scared to hurt myself. What am I, 90?
To this day I would say with 100% certainty that my surgery was the best thing that ever happened to me. It has given me my life back and the ability to worry about things that a normal 26-year-old should. It has given me the chance to appreciate all the emotions that I feel now that I couldn't feel behind the headaches and nerve pain. Yes, I still have rare pain with a passing headache, slight tingling, and occasionally word mix-up, but like I have always said, "everyone has their shit".
Just because I think it is a perfect wrap up for this post, I am going to end it with a Ralph Waldo Emerson quote that I recently found and feel is so me...
Be Silly. Be Honest. Be Kind.
Okay, the last one is understandable, we are on separate coasts and different time zones.
If you can't sense from my tone, life is a little, okay a lot, better than it was since my last post. Anyone that has talked to me in the last two months has heard me say, "It is amazing what Lexapro and a roommate can do!"
It is so sad to me that people are afraid to admit to needing some kind of help. As the truths of Robin Williams' death come out, it just hits me so hard. As someone who vocalizes all my fears, emotions, feelings, and ALWAYS wears my heart on my sleeve, I can not imagine feeling THAT alone. I know it is an illness, I know he was sick. But, in the same breath, I know how great it feels to vent, to realize you are not alone. Any time I mention taking Lexapro, most people respond with, "oh yeah my mom is on it", "oh yeah my friend takes that", "oh yeah I am on it", "oh yeah my dog takes it"...
I believe one of my biggest flaws is my constant need to be open and honest. Some would say that sometimes, I communicate my feelings too much, all emotions included. However, I thank God every day that I have the confidence to be open about how I am feeling in any context.
I joke all the time that I am the happiest, nicest, and funniest person I know, and I believe it to be true. That being said, it doesn't mean I don't have a bad day, week, or month. As I wrote about last post, I was in a weird place in my life and not feeling myself. I HATED it. I didn't like being by myself, felt like my friends were far away, worried about my sister, and thought I met the one that got away. But, don't they say you need rainy days to appreciate the sunny ones? Or something like that... I never really was good with phrases.
Life is good right now. I have a roommate. I have had so much fun at my MANY weddings. I have loved going to my bachelorette parties. I have met new baby cousins. I have enjoyed my beach days with friends and family. I have hung out with some old friends. I have met many new ones. I have spent nights out doing new things. My cousins are coming in from Michigan and Florida. Steelers are starting, Penguins soon. My birthday is coming up. Pumpkin beer is on the shelves...
Adding to that list, the ocean has been beyond perfect this summer. Clear, warm, dare I say Caribbean like? The ocean is one of my favorite places in the world. It is a rare beach day that I don't go in. As a kid my cousins and I used to play "Seal or Dolphin", where we would go over the wave if we yelled "seal" and under if we yell "dolphin". As almost 27, it is still one of my favorite games.
Except, now, with Chiari, I find that I often trigger a headache when I am being a seal. The pressure of the water can sometimes knock my neck at a certain angle that affects my Chiari. I know the instant it happens. Twice this summer it has happened hard enough that I have been down for the count for a day or two. You would think I would learn the lesson, stop being a seal, always go for dolphin. Easier said than done. I have come to terms with the fact that I won't be riding roller coasters anymore (which is something I like to do), but no way will I give up my seal-life in the ocean. Suck it Chiari.
Speaking of Chiari, I also want to comment on the ALS ice bucket challenge. For a few weeks I thought I was going to sneak by without being nominated. Don't get me wrong, I am all for donating and am in positive disbelief at how beneficial this viral act has gone. It is truly amazing.
Two days ago my friend nominated me. I panicked. A bucket of water falling onto my head. It sounds painful. As someone that has Chiari, as someone that has issues with anything that "whiplashes" my neck, I don't feel I can participate for fear of triggering a headache. I know, I know, sounds wimpy, but I honestly don't think I want to risk it. I would love to donate to ALS, that is not my point. My point is, Chiari still affects my life. Three years ago I would have been the first to think this challenge was hysterical and would be so fun. Now, I am scared to hurt myself. What am I, 90?
To this day I would say with 100% certainty that my surgery was the best thing that ever happened to me. It has given me my life back and the ability to worry about things that a normal 26-year-old should. It has given me the chance to appreciate all the emotions that I feel now that I couldn't feel behind the headaches and nerve pain. Yes, I still have rare pain with a passing headache, slight tingling, and occasionally word mix-up, but like I have always said, "everyone has their shit".
Just because I think it is a perfect wrap up for this post, I am going to end it with a Ralph Waldo Emerson quote that I recently found and feel is so me...
Be Silly. Be Honest. Be Kind.
Monday, June 9, 2014
Out of My Mind
I have spent the last two months literally feeling out of my mind and out of my body.
There have been so many changes in my life and daily routine, that I just feel like I am standing on the outside watching someone else live my life.
I am living by myself in a house that I bought. It is such a bittersweet thing for me. If anything I have learned that I, in fact, don't do well alone. I get inside my own head and have a lot of trouble getting myself back to some sanity. I have kept myself very busy over the last few months. I have agreed to do a lot of extra work things, spent time with old friends, happy hour with new, and agreeing to almost any plans that I am approached with.
Don't get me wrong, I love being busy. But, I miss being able to just sit, watch TV and let my mind get lost in Jax Teller's eyes or in Chandler's humor.
Half the time, I don't even know what I am thinking about. Does that make sense? Literally as I was typing that I started thinking about what a rhetorical question is and if what I just asked counts as one, looked up and thought where did I put my water, wait, did I switch my sheets, I want to take some Advil, ew I don't remember Leonard and Sheldon getting a cat, OH MY GOSH DID I PAY THAT PARKING TICKET?
Seriously? Is this what happens to grown ups? How do people have jobs they don't love? How do people have kids to take care, dinner to make and a house to clean all at the same time of these other thoughts?
I know my life isn't tough, and I hate to complain. I am just in such a funk.
I am one of the most confident, happiest, funniest people I know and yet I feel like my crazy mind has taken over everything I have ever been confident, happy, and funny about.
I know buying the house was so huge and exciting, but then I question, should I have gone south now since I have nothing holding me back here? I know living alone is good for everyone to do once in their life, but then I think who the heck is going to listen to my stories tonight!? I know being confident in who you are is a key to finding someone, but why do I feel so lonely? I know I have a full time job next year, but what am I teaching? My sister is doing okay, but why do I always feel so angry? The Phillies, why do they suck so bad?
I know this all sounds like a negative post, which is not my favorite thing to do but there is an optimistic angle. Promise. The bright side of all these uneasy feelings is that I can complain about these things. It is funny. For the last twenty four hours I have had a horrible headache. It has caused me to feel very weak and tired. But, it isn't a Chiari headache. Just a sinus or allergy headache over my eyes. No big deal, except it does hurt...
I just sat here and wrote an entire blog about other things than my headache. That is how I know my surgery was still the best decision I made (or that was made for me).
Yes, I do still get headaches, occasionally tingling, and often drop things out of my right hand. From what I read and hear, it is all still very normal. I am not worried, it does not affect my day to day life by any means, and I am sitting here capable of rambling complaints like the average twenty six year old!
As I have always said, Life is Good. I have family that supports me even through these crazy, not so happy times. I have great friends and coworkers that have become friends. I have a shore house to escape to every weekend. I have a roommate moving in soon. I have four weddings and a few bachelorette parties coming up in the next few months with some great friends. My cousin is coming up a few times this summer to visit from North Carolina. I have a job I look forward to going to every day. I made out with professional hockey player and I don't care who knows it! :)
I know I need to get out of my own head, bring the confidence, happiness, and humor back into who I am. I can't get lost in these looney thoughts that I have very little control over.
I went through brain surgery, with a confident smile and laughed much of the time. I know I can get through this little road block in life with the same confident smile and laugh all of the time, just need to put it all in perspective sometimes.
There is a guy I follow on Instagram named Tyler Knott Gregson and he posts thoughts in fancy typewriter font. I swear sometimes he is just in my brain, taking all the rambled thoughts and putting them on paper in a rhythmic, sense-making, poetic phrase. This one, being one of my favorites, seems so simple and however if I were to phrase it, it would sound like AHHHHHHH.
"Sometimes, you just cannot sigh deep enough."
He just gets me! :)
There have been so many changes in my life and daily routine, that I just feel like I am standing on the outside watching someone else live my life.
I am living by myself in a house that I bought. It is such a bittersweet thing for me. If anything I have learned that I, in fact, don't do well alone. I get inside my own head and have a lot of trouble getting myself back to some sanity. I have kept myself very busy over the last few months. I have agreed to do a lot of extra work things, spent time with old friends, happy hour with new, and agreeing to almost any plans that I am approached with.
Don't get me wrong, I love being busy. But, I miss being able to just sit, watch TV and let my mind get lost in Jax Teller's eyes or in Chandler's humor.
Half the time, I don't even know what I am thinking about. Does that make sense? Literally as I was typing that I started thinking about what a rhetorical question is and if what I just asked counts as one, looked up and thought where did I put my water, wait, did I switch my sheets, I want to take some Advil, ew I don't remember Leonard and Sheldon getting a cat, OH MY GOSH DID I PAY THAT PARKING TICKET?
Seriously? Is this what happens to grown ups? How do people have jobs they don't love? How do people have kids to take care, dinner to make and a house to clean all at the same time of these other thoughts?
I know my life isn't tough, and I hate to complain. I am just in such a funk.
I am one of the most confident, happiest, funniest people I know and yet I feel like my crazy mind has taken over everything I have ever been confident, happy, and funny about.
I know buying the house was so huge and exciting, but then I question, should I have gone south now since I have nothing holding me back here? I know living alone is good for everyone to do once in their life, but then I think who the heck is going to listen to my stories tonight!? I know being confident in who you are is a key to finding someone, but why do I feel so lonely? I know I have a full time job next year, but what am I teaching? My sister is doing okay, but why do I always feel so angry? The Phillies, why do they suck so bad?
I know this all sounds like a negative post, which is not my favorite thing to do but there is an optimistic angle. Promise. The bright side of all these uneasy feelings is that I can complain about these things. It is funny. For the last twenty four hours I have had a horrible headache. It has caused me to feel very weak and tired. But, it isn't a Chiari headache. Just a sinus or allergy headache over my eyes. No big deal, except it does hurt...
I just sat here and wrote an entire blog about other things than my headache. That is how I know my surgery was still the best decision I made (or that was made for me).
Yes, I do still get headaches, occasionally tingling, and often drop things out of my right hand. From what I read and hear, it is all still very normal. I am not worried, it does not affect my day to day life by any means, and I am sitting here capable of rambling complaints like the average twenty six year old!
As I have always said, Life is Good. I have family that supports me even through these crazy, not so happy times. I have great friends and coworkers that have become friends. I have a shore house to escape to every weekend. I have a roommate moving in soon. I have four weddings and a few bachelorette parties coming up in the next few months with some great friends. My cousin is coming up a few times this summer to visit from North Carolina. I have a job I look forward to going to every day. I made out with professional hockey player and I don't care who knows it! :)
I know I need to get out of my own head, bring the confidence, happiness, and humor back into who I am. I can't get lost in these looney thoughts that I have very little control over.
I went through brain surgery, with a confident smile and laughed much of the time. I know I can get through this little road block in life with the same confident smile and laugh all of the time, just need to put it all in perspective sometimes.
There is a guy I follow on Instagram named Tyler Knott Gregson and he posts thoughts in fancy typewriter font. I swear sometimes he is just in my brain, taking all the rambled thoughts and putting them on paper in a rhythmic, sense-making, poetic phrase. This one, being one of my favorites, seems so simple and however if I were to phrase it, it would sound like AHHHHHHH.
"Sometimes, you just cannot sigh deep enough."
He just gets me! :)
Thursday, March 27, 2014
13 Months: From Brain Surgery to Homeowner
Okay, for starters, 13 months? How? Where did the time go? I am sitting here, full of anxiety, nerves, fear, happiness, excitement, and in all honesty, shock.
13 months ago today, I too, was feeling all those feelings. Anxiety, nerves, fear about the surgery I would undergo in just a few short sleepless hours. Happiness and excitement for the fact that I may, in just a few months, be able to start living the life of a normal 26 year old girl. Shock that I was going to have brain surgery, they were going to shave a part of my head, that I would have a cow heart permanently patched to my skull, and that this was all happening to me.
Tonight, 13 months later, I am again sitting here full of emotion. Anxiety, nerves, fear about the idea that I will be signing my life (and bank account) away in just a few short sleepless hours. Happiness and excitement for the fact that I am living the normal life of a 26 year old girl by buying my very first home. Shock, that in a little over a year after having brain surgery, having part of my head shaved, a cow heart patched to my skull, that I am able to accomplish this HUGE milestone in my life.
Never. Never in the 12 months previous to having the offer accepted on the house would I have believed anyone that said I would be able to do this. Seriously. I could barely go to work each day, let alone make my bed in the morning. I had surgery, I was out of work for two months. I was unsure of a job scenario for this past year. I felt I couldn't leave because I was so emotionally attached to my sister's addiction. I had dinner on the table every night, a DVR in my room, a cleaning lady and a fancy new house. Let's be honest, I was living comfortably.
However, the countless times I said "I am so ready to get out", "I need to move out", "How long until I can realistically do this?" are now a reality. I am ready to get out. I am moving out. Realistically, I can do this.
It is so funny to me how my mind and body work. Before my surgery, yes I was an emotional wreck. I felt every emotion in the book and I feel like I probably even made up a few. However, I never second guessed my decision. I was confident in the fact it was the right thing for me, that I would come out of it 100% better, and I would never regret having the surgery. I was positive, sure, and always hopeful.
Brain surgery. No big deal. I was okay with it. I could do it.
Homeownership. Slightly different story. I am an overwhelmed maniac. Don't get me wrong. I am so, so excited. I can't wait to be on my own, have my own space, and be a grown up. But, there is so much fear and anxiety attached to this decision. Is this the right time? Can I live by myself? Is this the right location? (With these weather patterns, I am second guessing this more and more ... South is looking REAL good these days!) Do I want to paint this room a color? Will I have a roommate? Can I afford to live on a tight budget? Do I bother getting extra sports channels to watch the sucky Phillies this year?
I am trying to practice what I preached throughout the surgery and recovery. Stop asking what if. Deal with what is at hand. And, I know I will. I am just finding so many ways to compare these two HUGE life changing scenarios that I have dealt with in the last year. I am literally sitting here shaking my head at the fact that I was more okay with my surgery than I am with signing these papers tomorrow.
Or is it just like what they say about child birth and its been long enough since the surgery that I am forgetting all that fear and anxiety I had leading up to it?
Alright, enough. There are so many things I am confident with in this house, that I am now changing my mind. From here on out, all positives. I can't wait to have that key in my hand tomorrow. I can't wait to see the floors once they are laid. I can't wait to paint my room. I can't wait to sleep there for the first night. I can't wait to "cook" my first meal, or have someone do it for me. ;) I can't wait to see where I am going to put all my giraffe things. I can't wait to prove to myself that this is exactly what I should be doing at this point in my life.
So, this was not a very Chiari-based post, but more so an outlet to organize my chaotic thoughts.
Isn't it so cool that 13 months later my brain does hurt, BUT that its from thinking about paint colors and giraffe placement? AH! Life is Good. :)
13 months ago today, I too, was feeling all those feelings. Anxiety, nerves, fear about the surgery I would undergo in just a few short sleepless hours. Happiness and excitement for the fact that I may, in just a few months, be able to start living the life of a normal 26 year old girl. Shock that I was going to have brain surgery, they were going to shave a part of my head, that I would have a cow heart permanently patched to my skull, and that this was all happening to me.
Tonight, 13 months later, I am again sitting here full of emotion. Anxiety, nerves, fear about the idea that I will be signing my life (and bank account) away in just a few short sleepless hours. Happiness and excitement for the fact that I am living the normal life of a 26 year old girl by buying my very first home. Shock, that in a little over a year after having brain surgery, having part of my head shaved, a cow heart patched to my skull, that I am able to accomplish this HUGE milestone in my life.
Never. Never in the 12 months previous to having the offer accepted on the house would I have believed anyone that said I would be able to do this. Seriously. I could barely go to work each day, let alone make my bed in the morning. I had surgery, I was out of work for two months. I was unsure of a job scenario for this past year. I felt I couldn't leave because I was so emotionally attached to my sister's addiction. I had dinner on the table every night, a DVR in my room, a cleaning lady and a fancy new house. Let's be honest, I was living comfortably.
However, the countless times I said "I am so ready to get out", "I need to move out", "How long until I can realistically do this?" are now a reality. I am ready to get out. I am moving out. Realistically, I can do this.
It is so funny to me how my mind and body work. Before my surgery, yes I was an emotional wreck. I felt every emotion in the book and I feel like I probably even made up a few. However, I never second guessed my decision. I was confident in the fact it was the right thing for me, that I would come out of it 100% better, and I would never regret having the surgery. I was positive, sure, and always hopeful.
Brain surgery. No big deal. I was okay with it. I could do it.
Homeownership. Slightly different story. I am an overwhelmed maniac. Don't get me wrong. I am so, so excited. I can't wait to be on my own, have my own space, and be a grown up. But, there is so much fear and anxiety attached to this decision. Is this the right time? Can I live by myself? Is this the right location? (With these weather patterns, I am second guessing this more and more ... South is looking REAL good these days!) Do I want to paint this room a color? Will I have a roommate? Can I afford to live on a tight budget? Do I bother getting extra sports channels to watch the sucky Phillies this year?
I am trying to practice what I preached throughout the surgery and recovery. Stop asking what if. Deal with what is at hand. And, I know I will. I am just finding so many ways to compare these two HUGE life changing scenarios that I have dealt with in the last year. I am literally sitting here shaking my head at the fact that I was more okay with my surgery than I am with signing these papers tomorrow.
Or is it just like what they say about child birth and its been long enough since the surgery that I am forgetting all that fear and anxiety I had leading up to it?
Alright, enough. There are so many things I am confident with in this house, that I am now changing my mind. From here on out, all positives. I can't wait to have that key in my hand tomorrow. I can't wait to see the floors once they are laid. I can't wait to paint my room. I can't wait to sleep there for the first night. I can't wait to "cook" my first meal, or have someone do it for me. ;) I can't wait to see where I am going to put all my giraffe things. I can't wait to prove to myself that this is exactly what I should be doing at this point in my life.
So, this was not a very Chiari-based post, but more so an outlet to organize my chaotic thoughts.
Isn't it so cool that 13 months later my brain does hurt, BUT that its from thinking about paint colors and giraffe placement? AH! Life is Good. :)
Monday, February 24, 2014
One Freaking Year Anniversary and Some Other Good Stuff!
WHAT!? ALMOST ONE YEAR!? HOW?!
I literally can not stop asking myself (and everyone around me) how an entire year has passed since my surgery.
Like, for real.
Okay, here are my thoughts. One year, 12 months, 52 weeks, 365 days...all those hours and minutes have come and gone since what may have been the scariest day of my life. Not only have they come and gone but they have been the most exciting, exhausting, silly, mentally draining, hilarious, scary, intimidating, rewarding, eye opening, nerve wrecking, happy, sad, funny, embarrassing, and amazing year of my life. My vocabulary isn't very extensive, so therefore I am having difficulty coming up with more adjectives, but you get the gist.
Rather than reflect on each adjective, I am going to group them.
Let's get the negatives out of the way: I had a few rough weeks in the beginning of my recovery, as expected. It took me awhile to feel like myself. Once I was feeling better, I still struggled with nerve pain for a long while (still happens occasionally). My head itches lots around the incision. My baby hairs (which were shaven) took forever to grow in and always look silly in a high pony or bun. My sister still battles addiction. Hunter Pence is still in San Fran. None of my doctors became my boyfriends. --- Tough life, huh?
Let's switch gears to all the fun stuff.
All positives: As I mention in each and every post, I feel incredible, great, awesome, healthy, wonderful... (again with the adjective thing). Having surgery was the best decision I have ever made! Okay wait side note: yeah right, it was not really my decision, but I still give myself credit! ;)
After living a life in discomfort, worry, and utter pain, I am living a normal life. Normal is the perfect adjective for where I am in life right now. I am 26 years old. I wake up in the morning, have my coffee, pack and lunch and go to a job that I absolutely love (okay, lucky should be added there). I come home, go for a run, do some Netflixing, shower comfortably, and go to bed at a normal time. IT'S THE BEST!
A few more positives from the past year: My cousin in the Marines visited me in the hospital, and made my heart rate sky rocket. I got more giraffes for my collection than I know what to do with. I was visited my family and friends and showered with undeserved gifts and treats. I got to go back to work at a job that I loved, and start a new one that I love just as much. I got hooked on Homeland, Shameless, White Collar and Sons of Anarchy which made my Netflix bill more than worthwhile. I went to Nashville and saw many, many cute southern boys. I went to eight weddings in one summer. I fed a giraffe! Most importantly, the newest and most exciting news from this past year (tough to beat the giraffe feeding, I admit)...
I just signed contracts for my very first house! AH!!!
If you had told me last year, on February 24th, 2013 that on February 24th, 2014 I would be signing contracts for my very first house, I absolutely, positively, 100% would have laughed in your face. I couldn't even hold a pencil in my hand, how would I be able to sign all those papers? Today, I was able to sign paper, after paper, after paper. I didn't even drop the pen once!
I am speechless. Or well, more like typeless. As I am sitting here typing this I can not believe it myself.
I have been planning this "1 year Brainiversiary" (as I like to call it) blog for the last month. I was going to write a few quotes that inspired me this year (I still may on a different post). I was going to post a picture of my scar. I was going to tell you my latest updates, blah blah blah. However, today happened. I got home a bit ago from signing my contracts and putting down a deposit. In just one short month, I will be a home owner. YIKES!
It's funny. One year ago today, I was laying down, watching TV, with an ice pack on, freaking out that in just four days, I would be undergoing brain surgery. One of the scariest days of my life.
Today, I went to an office, held a pen, and signed my name a bajillion times and handed over a big check. Again, one of the scariest days of my life. A year ago, I would have never hoped that a year later I would still be feeling so scared. Yet, here I am, the happiest scared person ever!
So, excited, anxious, nervous rant over ... I gave myself what I think may be the coolest One Year Brainiversiary gift ever. I am movin on! AH :)
I'm sure I will do another fun blog sometime closer to Friday, but I needed to let out some of my fears, excitement, and overwhelming craziness! YAY!!!
Also, holy adjectives in this post, huh? ;)
I literally can not stop asking myself (and everyone around me) how an entire year has passed since my surgery.
Like, for real.
Okay, here are my thoughts. One year, 12 months, 52 weeks, 365 days...all those hours and minutes have come and gone since what may have been the scariest day of my life. Not only have they come and gone but they have been the most exciting, exhausting, silly, mentally draining, hilarious, scary, intimidating, rewarding, eye opening, nerve wrecking, happy, sad, funny, embarrassing, and amazing year of my life. My vocabulary isn't very extensive, so therefore I am having difficulty coming up with more adjectives, but you get the gist.
Rather than reflect on each adjective, I am going to group them.
Let's get the negatives out of the way: I had a few rough weeks in the beginning of my recovery, as expected. It took me awhile to feel like myself. Once I was feeling better, I still struggled with nerve pain for a long while (still happens occasionally). My head itches lots around the incision. My baby hairs (which were shaven) took forever to grow in and always look silly in a high pony or bun. My sister still battles addiction. Hunter Pence is still in San Fran. None of my doctors became my boyfriends. --- Tough life, huh?
Let's switch gears to all the fun stuff.
All positives: As I mention in each and every post, I feel incredible, great, awesome, healthy, wonderful... (again with the adjective thing). Having surgery was the best decision I have ever made! Okay wait side note: yeah right, it was not really my decision, but I still give myself credit! ;)
After living a life in discomfort, worry, and utter pain, I am living a normal life. Normal is the perfect adjective for where I am in life right now. I am 26 years old. I wake up in the morning, have my coffee, pack and lunch and go to a job that I absolutely love (okay, lucky should be added there). I come home, go for a run, do some Netflixing, shower comfortably, and go to bed at a normal time. IT'S THE BEST!
A few more positives from the past year: My cousin in the Marines visited me in the hospital, and made my heart rate sky rocket. I got more giraffes for my collection than I know what to do with. I was visited my family and friends and showered with undeserved gifts and treats. I got to go back to work at a job that I loved, and start a new one that I love just as much. I got hooked on Homeland, Shameless, White Collar and Sons of Anarchy which made my Netflix bill more than worthwhile. I went to Nashville and saw many, many cute southern boys. I went to eight weddings in one summer. I fed a giraffe! Most importantly, the newest and most exciting news from this past year (tough to beat the giraffe feeding, I admit)...
I just signed contracts for my very first house! AH!!!
If you had told me last year, on February 24th, 2013 that on February 24th, 2014 I would be signing contracts for my very first house, I absolutely, positively, 100% would have laughed in your face. I couldn't even hold a pencil in my hand, how would I be able to sign all those papers? Today, I was able to sign paper, after paper, after paper. I didn't even drop the pen once!
I am speechless. Or well, more like typeless. As I am sitting here typing this I can not believe it myself.
I have been planning this "1 year Brainiversiary" (as I like to call it) blog for the last month. I was going to write a few quotes that inspired me this year (I still may on a different post). I was going to post a picture of my scar. I was going to tell you my latest updates, blah blah blah. However, today happened. I got home a bit ago from signing my contracts and putting down a deposit. In just one short month, I will be a home owner. YIKES!
It's funny. One year ago today, I was laying down, watching TV, with an ice pack on, freaking out that in just four days, I would be undergoing brain surgery. One of the scariest days of my life.
Today, I went to an office, held a pen, and signed my name a bajillion times and handed over a big check. Again, one of the scariest days of my life. A year ago, I would have never hoped that a year later I would still be feeling so scared. Yet, here I am, the happiest scared person ever!
So, excited, anxious, nervous rant over ... I gave myself what I think may be the coolest One Year Brainiversiary gift ever. I am movin on! AH :)
I'm sure I will do another fun blog sometime closer to Friday, but I needed to let out some of my fears, excitement, and overwhelming craziness! YAY!!!
Also, holy adjectives in this post, huh? ;)
Sunday, January 12, 2014
Challenge Accepted
I am sitting here. Unsure. Unsure how to start this blog. Unsure of why I chose to write one in this moment. Unsure of how honest to be. Unsure of myself.
Amy Has a Headache was a blog I decided to write to put a positive spin on Chiari, the before, after and all between. In my opinion, I have done a good job of doing that. Chiari can suck it. It hurt, I fixed it. It caused me to live limitedly, I am now living free and easy. It was a major obstacle in my life, I overcame it.
However, I am sitting here finding myself wanting to ,once again, vent about another disease affecting my life. It's not my disease and yet it affects my health, my family's health daily.
Addiction. I have said it before and I will say it forevermore. I would never wish addiction, of any sort, on anyone.
In my last post I mentioned the colorful chain I was hoping for in 2014. This past weekend, unfortunately, added two black links. My sister continues to struggle with her battle and as are we. She believes we are naïve, that we don't see the things she does ... right in front of our eyes.
Addicts are full of fear. Actually, as I am sitting here typing that... I think I mean I fear addicts. I fear what she is capable of. I fear of what she thinks. I fear what she feels. I fear her actions. I fear it will come to her being back on the streets. I fear she will end up in jail. I fear she will not be able around in a few months. I fear she will never get a chance to be my maid of honor. I fear I will never want her to be around my future children. I fear there will be a time we don't find her, or worse...we will, too late.
I have been dwelling on these thoughts the past 24 hours. How do I make myself at peace with this? How do I help my family get through this? How do I continue living the way I love to, with a heart-felt smile on my face? How do I support her with the amount of anger and resentment I have towards her? How do I help someone that isn't willing to be helped?
Then, I saw... my girl, Julianne Hough, posted something on social media today that said:
"Make today more beautiful by uplifting a stranger's day."
Exactly. How many times have I said, "everyone has their shit"? Everyone is going through something. Some, dealing with exactly what I am dealing with. Some, dealing with deaths or illness in a family. Some, dealing with divorce or heart break. Some, problems at work. Some, dropped their coffee this morning. Some, running late. Some, just having a bad day.
I don't know what the lady sitting next to me at church is dealing with. I don't know what the Dunkin Donuts drive thru attendant has going on. I don't know why that person on the road cut me off or why they are in a rush. I don't know how the guy pumping my gas is feeling today. I don't know, but...
After I saw the quote I found myself thinking back to the MANY things that strangers have done to make me smile, when they too, had no idea what I was going through. For starters: someone sharing a smile, someone complimenting my new boots, someone letting me in front of them as I try to merge, someone in line allowing me to go first, someone in line before me paying for my coffee, someone in the craft store handing me something they made, when wearing a jersey - someone saying "Go Steelers", someone telling me I look like a celebrity (Penny from Big Bang among one of my favorites!). How simple are these things?
Why shouldn't I take the challenge to make a stranger's day better? Didn't I preach that during my surgery? Didn't I say a bajillion times that the random acts not only from people I know, but even more so those random acts from strangers are what kept my smile through it all?
Why aren't I practicing it more? How can I practice it more?
I don't have the perfect answer yet. But, for now, I will continue to flash my smile at a passer by. I will continue to use kind words. I will continue to compliment. I will continue to share my positive stories. I will continue to make silly comments. I will continue to laugh out loud. That is where I will start.
How will you?
Amy Has a Headache was a blog I decided to write to put a positive spin on Chiari, the before, after and all between. In my opinion, I have done a good job of doing that. Chiari can suck it. It hurt, I fixed it. It caused me to live limitedly, I am now living free and easy. It was a major obstacle in my life, I overcame it.
However, I am sitting here finding myself wanting to ,once again, vent about another disease affecting my life. It's not my disease and yet it affects my health, my family's health daily.
Addiction. I have said it before and I will say it forevermore. I would never wish addiction, of any sort, on anyone.
In my last post I mentioned the colorful chain I was hoping for in 2014. This past weekend, unfortunately, added two black links. My sister continues to struggle with her battle and as are we. She believes we are naïve, that we don't see the things she does ... right in front of our eyes.
Addicts are full of fear. Actually, as I am sitting here typing that... I think I mean I fear addicts. I fear what she is capable of. I fear of what she thinks. I fear what she feels. I fear her actions. I fear it will come to her being back on the streets. I fear she will end up in jail. I fear she will not be able around in a few months. I fear she will never get a chance to be my maid of honor. I fear I will never want her to be around my future children. I fear there will be a time we don't find her, or worse...we will, too late.
I have been dwelling on these thoughts the past 24 hours. How do I make myself at peace with this? How do I help my family get through this? How do I continue living the way I love to, with a heart-felt smile on my face? How do I support her with the amount of anger and resentment I have towards her? How do I help someone that isn't willing to be helped?
Then, I saw... my girl, Julianne Hough, posted something on social media today that said:
"Make today more beautiful by uplifting a stranger's day."
Exactly. How many times have I said, "everyone has their shit"? Everyone is going through something. Some, dealing with exactly what I am dealing with. Some, dealing with deaths or illness in a family. Some, dealing with divorce or heart break. Some, problems at work. Some, dropped their coffee this morning. Some, running late. Some, just having a bad day.
I don't know what the lady sitting next to me at church is dealing with. I don't know what the Dunkin Donuts drive thru attendant has going on. I don't know why that person on the road cut me off or why they are in a rush. I don't know how the guy pumping my gas is feeling today. I don't know, but...
After I saw the quote I found myself thinking back to the MANY things that strangers have done to make me smile, when they too, had no idea what I was going through. For starters: someone sharing a smile, someone complimenting my new boots, someone letting me in front of them as I try to merge, someone in line allowing me to go first, someone in line before me paying for my coffee, someone in the craft store handing me something they made, when wearing a jersey - someone saying "Go Steelers", someone telling me I look like a celebrity (Penny from Big Bang among one of my favorites!). How simple are these things?
Why shouldn't I take the challenge to make a stranger's day better? Didn't I preach that during my surgery? Didn't I say a bajillion times that the random acts not only from people I know, but even more so those random acts from strangers are what kept my smile through it all?
Why aren't I practicing it more? How can I practice it more?
I don't have the perfect answer yet. But, for now, I will continue to flash my smile at a passer by. I will continue to use kind words. I will continue to compliment. I will continue to share my positive stories. I will continue to make silly comments. I will continue to laugh out loud. That is where I will start.
How will you?
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