10.

 I have no intention of making this a long post, but if you’ve read my blogs in the past, you know I sometimes can’t help myself. 

Today is my 10 year Brainaversary. 10. Ten. TEN. How? It truly is unbelievable to me. 

I can still feel the pit in my stomach from the day I heard I needed the surgery. I can still feel the fear of having to leave my class and my coworkers I had come to love. I can still feel the love and support I had the short few weeks leading up to the surgery from all the texts, calls, and surprises from friends, family and strangers. I can still hear the talks about the surgery and what the recovery would be like a bajillion times with my mom and dad. 

I can remember so vividly the morning of, getting poked and prodded... starving, explaining what I understood of the surgery to each and every doctor, nurse, and surgeon that came in. I can remember giggling with my mama and daddy about finding a husband while on the table. I can remember pulling my hands away from them, tears in my eyes as they wheeled me to the OR. 

I can physically feel the “firey” feeling along my incision, the tingling along my neck, and the pounding behind my eyes. I can remember wanting ice pack after ice pack, none of them cold enough to ease that “firey” pain. I can remember the first time I lifted my head, moving that bowling ball for just a quick second felt like the only activity I could do for days. 

I remember the texts, the visitors, the gifts, all the rest, the cozy blankets, the loose shirts, the pig tails, the sponge baths, the long binging hours of Homeland. I remember my “outings”, sitting on the porch, short car trips, and my parents packing up my childhood home to move. 

I remember the medications, the pain, the endless ice packs and the gross glue and scabs my mama picked from the scar. 

I truly feel like I could write a million more vivid details that I remember from those long weeks ten years ago. TEN. 

and yet... the surgery also feels like a lifetime ago. My mama and daddy as my caretakers, living in my childhood home, accepting job offers for maternity leave after maternity leave, constantly “joking” I’d never find my husband. 

I know ten years is a long time. But my life has been turned upside down in ten years. I found a job I love, made friends who are family, I met my husband, lost my mom, traveled a lot, got engaged, my dad got sick, bought our forever home, we got married at the best wedding ever, we lost my dad, I found out I was pregnant, the pandemic hit, we had Brooksy, and just 13 months later we had Bruin. There were some other good and not so good events during the last 10 years, but those are the biggies. 

I am so thankful for my surgery 10 years ago. Without it, I am certain I would not be living the life I live today. I would not have been able to physically endure any of those major life events, good or bad.

I had started this blog 10 years ago to be sure there was at least one resource out there that put a positive spin on Chiari Malformation and decompression surgery. I am completely, whole-heartedly positive that I am able to live my life the way I want because of my successful surgery. 

As usual, no idea how to end this... I was going to say “Amy Had a Headache”, but actually, I had a headache last Wednesday that kept me home from school. 

So sometimes, yes, I still have symptoms. But I almost, sort of, welcome them when they come as it is a clear reminder how I used to suffer daily. Thankfully, the severity is rarely debilitating and I am able to power through. 

I guess I’ll just end it with a “Amy Had a Headache (and still does sometimes but that’s okay because, perspective). 💛

The More Things Change...

Five years later and that is how I feel: the more things change, the more they stay the same. 

Tomorrow will be my Five Year Brainiversary.  I read back to the first few blogs I wrote and man, Bon Jovi knew a bit of what he was talking about.  

Change: 

Mama.  The biggest change. My LEAST favorite change. She passed away August 12th of this past year.  She lived a life of happiness, passion, kindness, honesty and loyalty.  She was by far the strongest woman to walk this earth, dealing with any and all hardships with grace.  We miss her eye rolls, silly giggle when she thought she was funny, her playing on her iPad at night while Daddy has sports on, her honest opinion on things, her tough love and her commitment to her friendships and family.  When I had my surgery, my mama bathed me, picked my scabs, dealt with my pain and tears.  She went to every appointment, even in a wheelchair!  She was my best friend, my rock.  

Same: 

Mama. We don't go a day without laughing at something Mama said, reacting to things that happen the way we know Mama would want us to, laugh at ourselves when we say something funny, or try to look at the positive of things like she always did.  We say "It is what it is" ... often.  We feel her presence in every family occasion, all the silly moment with the girlies, and I can hear her voice when I am becoming negative about something.  She is still our rock.  Just a rock in heaven...or okay, I guess she can be an angel now. 

Change: 

Love.  MY FAVORITE CHANGE!  I have met the love of my life. The one that laughs at my silliness, rolls his eyes at my ridiculousness, loves my crazy and my family's crazy, he loves my laughs and wipes my tears (more than he ever bargained for).  He stuck by me through the hardest time of my life.  Not only did he stick by me but he fell in love with me through the hardest time.  I think it was some famous person, Marilyn Monroe or someone? who said "If you don't like me at my worst, you sure as hell don't deserve me at my best." I may have added the curse word or confused some of the saying (I do that a lot), but I think Matt deserves the best of me from this point forward.  He is everything I could have imagined and more.  I am the luckiest girl that he picked me.  I thank God daily for sending me my most favorite blessing at exactly the right time.  He really does know what He is doing. 

Same: 

Love. I still love pickles, chips, giraffes, Pittsburgh Sports, Hunter Pence, the beach, and life.  Okay, this one was a stretch.  I read back to my praying for a man to want me for all of who I am, and I just ... I just am so lucky.  Have I mentioned that yet? 

Change: 

Chiari.  The tingling and weakness in my left side has subsided.  I have begun taking anxiety medication as well as B12.  Both have seemed to support the decrease in the tingling.  My "Woody Arm" has shown up much less and I am no longer seeing the neurologist regularly, as I feel pretty comfortable more often than not. 

Same: 

Chiari: I still have headaches.  Just last week I was down for a full 36 hours.  I have had a nasty cough, so I am assuming that is what triggered it at some point.  I still wear an ice pack often, I would say on average at least once a week.  I still rely on Advil to take the edge off.  I still worry when I feel the weakness in my left arm or when I gag when I brush my teeth.  I still thank God for the surgery, the doctors, the success I had.  I look back at my fears and the pain I had.  I am so thankful for the push to have the surgery.  As I say in almost every blog, I think I still get headaches so I remember how bad it once was... 


Change: 

The Three of Us (siblings): Mama is not here. That is the biggest change, even with them.  She is not here to support Daddy when things get rough.  She's not here to tell Jackson to relax and walk away when he gets loud and angry, tell him to stop impulsively spending money, to stop making her laugh when she's mad at him. She is not here to tell Maggie to save her money a certain way, question where she is, practice tough love when needed.  She is not here to help me buy a wedding dress, wedding plan, organize all the crap Matt and I have in our house.  We are all dealing with things daily that we wish our Mama was here to help us with, and we have to find a new way to deal with it.  Some may say we were all TOO dependent on our Mama girl, but I think it is fair to say we were just blessed to have that kind of relationship with our Mama.  

Same: 

The Three of Us (siblings): We are the same.  I am here for everyone as much as I can.  Chat with Jackson a couple times a week, have dinner with him and Dad pretty often.  Maggie is still struggling with her demons of addiction and as hard as it is, I have still tried to practice the tough love that my Mama has taught me over the years.  I feel like the three of us have a special bond.  We have been through literal hell and back.  As per our usual ways, Jackson and I communicate pretty well.  We have found a peaceful place where we can really talk about our grief, laugh about our memories, and discuss our fears. I can only speak for myself, that I still hope Mag can join us some day in this happy bond. We love her more than words can describe.  But, as it has been for the last ten years, we love her, not her addiction.  Five years ago when I went in for my Chiari brain decompression surgery, my sister was at a rehab in Florida.  Today, I dropped her off at the airport, for her to once again go to a rehab in Florida.  As I was five years ago, I am still hopeful she will find her purpose, her peace, and her faith in the world.  Feeling all the same. 


Change:

Daddy. He is skinnier than he's been in years, he joined a golf club he always said he would, he eats left overs that he never would and now he has to say that I am engaged.  He never thought he'd see the day!  He has to make decisions about the three of us, alone.  He has to grocery shop and cook for himself (and Mag and Jax depending on who is home).  He has to text me (back) each morning and every night before bed.  He has to go out to dinner with me often, spend time with my boyfriend, and answer my calls every day after school.  He has become my Dada (mix of Dad and Mama - I promise I don't call him that!) I have always loved and admired the man my dad was, but I never appreciated him more than I have in the last six months.  Although my guy is no handy-man like my daddy, he shows the same examples of love, strength and commitment that Daddy always has.  As I watched my dad these past six month, I have determined those are the most important qualities I need in a man ... again, how did I get so lucky to not only get a Dad who showed me that worth, but now found a guy who exemplifies that worth. 

Same: 

Daddy. My dad is my best friend.  I can count on his black and yellow hearts daily, his answering of a phone call always (or I panic), his maintenance, and his telling me to quit worrying "its okay"-ness".  I can always count on him.  No. Matter. What.  He will literally bend over backwards for his family and that has never changed. He is smiley, thinks I am so funny, and although we don't always see eye to eye on certain things in the world, he is still my number one fan.  I have always loved him mostest and I will always say that Maggie, Jackson and I are the luckiest kids in the world to have grown up with a man who has shown us the meaning of family and love. 



I am rereading this and realizing this is kind of a boring post.  I needed to organize my thoughts and I think this helped me a bit.  So for all of those that don't know me as well and were hoping for more Chiari, I apologize.  For those of you that do know me, and know the circumstances of life these days, I apologize for the blah-ness.  

I want it to be known that I still LOVE work.  I feel like I haven't been the best I can be the past six months as life has taken a toll on me, however I still look forward to going each day.  Matt jokes about moving occasionally and I always look at him wide-eyed and say "NO! I can't leave my job!" ...and I mean it.  I am so lucky to work with the support system I do.  They make me laugh daily, allow me to cry, whine and complain when I need, and turn my mood around no matter what.  

I am once again running a 5k at the end of March, something I would never have guessed I could do 5 years ago. 

I am planning a wedding, something I would never have guessed I would do 5 years ago.  

I am able to open the windows in my house, something I would have never guessed I should do 5 years ago.  

5 years ago, I had Chiari Brain Decompression Surgery.  Since then, EVERYTHING has changed.  Since then, so many things feel exactly the same.  How is that even possible?  

As always, I am thankful, I am blessed, and overall I am truly happy.  How in the world, after all this change, despite all the things that feel the same, did I get so lucky to always feel that "Life Is Good"? 

Four Years and Still MOOving On

Get it? Funny pun for my cow heart in my brain.  

Last week was my Four Year Brainaversary.  I have started this blog literally four times in the last four months and just have had the hardest time deciding where to go with it.  

Everything in my life feels very surreal.  Surreal in all aspects of the word: life feels unreal, it is bizarre, feels so strange, and dreamlike in both fantasy and nightmare.  As many of you know, I do all I can to find the positive in all negative situations, however it has been extremely hard lately to find the positives. 

After months of trying to decide how to begin, and months of therapy trying to organize my thoughts, I decided I would break down the four most "surreal" things happening in life right now.  Except now I am even second guessing if I should be writing the happy or the sad first. 

One. Chiari.

I have had a lot of headaches and a lot of tingling in the left side of my face and on the left side of my body.  It had been months of me trying to make people "see" the tingling, even though they couldn't.  I was convinced it was all in my head (another pun).  After weeks, I finally caved and called the doctor.  I hate the phone and I know that is a lame excuse, but it took me forever to finally make the call.  I did get an appointment with a new doctor (since my surgeon won't do anything after I see the neurologist).  

So, I went to Drexel Institute of Neurosciences and really had a good experience.  They really sat and listened, looked at my previous scans, asked further questions, and did a full neurological work up.  It was really interesting to have them do certain tests and show me the weakness that is clear in the left side of my body, specifically in my arm.  They did a test with a safety pin seeing if I could feel the sharp and dull edge.  It freaked me out at some point because I could see them physically poking me but did not feel the sharp sensation at all.  Anyway, long doctor visit, short, they have determined that my C5-C7 are affecting these parts of my body.  This is very common in people who have Chiari and especially after decompression surgery.  Basically there is a fluid filled cavity called a syrinx that has formed on my spinal cord, it is chronic and it destroys the surrounding nerve tissue.  They did put me on a medication to subside the tingling and headaches. 

After a couple weeks, I have noticed less tingling which is good, however the medicine makes me feel a little loopy, so I am not sure how long I will or should stay on it.  I go back in two weeks with new scans that they had ordered and hopefully can discuss other treatment options.  I feel like after three and a half years of really feeling great, I was a little discouraged that things felt "wrong" again.  The fact that some of my old symptoms and now some new felt so surreal, how come it had to all come back?  The headaches I can usually deal with, the tingling is annoying, gagging every time I brush my teeth is gross, and the weakness in my left arm feels like the "Woody Arm" I once had in my right side.  But thats it, I won't complain more.  I am happy there was a reason for it all, that I wasn't crazy.  I am happy there are treatment options that are not surgery.  I am happy I liked my doctors, that they listened to my complaining, that they knew what what causing the symptoms and that that they had a plan of action.  For that, I will stay positive. 

Two. Probably the most surreal.  My Mama.

If you've read before, you know she is battling stage IV breast cancer, has been in and out of the hospital a couple times with fluid in her lungs and really struggling to breathe, has worn oxygen since July, and has progressively been feeling worse and worse.  As of July, mom was walking 10,000 steps a day, even the first few weeks with the oxygen on.  She is now struggling to walk the 30 steps to the bathroom without feeling short of breath and needing to sit down due to heavy legs.  She doesn't really like to drive, she has to limit her activities to one lunch or one outing a day.  She is still trying to keep her body strong with Restorative Yoga and Personal Training with no cardio.  In her typical, strongest person I know fashion, she has stayed her positive, and yet realist self.  

After a really long, really emotional and really overwhelming appointment at the pulmonologist, we were told that treatment options have pretty much run out.  If the lung disease follows the course it has already, that sooner than later, it will be the lung disease that kills her.  This was devastating news and for me shocking.  Mama knew she wasn't feeling well and that something wasn't right.  I knew she wasn't herself but I didn't realize how bad things had become and how there was no clinical chance of it turning around.  To hear those words coming out of the doctors mouth, was truthfully a traumatic moment of my life.  This happened almost two weeks ago and since then I have not gone a day without crying over the fear of losing my mom "sooner than later".  I have relived the moment over and over again, and as I sit hear typing it I am tearing up.  I have had the nightmare of an appointment replay in my brain during my sleep, during mid-conversation with friends, while working … it won’t go away.  Again, it feels surreal.  

I can’t understand how after all we have been through, after she has been so strong, and I am not exaggerating, THE STRONGEST person I know, this disease chose her.  I have tried so many times to not ask “Why me?” but this time I will never understand “Why her?”.  My mama has a support system that has been nothing short of perfect through her diagnosis and throughout this process.  I know from my own experience that the love and support you feel from your family, “real friends”, best friends, friends, neighbors, strangers mean the most.  But I also know the exhaustion of putting on a happy face when there is pain.  I know my mama feels it sometimes.  She is tired.  She is out of breath.  She is struggling to feel any sort of “normal” right now.  And more than anything, she hates making people feel sad.  

I have always been one of the few people that can find a way to get her out of a funk (even if I have been the one to put her in it) as she has been for me.  And now, I can’t.  I can’t do anything to fix this.  I have mentioned many, many times how close her, my dad and I are.  I have mentioned that they are my best friends.  We laugh together, dad listens to us cry and bicker, we go out to lunch, we love our PHole nights out, we go for random bike rides and walks.  Mama and I love to go out when we are bored and she makes me spend money on things I don't need but just want.  She comes over when I am indecisive about what decor I want to switch up in my house.  She explains instructions how to bake the banana bread for the twelve millionth time without ever getting annoyed that I can’t remember.  She is the first person I text when I wake up, first person I call after school, and pretty much don't go a night without saying goodnight.  It may be too much dependence on a Mama for me, an almost 30 year old…but is it too much dependence on a best friend?  I’m not writing this for pity on me, I am not writing this for pity on her.  I am writing this because I am terrified of not having my best friend around all the time.  More so, I am afraid of my best friend not feeling well enough that she wants to be around.  I am scared.  I know she is too.  I know we are allowed to be.  I know we are allowed to feel…. well everything we feel. I know there are no words of wisdom.  I know I have to let God work his plan.  I know I can pray and pray hard.  I know that we have to keep hope.  I know we have to be realistic.  I know we have to plan.  I know we still are together now.  I know.  But, it doesn’t make any part of this even an ounce easier.  

That was probably the longest, most unorganized, emotional, hot mess of a paragraph I have ever written, but the emotions and anxiety is so raw that I truly don’t have it in me to go back and read it, proofread it, or even attempt to find a positive spin.  I am sorry. 

I needed to take a break after writing the first part of that blog.  After the last twenty four hours of little sleep, constant crying, a killer headache, anxiety that physically hurts, I am sitting here at the airport waiting to pick up my daddy.  The sun is starting to shine, which always makes me feel better.  I am trying to breathe in and out slowly and really remember the blessings I still have in my life.  That of which, brings me to the next surreal part of life. 

Three. Siblings.

My sister is back home for good (for now).  After going through years and years of her own hardships, after me feeling every emotion towards her and unsure we would ever really get along again, I can honestly say I am very thankful she is home.  She had a traumatic experience of her own living down in Florida, nothing of which had to do with her own choices, and therefore decided it was time for her to come back home.  Mama and Daddy let her come back home.  For being empty-nesters, they now have quite the full house again.  Mag and her boyfriend and Jackson are all living with them.  They all have jobs that they are enjoying.  They are all pitching in in all ways to help mom and dad with chores, dinners, rides, etc.  And more than anything, they are there mending so many of the broken emotions we have all felt over the last six or seven years.  

I know I don’t live there any more, but being “home” at Mama’s over the last four years has meant me, mom and dad having dinner, watching sports, etc.  Now going “home” means, Maggie’s loud voice and ridiculous humor, Jackson bothering us all and annoyingly making us laugh when we definitely don't want to, Brandon’s quiet pacing around the house, the door opening and closing a million times a day, noises in the house I don't ever remember hearing, a full table at dinner, and as Mama would say, a VERY high grocery bill.  I know I keep saying it but everything I knew about my life literally four months ago, is completely the opposite.  Nothing feels the same.  I hate it, but I do love feeling like my family is in tact again.  

Four.  Friendships and stuff.  

I have said millions of times I can not believe how lucky I am that I still have friends who love and support me through all the crappy stuff I’ve been through the past few years.  It feels surreal that one person could have such a support team.  I say that, except I am pretty sure I wrote yesterday or the day before about Mama’s support system being the best in the world.  I like to think because I am so much like her, that I stole lots of her support system when I needed it!  

As far as my girlfriends, I need to thank all of them who have checked in and listened to my venting and asked how I am doing.  

I need to thank my work best friends, who over the last two weeks have been extremely supportive during my constant crying, billions of breakdowns, the giggling fits I can get in, and quick changes in my emotion.  Lately even the littlest thing can set me into either direction of emotion, and they have been patient and accepting of my ridiculous ways.  

I also want to thank the guy who puts up with my crazy emotions lately as well.  He finds ways to make me smile even though he “bothers me” at times.  He did not sign up for this when he started dating me, and yet he has stuck with me through the start of this crazy emotional roller coaster.  

I am thankful for all the people who have sent me surprise gifts, cute cards, all the positive thoughts and all the prayers.  I am so lucky.  

This is not a positive blog.  I do not feel positive right now.  I am having the hardest time feeling like me lately.  Everything I knew just a few months ago, has turned upside down.  I know Mama and Daddy feel the same way.  I know we are scared.  I know we are anxious.  I know we are so sad.  But trying to find the positives, I know we are in this together.  I know we are each others’ own best support system and I know that we will find a way through this tough obstacle God is throwing our way.  I know at some point in this process we may need to just Let Go and Let God.  For the time being, I need to pray and pray hard.  I need to keep my positivity for my own health, for my mama’s health and sanity, for my daddy’s strength, for my sister and brother’s sobriety, for our new normal.  

I saw a quote this morning that said… 

“All you need is hope and strength.  Hope that it will get better, and strength to hold on until it does.”  

I feel like the defines the way my family as a whole feels right now.  Thank you for all the prayers sent our way.  

All In...

I have never been one to play poker.  One, I am not competitive, two, I don't know the Texas kind from Full House and three, I am always "All In". 

All In.  Although it may be one of my greatest strengths, it is also my deepest flaw.  Or... whatever that saying is.  

Mama.  I am all in when it comes to my family.  My mom was in the hospital for thirteen days and there wasn't a day I didn't spend time with her.  I couldn't imagine not being by her side as she was going through a lot of unknowns.  Did she need me there?  She will tell you no.  But, for my own sanity, to calm my own anxieties, I needed to be  there. I needed to be all in.  

My siblings.  It has been so hard for me to practice tough love over the years.  I couldn't stand the idea of not being able to do anything for them.  There have been many, many times when I have taken them out to eat, bought them something they needed, offered them money.  Over the years I have learned the difference of enabling and helping in recovery, but it has been very hard.  With the two of them, I find it hard to not be all in or all out.  I am having trouble finding that safe distance where I can love them, support their decisions and still have a positive relationship with them.  So, I do thank them both for being patient with me as I find that happy place. 

Dad. He always gets gipped.  He is the greatest guy in the whole world, who is also ALL IN when it comes to his family...well and his Pittsburgh sports.  He is my biggest supporter, is my maintenance man, my best audience and my favorite sports fan.  I am all in when it comes to thinking he is the greatest man, and all in in believing I will find someone like him someday.   

Chiari. I was talking to my therapist recently about how hard it is for me to commit to plans.  I said it is silly because if someone calls me the night before or morning of, I am almost always up for doing it.  This past weekend my mom and dad wanted me to come to the shore on Friday night.  I said, "maybe".  Packed a bag Friday morning, talked to mom Friday at lunch and still gave her a "I'm not sure."  I did end up going, but why the heck could I not just say yes?  I do the same thing with friends and dates and trips.  It is always things I want to do but I always think, "but how will I feel?"  When I explained this to my therapist, she said, "Do you think this stems back to Chiari?"  Umm.. YES. How have I not thought of this?  There were days, months, really years where I had to cancel plans or I had to leave in the middle of plans due to headaches and other symptoms.  She reminded me that even though I make plans, I don't have to be "all in".  I was reminded that sometimes plans change, sometimes it is okay to be spontaneous.  I was reminded that even "normal" people are hesitant to make plans, that sometimes that is just a personality trait.  I fear that it makes people frustrated that I won't commit to things, but I just can't be "all in" with plans, at least not yet. 

Work. I have said it once, have said it again, and will say it a million more times.  I LOVE my job.  I love going to work every morning.  I get to work with some of my greatest friends, spend time with some of the silliest kids, and work in a town with lots of support.  Just the other day my friend and I were sitting with the kids on the carpet and she whispered to me, "How lucky are we?"  I can't say enough how lucky I am. However, being "all in" when it comes to work can get me emotional, anxious, and in trouble sometimes.  Okay, not real trouble, but it is troubling to have so much passion for what you do, for your students, and not be able to do more for some.  I know there are obstacles: budgets, laws, codes, etc. but as a teacher, finding a happy medium, coming close to that fine line gets to be so difficult.  I have had a great year so far, and really hope I can continue to remember to not be "all in" all the time.  

Friends.  This is one of the hardest things.  Friendships in your twenties is hard. So many of my friends are seriously dating, moving in with their significant others, getting engaged, married, having babies... and I am still Netflix and Chill-ing ... alone.  Don't get me wrong, I have the greatest friends and I know that they are all there for me no matter what.  But, when life gets in the way, it is so hard to be "all in" in friendships.  And, as the pattern shows, I have a hard time not being all in.  I find myself getting upset when my friends are going through these exciting times of their lives and I am not there yet to enjoy similar things myself.  Don't get me wrong, as I always say, I KNOW it will all work out, no pity needed. I also enjoy spending time with my friends, their significant others, seeing new houses, going to weddings and baptisms and birthday parties.  I just wish I could feel "all in".  I am not sure this paragraph is making sense, and I don't want it to seem like a negative.  I think it is just part of life, that friends are "growing up" at different paces and relationships change.  I am lucky to have friends that will understand what I mean and know that I am here for them no matter what. 

Love. ...or whatever we want to call it.  Relationships?  I think lately this is where I have seen the flaw more than the strength, and where I believe some day, when I find the right person, being "all in" will once again be a strength.  I am not the best dater, it has been evident if you have followed my blog.  It is rare I find someone that I connect with and believe it could be more.  When thinking about it, and after discussing it a bit, I think I have realized that maybe that is the problem when I am dating.  I am ready to be all in.  I am ready to be at the next step in my life, and I let it be known...and maybe too soon.  I am a very honest person, again, one of my best traits, but also one of my biggest flaws.  I need to not be all in on day one. I need to "play the game" as they say.  

Man, maybe this is why I don't play poker...too many rules! 

I know this was an odd blog, but "All In" was just an eye opening (ear hearing? heart felt? brain busting?) phrase. 

Beyond all of the above, I am all in in terms of my love of airplanes, giraffes, pickles and chips.  I am all in with my love of sports, specifically Steelers, Penguins and Phillies.  I am all in with my love of life.  

Yes, it is so damn hard, but all in all, it is so damn great.  

I KNOW!

I have started this blog about five times in the last two months.  I have tried to organize my thoughts, organize my feelings, and organize my wants.  It has been so difficult to understand all the emotions I have felt over the last two months.  

I have been told a couple times over the past months that I am different than some.  People like to deal with things on their own, they don't need to talk about their feelings, they don't need to have it be heard.  If nothing else in the last few months, I have learned, I need to be heard.  I need to express the way I feel.  I need to be honest.  I don't like constantly questioning how someone is doing, how they are feeling.  I don't want anyone to have to feel the way I feel when I am wondering.  I want you to know where I stand, always. Maybe a flaw...but I am who I am.  

I've blogged about life having a funny way of sneaking up on you, and lately, that is exactly how I feel. 

I am almost 29 years old.  I have had brain surgery. I have had a number of deaths of friends and family.  I have a mom who has now had cancer twice, and spent a good amount of her summer in the hospital.  I have a sister who is an addict and still struggles daily with her recovery and relationships with us. I have a brother who is also an addict and although he struggles with his recovery, he is aware of his disease and he keeps his relationships with us to help with his journey.  I have a best friend who lost a parent this summer in a freak accident and is dealing with a roller coaster of emotions daily.  I have gotten out of a relationship that although I am sure he wasn't the one for me, I was hurt.  I have tried to "put it into the universe" as my therapist says, what I want in a relationship, what I think I deserve, and honestly I feel like I am losing faith in it happening or being out there. 

I didn't write that paragraph for this to turn into a pity blog.  In no way to do I want that. 

This summer I also had a chance to spend a lot of time with my parents as we spent weeks in the hospital with my mom.  I was able to spend some time at the beach.  I saw my college friends a couple of times and even had a day at the zoo. I celebrated my best friends baby's first birthday.  One of my best friends found out she's having a baby.  I was able to spend almost a whole week in North Carolina with my cousin and her new perfect baby boy.  I was able to go to some happy hours with friends.  I was able to binge watch a couple Netflix shows.  I was able to spend time with my best two work friends setting up our classrooms.  I was able to start a great school year, again, with my two of the greatest friends. I was able to go on a couple dates that were really fun. I really had a nice summer, I do not mean to complain. 

Yesterday I was down the shore, and I had the chance to walk down to the Chiari walk that was just down the street.  There were a lot of people there that have Chiari, had the decompression surgery, waiting to have it, or walking for someone who does.  We saw children and adults struggling with the condition daily.  I really do forget sometimes how lucky I am to have such a success story from my surgery.  I have mentioned before that I am glad I get a headache here and there still.  It reminds me the lifestyle I once lived and all the reasons the surgery was the best thing that ever happened to me. I am so lucky that I am sitting here writing a blog that really has nothing to do with my difficulties with Chiari ... sorry to those of you that check in just for those updates!

I know this is life.  I know there are ups and downs.  I know there are days, weeks, months at a time that are exciting and seemingly great.  I know there are days, weeks, months at a time that seem hard, seem impossible to get through.  

I know all that. I know that life is 10% what happens to you, 90% how you react to it. I know that I like to be positive. I know I like to have faith that things will work out the way they are supposed to.  I know I like to have fun, spend time with my family, my friends. I know that God has a plan and He will guide me the way I am supposed to go.  I really do know. 

But it doesn't make some of these days easier.  

Some days I am sad.  I am sad that my mom is sick.  I am sad that my sister isn't talking to any of us right now, which makes us believe she's using again.  I am sad that so many of my friends and cousins are having babies and I am so far from that.   

Some days I am mad. I am mad that God is putting my mom through all of this.  I am mad that my best friend has to deal every day with the loss of her father.  I am mad that addiction can take people from me.  I am mad I am not better at dating. 

Some days I am happy.  I am happy I am close to my parents. I am happy my friends and cousins are having babies and finding happiness in their relationships.  I am happy that I love my job and get to work with some of the greatest people.  I am happy that I still find joy in simple moments of life.  I am happy that I feel good and that I am able to do the things that a normal 28 year old should. 

Some days I am anxious.  I am anxious that my mom is sick.  I am anxious that I will not find someone that will want to deal with all the "shit" that comes with dating me.  I am anxious that my sister isn't doing so hot. I am anxious that I can't make my friend happier.  I am anxious that I have not found someone that enjoys my company, as much as I enjoy my company. ;) (still have my humor)

Again, I swear I am not looking for pity. I really, really do KNOW that it will all happen. That I will find that person.  My person.  I know that one day everything that has lead me to that point will make sense.  But...I am just having trouble believing it today. 

I want you to know, I am sitting on the couch right now, under a blanket, watching the Steelers, having a pumpkin beer and enjoying every second of it.  I am happy.  I still believe Life is Good.  I still believe it is the small moments in life that mean the most.  I still know what I want and what I deserve.  I still will not settle for anything more than that.  I still enjoy the moments I spend with my mom and my dad and treasure them.  I still enjoy spending time with my friends and laughing hysterically, fighting over who is funniest.  I still love to binge watch TV shows, go to the small airports and watch airplanes, eat chips and pickles, and see giraffes.  

Life is good...it is just hard sometimes. 

Family is Everything

It has been four months almost to the day since I have last blogged.  I know I go in spurts and sometimes in lulls, but with the things that have been going on in life lately, it is hard to sit down and organize my thoughts. 

Life has so many obstacles.  I have written many times about the many obstacles I have faced in my life so far, and less selfishly, the obstacles my family has faced in life so far.  

We have dealt with addiction, cancer, deaths, addiction again, Chiari, addiction again, cancer again, addiction again, cancer still.  Seems odd that Chiari is only in their once, however it, like addiction and cancer, has no cure. 

I still have Chiari.  Yes, my sister and brother both deal with addiction.  Yes, my mom still has cancer.  

How do we keep dealing with these incurable diseases in my family?  How come we are the ones that are given these incurable diseases?  I truthfully try not to ask my self these questions, having faith that it is all part of His plan.  

Helplessly, I do sometimes try to answer these questions.  

I believe my family is built on faith, love, and hope.  We have built a foundation of trust, loyalty and strength between the five of us.  We are not afraid to show our true colors, our true emotions, and our fears and desires.  We all continue to pray to God each day, love each other unconditionally, and hope the best for each of us.  Although the trust has been tested many times, we have rebuilt an understanding for each other.  We have stood up for each other knowing we still wanted what was best, that sometimes looked like tough love. We have pushed each other to our limits, on the brink of losing everything, and yet, here we are today, a stronger family than I could have ever imagined. 

That being said, where we are today is bittersweet.  

My sister and brother are doing well.  They are making good choices, they are being responsible and they are both in healthy relationships.  It is the sweetest I remember our lives being in a very long time.  I want to thank them both.  I want to thank them for fighting their diseases, finding their peace with choices they have made, and for finding ways to be present in my, mom's and dad's life again.  Although I know you will both struggle with temptations for years to come, I want you to know how proud I am of you today.  Feeling like the family of five that I grew up with is something I have longed for for a very, very long time.  We are able to be in a good place again, and for that, I love you guys. 

As for Mama...  Many of you know she was diagnosed with Stage IV metastatic breast cancer.  She has a nasty cough and shortness of breath.  For the most part she feels okay, but is undergoing treatment in the form of a non-chemo pill and hormonal shots.  She will live with the cancer and the treatments forever.  

She started a blog to give people updates on her diagnosis, treatments and her journey, with once again, an incurable disease.  She, like me, enjoys the happy things in life.  She likes to smile, laugh, and be in company of positive people.  

Cancer, it changes things.  It makes people sad.  It makes people scared.  It makes people unsure.  It has made mom sad, scared and unsure.  Dad is sad, scared and unsure.  It has made Maggie and Jackson sad, scared and unsure.  And, selfishly, I think it has made me sadder, more scared and more unsure than I ever remember feeling.  

Mama has told me many, many times in my life that "Life is 10% what happens to you and 90% how you handle it."  When I had my surgery, I was determined to put a positive spin on it.  I was determined to be a success story.  My mom has that same determination.  I got it from her.  So, I know, deep in my heart (human and cow), that she too, despite sadness, fear and the unknown, will have a success story.  Mama, I love you. 

Daddy, you deserve a shout out as well.  How the hell you haven't had a heart attack, anxiety attack, or crawled into par 4 hole and cried is beside me.  You are the definition of strength, hope and love.  I love you for it and hope to some day have a man that is as loving, caring, selfless and giving as you are to our family.  

Now for the boring, less sappy stuff... Chiari... notice it is the last on my list.  It has kind of been on the back burner of obstacles, but honestly, it hurts.  Lately, it hurts a lot. 

Rain.  The monsoon season we had this spring, didn't help.  Despite my normal seasonal depression, any time it rains or storms I have tingly pain in my shoulders, neck and in the bottom right side of my skull.  It makes me want to come home and ice it immediately.  It is very frustrating.   

Windows.  The days that I was able to open windows were the worst.  I was so excited to let the fresh air, I opened the windows confidently.  The lifting of the ones in the kitchen and occasionally the ones in my bedroom, cause a headache.  I know this, and yet it slipped my mind the first few times I did it this spring.  Then, my air conditioner broke, and I had no choice but to open them.  Lifting and heat ... headache.  It is very frustrating.   

Monkey Bars.  Four, five and six year old kids love monkey bars.  I love showing off and thinking I can do them as well.  It is so hard to limit my activity when I want to be able to swing branch to branch, or well, bar to bar with the kids.  Despite my lack of upper body strength and inability to get bar to bar, I hate that I have to stop trying!  It is very frustrating.  

Allergies.  I have them.  This season, worse than most before.  I have a nasty cough (I always wanted to be like my mama) and sneezes.  As they did before my surgery, coughs and sneezes often trigger an instant headache.  It is very frustrating.

Unfortunately, I feel like this one headache has been "lingering" for the last few weeks.  I put lingering in quotes because that varies in meaning day to day.  Sometimes it is a typical headache on the base of my skull, sometimes it hurts over my eyeballs, sometimes my neck is sore, my shoulders hurt, my hands are tingling. Have I mentioned that it is very frustrating?

Anyway, enough complaining.  Lets just say I am very thankful for ice packs, Advil and Advil PM and people that are willing to squeeze my head.  The past few weeks have been a reminder that Chiari is incurable.  I will most likely call my neurologist soon to try to decide what my options are for pain management.  As you can imagine, I am very hesitant seeing my family history with addiction.  However, I don't want to have to start feeling down and not myself because of this dumb "lingering" headache.  

As per usual, this was a rambling blog about my incredible family, stupid diseases, and my want to feel like myself across the board again.  

My mom, dad, sister, brother, and I are lucky to have the support system we do.  We are lucky to have family and friends willing to drop everything to do anything.  When I find myself wondering the answers to those questions of "why us?" I try to remember...we are the lucky ones. 

<3

Honesty ... or Something Like It

*Started this two weeks ago, but finally feeling inspired to finish it!

As I sit here, six o'clock on a Tuesday night, showered, debating dinner choices, and catching up on some of my favorite cop shows, I am also fighting a "slight headache", as I like to call them.  It is basically the in between period where I am unsure what kind of pain I am feeling.  Is this headache over my eyes?  Is this headache sinus-y?  Is this headache due to the rain that is coming tomorrow?  Is this headache Chiari related?  

Truth is, I probably won't know until middle of the night, when either a full force Chiari headache shows up.  Or, I will get up to go to the bathroom and like my magic medicine (Advil) will have worked.  I am hoping for the latter, ladder?  You know, the second option. 

I have been having a great month, almost two without a full-on, debilitating, stay inside, cancel plans headache.  So, I really can not complain. 

But, I am going to for a second.  Mid-week last week (separate than the slight headache mentioned above) I woke up with one of the worst Chiari headaches I had in awhile.  I was tingly, numb and uncomfortable.  I debated leaving work and I haven't done that in over a year.  I brought an ice pack to school, swapped from hot to cold compresses and tried to relax and keep my mind off of the pain.  My eyes hurt, my shoulders hurt and I couldn't do anything but lay down.  I got home from work at 3:45, fell asleep instantly, slept until 7:30.  I woke up to watch Bachelor (priorities were still in check) but sat with an ice pack and head down for majority of it.  I slept well that night with the aid of my drug of choice, Advil PM.  I like the hard stuff, clearly.  I did wake up the next day with a minimal headache but lots of tingles and pain in my neck and shoulders.  All of this, very normal for Chiari.  All symptoms from my past.  

I've said it before, and I will say it every time one of these true Chiari headaches come on, I am thankful I do still get a little bit of the pain.  It is a reminder that I was living with these symptoms, that pain, daily.  That, now, only once every few months do I get a debilitating headache.  How can I continue to complain?  I will stop.  

I went with the honesty title.  I have mentioned before, my favorite quote, "Be Silly. Be Honest. Be Kind."  I am always silly.  I am my own best audience and I find that being silly not only makes me happy but it makes my friends laugh, my family smile, and my students give me extra hugs.  Being kind is natural for me.  I have come from an accepting, friendly and nice family.  I grew up going to church, understanding the benefits of helping those in need, and the importance of spreading happiness and kindness.  Although I am guilty of saying things out of frustration, quick judgement, or momentary lack of emotion, I do believe I am a kind person with a good heart.  

Be honest. With who? When? How? Why?  There are always so many questions to be asked when we say honesty is always the best policy.  I do, however, feel that honest is the best policy.  

Be honest with yourself.  Most important.  In the last few weeks I have seen my brother, my friend, my sister, and even myself go through the process of trying to be honest with ourselves, trying to find what it is we are looking for.  Although we are all searching in different places, we are all looking for peace and happiness in this crazy, beautiful life. 

My brother has been searching for his own inner honesty.  Like many of us, he has spent years ignoring those negative aspects of his life, thinking they would sort themselves out, afraid to face the truths.  But once he looked for and found the support he needed, he was able to get help to bring himself closer to the happiness, the peace that he needs and deserves.  

My friend has been questioning decisions in her job, searching for the confidence to support the work she has done and continues to do.  She, too, has looked for support from her co-workers, her peers, and those she trusts most.  She is looking for the peace and happiness at her job.  

My sister is and always has been struggling with honesty.  Now, under much better circumstances than before.  She is in the middle of a job search and needed advice on how much of her background to be honest with.  Her honesty with herself, is now allowing her to further her honesty with others.  All of this honesty, leading her to peace and happiness. 

And then me.  I take pride in always being honest.  

But am I?  I am THE least confrontational person I know.  I am a pushover in the fact that "I don't care" is a normal sentence of mine and I truthfully mean it.  I don't always just say, "nope, not feeling it" when I don't want to follow through with plans that have been made.  I don't always say, "Hey listen, you are a nice person, but I am just not that into you."  

That being said, I am always honest with myself.  I have made it be known over and over again that being honest is so important to me, in work, in friendships and in relationships.  

At work, I like knowing when I am doing a good job or knowing when I should have done something different.  I also like being honest with myself in the way of reflecting on my work and answering the same questions.  I like being honest with parents, with my coworkers, with my administrators.  I hope that parents, my coworkers, and my administrators will forever be honest with me. 

In friendships, at twenty-eight, it is hard to be honest all the time.  Am I still as close with my friends that I thought I was? The answer is, of course.  I am now in a mature friendship with my friends.  I do not need to talk to them, see them everyday.  I need to know they've got my back, they are there for me, they will be honest with me when I need them to be.  And, even though I am not always a hundred percent honest as to why I don't want to go out on Friday night, I am thankful for those honest friends I have.

In relationships, honesty is so much more than staying loyal.  I can't believe I am pretending to be able to talk about relationships considering I've literally never been in a "real" one.  But, that being said, maybe this is why. I NEED communication.  I NEED honesty.  I NEED clear expectations.  I know what I like, I know what I want and I know I deserve it.  Therefore, the honesty is imperative. 

HAHA! As I am sitting here typing this, a (married with kids) cable guy is fixing my TV.  If you know me at all, the four days with no cable has been a nightmare.  However, as he is sitting here fixing the wires he says to me, "Can I ask you something?  I am sitting in your house, that you bought, right?  You are 28 years old, a teacher, and seemingly a nice person with a great smile.  You have more together than most 28 year old women.  Why the hell are you not married?" 

So many funny things about this.  One, I apparently talk to much to strangers since he knows all of those things from the twenty minutes he has been here.  Two, great question stranger.  As I stared at him, laughing hysterically, I couldn't even come up with an honest answer.  I am picky?  No one is as cool as my dad?  I am content in my life and don't need anyone?  I know what I want and haven't found it?  I went with, "Good question."  I am still cracking up. 

Then, I went to the dermatologist this afternoon.  I waited for an hour until he came in, but was smiley and giggly when he did.  He said, "Oh my goodness are you really always this happy and positive?"  I smiled, said, "Of course!"  He looked at my mom for reassurance, and she said, "Yes, she really is."  He turned to me and said, "Will you marry me?" I laughed and he said, "But really, you aren't married? How!?"  

Thats how it happens, isn't it?  Everyone gangs up on you at once?  Just kidding, I feel so lucky that people get that impression from the first time meeting me or from the quick visits once a year.  As I type that, I am wondering if that it is after the second meeting, after the second date that I become "too much".  Just teasing, again.  Life is great. 

The best part of this doctor visit was when he asked about my Chiari, asked how I was feeling.  I told him I have been great and am so thankful for my surgery, can't believe it has been three years, blah blah blah.  He then said to me, "I truly think Amy, that your positivity, your great outlook on life is the reason you have had such a wonderful recovery.  Not everyone has the same mentality and can live through something so serious, painful and scary."  How many times have I mentioned that THAT is the purpose of this blog.  I want to show that with some positive spins and happy thoughts, going through a crazy obstacle in life can actually lead to one of the greatest periods of time. 

I know this blog was a whole lot of...well nothing Chiari related.  But sometimes when my mind in going crazy, in a thousand directions, a quick vent, or three week vent, is all I need to prevent a headache from occurring.  I hope those of you that know me, know that I had a smile on my face while I wrote this whole thing.  I am not taking life too seriously, that I am just organizing thoughts in my brain.  For those of you that don't know me, just know that we all are a little crazy and we all have our shit.  

Most of all, I hope you all agree, that in all honesty, life is good.