I mean, really, every day I smile. It is one of the best things about me ... if I may say so myself. I am a happy person with a positive outlook on life. I love the simple things in life.
If you have read this before, you know I love my family, my friends, my faith, my job. I love giraffes, airplanes, Pittsburgh sports, warm weather and sunshine. I love pickles, TV shows, Hunter Pence and Rickie Fowler, the beach, the color yellow, country music. I love going to the driving range, having a catch, and dare I say, going for a run?! I love grilled cheese and Daddy Soup. I LOVE surprises, wearing underwear and a T-shirt, flowers or thoughtful gifts that are unexpected. I'm easy to please...
I just saw that ABC News is doing a special on a boy that goes to Saint Joe's and has Chiari. He has had two surgeries, the first not being as successful as mine. He is determined to get himself back on the baseball field. Jamie Apody tells me it is an inspirational story. My favorite kind!
I am literally sitting here, waiting to watch the story, like a kid getting ready to open Christmas presents. I am so excited. A positive twist on Chiari is right up my alley. OH MY GOSH AND GUESS WHAT? The boy that the story is about, just friend requested me on Facebook! Life is so cool.
I am excited that there is awareness being spread in a positive way! I have said it once, twice and will a million more times but my experience was the best it ever could have been. I loved my doctor, I loved the hospital, I loved the cool glass sliding doors to my room, I loved my nurses, I loved the food at the hospital, I loved the hospital visitors I had, I loved the texts, gifts, flowers, balloons, and cool, unique gifts I got! I loved that my doctor did not shave too much of my hair. I loved that he pretended he was going to listen to my "funny story" before the anesthesia kicked in. I loved my baby hairs as they grew back. I loved my ice packs. I loved getting hooked on Sons of Anarchy, Homeland and Shameless. I loved having milkshakes for breakfast and chocolate covered strawberries for lunch. I loved all the cards I got in the mail and I loved the people that reached out, people I never would have expected. Did I mention that I love surprises?!
Last week, I had a HORRIBLE Chiari headache. I woke up feeling it in my neck, but took some Advil and went to work. I had a field trip to go see the Jungle Book at the Arden Theater, noway was I going to miss it. I knew my little friends were going to love it! I did okay, but by the time I took the bus there, accounted for all 24 kiddos fifty times, shh'd my friend that was calling out to all the actors, reassured the whiny, hungry ones they would survive the last half hour, that it was only one episode of their favorite show, got them back on the noisy bus, and home to their parents...I was literally dying. It was the worst pain that I ever remembered. But, then, I did remember. This is what I felt like every day.
I got to my other school around 1:00. I tried to eat, maybe that was what was causing the headache. Chugged two bottles of water, maybe that was what was causing the headache. Nope. I sat in the chair by the computer, my co-worker BFF put a divider up between me and the classroom, and I rested with my eyes shut and an ice pack from the nurse. I was nauseous. I was dizzy. I couldn't keep my eyes open. I drove home, slowly. I walked, well crawled, up my steps, got an ice pack, laid on the couch at 4:15. I woke up at 6:30. I took an Advil PM and a regular Advil. I was asleep by 7:15 and slept until morning.
That is exactly how I was living pre-surgery. I forgot. I forgot how much Chiari really hurts. I forgot how much Chiari impacts daily life. I forgot how Chiari affected which activities and events that I attend. I forgot how much Chiari affected my excitement for things. I forgot how much Chiari pain spread across my body. I really, truly, honestly forgot how much Chiari sucks.
I believe God gives me these headaches to remind me ... Chairi Malformation Brain Decompression Surgery was single-handedly the best decision I have made for myself to date. I have joked before, I wasn't really given the "choice" to have the surgery, but I made the choice to be positive. I made the choice to be hopeful. I made the choice to be faithful. I made the choice to rely on my support systems. I made the choice to make this the best experience it could be. And, it was. Is it wrong of me to say, it was oddly a favorite time of my life?
Everyone has their shit. My go-to motto of life. Other than my Let go, Let God and Life is Good. Everyone. Every single person is dealing with some kind of, well for lack of a better word ... shit. I had brain surgery, my sister is an addict, my mom had breast cancer, my brother has made dumb decisions and getting himself out of trouble, my dad has what he calls "baby cancers" cut out of his skin. All shit.
Some friends have parents that are dying. Some friends have siblings that are questioning their sexuality. Some friends have kids even though they weren't sure they were ready. Some friends are in debt, still not able to move to the next stage of their life because of it. Some friends questioning their relationships with their significant others, others questioning their relationships with God. Some friends got a flat tire on their way to work, some spilled their coffee, and hey, some just have a headache. Again, it is all just shit.
If we are all dealing with something, why can't we all just breath, relax. Deal with it? Continue to do things we love, do things that make us happy. Why do we dwell? Why do we question God and His plan? Why do we always ask the "what ifs"?
What if we all just accept life for what it is? A chance to be the best version of ourselves.
I am trying to practice what I am preaching. About a year ago, when my sister started her recovery once again, and was seemingly taking it very seriously, she told me that she often thought us "normal" people should work the steps. I remember I wrote about my thoughts about it in a previous blog. Now, after having her relapse and enter recovery once again, I thought more about it. She was right. We should all get a chance to face admit we are powerless over many things in life, face our demons whatever they may be, accept the things we can not change, have the courage to change what we can, make amends with those we have hurt, and help others that are going through similar things.
Recently, a friend gave me a book that is used in Families Anonymous. A "Big Book" for us "normal" peeps. Normal? Yeah right! But, really, this book has been a savior the past few days. It has put words to emotions that I have been feeling for months, years! Each passage ends with a "Today I will ..." These have been my favorite. Hence the title, "Today I will Smile". I am so happy to have something to give me strength, hope, and confidence that I will find peace with the things I can not control.
So this blog went from tooting my own horn about how awesome I am and easy to please (...and I don't have a boyfriend why???), to reminiscing about how awesome my surgery and recovery went, to believing that everyone has shit and no one has stinkier shit than the rest, and ended reminding myself that I am in control of my own happiness. Sorry for the rambling mess of words. I have never been organized (you can ask my Mama or coworkers), but I hope my points were made.
If nothing else, the moral of the blog is the same as many others I have written...
Life is SO Good.
Thursday, May 14, 2015
Friday, April 10, 2015
Running in Circles
I wrote that title, and I don't even know why I felt it was appropriate, but I'm sure I will spend the rest of this post justifying it.
Running. I did run the Phillies 5k. Ran. The whole thing. I was on such an adrenalin high afterwards, that in understood why people enjoy it. I have never been a runner. I don't enjoy it, but in that moment, I felt like a runner, who in fact, enjoyed it. Before my surgery I never would have considered running any distance. And by choice? No way in hell. After the race, the girls and I went out and got a drink to celebrate our individual victories. I couldn't have done it without them.
And yet, the next 52 hours, I was in pure pain. I slept for about 24 of them, laid around with ice on my neck and shoulders, and cried a lot. That being said, I refuse to believe it was the run that triggered this headache. I believe that in my excitement and crazy stances I may have lashed my neck forward, I may have strained my neck carrying that heavy medal around it or maybe I even sneezed! I wanted to complain. I really did. But, I couldn't. I was so proud of myself. I took those two and a half days as a reminder of why I had the surgery. It was a reminder that this is how I was living pre-surgery. Feeling disabled like that, was my daily life. Two days, no big deal. Since those 52 hours have been over, I have run equal distance and time with no problems. I can enjoy my runs without fear of a disabling headache. Yay.
So 5k race, check. Hosting a housewarming party, check. 2nd Brainiversary, check. Pens clinch a playoff spot tonight, hopefully check. Phillies started playing again, check. Nice weather should be moving in, check. I work with my best friends, check. Got a cool giraffe shirt in my Easter basket, check. Seemingly, things are going well.
And yet, again, my sister is not doing well. All over the internet today, there are updates and statuses about national sibling day. It makes me sad. I know, I know, made up holiday. But, shouldn't every day be sibling day? Shouldn't you be able to call your sibling to talk about a new song that is out or go out to eat your favorite hot dogs? Shouldn't you be able to open your Easter baskets alongside one another, celebrate birthdays? Shouldn't you be laughing about that time we were driving on the wrong side of the road or when we hit the duck? Shouldn't it be easier for me to think of happy memories to write about? Shouldn't I be excited to show off a picture of us 3? I'm not.
I'm sad. I'm scared. I'm jealous. I'm mad. I'm angry. I'm sad that you chose to leave a safe place. I'm scared for the life you will lead now. I'm jealous you have chosen to love something more than us. I'm mad that you have left us. I'm angry that I'm writing this as if you no longer exist.
Lastly, I'm hopeful. Less so than I used to be, but I continue to have faith. Faith that He will keep you safe. Faith that He has a plan for you. Faith that He will help you find happiness. Faith that He will help us four find forgiveness.
And to my brother, thank you for being there to call when I have a new show to tell you about. Thanks for listening to me yell at you for silly decisions. Thanks for loving chips and dip, the Penguins and the shore as much as I do. Thanks for being funny, confident, and loving. Happy siblings day to you Dewey. I love you.
After spending a family filled, overly lazy, paperwork doing, rainy. crappy eating, Troy Polamalu retiring, non-exercising spring break, I am very ready to get back into my routine. As I mentioned many times in my earlier blogs, anytime that I have a lack of structure (especially combined with dreaded rain) I find myself overanalyzing, lonely and anxious. That's not me. I'm ready to get back to what I love, my job, my best friends/coworkers/therapists :), and of course my kiddos.
So, here I am finishing up and realizing I never came full circle, to my running in circles title. I guess that's how I feel. That I'm constantly moving in a circle, in all obstacles of my life. I have these ups and downs and ups again. I start all my paperwork, finish it, and have to start again. I clean my floors, walk on them, have to clean again. My sister does well, and then we start back at the beginning again. I start to date someone I like, but end up back where I started. The Phillies allow 6 runs, get two, and allow two more. I grocery shop, eat, have to go again. I feel excited, lots to look forward to, hit anxiety, then start over again. I sleep well, have sleepless nights, and catch up again. I know, I know, this is life. Just somedays, I wish I could walk a bit more of a straight line.
Oh well, ending on a positive note, looking forward to warm weather, Phillies winning a game, Penguins clinching, spring clothes and longer days!
Sunday, February 15, 2015
I Feel a Blog Comin' On...
Went to lunch with Mom, Dad and Jackson today and on the way home, Mom asked what my afternoon held. I said, "Eh, I think I might go write a blog." She said, "You feel a blog comin' on!" I laughed. I use that phrase "I feel a blog comin' on" almost every time that I, well, feel a blog coming on.
Its almost like I get to a point that I want to share what has happened, is happening, or might happen. It is like I organize all my thoughts in my brain and decide what is important to write and what can be left out. Okay, if you have read previous posts, you know that the thoughts aren't very "organized", but at least I know what I want to say.
Actually, as I am writing that introduction, I am realizing, I don't even really know why I decided I wanted to write this weekend. Things in my life are pretty constant right now, which is funny because for the first time in probably years I can say that.
As far as Chiari, it has impacted me slightly more than less lately. I have had headaches and some tingles. My ice pack has seen a little more action than it had all summer and I have stayed in once or twice due to the headache. I did also have a 24-hour followed by a horrible head cold for the past two weeks. The head cold itself wouldn't have been so bad, however the minute I got into a coughing fit, a Chiari headache was triggered. It reminded me of pre-surgery, when I would sneeze and be down for the count for the next 48 hours. Luckily, after a good nights sleep, the headache did go away, but it was a rough 12 hours for me.
When I went snowboarding (Yes! I did it!) I successfully got on and off the ski lift every time. The mountain we went to was gorgeous, with unbelievable views and the softest snow I have ever felt. When I fell, it was like I was falling on clouds. After not being on a mountain in three years, and never really being good at the sport, I was very hesitant the first few times down the mountain. Luckily, my cousin and the rest of the people we were with were very patient. I made it down the small mountain two times without falling and with ease. Then we went to the longer trails. These were so fun. Allie spent time with me, helping me gain confidence in using my front edge. By the time I went down for the sixth or seventh time, I was fully confident. Then, I was too confident. I got the speed and started going, hit a small icy patch (leave it to me to find the only one on the mountain), the board went up, and my lower back and butt went down. I laid there. The thoughts going through my head, "Am I okay? Can I move? What hurts? Is Allie yelling my name?" "I'll be okay in a minute," I yelled down to her as I lifted my body to an upright position. I got myself up, but it took a lot of effort and it hurt, bad. I did do two more runs with them, but decided to sit in the lodge during their last two runs. I think it was the right decision. The good news was it never triggered a headache even though I fell hard. The bad news is that I can still feel the pain in my lower back, especially when getting in and out of the car and putting on my socks. Ouch.
Switching back to Chairi for a second, even though I was slightly complaining, I honestly can't believe all I am capable of compared to where I was. Thinking about my days, waking up, getting ready, teaching Kindergarten, running at lunch, teaching Pre-K, going to a meeting, tutoring, having dinner with family or friends, babysitting for a bit, not getting home until 7:30-9:00. Never. I wouldn't have been able to do it. Ever. Now, I really can survive a normal day with no pain. I try to put it in perspective when I have a slight headache, this is how a normal 27 year old lives. It is normal to have the occasional headache, who doesn't? I am normal.
Total side note, one of my aides in my morning class sent me an email last week, that she said made her think of me. It said, "I tried to be normal once. Those were the worst two minutes ever." Cracked me up. I think she meant it as a nice thing. ;)
If you have read my blogs before, you know one of my favorite sayings is "Everyone has their shit". We got talking about this again at lunch today. We, Mom, Dad, Jackson and I, live in a world of addiction. It is not a secret. We, as a family, have never kept it a secret.
My sister is an addict. She struggles daily with making the right choices and with battling this disease. I whole-heartedly believe she wants to do right in the world. She wants to be the caring, passionate, handy, strong, beautiful, and hysterical daughter and sister she once was. She is battling this horrific, appalling, sickening, hellish, selfish, disease.
But, so are we. We didn't smoke the first joint, pop the first pill, or put a needle in our arm. But, we have been in this with her from the beginning. At first enabling her, then practicing tough love, trying to achieve forgiveness, and most recently, accepting.
I am accepting the fact that I can not, nor can Jackson, or my parents, or my grandparents, or cousins, or aunts or uncles, her old friends, or her old boyfriends, change her. We can not make her want to get better. We can not make her want to spend time with us. We can not make her stop washing her hands ten times an hour. We can not stop her from picking at her hands and toes. We can not help with her OCD tendencies. We can not help her budget her money. We can not get her a job. We can not stop her from buying her drug of choice. We can not care more than she does. I have accepted it.
Acceptance doesn't mean I am not angry, mad, furious, hurt and very sad that my sister is a stranger to me. Acceptance doesn't mean that I don't think about it daily and that I don't still cry over it. Acceptance doesn't mean that I don't question God sometimes asking why he has chosen this plan for my family. Acceptance doesn't mean that I don't question my own actions sometimes, still asking what more can I do.
Acceptance means I have learned what I CAN do, what I CAN control. I can pray for her. I can send her a nice message to remind her I love her. I can remind her that rehab is a safe place for her. I can remind her I hope one day she will be in my wedding. I can remind her that I want her to be around to be an aunt to my children some day. I can understand that supporting and enabling has a fine line and I do not want to cross it. I can live my life doing the things I love with those I love. I can spend time with my mom, dad and my brother, knowing that we are all in this together and are there to lean on one another. I can accept that fact that we are all still in this together.
Addiction is a thief. Addiction has stolen the love from my sister and replaced it with obsession. Addiction has stolen reality and clarity from my sister, and has her living in a foggy, falsified world. Addiction has stolen my sister's future and has now placed her in a stand-still world. Addiction has stolen my sweet, silly, smart sister from me and replaced her with an unrecognizable person. Addiction has stolen some of the great, genuine memories of her and replaced them with miserable, messy nightmares. Addiction can only be replaced by recovery, and unfortunately, recovery has to be her choice.
I will always love the addict, but I will forever hate the addiction.
I apologize for turning this what is supposed to be positive, Chiari-based blog into an addiction rant, but this is the truth. This is the "shit" that my family has. We discussed at lunch today the importance of sharing our story. We are not ashamed of our story, we hope it will help others.
As always, I believe life is good. God gives his hardest battles to his strongest soldiers. My family has been fighting quite an ugly war, but only to prove we can handle it. We support each other, we love each other, and we still want only what is best for one another. We have stuck together through breast cancer, brain surgery, and on-going addiction. We will stick together through whatever God chooses to bring on as the next obstacle.
I feel like I mentioned once before, prayers before bed as a little girl. My favorite part being when Mom or Dad would say, "Keep the girls good girls, happy girls and healthy girls, and Jackson a good boy, happy boy, and healthy boy." I continue to say this prayer everyday as I believe in the simplest way, it tells God what my parents want most for us.
I have written many blog posts about hope and how much I believe in it. Today, I hope my sister will enter recovery again. I hope my headaches subside again. I hope my Mom stays in remission. I hope my brother continues to make the right decisions. I hope dad puts sunscreen on when he goes golfing. I hope the groundhog was wrong. I hope Hunter Pence breaks up with his girlfriend. I hope Orange is the New Black comes back sooner than later. I hope I get to go on an airplane soon. I hope I make a change in some of my student's lives. I hope I can spread happiness with just a kind smile. I hope I always believe life is good!
Lastly, BRAINIVERSARY IN JUST TWO SHORT WEEKS!!! YAY!!! :) February 28th will be two years since my surgery. Time flies when you feel good! I think my brainiversary is now my second favorite holiday, behind my birthday. I am having a housewarming party (finally!) on my brainiversary. I decided it was a good way to celebrate all the accomplishments in the last two years! So excited!
As always, thanks to all my peeps!
Its almost like I get to a point that I want to share what has happened, is happening, or might happen. It is like I organize all my thoughts in my brain and decide what is important to write and what can be left out. Okay, if you have read previous posts, you know that the thoughts aren't very "organized", but at least I know what I want to say.
Actually, as I am writing that introduction, I am realizing, I don't even really know why I decided I wanted to write this weekend. Things in my life are pretty constant right now, which is funny because for the first time in probably years I can say that.
As far as Chiari, it has impacted me slightly more than less lately. I have had headaches and some tingles. My ice pack has seen a little more action than it had all summer and I have stayed in once or twice due to the headache. I did also have a 24-hour followed by a horrible head cold for the past two weeks. The head cold itself wouldn't have been so bad, however the minute I got into a coughing fit, a Chiari headache was triggered. It reminded me of pre-surgery, when I would sneeze and be down for the count for the next 48 hours. Luckily, after a good nights sleep, the headache did go away, but it was a rough 12 hours for me.
When I went snowboarding (Yes! I did it!) I successfully got on and off the ski lift every time. The mountain we went to was gorgeous, with unbelievable views and the softest snow I have ever felt. When I fell, it was like I was falling on clouds. After not being on a mountain in three years, and never really being good at the sport, I was very hesitant the first few times down the mountain. Luckily, my cousin and the rest of the people we were with were very patient. I made it down the small mountain two times without falling and with ease. Then we went to the longer trails. These were so fun. Allie spent time with me, helping me gain confidence in using my front edge. By the time I went down for the sixth or seventh time, I was fully confident. Then, I was too confident. I got the speed and started going, hit a small icy patch (leave it to me to find the only one on the mountain), the board went up, and my lower back and butt went down. I laid there. The thoughts going through my head, "Am I okay? Can I move? What hurts? Is Allie yelling my name?" "I'll be okay in a minute," I yelled down to her as I lifted my body to an upright position. I got myself up, but it took a lot of effort and it hurt, bad. I did do two more runs with them, but decided to sit in the lodge during their last two runs. I think it was the right decision. The good news was it never triggered a headache even though I fell hard. The bad news is that I can still feel the pain in my lower back, especially when getting in and out of the car and putting on my socks. Ouch.
Switching back to Chairi for a second, even though I was slightly complaining, I honestly can't believe all I am capable of compared to where I was. Thinking about my days, waking up, getting ready, teaching Kindergarten, running at lunch, teaching Pre-K, going to a meeting, tutoring, having dinner with family or friends, babysitting for a bit, not getting home until 7:30-9:00. Never. I wouldn't have been able to do it. Ever. Now, I really can survive a normal day with no pain. I try to put it in perspective when I have a slight headache, this is how a normal 27 year old lives. It is normal to have the occasional headache, who doesn't? I am normal.
Total side note, one of my aides in my morning class sent me an email last week, that she said made her think of me. It said, "I tried to be normal once. Those were the worst two minutes ever." Cracked me up. I think she meant it as a nice thing. ;)
If you have read my blogs before, you know one of my favorite sayings is "Everyone has their shit". We got talking about this again at lunch today. We, Mom, Dad, Jackson and I, live in a world of addiction. It is not a secret. We, as a family, have never kept it a secret.
My sister is an addict. She struggles daily with making the right choices and with battling this disease. I whole-heartedly believe she wants to do right in the world. She wants to be the caring, passionate, handy, strong, beautiful, and hysterical daughter and sister she once was. She is battling this horrific, appalling, sickening, hellish, selfish, disease.
But, so are we. We didn't smoke the first joint, pop the first pill, or put a needle in our arm. But, we have been in this with her from the beginning. At first enabling her, then practicing tough love, trying to achieve forgiveness, and most recently, accepting.
I am accepting the fact that I can not, nor can Jackson, or my parents, or my grandparents, or cousins, or aunts or uncles, her old friends, or her old boyfriends, change her. We can not make her want to get better. We can not make her want to spend time with us. We can not make her stop washing her hands ten times an hour. We can not stop her from picking at her hands and toes. We can not help with her OCD tendencies. We can not help her budget her money. We can not get her a job. We can not stop her from buying her drug of choice. We can not care more than she does. I have accepted it.
Acceptance doesn't mean I am not angry, mad, furious, hurt and very sad that my sister is a stranger to me. Acceptance doesn't mean that I don't think about it daily and that I don't still cry over it. Acceptance doesn't mean that I don't question God sometimes asking why he has chosen this plan for my family. Acceptance doesn't mean that I don't question my own actions sometimes, still asking what more can I do.
Acceptance means I have learned what I CAN do, what I CAN control. I can pray for her. I can send her a nice message to remind her I love her. I can remind her that rehab is a safe place for her. I can remind her I hope one day she will be in my wedding. I can remind her that I want her to be around to be an aunt to my children some day. I can understand that supporting and enabling has a fine line and I do not want to cross it. I can live my life doing the things I love with those I love. I can spend time with my mom, dad and my brother, knowing that we are all in this together and are there to lean on one another. I can accept that fact that we are all still in this together.
Addiction is a thief. Addiction has stolen the love from my sister and replaced it with obsession. Addiction has stolen reality and clarity from my sister, and has her living in a foggy, falsified world. Addiction has stolen my sister's future and has now placed her in a stand-still world. Addiction has stolen my sweet, silly, smart sister from me and replaced her with an unrecognizable person. Addiction has stolen some of the great, genuine memories of her and replaced them with miserable, messy nightmares. Addiction can only be replaced by recovery, and unfortunately, recovery has to be her choice.
I will always love the addict, but I will forever hate the addiction.
I apologize for turning this what is supposed to be positive, Chiari-based blog into an addiction rant, but this is the truth. This is the "shit" that my family has. We discussed at lunch today the importance of sharing our story. We are not ashamed of our story, we hope it will help others.
As always, I believe life is good. God gives his hardest battles to his strongest soldiers. My family has been fighting quite an ugly war, but only to prove we can handle it. We support each other, we love each other, and we still want only what is best for one another. We have stuck together through breast cancer, brain surgery, and on-going addiction. We will stick together through whatever God chooses to bring on as the next obstacle.
I feel like I mentioned once before, prayers before bed as a little girl. My favorite part being when Mom or Dad would say, "Keep the girls good girls, happy girls and healthy girls, and Jackson a good boy, happy boy, and healthy boy." I continue to say this prayer everyday as I believe in the simplest way, it tells God what my parents want most for us.
I have written many blog posts about hope and how much I believe in it. Today, I hope my sister will enter recovery again. I hope my headaches subside again. I hope my Mom stays in remission. I hope my brother continues to make the right decisions. I hope dad puts sunscreen on when he goes golfing. I hope the groundhog was wrong. I hope Hunter Pence breaks up with his girlfriend. I hope Orange is the New Black comes back sooner than later. I hope I get to go on an airplane soon. I hope I make a change in some of my student's lives. I hope I can spread happiness with just a kind smile. I hope I always believe life is good!
Lastly, BRAINIVERSARY IN JUST TWO SHORT WEEKS!!! YAY!!! :) February 28th will be two years since my surgery. Time flies when you feel good! I think my brainiversary is now my second favorite holiday, behind my birthday. I am having a housewarming party (finally!) on my brainiversary. I decided it was a good way to celebrate all the accomplishments in the last two years! So excited!
As always, thanks to all my peeps!
Wednesday, January 14, 2015
New Year, Facing Fears?
Okay, so...for those of you that follow me on Facebook, you know I had a rough time last weekend with severe Chiari symptoms.
I started Saturday morning with a bit of a headache, took some Advil and continued with my day. Mom and I did some car shopping for her. As we waited for the paperwork to come through, I sat very uncomfortably. I had plans that night, so I decided I would go home and shower. However, the shower did not happen (big shocker, I know). I, instead, laid down and took an hour nap and left myself twenty minutes to get ready, showerless. I did feel okay when I woke up. Cautiously popped some more Advil and went on my way. I did laugh my butt off at a comedy show and really had a lot of fun with college friends. Suck that Chiari.
Sunday morning I woke up and I was really struggling. I did get up, popped an extra Advil, did some house stuff and decided to go to Mom and Dad's for lunch. After lunch, ran an errand with mom, but told her we needed to go home. I was in a lot of pain. It was making me extremely nauseous and uncomfortable in my neck and arms. I went home, rested, and iced my neck the rest of the day. After another good night sleep, I did wake up on Monday feeling much better.
I knew all week I wanted to write a blog. A lot has been going on. I just didn't know how much or how little I wanted to write...and also don't have a computer at my house right now so needed to wait for some convenience.
Here I am...still unsure.
First, I can not believe it is 2015. Second, I can't believe my brainaversiary is in a little over a month. Third, despite this past weekend, I can't believe I have felt as good as I have. Fourth, how is football season almost over? Geesh.
I am thankful it is a new year. The last few months of 2014 were a little bizarre.
My sister no longer lives with my parents and is on her own. She is doing well, but not knowing her almost every move scares us all a bit. I need to give a shout out to my extremely strong, caring, loving, strong, tireless, understanding, patient, and have I mentioned STRONG? parents who have put out every effort and given every opportunity to all three of us. I am so glad we are all at a place now where we are understanding of our situations and although we don't agree with each other's every decision, we have accepted it and moved towards a caring and loving relationship between us all. I am thankful for my family.
Totally switching gears I have not had a roommate since the end of November. Coincidentally, I feel the complete opposite way about not having one as I did about a year ago. I do love having my own space. I like not folding my blanket on the couch each day. I like waiting a week before getting my mail. I like walking to get a glass of water in my underwear or towel. I like binge watching whatever the heck I want as many times as I want. I like watching RedZone all day Sunday and turning on the Pens game. I like going to bed at 8 o'clock with no judgement. But, I also liked that extra money. Luckily for my health, it is not stressing me out as much as it was a year ago. I am just spreading the word that I am looking for someone to live with me...preferably someone that doesn't mind my unfolded blankets, getting belated birthday cards, seeing me in underwear or a towel, binge watching reruns of Friends, watching me cheer for Pittsburgh teams, and respects early bedtimes. Really, I am not asking a lot...right? ;) And as my friend Court says, you will get to live with the most beautiful, funny and sarcastic girl out there. Just a bonus.
This week was weird. I am scared. I didn't even know I was scared.
Since my Chiari surgery, I have sworn off roller coasters as much as I do enjoy them. Noway am I risking that whiplash trigger of a headache!
This week, I was invited to go on a ski trip in a few weeks. I have been back and forth all week on what makes sense. I kept telling my cousin and myself that noway, I don't have a roommate, I can't afford that right now. The more I talked about it with my family and analyzed it, I do have the money. I budgeted for stuff like this.
I am scared out of my mind of going snowboarding. I have always enjoyed the sport. I have been many times -- pre-surgery. This will be my cow-heart's first time on a board, on a mountain, on a ski lift. You would think, "Oh Amy, the atmospheric pressure won't bother you that much". Or, "Just take it easy, do the bunny hills." Unfortunately, neither of those are my biggest fears. Those dang ski lifts.
When I was twelve years old I was hit in the head with a ski lift. As I was getting on, the girl next to me fell over causing me to also. The man working the lift was yelling out, "Watch your head!" I could not hear him, turned around, and BANG! hit me right in the forehead.
That was the start of my headaches. I was diagnosed a few weeks later with what they called cluster headaches. Except now, all these years later, I have come to understand that that was the day my Chiari was triggered. Do I want to go back to that?
Besides those mean moving chairs, I am also scared that I will fall on the mountain and quite possibly trigger a headache. I do know that my cousin will be with me, take care of me, and be understanding if I am feeling down. But, is that fair to her?
I do not like this.
I do not like that I made the excuse of money to mask the fear of going.
I do not like that I almost let the fear keep me from going.
I do not want to be that cow-heart girl!
(as I wrote that part I thought of the quote in The Help that says, "You is kind. You is smart. You is important." --- which I don't really need to repeat to myself, I already know that stuff. Confidence, not a problem of mine ;) )
On a positive note, I do like that my mom and cousin have the patience to talk me through this fear. I do like that I am going to power through and go. I do like that there are shops at the bottom of the mountain, that the hotel is very close, and most of all, the bar and fireplace are just at the bottom. I know I will be okay. I know I will not miss out on an opportunity to spend time with my cousin, meet new people, and do something new. Thanks Mama and Pal for dealing with me.
With no fear, I signed up for my first 5k. The incentives made it worth it. Just kidding, kind of. One of my friends asked me if I would be interested in doing the Phillies 5k. At first I was thinking of a bajillion excuses why I wouldn't, but the more I thought about it, why the heck not. Free tickets to two games, a shirt, and most importantly A GOLD MEDAL!? I will feel like a true winner! Also, two years ago, HECK NO! There is not a chance I would have agreed. This is something I will feel like is an accomplishment. I am not a good runner, I hate to exercise. However, I can...and I will.
AHHHH.
That was a complete ramble post and I apologize.
Before I end it, I do want to say that I love my family. I love my cousins. I love my friends. I love my job. I love that my coworkers are some of my best friends. I love kids. I love that I get to play with them all day. I love my house. I love my bed. I love sports. I love driving. I love country music. I love watching TV. I love a cold beer. I love airplanes. I love the beach. I love pickles and chips. I whole-heartedly, truly, deeply, genuinely LOVE life.
I saw this quote this morning that made me laugh, even though it's not really funny.
"Never apologize for being sensitive or emotional. Let this be a sign that you've got a big heart and aren't afraid to let others see it. Showing your emotions is a sign of strength."
My family, my friends and my coworkers will probably all giggle because they know, and I can say with complete confidence, that I wear my emotions on my sleeves. I believe in honesty and showing my feelings always. If I love something, you know it. If I don't, you know it. If I find something funny, entertaining or sweet you know it. If I am sad, frustrated or mad, you know it. This quote made me realize how okay that is. I do have a big heart. It is ALWAYS full of emotions...usually mixed ones. But, above all else. I am strong. It is because of my support system. I love my life because of all of the people in it and a good part because of my cow heart.
So, in all, after all that rambling, thank you to all of my peeps.
I started Saturday morning with a bit of a headache, took some Advil and continued with my day. Mom and I did some car shopping for her. As we waited for the paperwork to come through, I sat very uncomfortably. I had plans that night, so I decided I would go home and shower. However, the shower did not happen (big shocker, I know). I, instead, laid down and took an hour nap and left myself twenty minutes to get ready, showerless. I did feel okay when I woke up. Cautiously popped some more Advil and went on my way. I did laugh my butt off at a comedy show and really had a lot of fun with college friends. Suck that Chiari.
Sunday morning I woke up and I was really struggling. I did get up, popped an extra Advil, did some house stuff and decided to go to Mom and Dad's for lunch. After lunch, ran an errand with mom, but told her we needed to go home. I was in a lot of pain. It was making me extremely nauseous and uncomfortable in my neck and arms. I went home, rested, and iced my neck the rest of the day. After another good night sleep, I did wake up on Monday feeling much better.
I knew all week I wanted to write a blog. A lot has been going on. I just didn't know how much or how little I wanted to write...and also don't have a computer at my house right now so needed to wait for some convenience.
Here I am...still unsure.
First, I can not believe it is 2015. Second, I can't believe my brainaversiary is in a little over a month. Third, despite this past weekend, I can't believe I have felt as good as I have. Fourth, how is football season almost over? Geesh.
I am thankful it is a new year. The last few months of 2014 were a little bizarre.
My sister no longer lives with my parents and is on her own. She is doing well, but not knowing her almost every move scares us all a bit. I need to give a shout out to my extremely strong, caring, loving, strong, tireless, understanding, patient, and have I mentioned STRONG? parents who have put out every effort and given every opportunity to all three of us. I am so glad we are all at a place now where we are understanding of our situations and although we don't agree with each other's every decision, we have accepted it and moved towards a caring and loving relationship between us all. I am thankful for my family.
Totally switching gears I have not had a roommate since the end of November. Coincidentally, I feel the complete opposite way about not having one as I did about a year ago. I do love having my own space. I like not folding my blanket on the couch each day. I like waiting a week before getting my mail. I like walking to get a glass of water in my underwear or towel. I like binge watching whatever the heck I want as many times as I want. I like watching RedZone all day Sunday and turning on the Pens game. I like going to bed at 8 o'clock with no judgement. But, I also liked that extra money. Luckily for my health, it is not stressing me out as much as it was a year ago. I am just spreading the word that I am looking for someone to live with me...preferably someone that doesn't mind my unfolded blankets, getting belated birthday cards, seeing me in underwear or a towel, binge watching reruns of Friends, watching me cheer for Pittsburgh teams, and respects early bedtimes. Really, I am not asking a lot...right? ;) And as my friend Court says, you will get to live with the most beautiful, funny and sarcastic girl out there. Just a bonus.
This week was weird. I am scared. I didn't even know I was scared.
Since my Chiari surgery, I have sworn off roller coasters as much as I do enjoy them. Noway am I risking that whiplash trigger of a headache!
This week, I was invited to go on a ski trip in a few weeks. I have been back and forth all week on what makes sense. I kept telling my cousin and myself that noway, I don't have a roommate, I can't afford that right now. The more I talked about it with my family and analyzed it, I do have the money. I budgeted for stuff like this.
I am scared out of my mind of going snowboarding. I have always enjoyed the sport. I have been many times -- pre-surgery. This will be my cow-heart's first time on a board, on a mountain, on a ski lift. You would think, "Oh Amy, the atmospheric pressure won't bother you that much". Or, "Just take it easy, do the bunny hills." Unfortunately, neither of those are my biggest fears. Those dang ski lifts.
When I was twelve years old I was hit in the head with a ski lift. As I was getting on, the girl next to me fell over causing me to also. The man working the lift was yelling out, "Watch your head!" I could not hear him, turned around, and BANG! hit me right in the forehead.
That was the start of my headaches. I was diagnosed a few weeks later with what they called cluster headaches. Except now, all these years later, I have come to understand that that was the day my Chiari was triggered. Do I want to go back to that?
Besides those mean moving chairs, I am also scared that I will fall on the mountain and quite possibly trigger a headache. I do know that my cousin will be with me, take care of me, and be understanding if I am feeling down. But, is that fair to her?
I do not like this.
I do not like that I made the excuse of money to mask the fear of going.
I do not like that I almost let the fear keep me from going.
I do not want to be that cow-heart girl!
(as I wrote that part I thought of the quote in The Help that says, "You is kind. You is smart. You is important." --- which I don't really need to repeat to myself, I already know that stuff. Confidence, not a problem of mine ;) )
On a positive note, I do like that my mom and cousin have the patience to talk me through this fear. I do like that I am going to power through and go. I do like that there are shops at the bottom of the mountain, that the hotel is very close, and most of all, the bar and fireplace are just at the bottom. I know I will be okay. I know I will not miss out on an opportunity to spend time with my cousin, meet new people, and do something new. Thanks Mama and Pal for dealing with me.
With no fear, I signed up for my first 5k. The incentives made it worth it. Just kidding, kind of. One of my friends asked me if I would be interested in doing the Phillies 5k. At first I was thinking of a bajillion excuses why I wouldn't, but the more I thought about it, why the heck not. Free tickets to two games, a shirt, and most importantly A GOLD MEDAL!? I will feel like a true winner! Also, two years ago, HECK NO! There is not a chance I would have agreed. This is something I will feel like is an accomplishment. I am not a good runner, I hate to exercise. However, I can...and I will.
AHHHH.
That was a complete ramble post and I apologize.
Before I end it, I do want to say that I love my family. I love my cousins. I love my friends. I love my job. I love that my coworkers are some of my best friends. I love kids. I love that I get to play with them all day. I love my house. I love my bed. I love sports. I love driving. I love country music. I love watching TV. I love a cold beer. I love airplanes. I love the beach. I love pickles and chips. I whole-heartedly, truly, deeply, genuinely LOVE life.
I saw this quote this morning that made me laugh, even though it's not really funny.
"Never apologize for being sensitive or emotional. Let this be a sign that you've got a big heart and aren't afraid to let others see it. Showing your emotions is a sign of strength."
My family, my friends and my coworkers will probably all giggle because they know, and I can say with complete confidence, that I wear my emotions on my sleeves. I believe in honesty and showing my feelings always. If I love something, you know it. If I don't, you know it. If I find something funny, entertaining or sweet you know it. If I am sad, frustrated or mad, you know it. This quote made me realize how okay that is. I do have a big heart. It is ALWAYS full of emotions...usually mixed ones. But, above all else. I am strong. It is because of my support system. I love my life because of all of the people in it and a good part because of my cow heart.
So, in all, after all that rambling, thank you to all of my peeps.
Saturday, September 27, 2014
Bittersweet Answers
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. :)
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. :)
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.
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