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.
