This post is more or less looking through the other side of the lens of my last post which was an introspective look on who and where I am as a result of the life I've been given, pain and all; whereas this post is the other half - who I could have been. As I write this I am faced with the possibility of yet another unexpected surgery. I am once again thrown into the vicious cycle of finally accepting where I am physically and getting into a groove of managing everything, and then another bump in the road that comes that wouldn't even be there if I wasn't sick. If it wasn't for HER. I've just gone through 8 months of being in and out of the hospital and finally things were calming down. We made the big move, started the great new jobs and were getting the fresh start we've been searching for for so long. And now this? ANOTHER surgery?! More daily pain? WHY. And I can't help but think what my life could have been like, who I could have been, if I didn't have pain, if I wasn't sick.
I don't remember what it's like to not be in pain. Even when I was little, I was always slower and more limited than the others. I vividly remember bawling my eyes out in third grade when I was called a crippled for the first time. Granted when I was younger my pain was a fraction of what it is now, but it was still there. I don't remember what it feels like to not be completely exhausted regardless of hours of sleep I get - if there ever was a time when that was reality for me. I've accepted where I am in life physically, I've been to rehab to learn positive coping skills and to get away from a life dependent on pain medication - but that doesn't make it any easier.
I've been in extreme, unrelenting pain every day I can remember. You'd think at some point you would get used to it, but you don't. If anything it gets more exhausting. Harder to get up and fight another day, knowing the next day you have to do it again. Sure, in a way it becomes your "normal" and not every day is the same intense physical battle. But being in this much pain for so long, topped with exhaustion, with absolutely no rest for decades is not only physically wearing but emotionally and mentally devastating. Chronic pain is constantly pushing back on who you are and trying to defeat your will to have a normal life and to continue getting up everyday and being a part of the outside world. You begin to battle anxiety and depression, two things I never truly understood until I experienced them. It changes who you are and how you view the world, whether that be positive or negative. Every single day is a fight to make sure it's positive. Your brain begins to turn a normal activity like someone running down the street from having a positive reaction of "Good for you! Getting out an exercising is an awesome and hard thing, look at you go!" to "UGH. Look at you, rubbing it in my face that I can't do that. How dare you!" Obviously irrational. But neither is unrelenting, never ending pain. It becomes a constant snark-check when someone constantly complains about a small headache, or having the flu for a few days. If you have the flu, you feel like crap for a few days and get better. I, and millions of others like me, feel like the flu on steroids every single day, with no end in sight. It's very easy to lose perspective and snap at those around you just because you're in pain all the time.
When I was younger I had the same big dreams as most kids do - I wanted to be an astronaut or go exploring every country I could name, and for a time wanted to be a killer whale trainer at Seaworld. But as I became sicker, those dreams naturally had to shift. What no one aside from my husband knows (until now) is that in my most ideal dream world in which I am pain free and able bodied, I would like to have been a dancer. I'm obsessed with dancing, whether it be competition shows, movies, youtube videos...I become mesmerized watching their seemingly effortless movements, so flawless and beautiful that anyone in the world can share in the passion. Regardless of color, language, country - the language of dance is universal and can cross any barrier. Not to mention it is a feat of pure athleticism. And the incredible costumes? Come on. However, that is clearly not where my life was meant to end up.
Please don't misunderstand the intent behind these words. I hesitated to even make this post public because I fear I can't adequately express this strange double-edged sword that is chronic illness; but if this is truly to be a chronicle of my life and wading through this life, I have to include the parts that aren't always so pretty. I could not have imagined having the wonderful life I have. I most definitely NEVER thought I'd find someone who wanted to spend the rest of their life with me, I could have never imagined being in the nutrition field and having a job I so love going to every morning, or living this incredible life I have. This is clearly the plan God had for me and it's so much better than I could have dreamed of. However - that doesn't mean there won't always be a part of me who mourns the me that could have been if I had been born healthy. I have the answers to most of the questions I've asked for so long. I know what conditions I have and know that a cure at this point is not feasible. My life is now about managing the random assortment of symptoms that appear whenever they want. I'm not going to be a world renown dancer. But now in the face of adversity and seemingly everything trying to push back at my will to fight, I have a choice. I can still make the most of this life and find new adventures I could have never thought possible. I've accomplished so much already, and still hopefully have many more decades to continue achieving new dreams. I may not have the physical health so many have, but I have more than a lot of other people as well. I have a job I love. I have a roof over my head. I have a loving best friend who I get the honor of being married to. I have the weirdest autistic dog who gives me the love and snuggles I need and who is always excited to see me. I have an incredible support system built of many different people who bring me so much joy and love. This is a great life and I am grateful to experience it. Even if in some alternate universe, an able bodied version of me did become a dancing sensation; that doesn't mean that life would be better than mine. My life may not be perfect, and I may have more physical struggles before I'm 30 than many will have in several lifetimes - but it's beautiful in it's imperfections.
When I wake up every morning I don't know if it's going to be a manageable pain day, or an excruciating pain day. I don't know if I'm going to wake up with an attitude of COME AT ME WORLD, I GOT THIS! or if I will want to just hide away and not be conscious, looking for any way to have a small inkling of relief. But I do know that every morning I will wake up to my best friend, pray to a God who hears me, and has the greatest plan for this version of me.
Wednesday, November 29, 2017
Saturday, November 4, 2017
Fluidity.
I write this from my new (and first) HOME! in Corpus Christi! What an absolute whirlwind the past month has been! I had a phone interview for a job that sounded really cool, and two days later I had an offer!! And like an insane person, I accepted without having been to Corpus Christi probably since I was in middle school. So that weekend we ventured down here to begin our one and only day to find a place to live - which we did!
For the past 2.5 years I've had my first full time career position, and been thrown into way more than I signed up for. I don't regret my time in Marble Falls at all - for one thing, it brought me Jake! And career wise it taught me a lot about my field, about me as a person, and the kind of people I want to surround myself with - and most importantly the kind I don't. I just felt suffocated every.single.day. I was drowning. If I'm honest, and without getting into too much detail in the public world, there were some DARK times. I've never mentally been as low as I was there. I HAD to get out. I had been searching for jobs for months, got a few nibbles, but nothing ever panned out. One opportunity was essentially a sure thing and fell through at the last minute, leaving me devastated. But I suppose God had a better plan for me, and it would seem that plan is in Corpus!
Those who know me know that I do NOT deal with change well. Not just that I dislike it, but it physically/emotionally/mentally screws with my head to deal with change. Call it OCD, call it intense anxiety or whatever label you want to attach to it - it makes life hard because...life is nothing but change. It's so hard to explain because even if the change is 100% positive, I can't immediately get on board. I FINALLY got a ticket out of a toxic environment to a really cool new city. I got a promotion with my career and have my foot in the door to do what I've always been called to do - the NICU!!! BABIES!! In the world of dietetics the NICU is incredibly specialized, very competitive and hard to get into unless you have experience...which you can't get unless you have experience. But here I was given an opportunity to start in a great position and eventually transition to the NICU when their higher designation was approved. And on top of that I get to start this incredible journey with my husband and best friend! And we get to live in this amazing house and be real adults (ha!)! So why can't I just jump right into joyful glee? Couldn't tell you - I've just always needed time.
We hung up the pictures and art this week in the house so it would feel more like home, and yet it made me cry. The pictures aren't where they normally go, we're in a new place and don't know anyone, and I just felt so empty. I have Jake and Brinkley, who bring me immense joy and are my one familiar thing in a land of unknown - but right now it's hard to cling to just that. You know when you have a crappy or long day and you go to the safety and comfort of your home, and everything feels better? That is all I want right now, but right now my house isn't home to me yet. My new job threw me right into the fire and I went from seeing 4-8 patients a day in MF to my first day having 32! Thankfully it's calmed down since then but even still it's physically way more demanding and I had 24 hours from moving in to be at work - absolutely no down time. Needless to say, my body is pretty upset with me right now.
All of this has made my head spin without rest for the past 10 days we've been here, and finally this weekend I have time to sit and breathe. Instead of dealing with these emotions or thoughts I've just been pushing them down and doing what needs to get done. But today, for the first time, I had to excuse myself from a patient's room because I could say absolutely nothing professional or kind. She pushed every button I had and stabbed me right in the pinnacle of my insecurities and anger I didn't fully realize was still so strong in my soul. It was for sure the straw that broke the camel's back. I excused myself and immediately called Jake, crying I was so livid. I have NEVER been that upset about a patient, and my strength and resolve was already so low that I had no tolerance or ability to fight it. All details aside, she has made some very poor health decisions that have already affected her baby. Her baby already has several serious conditions and will now face a life of sickness and pain...as a direct result of her mother. Despite knowing it is due to her lifestyle, she not only doesn't care or have remorse about her actions, but has plans to have another baby after this one.
Many people probably won't understand why this hit me so hard. I've had plenty of difficult patients before. Probably 75% of my patients are noncompliant, and hers was not the most ridiculous diet history I've heard. But she has altered the course of her baby's life because of selfish decisions and could not have cared less. And this hits home SO hard for me because my life has forever been altered because of a birthmom who didn't care enough about herself or me to do what needed to be done. And now this poor, defenseless baby has to fight the same battles. And her mother has absolutely no guilt about the situation or plans to change, but in fact wants another baby and for me to tell her what she's doing is okay. I was shaking with anger - anger that obviously is unresolved. I need to deal with this but honestly, don't know how (Legit taking suggestions or advice on this point). As I transition into the NICU I'm bound to meet more families with stories like this one, stories like mine. But when I think about it, I wouldn't even have a desire or calling for NICU without my situation. I was born already at a massive disadvantage, through no fault of my own - and so are these precious souls. I've been given an opportunity to help get them back on the best track they can be on, and I doubt I'd be on this path without my social history. Does it make it okay? Does it mean I don't still want answers from her or honestly, sometimes to punch her in the face? No, it doesn't. But it does mean that not everything that came from her is negative. For me to even be able to say that is HUGE.
If you've made it this far, I sincerely appreciate it. I don't know how much of this makes sense to anyone else, but I felt the need to get out my thoughts and angst, so I just wrote without editing. This season of my life is most definitely a transition. There is a whole new world of opportunities, memories, and a life to be made here and really I am so excited to discover everything God has for us here, and I know in time it will feel like home. I never really went through the angsty high school "who am I?" phase. In college I definitely found out a lot about who I was, because for the first time you're having to decide what you believe and how you want to live your life without your parents telling you everything. Honestly, I thought I was done with finding out who I was, if that makes sense. But maybe that transition is fluid and ever changing. My life was turned upside down 4 years ago when I found out the truth about my health. I had to redefine who I was and what made me "me". I thought I had dealt with "her" and could go about my life, but obviously that is still "in progress". She made a mistake many years ago, and I've paid for that mistake every day of my life. But it made me who I am. I probably wouldn't be as empathetic as I am, I probably wouldn't have always had a drive to be in the healthcare world, and now more specifically the NICU. I have a kindred spirit with every one of those tiny miracles, and that's because of her. As much as I hate her most of the time (I know it's wrong but hey - working on it), she unintentionally or not made me part of who I am I guess. I want to rise above the anger and negativity I have towards her, and while I am making strides I am not there yet, but one day I will be. But for now? I ride the wave of fluid transition.
For the past 2.5 years I've had my first full time career position, and been thrown into way more than I signed up for. I don't regret my time in Marble Falls at all - for one thing, it brought me Jake! And career wise it taught me a lot about my field, about me as a person, and the kind of people I want to surround myself with - and most importantly the kind I don't. I just felt suffocated every.single.day. I was drowning. If I'm honest, and without getting into too much detail in the public world, there were some DARK times. I've never mentally been as low as I was there. I HAD to get out. I had been searching for jobs for months, got a few nibbles, but nothing ever panned out. One opportunity was essentially a sure thing and fell through at the last minute, leaving me devastated. But I suppose God had a better plan for me, and it would seem that plan is in Corpus!
Those who know me know that I do NOT deal with change well. Not just that I dislike it, but it physically/emotionally/mentally screws with my head to deal with change. Call it OCD, call it intense anxiety or whatever label you want to attach to it - it makes life hard because...life is nothing but change. It's so hard to explain because even if the change is 100% positive, I can't immediately get on board. I FINALLY got a ticket out of a toxic environment to a really cool new city. I got a promotion with my career and have my foot in the door to do what I've always been called to do - the NICU!!! BABIES!! In the world of dietetics the NICU is incredibly specialized, very competitive and hard to get into unless you have experience...which you can't get unless you have experience. But here I was given an opportunity to start in a great position and eventually transition to the NICU when their higher designation was approved. And on top of that I get to start this incredible journey with my husband and best friend! And we get to live in this amazing house and be real adults (ha!)! So why can't I just jump right into joyful glee? Couldn't tell you - I've just always needed time.
We hung up the pictures and art this week in the house so it would feel more like home, and yet it made me cry. The pictures aren't where they normally go, we're in a new place and don't know anyone, and I just felt so empty. I have Jake and Brinkley, who bring me immense joy and are my one familiar thing in a land of unknown - but right now it's hard to cling to just that. You know when you have a crappy or long day and you go to the safety and comfort of your home, and everything feels better? That is all I want right now, but right now my house isn't home to me yet. My new job threw me right into the fire and I went from seeing 4-8 patients a day in MF to my first day having 32! Thankfully it's calmed down since then but even still it's physically way more demanding and I had 24 hours from moving in to be at work - absolutely no down time. Needless to say, my body is pretty upset with me right now.
All of this has made my head spin without rest for the past 10 days we've been here, and finally this weekend I have time to sit and breathe. Instead of dealing with these emotions or thoughts I've just been pushing them down and doing what needs to get done. But today, for the first time, I had to excuse myself from a patient's room because I could say absolutely nothing professional or kind. She pushed every button I had and stabbed me right in the pinnacle of my insecurities and anger I didn't fully realize was still so strong in my soul. It was for sure the straw that broke the camel's back. I excused myself and immediately called Jake, crying I was so livid. I have NEVER been that upset about a patient, and my strength and resolve was already so low that I had no tolerance or ability to fight it. All details aside, she has made some very poor health decisions that have already affected her baby. Her baby already has several serious conditions and will now face a life of sickness and pain...as a direct result of her mother. Despite knowing it is due to her lifestyle, she not only doesn't care or have remorse about her actions, but has plans to have another baby after this one.
Many people probably won't understand why this hit me so hard. I've had plenty of difficult patients before. Probably 75% of my patients are noncompliant, and hers was not the most ridiculous diet history I've heard. But she has altered the course of her baby's life because of selfish decisions and could not have cared less. And this hits home SO hard for me because my life has forever been altered because of a birthmom who didn't care enough about herself or me to do what needed to be done. And now this poor, defenseless baby has to fight the same battles. And her mother has absolutely no guilt about the situation or plans to change, but in fact wants another baby and for me to tell her what she's doing is okay. I was shaking with anger - anger that obviously is unresolved. I need to deal with this but honestly, don't know how (Legit taking suggestions or advice on this point). As I transition into the NICU I'm bound to meet more families with stories like this one, stories like mine. But when I think about it, I wouldn't even have a desire or calling for NICU without my situation. I was born already at a massive disadvantage, through no fault of my own - and so are these precious souls. I've been given an opportunity to help get them back on the best track they can be on, and I doubt I'd be on this path without my social history. Does it make it okay? Does it mean I don't still want answers from her or honestly, sometimes to punch her in the face? No, it doesn't. But it does mean that not everything that came from her is negative. For me to even be able to say that is HUGE.
If you've made it this far, I sincerely appreciate it. I don't know how much of this makes sense to anyone else, but I felt the need to get out my thoughts and angst, so I just wrote without editing. This season of my life is most definitely a transition. There is a whole new world of opportunities, memories, and a life to be made here and really I am so excited to discover everything God has for us here, and I know in time it will feel like home. I never really went through the angsty high school "who am I?" phase. In college I definitely found out a lot about who I was, because for the first time you're having to decide what you believe and how you want to live your life without your parents telling you everything. Honestly, I thought I was done with finding out who I was, if that makes sense. But maybe that transition is fluid and ever changing. My life was turned upside down 4 years ago when I found out the truth about my health. I had to redefine who I was and what made me "me". I thought I had dealt with "her" and could go about my life, but obviously that is still "in progress". She made a mistake many years ago, and I've paid for that mistake every day of my life. But it made me who I am. I probably wouldn't be as empathetic as I am, I probably wouldn't have always had a drive to be in the healthcare world, and now more specifically the NICU. I have a kindred spirit with every one of those tiny miracles, and that's because of her. As much as I hate her most of the time (I know it's wrong but hey - working on it), she unintentionally or not made me part of who I am I guess. I want to rise above the anger and negativity I have towards her, and while I am making strides I am not there yet, but one day I will be. But for now? I ride the wave of fluid transition.
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