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.
Sunday, August 20, 2017
Lemons.
I've been pretty AWOL from my blog for the past 6 months, because it has been a really tough ride. And just when I thought it couldn't get any harder, it did.
Thursday started out just like a normal day. I went to work feeling strangely peppy with a lot of energy. I went to my daily meeting and as the meeting went on, I began to feel weirder and weirder. As part of dysautonomia I have what I call bad nerve days. There's really no way to describe it other than my nerves just feel weird. I feel really jumpy and on edge, usually have a pretty significant hand tremor and often feel light headed. These symptoms began to increase during the meeting, but much faster than normal and I just felt like something was really wrong. I called my husband at work and asked him to come get me, fighting to keep a clear head and not let my anxiety make this situation worse. By the time I made it back to my office it was clear this was not going away. The dizziness and vertigo were getting worse so I went to the bathroom to have a space to be alone in, and passed out. I think I was only out for a few seconds, but when I came to, I could no longer walk. We immediately went to the ER, and by this time my whole body was shaking with tremors, my pulse was around 170 and I was in full freak out mode. It was so urgent that they didn't even let my husband in for a while until I was stable - which made the situation that much more terrifying for both of us.
I was transferred via ambulance to a sister hospital that was higher level of care, and have been admitted for the past 3 days.
You know with any medication there are seemingly a hundred different side effects, that all sound pretty terrible. And then there's the really severe consequences down at the bottom that are so rare most people don't even know they're there. You know who somehow seems to always be plagued with the rare, no one will ever get that side effect? That's right - yours truly. In 2006 I was taking a nerve medication and one of the rare side effects was inability to walk. So after a 3 week hospital stay with every test under the sun run, it was determined to be a side effect of the medication, and the next 6 weeks involved me learning to walk again. Well, wouldn't you know it, about a month ago I started taking a different nerve medication in the same family and it's happened again. When I started the medication I warned my doctor of my concern, and she was confident that it wouldn't happen again...but she didn't know my luck with side effects.
So it's been determined that my inability to walk was a symptom of the medicine, but still don't really have a clear indication of what happened when I passed out. Our best guess is it was just an insanely bad nerve day, and I think part of it was at this time the medication had just gone rogue and was disturbing every part of me, and my body had had enough and just went haywire.
I got discharged yesterday after being able to at least stand for a few seconds. I had been there for 3 days and had my pain managed, and with fluid resuscitation believed I had at least gotten over the initial hump and could recover at home and begin learning to walk again much quicker than the last time. But once I got home, without pain management, I began to panic. Why did I leave? It was such a mistake! Here I was exactly where I was 3 days ago, in excruciating pain and no longer able to stand again. It was recommended to me in the hospital to go to inpatient rehab, but I'm stubborn and blew it off, thinking I can handle this myself at home. But now I sit here, wondering if I made the right decision. Still deciding if I want to go or not - but for now I am at home.
I've been sick for a long time, and had to go through some really tough times, but the hardest part for me is when things like this happen because I have no other choice but to be completely dependent on others. Do you know how humiliating it is to have to be carried to the bathroom? To have to ask someone to do absolutely everything for you if it's not within reach of where you are?
This is however the first time I've gone through this experience with my husband. And let me tell you my friends, if there was ever any doubt he was sent for me (which there wasn't), there is absolutely none now. He has been such a saint through this whole thing and has truly been my rock. He has helped carry me to the bathroom, stayed with me on a super uncomfortable hospital couch and been at my beck and call through this whole thing, all the while encouraging me and constantly pushing back against my thoughts of being worthless or an invalid. He is helping me make the best of this situation. And today, that means getting to decorate my wheelchair and new walker, so it's a little less humiliating and adds a little fun and spark to this sucky situation.
I'm down, y'all. I feel defeated and am so devastated to be back in this place of my legs literally crumbling under me if I try to stand. Last time this happened it took me weeks and weeks to be able to function normally again, and right now all I see if a huge mountain in front of me that I don't know if I have the strength to climb. Thankfully I still have most of this coming week off from work, and can still make the decision to stay home with outpatient PT and do it myself, or go to inpatient rehab and go about it that way. But whatever my decision, as humiliating as this is, I'm asking for your help. I need encouragement, support, and need to know that I have my friends around me right now. I don't know specifically what that means, or what tangible/intangible things I really need - I just don't want to be alone in this.
I know things will get better. They did last time, and they will this time. I know this is temporary and I'm trying so hard to not get in the headspace that this is permanent and how my life will be. But I've got to be honest, I feel like I could feed the world with all the lemons life is giving me right now.
Thursday started out just like a normal day. I went to work feeling strangely peppy with a lot of energy. I went to my daily meeting and as the meeting went on, I began to feel weirder and weirder. As part of dysautonomia I have what I call bad nerve days. There's really no way to describe it other than my nerves just feel weird. I feel really jumpy and on edge, usually have a pretty significant hand tremor and often feel light headed. These symptoms began to increase during the meeting, but much faster than normal and I just felt like something was really wrong. I called my husband at work and asked him to come get me, fighting to keep a clear head and not let my anxiety make this situation worse. By the time I made it back to my office it was clear this was not going away. The dizziness and vertigo were getting worse so I went to the bathroom to have a space to be alone in, and passed out. I think I was only out for a few seconds, but when I came to, I could no longer walk. We immediately went to the ER, and by this time my whole body was shaking with tremors, my pulse was around 170 and I was in full freak out mode. It was so urgent that they didn't even let my husband in for a while until I was stable - which made the situation that much more terrifying for both of us.
I was transferred via ambulance to a sister hospital that was higher level of care, and have been admitted for the past 3 days.
You know with any medication there are seemingly a hundred different side effects, that all sound pretty terrible. And then there's the really severe consequences down at the bottom that are so rare most people don't even know they're there. You know who somehow seems to always be plagued with the rare, no one will ever get that side effect? That's right - yours truly. In 2006 I was taking a nerve medication and one of the rare side effects was inability to walk. So after a 3 week hospital stay with every test under the sun run, it was determined to be a side effect of the medication, and the next 6 weeks involved me learning to walk again. Well, wouldn't you know it, about a month ago I started taking a different nerve medication in the same family and it's happened again. When I started the medication I warned my doctor of my concern, and she was confident that it wouldn't happen again...but she didn't know my luck with side effects.
So it's been determined that my inability to walk was a symptom of the medicine, but still don't really have a clear indication of what happened when I passed out. Our best guess is it was just an insanely bad nerve day, and I think part of it was at this time the medication had just gone rogue and was disturbing every part of me, and my body had had enough and just went haywire.
I got discharged yesterday after being able to at least stand for a few seconds. I had been there for 3 days and had my pain managed, and with fluid resuscitation believed I had at least gotten over the initial hump and could recover at home and begin learning to walk again much quicker than the last time. But once I got home, without pain management, I began to panic. Why did I leave? It was such a mistake! Here I was exactly where I was 3 days ago, in excruciating pain and no longer able to stand again. It was recommended to me in the hospital to go to inpatient rehab, but I'm stubborn and blew it off, thinking I can handle this myself at home. But now I sit here, wondering if I made the right decision. Still deciding if I want to go or not - but for now I am at home.
I've been sick for a long time, and had to go through some really tough times, but the hardest part for me is when things like this happen because I have no other choice but to be completely dependent on others. Do you know how humiliating it is to have to be carried to the bathroom? To have to ask someone to do absolutely everything for you if it's not within reach of where you are?
This is however the first time I've gone through this experience with my husband. And let me tell you my friends, if there was ever any doubt he was sent for me (which there wasn't), there is absolutely none now. He has been such a saint through this whole thing and has truly been my rock. He has helped carry me to the bathroom, stayed with me on a super uncomfortable hospital couch and been at my beck and call through this whole thing, all the while encouraging me and constantly pushing back against my thoughts of being worthless or an invalid. He is helping me make the best of this situation. And today, that means getting to decorate my wheelchair and new walker, so it's a little less humiliating and adds a little fun and spark to this sucky situation.
I'm down, y'all. I feel defeated and am so devastated to be back in this place of my legs literally crumbling under me if I try to stand. Last time this happened it took me weeks and weeks to be able to function normally again, and right now all I see if a huge mountain in front of me that I don't know if I have the strength to climb. Thankfully I still have most of this coming week off from work, and can still make the decision to stay home with outpatient PT and do it myself, or go to inpatient rehab and go about it that way. But whatever my decision, as humiliating as this is, I'm asking for your help. I need encouragement, support, and need to know that I have my friends around me right now. I don't know specifically what that means, or what tangible/intangible things I really need - I just don't want to be alone in this.
I know things will get better. They did last time, and they will this time. I know this is temporary and I'm trying so hard to not get in the headspace that this is permanent and how my life will be. But I've got to be honest, I feel like I could feed the world with all the lemons life is giving me right now.
Sunday, June 25, 2017
Pieces.
If you asked me to describe my life right now, I would say it's in pieces. Not necessarily a negative thing, just that there are so many different pieces spread out in front of me, so much unknown - and I can't finish it without getting some pieces put in the right place first. The problem? I'm not in charge of putting the pieces together!
Those close to me know that I am a HUGE fan of puzzles. I love the mental challenge of figuring out how to put tiny parts together to create a bigger picture. Have you ever noticed if you just look at a piece by itself, or even a couple, you have no idea what the bigger picture is? It doesn't make sense to just look at part of it. So why is it so hard to not do that in life? We get so bogged down by the current circumstance and most of the time it doesn't make sense, but we don't have access to the big picture yet. My current conquest is a 1500 piece collage of Van Gogh's most famous works, and it's satisfyingly difficult! But think about it, you've toiled for hours over this puzzle, possibly even days - and then finally...eventually....it's finished. Complete. It may be weird, but when I'm finished with a puzzle I find myself running my hand along the entirety of it, enjoying the feel of a complete puzzle, no missing pieces (most of the time). It's perfect. The benefit of actual puzzles if you get a picture of the completed image to go off of and to guide you through the process, though in life sometimes we are not so lucky.
There are a lot of unknowns in my life right now, and a lot of missing pieces. Over the next couple days so much of my life could change, and I have been stuck in an agonizing hole of waiting. I struggle a lot with anxiety, and with my dysautonomia when I get in these stressful situations (even if it's positive stress) I get stuck in the "fight or flight" mode for hours, or lately, days - which is beyond words exhausting. Your body isn't meant to be in that state for more than a few minutes, and after the stressor is gone your body resets itself. Mine however, seems to have lost it's reset button, which has made me pretty sick and run down the past couple weeks. Hopefully all my efforts will have paid off, and hopefully there will be a happy end with the final puzzle piece soon.
Not only with my (I'm sure frustratingly) vague situation, but with my health too there are always going to be missing pieces. I suffer from autoimmune diseases that I usually have to educate my own heathcare providers about. And apparently now my migraines are going to be daily for the time being. I used to have migraines maybe 3-4 times per year, and they were managed with medication and in the grand scheme of my health, were not a big deal. But after the cruise I developed Mal De Dembarkment Syndrome (MDDS), which apparently triggered my migraines to become daily. And there's a possibility of fibromyalgia?? Still unsure of that one. Needless to say, as if my life weren't complicated enough by chronic pain and autoimmune issues, I get to add another piece to it. Right now I'm not controlled by medication and am going through the agonizing trial and error process of different ones - the current has an 8 week titration schedule to even get to the lowest dose. Great.
And marriage! That is like adding a whole other puzzle to the mix! Jake and I have been through the ringer in our 4 short months of marriage, but it has made us all the more strong as a team. I don't have some prolific message to end this with, it's moreso just word vomit and trying to figure out some sort of pattern to the various pieces of my life right now that just don't seem to fit no matter how hard I try. But I try to focus on that accomplished feeling I have at the end - knowing my hard work and struggle has paid off. Hopefully soon I will be granted a few final pieces that will put together this part in my life, and I will get the satisfaction of a job well done. But for now? I wait.
Those close to me know that I am a HUGE fan of puzzles. I love the mental challenge of figuring out how to put tiny parts together to create a bigger picture. Have you ever noticed if you just look at a piece by itself, or even a couple, you have no idea what the bigger picture is? It doesn't make sense to just look at part of it. So why is it so hard to not do that in life? We get so bogged down by the current circumstance and most of the time it doesn't make sense, but we don't have access to the big picture yet. My current conquest is a 1500 piece collage of Van Gogh's most famous works, and it's satisfyingly difficult! But think about it, you've toiled for hours over this puzzle, possibly even days - and then finally...eventually....it's finished. Complete. It may be weird, but when I'm finished with a puzzle I find myself running my hand along the entirety of it, enjoying the feel of a complete puzzle, no missing pieces (most of the time). It's perfect. The benefit of actual puzzles if you get a picture of the completed image to go off of and to guide you through the process, though in life sometimes we are not so lucky.
There are a lot of unknowns in my life right now, and a lot of missing pieces. Over the next couple days so much of my life could change, and I have been stuck in an agonizing hole of waiting. I struggle a lot with anxiety, and with my dysautonomia when I get in these stressful situations (even if it's positive stress) I get stuck in the "fight or flight" mode for hours, or lately, days - which is beyond words exhausting. Your body isn't meant to be in that state for more than a few minutes, and after the stressor is gone your body resets itself. Mine however, seems to have lost it's reset button, which has made me pretty sick and run down the past couple weeks. Hopefully all my efforts will have paid off, and hopefully there will be a happy end with the final puzzle piece soon.
Not only with my (I'm sure frustratingly) vague situation, but with my health too there are always going to be missing pieces. I suffer from autoimmune diseases that I usually have to educate my own heathcare providers about. And apparently now my migraines are going to be daily for the time being. I used to have migraines maybe 3-4 times per year, and they were managed with medication and in the grand scheme of my health, were not a big deal. But after the cruise I developed Mal De Dembarkment Syndrome (MDDS), which apparently triggered my migraines to become daily. And there's a possibility of fibromyalgia?? Still unsure of that one. Needless to say, as if my life weren't complicated enough by chronic pain and autoimmune issues, I get to add another piece to it. Right now I'm not controlled by medication and am going through the agonizing trial and error process of different ones - the current has an 8 week titration schedule to even get to the lowest dose. Great.
And marriage! That is like adding a whole other puzzle to the mix! Jake and I have been through the ringer in our 4 short months of marriage, but it has made us all the more strong as a team. I don't have some prolific message to end this with, it's moreso just word vomit and trying to figure out some sort of pattern to the various pieces of my life right now that just don't seem to fit no matter how hard I try. But I try to focus on that accomplished feeling I have at the end - knowing my hard work and struggle has paid off. Hopefully soon I will be granted a few final pieces that will put together this part in my life, and I will get the satisfaction of a job well done. But for now? I wait.
Thursday, April 6, 2017
Update!
I have an update – and a diagnosis! Turns out all of this is
transpiring as a result of vestibular migraines. I’ve struggled with “normal”
migraines since high school, and have obvious vestibular issues as a result of
my dysautonomia, and I guess after 27 years they’ve decided to get together and
have a party. Also turns out that the ENT I saw a month and a half ago
diagnosed this problem when I saw him, but neglected to tell me or explain that
he doesn’t treat migraines and that I would need to go see a neurologist. And
the neurologist, who has been in cahoots with said ENT, never told me that
diagnosis either or offered a treatment plan. Needless to say this ENT is out
of my doctor arsenal. The only reason I even found this out (after countless
calls and messages to both physicians) was when I messaged him after my saint
of a sister found vestibular migraines online, and his nurse called me back
confused why I was so excited about finding out my diagnosis that had already
been made.
So – there is at least a light at the end of the tunnel now.
I’ve been started on a daily preventative medicine, which of course will take
about a month to fully get in my system, and I’m working on getting an as
needed med to get me through until then. Short and sweet update. I’m still
feeling pretty awful 75% of the time but at least I know the cause, and there
is a treatment! Something I’ve not always had the fortune of having. And now we
wait…
Friday, March 31, 2017
Reaching the Limit.
Where to start? I feel like these days I don't know which end is up, lately all too literally. Everything in the last 2 months has been such a whirlwind, simultaneously feeling like it went by at 2 and 120 mph. The biggest and most exciting thing is that this is my first post as a married lady!! The wedding was everything I dreamed of and more. Married life is incredible! It's like a slumber party with your best friend, but every night! It's such a comfort to have him around all the time and getting to start this new chapter together.
Unfortunately, it hasn't all been sunshine and roses. Literally the second we docked back in Galveston I started feeling...off. You know in Inception when Ariadne is learning how to manipulate structures in dreams? That's literally what my vision looked like. This happened on and off for the next couple days. I've had bouts with vertigo (presumably another lovely addition to my dysautonomia symptom symposium), but never like this. I went back to work for one day, and the next day I couldn't even sit up. Everything was spinning all the time, and I felt like my entire world was tilting to one side. I literally would tilt sitting up because that made me feel like I was sitting straight up. One ER visit later they said it's likely just super intense post-cruise vertigo and it would pass. But a few days later I was completely useless. I couldn't work, and was now experiencing massive changes in my hearing. I was hospitalized and had an MRI to rule out the scary stuff - like cancer or some sort of weird mass pressing on my cranial nerves. And while the negative MRI is amazing news and was a huge relief to hear, it still meant being back exactly where I've been for 95% of my life...miserable and without answers. Hearing tests revealed something wrong with the cranial nerve that affects balance and hearing, but no answers as to why. Vestibular testing is next on the agenda, but it's been 3 weeks now and still no date set. Despite numerous frantic calls to my doctors and their nurses, no one really seems to be taking this seriously or realizing what an effect it's having on my daily life.
The vertigo, thankfully, has mostly subsided and just comes periodically now. Though when it hits I can't even stand up for fear of falling. But now the biggest issue is my hearing. I go through periods of extreme hypersensitivity and tinnitus (ringing in the ears) that is so loud I can't hear anything else, which is a new and overwhelming experience. To put it in perspective a little, a car engine sounds like an airplane. The rustling of bed sheets sounds like 10,000 plastic bags being crinkled at once. People speaking in a normal voice sounds like they are screaming directly into my ear. And don't even get me started on Brinkley barking. And most of the time during these "episodes" or whatever lovely name they can be called, I get disoriented. I feel disconnected from my body, like there's a big gap between my brain and the rest of me. At it's worst I haven't been able to speak or understand people speaking to me, at best it's like one of my bad aphasia days where I forget normal words and feel REALLY stupid, all the time. Especially having a clinical job where sometimes literally patient lives are in my hands, it doesn't help when you're not at full mental capacity. And it's quite humbling, and humiliating, to have to call to another hospital and ask another dietitian to read your note to see if A) it makes sense because words are hard to put together and B) that you've done the math right to properly feed this patient. My entire life my mental status was the only thing that's always been fine, and now suddenly that's compromised. As far as the hearing goes, I've been wearing ear plugs for most of the time just to make things seem normal, but apparently that's not good and makes the sensitivity even worse. But there are some days like yesterday that I just HAVE to get as much silence as I can muster, so I'm taking one for the long run team by using them. It's almost like I have to make myself completely deaf, shutting out the world, just to keep my sanity. Watching tv has become silent movies with subtitles, and my darling, sweet husband is doing everything he can to keep things quiet around the house and putting up with having to read while watching TV. Last night he signed in ASL to me that I was beautiful, and I started to cry (though I don't think he knew why). I began to think "Is this my life now? Never being able to hear the soothing, melodic tone of my husband's voice? Never getting to talk to my family on the phone without video? Having to communicate solely through sign language?" And while I know that realistically that isn't likely to happen, the temporariness of it last night felt all too permanent. Thankfully at this point I'm getting some periods of solace, though they seem to come and go all too quickly.
I wish I could be writing this saying that I've had the next round of tests, they've found a diagnosis and there's a super easy cure. As hard as it's been physically to be dealing with this, the hardest part has by far been the mental battle. No one can truly understand the devastation of being the cycle anew unless you've had the unfortunate lot in life to experience it firsthand. For 24 years I lived without answers. Going day by day with a miserable list of symptoms no one could explain, but just had educated guesses on. And then it happened! The day I remember still so vividly to this day - the day I FINALLY was given answers. A reason WHY all the random things were happening and finally all the pieces of the puzzle were being put together. I got to meet an incredible group of people who really understood the walk I had been walking. I NEVER thought in my life I'd meet someone who truly and completely understood what it was like, and suddenly for a month I was surrounded and encouraged by them and together we learned how to take back power over our various illnesses. And honestly? I thought I was done. Done having mysterious symptoms without any conceivable cause, done going to specialist after specialist trying to find someone who would take my illness seriously. I had FINALLY gotten a routine down and made peace with where I was physically, mentally, and emotionally. I have a great job that is going to get me started down a path to my dream job, I'm completely living on my own and supporting myself, which is something that growing up was never going to be an option for me. For heaven's sakes I just got MARRIED! Another thing I had honestly given up on. We had just gone to visit 3 different countries in the span of a week and both had gone on a cruise for the first time and had the greatest honeymoon of all time. If anything this was my time. My time to just be irrevocably and completely happy. But now I'm back to the most dark part of my life? Back in the driver's seat with no steering wheel or GPS, and no police around to help guide me to safety. No one even on the road in sight, noticing I'm about to crash and burn (or at least feeling like I will). It is one of the MOST frustrating things in life to have something wrong with you physically and when you go to a doctor, or several doctors, and they don't seem to take it seriously or think you're just being an overdramatic woman, or worse - a pill seeker. Or they decide on a plan of care, some testing that will hopefully shed some light on what is rocking your world, but don't seem to have any conviction about getting it scheduled.
If you're still with me - congrats. I wish I could end this post with some spiritually convicting question or some wisdom that makes you feel all warm and fuzzy inside like some of my posts do, but this one is not one of those. This is completely an "I'm at the end of my rope with chronic illness and don't know what else to do but rant and yell at my computer screen to get a minuscule amount of emotional catharsis" post, which to be honest is the type of post I started this blog for. I'll admit this weekend in particular, I was in a DARK emotional/mental place. As I write this I am thankfully at least in a better mental place than I was, though it's still not the bubbly, happy person that I aim to be. I'm stuck in a pit of miserable waiting for these tests that may not even have answers for what's going on. I just got married a month ago. This should be the happiest time in my life, and I'm back in the worst cycle there is. Not to say that there aren't happy times still being had. I mean, I just got married!! Married life, as I mentioned, is the greatest thing in the world. And there's no way I could be as positive as I am without my loving husband encouraging me and being my rock right now. It's such an example of God's love for us to be living out marriage on a daily basis. There's NOTHING like that love. You can't describe it, and you don't know it until you feel it for the first time. And it just makes you think "if I can love my spouse THIS much, and experience this kind of love on Earth, how can anyone truly explain or understand the breadth God's love for us"? So there it is. The bright spot in the darkness (a not so subtle plug to my last post). If you're still reading - I'd covet your prayers. It's really scary being in a place with no answers, and no obvious signs of a hard road ending, and I'm tired. Not even tired - I am fatigued. Exhausted. Worn down. Burned out. I don't have much fight left, and I consider myself a relentless fighter. I need answers, and I need them soon. So please be in prayer that the testing comes through - and quickly. And that I can hold on to God's strength and use His power to get me through, because I don't have anything left.
Unfortunately, it hasn't all been sunshine and roses. Literally the second we docked back in Galveston I started feeling...off. You know in Inception when Ariadne is learning how to manipulate structures in dreams? That's literally what my vision looked like. This happened on and off for the next couple days. I've had bouts with vertigo (presumably another lovely addition to my dysautonomia symptom symposium), but never like this. I went back to work for one day, and the next day I couldn't even sit up. Everything was spinning all the time, and I felt like my entire world was tilting to one side. I literally would tilt sitting up because that made me feel like I was sitting straight up. One ER visit later they said it's likely just super intense post-cruise vertigo and it would pass. But a few days later I was completely useless. I couldn't work, and was now experiencing massive changes in my hearing. I was hospitalized and had an MRI to rule out the scary stuff - like cancer or some sort of weird mass pressing on my cranial nerves. And while the negative MRI is amazing news and was a huge relief to hear, it still meant being back exactly where I've been for 95% of my life...miserable and without answers. Hearing tests revealed something wrong with the cranial nerve that affects balance and hearing, but no answers as to why. Vestibular testing is next on the agenda, but it's been 3 weeks now and still no date set. Despite numerous frantic calls to my doctors and their nurses, no one really seems to be taking this seriously or realizing what an effect it's having on my daily life.
The vertigo, thankfully, has mostly subsided and just comes periodically now. Though when it hits I can't even stand up for fear of falling. But now the biggest issue is my hearing. I go through periods of extreme hypersensitivity and tinnitus (ringing in the ears) that is so loud I can't hear anything else, which is a new and overwhelming experience. To put it in perspective a little, a car engine sounds like an airplane. The rustling of bed sheets sounds like 10,000 plastic bags being crinkled at once. People speaking in a normal voice sounds like they are screaming directly into my ear. And don't even get me started on Brinkley barking. And most of the time during these "episodes" or whatever lovely name they can be called, I get disoriented. I feel disconnected from my body, like there's a big gap between my brain and the rest of me. At it's worst I haven't been able to speak or understand people speaking to me, at best it's like one of my bad aphasia days where I forget normal words and feel REALLY stupid, all the time. Especially having a clinical job where sometimes literally patient lives are in my hands, it doesn't help when you're not at full mental capacity. And it's quite humbling, and humiliating, to have to call to another hospital and ask another dietitian to read your note to see if A) it makes sense because words are hard to put together and B) that you've done the math right to properly feed this patient. My entire life my mental status was the only thing that's always been fine, and now suddenly that's compromised. As far as the hearing goes, I've been wearing ear plugs for most of the time just to make things seem normal, but apparently that's not good and makes the sensitivity even worse. But there are some days like yesterday that I just HAVE to get as much silence as I can muster, so I'm taking one for the long run team by using them. It's almost like I have to make myself completely deaf, shutting out the world, just to keep my sanity. Watching tv has become silent movies with subtitles, and my darling, sweet husband is doing everything he can to keep things quiet around the house and putting up with having to read while watching TV. Last night he signed in ASL to me that I was beautiful, and I started to cry (though I don't think he knew why). I began to think "Is this my life now? Never being able to hear the soothing, melodic tone of my husband's voice? Never getting to talk to my family on the phone without video? Having to communicate solely through sign language?" And while I know that realistically that isn't likely to happen, the temporariness of it last night felt all too permanent. Thankfully at this point I'm getting some periods of solace, though they seem to come and go all too quickly.
I wish I could be writing this saying that I've had the next round of tests, they've found a diagnosis and there's a super easy cure. As hard as it's been physically to be dealing with this, the hardest part has by far been the mental battle. No one can truly understand the devastation of being the cycle anew unless you've had the unfortunate lot in life to experience it firsthand. For 24 years I lived without answers. Going day by day with a miserable list of symptoms no one could explain, but just had educated guesses on. And then it happened! The day I remember still so vividly to this day - the day I FINALLY was given answers. A reason WHY all the random things were happening and finally all the pieces of the puzzle were being put together. I got to meet an incredible group of people who really understood the walk I had been walking. I NEVER thought in my life I'd meet someone who truly and completely understood what it was like, and suddenly for a month I was surrounded and encouraged by them and together we learned how to take back power over our various illnesses. And honestly? I thought I was done. Done having mysterious symptoms without any conceivable cause, done going to specialist after specialist trying to find someone who would take my illness seriously. I had FINALLY gotten a routine down and made peace with where I was physically, mentally, and emotionally. I have a great job that is going to get me started down a path to my dream job, I'm completely living on my own and supporting myself, which is something that growing up was never going to be an option for me. For heaven's sakes I just got MARRIED! Another thing I had honestly given up on. We had just gone to visit 3 different countries in the span of a week and both had gone on a cruise for the first time and had the greatest honeymoon of all time. If anything this was my time. My time to just be irrevocably and completely happy. But now I'm back to the most dark part of my life? Back in the driver's seat with no steering wheel or GPS, and no police around to help guide me to safety. No one even on the road in sight, noticing I'm about to crash and burn (or at least feeling like I will). It is one of the MOST frustrating things in life to have something wrong with you physically and when you go to a doctor, or several doctors, and they don't seem to take it seriously or think you're just being an overdramatic woman, or worse - a pill seeker. Or they decide on a plan of care, some testing that will hopefully shed some light on what is rocking your world, but don't seem to have any conviction about getting it scheduled.
If you're still with me - congrats. I wish I could end this post with some spiritually convicting question or some wisdom that makes you feel all warm and fuzzy inside like some of my posts do, but this one is not one of those. This is completely an "I'm at the end of my rope with chronic illness and don't know what else to do but rant and yell at my computer screen to get a minuscule amount of emotional catharsis" post, which to be honest is the type of post I started this blog for. I'll admit this weekend in particular, I was in a DARK emotional/mental place. As I write this I am thankfully at least in a better mental place than I was, though it's still not the bubbly, happy person that I aim to be. I'm stuck in a pit of miserable waiting for these tests that may not even have answers for what's going on. I just got married a month ago. This should be the happiest time in my life, and I'm back in the worst cycle there is. Not to say that there aren't happy times still being had. I mean, I just got married!! Married life, as I mentioned, is the greatest thing in the world. And there's no way I could be as positive as I am without my loving husband encouraging me and being my rock right now. It's such an example of God's love for us to be living out marriage on a daily basis. There's NOTHING like that love. You can't describe it, and you don't know it until you feel it for the first time. And it just makes you think "if I can love my spouse THIS much, and experience this kind of love on Earth, how can anyone truly explain or understand the breadth God's love for us"? So there it is. The bright spot in the darkness (a not so subtle plug to my last post). If you're still reading - I'd covet your prayers. It's really scary being in a place with no answers, and no obvious signs of a hard road ending, and I'm tired. Not even tired - I am fatigued. Exhausted. Worn down. Burned out. I don't have much fight left, and I consider myself a relentless fighter. I need answers, and I need them soon. So please be in prayer that the testing comes through - and quickly. And that I can hold on to God's strength and use His power to get me through, because I don't have anything left.
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