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It's a Glitterful Life.

It's a Glitterful Life.

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Surrender

31 Tuesday Dec 2019

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 My word of the year for 2020 is, 

Surrender:“ To abandon oneself entirely to (a powerful emotion or influence); give in to.”

My definition:

  • To be able to able to abandon oneself entirely and just be still.
  • To be able to trust in God’s timing not knowing when it will come.
  • To expect a miracle not knowing how God will provide it.
  • To place all my worries, fears, and uncertainties in His hands every single day saying “I trust you.”

If you’ve ever spent more than 5 minutes with me you’ve undoubtedly realized that I am not one to “be still.” I’m not one who surrenders easily.  I’m a hot mess express, constantly moving toward the next thing without even finishing what I was currently working on or working through. “Being still,” is just not my thing.

As a Christian, I struggle even more. I know and whole-heartedly believe that I serve a God that loves me and wants only the best for me. I unfortunately do have a tendency to try and control every aspect of my life quite often. By this I mean I interfere where I should just be still, I assume responsibilities that were never intended to be mine, and I worry, where I should trust. I’m impatient and a control freak. Like I said in the in the above paragraph, I’m a hot mess.

My life is best described a mess of beautiful chaos. I’ve been entrusted with a journey different than most, at 23 I was diagnosed with Multiple Sclerosis. At 28, I was diagnosed with a more severe form an autoimmune demyelinating disease. My illness has been plagued with multiple relapses, multiple failed medications, and more than it’s fair share of disappointments and heartaches. All of this recently hit it’s breaking point when I was involved in a major car accident in November.  While driving home from work on a Thursday evening a truck ran a stop sign and we collided, leaving me with 19 broken bones, one of those being an extensive ankle fracture, requiring 3 surgeries so far and leaving me non ambulatory and back in a wheelchair, and dependent on others.  2019 saw me turn into a sad and angry person that I no longer recognize. I am determined that this will not carry into 2020.

With the word surrender at the heart of everything I do this year my hope is to turn over all those burdens I carry daily that aren’t mine to carry (MS, NMO, an uncertain future, etc. ) I’m also determined to surrender the little things, that not only steal my joy, but also prevent me from loving freely, serving deeper, and hold me back from the beautiful and glitterful life before me.

I can’t wait to see what 2020 has in store for me. I’m abandoning myself entirely. Surrendering to a power, to a wisdom, and to an understanding that is far greater than my own.I’m leaving 2019 and all the pain, fear, and defeat it brought in the past, and openly walking (okay, okay wheeling,) into 2020 excited to embrace the good that awaits.

Wishing you a happy, healthy, and blessed 2020!

– Laura

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Dear Younger Me,

31 Sunday Mar 2019

Posted by lwest1451 in Uncategorized

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Dear younger Laura,

First off let’s keep this real, like we do pretty much everything and just start off by saying this is weird AF to be writing a letter to my younger self. The younger self that didn’t know they had a progressive demyelinating neurological disease lurking within. The younger me that doesn’t know Shonda Rimes is going to totally ruin Grey’s Anatomy by killing off Mcsteamy, Lexi, sending Christina to what might as well be another planet and killing Mcdreamy. The younger me who thought she knew hardships, trials and tribulations but in fact knew nothing of the sort. Oh my dear sweet dumb younger self, if you only knew what all awaits you. In a weird way (weird being as I know I can’t) I wish I could save you. I wish I could protect our innocence just a little bit longer. I wish I could protect your heart, your self esteem, your wild child spirit, your belief that everyone in medicine is good. I wish I could hug you and hold you because I know what’s coming, and I know that you won’t let anyone hold you when it all comes crashing down, because you want to be the strong one, you feel you have to be the strong one; and you know that allowing someone to hold you during those vulnerable moments will cause you to completely fall apart, and we don’t particularly do that. In fact, we tend to avoid things like that like the damn plague. But that plan doesn’t always work out in our best interest (or ever), it leads to some unfathomable breakdowns that will leave you exhausted, alone and scared. It will lead to self isolation for a few too many days that turn into weeks.

You’ll have to give up the life you had planned. The pretty little pink glitter filled bubble that you crave to live your life in must take on a new form, a new image. And trust me, the quicker you see that and accept it, the sooner you will start to grieve and heal the dreams of what once was. Please don’t let me scare you, while you will give up some pretty big dreams, you’ll find the almost equivalence of these dreams in other forms. Let me give you some prequels into the joy that awaits. You’ll out of sheer desperation for a treatment that works allow physicians to infuse experimental chemotherapy through your veins, your hem-onc nurse brain having given such medications to your leukemic patients knowing the damage it’s causing to your already dramatic reproductive system. When that fails you’ll even sign a waiver to begin an category X medication knowing what that means for the future eggs inside you. And let me tell you now: IT WILL BE OKAY. Yes I know that was always our dream to be a mother, yes I know that one reason we chose nursing for the flexibility it offered when we became a mother, yes I know we bought a 3 bedroom house at 20 to facilitate this dream but like I just said it will be okay. Because getting diagnosed and taking care of patients with chronic conditions who have children will change your heart and mind on marriage and having children. I won’t get any further into that because I don’t want to start a controversy, just know we make that decision with peace and much thought. We also are so incredibly blessed to get to play the aunt role to some pretty incredible nieces and nephews and even a Godson, who you will fall head over heels in love with, so incredibly much it will fill the void in your heart, and be everything you ever needed.

I wish I could warn you, caution you, and pray over you, for you to  never lose the sparkle that makes you so uniquely you. But, spoiler alert you will. And it will hurt. Maybe even more than all the broken dreams, failed treatments and physical pain. You won’t mean for it to happen, in fact you won’t be able to even pinpoint when it slipped away. One day you’ll look in the mirror above the bathroom sink and realize you don’t recognize the hallowed eye, physically and emotionally exhausted girl starting back at you. And that my dear sweet younger self is the moment you will realize numbness is worse than heartache ever thought about being. Don’t worry though my darling, you’ll still catch glimpses of her, especially when you interact with your patients, you’ll see the little remnants of sparkle come through your words and actions, and as validating as it is to be reminded that that ever positive glitterful girl is still inside you, at the same time it will break your heart, when you realize how exhausting it is to bring her out from beneath the scars, failures and heartaches. I wish I could tell you this is the only work and personal harsh realization you’ll face at 26, but unfortunately it’s not. You’ll have your share of physical hurdles, but you will have coworkers who turn into more than family, that will fill in those gaps on the hard days and remind you the good you still offer. You’ll throw a full blown temper tantrum in the soiled utility room the first time you miss a omega port access. You’ll throw carts into walls and eventually come to rest in that beyond disgusting floor in old dried puddles of God only knows what as you break,but then your charge nurse will come in, and remind you why your invaluable, why you’re more than your shortcomings and failures. Then she’ll make you get up, off that floor, and send you in to access another port. And you’ll initially hate her for it. You’ll argue, drag your feet, even whine and beg not to have to do it, but you’ll lose that battle with her, (per the usual. 😉) and you’ll go in and nail that access, but more significantly you’ll concur that fear. Months,  later you’ll succumb to the fact that your bedside career is over. Your Hem-Onc career is over. But you know what? It turns out to be one of the best decisions you’ll ever make. Sure it hurts walking away from the floor that raised you, saw you through nursing school and taught you how to be a nurse, gave you some of your very best friends and supported you through your initial diagnosis and all the progression, but you’ll join a group of people who are just as supportive and who are amazing clinicians and people. You’ll join a physician who appreciates you more so than anyone ever has, who understands your illness and makes sure you feel valued and never limited by your symptoms. He’ll have maintance rewire the lights in the office, making them adjustable for your optic neuritis photosensitivity, he’ll continue to remind you  that you have value. You’ll fall in love with a new set of patients, a new group of frequently seen illness with their own medications and pathologies to be learned and you’ll learn to love your new role, even more than the one you left behind.

You’ll end up finally ending that relationship you fought so hard for. The pain of hurting another person due to your illness will be too much. The fear of it hurting to love you, will destroy your plans at any meaningful future with him. I wish I could tell you that this part will be okay, that it will get easier, that others won’t question your decision, call it wrong, selfish or cruel, but that my dear, would be a lie.

Rest assured though, you’ll find your glitter again. The fight to keep it, will be daily, but will take your strength, faith and bravery to their maximum potential. Like we said earlier on, this journey and life is not for the faint of heart, and you my dear Laura are not that. You are a fighter, with enough glitter to brighten the darkest days ahead. You are a warrior.

Love,

Future, current, you.

Dear younger me

I’m sorry for not getting better.

10 Monday Dec 2018

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While my disease journey is ridiculously glitterful and filled with blessings, love and light, there are dark, gloomy and cloudy parts that I struggle with. These consist of feelings of shame, guilt, and even embarrassment. I dream of being able to come back from an appointment with my specialist and let everyone know that things are improving and from a health standpoint I’m doing great, honestly I’d settle for a no changes, everything is status quo report, and I’m sure my friends, family and medical team would too.

What hurts the most is not sitting in a Dr.’s office getting the results or bad news, it’s what follows. It’s having to call my mother and tell her the MRI showed progression, it’s knowing she’s going to ask what we do now and knowing I’m going to have to tell her that there is nothing else to even try at this point. It’s the looks people give you when you return to work and they ask how your appointment went. Generic answers like “fine” and “okay” aren’t well received, especially by people who care about you, and can see straight through that fake smile and can hear the sad undertone even through the over the top cheeriness that my own voice struggles to expel. It’s the hurt in their eyes that matches mine, it’s hearing them apologize that this is my life, and wishing they could do something to fix it, it’s knowing that they truly mean it. The reality is, I wish they could too.

I struggle with feeling like a constant Debbie downer, a constant drama queen, I find myself wanting to yell at my own reflection “just get it together already, enough of the same old song and dance.” I worry that others feel the same.

The medical side of me, wants to yell at my own reflection even more; “why can’t you just get better already, look at all the resources that have been thrown your way, the countless hours multiple physicians have spent on you and your case, to get you to specialists, to get you top of the line medications, all for you to continue to have disease activity, all for you to have the rarest possible side effects leading to termination of the medication. Can’t you see how much time and energy, not to mention money that’s been wasted on you?” I feel guilty and ashamed; I worry that I’m a burden for my physicians.

To the amazing group of family, friends, coworkers, nurses and physicians I have beside me, behind me, constantly loving me, supporting me, cheering me on, and holding me when it all comes crashing down around me; I’m sorry. I’m sorry for not getting better, I’m sorry loving me isn’t all glitter and sparkles. I’m sorry loving me hurts sometimes. Please know, that if I could wiggle my nose, snap my fingers, or dance around my yard in a circle chanting some nonsense to fix all of this , I’d do it in a heartbeat, not for me, but for you.

Thank you for loving me, when it isn’t glitterful.

-Laura

When a diagnosis redefines who you are.

03 Monday Sep 2018

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A few weeks ago the MS society posted a question on their Instagram page that asked, since being diagnosed with Multiple Sclerosis have you had to redefined who you are and what you want out of life?

Absofreakinglutely

It didn’t happen right away. Immediately following my diagnosis and for the first probably 8 months, I vowed to not let a diagnosis redefine me. I refused to allow a diagnosis to be who I now was. Looking back it’s almost comical, for me and my story, because holy roller coaster of a first year batman. My first year with MS was a whirlwind of a ride. It set the course for what now has continued to be a wild roller coaster of the highest highs and lowest lows, plagued with unforeseen drops around every corner. Luckily I’ve learned to fasten my seat belt and use that grab bar since the first year 😉.

When you’re in your first year as a registered nurse, charge nurse, semi-real life functioning adult, trying to maneuver through life as a newly diagnosed chronic illness patient life is a little overwhelming. That’s a lot of new undiscovered territory, with not a lot of road maps and direction to go off of. I spent the better part of that first year fighting not the disease, but rather the diagnosis. My first instincts when things get hard, has always been to run. Ignorance is bliss, and this was my way of coping. I was convinced that if I worked 60+ hours a week, then I couldn’t be sick, because sick people don’t do that. I was compliant with medications only, I canceled and rescheduled doctors appointments regularly, convinced that if we weren’t talking about the problem, then it wasn’t there. If we weren’t obtaining MRIs then we couldn’t see progression, so all must be stable. This ridiculous game plan of mine lead to multiple hospitalizations and ultimately an over 4 month admission, where I underwent hours and hours of physical and occupational therapy, spent almost 6 months away from a job I loved and was unable to walk for most of. Spoiler alert: when you take a girl that lives life at 100mph and take away her independence and ability to walk, life comes to a screeching halt.

In an inpatient rehab hospital you spend 3 hours a day with physical and occupational therapy. That leaves 21 hours alone in your own head. It leaves no options for anything but redefining yourself. The first few weeks were hard. The shame, the defeat, the embarrassment that came with losing my independence; it still hurts to think back on. There were days and weeks I couldn’t look at myself in the mirror. I felt like a burden, I couldn’t look my family or closest friends in the eyes but I had never needed their love and grace more either. During this time I, thankfully relied on my faith immensely. I knew God didn’t bring me out into the waves to drown, and I knew there was a reason behind every single one. For once in my life I didn’t fight it, I allowed every wave of sorrow and defeat to crash over me, and I prayed for a reason and something meaningful to come out of each one. That’s when I truly redefined who I was, and what I wanted out of life. Consciously and subconsciously. By allowing myself to come face to face with reality, I was finally able to take the first step accepting who I now was.

Long story short this was the start of this blog, of realizing my journey could possibly help others or save them from the pain my mistakes had caused me. It’s what lead to me being able to stand here today and say yes I have Multiple Sclerosis, but it’s given me far more than it’s taken. Since being diagnosed I’ve realized just how special every day is, how magical independence is, how breathtakingly amazing every step is, how unbelievably blessed I am and just how amazing the people surrounding me are. It’s made me a better nurse, it’s taught me what empathy really is and has completely changed the way I view every patient encounter. It’s shown me what friendship, family and love are. My diagnosis has taught me that life is messy, it’s unpredictable and just when you begin to think you’ve got your bearings the next loop and twist appear and the roller coaster continues.

Have I had to ultimately give some things up since being diagnosed? Of course.

Was it easy? Absolutely not, it came with its own heartache, and somedays that heartache reappears and is just as fresh and raw as it was previously. But no matter what it is, a diagnosis, a marriage, a new job, life will always come with it’s fair share of disappointments, it always requires new plans, and revisions to current ones. Otherwise life would just be boring, and who likes boring? 😉

As cliche as it sounds, my diagnosis lead to me learning to let go of the pretty pink glitter filled imagine of what I thought my life should be, and allowed me to step into life as the person I feel called to be. Not every day is perfect, there are still days I struggle to let go of that image in my head, but those are the days life has a way of reminding you just how blessed and loved you are, and that my friends is breathtakingly glitterful.

– Laura

Yeses, Nos and Open and Closed Doors.  

27 Wednesday Jun 2018

Posted by lwest1451 in Uncategorized

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Maybe I’m just not a yes girl.
I’m blessed with so much and so many people I don’t deserve in my life. But recently I’ve realized that I’ve had more closed doors than opened doors in my life, more nos than yeses, and more failures than successes.( ohh that last part rhymed, someone call hallmark because I’m pretty sure that is definitely card material 😉)

While I’ve definitely never “had it rough” or ever had a closed door that didn’t lead to a opened door somewhere, I’m a girl whose life literally began with a no.
I was adopted at birth. My adoptive mother ( who will forever be the one I’m referring to when I say mother, mom or parents) was in the room when I was born, my adoptive father (see above parenthesis for future referencing) was in the waiting room, and they brought me home from the hospital to the home I was raised in, to meet the grandparents, aunts, uncles, cousins and family that would be mine. That blessing happened because of a NO. My biological mother didn’t want another baby, she had 4 at home already and was only 1.5 months postpartum when she became pregnant with me. Financially she couldn’t do what she wanted to do to terminate the pregnancy, so she went to her father who also met her with a no, no to loaning her the money and no to allowing another mouth to feed to be added to their family. So he had an add put in the local major paper and the rest is history. A couple who’d tried for 10 years, had 11 miscarriages, failed IVF and was ready for a baby said YES, and along with that yes I got 2 amazing parents, and was welcomed into a hot mess of a extended family that couldn’t be more mine if we were blood. This was the first time (and literally started before I was even born) that an initial no, lead to an even better blessed yes.

Fast forward 19 years later and approximately 88272 nos and yeses along the way. I was a brand new CNA, taking my pre-reqs for nursing school and ready for a real big kid big hospital job. I applied for I believe 3-4 different positions at the other “big” hospital in town and never even received a single call back or an email, much less an interview. So I held out for about 2 months waiting then accepted that as a NO and applied for the first position I came across for at UMC. My clinical education/assistant director called the next day to set up an interview. By the end of the week that initial NO from the other hospital turned into a YES at the best ( and only magnet designated in the region 😉😂🤷🏻‍♀️) hospital, filled with coworkers who’ve turned into family, strangers who’ve changed my life during the worst and hardest days, physicians who’ve changed my journey as a patient, saved my life, and put up with my nurse patient hot mess self. 7 years later here we are. Still living out the blessings and dream job that, that Yes lead to, with the most selfless, loving and coolest people on the planet beside me.
Next came a no that not a lot of people know about, but one that is important. My first time applying to nursing school was met with a big fat NOOOPE. And it hurt. Like I cried until I was doing the hyperventilating, unintelligible mumbling ugly cry. ( I found out years later it was because my application was thrown out because I didn’t have that stupid meningitis vaccine so it was technically “incomplete” 🙄)

I applied again next semester and received my YES. And let me tell you, if I would not have been in the class I was in, I would NEVER have made it through the hell that was nursing school back then. Seriously y’all students these days don’t know what hell is. Just ask anyone who attended SPC before 2014. 😂 That YES, also lead to some of the most valuable, and realist friendships that still exist today, even if it’s just a ” hey how are you?” during a patient transfer or a “hey you work in [insert specialty here] do you have any advice or recommendations for who to go to for a specialist.”                                    ((And No, Autumn, you don’t get a shoutout here, nursing school didn’t give me you as a Nestie. It gave me you as a damn evil blonde chick who threw Potter & Perry books at my head in 1st semester. 😂😉))

 
Believe it or not my initial diagnosis even began as a NO. I innocently and naïvely thought when I couldn’t see out of my left eye suddenly it was just an eye infection and went to one of the walk in clinics, they told me no, refused to see me and sent me to the ER. Long story short that lead to an MRI that lead to the “Hey you probably have MS and you’re being admitted for a week.” conversation.
Throughout this illness journey there have been several Nos, multiple closed doors that I still wish would have been open or could be reopened. I was once told I would never walk again, because there was absolutely nothing clinically wrong with me. That NO, lead to 2 open doors that have changed the entire course of my life as a patient. One to the physician and his nurse practitioner who would immediately recognize the problem that did in fact exist and eventually lead to the ability to walk again and work again, the other leading to a MS specialist, who would identify more answers to the problems I was living with and who would work tirelessly over the next 2 years to give me the quality of life I so longed for.
Medication and treatment wise the nos and closed doors have unfortunately outnumbered the yeses by far. And here I am, once again finding myself in the doorway of a yes, a door that was prayed to open so hard, and by so many people, and all I can do is stand here and watch helplessly as it closes. Luckily, this door will close slowly. In 18 months. My dream drug, my last Hail Mary, the drug I once compared to a child (🤷🏻‍♀️) will unfortunately not be a permanent solution or option for me. After beginning the drug JCV negative, 4 months in I’m now positive with a astronomically high index which I found out yesterday will end in my physician terminating the drug in roughly 18 months. My dream YES, is now a NO.
Like all the other initial NOs I’ve referenced above (with the exception of the first one because my little fetus self obviously didn’t care) this hurts. It’s a form of heartbreak like most nos are and it might even be worse to have those 18 months left, knowing what’s coming. Knowing that unless some other drug gets approved in that time I will be left with no alternatives, no other medication. But not left without hope. Because as you can tell by now, all of my favorite yeses, began with a no.

Until then, I’ll keep fighting for the glitter, and being thankful for this incredible glitterful life I live.❤️
-Laura.

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When chronic illness makes you feel unworthy and throws you into self isolation.

10 Sunday Jun 2018

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Nope, you read that title right, chances are if you have a chronic illness you can agree,and relate the that title immediately. If you’re lucky enough to not know what that could possibly mean I encourage you to keep reading and to thank your lucky stars.  

I won’t speak for everyone with a chronic illness, the story, emotions and expressions are all my own, but if you spend more than 30 seconds in a chronic illness group on Facebook, or browse hashtags on Instagram you’ll quickly see I’m not alone and the isolation our illnesses can cause though individual and varying are common.

I recently came to the hard realization after spending 3 weeks unable to play on my phone, write, read or do anything other than get lost in my thoughts, pray, and do way too much over thinking when I experienced an episode of optic neuritis in my “good” eye, leaving me virtually blind and with every reason to jump straight into that cozy, cave of darkness and isolation that I tend to make my home when something like that occurs, that I too turn to isolation, and struggle with the darkness so common in chronic illnesses. I tend to forget that I’m not some emotional bad ass brick wall made of steel that is exempt from having to face the hard parts, the messy parts, the sad parts and that crawling into my cozy hole of isolation and dealing with it all alone doesn’t actually “fix” a single thing and definitely doesn’t “save” the people who love me, no matter how hard I try to convince myself otherwise. Because if we are being truly honest, all bullshit, sugar coated little white lies aside, that is the hardest part of the entire journey for me. Feeling like a burden. Feeling like I’m hard to love. Feeling undeserving of that love and believing that it hurts to love me. You see God gave me this journey to walk in life. And I’m 100% fine with that, because I wholeheartedly trust Him, even when I don’t understand the paths, directions and detours the journey tends to take sometimes. However, the amount of associated guilt, hurt and pain I feel knowing that my family, and friends walk this journey right beside me and go through the heartaches right along with me is without a doubt the most horrible, painful feeling one could ever know. So even though the rational part of me knows that choosing to fall into that black hole of isolation hurts them too, it’s my selfish, vain way of protecting the ones I love most. Because honestly,  I could not have a better, more supportive, loving, beautiful or perfect group of people surrounding me. They are the reason I’m here,they save my life everyday without even realizing it. I love each and everyone of them to absolute pieces and would do anything in the world to save them, including from myself. Which is why I tend to push the ones I love and need the most away. So when my illness makes me disappear, turn into a hermit, hide away in a land of darkness, please understand the “whys” behind my actions. My worst fear is y’all realizing one day that I’m not worth the pain that comes with loving me, and you consequently walking away. So please don’t stop calling. Texts are great too but so easily dismissed and ignored (especially when I decide to be dramatic and take the visual impairment to the extreme.) Please don’t stop praying for me, praying that I’ll keep the faith as my big brother would say, and praying that I’ll find my way out of the darkness and into the glitter again. 

I also want to let you know that I’m okay. Even when I feel unworthy, I know it’s the darkness trying to win and I know even on the hardest days of this season/ journey that I’m exactly where I’m suppose to be, and that I’m still who God has called me to be. The ugly, dark, hard parts of this journey are in his plan, and someday I’ll hopefully see the reason why, and be able to give one heck of a testimony from it. A blog post explaining the last few months, my absence and reasons behind it is coming, so bear with me and throw a little patience and grace my way. 

And to the ones I love so dearly, please don’t give up on me. I know I’ve fallen down, lost every speck of glitter and the spark I once cherished and built an entire life around, but know I’m trying, and soon I plan on rising as the whole damn fire. In the mean time thank you for loving me when I definitely don’t deserve it. You are my why. 

“Whenever you feel unloved, unimportant or insecure, remember to whom you belong.”                     —Ephesians 2:19-22❤️
-Laura 

Dear physician who doesn’t understand your chronic illness patient.

03 Sunday Dec 2017

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Dear physician who doesn’t understand your chronic illness patient,
Hi it’s me. The twenty-something year old female in room 452 with Multiple Sclerosis. You claim you and your service know me. You even take the time to dictate it in your H&P that I’m well known to your service. You come in, like previous admissions, ask the same questions without listening to my response, do the same exam as always, ask confusingly why I have spasticity and no complaint of weakness. I explain for the 14 time I have severe spasticity, severe enough to require a intrathecal baclofen pump. You claim to remember, then tell me it’s not typical for my disease. I know this. I didn’t choose this symptom. I didn’t chose this disease . I don’t like to be a patient. I don’t want to be sick. Sometimes I wonder if you know this. You continue going through your typical spill, telling me the subjective symptoms I say I have don’t add up, how you feel this isn’t really qualifying for a “typical” MS patient. You ask me if I’m still taking my medication, remind me how I’ve failed or been unable to tolerate medication x,y, and z which once again is “odd”. You tell me that these symptoms, this onset of blindness in my left eye is “just part of MS, that there is no need to proceed with steroids because it won’t change the outcome at this point.” Because I shouldn’t be having this happen again. Because the MRI didn’t show any new active lesions so this is only a “pseudo flair”. I remind you it’s been over 24 hours since symptoms onset, that all labs, urinalysis, and chest X-ray didn’t indicate an infection which is the number 1 cause of a “pseudoflair”, that my MRIs are still showing new lesions even after trying medication x,y and z and that my left eye is unequal at 8mm and non reactive to light. At this your mood changes and shifts and you tell me it’s secondary to the drops ophthalmology put in. Even after I tell you that is incorrect, this presentation was my reason for admission and that ophthalmology didn’t use dilating drops in that eye, and said it was their belief that this was optic neuritis, you turn cold and say well it’s not a true MS exacerbation and we are signing off. You leave the room shut the door and leave me in pieces. You break me. You make me feel crazy. Like a hypochondriac. Like I’m manifesting these symptoms. Like I want to be sick.
But what you don’t know about me, or care to take the time to know about me is I’m one of you. No, not a physician. I didn’t put in the time, the schooling or the years for that. I respect you for that and I congratulate you on that. I appreciate your profession for that. But I am someone who wanted to study the beauty that is medicine, I was drawn to the science of it, the art of pathologies, I was also born with the desire to help people. So I became a nurse. Life was perfect. Until I got sick. Until you gave me this diagnosis. Until I started spending what feels like more time as a patient than a nurse. It’s been 3 years and still you haven’t “fixed” me, or even helped me.
But what you don’t understand is why you may not truly know me,  I know who you are. I walk these halls as do you. No, not as a physician, but as a nurse. Someone who sees the same scenario happen with other patients. Whether it be seizures, transient weakness, acute onset of confusion, or stroke symptoms. I see this similar scene happen. Because I’m the one, that stays behind in the room after you leave, to pick up the pieces of the patient, and the family that’s left with fear, dumbfounded, and confusion after your exit. I’m the one, who reassures them that there is indeed something wrong with them, their mother, their father. I’m the one who explains whatever diagnosis you just handed them that will forever change their lives. I’m the one who offers reassurance, hope and support that they will get through this moment. Yet I’m the one that when you leave my room, after dismissing my fears, my concerns, my symptoms, can’t pick up her own pieces, or even find it within me to fight my for myself anymore.
Luckily this is where my people come in, my tribe, my team, my group of individuals who are my saving grace every single day without even knowing it. They come in forms of childhood friends, coworkers who turned into family, physicians, and family. They become my voice when I lose mine due to your words. They are my advocate when I’m too tired, broken and confused to be my own.

And this is where my story has a happy ending. No, not because of you, or your team. But because of your lack of care, lack of knowledge and lack of expertise it lead me to seek a higher level of care, it lead me to one of the leading Multiple Sclerosis Specialists not only in the state and country but the world, it lead me to someone who cared, who saw that something was seriously wrong, who personally reviewed my MRIs and saw the problem immediately, and who has worked tirelessly to find the right treatment so that I may have my life back, and rejoin you in walking those halls.
So please don’t take this as a request for an apology or my attempt to make you feel bad, because that’s not the intent or goal at all. I don’t need nor want either of those things from you. But I do  hope you will remember my case, your actions, your words, and that every time you come in contact with a patient from now on, you stop and remember that person in that bed, in that office chair in the exam room, is someone’s person. They’re an aunt, a friend, a daughter, a sister and a human being who is clinging on your every word and trusting you to have the answers, solutions, and just simply validation, that what they are experiencing isn’t right and that something is wrong. Remember that. We as patients, know you’re human too, therefore we don’t expect you to have all the answers, and if you don’t, that’s okay. But instead of dismissing someone’s symptoms, someone’s suffering, show us that human side of you, admit you don’t know why what’s happening is happening and be human enough to admit it and refer us to the next specialist who just might be the one to change everything.

Sincerely,

Your former chronic illness patient.

Dear Newly Diagnosed MS Patient.

14 Tuesday Nov 2017

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Dear Newly Diagnosed MS Patient,

Welcome to a club you never wanted to be in, a club that lets be honest none of us want to be in or even visit. So you just got told you might have, do have, or are very likely to have multiple sclerosis.

Now what?

Now you get to have your moment to freak out. Seriously. Cry. Scream. Eat a gallon of ice cream. Live off of Starbucks and Dr. Pepper for a week. Wear the same pajama pants and oversized tshirt for 3 days and keep telling yourself your hair isn’t “that dirty’. Refuse to answer your cellphone for a week and only send out texts that say “I’m fine.” Do whatever you need to. You’ve just been handed a bombshell and you deserve to handle it however you want for approximately 7 days. Then you must get your shit together, because this is going to be a journey for which a positive mindset, and a wicked sense of humor are required.

Regardless of how you were diagnosed, whether it was during a whirlwind 5 day hospital admission following optic neuritits where you saw 999 different physicians who came in and threw 76 8 syllable words at you then walked out and left you in shock, or whether you’ve been fighting for this diagnoses for years the initial words “you have MS” are about the equivalent of jumping into a ice bath in the middle of winter.  It’s okay to ask 37493 questions, it’s okay to have to email or call your physicians office multiple times to ask the same questions or have them explain things just one more time until it sinks in. I was diagnosed a little over 2 years ago,  3 months after starting my first job as an RN. There are still days I call my primary care doctor back just to have him repeat what he told me no less than 2 hours earlier, I ask him the dumbest questions ever,  some that  probably make him question me taking care of his patients. ((Luckily he’s  the most amazing physician on the planet and the most patient human being I know. ))Do whatever it takes to give you peace of mind. Its okay, and its normal. Open the notes app on your phone and start a list of questions you have and don’t be afraid to ask them. This is all new to you, and you need reassurance as much as answers.

People will surprise you.

If there was one thing I wasn’t expecting it was the way people would shock me. Over the last 2 years I’ve had a few people who I thought would have stayed through anything simply walk away, but you know what? They were replaced with people who walked in.  People who I weren’t expecting to walk in. Coworkers, family, childhood friends who contact had been lost with, people from my hometown. They all stepped up and covered me in love, support and prayers.  And they’ve never left, through the good days, the bad days, the hot mess express moments, the melt downs, the projecting, they’ve stayed and been so understanding. I am internally grateful. Don’t push away the people who love you. Let them. You need it. You deserve it.

It’s okay to have bad days. It’s okay to temporarily give up.

Seriously, like I said in paragraph one, you’re allowed to cope how to you want to. You’re allowed to have days when you can’t be positive what so ever. But keep in mind, they better be short lived. Because tomorrow that sun is coming up, regardless of how you feel so you might as well get up, pull yourself together and go out and participate.

Learn how to be your own advocate.

This. This is quite possibly the most important thing I can share with you and sadly the number one thing I myself struggle with.  Throughout this journey you are guaranteed to meet some really good physicians and some really bad ones. You know your body. You know your symptoms. Never allow a bad physician to dismiss you, belittle your symptoms or make you feel borderline crazy. Be strong. Be brave. Stand up for yourself. You run this show. If you don’t agree with their plan of care say something. Don’t ever allow someone to force you to do something just because they have the letters MD behind their name.

And finally, find something to believe in, something or someone to fight for, and cling to it. 

Whether you’re religious or not you’ve got to have something to place your hope in. Whatever that may be, a higher power, faith, science, Nutella, seriously I could care less what you believe in, just know you’re going to have some hours when that’s all you have to cling to. That and your why. Your why is the something or someone you fight for, whether it’s your spouse, your children, your future, or just to say you kicked MS ass, find your why and feel strongly about it, because there will be some hours, some days, and some moments when that is the only thing that will pull you through. But you will pull through, even when it feels impossible, even when it hurts, even when it’s hard, even when it all just falls apart, you will make it through, and it’s going to be okay.

So once again, please accept my warmest welcome to this ugly, sucky club but please also know you won’t walk out of this storm the same person who is walking in right now. You will walk out a more humble, stronger, and beautiful person, because this journey isn’t for the faint of heart, but it does have the potential to be a beautiful and glitterful one.

– Laura 💓

Fighting for the glitter. 

30 Sunday Jul 2017

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Change is hard. Adapting is hard. Accepting that you can’t do something you once could do is hard. Feeling inadequate is heartbreaking. These are the harsh realities I’ve had to face recently. I never imagined the emotional side of losing physical parts of you, would hurt so much.  
Being nurse is so physical. We rely on fine motor skills every single day, multiple times throughout the day. Losing that part of me, and trying to adjust to feeling constant numbness and like my once flawless hands have been traded in for a pair of Mickey Mouse glove hands is annoying to say the least. Pair that with the new onset vision loss in my left eye and you’ve got the perfect recipe for a hot mess express breakdown. I never understood how something so seemingly small could wreck such havoc on my self worth and overall attitude toward a job I once adored until it happened to me. Luckily I work with and for some of the most patient, supportive and just awesome people around. Seriously. They know when I’m struggling, whether it’s physically or mentally. They know when to leave me alone and let me be mad at myself, and when to remind me that I’m more than my limitations. They know the perfect words to say, when I’m embarrassed, heartbroken and ashamed to have to ask for help just to start an IV, which for the record is something that breaks my heart every single time I have to do it. They remind me of the positive things I bring to the workplace, the difference I make in people’s lives and that I’m more than my shortcomings and failures. When I think that I can’t do this anymore, that I no longer serve a purpose in my work, they come in and remind me that I’m wrong, and give me the strength and reassurance to keep going. I could not walk this journey without them. 
The sad reality is the days of feeling inadequate are only beginning. Not being able to do something you could once quite possibly do with your eye closed while standing on your head is just a part of this cruel disease process. It’s something I’m going to have to learn to live with. Sooner rather than later. While I paint a pretty picture of being someone who doesn’t throw in the towel easily, that could not be further from the truth. I have plenty of moments when I want to quit, give up, run away to Mexico and live off of tequila, tacos and cabana boys for the rest of eternity. But this is the part of the journey when you find out what you’re made of. When the definition of strength is personalized and you learn how hard you’re willing to fight. Giving up permanently is not an option. Everyone has their flaws. Everyone has their struggles. And we all have our ways of dealing with them. Regardless of what that struggle, that journey, or that challenge involves the important thing is to keep going, keep adapting, and keep fighting for more glitterful days, especially on the dark days. 💖

-Laura. 

Holding on. 

18 Saturday Feb 2017

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Disclaimer: The following post gets  really real. The transparency and honesty that this was written in is raw and it’s hard for me to share. If I could go back and do anything about this journey differently I would have kept my diagnosis a secret. Social media would have never known about it. However, that wasn’t how I handled things during and after my initial diagnosis 2 years ago. Part of this is due to being 23 when everything started, another factor is because I never imagined things playing out like this,  I never imagined the next 2 years would have contained all that they have. However I did share it, and because of that I think now I have an opportunity to to share my story, my experiences, the good times and the bad in hopes that someone can relate, and in hopes that someone who is walking the same or similar journey can find reassurance, inspiration and know that the feelings, highs, and lows are part of it and it’s okay. I wrote this at 1 am on a Friday morning, after a long day of Doctor’s appointments while trying to find the strength to pull it together, pick myself up off the bathroom floor and go out and make the day happen. I feel compiled to share it and be honest because I do believe that in that  there is healing, there is reality and somehow getting everything in black and white text makes it a little easier to breathe, and if just one person going through a difficult season can relate and know that what they’re feeling is okay and not abnormal, then it was all worth it. 

 

Some days reality gets so real it feels like there’s no possible way I can do this another day. Some days it literally hurts to breathe, it hurts to think and I feel an unimaginable sense of hopelessness. Unfortunately these days occur way more than I’ll ever admit and the amount of shame that I feel, is enough to swallow me whole.  I’m ashamed that this is my life, that my friends and family fall subject to walking this journey with me. To the worry I cause them. To the stress that comes with loving me. I feel guilty that I’ll never be the coworker, teammate or person I was before everything happened. I feel ashamed  that I have a medical history and medication list that most 25 year olds don’t have for another 50 years. I feel ashamed, of the sadness, hopelessness and struggle. Some days I grieve for the old me, and the future me of what could have been.

Some days I struggle to believe that everything will be okay. I want to scream that life is not fair, and that this shouldn’t be my life. That it’s not fair. I don’t deserve this. My family doesn’t deserve this. My friends don’t deserve this. Some days I can’t see past today, because my heart is so broken.

This journey, this life, it isn’t easy. Some days, I swear I can hear my own heart break. I question how I’ll be able to continue to hold on. My greatest fear is that these ” some days” will become everyday. That the hoplessness will become constant. That one day, I won’t be able to hold on. That one day, it will all become to much for the people around me, and they’ll leave.  That one day I won’t be able to pick myself up, pull myself together and go out and carry on.

But thankfully today is not that day, and this bad day will resolve. In 1.5 hours when my morning alarm goes off, I  will pick myself up, take a shower, throw on those royal blues and go get things done. I’ll place my faith in Him and continue to praise him, and the world will continue to turn just as it should.

And life of course, will continue to be glitterful as ever.

-Laura.

The lotus is the most beautiful flower, whose petals open one by one. But it will only grow in the mud. In order to grow and gain wisdom, first you must have the mud — the obstacles of life and its suffering. The mud speaks of the common ground that humans share, no matter what our stations in life. Whether we have it all or we have nothing, we are all faced with the same obstacles: sadness, loss, illness, dying and death. If we are to strive as human beings to gain more wisdom, more kindness and more compassion, we must have the intention to grow as a lotus and open each petal one by one.

← Older posts

All Blog Posts

  • Surrender
  • Dear Younger Me,
  • I’m sorry for not getting better.
  • When a diagnosis redefines who you are.
  • Yeses, Nos and Open and Closed Doors.  
  • When chronic illness makes you feel unworthy and throws you into self isolation.
  • Dear physician who doesn’t understand your chronic illness patient.
  • Dear Newly Diagnosed MS Patient.
  • Fighting for the glitter. 
  • Holding on. 
  • There’s No Use Crying Over Spilled Milk. Spilled Wine Though? Totally Different Scenario.
  • When God Doesn’t Fix It.
  • Thank you.
  • Coming back. 
  • ||12 months, 365 days, 525, 600 minutes.||
  • [[Bad Days & Black Clouds]]
  • ||Laura Ann West||

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