The Struggles of Being Muggle Sick

"But I will restore you to health and heal your wounds, declares the Lord."

-Jeremiah 30:17

     I was struck with the plague. I should have known it was coming. I took a trip on a flying flu can last weekend. And I should have known that with my iffy immune system I was going to get sick. Even though I wore a mask the entire time I was in the airport and on the plane and I washed and sanitized everything. I still hit the infectious disease jackpot. 

    It started Wednesday night. I was nauseous but I blamed it on my lack of eating healthy food. Then Thursday I started noticing muscle fatigue and just all over fatigue in general. I woke up and went into work because I thought it was just a cold. I could barely swallow because my throat was sore and I had the chills. On Friday, I left early from work. And on my way home (TMI Upcoming) got incredibly sick on the side of the road. I decided not to risk it and went into Urgent Care. Where I was hit with the news I had strep throat/ the Hong Kong flu virus/ and a small UTI. Oh the joys. My fever was also creeping up. 

     Now for most people.. yes, this would suck. But not only am I sick with this normal people crap. I still have to manage all my rare crap. I still had to wake up from my Nquil coma to change my benadryl bag. I still have to make sure I'm taking all of my dreaded potassium plus more to stay on top of the sickness. I am allergic to almost every anti nausea medication so I was on my own on that front. The antibiotics they gave me need to be taken four times a day. Being sick and then normal people sick on top of it just wears on your body, both mentally and physically. I think I have finally turned a corner and am on the upswing of things. Hopefully. But this is just a good reminder to everyone, chronically ill or not, wash your hands and stay home if you're contagious. None of us want to deal with this. 

With Love, 

Elizabeth <3 

I Am Allergic To Benadryl

If you don't know I have Mast Cell Activation Disorder. Which means at some point in my life I will become allergic to everything. It sucks and I hate it but it's a fact of life that I face every day. So much so that I take 50 mg of benadryl every four hours to keep symptoms at bay. This is causing me to be sleepy. All. The. Time. But because of this disease if I don't have name brand benadryl and not the "allergy relief" brands I am okay. Because the way the medication is compounded I am allergic to. So if all you have is benadryl and it's an allergy relief brand I will take it. Because it doesn't affect my body enough that I'll care. However; knowing this about myself I do make life threatening decisions every second of every day. Here's How. 

I AM Allergic To Water 

Knowing this about myself sucks. I am so hyper aware of everything all the time that I question if the water I drink will cause anaphylaxis. I love certain brands of water and I refuse to drink certain brands like Arrow Head. I don't know how I decide which water to drink and which water not to drink but I know that I hate Arrow Head so much that I wonder if it's causing an allergic reaction. And I know that I like water from a Britta filter so much that I wonder if it's because I'm not allergic to it. I also wonder if this is a big reason I love swimming but don't go. There are some pools I'm in that I get so itch and red I wonder if I'm allergic to the chlorine. Which is why I think I've had so many severe reactions at Wet N' Wild I refuse to go there because I wonder if I am so allergic to their chlorine it's affecting me I have to go to the hospital. But I wonder if I were to go to another water park I'd be 100% fine. 

Sleep Is A Trigger

I am not allergic to sleep. But sleep affects my life so symptomatically that I am. Because I sleep is such an allergy symptom relief for me I feel like if I just go to bed for a few minutes I'll be fine. That lack of sleep and sleep exhaustion makes it look like I'm drunk. So if my symptoms are bad the likelihood is that I am so exhausted and dehydrated that I look 100% normal if I haven't slept a solid amount in the last month. So if I ever seem drunk, high, or tired. Tell me so I can go sleep for a few hours. 

I Hate Unfamiliar Social Situations 

I want to go to church and youth group so bad but have never found one accommodating symptom wise that I have never gone. Now that I know this there were several places I felt safe enough to and never gone and I regret that. So if you feel comfortable handling something if it were emergent please let me know. Because I probably want to but symptom wise I am not because I don't feel safe there. 

Life with this disease is a living hell. I can't explain that to people. But I wouldn't wish it on the worst person. So please take that into account if I cancel plans. 

With Love, 

Elizabeth <3 

Ephesians 2:5 

HOW to Best Help Me In An Emergency Situation

     Everybody lately has been asking me how. How can I best help you. Right now what can help you? With life right now this second how can I help you. The truth is guys when you ask me that... I don't know how. How is such a big word for me that the way I use it in my head I have talked myself right to unconsciousness twice... today alone. Who knows how many times my words in my head have affected this before. But what I have figured out is how you can best help me in the future. When something emergent medically in my life happens I now know what you can do to help me medically! Here's how.
My Thoughts And Anxiety Affects My Health Directly 
I don't know  how everybody else's mind affects them when they're sick. But I'm sick so often my brain is OK with it that I talk to myself the whole time. That to everyone else when I'm in the hospital it doesn't matter what I'm going through but I am the happiest pers

on there. So much so that when I'm hooked up to a breathing machine that is breathing for me so much that I'm happy. And I can't explain that feeling to someone unless you've ever had it happen to you. And I'm okay with that.
When I am Unconscious I Can Hear EVERYTHING you say 
I don't know if you know this if it does 100% so please act like it does. When I am passed out on the side walk so much so that they called a full code on me they started CPR on me I could FEEL it AND HEAR it and still REMEMBER it afterwards so when dealing with emergency situations such as this please keep this in mind when doing things. It will 100% affect me in the long run. So if CPR IS 100% NECESSARY IN THAT MOMENT DO IT!!! Because it will help me positively.
You Are Going To HAVE To Talk Me INTO Things 
If making me feel better is going to influence me taking my epi than please do that. Right now positively impacting my health would be to take epi because I know this. But long term I know that it's not. So please do talk me into things if you think it's necessary no matter how closely you're trying to positively impact me.
I Can't Describe Things To You 
Medically, I know the right words to describe things to you that you understand what's going on to me. Mentally, I have ZERO clue. So when I tell you I have the most severe chest pain I've ever had in my entire life. I know that that is going to get me admitted into the ER. Mentally, I can't describe what that feels like except for where and how much. If you were to ask me where I'll tell you and how much I'll tell you on the pain scale a ten. But mentally you doing know that that means my throat is also extremely itchy and swollen, I'm constantly burping because I'm nauseous, My chest pain is so severe, I can hear, I can talk, I can breathe but I'm still I am unconscious. I can't explain that to anyone and I wish I could. Which is why for so long so many medical professionals have thought I was FAKING being passed out.
Knowing these things I have been surviving for so long I am scared to go to sleep and it is affecting my day to day life. So PLEASE next time you think something emergent is happening like the fact that I am itchy or I tell you I have another life threatening symptom please tell me hey Elizabeth do you feel like you're in anaphylaxis right now. And I say yes please DO something about it and try to talk me through it. Because I may be mad at you for asking when it happens but PLEASE know I will not be mad at you for it later.
But still. Even after saying this I may only need xanex and be 100% FINE living normal life. So when all of these emergency things ARE happening please be the smart one of the situation and say hey maybe all she needs is anxiety medication at a high dose and be fine. With my health I am toeing such a thin flexibly placed line that it is both POSITIVELY AND NEGATIVELY affected my life. And because of this please remember these things when I am struggling symptom wise and look fine and every last medical professional is telling you it's just anxiety because my reality is it probably is JUST anxiety and I am  "over reacting".
I am just now figuring this out. I am struggling so much so physically that no one has pointed it out for days and for the first time I am realizing holy shit. Right now if I were in the hospital maintaining this kind of homeostasis for so long medically I WOULD without a doubt be dead right now because they would be doing CPR on me right now.
I know that freaks everyone out and that makes you scared to be with me alone. Trust me. I get that I am scared to be with me alone to the point I just choose not to sleep because I'm scared. I'm realizing that so much right now that I am contemplating if I were this aware all the time I would be in the hospital in 15 minutes. And that scares me. So if I ever ask you to drive somewhere please know medically I can. Mentally I don't know how I could even survive to get there. Which is how I'm trying to judge getting to places. And that's not fair to anyone. So know if we don't hang out or I bail on plans it's not because I can. Because I can go to work, I can go to Nebraska, I can drive, and cook. But right now I don't think that I will be able to. And that's okay.
Sorry this was such a long one. But thanks for sticking around! I appreciate it. If you ever have any questions on best to help me please ask me. I love educating people about what's going on in my life. But I never call or respond and that's just because I can't.

With Love,
Elizabeth <3
Jonah 2:1

The Fire During My Hospital Stay

     Oh fifth floor adult inpatient unit, how I wish I wasn't so familiar with your halls. I was recently released from a five day hospital vacation. I wish I could say that it yielded more answers to what feels like my never ending health problems, but alas, it did not. I don't want to say it was a complete waste of five days and a ton of hospital bills, but right now that's what it feels like. I didn't have my computer with me to update my blog while I was there, but I did have my phone! So here's a recap of me week!

     Intake was about a three hour process. I was supposed to be a scheduled admission but something on the hospital's end got messed up and there wasn't a bed already ready for me. Which was frustrating and I should have just ran for the hills then. Thankfully, I wore my comfiest clothes and had my phone charger handy so sitting in the waiting room wasn't a huge deal, I was just hungry.
      While I was sitting in the waiting area starving myself to death my body had a different idea. I had an allergic reaction. I noticed my chest was super itchy and that I was starting to get nauseous. I followed my protocol; take 50mg of oral benadryl and wait. After about ten minutes of trying not to itch my chest my throat began feeling tight. I took a puff of my albuterol inhaler to see if maybe that would help. No relief. It started to get way worse. The impending doom feeling was setting in which is my sure sign it's time to get help. I staggered up to the front counter clutching my chest. The lady could probably hear my breathing from across the room. I stabbed myself with an epi pen and we quickly got me a wheelchair over to the ER. I was then admitted as an ER patient and six hours from the time I originally showed up that morning I was taken to my room. It was a frustrating start to the next four days.

     Day two was supposed to be my big testing day and then go home on day three. Turns out that wasn't the case. Since being admitted I hadn't been able to go a full 12 hours without a near anaphylaxis episode. And without knowing what was triggering them my doctor wasn't comfortable sending me home. The silver lining of having so many reactions in a controlled environment is that we were able to constantly monitor me throughout the whole thing. The doctor said I have what he would call "atypical anaphylactic reactions". Which means that instead of my blood pressure dropping like a normal anaphylactic reaction mine actually sky rockets. 10 minutes before a reaction my blood pressure would be around 115/70s. During a reaction my blood pressure would shoot up to almost 180/90s. This would happen consistently almost every single time. After doing some research my doctor was able to link this to mast cell activation. He said a lot of patient's with the same thing as me have the same time up blood pressure jumps during a reaction. He said this is probably why it gets mistaken for a panic attack so often. It's highly highly unusual that the blood pressure would go up instead of down. So at least we're slowly learning new things about my condition. Baby steps right?
     Day four was the most difficult day emotionally. I was just done with being in the hospital. They wouldn't let me off of the inpatient floor (for good reason) so I felt like I was trapped. The floor went in a circle and if you walked that circle 9 times it made a mile... I walked four miles that day... I watched several episodes of HGTV and The Food Network shows only because that's all that was on. I was starting to get a meek outlook on being there. Up to this point I was fine with being an inpatient. I knew that by being there I was safe, getting the care that I needed, and we were learning more about how my messed up body works. But day three my brain was just done. My nurse was a little on the crabby side and wasn't much for small talk and conversation, the medication they had started me on was starting to make me feel weak and lethargic and I was starting to get sick of hospital food. It was just all around a bad day mentally. On top of all of that my IV decided to start leaking a strange color fluid so we had to start a new one in my hand. Which is my least favorite place to start an IV. I hate it, and it took 45 minutes and a pediatric nurse to find a vein that was usable enough. The only real excitement I had that day was this fire alarm/ drill. It ended up being a false alarm but we were actually told to be prepared to evacuate the floor. Because a real fire had been reported on our floor in the East tower. The fire department showed up (none of them were cute dangit) and we were given the all clear and I was able to resume my laps around the hallway.

     I was finally released around noon on day five! No really big new news to report, but at least I had a little more information. At least I had been validated by a doctor that this wasn't anxiety or all in my head. As sucky as it was I would do it again to learn more about how to better take care of myself, and how to better treat my reactions. Hopefully, I'm able to stay out of the hospital for a while though. This is me in my car with my IV site bandaged up which means I got the okay to go home! Friends, whatever your sucky situation is this week, hit it head on. I believe in you! 

With Love, 

Elizabeth <3 

   
                                                                                                             

She Told Me This Is Going To Kill Me

      This picture was taken back when I went to Vegas last month. I challenged myself to go hiking, not my smartest decision I know, but I love hiking and I wanted to prove to myself I'm not going to let anything stop me. So I did it and this was my victory picture. What you don't see is the before this picture. The 100* weather, the heart rate of 190 for most of it, the having to stop and sit every 5 minutes, the six times I nearly passed out, and the three times I actually did. This was right when my health really decided to take a turn for the worst. For me, this was a documented picture of the beginning of the end. I want to go back to how I felt in this picture.
    You see, a week before this picture I was diagnosed with Postural Orthostatic Tachycardia Syndrome (POTS) and a week after this picture I was diagnosed with Mast Cell Activation Disorder. I'm currently in what doctors are calling a "flair" of my MCAD. I have been in the hospital multiple times for anaphylaxis that has nearly killed me. One of my visits had sent me to the ICU for a couple of days because I was just so unstable. While I was there my doctor came in and said those life altering words. "We don't know how else to treat you, but eventually this is going to kill you, we just hope it's not soon." Who wants to hear that?! Who tells someone that news in that way?! I try to fake my way through this illness all the time. And I know I do a pretty good job of it when people tell me they think it looks like I enjoy being sick. I don't, I hide the endless nights crying myself to sleep, the constant prayers to God to change something... anything. I don't know why this is happening to me. I don't know why he has put any of this in my life and I hate it. I've had multiple yelling matches with my wonderful creator asking why me, what did I do to deserve any of this? So I sat there and swallowed that awful news and put on a brave face in front of the doctor. I didn't want her to know how broken I was inside at that moment. As soon as she left I lost it. I started crying completely alone. And I didn't stop crying until my heart rate got so high that I passed out. I cried myself to unconsciousness over what I just heard. I'm not scared of dying, that's not what scares me. It's a part of life. It happens to everyone and I know that through my awesome and wonderful God I have an eternal home in heaven. So it's not dying that scares me, it's the fact that THIS is going to kill me. That I could go because I can't get to my epi pen fast enough. It's the fact that I have something so rare and so new to the medical field that my doctors are SCARED to try any aggressive treatments. And she dropped such an atomic bomb like that and then released me from the ICU and sent me home where I am alone most of the day. Where I'm not hooked up to monitors 24/7 that detect what my body is doing before I do.
     There; in that hospital room is where I realized this is going to be a life long struggle until it eventually kills me. There is no cure. There is no out. I would love to sit here and write to you that I have moved past this moment in life. That I'm back to being able to hide my illness and living life to the fullest, but I'm not. I'm still struggling through that news, that realization. But, while I'm struggling through this I am still finding strength in my Lord.
"Even though I walk through the valley of the shadow of death, I will fear no evil, for you are with me; your rod and your staff, comfort me." Psalm 23:4
     I will continue to fight this and battle with doctors about treatment options and try everything I can to get ahead of these diagnosis' and I encourage you to do that as well. Where ever you are in life, keep going. It's a dim light but there is definitely a light at the end of this dark and twisty tunnel.

With Love,
Elizabeth <3

Hospital Admission June 2017

     I've had a rough go at it. Tuesday night while driving home from a friend's house I went into anaphylaxis. It took two epi to get it under control and a ton of benadryl. Even though I asked to stay under observation the doctor said he didn't think that was necessary and sent me home. I have no idea what I reacted to that night. The next day I had another reaction and once again was sent to the ER. And here I sit two days into this hospital admission with no promises of breaking out of here anytime soon. You see the problem is I'm going into anaphylaxis all the time. Every couple of hours. They've had to give 4 rounds of epi since 3am this morning. And that sucks, I'm holding up as best I can but I'm not going to lie, not knowing what's ahead is scary. And every time my throat starts swelling up it's frightening. I feel like that's when I meet Jesus, that's when I'm going to start going into the light. The thought that these reactions have the potential to kill me doesn't sit well with me. I know I'm in the best place possible, I'm under 24 hour observation and the medicine to keep me alive is only minutes away but it's still something I think about. I'm being moved up to the ICU tonight so we can hopefully get a hold of all of these reactions. This hospital isn't used to dealing with my conditions so they're nervous about trying anything aggressive. I just want to go back to a normal life.
     I've had a lot of thinking time since I've gotten here and I think it's time for me to move home. To be near a better support system. I don't know when that will be but I think it's time. They've put a lot of emphasis on this diagnoses of mast cell activation disorder and postural orthostatic tachycardia saying my life will never be the same. That I may not be able to return to the job I love, to the activities I love, that I will have a more limited quality of life. And I don't want to accept that. I don't want that to be my destiny. So I think it's time to go home, to ask for the help that I need. And that's a hard pill to swallow. Because in my head that's giving into this disease. That's letting it defeat me.
     These are just my thoughts as I sit next to window wishing that I could be on the outside and not stuck in here. But I'll make the best of it. I'll keep going and friends, you should too.

With Love,
Elizabeth <3

Why I Refuse to Be "Sick"

     Yes, I am sick. Yes, I have been told that unless we gain control of what is happening in my body I will not live a full lifespan. Yes, it sucks and I am constantly living in fear. But the thing is, I refuse to fall into that "sick" role. I'm back in the hospital... again. But I don't want to sit in bed in a hospital gown and be sick. If they allow me, I get up and put on normal human clothes. Of course they're comfy clothes like sweats or my favorite pair of pajama shorts. In the morning I keep to a routine as much as I feel I am able to. I put on makeup and brush my teeth, shower, and change. Because if I let myself fall into a sick routine I find myself falling into a sickness depression. 

     I refuse to let my limitations stop me from going out and enjoying things. Of course I wear my mask because that helps keep me safe, but if I want to go out kayaking with people I won't let anything stop me. Of course there will be days when I am physically incapable of doing anything. Where I have to stay in bed and hope that today isn't the day the Lord takes me home. But on days where I can I get out of bed and participate in society. I do my school work and try to manage life. Because I refuse to let these random illness define me and take my enjoyment out of life. I refuse to be "sick". 

With Love, 

Elizabeth <3 

I Almost Went Paralyzed Again...

     On Friday my cardiologist officially diagnosed me with Postural Orthostatic Tachycardia Syndrome. Because of that he increased my mididrine dose from 5mg daily to 15mg. I'm not a huge fan of this medication to begin with it always makes me nauseous and if I don't eat within ten minutes of taking it I get extremely sick. Yesterday, even though I ate when I took it at lunchtime, I must not have ate enough and ended up getting violently sick. The problem with this is that my potassium will drop incredibly fast when I get sick. Even though I was trying to keep up with me getting sick by taking potassium it wasn't working. I was still starting to feel the effects of low potassium. My team and I decided it was best to go into the ER to be monitored and replenish the potassium safely instead of guessing at home.
     I was triage and taken to a bed right away when they saw how high my heart rate was and that it was also skipping beats. I could barely walk, stand, and breathe on my own by the time I got there. I was incredibly anxious because low potassium paralyzes you, it starves your muscles until they are no longer able to move and then major muscles start shutting down. The last time my potassium was this low I was taken to the ER by ambulance and the paramedics were breathing for me because my body just didn't have the capability anymore. My potassium was indeed extremely low at 2.4. I was starting to have tremors and bouts of not being able to breathe. We started infusing IV potassium as quickly as we could. They gave me a total of 160meq of potassium over a four hour period. Unfortunately, potassium is also hard on my stomach so about two hours into the infusion I ended up getting sick again and we had to redo 80meq of potassium. I was in the ER for a total of 8 hours. The doctors there and I decided that if I responded well to this treatment then there wouldn't be a reason for me to stay overnight because we do know what caused the initial drop. I'm extremely thankful for my team of doctors who I can call whenever I need them as well as amazing ER staff who were quick to react and got me back where I needed to be.
     I'm going to talk to my cardiologist on Monday about looking into other medication options or seeing how I respond to a lower dose. Hopefully, we'll be able to figure everything out soon and I'll be stable enough to go back to Nebraska in a few weeks!

With Love,
Elizabeth <3

What I Wish I Could Tell You

   * This post is something I have been struggling with lately. I'm sure this is something a lot of people with chronic illness struggle with as well but these are based on my experiences and everyone's experience may be different. If you have anything you would like to add let me know! We're a stronger community when we build each other up and share though and ideas.*

Hi friends! I decided to make this list because I'm not good at sharing what I'm thinking aloud. This is a list of things I wish I could tell my boyfriend. I haven't shared these with him directly because it's a lot to talk about and once again I'm better at putting my words onto pages instead of sharing them out loud. So here's my list!

*We started dating before I was seriously sick. You were kind of pulled into this out of the blue and the fact that you've stuck around this long means so much to me.
*There are very few days when I feel well enough to go out or be social. Please be patient with me when we have plans and all I can manage is sitting on the couch watching movies with you.
*It takes so much energy to get ready everyday let alone get prettied up to go out. If you come over on a non date night and I'm in sweats with my hair up in a bun please don't be offended. I want to look good for you but sometimes I just can't.
*I know I sound needy often, and trust me when I say I try not to be, but sometimes I just want to talk about life and you're the only person I can think to text. Sometimes just asking how I'm feeling that day makes me feel special and thought about.
*I know I can't just rely on you. That's a lot of pressure to put on someone. I try not to only rely on you, I try to find support in other people too. I'm sorry if you still feel like I'm only turning to you. You're still someone who makes me feel safe and like everything is going to be okay.
*I wish you would just ask me questions. If you have a question about what's going on with me health wise ask, if you want to know why I canceled plans, or if you haven't heard from me in three days and want to make sure I'm still alive just ask me. I'm not good at volunteering information. I am better at explaining things as it is asked.
*Just by being someone I can talk to you already help me so much.
*I would really really love it if when you know I'm having a shitty day and you have extra time if you just ask if there's anything you can do to help. There are some days when walking from my bed to the couch is enough to start planning my funeral let alone trying to figure out how to feed myself. Even if you don't have time to hang around dropping off food so I at least don't starve from salvation is enough for me to never be able to thank you enough.
*Please tell me if I'm being to needy or clingy. It's hard for me to keep myself in check and sometimes I don't notice I'm to in your face.
*I'm still Elizabeth, the joyful, delightful, fun human being I was when we first met. It's just masked sometimes. I try to bring her out as much as I can!
*The biggest one I want you to know is you always have an out. We're dating and my health is a lot to spring on someone and expect them to just be okay with. So I want you to know that if it gets to much to handle you have an out. You can tell me that all of this is to much handle and walk away. No harm, no foul. It will suck on my end but I would completely understand.100% I would not hold a grudge against you for walking away. I hope and pray that you don't, that you stick with me through all of this the good and the bad times, but I understand if you can't. But, just a heads up, if you do take the out I may be keeping the shorts I may or may not have stolen. Mostly because they're comfy as hell.
*There's a lot more that I want to add to the list but this is it for now. Thank you for sticking with me this far and putting up with the sick Elizabeth. It may not get better but, I will learn how to cope with it better. Better days are to come and I hope you're apart of them.

With Love,
Elizabeth <3

The Daily Climb: A picture album update

Hey friends! I've been struggling to write lately, but I have been taking lots of pictures. I have put them together in a viewable album. Hopefully this can give you guys a better look at what day to day life is like. I hope to do more of these in the future because I like doing these way more than vlogging. Let me know what you think! I have lots of doctors' appointments coming up that I'll update you all on soon. I'm sending my love to all of you!
With Love,
Elizabeth <3

The Daily Climb Photo Album

This Is Real Life

   

     I got off of work at 6 am which means I was home by 6:30 this morning. Wearing my boyfriend's gym shorts and my work polo I stumbled out of my car trying to get the energy to walk up the stairs. Only after being called a hooker did I find that energy, but that's a story for a different day. We had a busy night at work last night and I only managed to find about an hour of sleep in between calls. Which is fine. I love my job, and if I lose a little sleep it's not the end of the world. I had nothing planned for the day today besides doing around the house things so I wasn't worried. 

     I got home to find all the laundry I did yesterday folded on my bed. I struggled to put it away so I could crawl into bed and go back to sleep. I finally did it, turning off the TV and closing my curtains I finally crawled into my happy place. I was able to get about an hour of sleep... and then life decided to throw me a curve ball, because why the hell not?                                                                                                           Sitting in bed my heart rate began to climb way higher than it should. It started climbing slowly. At first it was slightly elevated at 120 resting, no big deal. I took a few deep breaths and figured it would pass. It didn't. A few minutes later,

after doing nothing but laying in bed, it rose to 140, and then a little more to 160. I was getting really short of breath. Just sitting up was more of a struggle than it should have been. That's when I decided to take myself in.                              Upon ER intake my heart was in what they call "SVT" which is a fancy term for an insanely fast heart rate and also rather dangerous if left untreated. My heart rate had climbed to 186 resting, my breathing rate was on the higher end of the normal range and my blood pressure was through the roof. These things aren't normal for a 20 year old. Then again when have I ever been normal?
      I was marked as an urgent intake which means there were 6-7 nurses waiting for me when I was wheeled back. They took an EKG and labs, a chest Xray, and a urine sample all within 5 minutes of me shakily walking through the door. And then they left, and the quiet started in. I came prepared with a blanket from home and my tablet to watch Netflix on and started the waiting game.
     The nurse and doc came in about 30 minutes later to tell me that my potassium was indeed low. 2.7. This isn't the lowest that it's been but because my symptoms were so bad we decided to both IV and oral potassium. This IV potassium is about an hour and a half long process. So I settled in again for some Netflix and maybe get some sleep. But unfortunately that didn't happen.
     I wasn't able to eat anything before going in so my body was being pumped full of potassium on an empty stomach. Which doesn't go well for me usually and today was no different. The cramping and nausea began around 2:45ish and it was like hell on Earth.

     I was determined to power through the nausea. To keep the potassium IV running because I knew ultimately that's what was going to make me feel better, that was what was going to calm my heart, and the tremors, and the headache, and muscle spasms down. So for the next 90 minutes I sat up in the ER bed getting sick. Coughing up everything I had in my stomach, which was very little. It was miserable. If at any point someone says to me that I'm doing this just for attention needs to look me in the eyes at my worst moments and then go for a long hike off of a short bridge. (But I digress) 

     3 pm rolled around and the lab came back in to draw a second round of blood. I was told that if I had come up into the 3's that doc would let me go home. 45 minutes later the results came back. I was free to go! I still had muscle cramps and extreme nausea but it was no longer life threatening. And I can manage non life threatening at home. 

     So here I am laying in bed with all the lights off, with the only noise being the fan by my bed. I'm laying here feeling half dead. I tried eating something on the way home but it all came back up a little bit later. I'm still awfully dizzy and shaky so I look like an old lady carefully walking to the bathroom from my bed. I'm extremely nervous to walk anywhere in my apartment without my phone on the off chance I fall and am unable to get up and need to call someone. I fear that my potassium will drop again even lower than earlier and paralysis will set in. Because that would be rough. I don't know if I can do an overnight hospital stay right now.                                                                                                                         But friends, this is real life. This is what an invisible illness looks like on it's less invisible days. I try to everything I can to manage it and keep it at bay, but there's still rough days like this. There are still going to be days where everything I have just isn't enough. And I have to be okay with that. I have to take it one step at a time, not even one day at a time, just one step. I'm sure I'll be back to my normal self tomorrow but if I'm not I'll adjust. Because that's part of real life. 

With Love, 

Elizabeth 

My Half Dead Night

     This is what conversion disorder looks like. It creeps up on you when you least expect it. For me, last night it started while I was being productive. While I was getting things done and up and about. It hit me like a ton of bricks. Like being ran over by a truck and then that same truck backs over you again and again. I had to sit down because I was nauseous and the world was spinning. I had to rush to the bathroom because I had to get sick. Laying on the bathroom tile was my only option for a while... And then the chills set in. I couldn't get warm. I had my bed heater turned on in pajama pants and a sweatshirt and I still couldn't get warm. That's when I decided to check my temperature. 102*. Do you know how sucky it is to go from productive and standing to dead and unable to move because everything hurts so much? I took off my layers and sprawled out on the couch. A heating pad on my stomach to help with the nausea and cramping, and an ice pack on my forehead and back of the neck for the fever. I was officially down for the count. What's even more sucky is I can't take anything for the fever because everything I would normally take lowers potassium. So I can only take those things in extreme emergencies, which unfortunately was not last night. I settled in on the couch for some        Gilmore Girls watching. After about an hour I decided to check my temperature again... 103.2*. That's the highest it's ever been. One more ice pack for my lower back. 

      I was cringing in pain from the stomach cramping, Trying to hold the floor in one place because it was spinning so much. And no, I was not drunk. I hadn't even been drinking. And so the story goes. For four more hours at least. Half running to the bathroom to get sick and then crawling back to my place on the couch. Over and over again. Normally if I just lay still everything goes away, if I sleep a little bit my brain resets itself. Not last night. 

     I finally decided to take a xanex. You know the medication that calms down the brain. I took .5mg and crawled back to my spot on the couch. It must have worked. See, conversion disorder is when my brain gets so stressed and worked up that it doesn't know how to handle itself so it just gives up and my psychological stress becomes a physical reaction. The chill pill must've worked like it's supposed to. Because a little less than an hour later I finally passed out asleep. The magic of sleep. 

     I woke up around 4 in the morning to a random thunderstorm. I checked my temp again and it had broken and come back down to 99*. I can live with 99 degrees. I got a cool towel to put back on the back of my neck and crawled into bed. My delightful spot in bed. 

     And that's how my life works. I can taken out by this weird medical anomaly for a few hours and I back to normal the next morning. I have a lingering headache but I think that's just because in the midst of being half dead I didn't eat anything. But I am still alive. This my friends is life. I made it through last night you can make it through today. 

With Love, 

Elizabeth 

*Check out my vlog from last night on youtube. You can click on it here.