I Choose Happy

“Do you not know that your body is a temple of the Holy Spirit within you, whom you have from God, and that you are not your own? For you have been purchased at a price. Therefore, glorify God in your body.”
-1 Corinthians 6:19-20

     I looked in the mirror a few days ago and realized that I didn't feel happy. It wasn't the weight gain, or the steroid caused acne, or even the fact that my hair had gone unwashed and hadn't seen the outside of a hair tie in a while. I just didn't feel like myself. I decided that needed to change. That it was time to feel happy inside my body again. So I made the decision to start being active again, not just on the weekends, and not just when I feel like it. But actually putting forth the effort in doing an hour of something, anything really, a day. For one whole hour.
     I started over the weekend. Going on a spontaneous hike out at Red Rocks. I got lost, about nearly didn't make it back to the car because I was so tired, and kind of accidentally almost starved myself because I forgot the lunch I packed in the car. It was 3.5 miles of hell. Google told me the hike was 2 miles to the waterfall and 2 miles back. But.. it was not. I didn't reach the actual trail head until 1.5miles in. I had to turn around before getting to the waterfall because I knew I was getting close to past my limit and since I was out alone I didn't want to push to much. I was discouraged that I decided to turn around. I felt like a failure because I set out on this adventure and couldn't make it. Once I was back in my car my watch loaded the stats onto my phone. I hiked 3.60 miles in under an hour and a half. That's amazing! I realized there is no reason to feel ashamed about that. I accomplished something big and I was turning that feeling of failure into a feeling of accomplishment.
     Then yesterday, I decided to go out to Exploration Peak. It's trail is just under half a mile but it's almost straight up. If I thought my hike at Red Rock was tough... I would have to stop every 15-20 feet to catch my breath and let my heart rate come back down from the 180s range. As I was taking a break a large group of soccer players started jogging up the mountain passed me. WHO JOGS UP A MOUNTAIN?!
     It's so hard to look at things like people jogging past me or having to turn around and not think "wow Elizabeth this is kind of pathetic." But I have to remember and constantly remind myself that my health isn't where there's is. And for what I've been through and the fact that my POTs is kind of out of control right now and still being able push through and accomplish things is pretty amazing. And I'm proud of what I am able to do. I am going to take advantage of every good and healthy day. I also signed up to be a virtual participant in the POTs Pi Day 5k so I will be doing that March 10th if anyone is interested in walking with me!

With Love,
Elizabeth <3

Learning To Live With The Whispers

"For the spirit God gave us does not make us timid, but gives us power, love and discipline."

-2 Timothy 1:7

     I am still learning to live life differently than everyone else. I'm still learning to live with the stares of people walking by and the whispers of people gathered in the corner watching me closely while I am trying to change my bag of benadryl out to a new one. This involves pushing saline and heprin through my lines and leading a line through my arm hole and down my shirt so it is out of the way. But people just see me drawing up "drugs" and reaching up my shirt. It's not the easiest thing to explain to people. 

     I went to my church's super bowl party this weekend. I was extremely nervous to go because I am still new and don't know a lot of people, and what if I have a reaction to the food, or what if Melvin the IV pump freaks out. But I mustered up the courage and I went for it. Unfortunately right in the middle of it was a scheduled bag change. I walked out in the lobby and found myself a seat on an empty couch and started the process. No one came over and asked me questions but I can hear them whispering close by and their darting glances when I make eye contact with them. It took ten minutes, a little longer than usual because I was distracted. I only have 15 minutes until Justin Timberlake's half time performance and I was NOT about to miss that. 

     I finished priming the tubing and started the infusion threading the tubing through my backpack and connecting it to the line under my shirt (nothing was showing the line reaches to about my belly button). I cleaned up my mess and shut my backpack walking past the staring group. I rejoined the people I knew at our table and swooned over Justin while questioning his wardrobe choice. 

     It's days like these when I realize my life is not normal. My day to day activities aren't what people are used to. I had fun at the party and would go again 100%. I just have to remember MCAS, POTS and Melvin the IV pump are always going to tag along with me. What did you do for Super Bowl Sunday? 

With Love, 

Elizabeth <3 

Off To School And New Adventures

     "Whatever you do work at it with all your heart as working for the Lord not for man" 
-Collossians 3:23

     I started classes this week. I am taking two classes this quarter. Both are fire science classes with one being online and one in person. I went to my first in person class on Tuesday. I am not going to lie, I was extremely nervous. If there was going to be a day my health didn't cooperate, it'd be on a day I had class in a fire station. I am extremely excited to embark on this adventure. Now that I know what is going on inside me and have better control of it I feel more comfortable venturing out. I also figure if something is going to happen I'll be pretty safe in a room full of soon to be firefighters and paramedics. 

     Going to class took a lot of planning. I bought a backpack on Amazon that would fit all my books and Melvin the IV pump. After some modifications (cutting a hole in the side for tubing) the backpack worked out pretty well. And then I had to make sure I had all the emergency supplies (saline & heparin flushes, epi pens, alcohol wipes, green caps, extra batteries, benadryl, and all the other random stuff one would need). Oh how I miss the days where the stressful part of getting ready for class was what to wear. 

     Of course Melvin the IV pump decided to occlude and started beeping incredibly obnoxiously. After a quick dart from class into the hallway I found the kink in the line and fixed it. Melvin was then quiet for the rest of the evening. After class I went to speak with the instructor who was very intrigued. He honestly expected me to walk in with a full on IV pole. So I took Melvin out of my bag and explained how it works and all that jazz. It's always nice getting to educate people and not be judged. 

    One thing I was definitely not expecting with restarting class, was for reality to hit. For years my passion has been in EMS and becoming a paramedic. Now sitting in a room full of people younger than me on their way to paramedic and firefighting I was hit with overwhelming sorrow. The reality that my health has now gotten in the way of my dreams and passion hit me like a ton of bricks. I am mourning the person I used to be. And while I'm excited about the new career goal of 911 dispatching I am still saddened by the fact that I most likely not be able to return to the field. Well, on to new goals and adventures!

With Love,
Elizabeth <3 

Conserving My Spoons

   

"Come to me, all who are weary and burdened, and I will give you rest. Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls."

-Matthew 11:28-29

     There is something called "The Spoon Theory". The spoon theory was written by someone with chronic illness as a sort of metaphor. When you are struggling with a chronic and invisible illness you always look fine and put together. But on the inside you're painfully exhausted from fighting a war inside yourself. Every little thing takes so much energy. The spoon theory helps people who don't have a chronic illness understand what that is like. This is also why you may hear people with chronic illness refer to themselves as a "spoonie".

The Basics:
     The basic outline of the spoon theory is every morning you wake up with a certain amount of "spoons" or energy. On a good day you will wake up well rested with a full bank of spoons. On rough days you may not have gotten much sleep, or are still drained from the previous day, that you wake up with less spoons than usual.
     Then, throughout the day everything you do takes a certain amount of spoons from your original count. Showering may take two spoons on a good day, but four spoons on a bad day. Going to work may take five spoons depending on what you do at work. Hanging out with friends may take spoons also because believe it or not that takes energy too. Everything you do effects the amount of spoons you have.
     Extra spoons usually don't roll over to the next day and if you used to many spoons the day before and you're in the negative, it can take days to regain spoons back.

How I Use The Spoon Theory:
     The spoon theory is a great way to explain the amount of energy each task takes to a "normal" person. I use the spoon theory as a reminder. How am I going to prioritize my energy today? What is most important to get done and what can be put on the back burner for another day? I looked at my planner for this week and almost wanted to cry because there was so much planned. I had to stop and prioritize. With classes starting this week some of my more useless projects had to be put to the side. Calling doctor, going to appointments, self care it all takes so much energy. But you know what... I can do it. I will gather my spoons, hike up my big girl boots and get to work. I'm ready to kick some major spoons butt this week, and every week after.

Ways To Help A Spoonie:
     If someone you love is a spoonie and you see them struggling the best thing you can do for them is ask how you can help. A lot of us will not ask for help, we will not tell you we have been out of spoons for weeks, which is usually why our rooms are a mess, why we eat out so often, why taking naps is scheduled into the day. Ask if you can help fold their laundry, do their dishes, bring them a freezer meal so they don't have to kick. For a spoonie the littlest things can mean the most. Help them prioritize or just be there to listen. Every person is different so the best thing to do is ask. Ask what can help.

Being in a constant battle with your own body is exhausting but rewarding all at the same time. Every time I accomplish something it's like a huge momentous win because I know the amount of time, effort, and energy I put into it. What do you use your spoons for?

With Love,
Elizabeth <3
   

Bringing In 2018

“In his heart a man plans his course, but the Lord determines his steps.” 

-Proverbs 16:9

     I rang in the New Year with a raging party from my hospital room. Okay, so maybe it wasn't a "rager". Okay fine, I fell asleep at 9:30 and woke up to my alarm at 11:55, watched the fire works (I have the best view of the strip by the way) and then promptly fell back asleep at 12:15. Even though I wasn't able to bring in the New Year with shots or party hats I still had a pretty great night. After 19 days, yes you read that right, of only being able to take bird bath showers. I was finally able to disconnect from everything and take an actual shower. It. Was. Magical. Being in the hospital for this long really impacts your mental health no matter how positive you are. Being able to take a shower and put on clean clothes last night really gave me the boost I needed to make it through the next few days. 

     The doctor started the discharge paperwork yesterday. But because there is so much that needs to be coordinated to get me home I don't think I'll be getting out today. I'm think the process will probably start tomorrow and then Wednesday or Thursday will be the big day. I've made it this far so I figured what's a couple more days? I'm allowed to get up and walk by myself which has been fantastic. I've been trying to do 10 laps up and down the hallway every hour. You don't realize how much strength you lose when sitting in a hospital bed for this long. So I'm trying to build everything back up while I'm still in here. All the nurses are jealous of my fancy mask. I've been wearing it when I leave the room because I am not about to catch the flu bug while I'm being held hostage here. 

     I'm so thankful God has brought me this far and I am so unbelievably excited to see what he has in store for this new year! This year I'm choosing to find joy in the journey. What ever life is about to throw at me I'm going to find the positive and take it in stride and I hope you are able to do the same. 

With Love, 

Elizabeth <3 

Celebrating The Victories

     After a rough couple of weeks and being frustrated and tired I wanted to prove to myself I was still able to be "normal". I wanted to go for a hike. The weather is absolutely gorgeous right now so it was the perfect time to go. I asked my adventure buddy who agreed to go hiking with me. And we set out to the Discovery Trail in Red Rock park. The Discovery Trail is a super short trail also known as the "children's trail". It's about 1/4 mile in and a 1/4 mile back and it goes in a nice little loop. It was all shaded by the time we got out there which was perfect! We actually were both pretty chilly during most of the hike. (We're wimps; we know)
     The hike itself wasn't difficult. There were a few spots where you have to go up a rock "staircase" or two. But other than that it was mostly flat and led to where there would have been a waterfall (if we actually got precipitation in Las Vegas). It was super fun climbing around and watching kids do the hike as well. At one point, on our way back to the car, three kids came around the corner and gasped "We heard you and thought you were rattlesnakes!" Yes child; I took hear voices and footsteps and think rattlesnakes. It became a joke and it inspired these fantastic pictures!
      I'm so glad I conquered this hike! My heart had a hard time cooperating with my heart rate in the 190's most of the time; but I didn't pass out! Which is always a huge accomplishment! Even better my PICC line stayed nice and clean which is always a concern of mine. I'm so thankful to have friends like my Adventure Buddy to accompany me on adventures like this. Even if they are just short little excursions!
     Always remember to celebrate the victories no matter how small they may seem to most people. It may be the biggest thing you've ever accomplished, and that, should always be celebrated! "Let the heavens rejoice, let the earth be glad; let the sea resound and all that is in it. Let the fields be jubilant, and everything in them; let all the trees of the forest sing for joy." Psalm 96:1-2

With Love,
Elizabeth <3

A New Era Of Hair

     A few months ago I started losing excessive amounts of hair. At first it wasn't bad just more hair was coming out when I would shower. Then it started picking up more where there would be clumps that would fall out when I was brushing my hair. Now, it falls out whenever the heck it wants. I'll be walking around my room and see a random pile of hair on the ground. I try to wear it up in a ponytail all the time so at least the hair doesn't just jump out in public, because it's already gross enough as it is. And now that my POTS is flaring up again quite a bit I pass out quite often when I brush my hair. My heart rate jumps so high while brushing my hair that my watch actually thinks I've just completed five minutes of super intense arobic workout.
     I had had enough. I made a hair appointment to cut quite a bit off. I also wanted to get back to blonde. So that as my hair grows out my natural blonde color my roots don't look completely wonky. So Tony the hair guy helped me out. We cut about six inches off even though it doesn't look like it. He noticed the hair loss too but was nice enough not to draw to much attention to it. I'm so happy with the results! He did an amazing job and I couldn't thank him enough! So here it is without further adu:

With Love,
Elizabeth <3

I'm Just Done Fighting

   

     It's been a minute friends. I have tried to sit down and write several posts but there were just none I was passionate about enough to finish. I'm a bag of mixed emotions right now, and for good reason. I had two wonderful weeks of no issues. There was the occasional ocular migraine, or upset stomach after eating but I went two whole weeks without a hospital admission, without having to use an epi pen, without being stuck at home. And they were a great two weeks, probably one of the best few weeks I've had in over a year. I want to go back to those two weeks.
     Last Sunday I went to church and then went to Subway right after. Subway has always been a safe food for me. I get the same thing every time and never have any issues with it. A few bites in my throat started to feel scratchy and my whole body got hot and itchy. I remember trying to take benadryl but must have slipped into unconsciousness because I came to in the ambulance with the medics trying to start an IV and a needle being stabbed into my arm with more benadryl. They had already given me epi in the shoulder and my oxygen levels came up slowly. It's never a good thing when the fire crew (who has never ran on you) knows who you are because other crews talk about you at the station. They knew not to give me anything else until I woke up and could tell them what I can and cannot have. My body cooperated the rest of the ride. In the ER I had another reaction and another the ER doc said "it's not possible to have that many rebounds" I know better. I've experienced the truth of multiple anaphylactic reactions one right after another. They decided to admit me. The attending physician came downstairs and told me there was nothing else they could do for me.. There is they just refuse to consult my specialist. I decided to be discharged that night because there was nothing beneficial for me there if my doctor wasn't willing to actually help me.
     The very next day I started feeling short of breath and it got extremely hard to swallow. I hadn't eaten anything that day so I don't know what could have possibly triggered it, but either way it was happening. I was home alone so I tried to call my mom my phone must not have been working because I tried to call her and my dad and all I got was "Verizon can't complete your call please try again later" so I pushed the "help" button on our GPS app. I don't know what happened after that. I don't know how 911 was called, because it sure wasn't me, but they were. They arrived and I was face first on the floor. Yes, I was at least breathing more than 3 times a minute this time. They loaded me in to the ambulance. A few minutes later the medic looked at me and said "this isn't anxiety is it?" I nodded my head no. He looked at my oxygen level which was now dipping into the 70's. He gave me a round of epi in the shoulder and 50mg of benadryl through my PICC line. I was struggling to breathe my breathing became so labored that I was starting to zone out. He started bagging me, which is basically him breathing for me, and they turned on the lights and sirens. When I got to the ER they immediately decided to admit me.
      9 hours later I was still in the ER, they told me it would be 34 hours before they could get me a bed upstairs. I gave up. I had nothing left to give. I was extremely itchy since the first benadryl wore off so I asked for more. My entire body was red and splotchy and there were hives on my chest. The nurse said she'd be right back with some and I didn't see her for another hour and a half. I decided to sign AMA, against medical advice, and have a friend drive me home. My mind was, and still kind of is, in a dark place. There are still people out there who thinks this is just anxiety or that I'm doing this for attention. That there is no way a 21 year old could be this sick. I can tell you every time I go into anaphylaxis I have to make the decision of staying and fighting or closing my eyes and letting the darkness consume me. I honestly think that's why I've been found unconscious so many times this week. Is I've given up the fight. I don't run to my epi anymore, if I get to it I get to it. I don't stay at home where it's safe anymore and I certainly don't wear my mask outside like I should. I've stopped fighting. I hate saying that out loud but it's true.
     I had a doctor's appointment yesterday to go over lab work. I came back positive for the gene mutation that has been found to cause MCAS, and one of my prostoglandin reports came back 4x over the normal limit. The specialist my doctor was consulting in New York says it's time to switch treatment options. Neither of which I'm thrilled about but one option has an incredible success rate in decreasing anaphylactic reactions from multiple times a week to once every few months. But it's still a newer treatment option in the medical world and all of my doctors are pretty nervous to start it. My take on it is there's no way this option could make anything any worse. Why not just try it? I want nothing more than to go back to school right now. Not even work, I just want to go back to school. Where I can meet other people my own age but I can't right now. I have a dismal quality of life right now. Wouldn't we want to try everything we can to fix that? To make it so I'm not in the hospital multiple times a week? I'm just so frustrated. Doctors are giving up on me, friends are giving up on me, I'm giving up on me.
     So I'm praying for strength and peace. Because no matter how tired I am or frustrated I am God's got it all planned out. He'll put me in the right hands and he'll get this figured out. "Tell everyone who is discouraged, be strong and don't be afraid! God is coming to your rescue." -Isaiah 35:4

With Love,
Elizabeth <3

Off To Nebraska

Friends,

     I'm not going to lie. Ever since moving back home to Vegas I have had trouble understanding why God chose me for all of this. I had made an awesome life for myself back in Nebraska, I had made great friends, had a job that I loved, but I was just to sick all of the time to really enjoy all of those things. Then, the second I moved back to Vegas, I started to feel better. I finally found doctors who understood and they've helped me find treatments that are really working. Why couldn't that have happened in Lincoln? Over the last few weeks I've started missing my Nebraska family even more. So I planned a semi last minute trip. My allergist thought this was an awesome idea. He's very concerned that this sudden uptick in my health is temporary. Although we're both praying this is the beginning of remission there's just no way of knowing. So he thought now, while I'm responding to treatment and am stable enough to travel, I should go. 

     I couldn't contain my excitement in the weeks prior. My doctor decided that since I don't have an immune system at all I needed to wear a mask on the plane as well as to block out any scents that could trigger a reaction. We put together my Emergency Room protocols and Reaction Treatment Protocols. I was able to put them into a packet to carry with me so should something happen all my emergency protocols and information was all in one place. I'm not a fan of traveling with my mask on. It tends to draw unnecessary attention, people think I'm the one sick and passing out germs. I am sick but other people's germs are more dangerous to me than I am to them. But there is one perk. A mask scares people off. So there's many times you'll get the whole row to yourself because well.. everyone is scared to sit next to you. Sometimes you just have to find the bright side. 

     Finally I was off! I packed a backpack full of Elizabeth friendly snacks so I didn't have to worry about something I could safely eat at any of my connecting airports. I arrived in Denver with no problems. I was proud of myself for making it that far! I was doing it guys! My flight into Omaha was slightly delayed so I did have time to find food in Denver and an empty area to take my mask off and eat which was nice. I was in the air when it was time to take my night time meds. It was challenging because I did have so many to take. I also got some interesting looks when I did my night inhaler. But everyone got over themselves and there were no real problems. We hit some crazy turbulence and being jostled around made my stomach turn but thankfully that was it. The pressure change of taking off and landing didn't cause a reaction and I am soo grateful! I had finally, at 11:00pm made it to Omaha. 

    Saturday, one of my best friends and I made our way into Lincoln. We decided to get in on the Husker Game Day hype and walk around downtown and by the stadium. So. Much. Fun. I used to work first aid at all of the Husker Games so I would be at every single one. But there's something about participating in it that is so exciting. We ate lunch downtown and went to my favorite ice cream place ever. Then we treked another mile over to the stadium. We watched the marching band perform as well as the football players and coaches arrive. I've seen it from far away before, but being right in the middle of all the game day hustle.. there's nothing like it. I was able to say hey to some of the people I used to work with at the game which was nice. Right about when the game was supposed to start we headed back to our car. We walked at least eight miles during all of this. I was so impressed with both of us! I didn't pass out or have any reactions and we walked in the heat so much. My feet did hurt but that wasn't a huge deal. Erin's heels were bloody from a poor choice in footwear but we survived!  
     Sunday was state fair day! I love the state fair! We never get to go to the fair in Nevada.. mostly because no one actually knows where it's located. This is my third year going to the Nebraska State Fair and it just keeps getting more fun every year. We were able to watch the Firefighter Challenge. Which is where fire departments all across the state compete against each other. It was super cool to watch. Then we met up with Katie! She was there to watch her ag students show their animals in contests. I can't say I have ever watched pig shows before. But it was pretty interesting to watch. But in between pig shows I was able to eat all the fair food! Well... by fair food I mean three bags of cotton candy and the best prime rib sandwich. We visited all of the exhibitors that gave out free food, shot archery, and learned about agriculture. Well, I learned about agriculture because ya' know I'm a city girl who knows literally nothing on how corn is made. But the best part is we finished out the night with a Cole Swindell concert!
     The rest of the trip was super relaxing. I hung out with Katie in Wahoo for a few days. And then back into Lincoln to hang out with more old work partner and her family. I played play dough and tickle fights with a two year old who still couldn't entirely say my name but he and his brother are pretty darn cute!
      On Thursday, I flew home to Vegas. It was a long travel day. My first flight to Phoenix was delayed by 45 minutes which was fine but inconvenient. When I finally made it to Phoenix I had to walk from one side of the airport all the way to the other side. They do have the moving walkways but just standing on those were making me dizzy. I finally found a nice guy driving a golf cart and asked him for a ride. He was super nice about it and drove me all the way to my gate! Where I sat. Until of course a lightning storm blew into Las Vegas and they shut the airport down. We weren't able to take off and our plane was delayed for an hour at first. Then the lightning cleared in Vegas, but of course a dust storm started rolling into the Phoenix area and we weren't allowed to take off, so now we were delayed another hour. Finally at 7:25 we were able to take off.
     It was the best vacation I could have asked for. I really needed it. I really needed to see all the people I love and miss so much. My Nebraska family has a huge place in my heart and they will never know how much they mean to me! Thank you guys for giving me the strength and love and encouragement from far away. I love you all and can't wait to see you next time!!

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

Beautiful Weight

     I know you think that your words are helpful or encouraging or even just funny. But they're not. They actually hurt a lot. When I was put on prednisone for the first time I had no idea the kind of terrible awful impact that drug would have on my life. And yet, it's one of the many medications I take daily to help keep me alive. I've tried backing off of it and trying something else but my body is relying on that steroid daily to keep me from slipping into anaphylaxis. So I stay on it, because right now that's my only option.
     Prednisone is notorious for causing weight gain. You haven't had carb cravings from a steroid until it's 2am, you're half asleep wondering where you moved the bread to so that you can make a grilled cheese sandwich. I hate prednisone. Trust me, I hate gaining weight. I hate that this medication makes me gain weight. I'm trying everything I can to lose weight and curb future weight gain from this devil drug. But with conditions I can't work out like everyone else. I can only go for walks. I can't lift weights because I'll become fatigued and dizzy and pass out. I can't go for runs because my heart rate can't control itself and I'll end up with an irregular heartbeat and in the ER. I try to limit my intake but I'm on such a high sodium diet that my foods are by nature going to be of the unhealthy kind. I would love to not eat Ramen for breakfast anymore but right now that's my best option.
     So when I'm eating a snack, you saying "ugh you know that'll go straight to your hips" isn't funny at all. I know you laugh after saying it but I don't. I go home and try not to cry because I know I don't look my absolute best right now. I also know it'll be months.. maybe years until I can get back to a "normal" weight again. And what happens when I'm on this medication long term? When these six months turn into a year or two years? Now I have to think about what you think about my weight for another couple of years.
     I know you are trying to be kind when you offer to workout with me. Because you think that you can motivate me to push past my limits. But my limits are there for a reason. I used to be able to lift weights and run and sure, I may still be able to do that today but that will reek absolute havoc on my body. And the last thing I want to do is hold you back from your workout goals because I can't stand up anymore because I tried pushing past my limits.
     But my absolute comment is "man Elizabeth, it looks like you've lost weight this week." I haven't trust me. I've been standing on the scale every night hoping that maybe that would be true and it's not. I know you're trying to be encouraging but that comment isn't encouraging at all. Especially when once again I find myself on the scale hoping that something has changed. And then looking down and realizing either nothing has changed or I've gained more weight.
     I have a positive body image about myself.. Well, as positive as it can be. I know that I am beautifully and wonderfully made. But lately all of these comments about my weight have started to turn that positivity into negativity. So, I'm asking you kindly. Please stop mentioning my weight. Please keep your helpful and not so helpful comments about my weight to yourself. Because I'm over here trying to live my best life with or without all of my extra beautiful weight brought on by something that's helping to keep me ALIVE.

With Love,
Elizabeth <3

I'm Trying

    I am trying my hardest to be happy in my life right now. I am trying to be excited about this new chapter in my life and all of the new adventures ahead of me but it's been extremely difficult. I broke down this morning because I miss my church in Nebraska. I had made such a great life for me in Nebraska but all of a sudden I've been uprooted and having to figure everything out all over again. But I'm trying. So here's what's been going on the last few weeks while trying to get my life back together.

Beach Weekend!
     The family and I took a weekend trip to the beach in California. It was hard because my POTs was acting up. I adventured around California with my camelbak backpack filled with water and tried to stay as hydrated as possible. I'm trying to not let my illnesses get in my way. I'm finding ways to adapt to them and to try to be as normal as possible. But even after all of my adapting by the end of the weekend I was exhausted both mentally and physically. But even though I was flushed and dizzy most of the weekend I did have a good time. I got to walk along the beach and racked up about 5 miles of walking throughout the weekend which is amazing for me! I also tried boogie boarding, which didn't work out to well because I got slammed against the rocks and pushed under the waves, and then admitted defeat to the ocean and just watched from a distance.

First Hospital Visit in Las Vegas!
     Tuesday morning I was hope alone, except for the AC guys who were up in the attic. I don't know what happened. I was completely fine one minute and then the next minute I was a gonner. I always call the fire department when I have a reaction because it can go from bad to extremely bad really quickly. I called. They were having a hard time finding me. In Nebraska you were able to go online and fill out a form that would be kept in the dispatch system. My form basically said if they received a call from my number and no answer to automatically send help and my address for when I am unable to speak. But here in Vegas we don't have that system so they were having a difficult time finding me. The dispatcher asked if I was able to make it outside. I could but not all the way out to the street. The fire truck couldn't see me from where I was sitting so they kept driving. They were finally able to find me and took me to the hospital. My mom met me there and was able, for the first time, to see the reality of my mast cell activation disorder. They were able to give me my usual steroid, nebulizer treatments, and benadryl to help calm my reactions. Only after my two rounds of epi.

Another Ear Infection!
     Shortly after getting back from the beach I started getting extremely feverish. Like I would be running a fever of 103 and could not get it to break no matter how hard I tried. At first I thought it was just my body getting used to a change in my blood pressure medication dosage but one morning I woke up with extreme pain in my left ear. I was crying it hurt so bad. My friend drove me to Urgent Care where I have never been so humiliated by a "doctor". I'm used to medical professionals not believing me because my illnesses are invisible. And as frustrating as that is, I understand it. But this doctor completely dismissed the fact that I came in with a high fever, irregular heart rate, and extreme ear pain. She told me to stop being a drug seeker and was trying to discharge me without even looking at my ear! I finally talked her into just looking in my ear. And even after confirming that I did have a major ear infection she still wouldn't give me an antibiotic! Claiming that I was only trying to get add another medication to my list... Why? Why would I want to add ANOTHER medication to my list? Why would I want go through another set of side effects and take another pill if I really didn't have to. I needed the antibiotic to get better from the ear infection. After having to fight for the care I needed she finally wrote me a scrip for Z-packs and she had me escorted out of urgent care by security. I won't be going back to their facility anymore.

...Yet Another Allergic Reaction!
     On Friday, we had a family dinner. My parents were out of town camping but the rest of my family was there. I had yet another reaction. I couldn't immediately peg what caused it but I started to get extremely nauseous. I walked back over to my apartment and got sick shortly after getting home. I took two Benadryl and sat down on the floor to wait for them to kick in and make the nausea go away. (Gosh, I can't wait until I can get IM benadryl that will work faster.) The anaphylaxis hit again, fast, like always. I called my mom because that's what our deal was. My dad answered her phone and stayed on the phone with me until my Grandma and my uncle were able to come sit with me. By the time they got over to me I had already administered epi. They didn't understand why even though I was doing better I needed to go to the hospital. But my protocol is as soon as there is airway involvement I have to give epi, and if I give epi I have to go to the ER. My grandpa was kind enough to drive me to the ER and sit in the waiting room while I got checked out. I was taken back and was stable for a while. While sitting and waiting for the doctor I had a secondary rebound. The nurse came to check on me because she could hear me breathing... She hooked me up to the heart and O2 monitor, and umm well it wasn't good. I was sitting at 78% which is not great. The doctor came in and ordered benadryl IV, pepcid, and a steroid I had never gotten before. The nurse pushed the steroid first and all of a sudden it felt like my whole body was on fire. All I could do is scream and try to breathe. It burned so so bad. The nurse quickly pushed the benadryl and sat with me until the burning sensation dulled a bit. They moved me to a room right across from the nurses station so they could keep a constant eye on me. Which always makes me feel more at ease. They gave me IV normal saline and a neb treatment and then ended up releasing me later that night. After all of that we realized that the reaction was indeed caused by the antibiotics the cooky doctor from the night before put me on. The ER doc prescribed a new one before I left which was nice.

Keeping On!
     Even though the past few weeks have been a complete roller coaster that I feel like I can't get off of. A roller coaster that I don't want to be on I'm still trying to keep my spirits up. My new roommate and I met my parents up in the mountains and went for a short hike. I'm still trying to keep my hopes up and not let all of this medical jargon get the best of me. I'm trying and I think I'm doing a pretty good job at trying. I will keep my hope in Christ. Because I know he has a plan for me. Let's keep trying friends! Let's not lose hope. Because one day, it'll get better.

With Love,
Elizabeth <3

Fuel The Fight

    Hello friends! It's been a week. I have moved back across the country to Las Vegas and I have officially been here a full two days. And man they have been a full two days. I'm still extremely overwhelmed, like mental breakdown at 4pm because I can't find my favorite pajama shorts amist all the half open boxes. But before I get to that mental breakdown lets start at the very beginning... Getting to Vegas.
     I left Nebraska around 8am and my parents didn't leave until around noon. We were planning on stopping in a town about 4 hours west of Colorado. I was about an hour out and just getting past the mountain when it hit. It started with the itchy chest and the feeling of fire ants in the back of my throat. I managed to choke back two benardryl and some water. I thought maybe this would just be a small reaction so I kept driving. About ten minutes later it was full force. I pulled over on the side of the interstate (which scared me more than the actual interstate part) and called 911. I always call when I'm alone and have to use an epi pen in case it doesn't help or it gets worse. Than at least I know help is on the way. The only part was I was now in a canyon with not a whole lot of cell service. It took about three minutes longer to get them dispatched to me because they just couldn't find me they also couldn't hear what I was saying because of the poor service. They finally found me. I was one epi in and about to hit myself with a second one. When the fire department got there my O2 was in the 80's range. They took me to the back of the ambulance and gave me a neb treatment. My breathing did a 180 and started improving. I decided not to go to the hospital by ambulance. They followed me to the next exit to make sure I was okay and then I stopped at a gas station to take a break. I was able to make it to my destination in one piece although I was two hours later than expected. That's the reality of this one minute I'm having anaphylaxis and the next minute I'm fine. It's frustrating and scary.
      The thing is, I'm using that fear to fuel me. To fuel my fight. I'm trying to push my boundaries and I'm paying for that every minute. While in Colorado I went for a hike to Hanging Lake which is a mile and a half hike straight up. It kicked my butt. And it took a lot of effort and a lot of stopping and taking a break before I finally made it. And that climb, and the view at the top was worth it. I'm taking one step at a time. Moving home has been daunting. I loved my independence and being far from home. I feel like even though I'm still technically living on my own just near my parents, I'm still under a microscope. It's a huge adjustment coming back. But I know it's what's right right now. I've been going from one doctor to another.
      Since I've been home, even though it's only been two days, I've already had an allergist appointment with my favorite allergist. One that doesn't say it's all in my head and that I'm holding my breath to lower my oxygen levels. He's so helpful! We talked today about what our next step is after my two month prednisone taper is done in three weeks. We talked about two options the first one is cromolyn sodium and the second one is a Xolair shot. He told me to go home and research them both and to come back in a month and we'd discuss it further. He cares about my opinion. He is thinking the cromolyn sodium is the best option for me right now, but it comes with GI side effects. And since I'm already having some GI symptoms he wants approval from a gastroantorolgist before he puts me on it. I haven't had a chance to set up that appointment yet, but hopefully I can get into one relatively quickly.
     During the appointment my POTS got the best of me and my blood pressure tanked when I stood up. The doctor was still in the room at the time when I collapsed. I didn't pass out which is always a good thing. I just got really weak and my legs apparently decided they no longer wanted to support the rest of me. They took my blood pressure while I was still sitting on the floor and it was around 92/68 I think. We know that abuterol has an adverse affect on my blood pressure. For normal people albuterol lowers the blood pressure, it tends to raise mine. The doctor gave me a breathing treatment and we were able to get my bp back up to around 110/74ish. He had me drink two bottles of water before he would let me drive home. He wanted me to go to the ER and get fluids but we decided that it wasn't necessary yet. I went home and ate ramen for the sodium and drank 64 more ounces of water before I let myself take a nap. I was exhausted. That hour doctor appointment wiped me. My fear is fueling this fight. This never ending exhausting fight. "Be strong and take heart, all you who hope in the Lord." Psalm 31:24  Keep strong friends!
With Love,
Elizabeth <3

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