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

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 

Meet Melvin 3.0

"Jesus Christ is the same yesterday and today and forever."
-Hebrews 13:8

     While on my vacation this past weekend my IV Pump (Melvin) decided to get a little weird. It would start beeping with an error code of "Error: Stuck 7 key" and wouldn't do anything unless I turned it off and then back on again. The 7 key was never stuck but this happened two times over the weekend. And then during class on Tuesday night it did it again. Except just turning it off and back on again didn't help. I had to take the batteries out while it was still running put them back in and then turn it off and back on again. This process happened twice during class. 

     That night I called the 24 hour Coram assist line. They connected me to the on call nurse who tried to walk me through troubleshooting it. Unfortunately, we pushed one to many wrong buttons and Melvin decided to just flat out quit. So the Coram angels got to work. They programmed a brand new pump and sent it out to me two hours later. At 9:30pm I made the switch, said goodbye to Melvin 2.0 and said hello to Melvin 3.0. 

     So far so good. I was able to connect to the new pump and restart my infusion without missing a beat. The courier took my old IV Pump back to the Coram pharmacy for me. I was extremely impressed on how quick they were able to help me fix the problem! Hopefully this new pump will last a little longer than the old one. 

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 

PICC Line Malfunctions

*Just a warning some of the pictures in the post will be somewhat nasty*

"The Lord delights in those who fear him, who put their hope in our unfailing love."

-Psalm 147:11

     I have a PICC Line. It is basically an IV that is inserted into my upper arm and is semi permanent. Because I have to have 24/7 access the PICC line was a great option for me. Last week during my dressing changed we realized I had started developing a reaction to the dressing, or tape we put over the line. My skin began blistering and draining, in all honesty it was miserable and gross. We were watching it closely for signs of infection but I never showed any. I never had a fever, my arm never swelled, the site never turned red it was just irritated. Well Saturday morning I looked at my site and it was super gross and nasty. This line leads straight into my heart. I was not about to take any chances on infection so I decided it would be best to take a quick trip to the ER. I should have known trips to the ER are never quick for me. 

That's what a blood clot looks like.
Terrible picture I know, but still
kinda cool.

     The triage nurse was extremely rude saying I was over reacting and it was probably just a skin allergy that was causing the drainage. I reminded her again that this line went straight into my heart and I wasn't willing to risk anything. She rolled her eyes and told me that I looked fine and they would probably send me home in a few minutes. I told her that would be fine if that is what the doctor decides is best. She also said that I should stop seeking attention by wearing a mask. I am immune compromised, I have ZERO immune system and I was not about to hang out in a hospital full of snotty flu humans without some sort of protection. Again, she rolled her eyes. 

     The nurse who has seen me before came and moved me from triage back to a room. The PA came in and looked at my line. She said it didn't look infected but she's also never seen a site with that much drainage. So she called over the ER Doc. I was worried because he's a new one I've never seen before. He took two seconds to look at it and said "something is definitely not right." He ordered several labs, cultures and lots of imaging. 

     First up was an ultra sound of my line. There was a student so it took quite a long time. We were chatting and then she went quiet and pointed to something on the screen. The actual ultra sound tech came over and typed something and then I was taken back to my room. That's when I knew something was wrong. The nurse came in to start a second IV he told me we were going to have to pull this PICC line which was fine with me at the time. They could find a vein to get a second IV they dug, I cussed, we all gave up. 

    The doc finally came in and told me it's confirmed two major blood clots. One was inside the line and wasn't occluding much, but the second was around the outside of the line so very little blood flow was getting past the clot which means the line had to go. Pretty immediately. The international radiologist came in to place a new PICC. He was the one that placed my very first one. He's the bestest. He pulled my old one and went to place the new one. They use an ultra sound to find the vein they are going to put it in. And even with ultra sound he could barely find the veins. That's when my once favorite IR Tech became my least favorite. He told me we had to place the new line WITHOUT lidocaine. He did it super fast but not without me cussing... a lot... like a lot a lot. 

     I was then started on a very high dose antibiotic Vancomyacin. It's biggest side effect was Red Man's Syndrome. Awful. That was over after an hour and we started a second one just to be sure. I was discharged later that night with an oral antibiotic and a very very sore arm. Thankfully I got news that my cultures had all come back negative which means the infection never reached my blood stream! 

     So that was my weekend. It was rough but I made it. 

With Love, 

Elizabeth <3 

Learning To Be Active Again

"For the moment all discipline seems painful rather than pleasant, but later it reveals the peaceful fruit of righteousness to those who have trained by it."

-Hebrews 12:11

     I am trying to get into the habit of being active again. Not working out, but active. The difference between working out and being active is I am soley trying to get off the couch. I have no outcome goals of losing weight or gaining muscle. I merely just want to move as much as I can. And to say that has been an uphill battle is an understatement. 

     One thing with my Postural Orthostatic Tachycardia Syndrome is that deconditioning makes my symptoms worse. My body literally forgets how to push blood to my brain when I am moving. The more often I move the less my body forgets and the easier it is to do everyday things. When I lay for a month in a hospital bed my body forgets all of that and when I start to move and do life again my autonomic nervous system goes absolute haywire. 

Yep, this is why laundry day
is my least favorite day. 

     One thing I do to be active is go for walks. Small walks, half a mile at most. My heart can barely tolerate that. Some family and I have been walking around the park every once and a while. We also went to look at model homes, which ended up being a bit more of a workout that I anticipated. Damn these three story houses in Vegas. I also walked to my aunt's house for breakfast and back. It's simple yes, but my body is starting to thank me. 

     I have no real plans to begin hard core working out again. Just looking at my heart rate from the little things I already do makes me want to never ever workout again. But I know I'll work my way up to that. It'll take a bit, but I'll get there. I'll slowl

y start to push the limits and work my way up to weight lifting and being buff (JK that's never been the case) again.

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
   

Continuous Benadryl Infusion

"But those who hope in the Lord will renew their strength. They will soar on wings like eagles, they will run and not grow weary, they will walk and not be faint."

-Isaiah 40:31

     I've officially been home for three days! I am still so exhausted and sore. Turns out when you start actually doing things after a month of doing nothing your body tends to be pretty mad at you. So I've had to take lots of naps. I am so happy to report that the continuous benadryl infusion is still working so well! I'm still learning how to live with tubing attached to me 24/7 but I'm adjusting. One of the biggest things I forget is that I'm now attached to my purse so I can't just throw it on my couch when I get home and walk away... I've tried it doesn't go well. Anyways; a lot of people have been asking how it works and what it looks like. So I figured I would try to explain it here! 

     

Once a week I get a delivery from my home health company. It's a big box with 7 bags of saline with benadryl mixed in. I receive 11mg of benadryl over the course of an hour. It doesn't make me sleepy because I am getting such a low dose over an extended period of time. If anything I've noticed I have a little bit more energy because the medication is actually doing it's job and calming my mast cells down enough that my biggest symptom of fatigue and brain fog has actually lessened. Also in the box is 7 days worth of IV tubing, the supplies to change my dressing on my PICC line, batteries, and a few other misc. things.

     Every night around 6:00 I have to change the benadryl bag. It takes about ten minutes start to finish. This involves "spiking the bag". The IV tubing has a pointy end that I insert into the benadryl bag. Then I run the tubing through the pump and prime the tubing. This runs the medication through the tubing to get rid of all the air. Finally I hook it up to my PICC line. I run the tubing up my arm and through my shirt. The pump is programmed at my home health pharmacy and then locked so I can't change the dosing at all. I can only turn it on and press run. 

   

  The biggest issue I've ran into so far is because I am running the pump 24/7 I am having to change the batteries twice a day. Usually once around noon and once around midnight. Changing the batteries takes maybe three minutes but I am having to remember to put replacement batteries in my purse in case I'm out and about. I surprisingly haven't had it been because of a kink in the line at all. I was expecting it to happen quite a bit because I do have the tubing going under my shirt.Although it has, and will be, an adjustment I'm still so thankful to finally have found something that seems to be working. I am currently on the low end of dosing so I can go up on dosing if needed but I haven't had to do that yet. The goal is to be on the benadryl for about three months. This will give my body time to stabilize. We will also be trying the xolair shots again and hopefully the benadryl will give the xolair time to build up and start working and we can back off of the benadryl. If you have any questions about the CDI or ambulatory infusions let me know! I'm no expert but I'm learning. 

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

The Silent Reactions

     So by now most of my friends and family have come to terms with my mast cell diagnosis. If you haven't heard of it, it's where my mast cells can't control themselves and constantly release far to much histamine into my body. My body is basically in a constant allergic reaction. When most people think of my allergic reactions they think about anaphylaxis. Unfortunately; with this current flare that's a daily thing. You can hear my breathing from down the hall, I turn extremely flush, my body feels like it's on fire and itchy all over the place. I don't joke around when I say I can feel my airway tightening. These are the scary reactions. These are the reactions everyone is on high alert for, they are life threatening and hit me quick often with very little warning. But these anaphylactic reactions are only half of my battle. In between those are smaller reactions.. the internal ones. They are the reactions I can fake a smile through and pretend like my body isn't revolting against itself. There's a fix for anaphylaxis, it's not a fan fix by any means, but a breathing treatment and epinephrine will fix anaphylaxis. There isn't usually a fix for the silent reactions; just time. I want to shed some light on my silent battles. So without further adu; here is what's going on inside my body. 

  I accidentally ate some sausage that was cross contaminated with cinnamon french toast. Thankfully I noticed after just a few bites that something was off and immediately stopped eating it. We were able to give IV benadryl quickly which put a stop to the breathing issues before they really ramped up (although they were coming). But unfortunately; benadryl didn't help the extreme abdominal cramping that came the following hours. I have a pretty high pain tolerance but these cramps had me in tears. It felt like there was someone taking my stomach and trying their very best to rip it in half. All I could do was curl up in the tightest little ball with a cozy blanket and wait. I think it was somewhere around hour two the tearing pain finally let up and I was able to move again. 

     On this particular sunny day I decided it would be a delightful idea to take three kids to a park. It was a great idea, they had tons of fun and were able to run off all of their tiny human energy. It was really hot that day but that didn't stop us. We piled in the car illprepared with only two water bottles for four people and we took off. It really wasn't that bad, we refilled the water bottles as needed and the heat didn't stop the kids. But the pollen.... oh the pollen. I didn't look at the pollen count that morning like I usually do. I didn't take extra benadryl before we left to make sure that I was prepared for the pollen. I sat under the trees in the shade while those kids ran their little hearts out praying that my splitting headache would go away. The pollen had given me a complete and total migraine. My headache was easily an 7.5 on the pain scale. I could see the black floaty dots I see with migraines and I was incredibly nauseous. I tried taking a rescue benadryl while we were there to see if maybe that would help... but it was to late. Once a migraine of that magnitude sets in you just have to ride it out. Thankfully; the trip to the park was relatively short lived as it was really hot. We were able to go get slurpees and I was able to go take a nap and let my head recover. 

     

 The itchies. These have got to be my least favorite of all of my internal/silent reactions. This one is mostly triggered by perfumes and scented things like those damn cinnamon pinecones that are everywhere right now. But I digress. I am extremely sensitive to smells. They usually don't trigger a full blown anaphylactic reaction but they do make my whole face itch. Especially my nose. I have walked passed people on several occasions and for hours after my nose will itch. There is no amount of benadryl and nasal spray concoction that will get rid of the itchiness either. The itchy feeling is usually pretty contained to my nose but occasionally I will get the feeling that goes down the back of my throat. I have to be really careful when I start to get the itchy feeling in the back of my throat as that's usually the first sign I have of an impending anaphylactic reaction. Just like the rest of my smaller reactions I have to let this one run its course. I do my best at not scratching my nose but I usually end up looking like Rudolph before long because I've been itching my nose so much. 

     The last internal reaction I usually get is nausea. I don't usually get sick with this one just the feeling of being eternally stuck on a ship that will never find calm waters again. I've never been sea sick... I've never really been on a sea either, but my nausea reactions are what I imagine sea sickness to be like. My legs are extremely wobelly. I don't trust myself to stand when this is at it's worst. The room might spin just enough to make me want to get sick and my stomach twists into a million knots. I usually try to tell myself "if I just eat a few crackers it will settle my stomach..." it won't, but I try anyways. I usually can't find a trigger to this one. It doesn't come after eating and it doesn't stay much longer than 45 minutes to an hour maybe. But that hour laying on the floor trying to keep everything down is miserable. 

     Well, there you have it. Having an invisible illness is hard. I want to tell people what's going on inside my body so that you understand I'm struggling. I'm not canceling plans because I don't want to hang out with you, I'm not trying to be recluse and lay in bed all day. It's just sometimes I can look so normal and healthy but on the inside my body is literally trying it's very best to ruin my life. I would take any one of these reactions over anaphylaxis because they aren't life and death.. their treatment isn't time sensitive. But that doesn't mean they don't suck. If I had a choice I would choose no reactions ever. But that's just not the case. So for now, until my mast cells can get their shit together I'm stuck with this. I'm going to smile through every silent reaction and I'm going to fight through every episode of anaphylaxis because why live life if you're not going to do it smiling? 

"Be joyful in hope, patient in affliction, faithful in prayer." -Romans 12:12

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 

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

I Know It Doesn't Look Like It....

   
      I know it didn't look like it when I first walked into your 24 hour urgent care clinic, but I was struggling to stay standing.
      I know it didn't look like it when your nurse first came out to greet me and brought me back to take my vitals but every step I was taking felt like another brick was being stacked on top of my chest.
      I know it didn't look like it when you first came in to the exam room but I was trying to keep my eyes open even though the world was spinning faster than I could handle.
      I know it doesn't look like it, but I am struggling. I wouldn't have come here if I wasn't. I wouldn't have come here asking you to stick another needle in my arm and give me yet another bag of fluids. Hoping... praying that this bag of fluids would help me get on top of my symptoms for at least the next couple of days.
     I know it doesn't look like it but I'm at the end of my rope. I've had enough of this and I'm about ready to give up, to throw in the towel and quit fighting.
     I know it doesn't look like I trust in your abilities to understand what I'm going through or that I actually need help. But I do. I just need you to prove to me that you're willing to understand.

     "I know it doesn't look like it..." is how I've started every doctor's appointment recently and it's how I started my last minute trip to urgent care tonight for fluids because the dizziness and weakness has gotten to the point I can no longer handle it. I get it. I look normal, I look like your healthy 21 year old who has nothing wrong with her. But that's why they call it an invisible illness. My POTS got so bad today that there were multiple times I fell to the floor and just decided that trying to get back up wasn't even worth the fight. My heart rate had been so high all day that by 3pm I felt like I had ran a marathon and didn't want to do anything anymore. I was frustrated and fed up that I took myself to the 24 hour urgent care to see if there was anything they could do to help. When they first took my vitals they got a BP of 156/122. I asked if they could retake it because I knew it wasn't right. They rolled their eyes but did retake it. That time my bp was 104/78. My heart rate was 110. Neither of those were considered emergent but after three days of that I'm starting to not be able to handle the dizziness and shortness of breath. When the doctor came in and asked me what was going on I told him that I was dizzy and weak and short of breath. He told me it didn't really look like I was in any sort of distress. So he ordered a urine analysis to see if I was dehydrated and left. He came back and said everything checked out but asked if I still wanted to get a bag of fluids. I said yes.
      They went to move me from the exam room to the infusion room and when I stood up I passed out.. Out cold. They took my bp while I was out and it was 78/56. I TOLD YOU I WASN'T LYING that I was actually struggling. They wheeled me back and started a bag of fluids, and then a second one. We finally got my bp up to 118/80 which I was comfortable enough to go home with.
     The frustrating thing about having an chronic/invisible/rare illness is that even when you're feeling completely shitty and worn down and trying to keep your head above water you still have to be your own advocate. You still have to educate the medical professionals around you to get the help that you need, to get the help that you deserve. The last thing I want to do when I walk in through the ER or urgent care doors is to have to fight with a doctor to get the treatment that I know will help me. In the end it worked out, I was able to get the treatment that I needed and the doctor took some time to ask me questions about what postural orthostatic tachycardia syndrome is and how it affects my day to day life. Hopefully the next time I have to go in or someone else who suffers from this doesn't face the same fight I did. This is why we educate, this is why we advocate for ourselves and others. Keep up the good work warriors we can do it!

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 

   
                                                                                                             

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