It Takes A Village

"How good and pleasant it is when God's people live together in unity!"

-Psalm 133:1 

     When I started blogging I didn't expect anything to come of it. I started it as a place for me to ramble and rant about life and health and a place to keep more of a journal of events in my life. I had no idea it would snow ball into a place for other people who are just like me to connect and cheer each other on! Before joining the online spoonie community I felt alone and isolated. I had amazing friends but none of them truly understood what it was like living with health issues every day all day. After finding the spoonie community I have been able to establish friendships that reach far beyond those who live near me. I have been able to connect with another girl my age in Las Vegas who also has Mast Cell. I've been able to connect with a delightful pal with a dog Willow who lives in a different state, but has encouraged me to keep fighting more than once. She is also the creator of the amazing card at the top of this post! 

     I have also found hope, encouragement, and answers on facebook support groups. They have been there night and day to help me learn the best way to advocate for myself, answer all of my random questions that doctors struggled to answer, and encourage me when all I wanted to do was give up. They were there. They have gone through what I am going through. They have moved the mountains I am currently trying to climb. They too, have fought with doctors on getting appropriate testing and understanding. 

     I don't know where I would be mentally without these amazing humans who stand (or sit) with me every single day. The spoonie community is a strong one, there is no bond like the friendship between two people who have never met but share the same daily struggles. To all of you spoonies thank you. And to all of you non spoonies, I appreciate your support and encouragement as well. Sometimes it really does take a village! 

With Love, 

Elizabeth <3 

*If you have a moment I highly recommend finding @idleidealsartwork on Instagram! She is so incredibly talented and is doing AMAZING things with her talent all while fighting her own battles. You can request a card for someone you know who is battling a chronic illness or disability on her Instagram page! She also has spoonie stickers available which are just as amazing as her cards! And if you really sweet talk her she might send you a photo of her adorable wittle dog Willow!* 

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 

A Letter To My Nurses

"This is my commandment, that you love one another as I have loved you."

-John 15:12

     To every nurse I have had, thank you. Your hard work and dedication to your patients hasn't gone unnoticed. You have all spent countless hours responding to my call light, checking on me when all the monitors start beeping loudly, priming my IVs and fixing the pumps when I accidentally break them... three times. You have all shared in my triumphs and set backs. You've given me a shoulder to cry on when I just didn't think I could keep going anymore. You helped fight for me when doctors were stupid and trying to move way to fast. You have walked the halls with me and stood by my bedside in prayer. I'm tearing up just thinking about all that you have done for me and all of your other patients. 

     I know your days get long and not all your patients are as awesome as I am. Thank you for not bringing your frustrations with other patients and doctors into my room. For always being positive when you walk through my door even though it was probably difficult for you. I forget that you guys spend as much time on the phone fighting with my doctors and case managers as I do. I appreciate that more than you will ever know. 

     Nurses are the heart beat of the hospital and they don't get enough credit. They are there day in and day out. You have all brought me pudding cups at three in the morning because I was on steroids and starving. You have all brought joy and smiles into otherwise dim ICU rooms. Hospital admissions are hard, they take a toll mentally, but my nurses did everything they could to lessen that. 

     Thank you for all you do. Not just for me, but for all your patients. Your hard work doesn't go unnoticed. 

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 

5 Things 2017 Taught Me

"Therefore, if anyone is in Christ, the new creation has come: The old has gone, the new is here!"

-2 Corinthians 5:17  

    

     2017 was most definitely not my year. It wasn't a bad year by any means. It just wasn't my year. I had to move home from Nebraska because I could no longer live on my own. I spent countless days in a hospital bed trying to figure out what was actually wrong with me and how to fix it. I had to stop working at my favorite job and change my life's plan yet again. 2017 was filled with as many up's as it was filled with downs. But I'm not going to lie. I am extremely relieved it's 2018 and I am able to put last year in the past. I'm not one for New Year's resolutions. I personally think New Years resolutions is a thing gyms made up to boost their membership sales once a year. But I do want to take a few minutes to reflect on the things 2017 has taught me. So here goes... 5 things 2017 taught me. 

1) How much friendships really mean to me 

     This year God has put some truly amazing people in my life and strengthened the relationships I already had. My friends went out of their way so much this year to make sure I was happy and healthy. They came to visit me in the hospital, and snuck pizza in. They would text me if they hadn't heard from me in a while. We adopted cats together, saved lives together and got drunk while playing cards against humanity together. Those experiences will be on my heart forever. They don't know what they mean to me. These lovely humans have stuck with me through thick and thin and their friendship just means oh so much to me. 

2) How much I need Jesus 

     My faith has always been strong. But 2017 showed me just how much I needed the hope of Christ. This was a year of many difficult trials and it was always so easy to ask "why me?" or "what did I do to deserve all of this?" It took a lot of focusing to realize that I am all part of God's plan. That he will work everything out in his time according to his plan. I often forgot to praise and thank him when things were going well. But would be quick to ask for something different if the scale shifted in a different direction. 2017 taught me just how much I needed the strength of the Lord whether I wanted it or not. I have grown exponentially stronger in my faith this year. 

3) How to persevere 

     If there's one thing I learned this year it was how to keep pushing on, even when the cards are stacked against you. It felt like 2017 was a never ending string of bad news. News of not being able to return to my EMT job, deciding to move back to Vegas because I couldn't live a normal life on my own, news of a new diagnosis and then another. It was just a string of bad luck. But through all of that I learned how to keep my head up and keep pushing my limits. I learned that when life hands you lemons you throw that shit back and demand some chocolate. Not every scenario in life is going to be picture perfect and that's okay. It's how you handle the good, the bad, and the ugly. 

4) It's okay to have mental breakdowns

     It's perfectly okay to admit defeat and break down in tears. That's normal. This was hard for me to grasp. I don't like breaking down. I feel like it's a sign of weakness. I like feeling like I have it all together even when I don't. I learned this year it's okay to sit in the dark eating ice cream and just having a good cry. But I also learned you can't live there. You have your pity party and you move forward. There will always be those days you want to go lay in a hole and hope no one finds you. But there will always be great days filled with sunshine and hope. You can't let the dark days out number the shiny days. You have to find the balance. I'm still working on finding that balance. It's a hard line to toe. But I'm getting better at it. 

5) Just how incredibly strong I am

     I don't mean to toot my own horn or anything. But this year I realized just how incredibly strong and resilient I am. My body tried countless times to stop breathing and give up but I kept pushing. I kept moving forward. I am so much more stronger this year than I was last year because I had to be. I didn't have a choice. I am so proud of my little body for keeping on. You don't know how strong you actually are until your strength is all you have left. My strength was tested this year; but I won. I won the battle against myself this year and I couldn't be happier. 

What are some of the things 2017 taught you? I pray that 2018 is filled with God's richest blessings for you. That we all come out of 2018 stronger than we go into it. What ever your year has in store for you take it in stride. You can do this! 

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

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 

Silent Savsana

     I might have self invited myself to Silent Savasana. It was a free yoga class held by the pool at Red Rock Hotel and Casino in Vegas. I am always looking for fun free things to do. It's even better if it doubles as a workout class that I'm able to do! I had so much fun! I met some family and friends there and none of us really knew what to expect. I was completely lost wondering around the hotel in work out clothes and a yoga mat. I felt so out of place but once I finally found everyone and got settled in it was super enjoyable! The weather was really nice for Vegas standards and the sun was starting to set so it ended up not being bright or to hot which I was really worried about. I'm trying to work out more. Not to lose weight or anything, although that would be a nice perk. But just to keep my heart healthy and my body healthy. I can't run or walk long distances so I'm always looking for better ways to stay healthy that are "easy" for me or that I can do without passing out from my POTs. I'm so glad I was able to find this company. Right now I think they are just in Vegas but they are trying to expand. Check them out on FaceBook!
     What ever your workout goals may be this week you can do it! I did and I don't even have workout goals. :)
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'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

Why I Refuse to Be "Sick"

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

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

With Love, 

Elizabeth <3