Where Do I Go From Here?

     What do you do when you get released from the hospital after seven days of being under the constant care of medical professionals? Where when your throat starts closing and you can no longer get air into your lungs the life saving medication and quick response is only a push of a button away. And when you close your eyes to go to sleep you know someone will be coming into check on you in a few hours to make sure you're still breathing. It's hard going back to a normal life. It's hard trusting yourself. I don't trust myself. I don't trust my body. Last night was my first night out of the hospital and I woke up twice unable to breathe, throat swelling, gasping for air and I had to deal with it all on my own. I had to mix the saline and the medication into my nebulizer and remind myself that I was okay. That it would be okay in a few minutes. I don't have access to IV benadryl so I have to wait until my throat opens back up to be able to swallow benadryl. It takes longer to get better at home. It takes more willpower to tell myself this to will pass.
     My team came in to my room before I was discharged to go over the home plan. They wanted to make sure all of my questions were answered before they gave the final sign off for me to go home. The lung doctor, respiratory therapist, my nurse that day, and the discharge planner all came in to make sure we were all on the same page. And to be honest we questioned if it was time for me to go home. I was still having life threatening reactions about every six to eight hours. The only difference is they were now being controlled by a nebulized medication and not an epinephrine shot. We questioned if maybe a few more days under constant monitoring would be beneficial. But I wanted to go home. I had spent seven days in the hospital and I just wanted to be in my own bed; so we decided to move forth with discharge. I have to set an alarm every six hours to give myself my steroid medication, you know the one that keeps my lungs open, yeah. That's a lot of pressure. Keeping myself alive is a lot of pressure.
     So what do I do from here? How do I go back to life as I know it? One tiny inch at a time. I'm staying close to home or at least people that know how to help me. I'm taking breaks when I need them and reminding myself it's okay to not be okay. I'm still having lots of reactions. I've had four since I got home yesterday. I'm staying on top of my meds and making sure I'm always near benadryl and trying to get a head of reactions when I can. I have a doctor appointment next week to discuss next steps.. I don't know where we'll go from here. I feel like I've hit rock bottom as far as health goes and I will take anything. Hopefully the labs that were drawn in the hospital will yield some answers and I will be able to get my life back on track. But for now... I'll keep on going. One step at a time... little by little.
"May the God of hope fill you with all the joy and peace as you trust in him, so that you may overflow with the hope by the power of the Holy Spirit." - Romans 15:13

With Love,
Elizabeth <3

When The Flu Shot Strikes Back

      So I had to get my flu shot. I'm applying for jobs and the health department requires people in my field to get the flu shot every flu season. So yesterday I went in to get it over with. I filled out the paperwork and waited for what seemed like forever. The pharmacist was super nice and we jokes while she stabbed me in the shoulder with a needle. And that was that. I got up and started walking out to my car.. until I couldn't breathe any more. I sat down on the floor and went for the benadryl. The pharmacist must have seen me sit down because she came over to make sure I was okay. She called 911 and I administered my first epi pen. I hate that feeling of not being able to breathe. My flu shot injection site swelled up like a damn balloon. My normal fire department rolled up and as soon as they saw it was actually me they drew up more epi and gave me another round. As well as a round of IV benadryl because I wasn't able to swallow my oral benadryl. They were awesome. They concocted some resemic epi to give me through a nebulizer as well as albuterol. We made it to the hospital without having to intubate or bipap me which was fantastic. Unfortunately, I was admitted into the ICU for the night because my throat swelling was still an issue. Thankfully, I made it through the night with only two rebounds and will be moving out of the ICU into general observation soon. They expect that I'll be able to go home either tonight or tomorrow morning which would be fantastic! Please keep me in your prayers!

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

I Am Allergic To Benadryl

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

I AM Allergic To Water 

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

Sleep Is A Trigger

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

I Hate Unfamiliar Social Situations 

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

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

With Love, 

Elizabeth <3 

Ephesians 2:5 

HOW to Best Help Me In An Emergency Situation

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

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

With Love,
Elizabeth <3
Jonah 2:1

Health Update

HEY FRIENDS!! I know every time everyone sees me they are excited because I'm alive. Not a single person knows how it's physically possible right now and I am so excited about that. And for that reason I'm alive. But I have seriously no idea physically how I'm doing. Physically symptom wise I'm doing terrible I feel like I'm twitching in a hole somewhere. But at the end of the day it's how do I feel. Mentally I'm doing great! I couldn't tell you what's different but I've realized something life changing. For the first time ever my health and anxiety are the same exact thing. And for those of you who have been with me regularly know what that looks like. I can't describe it to a damn person in my head but I've figured it out. So treatment wise and prognosis wise I'm thrilled beyond belief!!!! However my brain is still trying to catch up with that mentally and it's just so much to handle that I physically not able to. And that's okay. So I do know immediate treatment plans. I do know that right now everything physically is staying status quo. Medications are the same and will continue to be the same emergency wise for a while. Up to a year that I know of right now. So if you know anything life threatening wise as far as when I use my epi pen please please please suggest it should you think I need it. However; day to day medications may change quite a bit. However; mentally I'm viewing my disease backwards and I'm excited! My hope currently is to live it that way too. By knowing what I know now and working backwards so if weird life changing things happen that's most likely what it is! And that's so exciting! So that's where I am please feel free to contact me with any questions but just know if I don't reply I'm most likely alive and if you know of someone who has asked and hasn't seen this update please share it!