I Went On An Adventure!

"The Lord himself will go before you. He will be with you; he will not leave you or forget you. 

Don't be afraid and don't worry." 

-Deuteronomy 31:8

     I went on an adventure.An actual adventure! I flew to Kansas City on Friday for a weekend filled with family and cold weather. Oh how I missed the cold weather. This was my first trip with Melvin the IV pump and my benadryl bags. 

     It was... interesting trying to get through TSA in Las Vegas. Prior to my trip I called the TSA Cares hotline (I highly recommend this if you are traveling with any kind of medical condition or equipment) the lady was extremely helpful and told me how to best prepare. She also notified the TSA supervisor of my flight information so they were expecting me Even though I have TSA Precheck they still asked me to take off my shoes and jacket. I then told them my backpack could not go through the scanner because a) it's attached to me and b) I was advised by my pharmacist that the benadryl bags should not go through the scanner.  They then told me everything except for the medical supplies had to go through the scanner. Which was false. I explained what the TSA Cares lady had told me. They went to find a supervisor who of course was training a new agent. The new agent was now in charge of my bag check and pat down. And she was 100% by. the. book. Every last item in my bag was pulled out and swabbed for any residue. After she cleared by bag she told me she had to see the PICC line site. As I went to remove the sleeve that covers my line she yelled "please put your hands where I can see them! Stop making sudden movements!" Which of course caused Metro officers to walk over ready to take me down. So that was fun. 45 minutes later I was FINALLY cleared from that miserable security checkpoint. 

     Southwest is seriously the most amazing airline when it comes to accommodating your needs. I notified them when booking my flights that I have severe allergies and would be traveling with medical equipment. I was able to preboard the flight to wipe down my seat and tray table and to introduce myself to the flight attendants. They were all just so understanding and kind. On my flight home from KC it was a pretty empty flight. One of the flight attendants noticed one of the passengers was wearing extremely strong perfume and of course this lady chose the row directly in front of me. The flight attendant told me politely that she thought I may want to move seats, I am so so thankful she was looking out for me. She also helped me change my benadryl bag mid flight and was genuinely curious about why I had Melvin the IV Pump. When we landed in New Mexico the flight crew switched and she brought the new flight attendant back to meet me and fill her in. I can't thank Southwest enough for everything they did to make this trip as painless as possible. 

     Missouri was fantastic and cold! Friday night I stayed at my cousin's house and then Saturday and Sunday I got my own hotel room. I came prepared with a bulk pack of handwarmers and lots of beanies! I was hoping for snow but all I got was ice, which isn't nearly as fun. On Sunday morning I got on the elevator to go downstairs for the continental breakfast. Well... we made it to the first floor but the doors never opened. We waited another minute or two and still nothing. We frantically pushed the door open button and nothing happened. So we called the front desk and were told it would be another 2 hours before they could get the elevator guy to come free us. My IV pump started beeping low batteries and I told the front desk lady that I didn't have any batteries on me and my medication would soon stop running. That was a slight fib, I had 3 sets of extra batteries on me but they didn't need to know that. But that worried them enough to call the fire department to come equipped with a crow bar to free us! Unfortunately, there was no continental breakfast left after we had been rescued. 

     I had such a fun time hanging out with family! I knew traveling would be exhausting and would come with a long recovery time but it was so worth it. I feel more confident now that I'll be able to live a somewhat normal life even when my body is rebelling against me. What adventures have you been on recently? Or what adventures would you like to go on? Hopefully there are more fun adventures in my future! 

With Love, 

Elizabeth <3 

The Longest Stay Part: 3

"Lord my God, I cried out to you, and you healed me. O Lord, you brought my soul up from the grave; you kept me alive, that I should not go down to the pit." Psalm 20:2-3

     So here I sit. Day 16 of this hospital admission. I have officially been off of the epi drip for four days with NO ANAPHYLAXIS!! The benadryl pump is proving to be incredibly effective! I could have never imagined it would work so well. But now we're in a predicament. I'm in California and the home health company that I would be using is in Las Vegas. It is nearly impossible to coordinate me going home on a benadryl pump from California. So the plan is to transfer me via air ambulance back to Las Vegas, get everything figured out with the home infusions and then discharge me from Vegas. My ICU doctor and allergist gave the insurance company clearance for transport on Tuesday... It's now Friday. Everything is set, the airplane, insurance approval, everything. We're just waiting on a bed to open up in Vegas. Which is sounding completely impossible. 

     I like to consider myself a patient person but I'm starting to get antsy. I feel great, honestly better than I've felt in a really long time. The benadryl is fighting my crazy mast cells for me so I feel like I have more energy and feel less run down. But I'm still stuck in the ICU. I'm still tethered to an obscene amount of wires and people are still keeping track of how much I pee. I don't belong here anymore. My body knows that, my brain knows that. So I'm getting inpatient waiting for this bed to open up in Las Vegas. I want to be home in my own bed. I want to be off of the constant heart monitors and I want to get back to my new life with benadryl coursing through my veins 24/7. Because for the first time in a while I see hope that I can live a normal life. At least for a few months while we let the benadryl do it's thing before we try to get me off of it. I can't tell you how extremely difficult it is to let this happen in it's time. I haven't felt actual sunshine in over two weeks. I haven't been able to take a proper shower in over two weeks. This waiting game is not one I'm a fan of playing. 

   

The nurses have been extremely nice! They have gone above and beyond their job description by bringing me jello late at night, sneaking me brownies from the cafeteria downstairs, just coming into chat when they have a few extra minutes. They have been fantastic. I would have lost my sanity a long time ago if it wasn't for their kindness. I've been here long enough that I'm starting to learn about their lives outside of the hospitals and we share pictures of my friends and their kids. I guess if I'm going to be holed up somewhere I might as well have nice people surrounding me.

     Hopefully I'll be shipped back to Vegas tomorrow. If not after the New Year I will work on just getting discharged from here. I'll keep playing the waiting game. Because although it's a sucky game to play at least I'm stable, at least I'm safe, at least I'm not in anaphylaxis. 

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 

The Hardest Decision

     Yesterday, sitting in the ER after yet another scary near death experience, I made one of the hardest decisions I have yet to make. I decided it was time for me to move back home to Vegas. This picture was taken after a full mental breakdown and before a second full mental breakdown. I have gotten to the point where I have nearly died (no that is not an exaggeration) in the back of to many ambulances to be half a country away from my family. This is something that I've been thinking about for the last couple of weeks. But I was thinking maybe the end of the year or at the soonest in the next few months. But when I was in the ER last night I broke. I texted my mom and said I was ready to come home. She took the first flight out this morning to help me start packing.
     I think I'm holding it together so far. But on the inside my heart is breaking. Nebraska has become my home. It's the first place I have ever felt like I've really belonged. Apart of my heart is staying in Nebraska and the rest of me has to find the emotional strength to keep going to Nevada. My now roommate has honestly become one of my closest friends I've ever had and I've only known her for six months. She knew about my health issues and she still decided to move in with me. I gave her plenty of outs throughout our friendship and she still stuck with me. That means so much more to me then she will ever know. And now I feel like I'm just abandoning her. She tells me she's okay, that my health is what matters but I'm scared I'll lose her friendship to the distance and I know my leaving her so suddenly is way more than she anticipated to deal with this Summer. I'm trying to make our last few days living together exciting and at least a little bit memorable but nothing I can think of seems like enough. I mean how do you thank someone for spending countless hours in the ER with you and checking to make sure you're still breathing when they leave for work? You just can't thank them enough, I can't thank her enough.
      I've also had to put in my two weeks at work tonight. And even though I haven't actually worked a shift in almost two months it still hurts. That was my first job in EMS, they were my work family who looked out for me and who I've shared so many jokes with. They weren't always my favorite humans but I love them and I don't want to leave. There were weeks I saw that station more than my own apartment and now I just have to leave it? It's hard. I teared up just texting my boss about giving my two weeks. I'm going to be a hot mess tomorrow when I go to pick up my stuff and say goodbye.
     Nebraska has changed my life. I feel like my decision to move home is giving up and admitting defeat to my illness. Like I'm finally letting my sickness control my life. And I know that's not a good way of looking at it. I know this move is what's best for me and that when I get control of everything I can always move back here. But things will be different then and what if I don't get to the point I'm able to come back? There's just a lot going through my mind right now and I'm trying to stay positive. I'm trying to focus on the new adventures ahead and the possibility that one day I'll feel in control of my health again. But that's hard to do. For now I will keep praying for peace and guidance, I'll try to keep my crying and mental breakdowns to a minimum as I start packing, and I'll try to make as many memories as I can before I leave. Who knows what my future holds, what I do know is that the people I've met here have changed my life and they will always have a place in my heart.

With Love,
Elizabeth <3

My Week In Pictures May 14-21 2017

   
Hi Friends! I just created this week's The Daily Climb picture album! This is where I post all of the pictures I take throughout the week to give you guys a better look at the day to day life of a POTS patient, chronic illness warrior, and average 21 year old. I hope this gives you guys a better understanding of what I go through on a daily basis <3

The Daily Climb May 14th-21st

What I Wish I Could Tell You

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

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

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

With Love,
Elizabeth <3

The Daily Climb: A picture album update

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

The Daily Climb Photo Album

HAPPY EASTER

     HAPPY EASTER FRIENDS! Today is one of my favorite holidays of the year. Every one is always so joyful, spring is in the air, and there are flowers everywhere! It's just hard not to appreciate everything that I've been blessed with. Today is also hard. I moved away from home in 2014 and Easter was always such a big day in my house. The whole family would get together for dinner and we'd eat and there would be Easter egg hunts (which I would always kill at). It's just definitely a holiday I always wish I was home for.
     Thankfully, I will not be alone this year. I have been invited to a family's Easter dinner. I have been accepted as one of theirs this holiday and I couldn't be more excited. There aren't going to be any Easter eggs and my mom isn't going to be there and my family isn't going to be there. But I will have a stand in family to hug and laugh with. I also offered to work tonight for someone who wants to be with their family. How cool is it that I get to go to an Easter dinner and then be able to turn around and allow someone that same thing! That's something that always makes me feel a little bit less down. Knowing that I'm giving up some of my time so that someone else can have a great holiday. That's love friends!
      I'm asking you to find the joy today! Find something, one thing to feel happy about or blessed about and run with it. Find your stand in family, there out there I promise.

With love and Easter blessings,
Elizabeth

Piecing It Back Together

*Trigger Warning: Car Accidents & Thoughts of self harm*
     Well friends let's back up about a week. I was involved in a car accident about a week ago. The car in front of me on the highway rolled into a ditch. The driver had a heart attack, which is what caused the accident, and after several minutes of CPR they declared him deceased in the hospital. There was also a four year old in the backseat while all of this was happening. When the sheriffs arrived on scene they pulled the little girl out of the back seat and tried to calm her down. She was so upset. She wouldn't stop crying. After the driver was taken to the hospital I asked the officer if I could hold the little girl. i took her from him and walked over to the cop car, we watched the lights and I rubbed her back and sang "Jesus Loves Me". While holding her I did a visual assessment. Her pupils were equal and reactive, she was talking, no obvious sign of injury. She was by all standards fine. By the time the second ambulance arrived for her I had calmed her down. They decided to take her in just to be sure there was nothing wrong. The fire department allowed me to help them take vitals on her because she had started to trust me. She was stable when I left her. Nothing out of the ordinary.
     A week later the department had their critical scene debriefing and I joined in via skype. It was then that I was informed that the little girl who was holding so tightly to me at the scene had passed away in the hospital later that day. She had a brain bleed that we couldn't have caught on the scene. Unfortunately the bleed was caused by circumstances outside of the car accident. I wish there was more I could have done. I wish she could have shown me one sign that maybe that one sign could have changed our course of care. I started down that spiral that so many people in my profession start down.
     I didn't know what to do. I was beating myself up for things that I couldn't change. I know that I couldn't change anything, but there's always those what if's. What if she had shown a sign that I could have sped up her care. I found myself sitting on the floor in the kitchen with a knife wondering if maybe I'm not worth the next few breaths. I take this very seriously. I caught myself, I caught those thoughts and they scared me. I needed help. It's okay to ask for help. I booked a ticket for the next flight home. It was last minute, but it needed to happen. I couldn't be alone for the rest of the night and I knew that the people who understood me most were back in Las Vegas. So I had to go. I packed my bags and while sitting in the car getting ready to go my mom called me. She could tell something was off earlier in the day, but I didn't tell her what was wrong. She had called me to check on me. I told her I was coming home and asked if she could pick me up. She didn't believe me at first and thought I was joking, but when she realized I was serious I think she was relieved. She knew that me coming home was the best thing for me.
     Over the next few days I went on walks with my mom, I went to the fire department and was able to talk to them about how they deal with calls like these. I also got to talk to family members who have also been through things like this. Sometimes talking about things and confronting your feelings is the best way to understand yourself. They say laughter is the best medicine and I can honestly say that after three days of being home this is true. I know that I have a ways to go. That the spiral will continue if I don't keep hitting it head on. But going home helped. Asking for help was the best thing I could have done for myself. Sometimes taking time for you is what you need to help piece yourself back together.
     So the next time you catch yourself thinking things that scare you. Take time to ask for help. Ask whoever. I've found that almost everyone is willing to help if they know what's wrong.

With Love,
Elizabeth