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 Ugly Truth About Dysautonomia

"Dear friend, I pray that you may enjoy good health and that all may go well with you,

even as your soul is getting along well."

-3 John 1:2

     Dysautonomia is the dysfunction of the autonomic nervous system. The autonomic nervous system is anything that your brain and body do automatically or without you specifically telling your brain to do it. So breathing, blood pressure control, temperature regulation, your heart beating, those are all examples of your autonomic nervous system. My system is just all together screwy. This is what causes my POTs or Postural Orthostatic Tachycardia Syndrome. It's also what causes me to be freezing in the middle of June and random fevers for no reason. But what I didn't know, is that Dysautonomia also effects the eyes. 

The nerves and blood vessels
 in the ol eye balls. 

     I made an eye appointment a while ago because my primary noticed my pupils were not reacting to light like a normal person's eyes would. My pupils also "click" when I look from side to side. I had also noticed a significant decrease in my vision especially at night. The decrease came on rather quickly. So to be sure we weren't missing something I made the appointment. I was so impressed on how knowledgeable this eye doctor was in Dysautonomia. Especially because I usually have to explain what it is to medical professionals. She said that I failed most of the vision tests and that my prescription would be moved up quite a bit. She also informed me that unfortunately, for someone my age this shouldn't be happening. I should have roughly the same vision from my 20s to my 40s. However; my vision is still getting worse. This is a result of my Dysautonomia. It's rather common for someone with a severe case to have constant worsening vision problems. The good news is the nerves and blood vessels in my eyes look healthy and seem to be functioning properly. She does not think that my vision will decrease so rapidly that it will lead to blindness, Thank God. But it is something we will have to continue monitoring. Which sucks because eyeglass lenses are expensive. 

     I'm so thankful to have a team of doctors that are watching out for subtle changes that I may dismiss. I'm thankful to have the health that I do have. For now, I'll be getting used to my new prescription and hopefully not squinting as much!  

With Love, 

Elizabeth <3 

*photo creds: Thank you @sassy.tachy.wacky on Instagram for the great Dysautonimia photo!*

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 

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 

The Longest Stay Part:2

"So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous hand." Isaiah 41:10

     Today was a fun day. The circumstances were incredibly sucky but if I'm going to fly in a private jet I'm going to enjoy every darn minute of it. The flight crew picked me up from the hospital in Las Vegas around 8:30 in the morning. They were extremely nice and one wasn't bad to look at ;) We took an ambulance to the airport and then I was loaded up first class in my fancy jet. It was a super small plane but it was only an hour flight and I got to lay back on a stretcher for it so I can't complain about the leg room. We took off around 9:15ish. A few minutes after take off the oxygen masks fell from the ceiling. Not because anything was wrong but because it was an older plane. I'm not going to lie I questioned my confidence in the small plane when that happened. It was a quick one hour flight into Burbank. We landed and I was loaded into a second ambulance. It took longer to get to the hospital from the airport than it did to fly from Vegas, Thanks LA traffic. 

     We made it to USC, which is a much much larger hospital than my usual one. I was moved into my new temporary home in the 5th floor South ICU. The accommodations here are nowhere near my normal hospital's. There is no couch or large TV and there really isn't room for visitors but I was here to get fixed so I really didn't mind what the room looked like. My wonderful mother, who I will never be able to thank enough, drove out shortly after I got settled in.

     I met with the intensivist that would be in charge of my case. He was nice and asked tons of questions about what we have tried and what they were thinking about trying. Their main goal was to get me off of the epi sooner rather than later so a few hours after I got here we started very slowly titrating back. The next morning I met with the allergist that would be on my case. She has two other mast cell patients she sees, but admitted I was her worst off. She agreed that we needed to get me off of the epi drip and we'd see what we could do from there.

   

 Getting me off of the epi went about to be expected. There were lots of benadryl pushed through my IV so I was constantly tired and napping. IV pushes of benadryl also give me a loopy feeling sometimes so I felt like I was in space most of the time. We were able to get me off of the epi for about 12 hours before I went back into anaphylaxis twice. They reconnected the epi at a low dose until we could figure something else out. This was when I brought the idea of a continuous dyphendyramine infusion to her attention. I had researched it previously and it was brought up in Vegas but it's not widely used or a widely known option. CDI is a continuous benadryl drip instead of epi. The continuous benadryl insures that my mast cells stay calmer. It doesn't cure anything but it greatly reduces the amount of anaphylactic attacks as well as greatly reduces the amount of rescue meds needed. The allergist had never heard of it so she went to work researching it. The next day it was decided that this was indeed going to be my best shot at getting off of the epi drip long term. They started the benadryl drip on Christmas Day and I'm not going to lie it was kind of the best Christmas present ever.

     The world's best mom drove out to LA again to spend Christmas with me and my benadryl! Somehow Santa found me even though I was in a different city! I woke up around 3am and there was a stalking and a Santa gift waiting for me next to my bed! I was completely shocked I wasn't expecting that at all. My momma came down to the hospital and brought lots of activities. I kicked her butt at Rummy, we tried to do a puzzle but I swear it was missing pieces so we gave up on that. The hospital also had a special Christmas dinner of steak and mashed potatoes. It was surprisingly delicious! Somehow my momma managed to make this Christmas special even though I couldn't be home. Hopefully I'll be home soon so we can do Christmas in January! Stay tuned for part III tomorrow! 

With Love, 

Elizabeth 

The Longest Stay Part:1

"For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future." Jeremiah 29:11 

      I'm not going to lie. There have been times in this last 16 days that I have definitely not felt the power of this bible verse. I had my most scary anaphylactic reaction a few weeks ago. I called 911. I don't remember much else other than the firefighter pulling me from my car and the sudden rush of adrenaline that went through my PICC line shortly after. The rest is gone. I have no memory of the ride to the hospital, I have no memory of the first hour in the trauma room, I have no clue what happened. I just know that when I did start coming back around the ER doctor was trying to place an airway tube. Thankfully; the third round of rescue drugs did their job and I narrowly avoided being intubated. This was the beginning of my longest hospital stay to date. 

   

 That night they put me back on an epi drip and I was admitted into the ICU. This is "normal" I figured I'd be there for a day or two as we backed off the epi drip and I'd be able to go home. That's not what happened though. Day two we tried backing off the epi pretty quickly, I cautioned them against this but they didn't listen. I made it about three hours off the epi drip before I went back into anaphylaxis. It wasn't anywhere near as bad as the day before but my oxygen levels dropped pretty rapidly. They reconnected the epi and gave a nebulized version of epi as well as benadryl. I recovered from this one fairly quickly. While on the epi drip I was still having "leaking reactions" migraines, itching and burning skin, upset stomach, the whole nine yards. These doctors consulted with Dr. Afrin who is a mast cell specialist in New York that has been following my case. He suggested we try an emergency dose of xolair. I had talked to my doctors about xolair previously and we were going to try it but the plan was to wait until after NewYears.

     We were able to get insurance approval for the emergency dose and they administered it on Saturday... It didn't go well. The thought right now is that I reacted to the medication being given to fast and not the actual medication itself. But either way it was a miserable reaction. It started off with the injection site swelling quite a bit and then I broke out in hives and extremely itchy red blotches. I got extremely nauseous and dizzy all at once. My body couldn't figure out if it wanted to heave or pass out. And then the dystonia hit. Dystonia looks exactly like a seizure except I'm "there" for all of it. My eyes are open and I can hear everything but I shake violently and my muscles get so tight and rigid. This freaked the ICU doctors out. They were once again considering intubation because I was having a hard time keeping my oxygen levels up on my own. It took two rounds of epi injection, benadryl, and ativan to calm everything down. It was after this reaction the ICU docs decided I was officially out of their scope of practice. They made the decision to transfer me to USC Keck hospital in Los Angeles. 

    It was definitely not an expected move but a very much necessary one. I was now facing Christmas in the hospital miles away from family. God has an interesting way of working everything out. Stay tuned for part II tomorrow. 

With Love, 

Elizabeth <3 

Celebrating The Victories

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

With Love,
Elizabeth <3

A New Era Of Hair

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

With Love,
Elizabeth <3

Dysautonomia Awareness Month

I can't believe it's already October. October is dysautonomia awareness month! Dysautonomia is the umbrella that postural orthostatic tachycardia syndrome falls under. POTS isn't as rare as everyone thinks it is. It is likely that millions of people suffer from it. However; not many doctors are educated or know about dysautonomia so patients are often misdiagnosed or dismissed for being crazy or making up their symptoms.

 I will never be able to thank the doctor that investigated my weird tachycardia enough. He realized that whenever he would come in the room and I remained laying down I was fine. But if I sat up when he would come in my heart rate would jump from 90 beats per minute to nearly 180 beats per minute. He then called in a cardiology consult and my POTS diagnosis was formed. We did a little more testing and it was confirmed. The first official answer to my crazy medical puzzle.

He helped me figure out a diet plan and medication that would go on to get my POTS under control. I still struggle with symptoms but not anywhere near the symptoms I was having before being diagnosed. I haven't been found unconscious on the street in months. Every day I'm taking another step in the right direction.
"In him was life, and that life was the light of the world." -John 1:4

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

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

Fuel The Fight

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

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

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

I Almost Went Paralyzed Again...

     On Friday my cardiologist officially diagnosed me with Postural Orthostatic Tachycardia Syndrome. Because of that he increased my mididrine dose from 5mg daily to 15mg. I'm not a huge fan of this medication to begin with it always makes me nauseous and if I don't eat within ten minutes of taking it I get extremely sick. Yesterday, even though I ate when I took it at lunchtime, I must not have ate enough and ended up getting violently sick. The problem with this is that my potassium will drop incredibly fast when I get sick. Even though I was trying to keep up with me getting sick by taking potassium it wasn't working. I was still starting to feel the effects of low potassium. My team and I decided it was best to go into the ER to be monitored and replenish the potassium safely instead of guessing at home.
     I was triage and taken to a bed right away when they saw how high my heart rate was and that it was also skipping beats. I could barely walk, stand, and breathe on my own by the time I got there. I was incredibly anxious because low potassium paralyzes you, it starves your muscles until they are no longer able to move and then major muscles start shutting down. The last time my potassium was this low I was taken to the ER by ambulance and the paramedics were breathing for me because my body just didn't have the capability anymore. My potassium was indeed extremely low at 2.4. I was starting to have tremors and bouts of not being able to breathe. We started infusing IV potassium as quickly as we could. They gave me a total of 160meq of potassium over a four hour period. Unfortunately, potassium is also hard on my stomach so about two hours into the infusion I ended up getting sick again and we had to redo 80meq of potassium. I was in the ER for a total of 8 hours. The doctors there and I decided that if I responded well to this treatment then there wouldn't be a reason for me to stay overnight because we do know what caused the initial drop. I'm extremely thankful for my team of doctors who I can call whenever I need them as well as amazing ER staff who were quick to react and got me back where I needed to be.
     I'm going to talk to my cardiologist on Monday about looking into other medication options or seeing how I respond to a lower dose. Hopefully, we'll be able to figure everything out soon and I'll be stable enough to go back to Nebraska in a few weeks!

With Love,
Elizabeth <3

The Good And Bad Of Doctors

 

   Yesterday I had an initial appointment with a new GP or general physician. I also was hoping that she'd spearhead my team of doctors. That was not the case. It was an awful, she didn't listen to a single word I said. Every time I would try to explain what was going on symptom wise she would interrupt me every two seconds. She only wanted to treat my labs and not the heart rate or the syncope. She wrote me off as some one who was over reacting. I was in the ER the other night and she didn't really seem to care. She spoke way to fast and got frustrated when I asked her to slow down and reexplain everything. It makes me feel terrible that I asked for clarification. When my parents came in she finally started to listen which was twice as frustrating. I'm 21 years old why wouldn't you listen to me in the first place?! My parents were finally able to convince her to refer me to a cardiologist and she decided to refer me to an endocrinologist. That itself was terrible. I hated that doctors appointment and I left in tears. I felt like it was a total setback and that we weren't going to get any answers.
   
     Today I had my cardiologist appointment. The cardiologist and all of his nurses were AMAZING! They actually took about an hour to listen to me. They looked at all the paperwork that I had brought in from other doctors. I asked them if I could show them the jump in my heart rate when I stood up and we did several tests in the office. Do you know how great it is to be heard?! While I was there he officially diagnosed me with POTS (postural orthostatic tachycardia syndrome). I am seeing a different kind of cardiologist in two weeks. He will discuss the diagnosis and how we will further treat it. But, until then we increased my blood pressure medication because it hasn't done much yet. I also talked about how terrible the side effects to that medication have been and he discussed how to combat that and make it a little more effective. I'm ready to try it again! He also talked about life style changes I can make until my next appointment as far as diet is concerned. We also scheduled a stress test so that we will know how much exercise my heart can tolerate so hopefully I can start slowly working out again which will eventually help make my symptoms better. I left yesterday's appointment feeling so drained but left today's appointment with answers and a plan! I'm so excited to continue looking for answers to my potassium problem next week with the endocrinologist. There is so much hope in me now! I've been so discouraged lately and now I feel refreshed and hopeful!

     There is so much hope friends! Whatever you are trying to figure out, what ever answers you are searching for, or what ever you are discouraged about... There. Is. Hope. I am praying for you and rooting for you!

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