The Struggles of Being Muggle Sick

"But I will restore you to health and heal your wounds, declares the Lord."

-Jeremiah 30:17

     I was struck with the plague. I should have known it was coming. I took a trip on a flying flu can last weekend. And I should have known that with my iffy immune system I was going to get sick. Even though I wore a mask the entire time I was in the airport and on the plane and I washed and sanitized everything. I still hit the infectious disease jackpot. 

    It started Wednesday night. I was nauseous but I blamed it on my lack of eating healthy food. Then Thursday I started noticing muscle fatigue and just all over fatigue in general. I woke up and went into work because I thought it was just a cold. I could barely swallow because my throat was sore and I had the chills. On Friday, I left early from work. And on my way home (TMI Upcoming) got incredibly sick on the side of the road. I decided not to risk it and went into Urgent Care. Where I was hit with the news I had strep throat/ the Hong Kong flu virus/ and a small UTI. Oh the joys. My fever was also creeping up. 

     Now for most people.. yes, this would suck. But not only am I sick with this normal people crap. I still have to manage all my rare crap. I still had to wake up from my Nquil coma to change my benadryl bag. I still have to make sure I'm taking all of my dreaded potassium plus more to stay on top of the sickness. I am allergic to almost every anti nausea medication so I was on my own on that front. The antibiotics they gave me need to be taken four times a day. Being sick and then normal people sick on top of it just wears on your body, both mentally and physically. I think I have finally turned a corner and am on the upswing of things. Hopefully. But this is just a good reminder to everyone, chronically ill or not, wash your hands and stay home if you're contagious. None of us want to deal with this. 

With Love, 

Elizabeth <3 

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

The Fire During My Hospital Stay

     Oh fifth floor adult inpatient unit, how I wish I wasn't so familiar with your halls. I was recently released from a five day hospital vacation. I wish I could say that it yielded more answers to what feels like my never ending health problems, but alas, it did not. I don't want to say it was a complete waste of five days and a ton of hospital bills, but right now that's what it feels like. I didn't have my computer with me to update my blog while I was there, but I did have my phone! So here's a recap of me week!

     Intake was about a three hour process. I was supposed to be a scheduled admission but something on the hospital's end got messed up and there wasn't a bed already ready for me. Which was frustrating and I should have just ran for the hills then. Thankfully, I wore my comfiest clothes and had my phone charger handy so sitting in the waiting room wasn't a huge deal, I was just hungry.
      While I was sitting in the waiting area starving myself to death my body had a different idea. I had an allergic reaction. I noticed my chest was super itchy and that I was starting to get nauseous. I followed my protocol; take 50mg of oral benadryl and wait. After about ten minutes of trying not to itch my chest my throat began feeling tight. I took a puff of my albuterol inhaler to see if maybe that would help. No relief. It started to get way worse. The impending doom feeling was setting in which is my sure sign it's time to get help. I staggered up to the front counter clutching my chest. The lady could probably hear my breathing from across the room. I stabbed myself with an epi pen and we quickly got me a wheelchair over to the ER. I was then admitted as an ER patient and six hours from the time I originally showed up that morning I was taken to my room. It was a frustrating start to the next four days.

     Day two was supposed to be my big testing day and then go home on day three. Turns out that wasn't the case. Since being admitted I hadn't been able to go a full 12 hours without a near anaphylaxis episode. And without knowing what was triggering them my doctor wasn't comfortable sending me home. The silver lining of having so many reactions in a controlled environment is that we were able to constantly monitor me throughout the whole thing. The doctor said I have what he would call "atypical anaphylactic reactions". Which means that instead of my blood pressure dropping like a normal anaphylactic reaction mine actually sky rockets. 10 minutes before a reaction my blood pressure would be around 115/70s. During a reaction my blood pressure would shoot up to almost 180/90s. This would happen consistently almost every single time. After doing some research my doctor was able to link this to mast cell activation. He said a lot of patient's with the same thing as me have the same time up blood pressure jumps during a reaction. He said this is probably why it gets mistaken for a panic attack so often. It's highly highly unusual that the blood pressure would go up instead of down. So at least we're slowly learning new things about my condition. Baby steps right?
     Day four was the most difficult day emotionally. I was just done with being in the hospital. They wouldn't let me off of the inpatient floor (for good reason) so I felt like I was trapped. The floor went in a circle and if you walked that circle 9 times it made a mile... I walked four miles that day... I watched several episodes of HGTV and The Food Network shows only because that's all that was on. I was starting to get a meek outlook on being there. Up to this point I was fine with being an inpatient. I knew that by being there I was safe, getting the care that I needed, and we were learning more about how my messed up body works. But day three my brain was just done. My nurse was a little on the crabby side and wasn't much for small talk and conversation, the medication they had started me on was starting to make me feel weak and lethargic and I was starting to get sick of hospital food. It was just all around a bad day mentally. On top of all of that my IV decided to start leaking a strange color fluid so we had to start a new one in my hand. Which is my least favorite place to start an IV. I hate it, and it took 45 minutes and a pediatric nurse to find a vein that was usable enough. The only real excitement I had that day was this fire alarm/ drill. It ended up being a false alarm but we were actually told to be prepared to evacuate the floor. Because a real fire had been reported on our floor in the East tower. The fire department showed up (none of them were cute dangit) and we were given the all clear and I was able to resume my laps around the hallway.

     I was finally released around noon on day five! No really big new news to report, but at least I had a little more information. At least I had been validated by a doctor that this wasn't anxiety or all in my head. As sucky as it was I would do it again to learn more about how to better take care of myself, and how to better treat my reactions. Hopefully, I'm able to stay out of the hospital for a while though. This is me in my car with my IV site bandaged up which means I got the okay to go home! Friends, whatever your sucky situation is this week, hit it head on. I believe in you! 

With Love, 

Elizabeth <3 

   
                                                                                                             

My Half Dead Night

     This is what conversion disorder looks like. It creeps up on you when you least expect it. For me, last night it started while I was being productive. While I was getting things done and up and about. It hit me like a ton of bricks. Like being ran over by a truck and then that same truck backs over you again and again. I had to sit down because I was nauseous and the world was spinning. I had to rush to the bathroom because I had to get sick. Laying on the bathroom tile was my only option for a while... And then the chills set in. I couldn't get warm. I had my bed heater turned on in pajama pants and a sweatshirt and I still couldn't get warm. That's when I decided to check my temperature. 102*. Do you know how sucky it is to go from productive and standing to dead and unable to move because everything hurts so much? I took off my layers and sprawled out on the couch. A heating pad on my stomach to help with the nausea and cramping, and an ice pack on my forehead and back of the neck for the fever. I was officially down for the count. What's even more sucky is I can't take anything for the fever because everything I would normally take lowers potassium. So I can only take those things in extreme emergencies, which unfortunately was not last night. I settled in on the couch for some        Gilmore Girls watching. After about an hour I decided to check my temperature again... 103.2*. That's the highest it's ever been. One more ice pack for my lower back. 

      I was cringing in pain from the stomach cramping, Trying to hold the floor in one place because it was spinning so much. And no, I was not drunk. I hadn't even been drinking. And so the story goes. For four more hours at least. Half running to the bathroom to get sick and then crawling back to my place on the couch. Over and over again. Normally if I just lay still everything goes away, if I sleep a little bit my brain resets itself. Not last night. 

     I finally decided to take a xanex. You know the medication that calms down the brain. I took .5mg and crawled back to my spot on the couch. It must have worked. See, conversion disorder is when my brain gets so stressed and worked up that it doesn't know how to handle itself so it just gives up and my psychological stress becomes a physical reaction. The chill pill must've worked like it's supposed to. Because a little less than an hour later I finally passed out asleep. The magic of sleep. 

     I woke up around 4 in the morning to a random thunderstorm. I checked my temp again and it had broken and come back down to 99*. I can live with 99 degrees. I got a cool towel to put back on the back of my neck and crawled into bed. My delightful spot in bed. 

     And that's how my life works. I can taken out by this weird medical anomaly for a few hours and I back to normal the next morning. I have a lingering headache but I think that's just because in the midst of being half dead I didn't eat anything. But I am still alive. This my friends is life. I made it through last night you can make it through today. 

With Love, 

Elizabeth 

*Check out my vlog from last night on youtube. You can click on it here.