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!*

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 

PICC Line Malfunctions

*Just a warning some of the pictures in the post will be somewhat nasty*

"The Lord delights in those who fear him, who put their hope in our unfailing love."

-Psalm 147:11

     I have a PICC Line. It is basically an IV that is inserted into my upper arm and is semi permanent. Because I have to have 24/7 access the PICC line was a great option for me. Last week during my dressing changed we realized I had started developing a reaction to the dressing, or tape we put over the line. My skin began blistering and draining, in all honesty it was miserable and gross. We were watching it closely for signs of infection but I never showed any. I never had a fever, my arm never swelled, the site never turned red it was just irritated. Well Saturday morning I looked at my site and it was super gross and nasty. This line leads straight into my heart. I was not about to take any chances on infection so I decided it would be best to take a quick trip to the ER. I should have known trips to the ER are never quick for me. 

That's what a blood clot looks like.
Terrible picture I know, but still
kinda cool.

     The triage nurse was extremely rude saying I was over reacting and it was probably just a skin allergy that was causing the drainage. I reminded her again that this line went straight into my heart and I wasn't willing to risk anything. She rolled her eyes and told me that I looked fine and they would probably send me home in a few minutes. I told her that would be fine if that is what the doctor decides is best. She also said that I should stop seeking attention by wearing a mask. I am immune compromised, I have ZERO immune system and I was not about to hang out in a hospital full of snotty flu humans without some sort of protection. Again, she rolled her eyes. 

     The nurse who has seen me before came and moved me from triage back to a room. The PA came in and looked at my line. She said it didn't look infected but she's also never seen a site with that much drainage. So she called over the ER Doc. I was worried because he's a new one I've never seen before. He took two seconds to look at it and said "something is definitely not right." He ordered several labs, cultures and lots of imaging. 

     First up was an ultra sound of my line. There was a student so it took quite a long time. We were chatting and then she went quiet and pointed to something on the screen. The actual ultra sound tech came over and typed something and then I was taken back to my room. That's when I knew something was wrong. The nurse came in to start a second IV he told me we were going to have to pull this PICC line which was fine with me at the time. They could find a vein to get a second IV they dug, I cussed, we all gave up. 

    The doc finally came in and told me it's confirmed two major blood clots. One was inside the line and wasn't occluding much, but the second was around the outside of the line so very little blood flow was getting past the clot which means the line had to go. Pretty immediately. The international radiologist came in to place a new PICC. He was the one that placed my very first one. He's the bestest. He pulled my old one and went to place the new one. They use an ultra sound to find the vein they are going to put it in. And even with ultra sound he could barely find the veins. That's when my once favorite IR Tech became my least favorite. He told me we had to place the new line WITHOUT lidocaine. He did it super fast but not without me cussing... a lot... like a lot a lot. 

     I was then started on a very high dose antibiotic Vancomyacin. It's biggest side effect was Red Man's Syndrome. Awful. That was over after an hour and we started a second one just to be sure. I was discharged later that night with an oral antibiotic and a very very sore arm. Thankfully I got news that my cultures had all come back negative which means the infection never reached my blood stream! 

     So that was my weekend. It was rough but I made it. 

With Love, 

Elizabeth <3 

A Letter To My Nurses

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

-John 15:12

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

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

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

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

With Love, 

Elizabeth <3 

I'm Just Done Fighting

   

     It's been a minute friends. I have tried to sit down and write several posts but there were just none I was passionate about enough to finish. I'm a bag of mixed emotions right now, and for good reason. I had two wonderful weeks of no issues. There was the occasional ocular migraine, or upset stomach after eating but I went two whole weeks without a hospital admission, without having to use an epi pen, without being stuck at home. And they were a great two weeks, probably one of the best few weeks I've had in over a year. I want to go back to those two weeks.
     Last Sunday I went to church and then went to Subway right after. Subway has always been a safe food for me. I get the same thing every time and never have any issues with it. A few bites in my throat started to feel scratchy and my whole body got hot and itchy. I remember trying to take benadryl but must have slipped into unconsciousness because I came to in the ambulance with the medics trying to start an IV and a needle being stabbed into my arm with more benadryl. They had already given me epi in the shoulder and my oxygen levels came up slowly. It's never a good thing when the fire crew (who has never ran on you) knows who you are because other crews talk about you at the station. They knew not to give me anything else until I woke up and could tell them what I can and cannot have. My body cooperated the rest of the ride. In the ER I had another reaction and another the ER doc said "it's not possible to have that many rebounds" I know better. I've experienced the truth of multiple anaphylactic reactions one right after another. They decided to admit me. The attending physician came downstairs and told me there was nothing else they could do for me.. There is they just refuse to consult my specialist. I decided to be discharged that night because there was nothing beneficial for me there if my doctor wasn't willing to actually help me.
     The very next day I started feeling short of breath and it got extremely hard to swallow. I hadn't eaten anything that day so I don't know what could have possibly triggered it, but either way it was happening. I was home alone so I tried to call my mom my phone must not have been working because I tried to call her and my dad and all I got was "Verizon can't complete your call please try again later" so I pushed the "help" button on our GPS app. I don't know what happened after that. I don't know how 911 was called, because it sure wasn't me, but they were. They arrived and I was face first on the floor. Yes, I was at least breathing more than 3 times a minute this time. They loaded me in to the ambulance. A few minutes later the medic looked at me and said "this isn't anxiety is it?" I nodded my head no. He looked at my oxygen level which was now dipping into the 70's. He gave me a round of epi in the shoulder and 50mg of benadryl through my PICC line. I was struggling to breathe my breathing became so labored that I was starting to zone out. He started bagging me, which is basically him breathing for me, and they turned on the lights and sirens. When I got to the ER they immediately decided to admit me.
      9 hours later I was still in the ER, they told me it would be 34 hours before they could get me a bed upstairs. I gave up. I had nothing left to give. I was extremely itchy since the first benadryl wore off so I asked for more. My entire body was red and splotchy and there were hives on my chest. The nurse said she'd be right back with some and I didn't see her for another hour and a half. I decided to sign AMA, against medical advice, and have a friend drive me home. My mind was, and still kind of is, in a dark place. There are still people out there who thinks this is just anxiety or that I'm doing this for attention. That there is no way a 21 year old could be this sick. I can tell you every time I go into anaphylaxis I have to make the decision of staying and fighting or closing my eyes and letting the darkness consume me. I honestly think that's why I've been found unconscious so many times this week. Is I've given up the fight. I don't run to my epi anymore, if I get to it I get to it. I don't stay at home where it's safe anymore and I certainly don't wear my mask outside like I should. I've stopped fighting. I hate saying that out loud but it's true.
     I had a doctor's appointment yesterday to go over lab work. I came back positive for the gene mutation that has been found to cause MCAS, and one of my prostoglandin reports came back 4x over the normal limit. The specialist my doctor was consulting in New York says it's time to switch treatment options. Neither of which I'm thrilled about but one option has an incredible success rate in decreasing anaphylactic reactions from multiple times a week to once every few months. But it's still a newer treatment option in the medical world and all of my doctors are pretty nervous to start it. My take on it is there's no way this option could make anything any worse. Why not just try it? I want nothing more than to go back to school right now. Not even work, I just want to go back to school. Where I can meet other people my own age but I can't right now. I have a dismal quality of life right now. Wouldn't we want to try everything we can to fix that? To make it so I'm not in the hospital multiple times a week? I'm just so frustrated. Doctors are giving up on me, friends are giving up on me, I'm giving up on me.
     So I'm praying for strength and peace. Because no matter how tired I am or frustrated I am God's got it all planned out. He'll put me in the right hands and he'll get this figured out. "Tell everyone who is discouraged, be strong and don't be afraid! God is coming to your rescue." -Isaiah 35:4

With Love,
Elizabeth <3

A Health Update

"My flesh and my heart may fail, but God is the strength of my heart and my portion forever." -Psalm 73:26 

     Today was my allergy appointment. It was follow-up from my week long hospital stay last week. If you hadn't heard I was once again admitted into ICU last week. I was on a continuous epinephrine drip for three days before I was tapered off of the drip and moved out of the ICU. I stayed in the hospital for two more days before they let me go home. Even though I've been out of the hospital I'm still having daily anaphylactic reactions. Today's appointment was to come up with a game plan. Or at least work on coming up with a game plan. 

     The appointment was very productive. We have decided that because steroids are not helping my symptoms at all it is no longer necessary for me to be on them. Which means once I finish this prednisone taper in 10 days I will officially be steroid free! We also started the process to get approved for the Xolair shot! Xolair is an injection used to treat patients with chronic hives but it has also proven to be very successful in treating patients like me with idiopathic anaphylaxis. Once approved I will get a course of at least three injections spread over a couple of months. It won't make an immediate difference but the hope is that over the course I will begin to have less and less anaphylactic reactions. There are risks to this as with any treatments but we have decided that the possible benefits outweigh the risks. I will also be monitored for several hours after receiving the injections for any negative affects. 

     We are also covering all of our basis. I will be making an appointment with an ear, nose, and throat doctor to rule out any other possible causes for my anaphylactic reactions. We want to be sure that it is not an upper airway obstruction or lesions causing my difficulty breathing. Although unlikely we want to make sure everything is covered. My allergist will also be reaching out to an expert in Mast Cell Activation for further guidance in treatment options. Our hope is that the fresh eyes will bring new ideas to my treatment plan.

     I am still struggling everyday with reactions. I am losing safe foods more quickly than I ever have before and I'm having more severe reactions to environmental triggers than I used to. I have a feeling it's still going to get worse before it gets better. But we are on the right track. Please keep me in your prayers over the next few weeks as I try to continue to sort everything out. I will try to post updates here as often as I can. If you have any questions about mast cell or just questions in general please reach out! Thank you for coming along with me on this journey! 

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

She Told Me This Is Going To Kill Me

      This picture was taken back when I went to Vegas last month. I challenged myself to go hiking, not my smartest decision I know, but I love hiking and I wanted to prove to myself I'm not going to let anything stop me. So I did it and this was my victory picture. What you don't see is the before this picture. The 100* weather, the heart rate of 190 for most of it, the having to stop and sit every 5 minutes, the six times I nearly passed out, and the three times I actually did. This was right when my health really decided to take a turn for the worst. For me, this was a documented picture of the beginning of the end. I want to go back to how I felt in this picture.
    You see, a week before this picture I was diagnosed with Postural Orthostatic Tachycardia Syndrome (POTS) and a week after this picture I was diagnosed with Mast Cell Activation Disorder. I'm currently in what doctors are calling a "flair" of my MCAD. I have been in the hospital multiple times for anaphylaxis that has nearly killed me. One of my visits had sent me to the ICU for a couple of days because I was just so unstable. While I was there my doctor came in and said those life altering words. "We don't know how else to treat you, but eventually this is going to kill you, we just hope it's not soon." Who wants to hear that?! Who tells someone that news in that way?! I try to fake my way through this illness all the time. And I know I do a pretty good job of it when people tell me they think it looks like I enjoy being sick. I don't, I hide the endless nights crying myself to sleep, the constant prayers to God to change something... anything. I don't know why this is happening to me. I don't know why he has put any of this in my life and I hate it. I've had multiple yelling matches with my wonderful creator asking why me, what did I do to deserve any of this? So I sat there and swallowed that awful news and put on a brave face in front of the doctor. I didn't want her to know how broken I was inside at that moment. As soon as she left I lost it. I started crying completely alone. And I didn't stop crying until my heart rate got so high that I passed out. I cried myself to unconsciousness over what I just heard. I'm not scared of dying, that's not what scares me. It's a part of life. It happens to everyone and I know that through my awesome and wonderful God I have an eternal home in heaven. So it's not dying that scares me, it's the fact that THIS is going to kill me. That I could go because I can't get to my epi pen fast enough. It's the fact that I have something so rare and so new to the medical field that my doctors are SCARED to try any aggressive treatments. And she dropped such an atomic bomb like that and then released me from the ICU and sent me home where I am alone most of the day. Where I'm not hooked up to monitors 24/7 that detect what my body is doing before I do.
     There; in that hospital room is where I realized this is going to be a life long struggle until it eventually kills me. There is no cure. There is no out. I would love to sit here and write to you that I have moved past this moment in life. That I'm back to being able to hide my illness and living life to the fullest, but I'm not. I'm still struggling through that news, that realization. But, while I'm struggling through this I am still finding strength in my Lord.
"Even though I walk through the valley of the shadow of death, I will fear no evil, for you are with me; your rod and your staff, comfort me." Psalm 23:4
     I will continue to fight this and battle with doctors about treatment options and try everything I can to get ahead of these diagnosis' and I encourage you to do that as well. Where ever you are in life, keep going. It's a dim light but there is definitely a light at the end of this dark and twisty tunnel.

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

Allergic Reaction in the Movie Theater

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   I had a weird allergic reaction at the movies yesterday. I was fine until about 30 minutes after the movie started and I started to get extremely itchy on several places around my body. I was so itchy I actually left the movie and went to the restroom. I tried just wetting down a paper towel and rubbing it on my legs to see if what ever caused the itchiness would come off. But after a few minutes of that my skin began to sting and turn bright red and splotchy! There were hives all over and I just didn't look good. I wanted to go home and take benadryl but the whole family was at the movie and no one wanted to leave to take me home. I was miserable.
     When I finally got home I took a benadryl and hopped into the shower to see if maybe that would help... nothing. The hives spread further down my legs and arms, and my chest started getting red and blotchy. At no point did I feel like I was going into anaphylaxis but it's still scary. I ended up taking two more benadryl and letting myself go to sleep. I woke up a few hours later a bit nauseous and still blotchy red, but at least a majority of the hives and itching was gone which was nice.
     It worries me that what ever my reactions are are actually getting worse and it's getting harder and harder to treat them quickly. It's frustrating not having answers. My allergist's office is closed today but I'll give them a call tomorrow and see if he has any ideas on what could have caused such a reaction and if there's anything I can do to prevent it. Until then I'm just praying I can keep everything under control.

Idiopathic Anaphylaxis?!

          Today I had an allergist appointment. I was actually super excited about today's appointment because I was looking forward to getting a second opinion on what has been causing all of my anaphylactic reactions as well as getting a pulmonary function test, which I've never had done before. This doctor was beyond amazing. He actually took the time to fully understand all of my symptoms and every reaction that I've had since August. He also took the time to call my current allergist in Nebraska so they could consult while I was in the room. I couldn't have asked for a more thorough appointment. One concern this doctor expressed was my symptoms matched eerily close to a textbook mast cell activation case. So he ordered a blood draw that will show preliminary results for that. I haven't had a chance to look up what mast cell activation actually is, but he said I really didn't need to start worrying about it until we have these blood results back. So hopefully within a week or so we'll know where I stand with that. But, I will cross that bridge when I get there. Right now I have other things to worry about.
     We also did a quick skin prick test for a cinnamon allergy which is what my doctors back in Nebraska kind of linked my reactions to. The skin prick test wasn't nearly as daunting as I expected it to be. They did a positive control test, a negative control, and the cinnamon slurry. I reacted as expected to the positive control test which means it swelled up as well as became extremely itchy. My cinnamon test became red and what looked like hives developed around it but there was no itchiness. So we had to rule this test inconclusive. The doctor told me to try to stay away from it as much as possible, but the cinnamon probably wasn't the root cause of my anaphylactic reactions. So at this point he decided I have idiopathic anaphylaxis which means we don't know exactly what is causing my reactions but I am still having life threatening anaphylactic reactions.
     The plan for now is to wait on the blood draw as he thinks the mast cell activation may be causing my body to give itself anaphylaxis. If that blood draw comes back normal than at that point we will discuss doing further allergen testing. Even though I didn't leave the office with set in stone answers I feel confident that someone is listening to me, how I am feeling, and what I am going through. I think this doctor is definitely on the right track and I am looking forward to working with him more to figure out what is the root cause of all my allergy dilemmas.

With Love,
Elizabeth <3

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