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

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

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

The Hardest Decision

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

With Love,
Elizabeth <3

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

Controlling Anxious Thoughts

     Tonight I am letting my thoughts consume me. I try to not let this happen but there are times when I can't control it. And tonight, is one of those nights. Last Friday I was officially diagnosed with POTS, today I was diagnosed with plausible mastocytosis, and at this point I'm scared to find out what tomorrow will hold. One of my cardinal rules is to not google things until I am officially diagnosed and the doctor has already given me an overview as well as a treatment plan... I have been breaking that rule a lot lately and honestly, I think that's where a lot of my anxiety is coming from.
     I looked mastocytosis up online after the allergist called me today and put me on medication for it because he is 90% sure that I will test positive for it, and he doesn't want to waste valuable treatment time. We think this is what is causing my random anaphylaxis as we can't link it to one specific thing. There is no cure for this, I stumbled upon an article that says the average life expectancy after diagnosis is approximately four years. FOUR! I have since read more and talked myself off that ledge. A lot of the complications from this that I have found is people don't know what to do during the anaphylaxis part. I can handle the anaphylaxis part, it scares the shit out of me, but it's nothing I'm not equipped to handle.
     It's nights like these, when I am so consumed by terrifying thoughts that I can't calm down, that I have to solely rely on my Christ. I should always solely rely on him, but I strongly believe that he put medical professionals and medication on this Earth to help, but tonight is not a night that either of those are necessary. Tonight is a night when only he is needed. When the only comfort and solace I will find is his ever loving arms. I know that this will be a long and difficcult uphill battle and at this moment in time things are looking incredibly dim, but friends, I will make it through this. You will make it through what ever it is you are seeking solace from. We will make it through.
"Come to me all who weary and burdened, and I will give you rest" Matthew 11:28

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

Where My Brain Goes

   
     Doubt. Self doubt. Doubt about the future. Doubt about where my health is heading. Doubt about just life in general. Just doubt. It's just like anxiety, in fact it's fueled by anxiety. Your brain can start doubting something and then the anxiety takes hold of that doubt and runs with it. And trust me, anxiety runs with it fast. In the last few days I have had some disappointing news about my health. They won't confirm any diagnoses until I turn in my heart monitor in in thirty days. But they're theory is postural orthostatic tachycardia syndrome (POTS for short). They also said it may not be getting any better whether it's that or something else. As it is right now, even if I am only getting one thing at the store I still have to get a cart to lean on because my legs are to weak to stand on my own. I get so short of breath just having a long conversation even if I'm sitting during the conversation.
     My cardiologist said if this continues he's not sure if I can continue working. And my work is something I take so much pride in. I don't want to lose that. I know I can't let the worry consume me because God has everything in his hands. But that's a huge life change all at once.
     The other thing I worry about is losing everyone I'm close to. I've lost friends to health problems before it's just not something they can understand. It's hard for someone on the outside to understand what I'm going through. And that's fine, I can't blame them one bit for that. But I'm terrified to lose my roommate, my friends, and especially my boyfriend. I don't have a lot of family in Nebraska and if I lose them, I'm on my own. I'm left without a support system and health issues without a support system is a whole other struggle.
     The doubt of life is getting to me. My anxiety is getting to me. My brain is a black whole that never ends, that I can never calm down or shut off together. I just don't know if I can keep going anymore. It all got so overwhelming tonight that I got in my car and just started driving, and then I almost ran out of gas. So I stopped and got weak while pumping gas so I turned around and went home and just contemplated life in the parking lot and not on the interstate. But still, even with all the doubt and anxiety I will move forward. I will take life one small step at a time.
Philippians 4:13 "I can do all things through Christ who strengthens me."

With Love,
Elizabeth <3

You're Stronger Than What's Holding You Back

     That, that right there is how my Wednesday went. I got out of bed because I felt like I had too. That it was frowned upon to stay curled up in my cocoon and wait for a better day where I wake up feeling wanted and needed. But today was not that day. Today was a drag yourself out of bed day and hope for the best. I forced myself to shower, and get dressed. I set a small list of goals: laundry, moving the tubs in the living room to my garage, and starting the dishwasher. I can accomplish this right? Hahahahahaha that's funny.

 I started with the laundry. I got everything separated out into colors and what not and I started. Load by load. I felt overwhelmed. I haven't done laundry in quite a while so I had a lot to catch up on. I don't understand how I got over 8 hours of sleep last night and still have no energy for doing anything. Every step is like a brick weighing me down. Going up and down the stairs taking boxes to my garage was like climbing Mount Everest. I'm a generally healthy person but it took effort and energy that I just didn't have. I basically forced myself to walk to the mailbox. I was a little angry when I found it empty. I felt like I had walked all this way for nothing, what a waste of 10 minutes. 

     Then I went back to the laundry. Changed the loads and tried to muster up the energy to clean my room, or at least pick it up a bit. That's when it all came crashing in. Trying to make my bed it just hit me. I just started crying and couldn't stop. I fell to the floor and just laid there. Not wanting to do anything other than sit there and cry.                I picked myself off the floor when the drier finally buzzed. I got up and started another load because I had a goal and knew that if I felt this worthless right now, how I would feel if I gave up on the one thing I wanted to accomplish today. In the middle of folding laundry I got a call from my current therapist that she was going out of my insurance network. All of the referrals she gave me were also out of network. So there I sat, on the floor again trying to navigate my way through the insurance world to find a counselor that would take my insurance. I still haven't found one.

      I have given up on that search for now and will hopefully start again tomorrow. I'm extremely nervous that I will have to go without counseling for a few weeks which is one thing I look forward to because I know it will keep me going.
     Good news though, I finished the laundry. It's all folded and ready to be put away. That's my goal for tomorrow when I get home from work is to put all my laundry away. Tonight is work. I can do work, being an EMT and this job is actually something I look forward to. It's actually something I put under the "worth it" column.
     So friends, I want to encourage you to try to accomplish something today. Whether it's something big or something small try to finish it. You are stronger than what's holding you back I guarantee it.

With Love,
Elizabeth <3