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

Why I Refuse to Be "Sick"

     Yes, I am sick. Yes, I have been told that unless we gain control of what is happening in my body I will not live a full lifespan. Yes, it sucks and I am constantly living in fear. But the thing is, I refuse to fall into that "sick" role. I'm back in the hospital... again. But I don't want to sit in bed in a hospital gown and be sick. If they allow me, I get up and put on normal human clothes. Of course they're comfy clothes like sweats or my favorite pair of pajama shorts. In the morning I keep to a routine as much as I feel I am able to. I put on makeup and brush my teeth, shower, and change. Because if I let myself fall into a sick routine I find myself falling into a sickness depression. 

     I refuse to let my limitations stop me from going out and enjoying things. Of course I wear my mask because that helps keep me safe, but if I want to go out kayaking with people I won't let anything stop me. Of course there will be days when I am physically incapable of doing anything. Where I have to stay in bed and hope that today isn't the day the Lord takes me home. But on days where I can I get out of bed and participate in society. I do my school work and try to manage life. Because I refuse to let these random illness define me and take my enjoyment out of life. I refuse to be "sick". 

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.

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

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

My Week In Pictures May 14-21 2017

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

The Daily Climb May 14th-21st