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