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
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