Silent Savsana

     I might have self invited myself to Silent Savasana. It was a free yoga class held by the pool at Red Rock Hotel and Casino in Vegas. I am always looking for fun free things to do. It's even better if it doubles as a workout class that I'm able to do! I had so much fun! I met some family and friends there and none of us really knew what to expect. I was completely lost wondering around the hotel in work out clothes and a yoga mat. I felt so out of place but once I finally found everyone and got settled in it was super enjoyable! The weather was really nice for Vegas standards and the sun was starting to set so it ended up not being bright or to hot which I was really worried about. I'm trying to work out more. Not to lose weight or anything, although that would be a nice perk. But just to keep my heart healthy and my body healthy. I can't run or walk long distances so I'm always looking for better ways to stay healthy that are "easy" for me or that I can do without passing out from my POTs. I'm so glad I was able to find this company. Right now I think they are just in Vegas but they are trying to expand. Check them out on FaceBook!
     What ever your workout goals may be this week you can do it! I did and I don't even have workout goals. :)
With Love,
Elizabeth <3

I Am Allergic To Benadryl

If you don't know I have Mast Cell Activation Disorder. Which means at some point in my life I will become allergic to everything. It sucks and I hate it but it's a fact of life that I face every day. So much so that I take 50 mg of benadryl every four hours to keep symptoms at bay. This is causing me to be sleepy. All. The. Time. But because of this disease if I don't have name brand benadryl and not the "allergy relief" brands I am okay. Because the way the medication is compounded I am allergic to. So if all you have is benadryl and it's an allergy relief brand I will take it. Because it doesn't affect my body enough that I'll care. However; knowing this about myself I do make life threatening decisions every second of every day. Here's How. 

I AM Allergic To Water 

Knowing this about myself sucks. I am so hyper aware of everything all the time that I question if the water I drink will cause anaphylaxis. I love certain brands of water and I refuse to drink certain brands like Arrow Head. I don't know how I decide which water to drink and which water not to drink but I know that I hate Arrow Head so much that I wonder if it's causing an allergic reaction. And I know that I like water from a Britta filter so much that I wonder if it's because I'm not allergic to it. I also wonder if this is a big reason I love swimming but don't go. There are some pools I'm in that I get so itch and red I wonder if I'm allergic to the chlorine. Which is why I think I've had so many severe reactions at Wet N' Wild I refuse to go there because I wonder if I am so allergic to their chlorine it's affecting me I have to go to the hospital. But I wonder if I were to go to another water park I'd be 100% fine. 

Sleep Is A Trigger

I am not allergic to sleep. But sleep affects my life so symptomatically that I am. Because I sleep is such an allergy symptom relief for me I feel like if I just go to bed for a few minutes I'll be fine. That lack of sleep and sleep exhaustion makes it look like I'm drunk. So if my symptoms are bad the likelihood is that I am so exhausted and dehydrated that I look 100% normal if I haven't slept a solid amount in the last month. So if I ever seem drunk, high, or tired. Tell me so I can go sleep for a few hours. 

I Hate Unfamiliar Social Situations 

I want to go to church and youth group so bad but have never found one accommodating symptom wise that I have never gone. Now that I know this there were several places I felt safe enough to and never gone and I regret that. So if you feel comfortable handling something if it were emergent please let me know. Because I probably want to but symptom wise I am not because I don't feel safe there. 

Life with this disease is a living hell. I can't explain that to people. But I wouldn't wish it on the worst person. So please take that into account if I cancel plans. 

With Love, 

Elizabeth <3 

Ephesians 2:5 

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

Health Update

HEY FRIENDS!! I know every time everyone sees me they are excited because I'm alive. Not a single person knows how it's physically possible right now and I am so excited about that. And for that reason I'm alive. But I have seriously no idea physically how I'm doing. Physically symptom wise I'm doing terrible I feel like I'm twitching in a hole somewhere. But at the end of the day it's how do I feel. Mentally I'm doing great! I couldn't tell you what's different but I've realized something life changing. For the first time ever my health and anxiety are the same exact thing. And for those of you who have been with me regularly know what that looks like. I can't describe it to a damn person in my head but I've figured it out. So treatment wise and prognosis wise I'm thrilled beyond belief!!!! However my brain is still trying to catch up with that mentally and it's just so much to handle that I physically not able to. And that's okay. So I do know immediate treatment plans. I do know that right now everything physically is staying status quo. Medications are the same and will continue to be the same emergency wise for a while. Up to a year that I know of right now. So if you know anything life threatening wise as far as when I use my epi pen please please please suggest it should you think I need it. However; day to day medications may change quite a bit. However; mentally I'm viewing my disease backwards and I'm excited! My hope currently is to live it that way too. By knowing what I know now and working backwards so if weird life changing things happen that's most likely what it is! And that's so exciting! So that's where I am please feel free to contact me with any questions but just know if I don't reply I'm most likely alive and if you know of someone who has asked and hasn't seen this update please share it!