Am I A Leaker or A Shocker?

During one of my
"shocker" flares.

 When you're diagnosed with this disease they educate you on the important things. Rescue medications, how and when to use the epi pen, when to call 911, when to go to the ER, what medications and foods to avoid, what can possibly trigger a reaction, list can go on and on and on. They prepare you for the big stuff, the life threatening stuff, what they don't prepare you for is the other stuff. Yes, MCAS is a blood disorder which means it will affect every inch and every organ inside you. I've been doing better the last few days. My anaphylactic reactions have decreased significantly. And I am so happy about that. But now all of my symptoms are leaking symptoms. I'm not sure which ones I hate more.

There are those that are shockers:
These people are those that have minimal day to day symptoms. Their reactions are almost always anaphylactic in nature. Their reactions come fast and hard. They majorly affect respiratory and cardiovascular organs. They usually need epi and a trip to the ER all the time.

Stuck in bed because
moving makes me
nauseous. 

There are those that are leakers:
These are the people with delayed reactions. And/or 24/7 symptoms. Their symptoms aren't easily fixed with benadryl and a shot of epinephrine. It's hours of plaguing symptoms with minimal relief. You can try the benadryl, the heating and ice packs, tylenol, and epson salts but they will likely give minimum to no relief.

Then there's me: 
I am both a leaker and a shocker. As you've seen in the past weeks I have flares of being a shocker. Where epinephrine is my life line that I depend on almost as much as I depend on my Jesus. Flares where the fire department is called to your limp almost lifeless body more than once a week and they know you by name and know your disease and emergency protocols by heart. (Thanks guys, Those cookies I  keep promising are coming your way as soon as I am able to.) Those are the scary weeks. Then my shocker flare fades and I go back to being a leaker. I think leaking symptoms take more of an emotional toll than shocker symptoms do. One of my leaking symptoms is bone pain and all over achyness. My pain and stifness will be so bad that walking to the bathroom or kitchen will leave me in tears. The general malaise feeling is overwhelming. There's so much I want to accomplish in a day but I just can't muster up any energy. And when I do have energy it only lasts for a few minutes and then *poof* it's gone. The fatigue is unbearable. I can get 8-10 hours of solid uninterrupted sleep and still almost fall asleep while standing up. But getting 8-10 hours is difficult because the pain and muscle twinges keep me up tossing and turning until I can find a comfortable position.

 Last night I  woke up around 2am with the worst chest pain I have ever had in my entire life (and that's saying a lot considering the chest pain I get after IV epi). Any time I took a deep breath in my body would literally scream and wish it were dead because my chest pain was so sharp and crushing. I had to resort to shallow breaths trying to calm the pain. And then it got worse. My pain started to move. Now not only was I experiencing the worst chest pain in my entire life but there was no excruciating pain in my right shoulder and lower back. I didn't think this was possible but the pain in my shoulder and back started pulsating with my heart beat. It's hard to explain but every time my heart would beat my pain would be worse. It was the worst most intense pains I think I've ever had. I can only take Tylenol and I didn't have any here. And with this pain I was in no condition to go and try to find some. I had no idea what was causing everything so I said "screw it" and took 50 mg of Benadryl and 20 mg of famotidine hoping that if this was cause of a reaction these to h1 h2 blockers would at least dull the pain. And I also took a Gas-X because I don't know it seemed like a good idea. I don't know what helped but after about 30 minutes of lying in bed trying to choke back tears because breathing was to excruciating the pain finally dulled to a dull roar. I was able to fall asleep. I still don't know what happened but I'm guessing it was just a leaking reaction.

They don't tell you about the leaking reactions when you're diagnosed. Mostly because doctors just aren't educated enough to know there's a difference between a leaker and a shocker. And that you can be one, the other, or both. I'm hoping my leaking reactions will start to subside like my anaphylactic reactions did so I can go back to a normalish life. Right now I feel like a slug who is stuck inside. And inside in just not a fun place. Are you a leaker or a shocker? Let me know in the comments below!
"For God so loved the world that He sent his only begotten Son, that who ever believes in Him shall not perish, but have eternal life." -John 3:16

With Love,
Elizabeth <3

For more information on being a "leaker" versus "shocker" click here.