tmsforacure.org

For those of you reading this who don't know why I post about idiopathic anaphylaxis, it's because I have a mast cell disorder. In my mind, it's not a disorder, but a disease that I worry will one day be the cause of my passing. I encourage everyone to look up mast cell disorders. It's hard to diagnose, it's hard to find doctors who acknowledge it, and it's even harder to be treated for it.

Let me explain.....

Each person with this disease has different symptoms. Each person with this disease has different reactions. Each person with this disease has different triggers (the cause of the episodes). Some doctors don't know what it is, so they try and convince the patient that it is something else that they can explain. I suffer from idiopathic anaphylaxis. I go into anaphylactic shock without being exposed to something I'm allergic too. The only thing I am truly allergic too is bee stings, yet I have gone into anaphylactic shock from just taking medicine....from antibiotics to Claritin. Unfortunately, I have also gone into anaphylactic shock from not taking medicine.....and I still am not a hundred percent sure what caused the episode. For those of you who don't know what anaphylactic shock is, in my case...it's traditional anaphylaxis. For others who suffer from a mast cell disorder, their anaphylaxis may not close their airways, but reek havoc on their digestive system, and other things. Since mine is traditional, let me describe my first episode:

I was at work, feeling fine - trying to get over a sinus infection and had just taken my antibiotic - one that I have taken many times in the past. As I sit at my desk, I suddenly feel impending doom. Something isn't right, but what I can't say. My face begins to feel flush and I feel like someone is sucking the air from my lungs. I go into the restroom to splash cold water on my face, and when I look in the mirror, I see that my face and chest is blood red. I put my hand to my chest and I feel like my skin is about to explode into flames it's so hot. With each breath it becomes harder and harder to breath. As I walk back into my office, my boss looks at me and just seeing the shock in his face makes me realize it's worse than I care to acknowledge at the time. I feel my legs getting heavier and I begin to feel pressure in my chest. It feels like an elephant is slowly crushing me. As I reach into my purse for my epi, I feel my throat beginning to close - I can feel the sides of my esophagus touching, and I hear the whistle coming from my mouth with each tiny breath I attempt to take. I take my epi out and jab it into my thigh, and within just a second or two, I feel the ability to breathe on my own again. As my boss rushes me to my doctor, while still in the car, the inability to breathe comes back, so I take out my second epi-pen and use it once again. When we arrive to the doctor's office, I am back to being unable to breathe, and I can no longer walk, as there is no strength left in me. I don't remember much after that, but I woke up at home with my kids sitting by my side telling me it would be ok. I don't know how long I was out, and I don't know what I would have done had my boss not taken me to my doctor. After that, I began carrying three pens minimum with me, since I barely made it to the doctor before the third round hit me. My experiences are usually the same with each episode, but each time, the epi works less and less, and I find myself using more before I make it to medical help.

The ice bucket challenge for ALS was a great way to bring awareness to that disease. Pie in the face is our way of bringing awareness to our struggle. It's our battle and we need help. Will you accept?

Life in all it's craziness

I've gotten away from blogging because life has been crazy. But isn't that the case for everyone? Life seems to get in the way with life. But we deal with it. Or at least we try to deal with it without going insane. Dealing with the issues of life sometimes makes me want to scream. Some of those things are good, and some are bad. But when things start to just stack and stack, it's enough to drive anyone crazy.

This year has been very trying to me and my family. My son has cyclical vomiting, and missed so much school, I ended up pulling him out to home school him. The school district's response? Let's sue her for being a bad mom. My son's truck broke down and we took it to a shop to get it fixed. The shop's response? Let's screw her for being a woman. I started having issues with my foot to the point where I couldn't even wear shoes. The doctor's response? Let's do everything we can to avoid surgery (finally someone not trying to screw me over!) The outcome? Surgery. My husband got sick with a high fever and refused to go to the doctor. His body's response? Pnemonia (and then four days in the hospital)! My daughter had stomach issues for months and wouldn't go to the doctor either. Her body's response? Extreme pain until she finally caved and went to the ER. Emergency appendectomy.

Through all of this, I had to keep in the back of my mind....don't let it stress you out. Since stress is one of my triggers for IA, I had to force myself to relax. Do you know how hard it is to make yourself forget that life is beating the shit out of you? It's like trying to sunbath in a bikini at the north pole! You never really accomplish it because it's just too hard to push out the thoughts of the outside forces beating you down.

I need a vacation.......