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.......

Triggers here, triggers there, triggers everywhere!!

Knowing that my main trigger is stress, I got comfortable. Tried to keep my stress to a minimum. Then spring happened......

My house use to back up to a plot of woods....notice I said use to.....

A couple of months ago, my neighbors and I started noticing that there was some heavy machinery at the end of our street. Then one day, I came home to find there was a dirt road at the entrance to my road. Being the nosy person I am, I started walking through the woods to "investigate" what was going on. As I'm walking, I come to an area that had been cleared....it was a new road that ran parallel to my street. I was upset! I bought my house because I didn't want any backdoor neighbors! I was told that the landowner would never sell it! Ugh!!!

About a month and a half ago, on a windy Sunday evening, I noticed a lot of smoke coming from that area. I went out into my backyard, peeked over the fence only to see a bonfire going, that also engulfed a tree. Ok.....so I look around to make sure someone is watching it. Not a soul in site. I debated and then discussed with my husband on what we should do. We decided that with the wind, it would be best to call the fire department. So I did. They came out, quickly put out the fire along with the burning tree. This became a Sunday night ritual for over a month. Every once in a while we would see the fires during the week, and eventually someone would call the fire department. But I've noticed that lately I have not been feeling very good. Coughing fits when I should be just fine, the rash on my chest that re-appeared when the fires started, and the tightness in my chest that is "just" there....not enough to make me take my epi, but just enough to keep me alert.

Now comes the task of wondering.....what is causing this? My husband and I have fires in the back yard in our fire pit all of the time.....and we use limbs from our tree that have fallen out. Is it the underbrush that they are burning? Are they burning something else that I just can't see? Or is it just because the pollen level in my area is extremely high? UGH!!!!!!! I wish there was a book that could explain it all!

Encouragement for April!

Don't let the doubt of those around you make you doubt yourself. You are stronger than you realize and this too shall pass.

This is what I have to tell myself a lot.

Encouragement for the day!

Renewing old friendships

Growing up, my best friend in the whole world was actually the daughter of my mother's best friend. We shared so many things together and no matter what, she was always there for me.

Then life happened.....I got married and had a baby....she got married and had a baby....and we drifted apart. A few other things transpired....nothing that I want to mention, but it ended with her going her way, and me going my way.

For years, I wondered how she was, if she was happy and what her life was like now. I searched the wonderful internet in an attempt to find her, but to no avail....until yesterday!

Once I found her, it was with immense amounts of fear that I sent her a text....only to be surprised, that she is open to repairing our friendship.

I think about life and our ups and downs. How we grow away from some friends, and then others are always there. Letting go of people hurts us sometimes, but it is for a reason that we aren't a part of their lives for a time. I'm not saying that my friend and I will pick up where we left off, but then again, we may. Realizing that you can't judge a person because you don't know what they have been through is very important. Just like someone not judging you because they don't know your entire story. Life is difficult, so when you take a step back, look at those you lost for whatever reason (meaning the ones that haven't hurt you) and trying to build those bridges again can be a blessing in your life. Take a new perspective on life and try and empathize with those around you. You don't have to understand their decisions, and their choices, but being a true friend is about learning to disagree and accepting those little things you can't stand about the other person. You will never see eye to eye on things, but if you try and understand their point of view, you may realize that your thinking is sometimes not always right!

Is it or isn't it?

Living with a mast cell disorder, I personally wonder about everything....is it because of the mast cell thing, or is it something else?

I was born with dark auburn hair. Not quite red, but not quite brown. As a child, I hated being a red-head (because auburn is considered red hair in the eyes of the world) because having red hair was not cool....you had to be blonde to be important....I tried everything to dye my hair blonde...all I got was orange. I even stripped the color from my hair so that when I put the color on, I would have beautiful blonde hair! Except that time, it turned glow in the dark neon orange......so I gave up. I remember when I was in fifth grade, one of the teachers approached me (she wasn't my teacher) and she just went on and on about my hair. The following Monday, she came to school with RED hair! Now, in my little 10 year old mind, I knew that she was trying to be like me, and I wondered why she was that crazy. Who in their right mind would want red hair?? As I got older, I became proud of my hair being so unique. I would have women come up and tell me what a beautiful shade of color it was, and I would just have to say thank you, this is my natural color.

About ten years ago, I started noticing that there was a spot on my scalp, just along my right temple that just starting itching....all the time! I soon learned that I could only use a shampoo for about a month before it would make my temple itch like crazy. One day, as I was brushing my hair, looking into the mirror, I noticed that in that spot, the hair looked a little lighter....I just shrugged it off thinking it was just the lighting in the bathroom.

Now...I am not a vain person, and I actually despise my looks. Every time I look in the mirror, I think I look like a man in drag. I know that sounds horrible....I have a long narrow face...not something you see very often on women. When I have my hair cut short....I really look like a man in drag....seriously.....That's not me being self-conscious, I've actually had people tell me that. Well, maybe not tell me, but agree with me when I say it.

So....back to my story....since I really don't care to look at myself, it took me about a month to really look in the mirror again. My "itchy spot" - the hair was completely blonde. So, here I was with dark auburn hair and a blonde streak at my temple. It actually looked kinda cool! Trying to figure out why my hair was doing that, I convinced myself that it was a bizarre birth mark that suddenly "activated" when I was in my mid-thirties. Because, what else could it be???

Well, my cool blonde streak - ten years later - I have blonde hair......my whole head. Now, I will admit that some of it is white (red-heads don't turn grey - they turn white) but for the most part, my hair is blonde. I even have my family accusing me of dying it blonde. In reality, I've been trying to dye it back red! I asked my doctor once why my hair was turning blonde....he said it was from the sun. Really?? Because I don't really go into the sun a lot.

What I am now wondering....is this from my mast cell disorder? Or is this just a freak thing? Or is it from something else? Having this "problem", not knowing how it will affect you, not knowing a set of symptoms (since everyone is different) and not knowing what causes it....every time something happens to me, I wonder if it is because of the MCD.....

Maybe science needs to take our bodies when we die and test us...maybe they will find a cure....maybe they will find what causes it in the first place and keep it from happening to other people....wouldn't that be amazing???!!!!!