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Sunday, November 9, 2014

Knowing when to quit

My life has been crazy. I married a man three weeks after I meet him. After fifteen years of verbal abuse, I divorced him because his drinking made my life a living hell. His constant accusations of infidelity drove me to point that I started thinking that the world would be a better place without me. So much so, that I contemplated suicide on a daily basis. All of this was before my diagnosis, all before my life changed.

After realizing that I had done nothing wrong other than love him and try to please him, I realized that it was him, not me. Well, I made the bold step of leaving him. We divorced, and I moved on. Or so I thought.

After a few years, listening to my son tell me he was a changed man, I decided to give him another chance. While we dated, he truly seemed a changed man. So...against my better judgement, I tool him back. We were remarried on what would have been out seventeenth anniversary.

Life was wonderful for a while. Then, things started to not add up. One night, he was walking across the living room, and feel flat on his face, sound asleep. My first reaction...smell his breath. Minty....

Then I walked into the bathroom only to discover the mouthwash I had just brought home that evening was almost empty.

The next day, I confronted him and he admitted that he drank the mouthwash to get drunk. He had never stopped drinking. It was all a lie. He promised to stop, and I believed him. Fast forward to this year...passing out on a daily basis became the norm for him. A gallon of vodka would last about a day.

A few weeks ago, I called him while at lunch and told him if I found him drunk again, I was done. He had used up his second chance. I came home that night to find him passed out.

The lies, the sneaking, the manipulation...I couldn't handle it anymore. I told him we were through.

He refuses to leave the house. He claims he's getting help, but in my heart, I know it's just to get me to put my guard down. I can't trust him.

What does this have to do with my disease? My only trigger is stress -well, the only trigger I have found so far. I come home, and I feel my throat constricting. Does he care? No. He's accused me of faking the disease for attention. How do you fake your throat swelling shut? You can't.

My life will be in turmoil for a while now. My prayer is that this isn't the thing that takes my life.

I am stronger than this. I can do this. Right?

Wednesday, August 27, 2014

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?

Wednesday, August 20, 2014

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.......

Tuesday, April 8, 2014

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.

Wednesday, February 26, 2014

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!