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?

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???!!!!!

My prayer for you

I offer this prayer for you:

Lord, I thank you for the life you've given me, even though I struggle at times. I thank you for each moment you allow me to have, even though you don't promise me any. I thank you for the knowledge you give not only to me but to those around me so that we can deal with life's imperfections together.

Lord, I pray that for each person who is reading this that you move in their lives in such a way that they cannot deny the power that you have. I pray that you give them the strength that they need through the struggles you allow in their lives. I pray that you guide them to others that will not only lift them up, but give them comfort and guidance through whatever trial they may be dealing with.

Lord, you are the Great Healer. The One and Only, The Almighty God and Savior. Thank you for each second you allow us to walk this world. Thank you for Your unconditional love.

In Jesus name I pray

Amen

Life is looking up!

2013 was hard. 2014 started off looking really bad, but....things change!

I decided that even though the year was starting off bad, I would not let that determine my outlook on life. I have a man that loves me unconditionally and makes me feel smart, beautiful, and like I am the queen of the world. That in itself is one of the most amazing feelings a woman could ever feel. He's been my rock for 21 years. Don't get me wrong...we've had out ups and downs. We spent 2 years apart and even though I've always heard that a separation is a death sentence for a relationship, it saved ours. It gave both of us time to realize what we truly wanted in life, what we could and couldn't deal with from each other, and it made both of us realize that we couldn't be without one another. But then again....we are somewhat unique.....we got married 3 weeks after we met. It was love at first site and the first time I looked at him, a voice in my head told me that he was the man I would spend the rest of my life with. I know that sounds kookie, but it is the truth!

I have decided that no matter what curve ball life throws at me, I am determined to find the silver lining.

My year started off with the swine flu....the positive that came from that.....the company that I work for finally realized that what I do is important and there isn't anyone who knows how to do what I do. When I returned, I was advised that I would be transferred to our main office so that in the future, I would have someone there to cover me when I am out! I've been waiting five and a half years for that!!!

My son's engine in his truck blew up in the beginning of December....the positive that came from that...once we get it back from the mechanic, he will have a brand new truck! Major damage was done to several parts under the hood when the rod blew through the top of the engine block. Yes it's costing us an arm and a leg to get fixed, but hey.....a new truck for $6,000....you can't beat that!!

My husband falling off the ladder....the positive that came from that....he now realizes that he is no longer 17 years old, and that he needs to take care of himself. When we went to the doctor to get his back checked, his blood pressure was high. Really high.....150/128. The nurse and doctor didn't seemed too concerned with it since they knew he was in immense pain. But now he is concerned. He wants to go back to the doctor when his back is healed and have them check his blood pressure again. He hates doctors so this is HUGE!!!!!

My son finally got his cyclical vomiting under control and is back in school and doing great! He's an amazing kid and he doesn't let his disease get him down! I'm so proud!!

My daughter and her husband have been struggling financially, so I decided to start buying her small bead kits (since she loves to make jewelry) so that she could put them together and sell them to help make ends meet. She's so sweet and talented, and she just doesn't realize what an amazing woman she has become. She's given me the best grandson a grandma could ask for! He's three and can read! And I'm not talking about small words! I'm talking about he can read pretty much anything you put in front of him! He knew the entire alphabet and numbers by sight by the time he was two!! (I think he takes after his meemaw - ME!)

I read (on a FB group I belong too) other people's struggles with their mast cell disorder and I realize just how blessed I am. Most are to the point where they are almost always confined to their homes - prisoners of this disease, and I realize that I can go pretty much anywhere, smells don't bother me, I take a minimal amount of meds in comparison to them. I am blessed beyond measure! I don't let this control me. Because I know that eventually, this will get worse, and I will more than likely become like the others....afraid to eat...afraid to sleep...afraid to breath because any one of those could kill me.

Don't let life tell you what you can do. You tell life what you are going to do!!

Life is crazy Part 2

Life lately has been crazy.

Back in the beginning of December, life seemed grand. I was loving every aspect of my life, and my health seemed to finally be good. Then life happened....

My husband works for a park. So, being the dutiful wife I am, I volunteer at the park. I'm currently a board member with the volunteer organization. In the beginning of December, the park holds a festival called Old Fashioned Christmas. Visitors get to come to the park to see how settlers celebrated Christmas. It's fun! Every year, at the end of the festival, we have a tree lighting (with candles since they didn't have electricity in the early 1800's) and we sing carols. This year, my husband was in charge of getting someone to lead the carols....he picked me.....*sigh*

After all was said and done, the festival went off without a hitch, even though it was bitterly cold and attendance was low. My son and his girlfriend headed home just before me, so I found my husband to tell him to be careful on the way home and I got on the road to my nice warm home. I got a phone call from my son in a panic. His truck was acting funny and he was stalled at a grocery store. So, I stopped where he was and while he made calls, I waited to see what he was going to do...get a tow or try and drive it home. He decided to drive the few short miles we had left and try and make it home.

About halfway there, he pulled over on the side of the road and stopped on the shoulder of a very narrow curvy road. I pulled behind him and waited to see what he was doing. I watched as he got out, opened his hood and then proceed to walk to the driver's side of the truck and just rest his head on the door. I got out carefully and when I asked him what was wrong, with tears in his eyes, he walked to the front of his truck, pointed the light from his phone onto the engine. There I saw a hole in the top of the engine block about the size of a lemon.....Oh no!! We had only had his truck for a year and a half????? How could this happen??

Well, after many phone calls, a couple of tow trucks and lots of money, we found out his truck had a "rare mechanical failure that was undetectable" and "there was nothing you could have done to foresee it nor prevent it". Not what we wanted to hear. Here it is the end of January and we are still waiting for the truck to be done.....apparently the previous owner didn't ever do any maintenance on the truck so not only was the engine bad, but so was the radiator, the fuel system, and part of the electrical system....Life....*sigh*

Well....needless to say, that ruined our Christmas since every penny we had was going towards this major overhaul of his truck. But....we were together, we were all healthy (as healthy as someone with a mast cell disorder and a child with cyclical vomiting could be anyways), and we didn't need to hand out presents to show each other that we loved and appreciated each other.

The Friday after Christmas, I began to get a tickle in my throat. No worries...I just upped my Zyrtec that day. On Saturday, I felt horrible. Now mind you, I am still trying to work out getting my son's truck fixed during this time. I ran a few errands, got some over the counter flu medicine and went home and curled up on the couch and slept. When my husband got home from work, he woke me up and told me I was burning up. Uh oh.....so I took my temperature. 104.......

Sunday, I stayed on the couch and woke up only to go outside in the freezing weather so that I could cool my body off. The fever would not go down. On Monday, I woke up, sent a message to my boss and told him that I would be in but only for an hour or two so that I could get my work done and then I would be off to the doctor. I called the doctor the minute they opened and they told me to get there as soon as I could. When I got there, I was glad to see that my fever had gone down to 101 finally. (that sounds horrible). He checked me out, and confirmed my worst fear. It was the flu. Then to my horror, he advised me that not only did I have the flu, but I had H1N1....the swine flu! You know...the flu that kills people??!!!

I spent the next week in bed on tons of medication, monitoring my fever and breathing. Somehow I made it through without an episode of my IA.....thank you, God!! After I finally got well (about two weeks before I felt normal), I thought for sure all of the mess would be over with. Nope!

My husband was helping me get some boxes out of our shed and he was high on a ladder, handing me the boxes down below. We got to about the seventh box when the ladder he was on started teetering. Before I could grab it, it collapsed from under him, and down he came.......first hitting a shelf with the middle of his back, bouncing off that, then landing on the lawnmower motor in the middle of his back. I panicked! I started to run to grab my phone and call 911, but he stopped me and said he was fine and he got up, and walked into the house. He appeared to be ok, except the ugly bruise on his right arm and down the right side of his back. Now....he's a pretty resilient man, and rarely gets hurt, so I had no reason to question him when he said he was ok.

WRONG!!!

After laying in bed for almost a week, unable to hardly move, he finally agreed to go to the doctor. Amazingly, he didn't have any broken bones (we thought a couple of broken ribs for sure), but he did have blunt force trauma to his back.....basically, if it would  have been his head, he probably would have died from the fall.

That was a week ago. Now, we are dealing with freezing temperatures and icy roads. Living in Texas, you aren't supposed to have to worry about that...or so we thought! But, life goes on and we are all still here.

During this time, something good did happen. The company I work for transferred me out of our customer's facility and to our facility. I love my job, but being in house with your customer can be very trying at times. When they get upset about something (your fault or not) they feel the need to get in your face and scream at you. Five and half years of doing this....did I mention that I've only had episodes when I was at work? All of them? Never one at home??

My IA (so far from what I can tell) is brought on by stress.

The move is a Godsend for me. No more stress from dealing with irrational and irate customers in my face. Now....to see what happens with my IA...

(my last day at my customer's facility I had a weird "episode". I got dizzy and then the left side of my entire head went numb for about an hour. Tongue and all - maybe IA related, maybe not. Only time will tell)