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)

A letter to my mother

A letter I would love to give to my mother, but know I never will.....

Mom,

I love you. You mean so much to me, because you gave me life. Please remember this as you read through this letter.

I know I'm not your first born, and I'm not the baby, but why? Why do I feel like I'm nothing in your life? I wait for you to call, and sometimes, it's months and months before you even realize it and call me. I talk to Michelle and Rachel and they tell me that they talk to you all of the time, but you never call me. And when I call you, the first thing out of your mouth is,"what do you want?" Do you realize how much this hurts me? It's like I am a burden to you. You don't realize how much your words hurt me.

You once told my husband that I'm a hypochondriac.

Really?

Why?

Because I actually am sick?

Because as a child every time I would beg you to take me to the doctor, there was actually something so wrong with me that I usually ended up in the hospital or having surgery?

That's not a hypochondriac, mom - that's someone who is sick. But let me just say thanks for putting that stigma on me. Now everytime I feel bad, he throws in my face that even you think I'm faking it. I know I'm not beautiful like Michelle and perfect like your precious Rachel, but I am human. I can't help it that I look like my father. I truly believe that there are times when you hate me because I am a visual reminder of him. At least you finally admitted that to me - not that I was shocked, because I've felt it my whole life. And just so you know - your sister told me a long time ago that I looked just like him and that you hated it.

I've tried my whole life to make you proud, and for the first time in my life, you said it when I graduated college earlier this year. Why must I overcome huge obstacles for years before you even say you are proud of me? Am I that much of a disappointment to you?

About twelve years ago, I went to your work to drop something off for you. When I got there, I asked the woman at the front desk for you and she advised you weren't back from your bus run. She asked me if I was Michelle and I said, "no, I'm her other daughter." "Rachel?" "No.....her OTHER daughter, Donna." "Oh! I never knew she had three daughters! She only talks about Rachel and Michelle".

Wow........

That is how I have always felt.....the daughter that you don't want to acknowledge. Your shame.

Even though you make me feel this way, I still love you. I still want you to love me.

Maybe I'm just a glutten for punishment..........

And before you say it, I know....you think I'm being overly dramatic. I know. I've heard it all my life. Thanks for that too.....

Maybe I am being dramatic. But since I wonder sometimes if you even love me, does that make me dramatic? Maybe I feel that way because I'm not feeling love from you.

I'm not writing this to be mean or to make you feel bad. I just want you to realize that even though you made me feel this way, I still love you. I am still your daughter, and I will be there for you and fight for you with my last dying breath. You are my mom, and you are the world to me, even though I'm not to you.

I love you.

Life is crazy

The last few weeks have been mind-blowing crazy. If it's not me, it's my son.

My son has cyclical vomiting which requires daily meds. If he doesn't take them, he gets violently ill and starts throwing up and can't stop until the cycle ends (this usually being when he has thrown up every ounce of fluid in his digestive system - including bile) and then he has to be hospitalized for the dehydration. We've had his disease under control for over two years, but this past September, he got sick with a bad virus. He was out of school for two weeks because of it and ever since then, his medication he's been on for five years for the cyclical vomiting is no longer working.

This school year, he's missed 40+ days of school and it's not even halfway over. I want so desperately to fix him, but I know I can't. He asked me the other day, "Mom, why can't we just be normal like everyone else?" How do you answer that?

So now begins the journey of trying to find new medication that works and enrolling him in home bound studies through his school. If he wasn't a senior, I would just pull him out of school and start home schooling him again.

We can do this - and we will overcome this hurdle.......

Please??!!

Good times

So since the doctor told me that he wants to meet with me again once he has my test results, I spent the weekend with my husband at the park he works at. I forgot about my worries, slept in a tent in the fresh air, dressed up as a woman from the early 1800's and had an amazing time.

Putting your worries out of your mind - even if only for a few hours - can sometimes make a world of difference.

By the end of the day Saturday, my entire body ached and I was ready to crawl into bed and stay there until Monday morning. I just knew I would regret pushing myself. Sunday morning comes and I got out of bed and had one of the most productive days I've had in a while. Just letting my worries go for one day (but still be cautious of my health) and just enjoying life, I feel a little sense of hope and can almost see the light.....it may still just be a slight glow, but I can see it nonetheless.

"Today is a new day, so don't worry about yesterdays problems, because today you just might find your solution, live for today and pray for a better tomorrow."

author unknown

Life in Limbo

Diagnosed, but not confirmed....do I or don't I???

Sitting and waiting for the call of my results from this round of tests. I may have IA, I may have something else. Which is it? Because wouldn't that affect what medication I take? Wouldn't that affect my future? Why is this so hard to diagnose with absolute certainty? Why is it that the only for sure diagnosis is, "well, all your tests are positive, so yeah, you have IA"?? I can't wait for there to be a better way to help people that suffer from mast cell disorders.

My current doctor (number 4) says he wants to test me for pulmonary disorders........uh........ok?

And why are labs so freaking slow???? 3 to 5 days???? Really??? How come someone isn't in the back running the tests as the blood is drawn? SMH!!!!

The title of my blog.....

I'm sure people are wondering why I chose this title. I do not claim to be a beacon to others, but I hope to find mine. Searching for answers is tiring, and it seems like an uphill battle. Will this help or hurt me? What happens if....? Why do I feel this way? How come??

If I am able to be the beacon for someone else, then great! This blog is not only to help others going through what I've been through (and still going through) but also a place that I can go back too and see the progress or set-backs I've made and faced....

Testing, testing 1...2...3 (part 2)

Yes, I can ramble. And I find myself chasing rabbits....so here's the rest of the story.

The allergist I chose was one that happened to be on my insurance and close to my work. After discussing my history with anaphylaxis, he told me some interesting things...

I have had a history of medical issues that have caused me to undergo surgery 15 times, starting at 6 weeks old. According to him, the episodes could simply be that my body is burnt out on medication of all sorts. Surgery is very traumatic to you body, and since I had an extensive history of being cut open, that could be the issue...only the tests would be able to tell.

He also informed me that he believed that I had IA (Idiopathic Anaphylaxis) and that if he was right, allergy test would show that I am not allergic to anything, which is why it's called idiopathic.....no known cause.

So I scheduled the test. 150 allergy tests, all at once. Just get it over with was my thought.....uh....bad decision! It took just under four hours for them to prick/scratch me with the allergens. Wait half an hour and no reactions except to cats. Which I already knew. Not wanting to accept his initial diagnosis, I thought he just wasn't testing for the right things. Round 2 - another 150 tests. Again, no reactions. Round 3 - blood tests to check my baseline triptase level. I call a few days later for the results, and the lab messed up the sample. Needed to go back for round 4. Waited another couple of days, and call to find out that they (yet again) had messed up the test.

So I schedule an appointment with the allergist to see how he wants to handle it. He instructs me to start taking Zyrtec every day and that when I have my next episode, they can obtain the triptase level then and possibly get a baseline a few days after the reaction. He hands me some pamphlets on Idiopathic Anaphylaxis and tells me that he is positive that this is what I have. He was very sweet because he gave me a few minutes to read what he had given me, came in and did everything he could to calm me down. I know I looked like a deer in the headlights. I told him flat out that I didn't like his diagnosis and that I wouldn't accept it. He was very understanding and told me to go and get a second opinion, and that I would discover that I am not allergic to anything and that his diagnosis is correct.

So I did just that.

Now keep in mind, during all of this, I am continuing to have episodes of anaphylactic shock that happen to coincide with taking medication. Antibiotics, over the counter meds (one of which being Claritin) and unable to figure out what is causing it.

So allergist #2 - There's no such thing as Idiopathic Anaphylaxis. We just haven't found what's triggering the episodes. Let's do more tests.

The more tests included an additional 400 allergy tests, a blind test with the Claritin to see if I reacted and scoping my throat to watch the swelling during the blond test. Of course, I didn't have a reaction. His prognosis: I'm having seizures in my throat. Don't take the epi because I just need to let my throat close, when I pass out from lack of oxygen, my throat will relax, and problem solved.

EXCUSE ME??????!!!!!!!!!!! I DON'T THINK SO!!!!!!

So I gave up. Just live with it and hope for the best. Well, truthfully, I thought all doctors were idiots and what happened was a freak thing that would never happen again.

Then three weeks ago, the signs started again. Throat turning red, tightness in my chest, and feeling my throat swell, but not quite closing.

So my journey picks back up here....I found an Immunologist who has dealt with this disease before and I see him for the first time on Friday. Kind of curious what will happen next.......

Testing, testing, 1...2...3

Oh the tests that are done to someone who suffers from a mast cell disorder....there's blood tests, allergy tests, more blood tests, urine tests, neurological tests, scans, biopsies....and the list can go on. Since I am just starting my journey with Idiopathic Anaphylaxis, I'll take you to where I've been.

My first round of tests were simple...or so I thought. I went to an allergist to try and narrow the things I was allergic too, since I had four episodes of anaphylaxis, which all happened to coincide with taking a medication. I went to my very first allergist, and explained what I had been going through the previous month....yes, four episodes of anaphylaxis in a month. The first reaction was understandable. I had been stung by a bee. You see, I have dealt with these little devils in my childhood and almost lost!

I was driving down the road, window down, enjoying the beautiful weather. As I was stopped at a red light, I felt (what I thought) my hair tickling my chin from the slight breeze coming into the window. I went to brush my hair away, only to feel a stinging pain. I let out a scream, looked down to see the dead bee I had just killed that was on my chin. I went ahead and went to work. My thought was, "Sure, I've had reactions as a child....surely I've outgrown it!" Just an FYI....you don't outgrow severe allergic reactions!! By the time I get to work (2 miles away), my chin has doubled in size and feels like it's on fire. So, I tell my boss what's going on, and drive myself to the doctor. When I arrive, I can feel my throat closing, and inform them that I am allergic to bees and had just been stung. Epi time!! WOO HOO!!!.......NOT!!!

A few days later the bee sting I got became infected, and being in fear that I was going into anaphylactic shock again (my face was swelling and turning red, and so was my throat) so my best friend rushed me to the emergency room. Infection had set in. Easy fix....get on antibiotics! WRONG!!! The next day, I went into anaphylactic shock....again. I know this, because when my face and throat started swelling, I drove myself to my doctor's office - 45 minutes away! As I walked through the door of his office, I collapsed.

So, I just happened to be allergic to the medicine...it can happen.

So my wonderful doctor nursed me back from my collapse, yelled at me for driving myself to his office when I was going into anaphylactic shock and then told me to start some new antibiotics in a few days (my body needed time to recover from the anaphylaxis). So a few days later, I began my new medicine. Day one....no problems. Day two.....is this medicine supposed to make me turn red? Why is my voice sounding funny?? Uh-oh!

After dosing myself with my Epipen, my boss took me to my doctor. Yep.....anaphylactic shock....AGAIN!!

This was the very first time I saw that my boss actually was human! He stayed with me while the doctor stabilized me, and then stopped at the pharmacy to make sure I had something to eat and drink when I woke up, and then took me home.

When my husband came back from being out of town, I had to tell him my tale of excitement....he wasn't that excited about my adventures. I didn't call him to come to my aid, because I didn't realize just how serious my condition really was. Lesson learned.....always call that special someone....it's better for them to miss out on whatever they are doing, then having to explain why you didn't need them in your time of need....

A few weeks later, I began feeling like I was getting a cold or the flu, so off to the doctor again. After examining me, he informs me that I have tonsillitis, bronchitis and sinusitis....all the itises! He looks through my chart and decides on the medicine to prescribe me. An oldie, but a goodie. Something I've taken in the past, and never had an issue with. Zithromax. Day one, I feel fine. Day two, starting to feel a lot better. Day three, my throat begins to swell....*sigh* Not again!!!

That is when he tells me that I need to see an allergist to determine what I'm allergic too since I'm having all of these reactions to medications.

So begins my journey....tag along for the ride! It should prove to be interesting!

All alone and no where to turn

Ever have those days where you just feel all alone with no where to turn?

Well, I'm having that now. I feel like no one takes me or this stupid illness seriously. I'm so angry but I can't put it into words that anyone can understand. The people I love have no idea how scared I am out how to help me. My best friend avoids me...our at least that's what it feels like. My husband refuses to talk about this stupid disease, because if we don't talk about it, it doesn't exist.

No one understands how alone and afraid I am. Yes, I belong to a forum of people that share this disease, but they aren't here so I can cry on their shoulder. They offer advice and try to lift me up, but they don't know me. They just know of my struggles with this retarded illness that no one understands how it works.

Sometimes I think people think I'm making the whole thing up. Sometimes I think people don't care if it takes my life. Sometimes I think they wouldn't even notice if I was suddenly gone.

I don't want to feel this way. I want to live my life without any cares. But that's not what God has in store for me. I know He is working through me and that one day, I will help someone else who struggles with the same problem I have. I know this because He's done it before. That's how I met and became friends with Lisa. She became my best friend and we've shared so much. I know she wants to be there for me, but she has her own family, her own problems, and her own struggles that I can't understand.

I may not ever be cured. I may die from this disease. But I'll be damned if I'm going to let it break my spirit.

This too shall pass. Just keep saying, this too shall pass.

Here I Am....

I want to introduce myself and eventually, I will share my story. My name is Donna and I suffer from Idiopathic Anaphylaxis. At least that's my unofficial diagnosis. I'm hoping to change that soon.

The purpose of this blog, is so I can vent, document and maybe help someone else with my struggles. Living with a Mast Cell Disorder is hard. Especially since there are some doctors who won't acknowledge it at all! Yes, I've seen some of them...and the damage it does when they make you doubt....horrifying.

So since this is my very first post, I found something that I will be presenting to all of my doctors, prior to treatment. It is exactly how I feel and what they need to understand:

Dear Doctors,

A young patient presents at your ER/clinic/rooms, with unexplained symptoms of chest pain and fainting.

What is you first response?

I'd hope that you'd investigate.

I'd hope that you would take it seriously.

I'd hope that you'd reassure your patient that you believe them, and will do your best to help them.

But sadly, this response seems to be the exception, and not the rule.

"You're just anxious."

"You're just depressed."

"You're too young for [insert illness of choice]."

"You just need to get out more."

"You're wasting our time."

This is what far too many patients encounter.

Do you know that your response in that moment can influence that patient's relationship with the medical system for years to come?

Do you know that your response can make or break that person's sense of self?

Do you know we come to you because we are scared?

Do you know we come to you because we trust that you can help us?

Do you know that you can crush that trust with an uncaring word or flippant attitude?

Do you know that rare, doesn't mean non-existent?

Do you know the tears we cry and anger we feel when we are casually and sometimes callously dismissed because you could not find the problem after some basic bloods and a quick check of our vitals?

Do you know how we second guess ourselves and avoid seeking medical care in the years to come because maybe you are right, and it is in our heads?

Do you know we now no longer trust the medical system because you, the expert, you who we imbue with hope and power, told us we were crazy or wasting their time?

Do you know many will fail to get the treatment they need because you made them feel like a hypochondriac?

Do you know many will lose jobs, relationships, lives, because they will no longer seek care for their symptoms for fear of dismissal or ridicule?

Do you know that even when we find a doctor who can put the pieces together, we are hampered by that one exchange we had with you?

Do you know that we mistrust the compassion and understanding we receive from that doctor because our trust was dashed by your indifference and disregard?

Do you know that we will spend years trying to overcome the damage you created in that one exchange?

Do you realise the power you have?

We come to you scared.

We come to you with trust.

We come to you with hope.

We want to believe.

We want to feel better.

You may not understand our condition.

You may be frustrated by a lack of clear results.

You may be overworked and tired.

But do not forget your power.

Do not forget that you promised to first do no harm.

Do not forget you are dealing with a person, not a bed number.

Do not forget that in that moment we are vulnerable.

A kind word.

Genuine concern.

A simple admission that you don't know.

Will build trust.

Will build hope.

See us as people.

See that there are real world, long-term consequences to how you interact with those who seek your care.

You have the power to make or break a person's entire experience with the medical system.

Remember that before you speak with your next patient and use your power well.

 

Donna

 

Taken from: http://bobisdysautonomia.blogspot.be/2013/04/dear-doctors.html