Those are Just the Advertisements

A week ago last Wednesday, I was so fragile that I knew if I was hit with one more anaphylaxis, I would not survive. It was not a scary thought; more of a simple knowing. Although it would seem I would consider it a hard day, it ended up being one of the best days of my life. This was because God put a picture in my mind of  the tapestry of my life. It is hard to explain, but the jist of it was that I saw an overview of my life. The high points of my life were actually the hard times and one event built on the next until I arrived at where I am today. I saw that all the things I consider myself a failure at were not really the important things. The important things were what my goals have been for as long as I can remember...to glorify God and to share his love with people. My ability to accomplish those goals was developed during the hard times of my life.

What was so significant to me about that morning was that the burden of failure was lifted from my shoulders. I have been so weighted down by that burden. As an adult I was constantly told that I was a failure. No matter how hard I tried, I was still considered a failure. I was told the only reason people liked me was because they did not know me. I do not live under that influence anymore, yet the weight of failure would not leave me. There were times of breaking free from it, but it always returned.

People say many things about failure. I have heard,"if you think you are a failure, you will be". That is not necessarily true. There are many successful people in this world who consider themselves failures. They continue to strive, day after day to succeed in their own eyes or in the eyes of someone they care about, but no matter how hard they try to shrug the burden of failure off their shoulders, they are unable to do so.

I have also heard that the only failures are the people that quit trying. The path to success is filled with times of failure. If we are trying to accomplish something, we will have failures along the way. There is a great book by John Maxwell called "Failing Forward" which gives example after example of all the failures that successful people endured before they found success. This book chipped away at my sense of failure, but the burden still remained.

When people would complement me, I would think, "well, they are saying that because they do not really know me." No matter what the complement was, I would find a reason in my head to discount it.

On that Wednesday morning, God not only showed me what the important things in life were, but he told me that he was pleased with me. Tears trickled down my face onto my pillow. All I have really wanted in life was to please my Father, God. I rolled onto my side and closed my eyes. I felt the gentle arms of God holding me and I rested.

Later that day, I saw that my younger son was upset about something. I sat and listened as he poured out his heart. He felt like a failure. He was not where he wanted to be in life. As I was listening to him, it came to mind that the things he was talking about, were just the advertisements of life. The real show, what really counted, was his heart, his caring for people and showing them God's love. Advertisements are necessary, but they are not the main show. Not only that, but I pointed out to him that if life had gone how he had planned, he would not be living with me and if he had not been living with me for the past year and a half, I likely would not have survived. I try my hardest, but sometimes I cannot think well during my anaphylactic events and would have failed to do what I needed to if it were not for him.

I have chosen to open my heart to people. I have chosen to reveal my faults, my pain and my joy. Many years ago, I was struggling with something and felt all alone. Then a woman came to me and shared. This woman had struggled with the very thing I struggled with. I no longer felt alone. This is why I share. It is not always easy, but my hope is, that in my sharing, someone out there might feel encouraged; might feel some hope; might feel that they are not alone.

God bless you all and may you have your eyes opened so that you might see that you are precious. You are a treasure and no matter how many times you have failed, you are not a failure.

A Bit of Honesty and Some Hope

Sometimes, when life becomes intense, I retreat into a world of my own. I still talk and function, but the feelings become hard to share. My life has been so over the top for the last year and a half that it is painful to watch the faces of people who care. The things that I do share are honest and from the heart. I am an eternal optimist. I do not fake the laughter. I do not fake the joy. I do not fake the peace. I do not fake any of what you see me to be, but sometimes when I am processing through life I just become silent and for a time yesterday, I felt depressed. So today I am going to share with you what is effecting my life right now.

In 1983, a nurse gave me the wrong dose of medication. As it went into my vein, I felt intense burning. When it hit my chest, it felt like an elephant sat on me and I said, “I am going to die” and I did. I was in a pleasant place and I am sure that the world was hustling and bustling around me, but I was in that pleasant place. Time ticked by and brain cells were dying, but all I knew was the pleasant place. Dying was pleasant. Waking up was not. When I opened my eyes, half the world was gone. I couldn't see it. I couldn't feel or move half of my body. I was only awake for a few moments before I had a seizure and was unconscious again. It was amazing how my body recovered. The hardest part was recovering the ability to speak, but it came back...all except for cliches(they mix together...”a hard row to hoe is worth two in the bush?” I don't even try to get those straight anymore) So I would be lying if I said that was not a traumatic experience, but it could have been a lot worse.

About 12 years ago, I started getting the stroke symptoms back and it took awhile, but I found a great neurologist who took one look at my history and told me that once the brain is injured, it is always injured and when it gets stressed it has the same symptoms it did when the stroke happened. So I learned to pace myself. I learned what the first symptoms were and I learned how to treat it and life went on. Was it hard to have this happen? Yes, and always a bit scarey because even though I believe that God makes all things good in my life, some things are hard. Each time this happens I can end up with more loss of function. I like function.

On January 14, 2011, I was driving in Washington with my sister, my oldest son, my daughter in law and a friend. We had to stop for an accident. Upon stopping, I looked in the rear view mirror and saw a semi truck crest the bridge that I was at the base of. I saw my kids in the rear view mirror as well and I thought I was going to watch my kids get killed. I don't really want to have a full on flashback, so I will not go into more details. They lived. We all lived. There were obvious injuries, but what came after the obvious injuries was most significant.

When the body sees danger, it responds. It activates its immunities. It does everything it can to protect and heal itself. As I watched the truck come at me, my immune system was gearing up. As the truck slammed into us and tore my arm from my shoulder, my immune system was gearing up. As my ribs hit the steering wheel, as my neck and back were violently traumatized, my immune system was going crazy. It was doing all it could to protect me and to defend me. It is well known that after traumatic incidences, the immune system can get confused. It is like a switch is turned on and the body does not know to shut it off. Some people end up with Lupus, some with Multiple Sclerosis or any number of autoimmune diseases. The body is still trying to fight when there is nothing to fight so it attacks itself. My body, in a sense, became allergic to itself. I have severe autoimmune idiopathic anaphylaxis. Anaphylaxis is not all that unusual. It is the thing you hear about happening when someone eats something they are allergic to or get stung by a bee. The difference for me is that nothing and everything causes it. There are things that make it worse,, but even without those triggers, if I were to stop taking my medication I would die by nightfall. At first I thought this was better than the other autoimmune choices because although it is life threatening, it was thought that the switch would eventually turn off and I had high hopes of being back to my normal self. Some of you may be figuring out how the event of 1983 connects with the event of 2011. When the body is actively trying to kill itself, it obviously stresses the body and I end up with stroke symptoms.

What is my life like? For the last year and a half, I have been taking medication every two hours around the clock and I try to avoid triggers. About a month ago I moved my two AM med to midnight and my four AM pill to six AM and was so happy to get 6 hours of sleep. I had a few more symptoms, but it wasn't bad. However, I got a respiratory infection, which is a major trigger and the anaphylaxis ramped up again. I was started on prednisone and was doing OK until 8 days ago. At that point the prednisone was giving me reflux and in my sleep I rolled onto my side and inhaled some of my dinner into my right lung. This in turn set off severe anaphylaxis and I was in the hospital for four days on unbelievable amounts of meds and even with all of those meds the anaphylactic symptoms were still breaking through. I scared the doctors. I scared the nurses. They told me so. They put me in a room by myself. They kept the door shut. They didn't want my body to even hear noise or see much movement. They wanted to keep out the germs and the particulates in the air. They wanted my body to completely rest so that my immune system would settle down. It reminds me of trying to put an overtired, irritable baby to sleep. So I am taking 36 pills a day right now and I feel brain dead. The world goes on around me, but I don't feel a part of it. I am writing now with ice packs on me to try to cool me down so I can wait just a little longer before I take more benadryl to hold back the anaphylaxis. I want to be active. I want to laugh, but I am too drugged to laugh.

That was the story. Now for the honesty....

For a year and a half I have kept positive. When I was in the hospital that positivity started slipping, so I wrote my own goals on the white board in my room. Goals to stay optimistic and positive in a challenging world and to make the world a better place for everyone I encountered. The goals helped, but still it was hard and I emailed my immunologist and said, “ I hate being in hospitals and I hate meds and I hate trying to explain over and over again and I hate it when people treat me like I am stupid about my own stupid illness...” I complained. The earth didn't stop spinning. I think, in fact, that people were glad that I let myself. I did play the “glad game” and came up with some positives. That's the rules.

For all this time, I have had hope for an end to all this anaphylaxis. I would say,

I have to take a lot of pills, but I won't forever.

I can't exercise, but I will be able to again.

I can't laugh too hard, but I will be able to again.

I can't cry, but I will be able to again.

I can't go in a hot tub to relax sore muscles,

I can't take a hot shower, but this will go away.

One day sickness won't be a life threatening event because this will all go away.

I can't eat spicy food, but this will go away. One day I can have salsa again!

I don't like seeing the fear in people's faces, but it won't last forever.

I'm tired of explaining, but this will go away!

However, to go away, it needs to settle down. There are too many things that trigger it and so many I can't avoid. Even without triggers, it always is with me. In the beginning, they thought it would go away. Now, they think they can get me to baseline. It is not going away. I am on a new medication that hopefully will help, but it most likely is not going away.

Everything has changed. Nothing has changed. God still loves me. God still has a plan and purpose for each day of my life. I said to my sister and younger son, “ I need to remember that God gives me everything I need to accomplish everything he wants me to do each day. I have always been a helper. I don't know what I am now. I can't even crochet shawls for ladies with cancer right now because my arm doesn't work. I don't know the plan, but there is one. I don't know what use I am.” Silence...then my sister said, “You inspire people.” If I inspire people, it is only because God inspires me.

“God, I thought I was to do so much more than what my life has come to, but God I trust you. God this is hard, but I know it is good. And God, I thank you for all the love you show me. I thank you that this morning I can type and get the words out that were waiting for expression. And God, I haven't given up. No one knows the future. I may yet be able to laugh and cry and exercise and even get sick without problems, but whatever happens, God, my joy is complete in you.”