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.”