Trust, Thankfulness and Self-esteem

I did not mean to go this long without doing a blog. I wanted to do one entitled, "In defense of Autumn", but I was always too exhausted to even transfer the pictures I wanted to use onto the blog. Now that Thanksgiving is past, I guess it is too late. It was going to be a fun, happy blog and I like fun, happy blogs. I asked God the other day why it seemed my lot to write deep, emotional blogs when, really, I like to laugh and have fun as well. I didn't get an answer.

Quite frankly, this Myasthenia thing has been kicking me. I continued to try to fight back and continue to do the things I felt I needed to do, but it didn't work. Two weeks ago I ended up at OHSU because of a "myasthenic crisis". Whereas I am called an under-responder to my anaphylaxis (it doesn't scare me), I was totally traumatized over the myasthenic thing. It has caused me to ponder things a lot.

Josiah was at college and very worried about me, so when I got out of the hospital, Joyce drove me to his school to pick him up and bring him home for a day. I told him that I knew I didn't look so good, but that I wanted him to know that I was improving rapidly. He told me that was no comfort to him because I looked really bad and if I was a lot worse than that, he found it very scary. Joyce didn't know the way to get home from Josiah's college, so I went along when she took him to school, so I could help her find the way back. It just so happened that a huge storm came through and stranded us in Seaside, OR.

It wasn't lost on me that this could well be God's way of getting me to sit still for awhile. So I sat and I pondered. I asked myself a lot of questions. I asked God a lot of questions. I didn't ask people a lot of questions because people stress over me and I don't want to make it worse. I felt traumatized. Mental health professionals call the "Glad Game", "re-framing". So let's just say, I kept trying to re-frame things and no matter how I did it, it was hard. I kept hearing this God voice in my head saying, "trust me" and I can say that I honestly did not quit trusting. I still believed that all days are good, but some days are hard and I believed that God never wastes my pain. However, hard is, well, hard. Just because I believe all those things does not make me immune to intense pain.

I remember sitting and looking out the window at people in the hot tub and people in the pool and people just walking on the beach and I wondered if it was a sin to want so badly to just be able to do the things they were doing.

I thought back on my life and tried to figure out why losing responsibilities made me feel so lost and useless. I thought back to ten years ago, when my ex-husband left. I felt less than worthless at that point. I had tried so hard to please, that my whole life revolved around trying to please. When he left, I no longer knew why I did anything I did other than to please him. I slowly found myself again. I determined that I would be a success, and in people's eyes I was. People thought I could do anything and fix everything. No one knew how I could do so much. By the time of the accident, I realized that I had become too independent. You see, if you depend on others, they may let you down. It is safer to rely on yourself even if it is a struggle. It wasn't even just about being a success or being independent, it was about wanting to help people. I love to help people.

Now I was faced with just me apart from what I accomplish (or don't accomplish). How could I give up any more responsibilities and still have any self worth left. (Once again, some of you are screaming the answer...I know and have known the answer, but knowing and feeling are two different things). Silent tears...so many silent tears during those days of questioning.

When we got home, I went to my mom's house. My brother was there. I told him how the myasthenia thing had scared me and I never wanted it to happen again. He broached the subject of moving my parents to the house next to one of my sister's to relieve me of the responsibilities I currently had with them. For 10 years I have been helping them. Long before people knew they needed help, I was helping them. I always wanted them to be able to stay at home until they passed. I planned to make that a reality for them, but I knew that what my brother said made sense. I didn't want it, but the choices were limited. After the myasthenic crisis, I knew that it would be quite easy for me to die just trying to continue what I had been doing.

When absolutely no one agrees with you, does that mean that maybe you are wrong? When I talked to any friend or family member, not one of them agreed with me about continuing to live life as I previously had. All of them told me I needed to pace myself. I am not a "pace yourself" kind of person. However, after a lot of pondering it occurred to me that all the people I encountered from family to friends to coworkers loved me for me and not for anything I had done. All of them asked or begged me to stop doing so I could continue to be (as in be alive).

So now I had come full circle. As a child I felt loved apart from anything I did. As a wife I felt rejected no matter how hard I tried. Then I felt loved for all I was doing and now I realize that I am loved just by being who I am.

This has been a very hard lesson. I feel kind of lost, trying to find my place in this world once again.

The only reason I know things are under control is because I believe in the One who has control.

Now for the last part of the title of this blog...Thankfulness. Leading up to Thanksgiving, there have been a lot of people who are posting what they are thankful for. This is a great thing, but one thing I have noticed, is that all the things listed are nice things like family and food and friends and nice possessions. While it is appropriate to be thankful for these things, I believe that it is also important to be thankful for things like anaphylaxis and myasthenia  and painful relationships and struggles of every kind, because it is in the struggles that we learn the most important things in life. Carbon turns to diamond under intense heat and pressure. People shine more brightly when they let the heat and pressure of life transform them.

"Consider it all joy, my brethren, when you encounter various trials, knowing that the testing of your faith produces endurance. And let endurance have it's perfect effect that you may be perfect and complete, lacking in nothing. James 1:2

"My grace is sufficient for you, for power is perfected in weakness." 2 Corinthians 12:9

BTW-I haven't given up on getting better. Never, ever give up!

At this Moment in Time, You are the Only Person I See

I have a job.

I have a job as a nurse.

I am asked, "How can you have a job? You are SO not healthy!"

One day at a time. I have very supportive coworkers and the doctors I work with are amazing.

I not only work for money and for insurance.,

I work because when I am at work, I make a difference in people's lives.

So often, in the healthcare setting, patients and family members can feel so lost and helpless. I have experienced this. My experience helps me help others.

On Thursday a mom came to the clinic and asked for me. Her little 2 year old struggles with the same cancer that, Josiah, my son had.

She received the dreaded news a few weeks ago, that her child's cancer had recurred.

The survival rate is not as high for kids with recurrent cancer. As the mom finds out more and more, her fear gets greater. Understandably so.

She came to me for a couple of things. She wanted to tell me what the doctors had said and she wanted to know if it was alright if she looked for more opinions, for a person that might specialize in this particular cancer. I'm guessing she wanted to be listened to by someone who had been there.

What struck me during our visit as we sat behind a curtain, both of us trying hard not to cry, was the plea of her heart. She said repeatedly, "Those doctors have hundreds of patients. My child is one of many, but she is the only (girl's name) I have."

She left.

Sometimes I am so grateful that my desk is built into the wall of the pediatric hallway. I went to my desk, my face hidden, with tears flowing. Quietly. I thought about the mom, I thought about the little girl, I thought about my mother's heart, I thought about my cancer survivor son.

I started researching. Trying to find someone that specialized in her child's cancer.

Sweet mom of that little girl, when you were talking to me, you were the only person I saw. I see your face frequently in my mind. Please know that although your child is not the only patient I have, I will give my best effort. I will work to find answers for you. When you seek my help, you will be the only person I see.

Other people out there, for as long as I can remember, I have tried to ask the question with each patient I interact with, "If I were this person, what would I want from my nurse?" and I try to do it.

It occurred to me through this experience that I do that for my patients, but I don't always do that for other people in my life. Wouldn't this world be a much better place if each of us, in each interaction, treated people as if at that moment they were the only person we saw? Let's try it.

Tears

My grandpa moved into our house (where I grew up) on my 17th birthday. We became very close. We did a lot together. One day, nearly three years later, I was preparing for nursing school by coloring in my anatomy coloring book and he was handing me the correct felt tip markers. When it was time for the next marker, he did not hand it to me. When I looked over at him, he was purple and was having a seizure. Long story short, the cancer he had 40 years prior had come back. It was now in his brain and vertebrae. He died a few months later. I do not believe that there has been anyone before or since that admired me as much as he did. We had fun doing things together. My mom says that one of her favorite memories ever was when she was canning in the house and my grandpa and I were making lawn chairs in the shop. The chairs have since decayed, but the memories last. I cried when he died. Someone told me that I should not be crying, because after all, he was in heaven and I should be happy for him.

I pondered...

The verse, "Jesus wept" came to mind. I went back to the story.

I pondered some more...

Lazarus had died. His sisters came to Jesus when he finally arrived 4 days later. They were upset. Why didn't he come sooner? He could have saved him. They didn't understand. Jesus wept when he saw them. He couldn't have been weeping over the loss of his friend because he was God. He knew that he was going to bring him back to life. I believe he wept over the pain that he saw in the sister's faces. He did not condemn them for crying, or hurting, or even their dismay over him taking too long to get there. He cried with them.

Today, I thought back to that time so many years ago when I made a discovery through my own searching.

Today, I once again pondered what it means when I cry.

Today, the diagnosis came. It was the expected one. Myasthenic Like Syndrome (myasthenia caused by mast cells instead of the thymus gland). When the neurologist said it, I listened and tried to comprehend the treatment.  My sister, Joyce, had an appointment with the same doctor shortly after my appointment. I told her that it was a lot easier to suspect a diagnosis for a couple weeks before having it confirmed, because then you can ease into it. I was positive and upbeat.

However, a couple hours after I got home, tears started coming out of my eyes. I don't even know why. I know that may sound stupid, but I really don't know. I don't feel scared, I seem to have lost that emotion after all the experiences I have had in the last few years. I don't feel angry. I don't feel depressed. Josiah asked if it was discouragement. I don't think so. On the night when I realized  I probably had this disease, I know why I cried. I cried because I didn't want it. But since then, I reframed it. I pondered. I found good. I found ways of coping. I trusted in my Father and I knew I was loved by him and he would not waste any of my pain.

When I was a little girl I had my life planned out. I was going to marry a man that would love me like my dad loved my mom. I was going to have six kids, just like my mom and dad did. I had a beautiful future planned out. But then, life happened. It wasn't as I planned. I would be lying if I said it has been easy. It hasn't, but I am not lying when I say it has been good.

However, here I sit with swollen eyes, unable to even figure out why. Maybe it doesn't matter. What does matter is that God knows. He is not looking down at me and saying, "Where is your faith? Don't you know that I have a plan? Where is your joy? Buck up!" No, he is not saying that at all. When I close my eyes, I feel his gentleness. I see a picture in my mind of a God who came to earth and cried over people's pain, even though he knew the future and knew that in a few moments time, they would be rejoicing over their brother's resurrection.

"You (God) have taken account of my wanderings; Put my tears in Your bottle.
Are they not in Your book?" Psalm 56:8 Seriously, God cares so much about my pain that he collects my tears in a bottle. Amazing.

"For I know the plans I have for you "declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future." Jeremiah 29:11

His Mercies are New Every Morning (and another secret recipe)

I've been going through another pondering phase. I've tried to write several times, but my thoughts were going in so many different directions, it was futile. Today, I found my focus. It is in the title of this post.

I've been having neurological issues that I had been attributing to what I call my "brain thing"(the post stroke problem). However, there were new things coming up. I chose to ignore them. I mean, really, what is the likelihood that a person would have two brain things. I am going to be radical here and say that I really think God is the one who gave us the ability to block some things and keep them out of our minds. Otherwise, people might go nutso. I'm not saying it is good to avoid processing through things, but maybe some things can wait awhile until other stresses calm down a little.

Back to the story...about 4 months ago, I was at work and one of the doctors mentioned that a patient had ptosis (drooping) of just one eye. He said that was not good. I asked him why and he said that it was an indicator of a neurological disease. He said the name, but I did not remember it later. I told him that I had ptosis of my left eye. I noticed it about 6 months ago. He said it wasn't a problem if I were born with it. At that point, I wanted to have been born with it. I chose to block it out of my mind. However, leading up to and during my last hospitalization, I was developing weakness all over my body, instead of just on my right side and my voice would sound funny sometimes. When I went to my neurologist, she told me that she thought I probably had Myasthenic syndrome. I said, "that would be a bummer," and I left and went about my day, trying to keep that thought at bay.

One of the ways I survive life is by not focusing on my problems. I don't completely ignore them because if I did I would end up not treating my anaphylaxis and that would be fatal. I couldn't help but notice weakness, but I just went about my day and tried to ignore it. After the visit to the neurologist, I started paying attention and realized that there were different things going on with me. Sometimes I get weak and numb on my right side only and this is often associated with other symptoms I had during my stroke, such as expressive aphasia(not being able to speak the words I am thinking...have a voice, but the words will not come out), and right sided vision problems. However, at other times I just get weak with no numbness and no associated symptoms. Sometimes I have everything at once. Every day when I wake up I have my voice, then I have Katherine Hepburn's voice and then I have no voice. Every day when I wake up I am strong, then the more I move the weaker I get. All of these symptoms match Myasthenia. To say I am excited about this, would be a lie.

Now for the fun stuff, you know, the glad game. What have I learned? What is good about this? It is in the title of this blog! Every morning, I get to wake up to a new me. I have a voice. I have strong muscles. What a great reminder of God's mercies! They are new every morning! What a powerful reminder and encouragement.

Secondly, I have refined my ability to not worry about the future. It is more automatic. The other day I thought to myself, "I can't even walk on the beach anymore, because I wouldn't know how far I could go and I could lose my ability to walk and end up stranded. A wheelchair can't be pushed in the sand and by the time I got my strength back the tide may well have washed me out to sea." But then I said to myself, "I am not going to the beach today, so what does it matter?" It really doesn't matter. Who knows, I may go into remission tomorrow. I may not, but either way, each day I will have all I need to do what God wants me to do that day.

Some people compare me to Job in the Bible. Actually, lots of people do. However, he lost his children. I still have mine. We both had unsupportive spouses and both of us have/had health problems, but a huge difference other than the kid thing is that he had rotten friends who gave rotten advise. Here he was, a Godly man and they were telling him that all this happened to him because he sinned. That hasn't happened to me once. I have the best friends and family a person could have. In fact, at my family reunion, my family gathered around me and prayed over me. I am so lifted up by the people in my life. I am beyond grateful.

And since I am so beyond grateful and people are requesting my secret chili recipe, here it is...

Start by soaking in a lot of water(at least to twice the level of the beans)

       1 1/3 cups pinto beans

        1 1/3 cup kidney beans

       1 1/3 cups black beans

Soak all day or overnight. Pour into colander and rinse.

Fry up 4 pounds of ground beef and 1 medium onion in a very large pot.

Add 2 large cans tomato juice
2 quarts canned tomatoes
1/4 cup chili powder
1 tablespoon salt
1 tablespoon cornstarch
1 tablespoon minced dried garlic
1 tablespoon ground cumin
1 1/2 tsp coriander
1 1/2 tsp basil
1 1/2 tsp oregano
1 1/2 tsp crushed red pepper flakes
3/4 tsp pepper

I cook this all together for most of a day. Then I transfer it to a crock pot and cook for another day. Cooking it for so long blends the flavors nicely. This is not a spicey chili. If you want it "hotter", just adjust the spices accordingly.

It's Time for a Happy Blog!

I asked God to please give me ideas for a happy blog. I don't like being "deep" all the time. I like laughing. So, this blog is mostly just a happy blog about various subjects.

First of all, for those who read the blog, "Do They Call it the Am I Going to Wear a Pink Ribbon Room?" The mass in the pink ribbon place simply disappeared. No real explanation from the doctor, it is just gone. That was a double happy thing.

Now, people won't understand the next story unless I tell the face story. Sorry to those of you who already know the story. A couple months back...May-June, I was diagnosed with an invasive-aggressive cancer on my nose. I had never heard of this kind of cancer I'm a nurse, so you would have thought I would of it, but only 1 in 1,000,000 women get it. The National Institutes of Health does not paint a pretty picture about it and recommends radical surgery...like removing half a person's face. I was not overly excited about that prospect, but tried to be positive and optimistic. It turned out well and at this point people would not even notice the scar unless they looked close. Anyway, a few days back, I felt strong enough to go to the grocery store to get a few things. As I parked, I was sending up a quick prayer that I would not see anyone I knew. The reason for the quick prayer was because, having been on high doses of steroids for my anaphylaxis, I developed what they call a moon face. I don't really know why they call it that. The moon looks much too small to compare with the size my face gets when I am on that many steroids. I prefer to call it a "Baboon face". It got so big this time that it was hard to sit and talk because there was so much chin and it was hard to turn my face from side to side because I get this extra face going on from my cheeks to my ears. My face had gotten a slight bit smaller, but I REALLY did not want anyone to see me. As I'm walking across the parking lot, I see someone I know. I said, "seriously, God?". So the person says, "Hi, Dawn." Gives me a friendly hug and says, "You look great!" I was speechless for a moment and cocked my head to the side and said, "I have prednisone face, and just yesterday a doctor told me I looked awful." I have a tendency to say what I am thinking. He said, "I didn't notice that. Your nose is amazing. I wouldn't have even noticed that you had surgery. It is a miracle." OK, every time I see this guy I think, "God, I messed up again." He has a way of kindly bringing my attention to things I need to do better. I mean, here I was, just a few months after I dodged a huge bullet, so to speak, complaining about my face. Prednisone face goes away. It should be gone on September 29th. Not that I am counting the days...well, truthfully I am. Now, every morning when I see my face in the mirror, I say, "God, I love my nose and thank you that I still have a face." It's all about perspective.

My last subject is about recipes. I LOVE recipes. I read cookbooks like other people read novels. I have developed a secret recipe. It is for granola. I have made it umpteen times and change it a little each time. There are two ingredients that make it a step above other granola. My younger son, who lives with me loves it. He knows the secret ingredients, but he does not tell anyone. He lets people eat some and when they ask for the recipe he tells them, "Sorry, it's a secret." Well, I got to thinking the other day that if everyone kept their recipes a secret, there would be no recipe books. I am not quite sure what specific sin I am committing by not sharing the recipe, but I am sure I am committing one, or maybe more. SO I am going to share the recipe on my blog. I told my son and he was shocked. However, it is the right thing to do.

The secret of the granola is in the vanilla, the cinnamon and how much you put in. If you are using real vanilla, use the amount given. If you are using imitation, you might want to use a little more. The amount of cinnamon used depends on a few things. Cinnamon gives some people, like me, heartburn, so the amount listed is for people who may get heartburn. If you don't, I suggest you put more in because it has great benefits for the heart!

Mix together-
9 cups old fashioned oatmeal
3/4 cup chopped almonds (you can use any combination of nuts to equal 1 1/2 cups)
3/4 cup sun flower seeds
1 1/2 cups ground flax(there are more health benefits with ground flax than the seeds)

Spread onto 2 jelly roll pans-the pans that look like cookie sheets only they have 1 inch sides. Cook at 300 for 20 minutes, stirring after 10 minutes.

Meanwhile, cook until just before it boils-
1 1/2 cups honey
3/4 or 1 cup canola oil
3/4 cup brown sugar
Add 2 tablespoons vanilla
1 Tablespoon cinnamon
Mix with cooked cereal.

Bake at 300 for 7 minutes longer. Dump in a large bowl.

Mix in
3 cups crisp rice cereal
1 1/2 cups chopped dried apricots or dried apples...basically any dried fruit you want. I try to use whatever I dried during the summer/fall.
1 1/2 cup dried cranberries-you can use whatever other fruit you want, but I am partial to dried cranberries.

Let cool. Stir it up as it cools to keep it from clumping. Enjoy.

It was fun writing a happy blog. Hope you all enjoyed reading it and that you enjoy the granola!

Have a great day! By the way, did you know that if you say, "I am great" like you mean it for the first couple hours after you wake up, you end up feeling great! It works every time for me!

My happy mom with my happy sister, Joyce. I think they are two lovely ladies!

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.”