Don't Let Life Discourage You

The Lord himself goes before you and will be with you; he will never leave you nor forsake you. Do not be afraid; do not be discouraged. Deuteronomy 31:9

This week was a wild ride for me. A week ago today, the crook of my right elbow started hurting right around where they had taken blood from me the Tuesday before. A few hours I started noticing that a bruise started around the area. This had never happen to me in the almost 2 years that I had started "falling apart" physically. I have gotten blood work taken at least once a month and much more frequently since everything started going 'wonky.' By morning, the bruise was worse and it was becoming very painful. I took my normal OTC pain reliever and it wasn't helping this pain. New bruise + new pain = panic me. I should know by now NOT to panic of stuff like this. However, when your body is broken "new" things like this tend to panic me. Not to be a big cry baby, I didn't call the doctor's office right away. I waited. The bruise got bigger. The pain shifted down my arm and up my arm. I called at 11 a.m. and left a message with the nurse. Here I have a disease that causes horrible pain. I don't call the doctor's every day. So, when I do call, you'd think it would send a red flag to the staff that maybe...maybe...something is wrong. (At least, that is what I'd like to think in my head.) So, I wait and I'm afraid that something is really wrong and not knowing what it might be I start to become discouraged and worried. The pain in my arm is so bad that I can't even open a door around 2 p.m. and I call the office again in tears leaving another message. Around 2:45 p.m. a nurse whom I'm not sure I've ever met, calls me back. The worst part? She's pretty patronizing about it all. Must have been something I did to the area and it is most likely the vein and where they took the blood...blah...blah..blah...She acts like I'm being a big baby about it. WHAT?!? If I called the doctor's office every day that I had a pain on a "normal" person's scale of "5" or greater, I'd be calling every friggin' day!!! I hung up and cried. Here it is a week later and the area is still really tender and hurts a lot but I'm tough now. No more panic. No more being afraid. It reminded me why I don't call the doctor even when I have the "I want to go me Jesus" pain. It reminded me why I don't go to the ER when I feel like life is about on the brink of end. Because...on the other end...it isn't. I'm not saying that to be mean or cruel but it isn't. They don't live with your body 24/7. They don't know you. They don't know what makes you tough or cry. I'm not saying that I wouldn't go if it was really "the end" or bleeding profusely but if it is going to get worse it will get worse and that is the only time they will or should hear from me outside of  regularly scheduled appointments. I have come to believe that pain is pain but whether my pain is a 5 or a 6 or a 7 or an 8 can all depend on my attitude or mood. Yesterday, I had pain that I would put on the scale as a 9. I could have rushed to the ER and spend the day moaning and groaning, begging for meds, feeling sorry for myself, etc. What did I do? I knew it would pass. I knew the day would pass. I spent most of the day in bed. I prayed. I took the meds I needed to take. I didn't overtake the meds. I didn't cry about how terrible my headache was. I just knew the day would pass. Today, my pain is about a 5. Not great, but still better than yesterday. I didn't let life discourage me.

Wednesday, I had my appointment with my Neuro Opthamologist. It went really well. My optic nerves are less swollen. YEAH!! She didn't up my evil meds. YEAH!! However, she chastised me for not taking more vicadin when I got my migraines. She lectured me for not going to the ER or to my general practitioner when the pain got bad. I tend to think that I am getting better because I'm not spending my time over thinking and over medicating my disease. I'm not letting life which includes this disease discourage me. I'm not perfect at it. I still panic. I still worry. I still over think. Yes, I do take vicadin (just took one Saturday). I still cry out for God to show me the purpose of the pain. I still get depressed at times about it all. I have just decided to change my thinking about things.

One thing that has helped is this blog. One other thing that has helped is prayer and my relationship with God. I also have a great support system with my friends and family. If you read this and need a friend, I am here for you. I pray every day that God give me a listening heart. I will always have a listening heart for you. I also have my walking. I walk every day for 30 min in pain or shine. I figure if I can walk to the bathroom that I can put one foot in front of the other. It is all mine and mine only. One day I will share with you why I walk. It also gives me time with God.

God did not give us broken bodies to punish us. He gave us broken bodies to show us His purpose for our lives. We just have to be still and listen. Don't let life discourage you....

My Race

Therefore since we are surrounded by such a great cloud of witnesses, let us throw off everything that hinders and the sin that so easily entangles, and let us run with perseverance the race marked out for us. Let us fix our eyes on Jesus, the author and perfecter of our faith, who for the joy set before him endured the cross, scorning its shame and sat down at the right hand of God. Consider him who endured such opposition from sinful men so that you will not grow weary and lose heart. Hebrews 12:1-3

I have a confession to make. I have always wanted to be a runner. I have always thought that a person who ran for sport or for exercise was...well, for lack of a better word...cool. It always seemed like that a person who ran had strength. Power. Control. The way the arms and legs and body moved in such a fluid motion (most of the time) was just awesome to me. I have never been a runner. I have always been overweight. I have always lacked some form of coordination. Somehow when I try to run my body doesn't want to work the way I imagine a runner's body is to work. My arms don't move fluidly. My legs don't move fluidly. My body does some herky jerky thing that is...well, for lack of a better word...not cool. I have always dreamt  of being a runner. However, my reality is that I just am not a runner. At least, not in this reality. So why would Paul write for us to RUN with perseverance? UGG!! He just loved writing in sports analogies. Such a "guy" thing. Now that my body is 'broken' the likelihood of me ever becoming a runner is even less likely than it was when I was a teenager. But I think to take the running out of context of the entire scripture is a tough nut. The scripture clearly says "run with perseverance the race marked out for us." Oh...no you just did not! A RACE marked out just for ME?!? I...AM...B-R-O-K-E-N!!! Did God not get the message that I cannot run a race? Maybe I should just help remind him that I am broken. Wait!!! He allowed this to happen to me and now He wants me to RUN a RACE?!? Maybe I should tell him that I "think" this race is too hard! That's the ticket. This race is too hard!! I can't do it any more because I am broken. My body hurts and hurts baaaddddd. Maybe I should tell him I don't want to do it. I'm going to just stop right now. I'm going to pull a toddler moment and lay down on the ground and kick and scream (within reason because remember my body is broken) because I DON'T WANT TO RUN THIS RACE!!!!!! I am tired and I am slow. I am dragging my feet. No running here. Wait...there is more scripture....

"Let us fix our eyes on Jesus, the author and perfecter of our faith, who for the joy set before him, endured the cross, scorning its shame, and sat down at the right hand of the throne of God. Consider him who endured such opposition  from sinful men, so that you will not grow weary and lose heart."

When I hurt and am in the most pain that I have ever felt, I call this "I want to meet Jesus" pain. Yet, Jesus suffered more pain that I will ever know. I know I have a broken body, but Jesus was beaten to death for me...for you. He suffered the ultimate broken body. His "race" to the cross was a slow, painful, broken path to Golgotha and he did it out of his love for you and me.

When I don't want to "run" my "race" any more because I "think" my pain is too much to bare, I need to focus my eyes on Jesus. My race is marked out for me just like Jesus' race was marked out for him. He was not a marathoner, but he crossed the finish line to make sure that we could all live an eternal life. So right now, I just need to press on even if I "think" it is too hard or I don't want to because I have a race to finish.

F.E.A.R.

Moses said to the Lord, "O Lord, I have never been eloquent, neither in the past nor since you have spoken to your servant. I am slow of speech and tongue. The Lord said to him, "Who gave man his mouth? Who makes him deaf or mute? Who gives him sight or makes him blind? Is it not I, the Lord? Now go; I will help you speak and will teach you what to say." Exodus 4: 10-12

This was the last scripture read today from a very moving sermon the pastor did today at church. He talked about always listening to God's calling. You know that God speaks to me from the last blog. Sometimes He speaks to me through others, through songs, through scripture and sometimes I do hear Him speaking to me. It may not be like Moses did. It is more of a feeling or a constant thought that just plays over and over or a situation that happens over and over. He speaks to me all the time. Today He spoke to me through the sermon, through the scripture, and through a friend who brought up the same topic of "fear" on Face book today. God speaks and He speaks your purpose over and over.

Fear is mind blowing. Fear is all in the mind. It is thought consuming and it is your thought consuming. Today, while the preacher was preaching about fear, I was (what I hope) divinely inspired by this acronym. Fear is really FALSE EXPECTATIONS ABOUT REALITY. Wow!! What do I fear? Is fear the same thing as being scared? Hmmm....

Well, I fear the future. I don't know what the future has for me. Will I go into remission? Will I be blind? Will tomorrow be more painful than today? These are all false expectations about a reality that haven't happened yet. I start to think. I'm not really scared to go blind. I'm more fearful of when it will happen of if it will happen. Is that a reality for me? Well, yes, but it is a false expectation for me because I'm not blind now. I'm sitting here typing this out. My vision is not good, but I'm not blind. God states in Exodus "Who gives him sight and makes him blind?" Now what did that have to do with Moses? Ummm...I really don't know. But it has a LOT to do with me. God has MY sight in His control. My false expectations about reality did not have God in it's sight (no pun intended). God continues to say "Is it not I, the Lord?" Why...yes...yes it is! Who am I to fear my future of my eyesight? I know if I go blind that I will be O.K. God will still be there and will still be seeing me through even through it all.

God's calling to me has been clear. "Write a book about finding a purpose when your body is broken." Yet, I had been feeling pretty good. I had felt like I was pushing through the pain. I don't fear pain. I felt I could persevere and gosh darn it, I wanted a part of my "old" life back. I had decided, completely on my own, to get a simple resume together and hand it out to some of the local daycare centers. It wasn't about the money. We are not rolling in the dough, but God has taken care of our basic needs. Our mortgage is up-to-date. Our bills are basically caught up. We have no credit card debt. It was more of a selfish desire to just go back to secular work. I was feeling some guilt and pressure from some outside forces that I should at least "try" and work. I had even been told that maybe 'work' would 'cure' me. I know that would not happen, but gosh, it is so good to dream and the extra money would be nice especially with the holidays coming up. However, the Monday that I was going to 'take matters in my own hands' I developed the Worst Headache Ever. It lasted through Tuesday (if you read my last blog you will note me saying this as well). No medicine helped get rid of the pain. It was horrible. God spoke even through my pain. I just didn't know it until today. Here is a quote that the pastor used today: We see spending our time on things that are not safe or that could cause us grief as a waste of time. Well, duh! Working would be all of that...not safe....cause me grief...and would be a waste of time because I need to write. I need to do what God has called me to do and that is to write. I also need to spend more time writing in this blog which is what I will pull together for the book.

When I first was diagnosed with the disease, I searched for a book or a story that I could read that would help me sort out my feelings. All I found was clinical information, articles and videos on the Internet. My gut, now I know it was God calling me, told me to write the book I wanted to read. At first I just pushed it aside. How could I write that book? I was just recently diagnosed. I also had a lot of misconceived ideas about the disease which I will share a lot of throughout the book.

 I was struggling. I am married to a wonderful man. He was struggling. I have three beautiful children. They were struggling. I have extended family and they were struggling. My friends were struggling. I still felt unworthy to write anything let alone a book. How could I explain this disease to anyone? I couldn’t even understand it myself.

 Early November of 2010, I took a road trip with my brother and his son to the coast of Mississippi. I was fortunate that my father-in-law helped provide the financial means for me to stay in a lovely renovated plantation. I spent a lot of time thinking about my life. The idea for the book kept coming up while I would meditate and pray. I just fought it and fought it. I was sitting on the bed. Across from me was a vanity with a huge mirror. On the vanity I had set my 8 bottles of prescription drugs. I looked in the mirror. I looked so normal. How could someone look so normal be taking so many drugs? How could I explain that so that people could understand? Who was I to write a book? Who was I to comfort people? Who was I to tell them that they were not crazy and that they were stronger than they thought? I didn’t understand it myself. I started to cry. I just didn’t know what to do with my life.

 The next morning I went to breakfast. This place had the most amazing breakfast. It also had a room that was windows from ceiling to floor. It faced out to a beautiful fountain. Peacocks roamed free here. You could here them honking. They had no care in the world. They were so beautiful. I just watched the scenery. Nature. Nothing else. No traffic. No people. Just calm and serene. Then I looked at my watch. My heart almost stopped.

The watch I wear most of the time was a gift from my grandmother the Christmas right before she passed away. It isn’t very expensive, but it is beautiful and elegant. It is also hardy. In early October, I noticed that it wasn’t keeping time the way it should. I’d set it and when I’d look it would be off. At first it was just off by 5, 10, 15 min. Then, it became slower and slower. I kept resetting it. It would run the way it should for awhile, but then would start getting slow again. Some days I wouldn’t even notice a difference. I loved that watch. No one else knew that watch was having a problem but me. It still looked like a watch. It still worked like a watch. It just wasn’t keep the same time as everyone else’s watch. I didn’t throw it away. I didn’t go out and buy a new one. I didn’t scream at it and say “WHY DON’T YOU WORK LIKE THE OTHER WATCHES IN MY HOUSE?” When It was time, I got a new battery and it works fine now. Yet, it doesn’t have all, it has been altered to keep working like all the other watches in my house. Why? Because I love that watch. It was important to me. If I were to take that watch off my wrist and hand it to you, you would have never known it had a problem or whether or not it still has a problem. THAT is what Intracranial Hypertension is like. I’m not being flippant. Our bodies are more complicated than watches, but we love our bodies. We want are bodies to work. We are like a beautiful watch that is running sluggish. We are the only ones that know what is really going on. Frustrating? Yes. But that makes us special. Special in a way that no one else will ever understand. There will be days when you will work just fine. There will be days when you will be a little off time. There will be days when you will be hours and hours off. BUT, you are still that beautiful watch that is loved. If you get nothing else from this book. I hope you always remember that!

It's hard to find your purpose when you have fear controlling your life. Sometimes your purpose is right there and God is telling you and showing you, but your fear can be so strong that it is like the basket over a candle. If you are unsure of what your fear is, what do you wrestle with in the dead of night? I always say that I never had 'problems' until the sun went down and then they all came out of the woodwork. Then, the wrestling would start. Am I good enough? Am I smart enough? Am I going to make it? Does anyone really care? What if my only purpose is just to die a painful death? Let me tell you. You are good enough. You are smart enough. You are going to make it. Doesn't matter if no one on the planet cares because God the Father cares. Jesus cares. If they care, there is more to your life than to die a painful death. How do I know? Because I'm living proof. I've struggled. I still struggle. Not one of us was put here by accident and we all have broken bodies of some sort. Hang in there!!

God Speaking

But those who hope in the Lord will renew their strength. They will soar on the wings like eagles; they will run and not grow weary, they will walk and not be faint. Isaiah 40:31

This is one of my all time favorite verses since becoming sick. I liked this verse before. I loved it after. Since I last wrote, physically, life has been hard. I don't know what comes first if the depression brings the pain or if the pain brings the depression but I can honestly say that this time the pain brought on the depression. I could make a list of all the afflictions that comes with not feeling good, but one can probably guess. I think that the worst part is that the viscous cycle of being tired from the pain brings on more problems. Your strength is zapped. Unfortunately, the thing that is the farthest from your mind is God. To be completely honest, I get mad at Him at times. How could He allow this to happen in my life? Yep! ANGRY. I've said that before and the looks and responses I get from people range from those that know what it is like to be angry at God to those that cannot...NOT believe that I actually admit to being angry at Him to just saying that they don't believe in a "god" anymore. The last one makes me the most sad. However, all that has it's own blogs and this isn't it. Soon, but not today's.

Yesterday was not a good day. I hurt. I wanted to just curl up and let the world suck me into it's vertex. It was one of those "I want to just go and be with Jesus" days. I felt as far removed from God as it was going to get. Yeah...yeah...I know...what an oxymoron...want to go be with Jesus and feeling removed from God, but that is what the pain and meds and depression does to me. Throw in the anger and...whelp...you got the feeling of no where close to feeling near to God. I go to bed in pain. In tears of pain and anger I silent cry out "IF YOU ARE THERE, SPEAK TO ME. SPEAK TO ME!" Nothing. "TELL ME THE PURPOSE! TELL ME WHAT THE PURPOSE OF ALL THIS IS!" "Please...just tell me you still care....you still hear me when I cry." {Shot, I'm tearing up again just writing this all out!} Nothing. Nothing. Nothing. I fall asleep.

I wake up. Headache still there. Still nothing. I had to take my oldest daughter to school early. I passed the normal turn home and turned on the next street. Because of this, my car was parked opposite of what it would normally would be parked. I walked around the trunk of my car. My right eye is the most affected by it all and I saw a medium sized dog running right at me. I FREAKED!! I screamed and ran toward the stairs. The dog was a boxer breed. Thankfully, it was tame and very well trained or things could have turned out sooo bad. It still kept trying to come towards me in a friendly dog manner but I was still freaking out and screaming. I got to the door to find it locked by my youngest children. They wouldn't let me in because they were afraid that the dog would come in. ARE YOU KIDDING ME?!? The dog was tame enough to not growl or bark or attack because I was ready to really hurt the poor thing. My kids finally let me in. The cops came and got the dog. I finally calmed down. I was telling the story to someone who said "Wow...God was really looking out for you today." Hmmm....I guess He was. It could have turned out so differently. Then, a good friend sent me a link to another blog that really touched me and spoke to me. The lady said she knew how to "do sick" and was trying to figure out a way to get out of "doing sick" and still live with her disease. Yeah...me too!!! God was speaking to me again through this blog. Then, I read another blog by Mandisa. She is one of my all time favorite singers. She is struggling with losing weight. Yeah...me too!!! Even famous singers struggle with weight issues!! God spoke to me again. But...He wasn't done using Mandisa. Tonight, on the treadmill, getting in my walk. Out of the 1000+ songs on my iPod that are on shuffle, what song would come up but "God Speaking" by Mandisa. I listened to that song not once, but twice. He was listening. He was there. He was with me in my pain, through my suffering, in my depression. He let me scream at Him. He spoke to me. I just had to listen. I had to be ready to listen. He didn't send fireworks or a supernatural hand to write on a wall. He didn't send Archangel to deliver a message. I just had to be open to God speaking. I think He speaks every day and we just don't hear it or maybe He doesn't. I don't know. I'm not God. I just know He spoke today...

Peace ~ Was it the Beginning?

Peace I leave with you; my peace I give you. I do not give to you as the world gives. Do not let your hearts be troubled and do not be afraid. John 14:27

Every story has a beginning... A Once Upon A Time or when the boy meets the girl or when the thriller starts the mystery. Even my story has a beginning.

Many nights I have lain awake wondering when it started. When did this disease start? Was it 2004 when I got pregnant against all odds? Was it early 2009 when my personality started to change and I started getting migraines several times a week? Was it before either of these? I have pondered and pondered when it was. One moment stands out more than others. I can't say that it was when the disease started, but it is when I know that there was going to be life changing things happening in my life. Here is that story...

April 19, 2010 I started having pains like no other. Screaming, gut-wrenching pains. I jokingly refer to that time as Painmagadon. My gut felt on fire on most days. It was my gallbladder. After the test they do where they put dye in and see how the gallbladder is functioning, it was discovered that my gallbladder was functioning at 5%. In fact, seconds after the tester had administered the drug to make my gallbladder "think" I had just eaten a cheeseburger and fries, I screamed "DEAR JESUS HEAL ME OR KILL ME!" He did neither that day and my surgery was scheduled for May 3rd. I was not nervous going into the surgery. Just relieved that the pain would be over. I just knew that after the surgery my life would be different. Funny thing is that my "different" was not the different it turned out to be. They wheeled me into the operating room and the anesthesiologist put the mask on me and asked me to count backwards from 100. 100...99...98...97...96...95...94....93

Peace. I felt such a peace I had never known. My next conscience thought was that I was in the arms of Jesus and I felt such peace. Pure peace. Human words cannot even describe the peace I felt. I don't know how I knew I was in the arms of Jesus. I just knew. I didn't see anything else. I didn't see anyone else. All I felt was this awesome, beautiful, lovely peace and I wanted to stay there forever...for eternity. I don't know how long I was there. Seconds? Minutes? Hours? Then, I heard the nurse calling my name.."Kristina." "Kristina?" I then looked into his face. I remember his eyes. Kind, beautiful eyes. Jesus' eyes. I said, "If I go back, I'll have to leave you." (I still tear up remembering all this.) Then, he smiled. The smile is one I cannot humanly describe. Beautiful. Peaceful. Full of love. Full of hope. He faded away and I watched him go up. I was so sad to watch him go. I then woke up. As far as I know, I hadn't died. My heart hadn't stopped. I just know that Jesus was with me and I with him. He surrounded me with Peace. Such Peace. Pure, beautiful, lovely, sweet Peace.

I, to this day, question why I couldn't go with Him. I was a little mad at that nurse that woke me up. When I am in my darkest points and in the worst pain, I think of that peace. I remember that time with Jesus. You know what else? I don't remember Jesus' arms ever leaving me. I remember his face fading away, but I don't remember his arms leaving me. That day, for me, was the beginning. That event was the moment I knew my life would change. I have never shared this story publicly before. I have told a few people about it up till now. It's hard for me to tell it without crying or to want to be back there again. Sometimes it is even painful to know that I live in a world with impure peace. I am so human that I cannot hand out this Pure Peace that I have experienced and that saddens me. All I can do is share. Share my story. Share the beginning. Share that there is a purpose to life. There is a purpose to your life. Your body might be broken. Your soul might be hurting. I know because mine is too. We are human. But, There is a Pure, beautiful, lovely, sweet Peace. I know. I have felt it.

Changing Again

Yes, The name changed again. Part of the memory problems in me. *sigh* Good thing I write things down. The title of the blog/book is to be "Finding Your Purpose When Your Body is Broken". It won't change again. :0)

Change

Several things happened this week. I don't believe that life is just a matter of mumble jumble events that are meaningless. I am a Born Again Christian. I have a strong belief in God. I believe that all things happen for a reason. Nothing is meaningless. I have felt called for a long time to write a book about my experiences with my disease. I, however, being the human that I am have been saying "NO!" I have felt unworthy. I have felt that I haven't lived long enough with the disease. I have felt that I was not good enough of a writer or that no one would listen to my words. I have felt purposeless and have felt that nothing I did was exactly that...nothing.

I have a gift. I've had it for a long time. I've had it since I was a little girl. People are drawn to me. I can't explain it. I'm not bragging about it. I can't say that I walk into a room and everyone is drawn to me like moths to a light, but this gift is special. People are just drawn to me. It is hard to describe with the written world. I used to joke that if there was a person with special needs in the room that they would find me, but in some ways, it's not a joke. They just do. In less that 10 minutes, I can get most people's life stories from them. I feel what people feel and I feel deeply with them. I have a special gift. I'm not even sure what to call it. There are times it is frustrating. There are times I don't want to be burdened by it. Yet, it is there. I can shut it down. I have shut it down for a few people. If I don't like you, you don't get the gift. If I don't trust you, you don't see it. So, there are some people who would question the validity of this gift. However, I know it is there. I thought after I got sick that it was gone or at least the majority of it. Then, something miraculous happen last Tuesday. Here is that story...

I had an appointment with my general doctor. She was running late. I got there a bit early and there was a family there. I don't know if it was a 'true' family, but for the sake of the story, I will call them a family. The mom and dad were young. They were at the most 25. There were 4 children. The oldest was at the most 7. The youngest at the most 6 weeks. The nurse called a name and the mom took the two middle kids with her. The dad was left with the oldest and the baby. The baby needed attention and he started to feed the baby. The oldest boy was watching the TV program. He was being good and quite. I was texting. I hadn't talked to this family. I hadn't acknowledged this family in any way. We sat there like that for 20 min. The boy asked the dad what time it was. The dad was at a loss with the baby and was looking helpless. I looked at my phone and, mind you this was the first time I even said a word to this family, looked at the dad and said "It's 4:25." The dad said, "Thank You" and told the boy it was 4:25. In less than a heartbeat, that boy moved across the room and sat next to me. He picked up a book. He looked at me and asked, "Can you read?" "Yes," I said, "but I will be called next and I will be unable to finish reading this book to you. When the nurse calls my name, I will hand this book to you and won't be able to finish it. Do you understand?" He shook his head yes and I started to read the book. Next thing I knew he started to rub my arm and then cuddled up next to me. Sure enough within 2 minutes of that the nurse called my name and I handed the book back to the boy and left for my appointment. Here it was that I felt physically horrible. I had a migraine and was not all together "there". Yet, this boy still sought me out. It didn't dawn on me to the next day. THE NEXT DAY the magnitude of what happened. I still had my gift. My gift hadn't "expired" when my health did. That little boy didn't know that I had an incurable disease and he didn't care. I've been so blindsided by my own "Walking Dead" feeling that I didn't realize that my gift was still there and it was still there to be touched and to be used. Maybe it meant nothing to that boy what happened Tuesday, but he might have just made a big difference to me. He was used by God in a way that was beyond anything else. He showed me that my gift was still there and was and is still needed.

OK...so what does that have to do with this blog and what does it have to do with the name change? As I stated earlier, I have been called to write a book about living with my illness but not letting my illness live me. As I was in church today, I was suffering physically. I was in terrible pain. My gut told me to leave. Go home. Don't be there. What good was I to be there? I persevered. I stayed. God spoke to me. He told me to continue to write. I am to write a book. I am going to do it through this blog. He also spoke about a name change. The name of the blog and the name of the book is and will be "Find Your Purpose When Living In Pain.". I'm going to spend the next 6 months or so writing in this blog. I don't know if what I write will or will not end up in the book, but a book will come out of this blog. I still don't understand but I do know that I want a "listening heart." I know that it won't be easy but I know that this week I had a "listening heart." May you have a "listening heart" this week as well.

Whack-A-Mole

I don't know who invented that game...Whack-A-Mole. Had to be some Redneck Man. Had to be. Whack-A-Mole. Name says it all. The mole pops up and you are suppose to whack it. If you play the yummy, fun version at an arcade, the moles have funny things to say "Oops...you missed" if you whacked too late or "OUCH! THAT hurt!" if you whacked that mole good. Nothing like a good game of Whack-A-Mole to get the blood pumping. The anticipation. Grab the mallet. Eyes looking at the moles in their holes just waiting, waiting, waiting for you to drop your token in the slot. The little mechanical giggling the machine is making while the lights are blinking. Whack-A-Mole! Whack-A-Mole! Whack-A-Mole! Your heart starts pumping faster. You know you are going to get all the moles. Your friends are chanting your name and screaming "Whack those suckers!"  You tense over the machine. You are ready. You slip the token in. GOOOOOOOOOO!!! The moles start popping in and out. WHACK! WHACK! WHACK! WHACK! Your heart is racing. The moles are winning! JERKS! They are taunting you! Giggling at you! WHACK! WHACK! WHACK! Your friends are screaming at you! The lights are blinking but you are not paying any attention to the lights. The machine is spewing out mechanical things and words but you are not paying any attention to the words and sounds. Just the little moles. POP! POP! WHACK! WHACK! WHACK! Sweat starts pouring down the sides of your face. Then, without warning, the moles stop coming up. The lights stop. The sounds stop. BUT you don't stop. You are in a frenzy by that time. WHACK! WHACK! WHACK! WHACK! WHACK! It takes at least 10-15 seconds for you to realize...the game is over. The moles are done. You have your points. You have either won or lost depending on how you look at it. Admit it. If you have played this game, you never stop WHACKING when the game stops. You keep hitting those silly little moles, but they have stopped. It might even take one of your friends yelling "DUDE! The game is oooovvveeerrr!!!" for you to realize the game is over...done...your time is up...over...moles are no longer taunting you. There is still that erratic part of you that thinks for a brief moment that one of those silly mechanical moles is going to pop up and taunt you just for you to WHACK it. But it is JUST a game and the moles are not real and they don't really taunt you and they don't really care. They go up and down whether you whack them or not. Yet, there is something about that game that makes you want to put another token in just to WHACK that mole ONE MORE stinkin' time. One more chance. One more moment to prove that you do have the hand/eye coordination to whack every single mole that comes up. Just one more chance. Yet, the game is set up for you to lose. It is impossible to whack all the moles because there are too many and they pop up too fast and you are only human, or is it? (Yes, it is. I really did read a study done on that silly game. Silly Redneck Man Inventor. What where you thinking causing your friends such grief in the arcades? Causing children such giggling misery? OK...WHACKING moles is great fun! I get it!!)

Today starts Intra Cranial Hypertension Awareness Month. That is the disease I have. I was diagnosed with it on July 23, 2010 following eye problems after a gallbladder surgery. I walked out of the Neuro Opthamologist office with a prescription for Diamox and the naivete/ignorance that I would be cured in a few short weeks or at the very most 6 months. Here it is September 1, 2011 and I can proudly tell you that I am no better BUT no worse than that day that I walked out of that office. I can also tell you that there is no "cure" for IH. I set out trying to "win" at the game of IH but there is no "winner". It has affected not only my immediate family but my extended family as well. Today does not start Intra Cranial Hypertension "Sympathy" Month. Today starts Intra Cranial Hypertension Awareness month. There is a difference. Just like you don't "get" all the moles when you play Whack-A-Mole, I will never "get" rid of IH. I can "hit" it with drugs. I am trying to "hit" it by losing weight. Some even try and "hit" it with shunts. While the "mole" or IH may go away and stay away sometimes "it" pops back up and like the game, the "mole" stays up and doesn't go back down. Sometimes, saying "DUDE! Stop doing what you are doing." just doesn't help. If only I knew walking into that office that I would be playing the IH "game" for the rest of my life, well...lets just say...I would have taken the time some September to become more AWARE. Love to you all!!

Darth Vader had a heart and Luke Skywalker started as a whiner

To say The Old Me represents "good" and The New Me represents "evil" is so wrong. There were things about The Old Me that I didn't like and wanted to change. There are things about The New Me that I find very nice. For example, The Old Me tended to have very little patience. Oh yes. She could be very impatient. Waiting was AGONY. The New Me is a lot more patient. She waits at doctor's offices. "Mrs. Meece, the doctor is running a little late today." The New Me shrugs and waits. Not a problem. The Old Me would be FUMING. The Old Me would be ticking off lists and things that she was missing and time wasted and oh the busy, busy, busy life she had. The New Me sees life differently than The Old Me. She appreciates time and what it can give her and never sees a late doctor as time 'wasted' but an opportunity. An opportunity to check out the people who are also waiting. An opportunity to read. An opportunity to look at colors. The New Me no longer takes her eyesight for granted. Sometimes, reading causes a headache. Sometimes, reading causes Crouching Tiger to come alive the next day, but The New Me sees it like this...tomorrow I may be blind and may miss seeing the printed word. The New Me seizes the opportunity to still read and relishes the ability to see the printed word. Before, The Old Me took that ability for granted. Today, the headache is worth it for the opportunities it gives The New Me.

I see that I need to move forward. To move forward, I should not move backwards. I can never go backwards. The Old Me should be officially dead because The Old Me existed without this disease, right? I will always live the rest of my days with disease even if it goes into remission. So, logic tells me that I need to move forward and let The Old Me go. Yet, I do not like The New Me as it is right now. I miss The Old Me. Right now, they are still two separate entities. They battle like siblings fighting for control in the house. Yet, in this case, will they merge? Become one? They have to if logic is the truth. But as human as I am...I don't exist just on logic alone. My emotions from The Old Me just cannot fit into The New Me's world and vice versa. The Old Me wants to wake up like the guy from the old TV show Dallas and find that the past 10 years was just a dream and JR was never shot and I never was sick and I could still be healthy and can change my health. Yet, we (the medical field, myself, research, etc,etc) don't know what, why, when where,how and to have the "dream" of the last 2 years erased would be just that...a dream.

To move on...to really move on, I have to make peace with both The Old Me and The New Me. To find some purpose in it all. To find understanding in it all. Is it a merge? Is it a death of The Old Me? Is it a New Me 2.0? All I know is I want a future without the drugs dragging me down and maybe I can finally discover the Me that needs to be discovered. All I do know is that life is about moving forward even when you feel like you are The Walking Dead.

The Walking Dead

I just love people who are so self-righteous. You just keep going ahead and judging me and I'll keep praying that you never really feel how I feel physically. If this is just a glorified way to feel sorry for myself or to continue to live negatively to gather the 'attention' from others, than I get it and you can quit bringing it up.

That was my post from a year ago on Facebook. If there is one thing that both The Old Me and The New Me agree on is Judgemental People. Ugg! They are everywhere. Everywhere! They walk around the planet and call themselves friends and family. Why do they feel the need to judge me because on the outside I don't look sick. Yeah...even the mirror fools me some days. I also don't have a well known disease like The Big C or a Politically Correct Disease. 'But you don't look sick' Yeah. Yeah. Yeah. I have the dark and twisty medical stuff.  There is a whole website dedicated to illnesses like that and they call themselves "Spoonies." Whole theory that is cute and sweet about not having enough spoons and I totally respect that, but unless you know the story and know the theory and understand the give and take of "spoons" you get a 'huh?' response. I, on the other hand, am a little dark and twisty and don't get cutsie pootsie with my life. Where some see spoons and the lack of spoons, I see The Walking Dead. If you don't know what it feels like to be The Walking Dead, well, you don't know what it feels like. Last night, a good friend revealed she has The Big C...Breast. DAMN! I made a comment about The Walking Dead and she looked at me like I had three heads. At first I was a little put off. Have The Big C and NOT know The Walking Dead feeling? Then it dawned on me (remember I had The Zombie visiting me yesterday and was not thinking very well) today, HER dark and twisty medical crap was just starting. SHE has NOT felt The Walking Dead feeling yet or NOT for days on end. I know I will bring up The Walking Dead and dark and twisty/evil meds three months from now and she will look at me with hollowed out eyes and I will know she will know The Walking Dead feeling.

What is The Walking Dead feeling? For those that know what I'm talking about, you just know. But for those that don't, imagine having the worst flu EVER. Think of the feeling of rolling out of bed and living your life like that day after day after day. You don't actually have the flu...just the feeling of it. You do what you have to do. You be what you have to be. You eat what you have to eat. You say what you have to say. You smile when you need to smile. You try not to cry. You live. You breathe. You are The Walking Dead. Not every day, but most days. People say "Be Grateful your alive." Ah yes...G-R-A-T-E-F-U-L Breathe. Breathe. Breathe. People say "Be positive." Ah yes...P-O-S-I-T-I-V-E Breathe. Breathe. Breathe. People say "Life could be worse." Ah yes...W-O-R-S-E Breathe. Breathe. Breathe. People say "Be Thankful." Ah yes...T-H-A-N-K-F-U-L Breathe. Breathe. Breathe. Grateful. Positive. Worse. Thankful. The Walking Dead. I'm Alive. Breathe. Breathe. Breathe. See you T-O-M--O-R-R-O-W  Breathe. Breathe. Breathe.Thanks!!

The Old Me Visit and The Zombie

The Old Me takes a trip to her old stomping grounds where she used to work up north. Time marches on. But she is sad. She feels stuck. Stuck. Stuck. Stuck. The New Me doesn't care. She lets The Old Me go because there isn't anything going on and it does give fuel to the fire later on when the depression starts and the anxiety starts. The Old Me meets up with a couple of great friends --Ducky, who tragically lost her husband a year and a half ago, and Photo Girl, who has been her best bud for a long time. Both friends know The Old Me very well and love even The New Me. Yet, The Old Me is frustrated because Ducky is moving on...new life for her. Photo Girl is moving on...life for her. The Old Me is stuck. Stuck. Stuck. Stuck. Just on a merry-go-round on a horse that goes up and down. Same old. Same old. Stuck. Stuck. Stuck. Dark, twisty medical condition... no better, no worse. Stuck. Stuck. Stuck. The Crouching Tiger starts stretching. Stretching. Stretching. Stretching. STOP!!! The Old Me screams! It does, but it uncurls It's tail leaving fire down the back. The Old Me can deal with that, but then The Zombie enters. Even The New Me doesn't control The Zombie. The Zombie brings tired. Tired. Tired. Tired. Having The Zombie squishes The Old Me because The Old Me just doesn't have the strength to fight The Zombie and The New Me takes over. *sigh* *sigh* *sigh* The Zombie feels either one of two ways...anyone can imagine either way...1)Makes The New Me feel like she is walking through water or 2)The Zombie hangs out 2 inches invisibly past the skin making it feel like The New Me is that much bigger. The Zombie squishes thinking and reasoning and makes The New Me have to even command the body. Walk. Walk. Walk. Sit. Stand. Eat. Move your hand. Get out of car. Sometimes, The Zombie makes it sooo Dark and Twisty that The New Me has to even think about breathing. Breathe. Breathe. Breathe. The New Me is NOT happy she has to drive home with The Zombie. Tired. Tired. Tired. The Old Me agrees. Maybe driving an hour to have lunch and an hour home wasn't the best idea, but she loves her friends, Ducky and Photo Girl and would do it again. The New Me is too busy to argue because The Zombie is still there.  The Old Me still feels stuck and squished because of The Zombie. Even Crouching Tiger feels oppressed when The Zombie is around. Tired. Tired. Tired. Stuck. Stuck. Stuck.

Journal From 8-18-11

To understand any more of this blog, you'll have to read what I wrote in my journal on the 18th of this month.

I stand so close to the edge. The brink. The fine line. Blah. Blah. Blah. Had a nightmare during my nap. I was falling in the abyss screaming "Help Me!!!" at the top of my lungs. There is a part of me that thinks it is the real me that I saw in my nightmare. I don't know when it happened or where but it's like I switched places with this other Kristina. This person. This impostor, who I don't even know. I took over her body and her life. I'm Alice who fell down the rabbit hole. This world. This body. Her life events are similar, but different. Just skewed enough that I'm the only one that feels something is not right, but what... I don't know. I now divide my life into two categories...The Old Me and The New Me. If you never met The Old Me, never understood The Old Me, never really "got" The Old Me -- you can't fathom The New Me. With The Old Me anchor, I look, sound, feel, behave soo ODD. There is no way to define The New Me without wanting to put complex mental medical things -- so many medical things. Dark, twisty, unknown things. I see The Old Me in my dreams. In my thoughts. In my memories. She is sad. She is waiting. She feels anger. She feels trapped. The New Me is not going to let her free. Not for a long time. Maybe never again. The New Me doesn't like it when The Old Me tries to come out. The New Me has powerful friends. One is Crouching Tiger. Crouching Tiger is pain. Terrible, terrible, terrible pain. It is always there on the edges of my head. It stays curled up for the most part but I feel it always there. It stretches at times...testing. Testing. Testing. Testing. Making me question. Dark, twisty medical things - take meds, don't, take meds, don't. It curls back up - no meds. Good. but sometimes Crouching Tiger decides "Today is THE day." It stretches and stretches and stretches until the tiger is there clawing and fighting and pushing to be free, to get out, to leave as much pain and destruction as possible. It roars it's terrible roar and It joins forces with The New Me. Dark, twisty medical things have to happen. Drugs that make The Old Me a prisoner still have to be taken. The Crouching Tiger is beaten back into it's curling position. it is NOT happy either, but dark and twisty medical things and The New Me control It as well. The New Me has the dark and twisty medical things and dark and twisty drugs on her side. They give her the power of confusion and impulsivity. They help The New Me look incompetent. The dark and twisty medical things took away The Old Me's special power of decent eyesight even with her glasses and the ability to drive after dark. So The New Me sneers at The old Me and says hateful things causing tears...lots and lots of tears which The Crouching Tiger loves. It loves the tears.