"Don't look it up on the internet" (Chap 4?)

To know me...really know me...you have to know that I am a driven person. I cannot stop. I make a plan and stick with it till the goal is accomplished or I have exhausted all avenues that is possible. Even when I have exhausted all avenues, I look for more avenues. It can be very daunting and scary for those around me. It makes me look pushy at times. I have been been known to manipulate and sometimes will work on a project above all else. I have been called several names because of this. I would look on the outside like I took it all in stride, but on the inside it tore me up. Many times I would cry over criticism and harsh words. Just the perception of someone thinking of me as less than what I wanted to be seen as would be devastating. I was your proverbial hard-shell soft-centered person. Realistically I knew not everyone liked me or would like me. I could stand there and take a verbal lashing like a champ. But behind closed doors I would melt like yesterday's chocolate left in 90 degrees on a sunny day.

After the surgery I had to pick up the pieces of my life. It was time to move on and up. Fix the parts that were not right. I was, on the outside, still doing what needed to be done. Laundry was being hung out on the line again. My daughter was being dropped off and picked up from preschool. I was picking up my kids from school. I was cleaning the house as best as I could with a preschooler. Yet, things were not right.

Nights were the worst. I was having horrific headaches. I was crying most of the time. I was having a terrible time sleeping. I was doing dishes at 2 in the morning. I would watch the sunrise and count how many cars would go up and down my street between midnight and the time I would finally fall asleep. I was agitated and frustrated. I took all kinds of over the counter medicines to help. When they failed, I was taking the Vicodin that was left from my surgery.

Then, I started noticing a spider in my vision. It was in my right eye. It wasn't a real spider. It was a black hole in my peripheral vision. When I closed my eyes it's legs would show and it looked like I had a spider on the inside of my eyelid. It was "weird" but I didn't think anything of it. I have always had vision problems. I've worn glasses since I was 6 years old. I've had an astigmatism. Sometimes when I couldn't sleep I would play a little game to see if the "spider" was there and if it would move. Could I see it "here"? Could I see it "there"? Was it visible with only my right eye? It really didn't bug me for some strange reason. The headaches bugged me. The pressure in my face bugged me. But, the spider did not. He was comforting. He was a non-painful diversion to everything else I had going on. So weird looking back. I should have been freaking out and running to the nearest Opthomologist, but I just let it comfort me.

About a week and a half after surgery, I started noticing another crazy things with my eyes. When I was driving and I would stop at a stop sign and look out and back in my car, my eyes would start to "blink". Not the eye itself, but the vision. It was like mini explosions. OK...this DID freak me out. However, it only happened when I was driving. I started thinking that everything had to be associated with my recent surgery. Maybe gas was still trapped in my retina or something. All I knew is I had the spider and now the mini-explosions. Crazy things were happening with my eyes.

I went to a conference that weekend with some friends and just casually mentioned my eyes to them. They were concerned and said that it was possible my retina might have detached slightly during the surgery and that I REALLY needed to go see an Opthomologist ASAP. OK...at this point, I was a little freaked out. Did I share that with anyone? Not really. I'm in control, right?

I made a call that Monday and set up an appointment for myself and my daughter who was going into kindergarten that next year to get our eyes checked. I still didn't think anything was seriously wrong. I thought maybe my astigmatism was getting worse and I needed new glasses. Looking back, I should not have done that but hindsight's always 20/20. Haha

My daughter does her appointment and she is perfect for an almost 5 year old. I, however, start mine and things are not looking too good. YIKES! Next thing I know, the doctor wants to take a picture of my eye. I said that I saw that it would cost me since that isn't covered by the medical card. He said that he was so concerned that he wouldn't charge me for it. THAT is when my heart starts racing a little. THAT is when my blood pressure starts to go up a little. THAT is when I knew I should have had another adult there. THAT is when I knew my 4 year old should not have been when with me that day.

He took the pictures and showed me. I look at them like a preschooler looks at a picture book. You know you should be paying attention but you just can't. He explained everything to me that day, but I cannot recall most of what he said. It was like listening to the wind. I remember only a few things and that is pressure on the brain and too much spinal fluid and a stern warning "Don't look it up on the Internet! It will just scare you!" WHOOOOAAAAA!! Buddy...you are doing a fine job of that right here in this little office off of Walmart because it is the only place I could get in really quick on the card! I wanted to melt into the linoleum tiles while my 4 year old was chatting and coloring not 25 feet away from me. The last step was to dilate my eyes. My eyes are stubborn as me and he had to put in the drops not once, but twice. "Yep," he says, "I'm pretty sure you have..." Of course, as of today, I know what he said but that day ~ he could of said peanut butter and jelly and it would have made more sense to me. I was scared. I knew my life was going to change and I wanted to get the heck out of that office, out of Walmart and definitely OUT OF MY BODY!

The office set me up an appointment with another specialist who could confirm the diagnosis. One step up the food chain, so to speak. I knew then it was serious because Monday was a holiday and the good doctor would squeeze me in on Tuesday. This appointment would not be with my daughter and I would have to find an adult to go with me.

I had to wait in Walmart for the double dilation to go down some. We're so blessed these days with our Walmarts. I walked around with my daughter, blinded by the dilation. I picked out a nice clip-on pair of sunglasses. By the grace of God, we made the 25 min trip home. I look back and wonder what would have happened if I got pulled over that day with my eyes dilated they way they were. I'm sooo thankful we were not.

FB Statuses from that time:
"Well SHOT!! No more exercising for a while! Having eye issues that might be caused by intercranium pressure. UGG!! Going next Tuesday to a specialist. Fun! Fun! My body is falling apart!" {written May 21, 2010 .... really didn't understand it all....called it "inter" I think I was also going for the word "shoot" and not "shot" :0)}

"I don't know whether to be angry or cry, so I'm choosing to feel nothing and live in denial for the moment. Is that a good thing? I don't know.Trying not to medicate myself with food is tough for me as well. At least it is me going through all this and not one of my kids and for that I am greatful!" {written May 22, 2010}

"Another great start with the sun shining. I'm not going to complain of the heat because I need it to be sunny for my own sanity!! {written May  23, 2010}

"Sometimes I wonder why I even bother..." {written May 24, 2010}

The Original Blessing (Chapter 3?)

There were a few nights I would lay awake before the surgery planning my life after the surgery...after the pain. I just knew that after my gall bladder was taken out that all would be fine. My life would return to normal. I would enjoy that summer with my children. I would, of course, find a wonderful teaching job to return to in the fall. We would begin living the lifestyle we had before. I fantasized about the trips we would take again. The presents I could buy again. The charities I could give to once again. There were dangers to that. One..I could not predict the future or see into the future. I think if I could, I maybe wouldn't even have had the surgery. But, that would have ended a lot of things there and what fun would that have been? But the most dangerous part? God was no where in that picture. I have to admit. I was playing a dangerous Patty Cake game with God. I was your proverbial "good" girl. I gave my life to Christ at the young age of 6. I re-dedicated my life at 14. I followed all the rules. I was a prayer, a church goer and I could walk a good walk and talk a good talk. However, I had spent most of my life angry at God. As someone once told me "Anger turned inward turns into depression." I'll go one step further...it also made me crippled. Spiritually and definitely emotionally crippled. Oh I loved God and Jesus with all my heart, but I was angry. I could go into it all but that would be another book for another time. However, I can tell you that in all my planning at this moment that God was no where to be found.

He had blessed us that fall when things were falling apart. I gave Him credit for a lot. I knew that He was a very real and vital part of who I was. I had a solid core and I could rip to shred the most seasoned theological professional. But I was angry at Him. Bitterly, Bitterly angry. THIS did not make it any easier. This pain did NOT make my anger toward him any healthier or easier or make me want to praise Him. It did leave me confused and torn. Now, most people would have said that they  did not know this about me. Probably would have called me a "hypocrite" during that time? I don't know. I did know that I was saved and going to heaven. NO ONE could take that from me. I had been angry at God for so long that I didn't even know that I was angry at God. When did this revelation strike me...well...that is a little bit down the road. So, you'll just have to keep reading or waiting to find out.

The day of the surgery opened up in roaring pain. I couldn't take any medicine that night. Then, the nurses struggled to put in an IV because I was dehydrated. Could life get any more painful? I would think. I never question that any more, but that day I did. I remember the last thought I had before the gas mask came down was "Thank God this will all be over soon."

The next thing I remember is being surrounded by such peace. It was so peaceful. I cannot describe in humanly words the feeling I felt. I remember the color white and just being embraced in peace. I just wanted to stay in that place and feel that way forever. I never wanted to leave. I thought of no one and nothing else. Then I heard "Kristina. Kristina." calling me back to the other side. I looked up into Jesus' face and said "If I go back, I will have to leave you." I remember his eyes. They haunt me to this day. Beautiful almond colored eyes. The love from them just is indescribable. If I close my eyes, I can still see his face in my mind but to sit and describe it in written words is too hard to do. The peace and the love is something I will never forget. But then he smiled at me. Oh the smile. That smile was one that looking back just melts me into tears every time I think about it. It held a beauty that I could have only imagined up to that point. Then, he faded away. He never said a word to me. Yet...his presence spoke volumes upon volumes. I then woke up to the recovery room.

People have asked me if I died that day or if my heart stopped. As far as I know, I didn't die that day. My heart never stopped. My blood pressure never dropped. I have a theory behind the visit but if I share it with you now then it will take away from the story.

I stayed in the hospital over night. I got to come home the next night. I was in tremendous pain. It was the first time I thought about my visit with Jesus. It was the first time I got really angry. It was the first time I asked why he didn't just take me to heaven with him. It wouldn't be my last....

Painmagaddon (chapter 2?)

You could probably argue that my body has been "broken" for most of my life. I started wearing glasses at the age of 6. I have suffered from depression from high school onward. I was diagnosed with Poly cystic Ovarian Syndrome which cause fertility issues in my late 20's. This developed into anxiety problems probably pairing up with my depression. I was diagnosed with Binge Eating Disorder which I'm sure goes hand in hand with the depression/anxiety. Most of these do play into this story and will be told throughout but this story...this moment...where I felt that all was lost, hopeless and nothing more was to ever be gained started in early 2010. This is where we begin our adventure.

I have a running joke. It is a play off a famous comedian's set. I call it "You might have a broken body..." If you wonder, what is a "broken body"? How do I know I have a "broken body"? I say that you know because when you say certain things to another person and they shake their heads in agreement but others look puzzled...you both probably have "broken bodies." So one of the running jokes I have is...If you can recall all the significant dates of important medical events of your life but you might misspell your name or forget your birthday during the same half hour, you might have a broken body. So, on that note, all dates in here are fairly accurate but I might misspell my name. LOL

I had quit my teaching job in July of 2008 to go to work as a service coordinator to have more time with my preschool daughter and to just switch jobs. I was traveling more. Towards April of 2009, I was having some memory issues but started having migraines but attributed it to the job. It continued to get worse. In July of that year, the migraines, memory issues, depression, anxiety was horrible. At the request of my medical doctor and counselor. I made the decision to quit my job. I left it in August of 2009. Thinking that was all I needed to get better, I started to substitute teach and do temporary jobs. There were other things that made my stress levels high and things did not improve much.

Always one to try to improve myself, I tried to exercise more. Helped some but not much. I had problems with the one school district and was never really asked to sub again. I couldn't pass the one validation test for the temp job and wasn't asked back there. I was so frustrated. What was going on with me? Stress? Life? Me? Migraines were becoming common place. Depression was of course an issue. So, I decided in March/April that I was going to try baking. I asked my aunt for some recipes. She sent me her recipe for her Rave Review Cake.

I made the cake. It is a layered cake filled with nuts. The icing has nuts in it and then you brown coconut and place it on the icing as well. It is a true masterpiece when it is done. I made it the weekend of April 19th and I enjoyed a lot of that cake. By Monday, I was sick. Very, very sick. I hurt on my right-hand side of my stomach. We won't go into detail of the other grossities that were going on. I knew it wasn't my appendix because it was taken out during my 20th week of pregnancy with my last child. I went to the ER. Test were ran. They gave me medicine. They said it was the flu and sent me home. Told me to keep taking Ibuprofen. This is important because it plays into the story. By Tuesday, I was hurting so bad that I saw my regular doctor. I couldn't keep anything down (or up). He scheduled me for a gall bladder test for the next day. I got home only to get a call from the hospital. Do to the volcano erupting over Iceland they couldn't get the radioactive isotopes they needed till Thursday. I'd have to wait till then. UGG! I just kept taking the Ibuprofen and trying to stay hydrated as best as I could.

Thursday finally got there. The first hour of the test was uncomfortable but not a problem. Then the poor tech lady put the stuff in to "mimic" eating an equivalent of a cheeseburger and fries. Within seconds I screamed "JESUS KILL ME OR HEAL ME!" She had to calm me down but it was excruciating. I saw the surgeon the next day. My gallbladder was functioning at 5%. He would do surgery ASAP. We talked and I thought we were going to do it the next week. He started asking the basic question. Got to "When was the last time you took Ibuprofen?" I said, "Today." I knew the minute he looked at me that it was a huge problem. He said, "We are going to have to wait at least 10 days to do the surgery because you might bleed out if we don't." I started crying at that point. I hurt sooo bad. However, I am a big girl and pain is pain. He said he could give me Vicodin for the pain if I could wait it out. I told him I would. We scheduled the surgery for May 3, 2010.

The Vicodin did help. I was able to live with the pain. Looking back, the pain at that time was nothing but I thought it was worse than being in labor. It was also my initiation with Vicodin. It helped with the pain but I also realized it changed my personality. I realized that on Vicodin I become very hateful and spiteful. I'm not sure what is worse being hateful and in pain or having the edge taken off from medication and being hateful and spiteful. I just know I didn't like who Vicodin made me become. However, I was naive at the time and thought that after the surgery all would be perfect again. Just hold on, I'd think, better days have got to be ahead.

Time (Chapter 1?)

Tick.Tick.Tick. It had become the most annoying sound. I could pick it out any where. I could hear it everywhere. It first annoyed me laying there in a darkened hospital room. My mother's voice droning in the background. I had to listen just enough to her to follow her conversation. But that ticking sound was just making me angry. Tick.Tick.Tick. Never stopping. It was everywhere in the hospital that day. The prep room. The procedure room. Back to the prep room. Then, it was there at home. Same noise. Went into my room and turned on the fan and the air conditioner to drown out that noise but the light from another was still there to haunt me. No matter where I went there was always a tick or a click or a stamp or SOMETHING to remind me that time was there. Time was moving on. Time kept going. I hated those clocks. I was taught that "hate" was a strong word and that we should never "hate" anything or anybody. But, believe me, I hated time. I hated the fact that it reminded me every day that I was still alive. I was still breathing I was still around. It was the only thing that kept moving when I didn't want to keep going. Time was everywhere. Time for doctor's appointments. Time for medical procedures. Certain time for medicines. Take this one in the morning. Take this one at night. Time was stamped on my bracelets every time I went to the hospital. Time was stamped on the papers that went in and out with me. Time was stamped on every vial drawn from my body. I hated time. It reminded me that I was awake when most people were asleep. It stole from me during the day because I would be so tired that I would fall asleep and OOPS hours would go by! Yes...I hated time and the noise that went with it.

What did I want from time? What would have made me happy? I was in pain. Would anything but being pain free have made me happy? There were times that I would fantasize about time just standing still. A freeze frame so to speak. Just an animated, non-moving, time-standing-still forever. NOT death. Just a freeze frame. It so hard to explain. Just a moment in time where I didn't have to think about time or time moving on or focus on the future. I look back at maybe how lonely that existence was for me. I was surrounded by family and friends and all I wanted to was just for it all to end. Pain will do that to you. Pain will suck everything from you. It will leave you feeling weak and vulnerable. It makes you question your own existence. It makes you hate time. Wost of all...it makes you wonder why God leaves you on this earth.

When I was started this journey I researched looking for books or something to give me hope. I found a bunch of research based books. This discouraged me more. Was I the only one who cried in pain at 2 am? Was I the only one who wanted to live more while living with my broken body? Was it possible to live a full life while still living with a debilitating rare disorder at an older age? Was it possible to get over my anger at God?

I'm going to let you go on my journey that has been mine for the past couple of years. I hope it gives you strength, encouragement but most of all hope in your purpose of your life. Every one's story is unique. My path will be different from yours, but in the end, I think the basic feelings are the same. I am not perfect but I am blessed. May you be blessed as well.

In the beginning (THE BOOK)

God has been laying on my heart for many years to write a book about IH, my life and most importantly to give encouragement to those that need it. I have balked. I have half-heartedly attempted. Until this year, there wasn't much for me to say. Then, my world has exploded but in a new and exciting way. So much has happened and changes have happened so rapidly that it has been hard to wrap my mind around. I am a writer. I express so much through the written word (and ironically am a terrible speller LOL). I love to write and feel through the words on the page and screen. I have wanted to write a book and thought that my best chance would be through children's literature. So, who would have thought that I would be writing to adults? Not me! LOL Yet, I needed this book 2 years ago. I needed a ray of light, a beam of a rainbow, a smidgen of hope when I thought all was lost. THAT is what God wants from me. Then...silly me...I have been putting it off...kids home for the summer...should I write it in Microsoft Word? Should I do this? Should I do that? Then today I had a moment of my old insecurities. People said "Go blog". Duh! Go back to your roots, Kristina. Then...silly me...I thought...start a brand new one? Nope! I'm going to start with the old one. Every day I'm going to blog this book. I'll post it for people to read. Give hope. Light. Love. It's my purpose now. You can go back and read what I blogged before. Some so dark and tragic. Some will repeat in the book. Some will just be. I have always been a writer. I have journals, stories, poems, songs from when I was a child. God had a plan for me from the moment I was knitted in the womb. I just had to go through so much to find it. It might inspire you. It might scare you. It might do nothing for you. But for me...IT CHANGED ME! So here's to the beginning but is it really the beginning? Kristina