Take Up Your Mat (Chap 14)

I can't say that things really started to fall into place for me after the start of the new year but I was at least coming to terms with all that was happening to me. It was hard to accept this "new" me. I was conflicted all the time and had a horrible time just going back and forth as to who I was. It was a bit of an identity crisis. I wasn't sure where to go or what was to become of me. It was also hard to just "be still."

I started praying more and wanted to really listen to God and follow what He wanted for my life. However, I was still angry with the hand that was dealt me. I felt like I had always tried to do what was best and go where God had wanted me to go. I just felt bitter about this new body and really blamed myself for what had happened to me. If I had taken better care of myself, I would not have been in this predicament. If I had exercised more, if I had eaten better, maybe I wouldn't be here. I would constantly get the "magically delicious" lecture about my weight every time I saw any doctor. It seemed to be the one sticking point. If I lost weight, this disease "might" go into remission. I was so sick of hearing this that I wanted to either prove the doctors right or wrong.

Two things began to happen. One was a set of Bible verses that I read in one of my quite moments. Hebrews 12: 1-3 "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 the throne of God. Consider him who endured such opposition from sinful men, so that you will not grow weary and lose heart."

Run. Run with perseverance the race marked out for us. Run with perseverance the race marked out for us even if I "think" it is too hard or is a race that I don't want to do. Why? Because Jesus ran his race. He ran his race all the way to the cross. Jesus had the ultimate broken body. He died for my sins. He didn't want to run that marked race, but he did because he loved me so much that he would die for me! He endured opposition from sinful men so that I should not grow weary and lose heart. I was growing weary and losing heart. Yet, I had not been asked to do what Jesus had done for me, for you, for all of us. I was to run my race with perseverance. I was to throw off everything that hinder me and the sin that was so easily entangling me. Anger. Bitterness. My disease was entangling me. I was to throw it off as well. I was to embrace it. My race. Run my race that was marked out for me. Fix my eyes on Jesus, the author and perfecter of MY faith who for the joy set before him endured the cross for ME! I had to let go of everything and move forward and do it with joy. It was time to let it all go.

I started accepting it. My disease. My life. My future with or without ever teaching again. Whatever my race my God had for me, I would gladly accept. My life would change from that moment on. Those verses have become my lifeline. My breath of heaven. When I say "Finding your Purpose When Your Body is Broken", I will always take on those verses because if you are still alive there is and always will be a race marked out for you to run. There is a purpose for you and these verses are the living, breathing proof of that.

I had begun thinking of how I was to change. What needed to change in me. How was I to live my life differently and fully for God and in God and still deal with my disease? I was overweight...ok...obese. I hurt everywhere. I could hardly move without feeling winded and disgusted. I also needed to take back other areas of my life as well.

One day as I was reading in Mark about the friends who lowered their paralytic friend down from the roof. Jesus healed that man. At one point, Jesus asked the teachers of the law that were there "Which is easier: to say to the paralytic, 'Your sins are forgiven,' or to say 'Get up, take your mat and walk?' (Mark 2:9) It was like a lightening bolt had struck me. I had been forgiven of my sins. What was easier for Jesus to say to me at that point? I knew he was speaking directly to me through the words of the Bible? It might as well said "Kristina, which is easier to say to you 'Your sins are forgiven?' or 'Get up, take your mat and walk?' " I thought on that and thought on that. I knew I needed to "take up my mat and start walking." I wouldn't focus on distance or how fast. I would just walk for 30 minutes. I picked a date to start. May 3, 2011. Why is that date important? It was exactly one year from my gall bladder surgery.

You see, another important fact had been made known to me during this time. I stopped questioning whether or not my time with Jesus was real after the surgery. It was real. It was not imagined. It was not a figment of my imagination or a product of a brain tumor. It was a peace that passes all understanding and it was a moment that was given to me as a gift. It was a gift that is to be shared and not hidden. I have started calling May 3rd and every May from that moment on as my "May-iversaries." I plan on celebrating. On May 3, 2011, I picked up my "mat" and I dusted off my treadmill and got on it for the first time in a long time.

I only walked a quarter of a mile.

I hurt so bad after 30 minutes. I got of my treadmill. Laid down in my bed and cried. I felt defeated. I felt ashamed. How had I gotten so out of shape? How had my body become so broken?

BUT...I got back on the treadmill the next day and the next day. I sometimes walked outside. I would walk if I hurt. I walked if I had a migraine. I walked if it was raining out. I walked if it was windy out. I walked when I was happy. I walked when I was sad. I walked every single day that May. I walked every single day that June. I walked every single day that July. I walked every single day that August. I walked every single day that September. I walked every single day that October. It wasn't until November that I broke my walking streak. I walked every single day for 206 days straight. By the time I broke my streak, I was walking upwards of 3 miles at a time. Sometimes I would only walk 30 minutes, but I walked and walked and walked and walked.

I started to lose some weight. However, the biggest blessing came was that my swelling started to slowly come down in my eyes. My specialist was in awe at my perseverance. She could not believe that walking every day could help so much. I remember her asking "You walk every day?" Yes "You walk even when you have a migraine?" Yes. "You walk even when you are hurting and don't feel like it?" Yes. "You walk even when you hurt?" Yes. There were days that I would wait till my husband got home and tell him "I am going to start walking. If I pass out, call 9-1-1." There were days that I would take Vicodin right afterwards and go to bed. There were days that I hurt so bad that I would cry from that pain of it all. There were days that I cried while I walked from the pain. There were days that trying to get that 30 minutes in were very difficult do to scheduling. There were days that I had to walk when I had company. There were days when I had to make tough choices to get that 30 minutes in. No matter what, I walked each day. I cannot begin to tell you how many miles I walked. I cannot begin to tell you  how fast I walked. I can tell you that it got easier. Each day it got easier. My body became stronger. I also noticed that my headaches were not as severe. I also noticed that I started taking less and less pain medication. The most important part? I noticed a changed in my emotional state. I became happier and less stressed. I listened to music while I walked. I prayed while I walked. I meditated while I walked. It became time between me and my God.

I'd like to say my life was easy. It wasn't. I'd like to say that walking made all my symptoms disappear. It didn't. I'd like to say that everything become clear and bright and sunny. It didn't. However, I am going to say that walking made the difference in my spinal fluid level. It became a natural way for my body to reabsorb it. I really don't know how to explain it. I do know that when I would have a headache or feel the push of fluid on my spine and walked that within a half an hour of walking that I would feel better. There are several theories to this. One is that my body had found a way to reabsorb the fluid properly. Another is that endorphins my body produced helped to kill the pain that I felt from any headache or pain associated with the IH. All I know is that when I walk and now run is that I feel better physically. There is about 1/2 time span that I can hurt afterwards and I don't know if that is because of the elevated blood pressure or because of the fluid in the brain but if I wait it out I feel better than ever. I also know that I take a ton less over the counter pain meds and rarely if ever take Vicodin. It took a while to build up this natural feeling and it took daily exercise to do it but I now have this wonderful way to help when I have a headache. It sounds so oxymoronic but for me, it helps. If I feel a headache coming on and I go on a 30 minute walk, it will usually work better for me than any over the counter medicine. Not always but 70% of the time now. It has saved me from days spent in bed. It has saved me from feeling like a medicine/pill popper. It makes me feel free and strong. The hardest part was getting through the first 6 months for me. It was a struggle but I can tell you that it has been worth it for me.

In June of 2011, I bit the bullet so to speak and bought a Nook color to take back another part of my life that was missing. I missed reading. Exercising was also helping me get my attention back. I needed to take back another part that I so desperately needed. I was an avid reader and loved to read before Topamax took that away from me. Because of the uncertainty of my eyesight, it was hard to read 'regular' books and I was just way to young to be carrying around the large print books. The Nook gave me back my freedom. Exercising also started helping me focus more and helped me to keep my mind on track. I started reading easier books and ones that wouldn't frustrate me. Mostly young adult books. I started feeling like I was taking back the missing parts of me. I was still struggling with the "old" me and the "new" me but I was finally feeling like I was moving forward with my life. I was not going to let this disease defeat me or entangle me anymore.

Dawn was breaking for me. I could see a new day coming. However, I had yet to give up all to become all I could be. I had yet to die to my "old" self. I think it was scary for me to let go of what I knew and who I had been for the majority of my life. I wasn't a 'bad' person, so why would I have to give her up? I missed who I was. I still felt "dark and twisty" inside. I could see dawn breaking but the shadows threatened to swallow me up.

Just Eat a Banana or My First Set Back (Chap 13)

Teachers have a saying that goes "Fail to plan. Plan to fail." I have lived by that motto ever since college. I am a big planner. I need a plan to feel secure and to know how to move forward. I do not like surprises and not knowing what the future has in store is scary for me. So, all this IH stuff, not having a job and generally, not knowing what the future would bring me was scary for me. For me, it made me feel like I was failing and it was hard for me to cope.

However, after coming back from Mississippi, I had a vision. I had something to hold on to even if it was murky. I had no idea how I was going to write a book but I at least had a vision of me writing one. I also had a story to explain how my illness (and any one's illness) could look so deceiving. How one could look "normal" on the outside but still be a little broken (or a lot broken) on the inside. It was coming together and I was feeling better about life.

I was still taking a really nasty drug called Diamox. It was fairly uncommon drug. My pharmacy is a small, hometown pharmacy only carried a small dosage of it and when I started taking more and more of the drug had to special order it just for me. I started calling it my "evil" drug. The side effects were brutal on my body. It was helping to relieve the fluid to the point that it wasn't causing it to rise any more on my brain and/or spine, but it wasn't helping it to go down or to help my optic nerve swelling to decrease a whole lot. Every time my doctor upped the meds, I would have what I called Diamox "flu" for a few days after. I would ache and be nauseous. I would sleep most of the next few days afterwards. By the end of November, I was taking upwards of 1750 mg of the medicine. I just didn't know how much more I could take. Every time I would leave my doctor's office I would wonder how much more she could up it without it making me even more ill from the side effects than it was actually helping. I would soon find out.

The Wednesday after Thanksgiving that year, I told my youngest as I was dropping her off for school "When you get home, I'll have a HUGE surprise waiting for you when you get there." My plan was to decorate the entire living room in lights for the upcoming Christmas season. We needed some cheer in the house and I knew having the lights to turn on and twinkle would be just the thing. I had been extremely tired but that was nothing new. If I did this project in the morning, I knew I could have it done and spend the rest of the day napping and doing nothing. I had been experience some mild cramping in my shoulders and back but attributed that to how I slept the night before. When I got home from taking the kids to school, I sat down to eat my breakfast. That is when the cramping in my legs started. I have never felt such horrible cramping before in my life!! It felt like as if all my muscles were involuntarily squeezing at once. It was mostly in my left leg but my right leg would follow. It was in my calves but the pain would travel up into my hip region. It hurt so bad that I could hardly walk and I started to cry. I really had no idea what I had done or what to do. So...I called my mom.

She took off work and we headed to the ER. This time, to the "big city" ER. I knew that with my rare diagnosis that my hometown hospital might just feel more comfortable, especially since I was just recently diagnosed, if I went to the hospital that my specialist was associated with. When I was pregnant, I had lots of problems with my sciatic nerve and knew the pain associated with that nerve. It was  not that nerve.

I could barely walk by this time because the muscles were spasming and it hurt. At first, they put me in the Step-down Unit of the ER. They thought it was my sciatic nerve. I kept telling them about my diagnosis and that I KNEW what that nerve pain felt like and this WAS NOT it!! I was so incessant that they moved me and started running tests. Of course, every time I mentioned my diagnosis they looked at me like I had 3 heads. I kept saying "Call Dr. McN's office. They will explain it to you." (I learned later that they never called her office.) After all the tests were run, I found out two things: 1)My potassium level was 2.3 and 2)I had some degeneration were they had done the spinal tap. They tried to get me to drink some liquid potassium but I couldn't because of the taste. The ER sent me home with a prescription for a muscle relaxant.

I was pretty miffed. I knew something was not right and that I had a pretty high pain tolerance by this point. I called my specialist office myself. By the time I got through, I told them what had happened. The office, themselves, were a little upset that I had gone to "the big city" ER and that they were not informed. Next time, I was to not leave that ER until that office was informed. A "normal" person's potassium is suppose to be between 4.0-5.0. Mine was extremely low. I should have had what they called a Potassium Drip. My specialist would not have let me leave the hospital until that was done. However, since I had already left and I really didn't want to go back, she sent in a prescription for potassium supplements. The other part, I was NOT to fill the muscle relaxant script. If I had filled it and taken it, with the other medicines that I was on, it would have at the very least put me to sleep for days if not into a medically induced coma. The doctor's office was so relieved that I called them. I learned that day to always, ALWAYS question everything. Every prescription. Every test. Every thing that any medical personal wants you to do. I could have done serious damage had I filled that prescription. My hometown pharmacy MAY have caught that but the might not have. I could have filled the script somewhere else and I would have really been in trouble, medically speaking. That day scared me and scarred me in more ways than one.

Of course, I didn't get the lights up. My daughter came home and started bawling. "Was your 'surprise' going to the hospital?" I felt horrible after that! I promised her that it was NOT!! I told her that it was to put lights up and get ready for Christmas. I made her a vow that I would never, NEVER go to another hospital, doctor's appointment, test or anything without her knowing it. There would never be anything like that to "surprise" her again. She would always know if I was going to the hospital if I had to call the school and have them give her a note. To this day, I have kept that promise.

I have also become a mini-expert on potassium. To get potassium in a prescription form, you don't get it in milligrams. They come in MEQs or milli equivalents. Right now, I still take 80 MEQs a day. The recommended highest dosage of MEQs a day is 100. I haven't met too many people who take more than me in a prescription form.

Another one when I talk about my potassium issues is the first thing people say is, "Eat a banana." Oh how I wish it was as easy as that. Bananas are a good source of potassium, but in my research there are other foods that are actually higher in potassium than bananas. It is just bananas are the most easily accessible and convenient source. However, sweet potatoes and spinach have bananas beat in the amount of potassium in them. Also, if I need a quick source of potassium when I am sick, it is recommended that I drink the sports drinks. I really can't stand the sports drinks but they are quicker to absorb the needed electrolytes such as potassium.

Why is potassium important? I never knew until I was low on potassium. To be honest with you, I didn't really care. Now, I care a lot! You need potassium in your body to help carry the electrical impulses needed to "run" your muscles. When your muscles move they use a type of electricity to move either in a "open" or "closed" position. Potassium is used to help those electrical impulses "know" what to do and where to go when your brain/spinal cord send those electrical impulses to the muscles. So, when my leg muscles were cramping my potassium was too low and therefore, not sending the right "messages" to the muscles. This is all pretty basic but I hope you get the picture. The worst part about having too low of potassium is that your heart is a muscle. If your muscle cannot function correctly, then you have problems.

During the month of December, I would go in at least once a week, if not twice to have my blood taken to check my potassium levels. They would fluctuate some but mostly stayed within 2.8-3.4 level. I continued through January as well but once they were consistently over 3.0, I went every other week. Now I just have them checked periodically. Besides taking the supplements, two things helped with the potassium levels. The first was my specialist started weaning me off the Diamox. The second I will talk about in a later chapter.

The only problem with weaning me off the Diamox is that my specialist started me on another medication. It was a generic version of Topamax. I has heard a little about it in an on-line IH community but at that point, I was still following the plans set out for me by my specialist. I did not think anything about starting this new medication. I have to tell you that if I knew then what I know now, I would not have started taking it. The side effects are worse for me than what the Diamox side effects were.  I wasn't sure at first what was happening because of the low potassium, the weaning off the Diamox and the starting of the Topamax. I do now.

Some people, myself include, nickname Topamax "dopamax". Topamax was first marketed to be a drug to help people with seizure and then it was found to help people control their migraines by  helping prevent them. It might help prevent migraines for me but one of the things it did for me as a side effect was to slow my thinking down. I started forgetting things. My memory was shot. I really couldn't remember. I would forget words as I was speaking. I royal messed up our finances after starting to take the medicine. My spelling and grammar would be horrible. I would even forget how to spell my name at times. I would forget what people told me. I would be in the middle of a conversation, literally, hear the words someone said and have to have them repeat them to me because my brain did not comprehend what they had said. It sounded like a foreign language to me. If I didn't write things down right away, they would be lost to me. It was hard to cope during this time. I felt like an idiot had replaced me. It was worse than when I was first diagnosed. One day I showed up for counseling and cried the entire session. Sobbed and sobbed. Why? I had forgotten to wash the soap out of my hair during my shower. Who does something like that? I really felt that I had jumped onto the crazy train and even that had left me at the station of La-La Land. For what? To prevent migraines that I was still having? I couldn't hardly focus on a tv show during that time and to read a magazine left me wondering Who done it? I couldn't even play simple children's games without feeling frustrated and bored. And God wanted me to write a book about all of this...right...

That was a long winter between 2010 and 2011. I felt unfocused and drained. I was a human pin cushion. I used to be scared of needles but now I show them the spot that is the best place to draw blood. I could see the peak of dawn but it was going in slow motion. The other thing Topamax did for a while was cause hallucinations. Once I saw fairies running across my living room floor. I saw a pink unicorn. I never asked them to lunch. I usually just went to bed afterwards. Sometimes, fairies and unicorns will just do that to a person.

The First Light (Chap 12)

I once saw a show where the son stormed out screaming at his mom 'I HATE YOU!' She then replied to herself, 'Good at least you have some emotion towards me and that is better than nothing. I can live with that.'

At the end of September of 2010, I had sunk into such a deep depression that I felt nothing. I had no emotion left to give. I didn't care about anything. I lived each day but I really didn't care about anything. My children only went to school because it took more energy to keep them home. I did what was needed to survive. I spent many days not even showering. Sometimes that was because it hurt to even wash my hair. I think it even was a chore to even remember to breathe. I felt nothing. I cried very little and only because crying made the headaches worse. My pit was never ending. I was falling into nothingness. I remember very little from that time. I probably became a real-life zombie. I ate to just feel something. Not brains but food. My family was worried I would commit suicide but to be honest, even that would have taken up too much energy. I just didn't have it in me. I think I even morbidly joked with my doctor at the time that I was "cheaper" staying alive than dead because I had no life insurance. If I died, my burial cost would be hard on my family. To be honest, I didn't even care. I stayed at home as much as possible. I wore sweats as much as possible. I just moved as little as possible. I tried not to take pain meds if I could help it because Vicodin made me "feel" angry and that was just not going to happen. I'd rather live with the pressure of my headaches and the pain that to feel emotions or even care.

I remember the night very well. It was our school's homecoming. It is a BIG deal in our family. Our children dress up in our school's colors. I take pictures. We go to the game. We cheer wildly ~ win or lose. But that year, I didn't care. The family went. I stayed at home. I can't even remember if it was at the end of September or the beginning of October. My birthday is the beginning of October and I don't even remember it that year. I just had no feelings. Either way. I was a walking dead woman. It was then that my family had had enough. I had even scared my younger siblings who do not scare very easily. They were so worried that I would do physical harm to myself which looking back is sort of laughable because I was so tired of it all that I had no energy to do anything. I really didn't even care about life nor death at that point. Regardless, my parents had "hatched" a plan with my husband and they came and got me. At first, they were going to take me to the ER and have me admitted to the psych ward. I told them NO! I was not going to sit there and explain my diagnosis to people who didn't understand and didn't know how to treat me. I was tired of being a "freak" to the medical field. I was already on antidepressants. I kept going on and on about how I was NOT going to take my life. I was just tired...really, really tired. So, instead, my parents took me to their house to spend the weekend. Away from my house where I had made myself a prisoner and away from my kids. I was to have no contact with my family and to just rest.

I did take some medication that night and was told just to sleep as long as I needed. Between Friday night and Sunday morning, I estimated that I slept for close to 20 hours. Most of it was unmedicated. I was just tired. Tired of life. Tired with all the new medication. I had not listened to my body. I was depressed and beyond it all. I slept even more on Sunday and went home that evening. I was beginning to understand what I needed to do to "survive" this new me.

In early November of 2010, my brother needed someone to go with him down to the Gulf Shores of Mississippi so that my nephew's mother's family could celebrate his birthday. My family new I needed a break. I was able to book a room in a neat hotel off the beaten path. It was an old plantation house and had peacocks that roamed free. I needed some more time alone to figure it all out.

Emotions are hard when you don't understand what your future will hold. Who are you angry at? Was it my fault? Could it all have been preventable? I felt helpless and hopeless. Down and broken. I really didn't know where to go or who to turn to during this time. Then the age-old one question always remains ~ Why?

I sat on my bed and looked into the mirror. On the vanity sat the row of prescription meds all facing me. I looked at me. I looked at them. What a mess I had become. I used to be so strong. I used to be so capable. Now I was just a broken woman sitting alone in a room staring down at bottles of prescription drugs wondering what in the world had my life become? I started to pray. "God what is it you want from me? Was my time with Jesus after the surgery real? What do you want me to do with my broken body and my life? What am I to become?"

I just sat there after that prayer. I didn't know what else to say to Him. I didn't know what else to pray to Him. Complete healing? To get off all those medications? I just didn't know. But in the stillness and quietness of that moment, I heard "Write a book about it. Share your story. Be the light to those that have broken bodies." WHAT?!? ME? I didn't think I could do that. "GOD! I am NOT worthy of that!! I wouldn't even know where to start." Then, I heard it again "Write a book about your journey. Be the light to those that have broken bodies." I started crying. I just didn't think I could do that but I did think more on it.

The next morning, I was eating breakfast. How would I even explain my situation to others that the could understand? They look at me and see someone who doesn't look sick. It was a beautiful sunny day. The peacocks were out. I cannot describe that moment when I looked down at this beautiful watch my grandmother had given me. My grandmother passed away in January of 2007. In December of 2006, she gave me a watch that is costume jewelry but it is beautiful. In August of 2010, I notice the time was a little off. I fixed it, but a day later, the time was off again. It kept losing time. I knew the battery was dying. I had two choices at that point. One, I could take it off and either throw it out or put it away to never be used again. It would be useless if it was dead. Or, I could take it in and have a new battery put in. It was running slow. I could have kept fixing the time but it would have still lost time until eventually the battery would have died. On the outside, it still looked beautiful. No one else knew it was broken, but me. I didn't yell out it and scream "YOU ARE A WASTE OF SPACE! WORK RIGHT OR I'LL THROW YOU AWAY!!" I didn't pray for complete healing of the battery. I knew that God could fix the battery and keep it running for eternity. I didn't bash it or call it ugly names. I just took it to a person who could fix it. They put a new battery in it. It is still working to this day. Not all the parts are it's original parts, but I still love it. I still wear it. It still means something to me. I pray it is never lost to me. It has a little scratch now where the jeweler opening the back accidentally did to get the back open. It has character now. Only I know that part. No one else looking at that watch knows that it is broken or once was broken on the inside or has that little scratch on the back. So, if I treat that watch like that, how much more am I worth? Or anybody who has a broken body worth?

I was blown away sitting there at that table staring at the beauty of God's work. I knew then I would write that book. I just didn't know how the story would go or when I would start it. I was starting to see dawn for the first time. It was slowly emerging over the horizon for me. My darkness was ending but it was a long way from being over.

Keeping It Real (Chap 11)

"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. " {Facebook Status from August 27, 2010}

Up until this point, I have kept this story and this journey about myself. I am going to do a little bit of something different here and going to bring in some other voices during this one chapter. I'm not doing this because I want to "bash" on anyone or make anyone feel bad. I also am trying to do this as positive as possible.

Until I started having chronic pain, I really did not understand others who lived with chronic pain. Until I had experienced doctors who were condescending and lackluster, I did not understand why people who had serious medical diagnosis 'went off the beaten path.' Until I had gone through a traumatic time myself, I did not understand what it meant to "shut up" ~ literally. If I did not want to tell people what was going on, it was my right. Yet, if I chose not to spill my story, then there probably was more to the story and I had to respect all. Looks can be deceiving. People love to spew all the time, especially over social media, "Until you walk a mile in my shoes, DON'T JUDGE ME!" But, I have to admit, the funniest thing I saw, and probably the most truthful post, was a person who said "I'm too lazy to walk a mile in your shoes, so I'm just going to judge you today." I'm not saying that it was funny in a "Haha...laugh to my sides hurt" funny but a funny in a "it's probably the most truthful thing anyone has ever posted."

People judge. Perception is the number one thing that does it in for me. You see a 5 second clip on TV and you've already decided on the guilt or innocent (most likely guilt) of someone who has been arrested even tho in this country we were built on the premise of "innocent until proven guilty". It is like that with chronic pain. In this country, we have to show our pain for people to believe our pain, but show too much pain and they get tired of it really fast or they really don't understand to the point of becoming frustrated with us. Then, they tend to shut down.

By August of 2010, I was getting the "we are not going to take it any more" from you. Some of it was from family. I even received a really hurtful, hateful letter from an extended family member. I admit that I did not handle it in the best of ways. However, her use of language and lack of understanding was uncalled for during that time. Suddenly, I had become the 'bad' guy in all of this. If I could go back and do things differently, I might have but I still feel like it was just handled all wrong by both parties. She did not know probably even a quarter of what I had went through or going through. She was young but that did not excuse her behavior. I'd like to say it made me tough and want to fight through it all but it sent me into more of an anger/depression. I think they (the family) were trying to do what they thought was best for me (or maybe they didn't really care) and the family. I really don't know. Maybe it made them feel good to finally tell me after all those years how they really felt about me. All I know is that it just made things a lot worse for me mentally, physically, emotionally and even with all my relationship. I really couldn't trust anyone any more including those who I was closest to. {I'd like to add a side bar to all of this. If you are reading this and are contemplating sending a note to a loved one about their disease and how they are handling it or not handling it, I would tell you to think long and hard about it. Those words are still out there. I just re-read them again today. They still hurt just as much today as they did the day I received them. You may think you are doing the person you love good, but it will hurt them deeply. Written words are forever. Your loved one needs your support but they don't need your 'tough' love. Also, if you feel the need to say things to them verbally, always make sure to have another person present. I know my medication makes my perception off balance at time. If you ever feel the need to present 'tough' love to your loved one, do it with thought and when you are not overly emotional. Do not do it in writing. Just love your loved one and support their decisions. I say that all based on my own experiences.}

I have started to realize that not everyone was being cruel either. Sometimes they were just ignorant. Ignorant of my situation. Ignorant of the way the body works, how my medicine works, and the specialty of my doctor. There are times that I have to bite my tongue and nod. However, I would like to add if you are reading this if you are not fully up to date on any one's medical history, medicines, surgeries and such, please don't hand out medical advice unless you really are a medical doctor. It is so frustrating to me to have someone say "have you tried this drug? or that treatment?" Sometimes it has nothing to do with my problem or situation and to explain it all to you would take days. I'm not being rude, just real. As another IH related to me (and I think all IHers would relate to this), we do not complain every day of headaches to glean sympathy from you. We really do have headaches every do. It's part of our disease. I know that hearing about it every day gets tiring. People would understand if a cancer patient had nausea every day from chemo. It's not sympathy we are looking for and we are not being rude, just real.

Another IH named April said "I have a "What I wish you would know..." What I wish you would know is that I don't feel overwhelmed, hopeless or helpless because of Intracranial Hypertension and the other illnesses I deal with every day. I feel this way because it's so hard to find a doctor that is willing to listen, ponder and explore. When medical providers throw their arms in the air and tell you there is nothing they can do for you time and time again, it's hard to not feel like you're alone. That's my "I wish you would know."

Here's one from my friend Karen who has chronic pain do to Fibromyalgia "Just because I don't whine 24/7 doesn't mean I'm not in pain; it's because I doubt anyone wants to hear it...and I don't want to give in to the pain. Just because today I can work in the flowerbeds today doesn't mean that I can do it again tomorrow. The fact that my house is not tidy is not a reflection on how I was raised or how I want to live; it's a reflection of my illness."

One of the biggest blessings came that summer when my aunt and two of her youth from her church's youth group came and did some deep cleaning in my kitchen and bathroom. The house had gone downhill since I had gotten sick. When you live in chronic pain, your house and cleaning seem to be the part that takes the biggest "hit." It was so nice to have a clean house. However, I have also took several "hits" over the last couple years because I have been at home and yet I cannot keep a totally clean house. Cleaning house takes a lot of energy. I may be able to clean for a couple of hours but that could be JUST the laundry or JUST the kitchen or JUST the bathroom, etc. The entire house is never cleaned at once. I hear all the time "Get your kids to help." I can but it takes just as much energy to get them to work and to get one area cleaned as well. Then, it is the same problem. The entire house is not cleaned at one time. One of my dreams is to one day have a non-for-profit cleaning business that goes in and cleans your house or helps you clean your house when you have sickness even if you are able to work a full-time job. I know my one aunt has Chron's. She works full-time but it is so much energy that it hard for her to come home and clean as well. I would like to offer the service to parents that have sick children as well. You WANT to live in a clean house, but it is hard to do when you live with a energy-sapping illness/disease/disorder day in and day out.

Here is the response from my friend Mel who had a brain tumor and has lived with is lasting affects for the last 5 years (these are responses from a question I asked on Facebook) "Well I completely agree with Karen for one thing. Another for me is since I have some memory loss along with my brain injury, some people think I am stupid and I am not. I may forget easily, stumble across words and even sometimes over react because my emotional center is damaged as well but people really are quick to judge or use me as the butt of jokes sometimes because of those things. A lot of times I laugh it off and sometimes I even make fun of myself but it's really not funny. I don't think people realize that. It's frustrating and hard to deal with sometimes. Can you imagine not remembering certain things about your kids when they were younger? or becoming so overwhelmed with "normal" every day life that you completely shut down? Or even struggling some days with a headache that is so bad you can barely remember a simple sentence? All of these things are very real for me."

Memory loss is so hard for those of us living with disorders like Mel and mine. The medicines that I am on also cause problems with cognition. One of the most frustrating things for me is spelling. Things look right and I may post things or even print them. Then, I come back and see all these spelling errors. Some words were even spelled/misspelled in the same sentence. It looks so random and 'crazy' to me. I does bother me and bother me a lot. I, like Mel, will laugh it off but I don't understand. The other day I posted a date on Facebook and it should have been the current year but I posted "2010". Why did I not catch that?!? It really bothered me! I don't know if it is a misfiring between the eye and the brain or if it is in the brain itself. The more people know and understand, the better it is for me. I am not a product of my spelling/grammar errors.

Here is a response from my friend Pam who has a diagnosis of Lupus "Big one for me that Karen mentioned, just because I can do something usually physical today does not mean I can do it tomorrow!! Every single day is different. Flares come without any warning and stay as long as they like...no control over that!"

It is hard to be dancing one night and be limping the next night.

Then, there are the parents of children who have disabilities. My friend Carie has a daughter who has auto-immune deficiency. She shares, "I'm not a crazy, control freak, over protective Mom just because I don't let my daughter go to story time at the library where kids share toys. My daughter has immune defientcy & hot croup 4 times n a month & a half from that place. .... I don't enjoy taking my daughter constantly to the dr, I just want her to always hear me tell her I love her. Shes 2 1/2 yrs old & has had 3 sets of eartubes put in. She's going on Her 4th. Have you ever been told by a dr "Sometimes w/ a sick child it can feel like 3 children." I have, but I wouldn't trade her for anything n the world!!"


As I stated before, not being rude, just keeping it real.

We all struggle. We all fight for are small piece of the world. We all have a purpose. Just some of us struggle, fight and have to find our purpose with a broken body. I don't understand fully as to what the reasoning is behind all of that is. I once described it as a puzzle. Our lives are a puzzle. We don't have the picture to look at to know how the pieces go and fit in. We pick up the piece and try it here and there. Sometimes we try to cram a certain piece just knowing it has to fit but it doesn't. Yet, when several piece fall into place, the picture becomes a bit clearer and we look back and *sigh* with contentment until we start putting another piece into place. Sometimes, we need others to look at our puzzle to help fit in the pieces or take out the pieces that don't fit quite right. Sometimes we just need someone to smooth a bumpy one down a little or roughen one up to fit a little better. Regardless, our puzzles are beautiful pictures. We are not islands alone drifting meaninglessly. You have me and I have you. Never let us forget that. We are here for a reason. Never let anyone make you feel that you are less than. If they won't walk a mile in your shoes, it's OK. They are the lazy one. Not you.

Did You Eat Too Much Polar Bear Liver? (Chap 10)

"Please be sending lots of prayers and positive thoughts today. At 3:30, I will be having the spinal tap. I'm not scared because I assume it is a lot like the epiderals I got with the c-sections, but I'm still stressed out and nervous big time. Thanks for all the prayers and positive thoughts!!" {Facebook Status from Morning of August 5, 2010}

"Spinal Tap was a no go. Something was not right with my spine and to top it off I was on the verge of passing out. I'm so disappoint that words cannot even begin to express my frustration from it all. They are going to schedule a different type of spinal tap where they will use an x-ray machine and put me out. I'm feeling very low right now along with feeling sorry for myself. Please pray for me!! :0(" {Facebook Status from Afternoon of August 5, 2010}

"Just depressed and tired. Need to go to bed and not try and wrestle with God. His plan is more than I can imagine, but I'm having a hard time understanding His reasoning behind all of this. As Eric's grandmother Elsie said once, "All is fair in God's perfect timing." I just have to keep telling myself that." {Facebook status from evening of August 5, 2010}

"Thanks for everything. I prayed so hard that the spinal tap yesterday would give me relief from the pain that I began to honestly believe it was 'the answer' to the pain. God just has other plans for me. The other proceedure has not been set up yet. Just going to rest today. Thanks for those that are watching my kids for me esp Crystal Goff who is taking on Jillian for the day!" {Facebook status from August 6, 2010}

"All the proceedures have been set up for next week. On Wed the 11th, I have to have a CAT Scan. On Thurs the 12th, I'm having the sedated, x-rayed spinal tap. Then I'll probably be bed ridden for the 13th. The 13th is our anniversary and I'm sure that is not the type of bed ridden one would want for that, but oh well. :0)" {Facebook status from August 6, 2010}

"Last night, I was laying down to go to bed when Eric yelled "Wait!" He ran in holding a very frightened cat and started moving the cat up and down over me. He put the cat down and told me that he had just given me a "cat scan." Him and Hannah laughed hysterically. Oh boy!!! :0)" {Facebook status from August 7, 2010}

"Eric's version of a 'cat scan' actually took longer than the real version at Carle. Now to get through the next two days. I'm more stressed at being bed ridden for 24 hours than the actual proceedure. Thanks for any prayers or positive thoughts you have. :0)" {Facebook status from August 11, 2010}

"Can't eat anything after 7 this morning, so I got up early and had breakfast with Eric before he went to work. I know he's worried about everything, but we thought his time would be better 'wasted' at work than just sitting around waiting for me. Daniel is watching the kids and mom is taking me to the appt. Didn't sleep well last night, but I'll have plenty of time to rest later. :0)" {Facebook Status from Morning of August 12, 2010}

"Please pray for me. I'm in a lot of pain tonite. Thanks." {Facebook status from Evening of August 12, 2010}

"Rough, Rough, ROUGH morning!!!! Dr called and told me to take one of my meds which I did and am feeling a little better. Thank you for your prayers! Still feel horrible, but am doing better than I was at 5 this morning." {Facebook status from Morning of August 13, 2010}

"by Eric....Kris is having a very bad day. Looks like what was a migraine last night has turned into an even worse headache. She is in a little pain laying down but when she sits or stands the pain is terrible. Please keep her in your prayers." {Facebook status from August 14, 2010}

"At 10:30 today I was rushed by ambulance to Carle.Basically, the hole where they did the spinal tap was leaking fluid slowly causing low-pressure headache. They did what they called a 'blood patch.' I was able to come home around 3. Feeling so much better!! Now just to rest, rest, rest. Thanks for your payers!!! Thanks to the Minions for helping with the kids so Eric could be with me!" {Facebook Status from August 14, 2014}

I was so looking forward to this procedure. I had heard nothing but great things about it. I had heard that it would help with the headaches. I had heard that it would help with the pressure. I had even heard that just having one done might possibly send me into remission. I was pumped. I was ready to have it done. I was told that this procedure was like letting air out of a tire that was overinflated. The whole scenario was so glorious to think about that I would fall asleep imagining how wonderful I would feel after the procedure. I wanted the spinal tap done so bad that I would have camped out for hours just to get it done if they would have let me.

The original procedure was scheduled to be done by Dr. McN in her office on August the 5th at 3 pm. I wasn't feeling good that day but I was not to be deterred by much and I wanted that procedure done. I wanted to be able to say "bye-bye" to the headaches that still plagued me. I wanted to be able to get this monkey off my back and resume a normal life. If I could have "thought" my way through the process, it would have been done. However, every time she tried to start the procedure something would go numb and I felt like I was going to throw-up. Not waiting to take chances, she canceled it and said that she would schedule a spinal tap to be done under a huge x-ray machine for a few weeks later. I was crushed!!! I felt like a failure! I went home that night angry and bitter. What was wrong with my body that it wouldn't allow me the relief I needed?!?

Once again I spent that night in anger conversation with God. What else could I do? What else could be done? When was the pain going to end? I begged him to take me to heaven. I just wanted to be a part of the peace that he had just allowed me to be a part of not 3 months earlier. Why could the procedure not be successful today? I just didn't understand and I tried hard not to cry because tears only made the pain/pressure worse.

I had to have a CAT Scan done on the 11th to make sure there were no "problems" in my brain that would prevent me from a "successful" spinal tap. I found this rather ironic since I just had a MRI in May but that was too long of a time and so much could have happened during that time. No big tumors showed up and I showed up for the spinal tap that was scheduled for 10 a.m. on August 12, 2010.

I remember this being the first time I started to "hate" time and all that it came with. It was what I originally talked about in Chapter one. My mother was with me at the time but all I could hear was the clicking of the clock in the prep room. It was so annoying. All I could think was "this better help with the pain." They wheeled me back to the surgical room. I was prepped and my back was shot up with a numbing agent. I started with my imaging again with the bird and flying away to help with the anxieties I was having through this entire process.

They stuck me with the spinal tap needle. My opening pressure reading was only 19. Which is "high" but it is "normal high". Some people with IH have opening pressure readings as high as 40, 50 and even 60. I felt so confused. But then the troubles began. I started going numb on my left side. I remember the nurse asking me how I was and I said, "I can't feel my left side." Now I thought I said this rather normally but she had me repeat it twice. Oh my!! I love medical professionals. You know they are being professionals but there is a certain kind of 'professional' panic. It isn't a "normal" panic but you know they are secretly looking at each other because suddenly things begin to happen. They try to move the table so that I'm almost standing straight up (even though I'm strapped to the table). They have me move more to my right side. They put a type a drug in my IV which I think was to try and relax me some. Up to this point they did not talk to me much and I was just doing my imaging in my head but they were making me respond by asking questions about everything. One nurse was wiping drool from my mouth. I was giggling over that. I think they gave me some good drugs because I don't think the drool was very funny now. The doctor finished the spinal tap and they made me lay there until I could feel my fingers and toes. I really don't know how long that took. My mom, on the other hand, said that she was worried because it seemed like I was gone for longer than it should have been.

I knew that it was a "rough" procedure because the normal time I should have been sent home would have been by 2 that afternoon. However, because of what had happened, the earliest they were going to let me go was 4 p.m. Only if I felt like things were going well. I knew that I wasn't feeling quite right but I just was paralyzed on my left-side and giggling over drool coming out of my mouth. I wasn't for sure how I was suppose to feel. I knew I had a headache but up to that point I have always had a headache. Looking back, I should have told the nurse the truth but I told her I was doing fine and I was wheeled out of there by 4 p.m.

My headache never went away. I tried to do everything I could to make it go away. I even tried drinking pop which tasted horrible with the medication I was taking . By the evening of August 13th, I was not doing so well. By the morning of August 14th, I was screaming in agony. My body would think that I had to go to the bathroom. I would get out of bed only to have my entire body feel the need to crumple to the floor. I would slither, not crawl, but slither to the bathroom. I would try to go only to end up throwing up. Then crumple back onto the floor and slither back to my bed because it was the only place I felt "ok" if that is a term to use. This went on for a few hours. To say that everyone around me was scared, that would be an understatement. I just know I was in survival mode. I was in so much pain that I couldn't even think of anything or anyone else. My body was perilously close to going over the edge. I know my husband called my mother and they ended up calling 911.

The ambulance ended up taking me back to the ER where I had the spinal tap done. It was determined that I was leaking spinal fluid and needed a blood patch. When the doctor who was going to do the blood patch was talking to me about my diagnosis, he asked "Did you eat too much Polar Bear liver?" What? Even in the horrendous pain I was in, I said "I don't eat any liver. I don't eat chicken, cow, pork and definitely NOT Polar Bear." {I later discovered in my research that IH was first diagnosed in men who were trapped in an Arctic region where all they had to live off of was Polar Bear meat. You can contract IH by having too much Vitamin A in your system. These men ate too much Polar Bear liver which has extremely dangerous concentration of Vitamin A in it. The funniest part is, even if I WANTED to eat Polar Bear liver I'm not sure I would even know where to buy it. However, it was not how I 'contracted' this lovely disease/disorder.}

By the time they started doing the blood patch, I was dehydrated they had a hard time trying to draw blood to even get enough blood to do the patch. Then, they had trouble filling the hole. I cannot even express how much pain this whole entire process was from start to finish. Even still, when given the option to take a wheel chair to my car or walk out of the ER, I chose to walk. I was not going to let all this dictate who I was or how I was going to be treated.

Those 72 hours where the most painful I have ever experienced up to this point in my life. The pain was so bad at times that I almost went into an unconscious state and I might have. Yet, there was a purpose for that pain. I can say that I have lived through it. I do chose not to have any more spinal taps done because of it. It is my choice. There are times when I ponder if having one would help the pressure, but I know it is a temporary fix. I know that the likelihood of what happened the first time would happened again. I have talked it over with Dr. McN. She agrees with me. I will refuse all spinal taps from now on unless there is a significant medical reason behind it. No relief from my headaches is worth it. I will go blind before I put myself through this procedure again. I also believe that if a person has too many of these taps that the body just quits find natural routes to rid itself of the fluid because it "thinks" that the tap will do it for it. Now that it just my opinion. There is nothing backing it up other than what I have observed over time. I also have seen the damage it does when I person has too many spinal taps. I have permanent damage to that one spot just from that one time. I can't imagine what 15, 20 or even 30+ spinal taps will do to a spinal cord. I don't judge. I know that people do what is best for them. It is just what I chose to do for myself. I do put out the caution flag for those that may be new to the game. There is so little we know about this disease/disorder. I, personally, think there are more natural ways to help with the pressure than following the path of too many spinal taps. Yet...I have to admit...I, myself, am still tempted.

Unfortunately, after the spinal tap, my depression and anxiety would spiral out of control. In a couple of months, I hit an all time low with my life. Dawn was coming down the bend but it was still not quite there yet.

"Here's a funny for you: I was talking to the nurse at Carle ~ Nurse:Did you have the proceedure at E.D. Me: What? I don't have erectile dysfunction Nurse: (very slowly) Did you have the proceedure done at the EMERGANCY DEPARTMENT? Me: Yeah...I'm so sorry!! I'm such a ninny Nurse: Don't worry about it. (Sure...I'm sure you're still laughing about it and will for a whole week!)" {Facebook status from August 20, 2010 ~ still had a sense of humor sometimes :0)}

Welcome to Your New World (Chap 9)

"So silly, but the closer it gets to Friday the more worried I get. Made a list of symptoms big and small with my mom. Two full pages. How sad is that?!? I don't even know what this dr is going to do for sure, but the appointment is at the minimum of 2 hours. I'm so nervous..." {Facebook status July 21, 2010}

"Heading out to the dr's soon. Had nightmares about it all night. Probably won't be anything like my dreams. Starting off the day really tired. Praying for answers or at least the start of answers." {Facebook status July 23, 2010}

"Quick update: Specialist DID diagnose me. I am starting a treatment plan with meds and a spinal tap scheduled for August 5th. More will be done after that. I AM NOT CRAZY!! I'll talk about it more later...gonna go rest up for now. PS...still pretty serious stuff, please continue to pray for me :0)" {Facebook status July 23, 2010}

Here is what I wrote about my appointment that night:

I went to see a specialist this morning, Friday July 23. She is a Neuro Opthomologist. She did a thorough exam taking almost ½ hour to do a medical history. After it was all done, she gave me her findings. There are two things medically wrong with me.

The first, and most pressing, is called a Psuedotumor Cerebri (PTC). In plain English, my body is producing way too much spinal fluid and it is not draining or absorbing the fluid as it normally should. Because of this, it is causing the nerves in my eyes to swell. It has greatly affected the right eye and she said that it was extremely swollen. She seemed, in mom’s and mine opinion, to be a little upset that the neurosurgeon didn’t get me in to see her sooner. She said that the fluid could have been really concentrated in the first MRI causing the ‘mass’. When I did the second MRI, it was more high powered and was able to see ‘through’ the fluid. I might have a small tumor, in her opinion, but we wouldn’t be able to really see it until after the fluid is at a more normal level.

The second issue is just the migraines in and of themselves. They are affected by the fluid, but just because I have the fluid doesn’t necessarily mean that I should be having the migraines. Once we start getting the first problem more under control, I will start seeing a Neurologist to start treating my migraines.

As of today, the specialist gave me a really strong diaretic to start taking twice daily to help relieve the pressure. On August 5th, I will be having a spinal tap for problem #1. The spinal tap will tell us how much pressure, if there are any abnormal cells and if there is an infection. With that knowledge, we will be able to really fine-tune the treatment for the PTC. The doctor told me today that the treatment for the PTC will unfortunately make my migraines worse and that I would get worse before I get better. However, I’m so happy to know that I WILL GET BETTER!!

Another unfortunate side effect is that I cannot get a job or even try to work while going through treatment because the medications will be harsh and we won’t know how I’ll take to them. She said that doing my best to take care of my family was work enough. From God’s mouth through hers. Therefore, I will not be taking classes in the fall either. My focus will totally into getting better!!
Another thing that made me feel better already was that the doctor told me that the pain would be enough to cause the change in my personality and the depression. It is a emotional reaction to the physical pain and not because I’m crazy or just ‘making up’ symptoms. The dizziness, nausea, extreme fatigue and pain is all part of the physical problems.

Please continue praying for me and the family. Feel free to pass this on and share it. I am posting this both on Facebook and sending it through email to some that are not on FB. Please pray that I take to the medications with minimal side effects, that I am able to get through the worse parts and that I’m able to take care of my family.Please pray for Eric and the kids as this will be a hard, emotional time for them as well. God is good. He is faithful. Prayer is powerful. Thank you!!

"Was feeling sorry for myself last night and questioned "Why Me?" "Why now?" I, of course, got the answer back "Why NOT you? and Why NOT now?" Then a huge peace came over me as I knew huge rewards would be waiting for me at the end of my struggles. In Jesus name, I press on...."{ Facebook Status on July 26, 2010}

That summer in my Sunday School class for adults, we started studying Revelations. Really studying it with an in depth look into the wonderful book based on John's visions of future events. I have read Revelations several times and this was my second time with a study on the book. There are many theories as to whether Born Again Believers will be raptured before or after the 7 years of tribulation but our group was in the belief that we will be (myself included)raptured before the tribulation. One lady of the group lamented about when she was looking down that she will be sad to see her family and friends going through the 7 years of tribulation, so sad that she probably would even cry. I was so dumbfounded. I am also a little outspoken at times. I said "Not me. I am not even going to watch if I can help it. There are no tears in heaven. I will be enjoying my new body so much that I will be in heaven while in heaven."

There is a danger when you start living in chronic pain. Other people's pain doesn't phase you much. In fact, sometimes you're apathetic towards it and lose all sympathy to others who also live in pain. You especially start losing sympathy towards others who do not live in chronic pain. Your "Pain-o-meter" shifts. You no longer feel pain the same as you did before. You no longer feel sorry for others in pain. Yet, at the same time you start to relate really well to others in pain. You start to relate so well in fact, that it almost becomes a contest to see who hurts the most at times. You start comparing your pain like it was a beauty pageant category. We always rate our pain on a scale of 0-10 and sometimes even go over 10 because pain hurts so bad. Why do we do this because the medical professionals have to do this to us so that they can get a 'clearer' picture of our pain. Every time I walk in, they ask "On a scale of 0-10, with 0 being no pain and 10 being the worst you've every felt, how would you rate your pain?" I've gotten really coy about this question. I have started asking, "Do you want me to rate it on a 'normal' person's scale or do you want me to rate it on my scale?" To say that some of my pain would send a 'normal' person to the ER with a number of 9 where I would rate it at a 6 would not be out of the "norm" for me. So to say I had very little sympathy for people in pain whether at that moment in time or in the future during the Tribulation was the truth.

I think this feeling is true with the medical professionals that I run into as well. They have developed an apathy towards pain and people's perception of pain as well. It's not that the don't care, but that they have heard it all and seen it all. The specialist that I see is a nice woman and I will refer to her throughout the rest of this story as Dr. McN. Yet, she gives me "toughness" when I want someone to baby me. That first visit, I was intimidated. She has 4 degrees on her wall. She has her MD degree. She has an Optometry degree. She has her Neurology degree. And last, but not least, she has her Neuro-Optometry degree. Didn't matter. She was down to earth and we hit it off rather well. I do know some people who feel like she doesn't know a lot about this rare disease but over time there isn't a lot out there about it and I do feel like she does keep up about as best she can. Plus, I do refuse a few procedures and we will talk about that in the future. She was the first person who was a professional that made me feel hope. She was the first one to not make me feel like it was all a psychological/mental problem. I remember telling her that if it was, to just admit me to the psych ward because I was ready for it all to be over and I couldn't figure out how to "think" it away. She laughed and said that I would never be able to "think" it away. She was the first one to give me a plan.

However, there were a few things that happened that were, looking back, I wish I "knew then what I knew now." I left there thinking that a spinal tap and the meds would help me get better lickety split. For some people, they do, but for most, they don't. IH is a life long disease. Once you are diagnosed with it. You have it for life. Even if all my symptoms go away. I will just "go into remission." She didn't tell me that. I thought I would be cured. Another one was how bad the medicine's side effects made me feel. They helped with the pressure in my head, but the side effects were sometimes worse than that pressure and the headaches. The only reason I would have chosen the side effects over the headaches is because the "evil" meds (as I dubbed them) would not tear my stomach up like the medicines I was taking to help get rid of my headaches. Some of the side effects included severe tingling of the hands, feet and face. I also felt faint the first few weeks. Every time they would up my meds, I would call it the "flu" because that is exactly how it felt the first couple of days after upping my meds. I would be achy, nauseated and tired. Third, I still had the headaches. They didn't go away. They were not as bad but I still had them. It was frustrating but it was the truth.

The other thing I got was the "magically delicious" discussion about losing weight. It became my favorite part of every visit with her. I wanted her to show me the medical book where all these doctors memorized the line because it sounded almost to the wording of what the other eye doctor said. "If you lose the weight, all your medical problems might be solved." When in doubt, tell your patient to lose the weight. It might help whatever ails them.

I'd like to say that I saw dawn for the first time leaving her office but it was a 'false' start. However, it was the most hope and the most answers I had had in this whole entire process. I didn't leave crying for the first time. I do have to say that dilated eyes will make you feel weird for 5-6 hours and alway have a designated driver, but it didn't make me cry. We actually went out for Chinese food that night. Who celebrates  getting a life-long diagnoses of a rare disorder? I guess our family does.

Anger is a Dish Best Served...(Chap 8)

"is beyond frustrated!! I can't even get to it all on this stupid status. Eric is upset. My mom is upset. I told them both I could fight my own battles. Long story short, no one knows the results of the second MRI. The nurse from two weeks ago was just reading off the first MRI. UGGG!! I could have a terminal tumor and no one knows at this point. :0(" {Facebook status from June 14, 2010}

"Little more info for ya now that I've calmed down a little. Went to the eye dr at Gailey today. Eyes/pressure are about the same. However, he asked if I had heard from the neurosurgeon and did he schedule another MRI. Yes...did have the MRI done. No...have not heard a word from him." {Facebook status from June 14, 2010}

"Other than being tired and a little frustrated over the way things are, I'm actually feeling pretty good physically. Headache is just a 'ghost' pain right now. My eye sight isn't too blurry. I always pray every night that I'll wake up and be completely healed. If this is the closest I get at this point, I'm not complaining! :0)" {Facebook status from June 15, 2010}

"To all my FB family and friends: I promise that I will call the neurosurgeon's office tomorrow in the morning. If worse comes to worse, I will demand from Carle itself a copy of the MRI and I will go pick it up myself. I know I have a right for that copy. Problem might be having to wait even longer, but it is a start. Any other words of advice? I'm just so lost as to what to do here..." {Facebook status from June 15, 2010}

"Feeling better now. Really had a melt-down tonight and over the silly dust pan being missing. Isn't it silly how I can hold it together for the 'tough' stuff and then lose it over something stupid? I keep telling myself all this too shall pass. And as my favorite fish Dori says in Finding Nemo "Keep on swimming. Keep on swimming. Keep on swimming." :0)" {Facebook status from June 15, 2010}

"Good news: Got call from PCP who talked to neurosurgeon and got second MRI report today faxed to him. Looks like there is no mass on the brain. So, likely diagnosis is the psuedotumor. Now just to wait to see what the other dr from Carle will say. She will be able to help if it is a psuedotumor. AHGG! Feels like I've been on a rollarcoaster the last six weeks." {Facebook status from June 16, 2010}

"Personally, I think I've had this since Jillian's horrific pg. It wasn't until I was driving tons with EI that it probably aggravated it causing all those migraines. My theory is the gall bladder surgery somehow re-aggrevated it causing more fluid and the eye problems. Now to get serious and get it taken care of." {Facebook status from June 17, 2010}

"It is safe to say that I am an angry dieter. YEP! Trying to eat right and watch what I eat makes me angry because that is one of the emotions I stuff down with food. I think it is one of the reasons I give up because I do not like to feel anger. :0(" {Facebook status from June 23, 2010}

"is sure you don't want to know how I'm feeling today. Not being able to eat your emotions away doesn't make for a happy camper. Just don't make the mistake my mom did and call me. LOL" {Facebook status from June 23, 2010}

"Oh Dear Jesus PLEASE help my attitude!! My son is whining and crying over silly things and is getting on my nerves, but am in charge of getting him to his ballgame 30 min away. I know you have given me tons of patience because I'm not in jail nor has DCFS came to take him away because of me losing all control with him.I just need some calmness so the above mention doesn't happen either before or after his game. Amen!" {Facebook status from June 24, 2010}

"is having the worst headache!!!! Haven't had one this bad in a loooong time. Vicaden, migraine meds and other OTC isn't touching it. Praying it settles down soon or will be heading to the ER. Feeling a bit better since I finally got on FB." {Facebook status from June 27, 2010}

"Please pray for us. Eric and I have a big decision to make. What we will decide in the next couple of weeks will greatly affect the family. We want to do what's best for us, but we want to make sure that it is God's will." {Facebook status from June 28, 2010}

"Frustrated is just not the right word right now. I'm worn out. Gonna lay down and take a nap.
:0(" {Facebook status from June 29, 2010}

"PCP put me on new antidepressant today. Maybe it will make my life better. I'm just frustrated with so many levels of my life right now that it sure can't make it worse, or can it? LOL At least after tonight no more ball games. Win or lose, I'm proud of my bubby and his team!" {Facebook status from June 30, 2010}

"Before April 19th, my life was clicking into place. Things were looking up. I had accomplished a huge goal. Now, I'm back to the old depressed person that existed around December. Nothing seems to be going right and nothing seems to be clicking into place. I'm back to feeling lost and insecure and 6 shades of crazy. *sigh*" {Facebook status from July 2, 2010}

If you haven't noticed before now, I am on Facebook a lot. I am a person that needs to express herself and have used journaling in the past. For me, this was a way to journal. The downfall was that it was done in front of the friends on my friends list. I had set up my privacy so that it was as private as Facebook would allow. However, this "spilling" of my anguish and life did not always bode well with others. My frustration, anger, depression was confusing and for lack of a better term, frustrating to other people.

Just weeks before, I had such a "tangible" problem. A huge brain tumor as grotesque and horrible as it sounded was something that people could grasp and relate to when they thought of medical issues and future problems. What I had going on was or seemed so minor and petty to some. I was still walking, talking and breathing. I have always respected the medical profession. Sometimes I respected them to the point that I would never question their judgement or what advice they would give me. If they waited, I would wait. If they handed me medication, I would take it as the package instructed me. If they said that I was to have a proceedure, I would do it. If they said to be here, I would go there. I very rarely said "no" to anything up to this point. Every doctor has each patient's best interest at heart, right?

So, to have this rare disease or to have a tumor or to have nothing at all but my own crazy, mixed up world was so frustrating. I hurt so bad and nobody could feel it or see it but me. All I wanted was validation. Yet, I'm not sure sympathy or what I was getting was the validation that I needed. I was so confused and torn. I didn't want to be sick. I didn't want my life to be falling apart. I really didn't want to be depressed and frustrated. Most of all, I didn't want to be in pain.

We live in a society that doesn't want to hear all the "bad" stuff. It is the bottom line. We want everyone to be grateful and happy with what they have. We don't want people to talk about their grief or their afflictions. Most of the time, it is hard for us to know what to say to them. When a woman in her mid-30s says she is in pain but looks healthy other than being obese, we want to question her integrity. She seems to live in a world where medicine is available. Our brains have a hard time wrapping around the concept that if we don't or can't use or 5 senses that maybe it doesn't really exists. Or there is the age old advice that tough love might cure all that ails us. If you just "stick it to them", point it out, be blunt that it will bring them to the right frame of mind. It's the old "she just needs a good butt kicking" mentality that makes us sometimes one of the harshest critics to one another. While I got a good dose of sympathy from people during this time, I also got a good dose of the other "tough love", for lack of a better term, as well. On top of the pain that nobody could really feel but me, this did not help anything when it came to the anger I was already feeling. I was my own worst critic and I had others knocking on my virtual doorsteps telling me that I was "lazy" and "depressing" and a "hypochondriac" amongst other things.

I started researching this disorder called Pseudo Tumor Cerebri or Intra Cranial Hypertension. I was looking for books written by people who were living a positive lifestyle. Anything or anyone that said I was going to come out to the other side and be the victor. I knew only one other person who had this disease at this point in time. She was living a good life. She seemed positive. She never spoke of this craziness or anger or frustration. I felt so alone in the world. I couldn't go to many of my children's baseball games because of the headaches. I couldn't go out much in general. Was I destined for a life of living in my bed? Sleeping the day away and not knowing what the night would bring? I was already angry at the world. Angry at my doctors. Angry at myself. I was an intelligent person. I needed to know where I had gone wrong. Nobody really understood. They tried to understand. They tried to listen but they didn't understand. All I wanted was to either be healed and live life again or to die. One or the other. There was no middle ground. There was no in between. There was no other option. Fix me or completely break me.


When I was a little girl there was a machine that if you held it really tight it would tell you where you fell on the Love-O-Meter. You put your quarter in and squeezed. It was so much fun because you always needed to know where you fell on the Love-O-Meter when you are 10. Yet, during this time of my life, there was so little love going on. No Love-O-Meter for me. People were probably praying double time but all I felt was anger which turned inward became depression. I needed Light so badly. I needed someone to say "I was you and am you. I am still you but I am happy and living and breathing." I needed the me I am today. I told my husband in a moment of such utter dispare that I felt I was falling into an black hole that has no end. I was falling and I didn't know when I would ever find my way out. I think that was the first night he was ever really scared for me. July 23rd was coming but it still wasn't dawn for me yet. At that point in my life, I don't think I even cared if daylight ever would come again.