This is FREEDOM!

We live in a society that wants things now. We are continually bombarded with the message that we deserve instant gratification. If we pray for something we want it now. If we buy something we want it now. If we order carry out we want it now. If we start a new job we want to be a manager or owner right now. You get the idea. Life was never designed for us to have instant gratification. I believe that human beings were designed to work hard for everything.

My newly adopted little sister is horrible when it comes to patience. She demands everything right now! I know it is because of hurt she experienced in her past, but I am constantly reminding her to “grow some patience” that her needs will be met just not instantly. Slowly but surely she is learning that patience is good and instant satisfaction in not a must in life. Every time I give her that advice I am reminding myself that I need to do the same thing. See, I want my shunt now. I want to be able to exercise again right now. I want to be able to do everything right now.

It takes time to retrain your body to handle the ups and downs of the high CSF pressure. It takes time to learn how to live with the rollercoaster ride called “Unshunted Hydrocephalus”. It takes time to heal spiritually. It takes time for a broken heart to heal. It takes time for nerves to heal. As I start to feel myself having the “now” attitude I have to remind myself “It takes time”. The “it takes time” attitude has brought me to a new level of peace and freedom!

I feel like a little girl standing in front of a giant mountain and I know I have to get to the other side. I tend to be terrified. How is little ol’ me going to make it?!? By remembering it takes time. I make sure to look at the one step in front of me (not the whole mountain). One step, one minute, one day at a time. The steps I take today will prepare me for the steps I take tomorrow and so on, until I make it to the other side. If I trip today and scrape my knee then, clean up the scratched knee, let it go, and keep on going tomorrow. No need to beat myself up over a bad day. After all, I am only human.

What is Going On?

Recent situations in my life have left me wondering what is going on in people’s heads. Do people understand the damage that words and actions can cause? Do they have any idea what they just said is mixing in with other lies that have been said to people and will continue to cause more damage to that person?

I have realized the answer, in my case, is no. People have absolutely no idea what all I am going through. Yes, I am open about certain parts of my journey, but not all of them. No one of this Earth knows all of it. I have seen the way people have reacted to my hydrocephalus so I am in no hurry to open up about the rest. However, if you have hydro or any other medical condition, you can probably relate with all the “other things” that can come up. Hydrocephalus in itself is enough to deal with but there is the cause of the hydro, the occasional cancer scare, anything that occurs from the damage caused by untreated hydro, seizures, memory loss, balance issues, nerve damage, chronic pain, hormonal changes due to the extra pressure in your brain squeezing everything, vision damage, vision changes, vision loss, hearing loss, I could go on and on about the “other things”. Oh and do not forget the medical bills that start stacking up! Yet, people cannot see any of it. They can only hear you speak of it and that is only if they are listening.

I was walking into the living room this afternoon when I saw my little sister, who also has hydrocephalus, playing on the floor. Out of nowhere this realization hit me, Jesus knows! I stood still for a moment in shock. Now I had too much coffee so my brain was going a mile a minute. I looked over at my mom who was sitting on the couch and exclaimed,” Oh my goodness, Mom! Jesus knows pain! After the beating He took I am sure He had developed hydrocephalus and an obvious TBI!” I looked down at my sister who at this point had stopped playing with her toys and was looking at me smiling ear to ear and giggling with joy at the thought of Jesus knowing the pain! I ran over to her and talked about how He knows (she cannot speak but communicated other ways). I began to do a little dance around the room with excitement in the realization that Jesus knows.

Often times when someone is going through a huge change in their life they feel alone. I know I feel that way more than not. There are the precious few people in my life who drop a note here and there to let me know that they are there for me, I am not alone, and I am loved. I am so thankful for them. It is so easy for the negative comments to mix together and over shadow the positive ones. So, next time someone gives me their opinion about how I am wrong for basically breathing, I am going to remember that they cannot see everything I am going through. They truly have no idea what they are saying or the damage that it can cause. I am trying extremely hard to send the negative comments straight to Hell where they belong and focus on the positive ones.

Where is the love? Part 2 (The Conclusion)

After undergoing a tremendous amount of stress and humiliation that obviously left me broken and bruised with blood running out of my wounded heart, I decided the best thing was for me to take a weekend to get away from anyone and everyone related to my town, church, or job. But where was I going to go? I began to look back to the beginning of the summer before my diagnosis when I was having massive migraine pain that would last for weeks at a time. I remember telling my mom multiple times that when this was all over I wanted to go see Megan, a friend I have not seen in 9 years. Even times when I was in the ER, I talked about how I wanted to get out of there and this whole thing to be over so I could go visit this friend and her family. Of course this was when I thought my migraines would be an easy fix and I would be back in shape in no time. Boy was I wrong about the length of this journey.

I quickly realized that if I waited to go visit when it was all over, I would never get to go. A couple weeks ago I was stable enough to drive a long distance. I had to venture over a mountain range to get there so I had to figure out a plan of action. I talked to a medical genius, ok well maybe he is not a genius, but he sure knows his stuff anyways, he was able to give me advice about how to safely attempt this awesome road trip. First, I would have my list of medication, diagnosis, neurologist and neurosurgeon names and phone numbers that I always have with me right behind my drivers’ license so if I end up in a wreck or faint somewhere they can find my info right away. Then, I would take the drive slow making sure to stop as needed to let the pressure in my head level out and take medicine for the pain as needed. Then off on an adventure I went hoping for some clarity.

The drive went great. I took an extra couple hours to get there as per the plan. When I arrived I was so wiped out from the battle that has been raging around me and in me. As I hugged my friend and met her daughter for the first time it felt as if we had never lost contact with each other. When I entered their home I immediately felt an overwhelming sense of acceptance. I felt like I could walk in and hang out on their couch and watch T.V. as if I was a part of the family.

Megan and I spent the entire weekend catching up with our lives and our family’s lives. I was able to talk to her about my need for a shunt and my hydrocephalus and I was accepted. We made jokes and laughed about my shunt and brain surgery as well as ways to attempt to get someone to implant the device even with my lack of insurance. I told her something’s people have said and done over the last few months in regards to my Hydro. She was appalled looked me in the eyes and said, “Kristi, Hydrocephalus is not a sin”! For some reason hearing her say that brought such peace to my soul. I lay on the couch and watched T.V. with Megan’s sister and basked in the wonderful feeling of acceptance and understanding. As the weekend came to an end I realized that God had taken my broken, bruised, and bloody heart and began healing it. But God was not just healing it; it was more like He was making it better and stronger.

So, now I know where the love is. The love is all around us. Sometimes you have to look for it like I did reconnecting with a friend after 9 years. I know that I am not going through this alone and not everyone thinks I am gross or offensive with my need for a shunt. I got to giggle about it with a friend who thinks it is cool in some crazy weird way. This is a sad thing to lose friends over, but if people do not want to help support me as I fight for my life, then I guess they really are not friends anyways. No one deserves to be bullied, harassed, made fun of, or turned away because of their medical needs. It is never ok for someone to do that and no one has to stand there and take it. Although there will always be people in my life that try to stand in my way or try to hold me back because I now have “special needs”, I do not have to take it. It just means I will have to fight harder to get where I want to go in life. Which is ok, I am an amazing fighter. 😀

Where is the love? Part 1

I have been pondering this post for quite some time now. How should I go about writing about this subject without offending people? Maybe I should not write about it in a desperate attempt to sweep it under the rug. I started blogging to help myself cope and perhaps help others who are going through difficult situations know they are not alone. Therefore my conclusion is that it would be wrong of me to try and pretend that this is not a part of life by trying to sweep it under the rug and it would not benefit any of the people I wish to help through this blog or my life. Now with all of that said I will begin one of the hardest blogs I have written thus far.

I think everyone who is given a life altering diagnosis can relate with the fear that comes along with it. In the beginning my fear was based on the pain I would have to endure. As is evident in my blogs, that fear has changed to the fear that no one will understand. They will abandon and reject me because of their lack of understanding. Next to pain, I think this is one of the deepest fears that people have throughout their lives.

I was hoping that my fears would be proven to be ridiculous nonsense, but now I see that all along my fears have been legitimate concerns. I have watched many people that I love and loved me, turn away from me. People want the “old me” back, but as anyone with hydrocephalus can attest to, this is now me. I remember making this statement a few years ago to someone, “You cannot just have the good parts of me and not the bad. You can have all of me or none of me”. I figure if someone cannot accept me in the hard times, then they do not deserve me in the good times.

I have been working hard to educate people about special needs for years. I understand that people do not know what hydrocephalus is. We live in a day and age where information is at our fingertips. Because of this, I think most ignorance is not from lack of opportunity to learn but by the choice to not learn. Now I am working to help educate people about what is going on with me. I have found that you cannot educate a rock. If people are not willing to learn then there is nothing more you can do. The best thing to do at that point is to know you did your best and let it go so you can have some form of peace.

Now I would normally share a story about a situation that I encountered that would help shed more light on the subject. However, I have been asked by the administration of the facility that it occurred in to not discuss any of the matter with anyone related to said facility. So, out of respect for the administration and the fact that the facility had nothing to do with the situation I will not share details in case any of my readers are affiliated with said facility. 

With that said, I will say most people have no idea how painful it is to have an adult stand in front of a group of people and tell the whole group how gross your shunt is. Saying that my shunt is gross and offends people is saying the fact I am alive is gross and offends people. Treatment for hydrocephalus is not like treatment for cancer. Hydrocephalus treatments do not make it go away they only make it so a person can live. There is still no cure. I expected to be made fun of from time to time. However, I never thought as an adult I would have to undergo the ridicule and humiliation that children do on the playground. Is this what the rest of my life is going to be like? Am I always going to be turned away because of people’s lack of understanding? Will I ever meet people who think my shunt is cool in some crazy weird way and can laugh and giggle with me about it? How many more friends will I have to lose? Am I really that horrible of a human being that I need to be bullied because I am not perfect?

Steady My Heart

Everything I have felt through all of this is said in this song. Some nights when the pain or pressure has been so terrible I have sat and listened to this song over and over as I cry. God has brought some amazing healing to me through it. Although I have learned that it is ok to trust people and accept help from them, they are still human. Sometimes people cannot help because they are too hurt or scared, they have their own problems going on, or occasionally they just refuse to. I am sure every one of my readers has run into these situations. In any of these situations it is ok. Run to God, He is the one we really need to steady our hearts. (The song is a beautiful song that is worth listening to as well).

Kari Jobe
Steady My Heart lyrics

Songwriters: BRONLEEWE, MATT / GLOVER, BEN / JOBE, KARI

Wish it could be easy

Why is life so messy
Why is pain a part of us
There are days I feel like
Nothing ever goes right
Sometimes it just hurts so much

But You’re here
You’re real
I know I can trust You

Even when it hurts
Even when it’s hard
Even when it all just falls apart
I will run to You
Cause I know that You are
Lover of my soul
Healer of my scars
You steady my heart (x2)

I’m not gonna worry
I know that You got me
Right inside the palm of your hand
Each and every moment
What’s good and what gets broken
Happens just the way that You plan

And I will run to You
You’re my refuge in Your arms
And I will sing to You
Cause of everything You are

You steady my heart (x2)

[ Lyrics from: http://www.lyricsmode.com/lyrics/k/kari_jobe/steady_my_heart.html ]

“Break my heart for what breaks Yours”

Last Wednesday I woke up with a horrible ache in my heart, not unlike a broken heart. I was unsure why because nothing had happened the night before, I did not have any bad dreams that occasionally leave me torn for the rest of the following day. Where was this pain in my heart coming from and why? As I began to wake up and be a bit more coherent, I realized my heart was heavy as if a weight had been tide to it and I felt like weeping. Questions started to form in my mind. Suddenly I realized that God had put these things on my heart and questions in my mind. It became very apparent to me that I was going to be changed that day.

Here is a post I put up that morning;

Today my heart is heavy and I feel like weeping. Probably will end that way. Do you know how many children are being raise by nurses in hospitals because they have no family? Do you know how many children are being starved beyond an inch of their life for years (causing a 15 year old to be the size of a 2 year old) just so their country can make money? Do you know how many children sit in hospitals, hospices, or homes and know that this may be their last day? Do you know how many children will never know the comfort of a loving hug? Do you know how many children will never be able to call someone mom or dad? Do you know how many people know and still do nothing? Do you know? I’m starting to…

As the day pressed on, I continued to feel this pain. I realized that the aching in my heart was a tiny glimpse of the aching that is in God’s heart over these injustices. Some of the thoughts that rolled through my mind were, “why are more people not doing things to help”, “Why do people turn their backs to these things”, and “what happens to these children when people do not reach out”?

The answers to these questions were answered by the end of the day. People do not do more because they are scared that they are not good enough to reach out to their fellow man. They have fallen prey to the lie that it takes a “special kind of person” to do anything for someone. People turn their backs to the truth because it hurts. I can relate I have had to do the same at times.

However, the thing that changed me the most that day was the realization that babies without turn into children without, who turn into teens without, who turn into adults without unless someone steps in to intervene. There are people out there of every age who need someone to step out of their comfort zone. It is always scary and sometimes painful to try something new. It does not take a “special kind of person” to do it, it just takes a willing one. There are so many ways to reach out. How about baking some cookies for a family you know are going through hard times? Or taking a young adult out to eat once in a while to help them see their worth? Give an elderly person you know a hug; you never know that might be the only hug they get that week. It does not matter your age or likes. There is something that every human being can be doing to help. I’m still wondering about and searching for my thing to do.

 

Choices at the Crossroads

The more I learn about the people in the Bible, the more I realize every one of them had flaws. Yet, God chose them. Often times they would be shocked at God’s choice and question Him. As if God made a mistake or forgot about their shortcomings. However, God knew ALL of their issues and still chose them. I can just picture the generic conversation that God had with His people.

God would say, “Bob, I need you to go do ____”. Bob responds, “Oh, well God don’t you think Jim Bob would do a better job than me? I think You should have him do it”.  God, who knows all of his people better than they know themselves, shakes his head and says, “No, Bob this is for you to do. Jim Bob has other things to do”. Then God, with his head buried in his hands says to Himself, “OMG I cannot believe how stupid these people think I am”! haha

Also, He made a way for his people to fulfill their destinies to spite their shortcomings. They did have to accept the mission and submit themselves to God. However, they never had to walk the journey alone. He was always there beside them guiding their every step and protecting them against the odds.

So, here I am at the beginning of a journey. I have been scared, upset, angry, glad, joyful, and every other emotion you can think of. I know the things that God has told me about my purpose but have started to doubt my ability. Maybe God should have chosen someone else. I have had the generic conversation with God all about how I am not strong enough to do this. This last week God has been answering my questions. I have realized that when He created me He knew that I would face this mountain; He knows exactly what I will face through it and has prepared me for it. Now I sit at a cross roads where I can make a choice. Finally, I have a choice in all of this. I can choose to face this mountain knowing that God is going to guide and walk it with me and defend me or I can try to do it alone. Hmm well that is a tough one. I have decided that I will choose to walk this journey that my God has called me to. I will trust that He has a plan and a purpose for my life. I will do my best to remember that I am not alone. I will stand up to this mountain with my head held high knowing that I can overcome this with help from God. I will also welcome His protection and grace.

Does this mean I will not have meltdowns from time to time, cry a lot, or occasionally be angry? Absolutely not, I will still have all the natural emotions that a person would have through this. After all God created emotions and has emotions of His own. This means that when I have those moments of doubt I will be able to rest at easy knowing my God has my back. I am human, I have flaws, and I cannot do this alone. God is God, He has no flaws, and He will be with me. With Him I know I can face this.

I know everyone faces different mountains throughout their lives and I bet my readers are facing some right now. My question to you is, “What choice will you make”?

A lot of Nothing and a Little of Everything

I have decided to ramble about all that has been going on since my world got turned upside down.

I have been dealing with so many emotions over the last couple of months. Last week I finally received my denial letter from Medicaid. Now, I can appeal it and try to get my shunt. The doctors are still scratching their heads when it comes to the reason I have developed Hydro. To spite the lack of answers I have finally come to terms with the fact that Hydrocephalus is a card I have been dealt. I am nervous that by saying that I am going to be bombarded by people saying I am wrong for accepting it, that I need to fight against it, and so on. The truth is that God wants me to accept that this is a road I have to travel and trust Him. Sometimes accepting things is what brings emotional or physical healing. Maybe God has a plan. He has always had my back, why would He stop now? He has healed me from things in the past that have left doctors baffled. He has walked with me through my darkest days and loved me all the way through. To be honest I think this will be something I spend the rest of my life with. I do not feel that He is going to miraculously take it away although I know He could. I know the day that I meet Him face to face is the day I will be healed and I am okay with that.

Maybe it is part of the process of acceptance but I feel like an outcast, like I do not fit in anywhere, like no one will ever accept me now. Although I have no control over this situation, I cannot help but constantly feel like this is yet another failure on my part. The more medical questions that are answered the more I realize this is a huge thing. The last week I have found myself crying about things out of nowhere. I cry when I am happy, I cry when I am sad, well sometimes I cry for no reason at all. My mom assures me that it is okay for me to cry, be scared, nervous, upset, and so much more.

So many thoughts are constantly rolling through my head. How am I going to live my life with the constant shunt malfunctions and brain surgeries? I cannot be reliable anymore because I have no idea when I will get the call that I can go get my shunt or when it will break and I have to go get it fixed. Are people going to understand that my inability to be reliable is not caused by me being lazy? Will I meet a man who does not mind that his wife is already falling apart? How am I going to be a good mom if I have to leave my kids to have surgery all the time? Yet, people live with Hydro, shunts, and shunt malfunctions everyday and manage to live their lives and live them well, so will I be able to do the same? Maybe these thoughts are my own insecurities popping up to smack me in the face while I am down, we all know that insecurities are great at beating the tar out of you. I have to find my place in everything again. I had just started taking classes, making friends, and absolutely loving life. Now, I feel like all that is gone. Maybe it was all amazing for a season so that I could want to live and have hope through this change. Maybe I will get some of those things back. Maybe life will be even better than before. It is hard to tell what my future holds.

There are a few things that downright suck when it comes to having issues with your brain. One is that no one can see the brain so it is extra hard for people to remember something is wrong with it. Just looking at me a person has no idea something is terribly wrong. After all, I smile and laugh and look fine on the outside. Another craptacular thing is that the brain controls everything throughout the body so just because my issue is with my brain does not mean it is limited to my brain. One of my mom’s first questions to the neurosurgeon was something along the lines of, “her give a darn meter seems to be missing, could that be related to the pressure on the brain?”. His response was, “absolutely, almost anything can happen with the extra pressure”. So, my brain being squished causes more than just the massively horrible headache. Which by the way calling it a “headache” is like calling a skittle a fruit, just because it tastes like strawberry does not make it a strawberry, so just because the pain is in the head does not make it a headache. To spite my advise that is what the medical community calls it. Anyways, back to my brain issues. In the beginning, my hands and lower half of my body would start tingling/burning out of nowhere and last for days. I think the most heart breaking thing for me was when I had forgotten that there is white meat and dark meat on a chicken. Yes, I cry over that one. After my first spinal tap fiasco I cannot stand for more than a few minutes without a nice pinching in my lower back. I never know what is going to malfunction next but I have learned to try and laugh it off. My family’s motto is “If you don’t laugh you’ll cry”. So, today I am going to try to laugh a little more and cry a little less.

So, what exactly is Hydroce… well whatever it is you have?

So, what exactly is Hydroce… well whatever it is you have?

I hear this question out of people all the time. Of course they are a bit reluctant to ask because of the fear of upsetting me or sounding like a jerk. I am here to say that it does not upset me a bit to explain what is going on. Please, ask any questions that come to mind. I am more than willing to answer them. Just a warning though, I have a hard time sugar coating the answers. I have always figured if someone wanted to know more about what is going on than they would just ask me or Google it. I have now realized that people are nervous to ask and Google does not always lead to a reliable source of information. So, I will do my best to explain what exactly is going on with my brain in a way that everyone can understand with limited medical lingo. Here are my descriptions of what Hydrocephalus and Papilledema are in my case.

Hydrocephalus–

You may have heard of babies having water on the brain. That is Hydrocephalus which I will refer to as Hydro. A normal brain has fluid surrounding it. This fluid is known as cerebral spinal flood or CSF. The CSF is important for many reasons. One reason is that it protects the brain when the head is jolted, reducing the chances of TBI’s or death. Another reason is that it controls the pressure in the skull and brain area a.k.a. intracranial pressure. Normally the brain produces and disposes of the proper amount of fluid. However, sometimes the fluid production and disposal process gets interrupted. There are many causes for this and I have been told that in some cases they never find the cause. When an infant has Hydro there skull will grow larger from the extra pressure where as adults skulls will not grow larger. This is due to the skull not being completely formed together until a child is a bit older. So, if my skull bones were not fused right now the top of my head would be swelling up like a balloon. Instead, the pressure that would push the skull out is pushing on my brain. Basically my brain is being squished. From what I know the longer the pressure is high and goes without treatment the higher the chance of brain damage, seizures, etc. There is no cure for Hydro. There are treatments. I am waiting to have brain surgery where a device that will help drain the proper amount of excess fluid from my brain will be placed a.k.a a shunt. This will not cure my Hydro but will give me some relief. Every person’s response to shunting is different so it is hard to tell the outcome.

Papilledema–

Along with my Hydrocephalus has come Papilledema. The high pressure that is inside my skull is putting a dangerous amount of pressure on my eyes. The excess pressure is causing my optical nerve (the nerve that tells the brain what is being seen) to become swollen as well there is hemorrhaging inside my eyes. That means the pressure from the Hydro is so high that some of my blood vessels have burst inside my eyes. Parts of my peripheral vision have blind spots, I see rainbows of beautiful colors overcome my vision field if I stand too long or excerpt myself or sometimes no reason, and during the day I have a little flicker in my left eye that seems as if I have a lightning bug stuck in my vision field. If the papilledema is left untreated there can be permanent damage and vision loss.

What is this TRUST people speak of?

What is this trust people speak of?

Today I had the opportunity to sit down and speak with my neurologist about “the plan”. Finally, some answers. It seems like no one has answers and doctors tend to beat around the bush instead of saying they just don’t know. Honestly, I want to know what I am up against. Things go a lot smoother for me when I know what I am up against.

The doctor was about to do a lumbar puncture to determine how much pressure I have in my spine. He explained that multiple doctors from multiple locations have looked at my scans and all agree I will need to have a shunt. OK, good to know we are all on the same page, right? Then he goes on to explain the lumbar puncture that is not typically a dangerous procedure is very dangerous for me because of my situation. As I sat there listening to him, I realized I had no choice in the matter. The puncture is just a stepping stone to be able to get my shunt and hopefully have some relief and get back to living my life, a life that I love and cannot wait to get back to. As I realized I had to sign this paper that will allow them to do this procedure that could very well kill me, I did my best to trust the doctor and his nurse. Jokingly I said, “So, basically I’m signing this paper saying that if you kill me I won’t come back and haunt you”? You have to get a laugh in from time to time.

Because the procedure is invasive I was not allowed to have anyone in the room with me. Of course I cried when she told me that but the nurse began to reassure me that she would be there with me and help me through. I was in shock that this woman who did not know me was showing me compassion, respect, and worth. How often does that happen in life? I began to climb up on the table half naked and scared. I realized that I was trusting these two with my life. I even told them how crazy that was because I am not a very trusting person. I have built trust in these two people over the last few months but this kind of trust is foreign to me.

She let me hold her hand as the doctor began the injections to numb the area. She and the doctor both talked me through every step that they were doing. She held me as I cried and assured me it was all going to be ok. She even encouraged me to just let out the screams and swear words, after all they have heard them all before. I did not scream, but I sure cried. I began to shake and have droplets of sweat fall off my face all as I suddenly felt nauseated. I could tell I was about to faint and they could too. My body freaked out on me. Mentally I could handle it, but my body said absolutely not. So after needles, numbing meds, and more needles it was called off.

It turned out that my mild scoliosis ruined my chances of getting the puncture done safely and with minimal pain in the office so I get to go back next week to try it all over. Next time they will have me in the OR with an X-Ray machine that will help guide him in the right directions. No, that does not mean more pain meds (already asked about that). Why can’t this one thing be easy? No, it seems everything has to be a battle.

After a nice break down tonight I feel like I can do the puncture again. I am scared, I am hurting, and I have no choice in the matter. I hope and pray that my body will allow this to happen.  As well, that the pain is minimal. This is a road I do not want to be on. One that I never thought I would be on. But I have no choice. God is going to have to get me through because I cannot do it on my own. And I am going to have to learn to trust people in a whole new way.