A letter from 'Your Recovering Brain'

Hello,

  I'm glad to see that you are awake! This is your brain talking. I had to find some way to communicate with you. I feel like I barely survived WWIII and am still not quite all in one piece. That's why I need you. I need you to take care of me.

  As time passes and you and I feel better and better, people, even doctors, will tell you that we are fine, "it's time to get on with life." That sounds good to me and probably even better to you. But before you go rushing back out into that big wide world, I need you to listen to me, really listen. Don't shut me out. Don't tune me out. When I'm getting into trouble I'll need your help more than I ever have before.

  I know that you want to believe that we are going to be the same. I'll do my best to make that happen. The problem is that too many people in our situation get impatient and try to rush the healing process; or when their brains can't fully recover they deny it and, instead of adapting, they force their brains to function in ways they are no longer able too. Some people even push their brains until they seize, and worse... I'm scared. I'm afraid that you will do that to me. If you don't accept me I am lost. We both will be lost.

  

  How can I tell you how much I need you now? I need you to accept me as I am today... not for what I used to be, or what I might be in the future. So many people are so busy looking at what their brains used to do, as if past accomplishments were a magical yardstick to measure present success or failures, that they fail to see how far their brains have come. It's as if here is shame, or guilt, in being injured. Silly, huh?

  

  Please don't be embarrassed or feel guilt, or shame, because of me. We are okay. We have made it this far. If you work with me we can make it even further. I can't say how far. I won't make any false promises. I can only promise you this, that I will do my best.

  

  What I need you to do is this: because neither of us knows how badly I've been hurt (things are still a little foggy for me), or how much I will recover, or how quickly, please go s-l-o-w-l-y when you start back trying to resume your life If I give you a headache, or make you sick to your stomach, or make you unusually irritable, or confused, or disoriented, or afraid, or make you feel that you are overdoing it, I'm trying to get your attention in the only way I can. Stop and listen to me.

  I get exhausted easily since being hurt, and cannot succeed when overworked. I want to succeed as much as you do. I want to be as well as I can be, but I need to do it at a different pace than I could before I got hurt. Help me to help us by paying attention and heeding the messages I send to you.

  I will do my part to do my very best to get us back on our feet. I am a little worried though that if I am not exactly the same... you will reject me and may even want to kill us. Other people have wanted to kill their brains, and some people have succeeded. I don't want to die, and I don't want you to die.

  I want us to live, and breath and be, even if being is not the same as it was. Different may be better. It may be harder too, but I don't want you to give up. Don't give up on me. Don't give up on yourself. Our time here isn't through yet. There are things that I want to do and I want to try, even if trying has to be done in a different way. It isn't easy. I have to work very hard, much harder, and I know that you do too. I see people scoff, and misunderstand. I don't care. What I do care about is that you understand how hard I am working and how much I want to be as good as I can be, but I need you to take good care of us, as well as you can do that.

  Don't be ashamed of me. We are alive. We are still here. I want the chance to try to show you what we are made of. I want to show you the things that are really important in life. We have been given another chance to be better, to learn what is really important. When it is finally time for our final exit I would like to look back and feel good about what we made of us and out of everything that made up our life, including this injury. I cannot do it without you. I cannot do it if you hate me for the way being injured has affected me and our life together. Please try not to be bitter in grief. That would crush me.

  Please don't reject me. There is little I can do without you, without your determination to not give up. Take good care of us and of yourself. I need you very much, especially now.

  Love,

  Your Recovering Brain

10 Steps to Conquering Chiari

Right after I was diagnosed, and before my decompression surgery, I was told about a book that could be very helpful. I bought the book and it had so much wonderful information in it. It really was helpful for me. The book is called Conquer Chiari. A Patient's Guide to the Chiari Malformation. It is by Rick Labuda. If you have Chiari, or know someone who does, I strongly recommend you get this book. There is even parts in there for the care givers who have to help and deal with those of us with Chiari. It is broke down to where if you do not have much time, you can read just one chapter. If you have more time, other chapters go into much more detail. The last chapter, Chapter 9, is called Conquering Chiari and it is where I am getting the 10 Steps to Conquering Chiari. The book goes into detail and explains each of the steps in more detail than I will do here. But, it is something that I am trying to do and remember every day. I do have Chiari. I am a Chiari Warrior. But, I do not want this disease to destroy my life. It is definitely a life changer, but I will win the fight. I know Chiari will eventually win the war, but I will fight it and win every battle along the way.

10 Steps to Conquering Chiari, as printed in Conquer Chiari: A Patient's Guide by Rick Labuda:
1. Move past the anger to acceptance
2. Prioritize & Focus
3. Be smart & creative
4. Live a healthy lifestyle
5. Stay active (don't give into fear)
6. Know when to push & when to ask for help
7. Pursue your dreams
8. Have faith, stay positive & find laughter where you can
9. Look to yourself, not others
10. Never give up, never give in


Some of these things are easier for me than others. Although I am still not allowed to do much, I am having a very hard time with #6. I don't ask for help very well and this has been the most difficult thing for me. I am going to also have problems with #2. I have always done a lot of things all at the same time. This will not work any longer. If I do too much, I can definitely feel it. Of course, this also falls over into #7 because it is going to be so much more difficult to finish my doctorate now. I will do it, I'm just not sure how long it will take.

This is an ongoing process. Some days I will be better than others. But, these are things I can strive for.

Chiari Awareness Month

September is Chiari Awareness month. What is sad, to me anyway, is that it is not recognized in all 50 states. Governor Perry signed a resolution declaring September 2014 an official Chiari Awareness month. There are several people working on trying to get a permanent resolution so every year September will be Chiari Awareness month. I understand that September is also Childhood Cancer Awareness, Prostate Cancer Awareness, Leukemia/Lymphoma Awareness and so many other things that need awareness as well. There is a part of me that feels somewhat guilty and then I remember that there is no reason to feel guilty. Chiari Malformation is just as important as the others. More people in the US are affected with Chiari than ALS and Huntington's combined. The number of people affected with Chiari is on level with those affected with MS. About 1 in 1,000 people have Chiari.

I have often wondered, since being diagnosed, why is it that no one has ever heard of Chiari unless they are affected. I've decided because no one "important" enough will talk about it. It isn't that someone that is high profile hasn't been diagnosed, they have, it is just they don't talk about it. Those of us with Chiari need someone that is high profile to talk about it. Roseanne Cash has it, but doesn't talk about it, George Clooney has it but doesn't talk about it (he just says his brain is falling down), Chris Dugan former NFL Player has it, but isn't vocal about it although he did give a wonderful motivational speech about having it about 6 years ago.. We need someone that is vocal about it more often. Without people being vocal, we will never have a cure. We will never have anything more than brain surgery. We will continue to have doctors accuse us of being drug pushers of being a hypochondriac and sometimes have complete strangers accuse you of having Munchausen Syndrome because you talk about Chiari.

It is definitely an uphill battle. One that one day I hope we will win. Unfortunately, right now, the future does not seem so bright.

In closing, here is the link for Chris Dugan's speech. It is about ten minutes long, but it is absolutely amazing. Chris Dugan Video

How to Talk to and Treat Someone With Chiari

I have a couple of support group sites that I found and now frequent for Chiarians. This was posted on one of those sites one day. I did ask if I was able to use it and was told yes, it was something they had found on the net somewhere as well. This makes a lot of sense from my point of view.

I don’t look ill…although I might have a pained expression in my face, which may appear to be outwardly grumpy. Take it that I am in pain and I am trying to hide it from you the best I can.

If I am quiet or in a non-talkative mood, don’t assume that I am in a bad mood. I am merely trying to come to terms with what I can no longer achieve, or can no longer do all that I want to do, and that it is very frustrating.

On the other hand, I might be exhausted from dealing with the pain and discomfort, or trying my hardest not to fall over with the balance issues that I have. Don’t try no to pity me, I can do that very well for myself at times and I do try my hardest not to sink deeper into it.

Don’t compare me to other people with similar pain issues; everyone has their own problems, some worse than mine, some not so. Some people have managed to come to terms with it, I might not have yet. Pain is different in all people. Not even two Chiarians have the same symptoms, although we do share a common bond.

I know it could be a lot worse, and I am grateful that it isn’t, I really am, but it doesn’t make me feel less pain or feel better. In fact sometimes it makes me feel down and there are people that are worse off than me.

Just because I am in pain, doesn’t mean that I can do much about it. Pain Meds is not a cure all. Some medications don’t work; some have horrible side effects and give me other problems that add to the stress and feeling of unwell.

Don’t tell me what I can and cannot do, don’t label me as disabled. I want to try and do the things that I used to so, if I can’t, then at least I have tried and have ticked off another box. Don’t blame me for trying again and again…I will get the message eventually.

Don’t assume that I am angry or upset with you…sometimes we make mistakes and lash out at others. It is merely frustration with myself. I don’t mean it; I might have missed the fact that I have upset you. Don’t ignore it, tell me so…but do it nicely please, let’s not start an argument.

Don’t think that just because I can do something today, that I can do it again straight away, or can do it tomorrow or the day after. My symptoms can change daily. My energy levels and patience can be sapped by the simplest of tasks one day and appear to be easy to do the next.

Try and treat me as a normal human being, I will respect that and will be very grateful. Try and encourage me to do normal as much as possible.

Don’t make exceptions for me; I can do that for myself.

Don’t be upset if I cancel long-standing plans at the last minute. I want to be there, and I am trying to be there, but sometimes I can’t and don’t have the energy or capability on that day. I cannot plan ahead with certainty but I will still plan.

Learn about my condition and you will be better armed to either help me when you can, or be aware that sometimes I do not need help and haven’t asked for it, or that I really don’t mean to be rude or ungrateful, I am very grateful, I need friends now more than ever. You will know why I react in the seemingly wrong way sometimes…it will help you stop feeling like you have upset me, when you really haven’t.

Help me to see my behavior through your eyes – but take a step back first and try to see it through my eyes.

Don’t think that I am just in pain and that’s the end of it, there’s a reason that the pain is there – it’s my bodies way of telling me there’s a issue somewhere. The pain leads to other symptoms, and the cause of the pain can also cause other symptoms. Most of which I have no control over.

Don’t be afraid of offering me a hug or giving me a little encouragement – we all need that sometimes. If I reciprocate or give you a smile back it means that I appreciate it very much, but know there’s something else going on inside my head.

Don’t be sad that you cannot take away my pain, don’t feel helpless because you cannot help me. What’s the point in both of us feeling frustrated and useless? Most of the time I cannot do anything about the pain.

If I tell you I can’t do something – I really mean it. If I tell you that I’m in pain, don’t ask me to empty the dishwasher half an hour later and get upset if I can’t. I will try my best you know.

If you ask me to do something in the morning and it is not done by the time you get home, it isn’t because I forgot (well sometimes) nor is it because I am lazy, it is because I used up all my energy doing other things. Sometimes all I can manage to do is to sit down and sleep. It does not mean that I expect you to do everything for me; it just means that I cannot do as much as I used to be able to do. I will get around to it – tomorrow I might feel better.

My timetable will not always match yours. I cannot help it. That is just the way it is.

My life has changed drastically and not for the better. Please don’t except yours not to change if you’re involved with mine.

Know I still love you, I might shout, I might grumble, I might complain and I might get easy frustrated, I am very grateful of the help and support. Just don’t make me beg for it.

I have a lot to come to terms with and I have a lot to face up to. It takes times to do so and even longer to accept.

Frustration can bring out the worse in all of us. There are two sides to every coin.

If you’re behind me in a checkout, church pew, or line, don’t talk amongst yourselves about the scar down my head and neck and take guesses as to how it might have happened. My ears work perfectly well, and I can still hear you. If you’re concerned then ask me. I’m fine with it – can’t hide it, nor would I want to.

I am not always miserable – but by giving me something else to grizzle about isn’t necessarily good thing either. I have enough to deal with as it is.

I am still the same person and have the same heart and feelings. I am still an intelligent contributing Member of Society. Do not discount my intelligence or drive to succeed for others that cannot. I fight daily for others with Chiari Malformations and other Rare Disorders.

What have you done for Humanity Today…Yesterday, Last week a Month or Year ago?

In the end that is all that matters.

My Story

I have Chiari Malformation. Chiari Malformation is a neurological disorder where the cerebellum extends into, and beyond, the hole at the bottom of the skull where the brain stem and spinal chord meet. This causes the spinal fluid from being able to flow correctly causing all kinds of symptoms. I was most likely born with it. It just was not diagnosed until I was 38 years old. After the diagnosis, everything made sense.

To tell my story, I can’t just start at the diagnosis and what happened from there, I need to start at the beginning…when the first symptom occurred but no one knew what it was.

When I was 4 or 5 years old, I complained to my mom that it hurt “right here”, pointing at my heart. At that point, my heart was beating so fast and so hard, my mother could hear it clearly from several feet away. I don’t remember this; I’ve just been told it so many times I fell as if I should know it. This started the attempt to figure out what was wrong. I went to so many specialists, had so many EKGs that by the time I was 9-years old, I could probably do the EKG myself. I knew where all the stickers went, I knew how to hook it up, I knew how to start the machine, I knew it all. Unfortunately, that’s all that was known. My heart would just randomly decide to speed up. The doctors couldn’t figure out why, they just knew it did. The highest it ever got was up to about 220 beats per minute. But typically when it sped up, it was to about 130 beats per minute. The doctors tried everything to figure out the cause, but never did. Then they decided I would probably outgrow it, I never did.

When I was 7/8 I lost all feeling in my left hand. It was random…one day it was there, the next not. I could sometimes feel cold, but not often. When I was 31, I got the feeling back slowly. It started with feeling heat and cold. Then the hand started tingling/pins & needles. Then I just randomly have pins/needles in both my hands and feet for the last 4 or so years.

When I was 18 I was diagnosed with migraines. Nothing seemed to help keep them away or stop them once they started. Sleeping in a cold dark room was about the only thing that made them go away.

Around 25, is when I became aware how much bright lights bothered me. I could not be outside without dark sunglasses. Typically while inside I could not stand the lights on if there was sunlight coming in. This just has gotten worse.

At 33, I was diagnosed with spatial (or focal) seizures that were brought on/caused by my migraines. Multiple medications were used to try and alleviate these. Nothing really helped.

By this point, I always had a headache. By always, I mean 24/7.  Right at the base of my neck/skull I constantly hurt. It was one of those things that I finally decided was something I was going to have to live with and although it was a headache, it was a minor one and I didn’t want to have to take medications every day, so I just ignored them. Sometimes the headaches would get bad, I assumed these were just the migraines I was diagnosed with when I was a freshman in college.

Then the beginning of February 2014, we had ice on our patio and I fell and hit my head. This made my constant annoying headache turn into a constant horrible headache. I was taking something for my headache every time I was able. It helped, but didn’t make it go away. So, the beginning of March, about a month later, I made an appointment to go see a doctor. I explained to her about my constant headache and how since I hit my head, it was a constant really bad headache and that even with a concussion, I shouldn’t feel that way. While there, I told her I was also having random lightheaded feelings. It was one of those things where I would just randomly get a head-rush. It would last about 10 seconds or so and then be gone. Because of all these symptoms, the doctor did a huge battery of tests…blood tests, x-rays and a CT-Scan. Less than a week later I received a phone call from my doctor’s office saying they were referring me to a neurologist because of the results of my CT-Scan. The findings of my CT-Scan were “Low-lying cerebellar tonsils are present.” Those six words would turn my life upside down.

On March 13, 2014 I went to the neurologist I was referred to. The neurologist told me that the low-lying tonsils meant I had something called Arnold-Chiari Malformation, or just Chiari Malformation. I asked what that was and he said that cerebellum part of my brain was lower than it should be. I asked what that meant, how it happened, what would happen, and anything else I could think of. He told me it wasn’t a big deal that the only way to fix it was through surgery but that would be way down the line because no one really wants brain surgery. Then he said ‘let’s figure out the pain you are having’. He decided that basically I had whiplash. He gave me exercises to do, told me to take ibprophen and if it wasn’t better in a month to come back and see him and he’d do an MRI and we’d go from there.

So I left, and I did what any person would do…I googled Chiari Malformation. What I found would change my life.

When I started researching, I saw many of the things I had no questions for since I was young, were actually symptoms of Chiari. I also read that one symptom was hearing issues. But I didn’t think I had a hearing issue…I mean, the stuff my ears did, everyone’s did, right? So I called mom and asked her two questions. I asked “do you get to where sometimes your ears sound muffled like there were cups over it or something?” Her answer, “ummm, no.” Hmmm. My next question, “Well, what about a random high pitched squeal that lasts about 30-seconds or so, sometimes.” Her answer, “No. Why, do you have these?” I told her yes and she asked how long I had those, I said my whole life, I could not remember not ever having that. I also discovered there was no cure, it could be a lot worse, and the only way to truly diagnose it was through an MRI.

I went back to the neurologist on April 15 still in pain and with lots of questions. The doctor said he was going to send me to a pain specialist since I was still in pain. I asked about the MRI and he said he didn’t think it was necessary at that point. I asked if all my symptoms could be related to the Chiari since the research I had done showed those were all symptoms. He told me no, that he did not think the Chiari was an issue at all. He said he’d refer me to a pain specialist and if I was still in pain in a month, to come back and see him.

I left there and I again researched. This time I was researching a doctor that might know something about Chiari. I found two doctors in the area that knew something; one was a pediatric doctor, the other was not. So I took a chance and made an appointment with the neurosurgeon.

On April 29, I went to visit the neurosurgeon. He had all my test results and then he sat down and talked with me. He said yes, it sounded like I had Chiari Malformation but he needed to do an MRI to confirm it. He answered all of my questions, he gave me more information that I had found in my research, and he was very patient. He scheduled the MRI for as soon as he was able and then had me back in his office within three days of the MRI. On May 16, I again met with Dr. Glenn Harper and he said I for sure had Chiari Malformation. He explained again there was no cure. He said he did believe I was a good candidate for decompression surgery and that he believed the surgery would be a life-changing event. He was right in so many ways. When I scheduled my surgery, my only stipulation was that it could not happen until after June 16. His office was surprised and asked why then. I said I was a teacher and we did not finish until June 6 and then I had a trip planned and we were taking 16 students and parents to a workshop at Disney World and I would not be back until the 12^th. I said as important as this may be, I’ve lived with it for almost 39 years, I can go see Mickey Mouse first. And so, my surgery was scheduled for June 19, 2014.