tag:blogger.com,1999:blog-41170229349080815122024-03-08T14:15:11.943-08:00Zipperheads for ChiariWe want to support Chiarians, family and friends. We are here to help all of you with education, love, support, understanding and lead you to the road of a positive life and LOVE, LOVE all of you.Heatherhttp://www.blogger.com/profile/06322896827980743141noreply@blogger.comBlogger45125tag:blogger.com,1999:blog-4117022934908081512.post-21143059422427364772013-05-18T00:20:00.002-07:002013-05-18T00:20:16.023-07:00Live with Chiari from a husbands view<div class="_1x1">
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<span class="userContent" data-ft="{"tn":"K"}">This was sent to me by my husband for all of you I am amazed that he did this. My husband Cj sharing to the world. With love I love you Cj, <i class="_4-k1 img sp_6h2d3l sx_848a3e"></i> Heather<br /><br /> I may be one of the people who you never hear from. I’m the one who gets to stand by and watch my whole family get sick, one by one. I sat and watched my wife have issues for years. We went from Doctor to Doctor trying find out why she was having <span class="text_exposed_hide">...</span><span class="text_exposed_show">all of these problems. None of them were able to tell her why she was sick. Each one wanted to help, but this disease is not an everyday issue like cancer. We got lucky enough to have a Physicians’ Assistant notice that Heather had an abnormality in her Cerebellum. This was the first time we heard of Arnold Chiari Malformation. My wife found this out while I was out of town moving my mother up and into our home. I was 5 hours from home and unable to be with her. I received a phone call from my wife who was scared and trying to understand what this was and why she had it. We started down the road that put my wife into surgery, a scary surgery that Chiarians all know too well; decompression, removal of the tonsils, Dura patch and shaving down the C1 (Lamanectomy?). We had traveled to Las Vegas to a Doctor that we believe is good at what he does, not how he approached the patient. Her Surgery was done right. Her head healed after a couple of scary weeks and a return trip to Vegas. We were optimistic about the surgery if it would really help her out, but now we understand that she has been impacted for so long that the damage was done. Maybe if it was found years earlier she would be better off. We have a great group of Doctors who really do care and are trying to make her as comfortable as possible, but I feel that down inside, that’s all they can do. But they are trying and they seem to have compassion. This was in 2009.</span></span></div>
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<span class="userContent" data-ft="{"tn":"K"}"><span class="text_exposed_show"><br /> This would be enough for most, but then we started noticing problems that our children were having. Heather started asking the questions that I did not want to hear. Do our kids have Chiari? I am still to this day watching what this disease has done to Heather. Our children do not need this. I feel that I am still in denial. My daughter was diagnosed in 2010-2011. She started having seizures and odd pains. She had been diagnosed with a bipolar-rage disorder when she was 7 and we had been fighting that for years. We were always scared of what puberty was going to unleash on us. We had been warned that this was when her disorder would come to a head. Then a funny thing happened, she hit puberty and became this mellow, goofy child. We found out first hand that Chiari causes many “side effects” hers was this mood disorder, like her mother. Heather was never diagnosed that early, but she was in her 20’s. When she started going downhill the neurosurgeon that we found preceded with the decompression surgery, the one her mom had. She had the surgery in January 2012, she was 15 years old going through this. She still has seizures and one of her “add-on” disease is EDS which basically is super elastic tendons and ligaments. She sprains her ankles and her knee cap pops out often. She also has internal problems that we are working through, once again very much like her mom, but she has a better chance of overcoming this because we were able to act early. She gets tired and cannot get through a whole day of school, going shopping or going out with the one person that stayed by her side. She has high expectations for herself and has almost a 4.0 GPA after brain surgery. She struggles to have a regular teenage life, but she doesn’t get to. She is pretty incredible, really one of the strongest kids I have ever met. This is still a lot more than most can deal with.</span></span></div>
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<span class="userContent" data-ft="{"tn":"K"}"><span class="text_exposed_show"><br /> Now after hearing about that, it’s hard to say that our son was also diagnosed with chiari and his herniation , I believe is larger than either my wife or daughters. He is 10 years old and the sweetest kid. He really cares about everyone around him. We were told once that he did not take a sandwich to school and we should check his lunch before he leaves to school. We thought about it and knew that he made a PB&J sandwich. He threw it away so he could eat lunch with his friend who has a peanut allergy. What 10 year old does that? We noticed that he was tuning out for a couple of seconds at a time and these episodes increased. A number of tests later and he was also diagnosed with JME, which is a form of epilepsy and his tuning out were seizures. He was put on a heavy dose of meds to control this, but they did not completely take them away. He was falling behind in school because he does not retain the amount of work that is given. Like his sister, we put him on home and hospital. He is doing a little better, but our loving active child is more lethargic and tired. It is hard for him to do most things. He is going to be scheduled for surgery soon. This is the hardest thing to wait for. It’s not easy to watch first your wife and then daughter go through this. Now our son gets to have his life really turned upside down as he goes into surgery, and then starts the long road to recover. My Wife is strong. My Daughter is Strong. They have to be, they are living with this disease. I know that they will guide Jax through this with their first hand knowledge.</span></span></div>
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<span class="userContent" data-ft="{"tn":"K"}"><span class="text_exposed_show"><br /> I get to watch again as another member of MY family goes through this. I work and provide. I’ve had a second job. I make sure that we have great medical, because if I did not, we would truly be screwed. I commute 1 hour each way to provide for my family. We are moving into the mountains so my family has a place that they can relax. Jax and Em will be able to go outside and I don’t have to worry about traffic. I put my head down and move forward. I do not ever wish for something else, because this is MY family and we will get through anything. It is hard, and I don’t think that the husbands, wives and family really know how to handle this, but we do for our loved ones. There are going to be people who move on and leave your life because they cannot handle the illness. We have seen our fair share of that. You keep the ones that stay and let the others go. In the end, we choose our family and friends. We are always there, we will always be there and we stay strong to support and Love our family. I’m not as well versed as my Wife, she really has gift for what she gives to Zipperheads. I thought that for Her, I would try to give you all my side as a Father and Husband who has to watch his family go down this road.<br /><br /> CJ</span></span></div>
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<span class="userContent" data-ft="{"tn":"K"}"><span class="text_exposed_show">Heathers husband founder of Zipperheads for Chiari</span></span></div>
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Heatherhttp://www.blogger.com/profile/06322896827980743141noreply@blogger.com4tag:blogger.com,1999:blog-4117022934908081512.post-59458528707247131672013-05-18T00:16:00.001-07:002013-05-18T00:16:19.704-07:00When Chiari Keeps a Comin<br />I was diagnosed 5 years ago, we thought I had a brain tumor and I kept most of my issues to my self but it's hard to do that when your sleeping on the couch, in pain 24/7 and you start to have symptoms that your family notices. I was sent to a MRI ASAP finally after so many people, family and doctors saying there was nothing wrong and I was in it for the drama. LOL yep totally want head pain that drops me for "drama sake! The night of my MRI I got the results and like almost all Chiari stories they had never heard of it but I was told on a Friday so I had time to get right on the web and scare my self to death. That was in Feb and my surgery was in Aug, of 09. All the NS's agreed I was born with Arnold Chiari Malformation and should of had surgery when I was a child. I went to Las Vegas Dc,M Sieff and he removed my tonsils, and the normal Chiari surgery. My recovery was very hard and still is. Yes I am still recovering, because my brain stem and Vegas Nerve was so damaged it not only effected my them and the signals to my body but other parts of my body. <br />
This is the time I remind all that we are all different and not one Chiari is the same because not one body is the same nor the brain.<br />
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With in 4 months of my surgery I was having A Typical Seizures and although they look like full blown seizures they say they are not Epileptic. I was diagnosed with a Brain aneurism I think 9 months later and with me I get the things they can't help! LOL<br />
<br />When I was told I cry'd then started laughing because in my mind it made since. The question on why I had ACM loomed over me like a storm that would never stop raining and although I know why I was so scared to come out and say it. I many more illness's and I roll with because two years ago as we were thinking our son had Chiari our daughter went down with "all" the symptom's and she went down fast. She Has Chiari 0 and had the same surgery I had but at UCD with Dc, R Schrott. As she was healing and having seizures the same as me our son stared to go down also, he was diagnosed about 6 moths after our daughters surgery. My daughter and I have A Typical seizures and EDS along with other illness, my son has Chiari 1 with Epilepsy called JME. As we await his surgery it keeps being pushed off because now his blood is not clotting. Our daughter is almost 17 yrs old and our son is 10 yrs olds.<br />
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With all this going on and much more we wanted a new start so we moved to the mountains in a great small community where we are not the family that got sick, we are just us. We are less stressed and now see how close we are to each other and how we need to be. My family has Chiari because my father was in Vietnam and was exposed to Agent Orange. We are doing DNA testing but our doctors believe this also and my bio-father is suffering from nerve issues. <br />
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I got the Why we have it and it does not help, the only thing that helps us is to be strong, take one day at a time and enjoy the days we feel good. There is a misunderstanding that when we get the surgery we are fine. I hope to God you all are but in our case and others we are not. We are still fighting with other illness related to ACM, it may be a brain disease but it effects out nerves. And even more important Brain surgery is a trauma to the brain and it takes time not only for your brain but your body and your sprit, soul and self to find the person that has been stuffed inside for years not able to come out because of the blockage. <br />
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I'm not a doctor I'm a Zipperhead a Chiarian a mother to two children with Chiari and we live eat and breath Chiari. Some of this may apply to your self or loved one and some of it may not but in my life it's what we live. Chiari can keep comin and you don't know when it will stop so enjoy each moment of love, happiness, laughter, smile, kiss, hug or what ever worms your heart because that is what keeps us all fighting is love.<br />
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I send all my love and support to you all<br />Heather Founder of Zipperheads for Chiari<br />
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<em>Note: Anything that is posted is from my own person life and there is no medical staff on this site, we are a support group that wants to send love and support to all that is ill and let you all know your never alone.</em> Heatherhttp://www.blogger.com/profile/06322896827980743141noreply@blogger.com0tag:blogger.com,1999:blog-4117022934908081512.post-52026281280601716662013-03-03T15:28:00.005-08:002013-03-03T15:28:58.934-08:00How I live with Chiari day to dayI'd like to wright today about what's it's like to live with Chiari for me. We have had many questions about this and many concerns and although we are all different it has weighed heavy on my heart.<br />
Before I was diagnosed I had no idea that not being able to filter the noise around you was not normal, I thought the ringingin my ears everyone had and of course the head pain that shoots up the back of my head so fast that by the time my mind could rap around what was going on it was gone was normal. As I got older it got worse along with my memory, days or weeks seemed like months or years to me, I had spots that in my past I have no memory of at all. The weird feelings of one foot being asleep and a shooting pain in an arm did not make since. As I got older it got worse, I knew there was always something wrong with me, I did not fit, I had friends but they were the type of people that loved you and just went with me on who I was.<br />
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When stress came knocking on my door I could not and still can not handle it. Many times before and now there is a place that I go and I have issues with understanding what is going on. I need, I have to talk things out, I can not go on a what if, and I have to be around safe people or my body can not handle the emotional and physical trauma.<br />
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Some of you have had the surgery and have become to heal and found a great deal of comfort in it, I knew when I went in for surgery from my NS that the damage from my brain stem and vegas nerve was already done and it was to help me from not getting worse faster then needed. We are all different and some have other issues I do not some have similar. I would never change my past with my surgery, My NS did his best and I am in good health care. But I am ill like most of us or all of us in one way or another.<br />
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I was always an out going person had many friends and loved to work and loved to play, after surgery that changed. I have very few friends that are here for me. I have seizures that are getting worse along with many other health issues. I am blessed to have a husband that stands by me a mother-in-law that lives with us but our children are very ill as well. Both have Chiari, both have seizure's and our son has JME, all three of us are very sick but we have a happy home but the hard part is when others do not understand. How can they? We are trying to figure it out ourselves. The Doctors don't even know all that ACM effects, we are moving into a world were people are just learning about it. So what and how do we handle these rollercoasters of emotions and people that hurt us?<br />
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I had a very close and loving family member say to "what is wrong with you, your not social with people, you disappear and in my head I was trying so hard to figure out after almost 5 years of my surgery how to explain it's all to much, the noise, the people, my anxiety, the filtering and the proses my mind goes through to decompress everyday every moment, every hour.<br />
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I go away when I can not handle it anymore, when I need the time to think, hold my neck, rest, close my eyes or when my arms or legs start to shake, because even if they all say it's ok, it's not with me. I go to the quite place and I've learned to mediate it's the only thing to clam my mind. To be still.<br />
Stress is the one thing that triggers all my issues and peace is the one thing for me to deal with day to day life. It is very hard to loss control of your body or your life. So I have learned to be still if not I flip, and blank out and I am the one that pays the price, my body does for days and weeks. When that happens who is there for my children? This is something my children battle with to and we are teaching them how to be still and breath.<br />
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So how do I handle all of this? Having Chiari, our children having it, well I breath. In the positive out the negative. I am still, I push what I can not handle and leave it on my shelf, it will be there when I'm ready to open that door or close that chapter. The other thing I do is send love, always no matter who it is no matter what has happened I send all my love. We want our children to be able to have a loving life so we have to give them one.<br />
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I have struggled to explain this to close family and friends that is is my life. That my needs are not me being difficalt or rude but a need that my mind has to have. I struggle with the fear of lossing more people and having no control because I have tryed to be someone I am not and in the end I pay the price. So the life I have is the life I have to build for my family for my self for my health. I have guilt with putting my illness on others and it is my fault that they do not know about my health issues but it what I feel is best because it's to much for me to handle. I'm not telling anyone to do as I do but many have ask. Everyone needs to find the best way to deal with there illness, but pushing the nagitive away and welcoming love and the positive has helped me and my family. I do hope this helps.<br />
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The other thing I do is come on here, because it is always a welcoming support to know you are not alone. We send you all love and support and with sharing this I hope I have helped someone know they are not alone.<br />
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<em>With all my love</em><br />
<em>Heather founder of Zipperheads for Chiari</em><br />
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<strong>PLEASE note: This is my story this is not a medical site if you have a medical problem or question please call 911 or your doctor. We are a support group a community and we are only here to support and love all. </strong>Heatherhttp://www.blogger.com/profile/06322896827980743141noreply@blogger.com0tag:blogger.com,1999:blog-4117022934908081512.post-8589690189385471642013-01-21T23:37:00.002-08:002013-01-21T23:37:57.229-08:00Our swings we go though After my surgery I went to my Neurosurgeon frustrated. I felt as if my body was all over the place. I was up and down, crying, unable to handle the simplest things and I was frustrated. I said to her at the time “it made me worse”. I remember exactly how I felt not just physically but emotionally and I had enough. Looking back it’s kind of silly of me because I was only a few months post opp and I was very progressive prior to the surgery, Oh and I had just had “Brain surgery“. Not just Brain surgery but a rare disease invasive surgery and not only did they perform the regular decompression but also removed/shrunk my cerebellum tonsils. In any case I was upset as we should be after our surgery because even though we know there is no cure in the back of our minds we want it to fix us 100%. Well for most of us it does not and it can be very frustrating. So as I am crying and not understanding why I was not getting better but have been feeling worse, this is what she told me.<br /><br /> Heather look at your brain with Chiari as a grandfather clock and the pendulum is out of control. Some days it swings to fast and some days it swings to slow. This is what our body and brain is doing to find the correct way on how to work. It takes time (I hated time at that point) for the pendulum to find the correct swing. Some it only takes a few weeks and some longer. It all depends on how bad prior to the surgery and how long you need to heal. Once you are healed your pendulum will swing at the same pace. At that point I could picture the clock and my clock was way out of control and I could understand. <br /><br /> Well my Zipperhead family I have not found my swing yet and am patiently waiting (sometimes not so patient) for my swing but the way my mind works I need to see it, feel it, sometimes drawl or write it to understand. I have a very cool silver clock in my house that has a pendulum, now the ironic thing is it does not work. I can not find it in me to get it fixed. Maybe because I’m not at my swing yet!!!!! So I look at it from time to time and wonder if this just another reminder for me to be patient and allow my self the time to be healed. I am the same as all of you I need to understand what in the world is going on with me and all of you. Our minds our like the wonderful machine in the grandfather clock and we need to allow ourselves the time to heal so our pendulum swings the correct way for each one of us.. I think mine might always be a little off and I have come to except that. <br /><br /> I am so thankful for my NS for explaining it to me in a way I can understand it. I take this very serious but sometimes you need to allow your body to swing the way it needs to swing to heal. Please remember that if you push the pendulum to fast it takes it longer to go back to what it was before you pushed it. So take it easy, don’t be so hard on your selves. We had brain surgery not foot surgery. This all takes time. I don’t know about you but I always want to be in control now I have found out something’s you can’t be. You just have to be good to your self and take care of you. Allow your self to heal, the swings are not fun but the more you push the longer it takes to swing the way it’s suppose to. <br /><br /><em><strong>Note:</strong> this is just my opinion on what happens after surgery. If you have questions I recommend you talk to your doctor. I have NO intentions on hurting anyone or telling them to go against there doctors orders. I am just here for love and support</em>. Heatherhttp://www.blogger.com/profile/06322896827980743141noreply@blogger.com1tag:blogger.com,1999:blog-4117022934908081512.post-20672321863124053952013-01-06T23:16:00.000-08:002013-01-06T23:16:31.890-08:00My life battling with bathroom issuesNot all of Chiarians have bathroom issues and some that do, do not have Chiari, I am one of the people that dose and today I want like to share with you my life battling with bathroom issues.<br /><br />So this is my story - As I always say if it's happening to me I can't be alone. <br /><br />My whole life I can not remember not having an issue going to the bathroom, going more then a few weeks with out a BM was not uncommon for me. The thought of going to the bathroom made me cry, the pain that was in-front of my feet as I opened the door was overwhelming. When I was a child it was so hard to go because we did not talk about these things and I took so long that I felt a need to hurry. As a child and through my twenty's I thought it was normal to wait to go or hold it for so long. But the truth was when I went it was not just the issue of being able to go and push it was the pain in the back of my head I would just quit. This was normal for me and it has carried on to today as I cry sitting in the bathroom wondering what is wrong with me. <br /><br />Each GI doctor I went to made me feel more alone as they told me it was the medication I took and did not listen to the fact I have had this my whole life. The only way I knew how to deal with it was to joke about it and make poop jokes to the doctor so I did not fall apart and end up on the floor crying. So I carried on like that for a few years after my surgery. Each test made me feel more alone and a rat lab. The more medication they gave me that failed the more I felt I failed and as all the GI doctors looked at me like they (the doctors) didn't no what to do. A hopeless feeling falling over me as I went into my whole of going on with out talking about it. Even though it controlled my life. <br /><br />As many of you know when you are the parent and have sick children you have to pick and choose what you have to get done. I was down to being so blocked that my kidneys felt like they were being kicked and I stopped eating. It was the end of the rope that we all have that is now so short.<br /><br />We being ill as we are, anything big or small can push us over the edge because our bodies are already to there max and I was there. I was standing on a edge of wondering when I would stop being in a fight with my own body and wishing could do a simple thing like pee or have a normal BM (what ever that is).<br /><br />As I wright this I feel like I have cut myself open wide so all could know my little secret the girl with the bathroom issues. The fear and pain that we go through when your body does not work is so over the top its hard to get up and stay positive. <br /><br />Some how after many GI doctors I found (or maybe he found me) a GI doctor that for two hours listened to me and agreed "yes there is more then your meds and we need to do test that will not hurt your body". I almost cried or hugged him. A doctor is listening to me. He gave me stronger meds but ones that did not have me doubled over and it is working with no headaches. But I am still not normal. It is a daily struggle one that can put me down in bed but I refuse to give up. <br /><br />Doctors and medical professionals can help us if they are willing to listen to us and realize they're not the one sick, Chiari and Chronic illness's are hard to live with and can control our lives. It is up to us to be our own advocate. For us to know our body enough to know when we need another doctor or more help. We can not give up on our self's. It may suck but we are the ones fighting for a pain free day. <br /><br />This is my story of one of my medical issues, it is not to scare anyone but to hope that out there someone will feel they are not alone.<br /><br /><i>I send you all love and support and hope you all know you are never alone. We are always here for you with love and support.<br />Love<br />Heather<br />Founder of Zipperheads for Chiari</i><br /><i><b>Note: We are not a medical site and if you are having a medical issue please call your medical doctor or 911. We are a support group to share our life, be there for you and love, love you all.</b></i><br /><br /><br />Heatherhttp://www.blogger.com/profile/06322896827980743141noreply@blogger.com1tag:blogger.com,1999:blog-4117022934908081512.post-24888792135005274392012-11-28T22:42:00.000-08:002012-11-28T22:42:59.426-08:00The storm of Chiari
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When the storm comes and hits you and
your family the seasons become one, the days become one and so do the
years. We are one out of many family’s that Chiari and
Syringomyelia has come in and affected. With pain, confusion, hurt,
and disappointment. It is hard to see a positive side to all of this
and sometimes there may not be one. Except for how you live your life
and help others. In our home it consist of my husband needing to get
me dressed after a seizure and most of my day not feeling well and
that he has been there for me like that for almost 3 years now but no
one else see's that. For our children they seem well and healthy but
they are not and most days are sick, fighting Chiari as we do or a
seizure one of them have had.</div>
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On the same day I have to try and
answer to my 15 year old on how and why she has to go through this
and not have a normal teen life. With my daughter the surgery was
worth it and she has expected that but other have not. It is never
easy when she just wants the pain to go away. That's one of the hard
parts about being a parent, making those decisions and hope it is the
correct one.</div>
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Our son is 10 years old and will be
having Chiari surgery soon, he has epilepsy and other health issues.
Even though I have has the surgery and so has our daughter it is
never a easy thing. Some days it seems harder and you want to have a
screaming match with the “why's”. </div>
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So where is the positive side that we
always find and flip? Well I think the first thing we need to make
sure people know and understand that this is not a rare disease and
that it is also a serious one. Chiari ans Syringomyelia is mostly
just misdiagnosed. It's time for our loved ones to step up that have
not and be there for all of us. We did not make this choose and our
family's and friends should be there. If they are not there it is not
an excuse, there is no reason it is a choose they make and it is
selfish and mean. I was talking to one of our Chiarians awhile ago
who will had surgery and like me one of her sisters do not support
her. Trying to understand there action or reason with them seems to
only hurt us. I know this may not seem like my normal article but
this is something I hear from every Chiarian I talk too and we go
through this in our life and watch it in my daughters and son. This
is what I say to them “ I love you but I don't respect you. I'm
here and need you and may always need you but I know in my heart I
would never do this to you. So I have to say good bye because it
hurts me more physically and I have to make sure I am not making my
self sicker. I love you .”
</div>
<div style="margin-bottom: 0in;">
The positive side to this is that you
have to put your self first, your children first, loved ones that are
sick and everyday even the bad days should be treated like your
favorite book that has a new chapter you have never read. The
positive is we see the love and in brace it we see the good and hold
onto it. We see the wrong and turn it to the good because we have a
purpose. Once you walk into this storm you treasure ever blessed
moment even if your sitting outside watching the wind blow the trees
or sitting on the coach just watching your loved ones, “or that
good day that you go out and in brace the world that is waiting for
you. You never know who you will met”. My name is Heather I and
both my children have Chiari I am a Zipperhead but please hear me
when I say I'm NOT a number or just another face we hurt, we like to
smile and laugh also just like you. We are humans and we want to be
treated as humans.
</div>
<div style="margin-bottom: 0in;">
<br />
</div>
<div style="margin-bottom: 0in;">
I want to thank every person that holds
our hand or lets us be us, our dear ones that look at us as us and
not a sick person, I want to thank all of you that have stood by our
side and not left, the love you give us makes us give more. We love
you so much Thank you
</div>
<div style="margin-bottom: 0in;">
<br />
</div>
<div style="margin-bottom: 0in;">
<i>I send love and support to all. </i></div>
<div style="margin-bottom: 0in;">
<i>Heather </i></div>
<div style="margin-bottom: 0in;">
<i>Founder of Zipperheads for Chiari.</i></div>
<div style="margin-bottom: 0in;">
<br />
</div>
<div style="margin-bottom: 0in;">
This article is based on how I feel
and what we have go through in our home. If you have medical
questions please all your doctor there is no doctor on this site. We
are here to send love, support all, Chiarian, Zipperhead,
Syringomyelian, Family and loved one and anyone else that is sick.
We are called Zipperheads because of our scare after surgery. We
except all human life with love.</div>
Heatherhttp://www.blogger.com/profile/06322896827980743141noreply@blogger.com0tag:blogger.com,1999:blog-4117022934908081512.post-20147530805804003152012-10-17T23:55:00.001-07:002012-10-17T23:55:20.420-07:00Living with Children with Chiari
<div style="margin-bottom: 0in;">
I sit quite in the dark, it's late and
everyone in the house is asleep. I've tried to sleep but sleep has
not come to my front door for me. As I stand in front of the door jam
as the light hits his face just right I can see he is breathing and
does not seem like he is in pain “that I know of”. This is my
time not to be so strong and hold it in. My time to weep in the halls
before the sun rises. He's just a child a beautiful loving boy that
cry's when I raise my voice or laughs at a knock knock jokes a little
boy that can still touch his dreams and nothing has stopped him. He
can be anything at this moment. As I watch him sleep I know he will
wake up smile, try his best to do all the things that are demanded of
him to do at school and I know it is getting harder and harder for
him. I can't help but to want to pick him up and rock him but he is
almost as tall as I am and I would not dear to wake him. My baby, I
walk over and touch his head very soft and whisper “I love you my
beautiful boy” and walk to the next door and open it just a little. </div>
<div style="margin-bottom: 0in;">
<br /></div>
<div style="margin-bottom: 0in;">
She knows, my teenager girl that has
grown into an adult with in a year because she has already had her
brain surgery. My weep becomes a sob and it's caught in my throat. My
daughter did not get a childhood and now she is left with out
enjoying high school. The guilt of all the years I complained about
my life is so heavy that it wont wash away with reason. She is so
beautiful and strong I admire her so much for who she is and how she
has worked through all her illnesses not once stopping or quitting
school or her goal for a 4.0 . My daughter is the one that pushes me
to move through each day and become a better person. I don't want to
wake her up or she won't fall back asleep, she is always up and down
in the night but I have to make sure she is sleeping well and not in
a seizure. That is a blessing tonight. I close the door and am lost
to the world not knowing what is next for them. I stand alone with
out any control on how to help my children get better but know
exactly what they are going through. </div>
<div style="margin-bottom: 0in;">
<br /></div>
<div style="margin-bottom: 0in;">
Chiari is a cruel disease.</div>
<div style="margin-bottom: 0in;">
<br />
</div>
<div style="margin-bottom: 0in;">
I was always so good at what is , is
when it came to me being ill. I was not mad. I was sad and scared but
I fight with why my children? The only place for me is outside with
my thoughts. As I sit and try to come up with what to do and how to
hang on to this hell we live in. My mind will not stop replaying what
a person said to me. “Well It looks like you got all the bad luck
in the family”. Yep sure does but my children should not pay for
it. Words hurts, like a knife stabbing your heart over and over and
not because I'm sick because my children are.
</div>
<div style="margin-bottom: 0in;">
<br />
</div>
<div style="margin-bottom: 0in;">
I grab the cushion and sit in the
middle of the grass and pray, “please take it away from them give
it too me not my babies let me have it. I'm their mother I should
hold the burden please let me have there illness’s. After my hands
are numb and I ache I go to bed and stare at this wonderful man who
has stood by our side not once wanting to leave. Hell I've wanted to
run for a day but don't and he is always there holding us loving us
working two jobs to try and pay the bills even though I know it will
kill him not seeing our children everyday. Sickness works in a
strange way it can tare and family apart or pull it closer, I know we
are one of the lucky ones. We are closer.</div>
<div style="margin-bottom: 0in;">
<br />
</div>
<div style="margin-bottom: 0in;">
I'm writing this because I have too,
because this is our life because our children are sick and there is
no where else to put it. I want other mothers or fathers to know they
are not alone. Most of all I want the world to know what we go though
living with Chiari. We wait and dream of the day Chiari is not in our
every day life. We dream of it. I thought I have gone through hard
times, there is nothing worse then your child or children being sick
and there is not a damn thing you can do but enjoy a good day or even
a bad one.
</div>
<div style="margin-bottom: 0in;">
<br />
</div>
<div style="margin-bottom: 0in;">
Note: This is written from my life and
our family not all Chiarian families go though this. I know most of
my post have a happy ending or a way to deal with this illness.
Sometimes you need to just wright the truth and not sugar coat it. If
you have medical questions please call your doctor or 911 we do not
have medical staff on site. I send you all love and support and I am
always hear for each one of you.</div>
<div style="margin-bottom: 0in;">
<br />
</div>
<div style="margin-bottom: 0in;">
<i>With all my love and support</i></div>
<div style="margin-bottom: 0in;">
<i>Heather founder of Zipperheads for
Chiari</i></div>
Heatherhttp://www.blogger.com/profile/06322896827980743141noreply@blogger.com1tag:blogger.com,1999:blog-4117022934908081512.post-29710656236435065402012-10-10T00:12:00.002-07:002012-10-10T00:12:33.806-07:00When your child is ill.As parents we hold our babies for the first time looking into there eyes, checking to see if they have all there toes and all there fingers, waiting patiently as the doctor takes our baby away and makes sure they are healthy. Everything about you vanishes because you are now the person's responsible to walk the human you are holding and love so much through life. Willing to push them out of the way of a bus on the road to let the bus take you instead. The love that you have for your children is so big you stop and wounder if the world can hold it or if it will split into for the weight in your heart, spirit and soul is so big for your children. There is nothing you would not do for this perfect human that was given to you to hold, protect and keep safe.<br />
<br />
When your child becomes ill and it does not matter what sickness they have your heart stops beating rite. Your first thought is how can I make it go away and how can this beautiful person be ill. There is no story better or worse when it comes to children and illness just the wanting to fix it. I have never thought I could love my children more but everyday I love them more and more and wounder why this is happening to them? I keep telling myself we are not alone and nether are they but the hollowness in my stomach is not filled because my babies are ill.<br />
<br />
I ask everyday for God to give me there pain there illness so they can enjoy life and I wait with my own faith for it to happen. This is how I am as a mother. Before my children were diagnosed with Chiari and other illness I cried for the children suffering wondering how these strong parents did it. I know how to live with Chiari and other illness and my heart brakes thinking there are children out there in pain including mine.<br />
<br />
So how do we do it? We just do, we have no other option, in our house our daily goal is to have the less amount of stress for them and the most amount of laughter. We feel the sand slipping through our hands that represent helpfulness and we hold on too even the smallest part of sand left. Even at doctor appointments we make silly videos as we wait for the NS or play crazy made up games that make no since and I'm sure the people in the next room can here us all laughing.<br />
<br />
On the bad days we cry together in our family we have stopped trying to show we are not scared because we all are and we are all in this together. We have learned to drop everything if one of our children need something even if it seems small to others because our children need to know we are there for them for everything. We talk with each other and hang out in our back yard or in my bed together all snuggled up because none of us feel well but we need each other.<br />
<br />
There is no one way to be there for your children or a family that is going through this but you need to be there for them. I wish none of you had to go through what my family is going through and I know it will not fill the ache you have to fix your child but we are here for you, we love you and we love all children. No child should feel alone or not supported. No child should should feel the pain of any illness, as a Chiarian, Zipperhead and mother of two Chiarians I am so sorry you are going through this but I am here for you.<br />
<br />
Every child is a blessing and perfect in their own way EVERY child should laugh and feel the weight of love from the world. I send you all love and support. Wishing you joy and laughter to help fill that ache in your spirit and hoping that all can send everyone the same so the world is filled with love, laughter and joy so even on a bad day it can touch the tears we shed.<br />
<br />
<span style="color: #4c1130;"><span style="font-family: Georgia,"Times New Roman",serif;"><i>With all my love I send too all the blessings in the would </i></span></span><br />
<span style="color: #4c1130;"><span style="font-family: Georgia,"Times New Roman",serif;"><i>Founder of Ziperheads for Chiari</i></span></span><br />
<span style="color: #4c1130;"><span style="font-family: Georgia,"Times New Roman",serif;"><i>Heather Graves </i></span></span><br />
<br />
This site is a support group we do not have a doctor on here if you have a question or need help please call 911 or call your doctor. Everything I wright comes from my life experiences in no way I am trying to hurt or mislead anyone. I am all ways available to talk. please go to our information page on facebook for how to contact me. With love and support always. Heatherhttp://www.blogger.com/profile/06322896827980743141noreply@blogger.com0tag:blogger.com,1999:blog-4117022934908081512.post-82677262324708192642012-09-20T01:10:00.005-07:002012-09-20T01:10:55.319-07:00Turns and flips
<div style="margin-bottom: 0in;">
Life has many turns and sometimes for
people flips and slopes that go down to fast that you can't get your
heart from your feet as fast as you wish too. Sometimes as you sit
and watch the sky you can't help but see the only cloud is over your
home and you can't stop but ask when it will stop raining. I and my
family can understand that, we seem to be going through a long down
poor and can't get to the top to get some air. As we hold each other
tight and the panic becomes reality and you stop and look around you
start to see the love you have for the ones your holding on too and
for. </div>
<div style="margin-bottom: 0in;">
<br /></div>
<div style="margin-bottom: 0in;">
If it wasn't like this for me I would
not be able to wright about this and tell you your not alone, your
not alone. Sometimes the simplest words seem to help. I don't know
why and I don't know how to make the sunshine for all of us but we
can see the light within the ones we love. Simple words like “I
understand”, “I'm hear for you”, “your not alone” or even
“it just sucks”. They seem to hold something real with no pity or
fake meaning but it hold a piece of you where you know they mean it.
A simple word or action can change a day for the good or bad. I
wounder sometimes if it's all a lesson and if I've had enough and
then a new lesson comes to my eyes so clear that it seems worth it
all. </div>
<div style="margin-bottom: 0in;">
<br /></div>
<div style="margin-bottom: 0in;">
Through all my illness's, money issues,
family problems finding out who's there for you and who's not seems
almost to hard to bare. It seems to undress you as you stand naked
for the world to see you at your lowest. That's where I've been my
dear friends and I am embarrassed to say I was down in a low point
that I couldn't breath. When I thought we were done with one thing
something else came-a-swing-in. It's still coming and I'm breathing
in the air I'm off the roller coaster ready to walk or fight, run if
I have to what ever it takes to stay up. </div>
<div style="margin-bottom: 0in;">
<br /></div>
<div style="margin-bottom: 0in;">
What happened? Well what hasn't? I'm
not sure the action matters its the root that is the problem and
that's what I'm going to share with you because as always my thought
is “if it's happening to us it has to be happening to others”.
When I was diagnosed with Chiari I was scarred and went through all
the emotions we go through. When our daughter was diagnosed with
Chiari I tried to tell myself its better because I know what she has
so I can help her better. Then when our son was diagnosed as our
daughter is healing from her surgery it hit me. I know how they feel.
I'm on both sides, I understand the parents who don't understand and
want, need to fix them and I'm on the side of the parents that do
understand how it feels and there is nothing to stop the pain. I've
never once asked to be cured because I want to continue to help all
of you in all the ways I can but no child should have Chiari no child
should ever have to feel this pain, no child should ever have to have
brain surgery. It's to much for all of us the parents, the loved
ones, the person reading this for the first time trying to understand
it. It's to much. </div>
<div style="margin-bottom: 0in;">
<br /></div>
<div style="margin-bottom: 0in;">
BUT this is what I've learned, as my
children go through this our family we are closer, we spend more time
enjoying time together. We have stopped judging others cause you
never know what someone else is going though “we don't look sick”.
We love more, we care more, we want to help all more. I'm not saying
I want my children to be sick I ask every day every night for them to
be healed. I want them to enjoy life but we enjoy what we have today
now this second. </div>
<div style="margin-bottom: 0in;">
<br /></div>
<div style="margin-bottom: 0in;">
I'm not in your shoes and your not in
mine but we are not alone in a lot of things and sometimes when it
rains over your house you should find a way to play in the water! </div>
<div style="margin-bottom: 0in;">
<br /></div>
<div style="margin-bottom: 0in;">
I send you all my love every day I send
you my support everyday I love you all so much. This is a paper I am
righting from my life if you have medical questions please ask your
doctor we do not have a doctor on our support group. We are here to
love and support all.
</div>
<div style="margin-bottom: 0in;">
<br /></div>
<div style="margin-bottom: 0in;">
<i>With all my love and support always
</i></div>
<div style="margin-bottom: 0in;">
<i>Heather</i></div>
<div style="margin-bottom: 0in;">
Founder of Zipperheads for Chiari
</div>
Heatherhttp://www.blogger.com/profile/06322896827980743141noreply@blogger.com0tag:blogger.com,1999:blog-4117022934908081512.post-53175572169630443502012-09-01T20:50:00.000-07:002012-09-01T20:50:04.531-07:00Chiari the silent disease that leaves us feeling alone.
<div style="margin-bottom: 0in;">
<br /></div>
<div style="margin-bottom: 0in;">
<br />
</div>
<div style="margin-bottom: 0in;">
I must apologize to all of you I have
not been on for a while due to our illness as I have been fighting
with what should be a normal thing that we all do but my body is
fighting and not letting me go to the bather room. The beginning of
August after dealing with pain I still have and a CT scan they found
that I was blocked for over 3 months. Sadly I sit and nothing has
been done yet but I feel I need to let you all know I am still here
for all of you. </div>
<div style="margin-bottom: 0in;">
<br /></div>
<div style="margin-bottom: 0in;">
Lets get to the topic!!!!!</div>
<div style="margin-bottom: 0in;">
<br /></div>
<div style="margin-bottom: 0in;">
I've always wanted to be able to do
things with out issues or heartache. The challenges that most
Chiarians face in there life is overwhelming and not anything I would
wish on anyone. Even reading was hard for me to do as a child, being
able to understand things, being able to say what was in my mind or
the simpleness of a quite mind. I have always had to work hard and
some of the things like blocking out the car driving by, the air
coming on, the person talking in the next room and the computer
running as I can hear the lights on and the ringing in my ears as I
try to focus on what the person talking to me is saying. Just wanting
to be quite in my mind. Since my surgery and a lot of meditation I
have been able to control some of that but it is work. As we all know
we have to have energy and support to work and move on when you are
sick it can be every hard at times. Chiari is a silent disease and
when I say silent I mean too everyone but the Chiarian. I've asked my
husband time after time what he is thinking about and he says nothing
and at first I thought he was lying because my mind is always
thinking it never stops and somehow I still feel alone. Isn't that
funny.</div>
<div style="margin-bottom: 0in;">
<br /></div>
<div style="margin-bottom: 0in;">
I had my Chiari surgery 3 years ago, my
daughter had her Chiari surgery at 15 years old this year with Chiari
0 and my son at 9 years old has Chiari 1, we all have similar issues
and seizures. If I had one wish, One wish in my whole life it would
be we would all find a doctor that would listen to us, not tell us
what its like or how it is living with Chiari because we know we are
experts on that. I wish we all would have doctors that would listen
and then try to help and not let us go after surgery but keep us and
evolve with us. I wish we wear not singled out with all these
diagnose that all come back to Chiari. And if I can't have that I
wish that for every Chiari child in the world. </div>
<div style="margin-bottom: 0in;">
<br /></div>
<div style="margin-bottom: 0in;">
As I watch all of you
I am so happy to see the positive support you share with each other
and hope it spreads across our community.</div>
<div style="margin-bottom: 0in;">
<br />
</div>
<div style="margin-bottom: 0in;">
Living with Chiari and not being
diagnosed is hard living with Chiari and being diagnosed is hard but
we move forward with each other. As the we look normal and well, we
learn not to assume, we learn to open our hearts to others, we learn
that even when it gets hard there is a lesson we learn that makes us
stronger so we can help someone else. We learn we are not alone and
Chiari is not rare it is miss-diagnosed. We learn to stop and smile
at the person who walks by that looks like they are having a bad day
because we have been there or are there. We evolve to welcome life
and enjoy each moment even with the pain. We grow with love and power
to stop and share our story because we are all important and most of
all we learn to enjoy the little things in life that might have past
us by.
</div>
<div style="margin-bottom: 0in;">
<br />
</div>
<div style="margin-bottom: 0in;">
Chiari is a hard disease as all are. As
you walk to your doctor or to the store the moments of realizing you
are sick or your child or love one is is hunting. The only thing we
want is to be apart of this life and love, laugh and be heard.
</div>
<div style="margin-bottom: 0in;">
<br />
</div>
<div style="margin-bottom: 0in;">
I've miss you all so much I send you
all my love and suppot.</div>
<div style="margin-bottom: 0in;">
This is written from my point of view
and is not from all Chiarian.
</div>
<div style="margin-bottom: 0in;">
<br /></div>
<div style="margin-bottom: 0in;">
<i>With all my love and support
</i></div>
<div style="margin-bottom: 0in;">
<i>Heather</i></div>
<div style="margin-bottom: 0in;">
<i>Founder of Zipperheads for Chiari
</i></div>
<div style="margin-bottom: 0in;">
</div>
Heatherhttp://www.blogger.com/profile/06322896827980743141noreply@blogger.com0tag:blogger.com,1999:blog-4117022934908081512.post-1175211962684409192012-07-24T16:09:00.001-07:002015-03-09T12:54:32.000-07:00<br />
<div style="margin-bottom: 0in;">
This is my story I'm writing as a
person not the founder of Zipperheads for Chiari but as a person that
has a whole family that is sick and the story needs to be told. Today
as you read this there is no cure we are still ill and we are still
fighting to hold on to each other so we feel like we still are apart
of the population. Today I write from my heart because I can not hold
back or be silent anymore. Please open your heart if you are not ill
and just think for a moment what if this was my family what if it
happened to me? What would you do?</div>
<div style="margin-bottom: 0in;">
</div>
<div style="margin-bottom: 0in;">
I use to be a person that would walk
and look up in a window and wounder what there life was like in that
house, now I am that person looking outside my window wondering what
there life is outside. This is my reality. I speak from my own heart
and life it is not so for all but it is for me. Some will take this
and think I'm depressed but I'm not this is my life my reality my
world now.</div>
<div style="margin-bottom: 0in;">
<br /></div>
<div style="margin-bottom: 0in;">
I can remember the girl I was the one
that went with the air, walk on the line to find out how far I could
go. The wild girl, carefree, loving, fun, able to do anything with
out my body telling me I can not. Some would say I was out of
control, I would say I was unable to take someones word I needed to
find out for my self. I always knew I was sick most would not listen
so I stop talking. I always knew I was different but most thought I
wanted more attention. They never wanted to know who I was or maybe
they were afraid. I am me. My reality now is so far from before my
surgery that I almost don't remember that girl so unafraid of life,
how much I wish I had her still.</div>
<div style="margin-bottom: 0in;">
<br /></div>
<div style="margin-bottom: 0in;">
As the seizures take me I can not take
control of my body I am removed as I lay and am engulfed by the pain
in my spine and head nothing else is there no sound outside, no time
nothing but pain that only I can feel. As I try to yell or scream I
am told nothing comes out. I am removed. My husband waits as the
seizure passes hoping this is not the one, the one that will put me
in a stroke or my brain aneurism will finally give out. He watches
helpless and hopes I am not lost forever. This is our reality our
life.</div>
<div style="margin-bottom: 0in;">
<br /></div>
<div style="margin-bottom: 0in;">
Three years ago when my brain surgery
was done for my Arnold Chiari Malformation we had hope that even
though my body was so compromised I might get better that hope is
slowly slipping away as I see it in my childrens eyes. All we can do is pray. This is our life not over exaggerated to
be honest probably under. We live in a bubble of fear of illness.
Little by little it takes more and more from us and we wounder when
it will stop so we can breath.
</div>
<div style="margin-bottom: 0in;">
<br /></div>
<div style="margin-bottom: 0in;">
Every time I go to one of my doctors
witch is at less every 2 weeks it seems a new diagnoses is born in my
list of things they can not fix but have no issue putting me though
test after test that stress my body out that makes me suffer and
makes me closer more radiation that I'm already over the level for.
Now we see this happening to our 16 year old. The doctors I
appreciate are the ones that tell me they will try and make me as
comfortable as possible but this is what I am.</div>
<div style="margin-bottom: 0in;">
<br /></div>
<div style="margin-bottom: 0in;">
Many of us don't look sick and we have
learned to enjoy moment to moment day to day. We smile and laugh. I
have found the beauty in things I never did before and dedicate my
life to try and help any who are sick or need support. As I have
shared a part of our life with you I don't ask for anything but
Please don't assume or make judgment on how are life is. Please don't
say hurtful things, we do and can understand things and we do have
feelings and PLEASE don't make my children or any children suffer
because you may not be able to handle what we are given. The children
do not deserve that.
</div>
<div style="margin-bottom: 0in;">
<br /></div>
<div style="margin-bottom: 0in;">
Thank you for your time I am righting
this from my heart too share a part of our life. You have a choice to
be in our lives or not we don't. <i>With love I give too u all of mine.
Heather
</i><br />
<i><br /></i>
<i>This is not a medical site if you have medical questions please call your doctor.</i></div>
Heatherhttp://www.blogger.com/profile/06322896827980743141noreply@blogger.com0tag:blogger.com,1999:blog-4117022934908081512.post-17191803233416932672012-07-08T23:58:00.002-07:002012-07-08T23:58:27.268-07:00When having Arnold Chiari Malformation surgery<span lang="EN"> <u>When having Chiari Surgery-</u><br />
<br />
When having Chiari surgery, every surgery is a little different with
the different results. The end outcome is to open up the flow from the
spine to the brain and let the spinal fluid flow freely and with out
pressure allowing the brain stem and Vegas never to be able to
communicate with the brain and body with out anything thing interfering
with it. Some Nero surgeons do the regular decompression surgery and
remove or shrink the Cerebellum tonsils some do not. This is a patients
personal choose. I do recommend you to research both surgeries and
decide with your family and Nero surgeon witch is best for your health. I
highly recommend more then on opinion sometimes three or four, until
you feel you have found the correct care for yourself and your future.<br />
<br />
Once you have found your surgeon and have scheduled your surgery you
will go through a number of emotions. The first one will be very fast
and you might not even recognize it. It will be relief but unfortunately
the relief will soon past with two emotions that will be over whelming,
Guilt and being scared. Lets talk about guilt first. Guilt is a funny
thing in this situation because you feel guilty for what you will be
putting others through. Witch in a lot of ways seems silly to the
outsider but it will be there until you handle it head on and at that
moment you wont have time. So you will feel guilt and also you will be
scared on a number of levels. The first will be of course the fear of
not coming out of the surgery, not surviving it. Everyone will tell you
how to feel but your feelings are your own and that’s ok. In this case I
would recommend you to keep reminding yourself that you have chosen
your surgeon and as long as you feel comfortable with that person that’s
all you can do is leave it up to the surgeon and the higher beings… You
will also be scared of the pain, I’m not going to lie it will hurt
afterwards but the good news is it gets better every day. I highly
recommend you to spend time with people that are healthy for you,
support you and will allow you to be you and go through what ever your
feeling and support it. You might want to run away and if you can for a
day or a weekend I recommend it. Get your mind off it, do what needs to
be done for you. This is your body, your brain and your life never
forget that. Please don’t do anything reckless or be irresponsible for
your safety and health but do what you feel you need to before the
surgery. Live some life!!!!</span><br />
<span lang="EN"><br />
<br />
I want to talk to the loved ones of the Chiarian. We try so hard to not
upset you or hurt you any more then we already have. I know I spent more
time worried about everyone else and not enough on my self. I felt I
had to be strong for everyone around me and felt very guilty if I
allowed myself to slip up and show that I was scared and worried and
sad. I was sad I was putting all my loved ones through this. Chiari did
not just happen to me but everyone around me also. So what do we need,
it’s easy for you to just be there. Talk to us, don’t shut us out. Most
important let us go through what ever we feel. Support us on this
journey. Sometimes we will talk about thing that you don’t want to here
but let us talk about it. All we need is for you to love us and be
there. That’s it and with that we can support and love and enjoy the
time spent. Sometimes we don’t need it to be fixed but just to be
excepted. Chiari is hard to except not just for the Chiarian but for the
friends, family and loved ones… <br />
<br />
What should you buy before the surgery- I went on this crazy Pj shopping
spree. All my Pj’s were button ups so I did not have to pull anything
over my head. My mother bought wash wipes that you can microwave because
I could not take a shower for the first 2 weeks after my surgery. I had
a hard time with my skin and nails so I got a very strong lotion for
dry skin. My lips were very chapped after surgery so I had my favorite
lip bomb. Please buy thing that are odorless, because after surgery your
smell might be heightened. I had them buy me lots of magazines, movies,
a neck pillow that was not heavy (had a beanbag filling like what you
would use on an airplane) and Milk magnesia, you don’t want to be
constipated after the surgery and you don’t want to have to push. I know
its scary and hard.. We are all here for you and the family.. <br />
If you need help with fundraisers there is a way to do one yourself.
Please let me Know and I can get you the correct information so you are
not attacked by the IRS with “Taxes”. <br />
<br />
<u>After surgery-</u><br />
<br />
This is were EVERYONE is different. Some will be able to talk on the
phone and go on there computer after wards some will not be able to do
so for a few months. You will be different buts that’s because you are
now a Zipperhead and survived brain surgery. There is an empowerment
there. Most are sick for the first few weeks and that can go through to a
few months of throwing up. This is normal, it sucks but normal.. Please
remember you do not want to be constipated at this time. So please take
the laxatives that you have chosen. Your neck will hurt and that can be
for a while. Your neck hurts because they cut through all the nerves
and it needs to heal. Some will feel relief right after and some will
not.. It is all about how bad your Chiari was and how long it takes for
your body to get to a normalcy. Most Zipperheads have depression after
surgery and this is normal also but this is the harder one. This is were
we have to make sure we find reasons to fight to heal and get back to
out lives.</span><br />
<br />
<span lang="EN"><b>Side note</b>: <i>it's hard because you are the one going
through the surgery but the loved ones that stand by you try and not
close them out talk to them so they can know how to support you and if
you have a loved one have a plan for some one or ones to be there for
them during surgery that will support them as they love you they will
need the support.</i></span><span lang="EN"><br />
<br />
Most of us cry- after surgery we cry and cry. I don’t know why but I
believe it's because we have had brain surgery and the trauma that we go
through not only does our body need to heal, our wound needs to heal
but the brain it self needs to heal and all that can take time. Give
your self the time, allow yourself to heal and as we do and the people
around you need to let you also. You had brain surgery and your life
will never be the same so you need to morn for what has happened and
what has ended. At the same time you never know what door will open for
you so it’s just an ending of a chapter and a new one is beginning. It
just begins with “When I woke up from brain surgery I……..”. <br />
<br />
Weird things will go on with your body and this is when you start the
healing and your body go through swings. For Chiarians we sometimes
forget what it was like before surgery so we are stuck in the now. Some
days you will be overly tiered and this is when the brain is healing
sleep is good!!!! Other days or nights you wont be able to sleep and
this is when your body is trying to find a normal way for it’s self..
Pain will come and go.. Stress will effect you more so try and avoid
it…This is your time to heal so let your body heal. Your never alone we
are here and we have gone through it and will go through it with you! <br />
<br />
This is the hard one, people will leave. I truly don’t know why maybe
they thought after the surgery you would be perfect but we are not no
one is… Some will just pretend you are fine and it will get tiresome and
you might just have to let them go. Mostly I have found I have changed
and grown and it is a good thing for me.. I would never go back and
change anything. I feel lonely and sometimes feel like even the ones who
have been there for me this whole time don’t understand and I have come
to a place where I am fine with that. I miss them but I am me and that
is what I have chosen. I am happy and except what and where I am in my
life..</span><br />
<br />
<span lang="EN">It is very important to keep in mind that our loved ones sometimes go through <i>servile guilt</i>.
As I watch how it has effected my husband as both our kids and I have
Chiari the weight can be over baring this is not our fault or there's.
It means they love us so much they want us not to hurt any more but they
can't fix us. As the days go on pay attention to your other half and
loved ones when your read make sure their doing ok. Maybe have a friend
come by and give them a brake. I know we did not ask to be sick but as
we except our illness we need to be supportive in them doing the same
thing. <br />
<br />
This is a hard process but it does get better if you want it too. You
have the choose to be positive sometimes you will fall and it will be
hard but you have to climb out of the hole and get back up and allow the
positive side of life to shine, you will find your way. This was a
every hard topic for me to right about because I am only on person who
was not blessed with going back to work or living the life that I knew. I
can not drive and seem to be sicker then I was. But, that was not the
surgery that is my life and the path that I am suppose to be on.. We are
all different and we all have different paths. I have chosen not to
live in fear and move forward, I believe you can make the same decision.<br />
<br />
This is a hard thing to go through big or small Chiari, lots of symptoms
or not that many we are all struggling to fight Chiari.. With all my
love and support I will help you fight to find your path in life and
come out of this journey better then when you started!<br />
<i><br />
With all my love and support </i></span><br />
<i><span lang="EN">Heather founder of Zipperheads for Chiari</span></i><br />
<span lang="EN"><br />
<i>Note; this is just from me and my opinion. This was what I have
learned and go through. I high recommend you speak to you NS if you have
any medical condition questions I am not a doctor or in the medical
field. I‘m just here to give my love support and share my story with all
the love in my heart. </i><br />
<br />
<br />
</span>Heatherhttp://www.blogger.com/profile/06322896827980743141noreply@blogger.com14tag:blogger.com,1999:blog-4117022934908081512.post-85007684129213756072012-07-01T00:58:00.004-07:002012-07-01T00:58:52.324-07:00So tired of being sick,<br />
<div style="margin-bottom: 0in;">
<br />
</div>
<div style="margin-bottom: 0in;">
As most of you know being sick is not
something that you choose to be although we seem to be blamed for it.
I try to rap my mind around how it is not to feel bad but its been so
long long I can't. Chiari is one of those disease that you feel good
enough to function and then “BAM” your hit. Crashed down for a
week or a few days. Most don't understand that most of us have had
side effects from Chiari our whole life (at less I have) with
something holding us down and even though having a name to put it on
it only helps in the beginning. A finder binder, a bump, a fall, a
jurk the wrong way can put us in so much pain. It is so hard to keep
reminding people we are sick. I don't want to be sick I'm tired of
it.
</div>
<div style="margin-bottom: 0in;">
<br />
</div>
<div style="margin-bottom: 0in;">
As we keep moving and working on
ourselves we still have our bad days and they need to be talked
about, not a bitch fest but talk about. Today I'm gona talk about
just that. So please bare with me if its not as positive as normal. I
have lost to many friends and sacrificed so much because of Chiari
that it is overwhelming. I'm not depressed or sad I have Chiari,
Chiari has made me stronger and more loving more understanding to
those ill. Like other Chiarians it's not just Chiari we deal with
it's a mound of illnesses that effect us every day. And even though
we walk with our head high it's not easy.
</div>
<div style="margin-bottom: 0in;">
<br />
</div>
<div style="margin-bottom: 0in;">
I am 35 years old and I can not clean
my house. I can not drive, I can not do many things. I constantly
have to hold back and remember that others that are ill are not in my
place and I need to understand that, but as I sit and watch others
get more understanding of there illness it is hard. All because
Chiari is not know to the population. I often feel my body is at war
with me and struggle to keep up. You all know what I say “If I
feel this way how many of you feel this way”?</div>
<div style="margin-bottom: 0in;">
<br />
</div>
<div style="margin-bottom: 0in;">
In many ways I am blessed I am very
loved with my family I have, the friends that have stood by my side
and you, all of you. So what do we do?</div>
<div style="margin-bottom: 0in;">
<br />
</div>
<div style="margin-bottom: 0in;">
Most days I will not let it knock me
down, I learn what I need too and move forward. I find the gaps and
try and fill them. I turn my hate into love because in the end it
only hurts me physically. It is not easy and very hard too do on the
days that will not let up. So we need to reach out stay close and
become one.
</div>
<div style="margin-bottom: 0in;">
<br />
</div>
<div style="margin-bottom: 0in;">
Zipperheads has now been up for 3 years
and as I wright this I think of all who we have helped and when I say
“we” I mean all of us you and me. So this is my advice. Do what
makes you happy, live life the way you want to and can. Enjoy the
small things that come to you and thank it. I'm not a survivor I am a
person that lives with a disease that just keeps-on-keepin-on. And
even the bad days I know I am not alone and we are out there sharing
our stories and loving each other, embracing the the new and loving
the ones we already know.
</div>
<div style="margin-bottom: 0in;">
<br />
</div>
<div style="margin-bottom: 0in;">
To our family and friends thank you for
being there for us, please be patient with us as we try to hold the
sand in our hands sometimes the sand falls too fast and as we know it
is hard on you we try so hard to be strong so you don't make you
suffer also because it hurts us so much to watch you in pain. But
please remember we will always be holding at less some sand to share
with you with love.</div>
<div style="margin-bottom: 0in;">
<br />
</div>
<div style="margin-bottom: 0in;">
My loving Zipperhead family you are
never alone we are always here for you. This was written buy the
founder of Zipperhead for Chiari Heather. I write this from my own
experiences. If you have a medical issue please call 911 or your
doctor.
</div>
<div style="margin-bottom: 0in;">
<br />
</div>
<div style="margin-bottom: 0in;">
<i>I love you all with support always.</i></div>
<div style="margin-bottom: 0in;">
<i>Heather
</i></div>Heatherhttp://www.blogger.com/profile/06322896827980743141noreply@blogger.com0tag:blogger.com,1999:blog-4117022934908081512.post-27948509520529271922012-05-21T19:56:00.004-07:002012-05-21T19:56:44.977-07:00Why I started Zipperheads for family and loved ones as well as Chiarians and Zipperheads.<br />
<div style="margin-bottom: 0in;">
<br /></div>
<div style="margin-bottom: 0in;">
When I was going into surgery in 09 I
had a team of friends and we wear looking at starting a foundation, I
choose not to do a foundation and start a support group because I
wanted our message to not get lost with money involved. To be honest
with you all after surgery I forgot about the support group for a few
months and was very surprised I had followers. At first is was
suppose to be a support group for Chiarians and Zipperheads. We named
our support group Zipperheads for Chiari because of the scar we are
left with and I had a hard time with my scar and wanted to face my
fear head on.</div>
<div style="margin-bottom: 0in;">
<br /></div>
<div style="margin-bottom: 0in;">
It was not until about 6 months I believe until I
realized how much it effected not only my family but also my loved
ones and friends. What I was not expecting was so many friends and
family that stopped supporting us after my surgery. That is a very
big one to swallow and still have a hard time with it.</div>
<div style="margin-bottom: 0in;">
<br /></div>
<div style="margin-bottom: 0in;">
I have a very
good friend that came to our house months after my surgery he was
stand-offish and so me being me I asked him to talk to me about it.
In short I found out that one of our dearest friends had a very hard
time not knowing what to do to support us and how scared he was about
losing me. It was a conversation I will never forget because for him
I opened Zipperheads for Chiari to all that are effected by Chiari.
It suddenly did not become all about my illness but also about the
loved ones suffering too. </div>
<div style="margin-bottom: 0in;">
<br /></div>
<div style="margin-bottom: 0in;">
Where do they go for support? </div>
<div style="margin-bottom: 0in;">
What do they
do for us?</div>
<div style="margin-bottom: 0in;">
How do they help us?</div>
<div style="margin-bottom: 0in;">
How do you sit by and let something
take over our dear one and you can do nothing? </div>
<div style="margin-bottom: 0in;">
And watch as there is
no escaping!
</div>
<div style="margin-bottom: 0in;">
<br /></div>
<div style="margin-bottom: 0in;">
Chiari is a very hard disease because
most of the time we as Chiarians do not understand what is going on
and our doctors are not up to date with the new research. Researching
Chiari on the net almost seems like a joke unless you know where to
go and it is very scarey. Our loved ones seem to think they can not
come to us for support , I at less would love it. We feel so left out
most of the time this is something we can bond with and understand
each other. I would not recommend playing the “well how do you
think I feel game”. That goes no where. </div>
<div style="margin-bottom: 0in;">
<br /></div>
<div style="margin-bottom: 0in;">
There are many things our
loved ones can do for us but the most important is to treat us as a
person and also remember even though we may not look sick we are. I
have a very good friend that gets me out of the house a few times a
month and I look forward to the drive, we laugh, sing, talk and just
have fun! The biggest thing we want is not to be left. You can help
us by being there for us and letting us be there for you, we will
always have stuff going on in our world its nice to focus on
something else. There is nothing a person can do for a Chiarian to
improve on there life but there doctor and the Chiarians mind set. We
just want to be our self’s and if you loved us before we were
diagnosed well you loved us when we had Chiari you just did not know
it so the only thing that has changed is somethings we can't do, some
of us have had brain surgery and we now know we are sick BUT we are
still the same person just growing hopefully for the better! </div>
<div style="margin-bottom: 0in;">
<br /></div>
<div style="margin-bottom: 0in;">
There is
no cure for Chiari and that sucks I have a question for all the
family and loved ones does it matter? Would you hang out with us more
if there was a cure or love us more? Would you come by more or invite
us to more parties?</div>
<div style="margin-bottom: 0in;">
<br /></div>
<div style="margin-bottom: 0in;">
I started before being diagnosed with my house
full of friends and always being around people, now I'm lucky to see
a friend a week. I have family that will not support my children and
I during our illness and have lost many friends and still are losing
them. It hurts, that hurt does not go away. I do know who my real
friends are and who really cares and I am so lucky. It may seem I'm
bitching or complaining but I'm not I'm just explaining how it has
been for us the past 3 years.</div>
<div style="margin-bottom: 0in;">
<br /></div>
<div style="margin-bottom: 0in;">
I want to say this from all my love, I
understand it is not fun to listen to us being sick and it not
ending, Imagine how it is for us! To all my Chiarians and Zipperheads
we need to just keep rollin forward learn and keep going. Zipperheads
for Chiari is for all and we made it that way so we could support
with love everyone. The loved ones that have been there for us thank
you so much you have no idea what you have done for us, we love you
all so much. </div>
<div style="margin-bottom: 0in;">
<br /></div>
<div style="margin-bottom: 0in;">
You truly are shinning stars in our life!
</div>
<div style="margin-bottom: 0in;">
<br />
</div>
<div style="margin-bottom: 0in;">
This is a page from my experience I am
not talking for all Chiarians. I am speaking from my heart and not in
any way trying to hurt anyone. I love you all with all my support.</div>
<div style="margin-bottom: 0in;">
<br /></div>
<div style="margin-bottom: 0in;">
<i><b> Heather founder of Zipperheads for Chiari.</b></i></div>Heatherhttp://www.blogger.com/profile/06322896827980743141noreply@blogger.com1tag:blogger.com,1999:blog-4117022934908081512.post-33473273592653433132012-05-10T01:12:00.002-07:002012-05-10T01:13:51.716-07:00When we are Ill,<br />
There is a<i> magic</i> that we all have in
us, a gift some may say or call it. Sometimes we lose it or forget
about it but it's still there waiting for you to open it back up and
share it. This <i>magic</i> we all have is hard for us to use everyday. When
we are Ill or watching a love one suffer we forget we have it in us.
We seem to get caught up in our daily life and forget about how
wonderful life is. That can be a truly hard thing to do when your
ill. As a person who is sick and has children with the same illness I
find myself forgetting about my <i>magic</i>. I find my self grasping for
air at times and wondering what have I done to live with so much pain
but most of all watching my children live with the same pain.<br />
<br />
I seem
to forget about the <i>magic</i> when I focus on the family and friends that
are not here and do not support us because it hurts so much. Then I
some how get a slap in the face and no matter how bad I psychically
feel I remind my self of my <i>magic</i> my gift my blessing and that is,
what keeps me going. I can not make anyone be there for us or help us
or even expect them to understand if they do not want to because that
is unfair. The only thing I can do is be the best human I can and
use that<i> magic</i> the best way and so I hope I do.<br />
<br />
<i> I call our human
connection our human understanding and human love magic. When you
step back and think of what those 3 magical things can do for you and
others it really is magic.</i><br />
<br />
Everyday is hard, it is not a walk in the
park or a nice Sunday drive our life is staring us in the face every
moment we have and we try and embrace it with some<i> magic</i>. It's the
hardest thing I have ever done but I don't give up. I have had to
reach out to others for support and find my own way to get where I am
this is how I live my life and how we deal with it. I live in a house
with 3 Chiarians ages 36 to 9 years old and it's hard.<br />
<br />
It's unfair we
all suffer but you have<i> magic</i> too. Even on the bad days of the pain
and sadness your <i>magic </i>can make it just a little better. I know I'm
not alone and you are not either but it is hard not to feel alone
during the part of the days when you are left with your thoughts. One
of my journeys was to be able to be alone with my self and enjoy it.
Once I was able to do that I was able to open my <i>magic</i> up and share
it. I want to share my <i>magic</i> with all of you. Know matter what
illness you have it is Chiari, Cancer, Chronic pain or an other
illness or a loved on that lives with a ill person you are not alone
and you have that <i>magic</i> to help yourself so you can help someone
else.<br />
<br />
<div style="background-color: white; color: #4c1130;">
<i>Life is to short and to hard to not enjoy your magic!
</i></div>
<div style="margin-bottom: 0in;">
<br /></div>
<div style="margin-bottom: 0in;">
<i>With love and support
</i></div>
<div style="margin-bottom: 0in;">
<br /></div>
<div style="margin-bottom: 0in;">
<b><i>I send my </i><i>magic too all of you</i></b></div>
<div style="margin-bottom: 0in;">
<br /></div>
<div style="margin-bottom: 0in;">
<i>Heather Founder of Zipperheads for
Chiari <3</i></div>Heatherhttp://www.blogger.com/profile/06322896827980743141noreply@blogger.com0tag:blogger.com,1999:blog-4117022934908081512.post-33729314836933422272012-05-02T13:26:00.000-07:002012-05-02T13:26:08.922-07:00My story 1<br />
<div style="margin-bottom: 0in;">
I have always wanted to tell my story
the problem is that it keeps going. I assume that is a good thing. I
always have thought that to tell a story you need to start from the
beginning but I'm going to start from the “now” because that is
how I live my life. I use to live in the past and some times find
myself looking back but I'm not suck there or in the future, I'm in
the here and now as much as I can because I don't know what will
happen next. My name is Heather and I have Chiari it is a brain
disease I got from my father being exposed to Agent Orange while he
was fighting in the Vietnam war. Both of my children have Chiari also
and they have different fathers so I know it comes from me. </div>
<div style="margin-bottom: 0in;">
<br /></div>
<div style="margin-bottom: 0in;">
I was
diagnosed in 2009 and had surgery 7 months later but I lived with
symptoms my whole life. I thought I just did not fit into this world,
I was not good enough or smart enough. Maybe I was not as pretty or
skinny, maybe I needed to try harder and change myself (that I could
never do) or maybe I was just not meant to be loved. After my surgery
I have changed a lot, I still wanted the love and could not
understand what I was doing wrong because the sicker I got the more
people I lost. And I tried, I gave as much as I could, I let people
run over me, use me, take advantage of me and I was ok with it
because I was making them happy but I was not happy. Until I just
stopped and let it be what it was. It's funny how we see our self’s
and how others see us, it is very different. I spent many years angry
on the wrong that was done to me until first I excepted the wrong I
had done and then I then I just slowly let go- very slowly but I
started letting go.</div>
<div style="margin-bottom: 0in;">
<br /></div>
<div style="margin-bottom: 0in;">
I had the surgery to late and Chiari has effected
parts of my body and I am what I am but I am here. I have seizures
and so does my oldest child, I have memory issues, I have a brain
aneurism and with my great luck it is where they can not operate on.
I also have other health issues that I have excepted. I lost my
daughters father before she was born but gained a best friend a
amazing husband. All of this can still be in the now because it makes
me who I am, it reminds me to be more loving and give more human
compassion because you never know what that person has gone through
or what road they are going down in life. For 2 years I looked at
myself and saw a sick person and I wanted Heather back not a
Chiarian until I realized they are the same as long as the sickness
dose not come first. My whole life I have wanted to be a singer and
I can't be the one on a stage but I can sing in my backyard or in the
house or where ever I am. </div>
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<br /></div>
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When our 9 year old got diagnosed with
Chiari he was so upset he throw up. The next day I sat him down and
asked if he felt different? He said no. I asked if he played
different, he said no. I asked if he see's him self as someone else
and and he said no and I said well that's the only thing that has
changed is education on how you where made and what we need to do to
help you be the healthiest and happiest person because you were born
with Chiari and that dose not mean you have to change who you are it
makes you stronger. My beautiful little man said “oh that's all?”
and I said mostly yes. We talked about the surgery but all in all
that's it.</div>
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Chiari has opened my life up I have chosen to except the
positive and move forward and always try very hard to enjoy the
“now”. This is not a fix or a cure but it can help enjoy life. I
live daily with pain and my life is not roses. I choose not to hand
out a bunch of BS and be me. I have lost many “friends and loved
ones” because of Chiari and it has hurt dearly. The thing that
hurts the most is my children and husband have lost and it is unfair.
For the first time in my life I can sit with my self and be happy. I
enjoy the little things that are given to us.
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Living with an illness is hard we don't
need to make it harder on our selves. Every night I send love and
light to the world because I love you all and because I care. Even
when the sky falls on you, you are still not alone and the love is
still there to support you as it falls. That is the beauty of human
compassion you have it because you want to give it.
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I love you all, I support you with
love. This is my story I am sharing. Zipperheads for Chiari is not a
doctor site and we do not have doctors on site. If you have a medical
issue please call you doctor or 911.
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With all our LOVE </div>
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<i>Heather</i></div>
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<i>founder of
Zipperheads for Chiari</i></div>Heatherhttp://www.blogger.com/profile/06322896827980743141noreply@blogger.com0tag:blogger.com,1999:blog-4117022934908081512.post-70873340282050754922012-03-27T12:04:00.000-07:002012-03-27T12:04:39.289-07:00The Storm of being sick.<div style="margin-bottom: 0in;">When the storm comes and hits you and your family the seasons become one, the days become one and so do the years. I am just one out of many family’s that Chiari and Syringomyelia has come in and affected. With pain, confusion, hurt, and disappointment. It is hard to see a positive side to all of this and sometimes there may not be one. Except for how you live your life and help others.</div><div style="margin-bottom: 0in;"><br />
</div><div style="margin-bottom: 0in;"> In our home it consist of my husband needing to get me dressed after a seizure and most of my day not feeling well and that he has been there for me like that for almost 3 years now but no one else see's that. On the same day I have to try and answer to my 15 year old on how and why she has to go through this and not have a normal teen life. With my daughter the surgery was worth it and she will come see that but it never makes it easy or the pain go away. That's one of the hard parts about being a parent, making those decisions and hope it is the correct one. </div><div style="margin-bottom: 0in;"><br />
</div><div style="margin-bottom: 0in;">So where is the positive side that I always find and flip? Well I think the first thing we need to make sure people know and understand is this is not a rare disease and that it is also a serious one. Chiari ans Syringomyelia is mostly just misdiagnosed.</div><div style="margin-bottom: 0in;"><br />
</div><div style="margin-bottom: 0in;"> It's time for our loved ones to step up that have not and be there for all of us. We did not make this choose and our family's and friends should be there. If they are not there it is not an excuse, there is no reason it is a chose they make and it is selfish and mean. I was talking to one of our Chiarians today who will have surgery at the end of this month and like me one of her sisters do not support her. Trying to understand there action or reason with them seems to only hurt us. I know this may not seem like my normal article but this is something I hear from every Chiarian I talk too and I go through this in my life and watch it in my daughters. This is what I say to them “ I love you but I don't respect you. I'm here and need you and may always need you but I know in my heart I would never do this to you. So I have to say good bye because it hurts me more physically and I have to make sure I am not making my self sicker. I love you but good bye.” </div><div style="margin-bottom: 0in;"><br />
</div><div style="margin-bottom: 0in;">The positive side to this is that you have to put your self first, your child first, loved ones that are sick and everyday even the bad ones should be treated like your favorite book that has a new chapter you have never read. The positive is we see the love and in brace it we see the good and hold onto it. We see the wrong and turn it to the good because we have a purpose. Once you walk into this storm you treasure ever blessed moment even if your sitting outside watching the wind blow the trees or sitting on the coach just watching your loved ones, “or that good day that you go out and in brace the world that is waiting for you. You never know who you will met”.</div><div style="margin-bottom: 0in;"><br />
</div><div style="margin-bottom: 0in;"> My name is Heather I have Chiari I am a Zipperhead but please hear me when I say I'm NOT a number or just another face I hurt, I like to smile and laugh also just like you. My daughter Emalee is 15 yrs old she likes all the same things too she is not a number she a person first who likes to be silly. We are humans and we want to be treated as humans. </div><div style="margin-bottom: 0in;"><br />
</div><div style="margin-bottom: 0in;">I send love and support to all. My name is Heather and I am the founder of Zipperheads for Chiari. This article is based on how I feel and what we have gone through in our home. If you have medical questions please all your doctor there is no doctor on this site. We are here to send love, support all, Chiarian, Zipperhead, Syringomyelian, Family and loved one and anyone else that is sick. We are called Zipperheads because of our scare after surgery. We except all human life with love.</div><div style="margin-bottom: 0in;"><br />
</div><div style="margin-bottom: 0in;"><i>With all my love and support </i></div><div style="margin-bottom: 0in;"><i>Heather </i></div>Heatherhttp://www.blogger.com/profile/06322896827980743141noreply@blogger.com2tag:blogger.com,1999:blog-4117022934908081512.post-4527829405162485632012-03-15T13:49:00.000-07:002012-03-15T13:49:15.832-07:00Its hard to know where to go from here.<div style="margin-bottom: 0in;">If its after were diagnose, had surgery or months or years after surgery its hard to know where to go now. Our life has changed for the good and the bad. But it has changed. As we are in the community of all illness's we don't really fit because most people have not heard of Chiari. So we have to make a discussion on how you will move forward. Will you let this disease take your life and go down with it or will you rise up and grow from it? This is not a easy discussion to make and some days you may go back and forth feeling like you are on some amusement ride that we can't ride but our life is like it and the ride person that stops the ride forgot to let us off. So are you going to enjoy the ride or be scared that you can't get off? </div><div style="margin-bottom: 0in;"><br />
</div><div style="margin-bottom: 0in;">There is a time in our life that we have to take our life back and make it what ever we want it to be. Push the negative away engulf yourself in the positive love that is there for you from many. How can we do this? Learn what you want now, not then or latter but now. Look at what has been and find what you are meant to do. As much as Chiari has hurt us don't let it anymore stop letting it rule your life stand strong Chiari is over 100 storms and more but stand strong and move forward.</div><div style="margin-bottom: 0in;"><br />
</div><div style="margin-bottom: 0in;"> In this I have learned that the most frustrating thing is that people don't know, heard of or understand Chiari, so teach them. If your child has it go to there school start teaching them what it is. If it is your family or friends talk to them and send them love and let everyone know it is ok to be scarred. We stand on our own two feet alone but together and you are the only one that can move forward. Fallow your heart learn your body and then teach. We don't need doctors to tell us how we feel we need them to help us get better. The rest is up to us, you, me, your child, your friend, your partner and the loved ones. </div><div style="margin-bottom: 0in;"><br />
</div><div style="margin-bottom: 0in;">I’m not the Chiari house I am Heather and I have Chiari. Chiari does not get to take my life I get to make the choose of what I do. There are limitations but I learn from it and rise up and stand in front of the ones that pushed me down and send them love. I washed away the anger and let life in to enjoy what I have and what I can give and that is my love, support, my teachings and myself to all who needs or wants it. </div><div style="margin-bottom: 0in;"><br />
</div><div style="margin-bottom: 0in;">This is just one Chiarian, Zipperhead, Mother with a child with Chiari saying I love you I support you and you are never alone never. </div><div style="margin-bottom: 0in;"><i>With all my love and support Heather Founder of Zipperheads for Chiari </i></div>Heatherhttp://www.blogger.com/profile/06322896827980743141noreply@blogger.com0tag:blogger.com,1999:blog-4117022934908081512.post-45960621976643031662012-02-18T22:37:00.000-08:002012-02-18T22:37:12.100-08:00I made this site and support group to reach out and hope that I was not alone, almost 3 years later I find that we are so not alone! We are needed in this world of craziness. I have always been a fire ball of a person and have always put people in front of me, people use to and sometimes still do tell me that it is a bad thing until I come on here and my blog and see what "we" are doing, making a change.<br />
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I was raised at a very young age to love and give to others and I took that to heart. Boy I had know Idea where I'd be at 35 years old. None of us did. But I or the admins on this page could not be spreeing love and support with out all of you. You all are as important then anyone on this page. Together we become stronger and more aware that Chiari is not rare and not an easy disease to live with but we are not alone.<br />
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I have a new saying that I believe as much as the fact that I have Chiari, "We are never alone, we are not born alone, we do not live alone and we do not die alone and we are all loved".<br />
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I have watched my 15 year old daughter go through getting diagnosed with Chiari having the surgery and now is recovering. I must say I wish I could take it away from her but I can't so what I do is go further down the line to find out why we have this disease and I promise I will find it. This is a very hard road to walk but we are never walking it alone, we walk together. <br />
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The only way to make Chiari known in this world is to all come together and stand as one. Educate your self learn how your body works read how your nerves system works, keep a medical journal, learn the laws of the medical world. Become your own advocate and if you can't ask for help. Don't take the information as hear say look it up read the NS's articles education is the only way we will become better. This disease is evolving not only in our lives but the medical world also. We need to become one. The reason I'm not on here all the time is because I am researching not only for my child but for all the children. It's time to take the fear and negative thoughts out of how we think and start thinking on how to live and not let Chiari rule our life's. I promise I understand it is not easy but it can happen and make a different not just in your life but in our community.<br />
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My name is Heather and I am the founder of Zipperheads for Chiari our main goal is to send love and support to all that are effected by Chiari.<br />
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<i>We are always here for you with love and support. </i>Heatherhttp://www.blogger.com/profile/06322896827980743141noreply@blogger.com0tag:blogger.com,1999:blog-4117022934908081512.post-41924187506800485282012-01-23T21:27:00.000-08:002012-01-23T21:27:09.854-08:00<div style="margin-bottom: 0in;">When I was diagnosed with Chiari I was scared, reveled, upset, sad, alone, confused and all of the above. Some people (family and friends) still at this time hold the things I went through over my head. As a person that is ill we know that there are many steps in what we go through and some we don't remember and some we except and move forward because we have no choice but to learn and grow. Then we have the issue with the friends we have that have not been forced to grow with us and we don't grow in a year or a decade we grow when we come out of surgery.</div><div style="margin-bottom: 0in;"><br />
</div><div style="margin-bottom: 0in;"> When I say grow-my meaning is we become the person that was inside us the whole time the one that was fighting to get out the one that was lost with the confusion and the miss firing of our brain and CSF not getting to our brain to allow us to reach the places we knew we could. There's a double edged sword there because we have to give up something also. The person we were told we were. We became use to believing all of the lables they have put on us- ADD, ADHA, By-ploy-er, loud, angry, hard to be aground, stupid, not educated, a bad speller (lol) and so many other things to be honest I don't think im any of those things I have Chiari. But deep down there was something wrong we knew we weren’t crazy right? If we could just be “normal”.</div><div style="margin-bottom: 0in;"><br />
</div><div style="margin-bottom: 0in;">(This may not apply to ALL Chiarians and that is why I am going to state this now this is my impression of living with Chiari and watching my daughter go through it.)</div><div style="margin-bottom: 0in;"><br />
</div><div style="margin-bottom: 0in;"> After surgery I was sad no doubt about it I had lost apart of me I became use to and had no idea where to go next. And I cried and cried and 3 years later still cry I have lost so much and gained so much more. I am who I am, we are who we are and that’s ok. We did not choose this, this is who we are. We are sick and that sucks, we hurt and that sucks, and we feel alone and that hurts. Anyone who tells you that when you come out of brain surgery you will be the same they are lying it can't happen we change and have to close the chapter of the book even if we weren't ready to. Then we grow even if we aren't ready and we change, people will say we are the same but we aren't and it is not easy. Chiari is not easy nothing about it is. </div><div style="margin-bottom: 0in;"><br />
</div><div style="margin-bottom: 0in;">As I write this to you my daughter will have her surgery on the 30<sup>th</sup> of this month and at first I was happy I knew about it, went through it, live it, have a support group and educate people about it. It's a double edged sword, some times it helps and then it is the worse because I know what will happen I know what they will do, I know what the surgery is all about. So I sit here and think what do I want you to know when your reading this! Well the first thing is grow please push the negativity away and grow. The second would be your not alone, the mother that hurts, the father that can't fix it, the friend that feels useless the loved one that is angry because we are sick your not alone because we feel all that too and all we want is to be loved and wanted around. The third thing I want all of you wonderful people to know is your loved, your wanted, your hurt is real and we want to hear it and we want to support you. Even if we have to let go and grow all we want is to be supported because the secret is we are all scared. </div><br />
<div style="margin-bottom: 0in;">One person can send love to another and the love will grow- too 1000 people. Send your love</div><br />
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<div style="margin-bottom: 0in;">This is my way of expressing how to live with Chiari not all experience this I am not a medical perfection I’m just a human with Chiari that wants to send my love and support always.</div><br />
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<div style="margin-bottom: 0in;"><em>Heather-founder of Zipperheads for Chiari</em> </div>Heatherhttp://www.blogger.com/profile/06322896827980743141noreply@blogger.com0tag:blogger.com,1999:blog-4117022934908081512.post-64024606773622923322012-01-12T15:54:00.001-08:002012-01-12T15:54:13.151-08:00Living with Chiari<span lang="EN"> Living with Chiari or having a loved one suffer from it can be overwhelming. We often forget the parts we are responsible for and look to the doctors or others to take care of this issue. The emotional roller coaster we live is overwhelming. <br />
I wanted to talk about helping your self. This is a topic that everyone suffers with even when healthy. We are in a danger zone for depression and even the people who take care of us. Chiari is a very difficult disease to live with. It effects “everyone” around you in many ways. Some talk and read and breath Chiari, some don’t want to hear about it at all. What we need to do is find a healthy medium. <br />
I was one that did not understand when I was diagnosed. So like many, I went crazy on researching this Arnold Chiari Malformation, boy was I scared… I joined every group got every book read every article. This for some reason never made me feel better. I focused on the information and not my emotions. As you can imagine all the information had me more confused more scared and pissed off. Yes, I was very angry. I can remember saying so many times, “Why ME”? I still find my self saying that and stop my self going down that road. <br />
I am not one of the lucky ones that the surgery made me 100% better. I am in no way regretting my surgery but had to fess up to my responsibilities in order to get to a positive place in my life. What responsibilities you ask ? Well let me explain.. I went into the surgery understanding that this was a staple and not a cure but I never really expected that. Just like so many others thought, this will fix me.. I will just do what I do and that is that … HA HA, wrong again. I had no idea it would STOP my life, change my life and there was NO going back. This was a very hard time for me, I felt alone and scared and as many others have thought: I would have everything anyone else with Chiari had. The joke was on me I came out of surgery and have issues I never read about. Why, because Chiari affect the persons body in there own way. Yes, we have some similar symptoms and yes, we can understand what someone is going through, but our body’s are all different. They heal and deal in there own way. What I was not expecting after the surgery was that it was time for me to change my life.<br />
Stress- This is a huge part of my symptoms I go DOWN hard under a lot of stress.. The funny thing is that my whole life has been full of stress and my ability of letting go was zero. The more I hung on to the stress the sicker I was. Walking a way from stress is not easy and letting go is harder, but it does not hurt the other people in my life as much as it physically hurts me. So, one day I said enough!!!!! I can’t do this, I was in bed missing my children’s life all over what I was allowing the stress to do to me. As I have said before, If you can not fix it, change it or take care of it now put it on the shelf and walk away. Trust me it will still be there when you are ready to deal with it. <br />
We all have responsibilities. Do you really think about the first one being yourself. If you are not healthy and emotional stable you are in know way able to take care of anyone, know one… Yourself needs to come first. Our doctors take care of what they can but this is our life and our body. Our first responsibility is to accept what and who we are. Push away the negativity, stress and the people who do not support you or give you the love you need. Be reasonable about what you are after, take the steps you need to improve your life, don’t try and change the world in one day because it will never happen. Start with yourself, you are the most important person. I am a mother of two and my children have never been happier than now. If I fall off then I get back up and move forward. <br />
If you are a loved one for family member this can help the Chiarian more then you know.. Please make sure you are taking care of you. We need you all to be healthy and we never forget about your battles and your struggles with us. We thank you and you are so important to us we always want to make sure you are healthy and strong in a positive way!<br />
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<em>This is my opinion: I am just a Chiarian trying to help others from my own experience. If you are feeling that you may hurt your self or others please call 911 or go to the ER. I am not a doctor, I am just a Chiarian.</em><br />
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With all the love and support I have I give, I give too you.</span>Heatherhttp://www.blogger.com/profile/06322896827980743141noreply@blogger.com0tag:blogger.com,1999:blog-4117022934908081512.post-82462743690177387262012-01-09T15:52:00.000-08:002012-01-09T15:52:40.755-08:00<div style="margin-bottom: 0in;">Just some reminders Zipperheads for Chiari is not a medical site. We do not have doctors on our site to give out medical advice that can hurt any persons medical situation. ( If you do have a medical question or a medical issue please call your doctor or 911) because we are not a medical support group and do NOT have doctors on site we can NOT advise any persons to take medication or medical procedures it is against the law for us to do so because we do not know the person's history and are not medical doctors. </div><div style="margin-bottom: 0in;"><br />
</div><div style="margin-bottom: 0in;">We can tell our story’s help people understand what we know with the understanding that we are not medical staff. This can be hard since we are the expert on the disease of Chiari living with it daily. Sharing your story and what has happened and where you are now can help more then anything else. We can help support and love Chiarians, Zipperheads, family and loved ones on the journey that they go though. We are growing fast and that is amazing. As we grow we need to keep in mind that some are new to Chiari and need our love and support.</div><div style="margin-bottom: 0in;"><br />
</div><div style="margin-bottom: 0in;"> Fear, incorrect information, medical advice, negativity, religion, racism and any other form of hurting anyone in there journey is not allowed on our page if you do so you will be asked to leave and not welcomed back. This is a place for us to talk about what we go through find the positive and move forward even when it is a small step. </div><div style="margin-bottom: 0in;"><br />
</div><div style="margin-bottom: 0in;">As all of us have or are going though the questions of, why, what is this, how did I get it and what do I do about it, we need to remember on easy thing- You are not alone. did that fix it "no" but it helps. Please remember to love all and always be respectful to each other we are a family we love with out judgment. </div><div style="margin-bottom: 0in;"><br />
</div><div style="margin-bottom: 0in;">Chiari is a disease that affects us all in different ways we need to be supportive with love always. If you are unsure of your post please go to our information page and look at the rules. We are here to educate with correct information have links that are from medical professionals and understand that Chiari is evolving in our medical society. </div><div style="margin-bottom: 0in;"><br />
</div><div style="margin-bottom: 0in;">Please just keep in mind that it is hard for all of us, we have good days and bad. When a bad one comes ask for some love- when a good one is with you give the love. We are not alone we are together in this fight with Chiari you are not alone.</div><br />
<div style="margin-bottom: 0in;">Support and love always</div><br />
<div style="margin-bottom: 0in;"><em>Heather-founder of Zipperheads for Chiari. </em></div><br />
<div style="margin-bottom: 0in;">If you would like to get a hold of me my number is 530-204-3904 I would love to talk to you and support you.</div>Heatherhttp://www.blogger.com/profile/06322896827980743141noreply@blogger.com0tag:blogger.com,1999:blog-4117022934908081512.post-76794191264980197932012-01-02T01:30:00.000-08:002012-01-02T01:30:35.375-08:00Journeys<div style="margin-bottom: 0in;">We all have our journeys and it is hard to understand what others are going through. When people are sick and we choose to stop and listen it seems to change not only us but the way people react to us. Some are more open and some are more closed and this can be a blessing or a hardship but in the end it is a lesson. If you are anything like me I often wounder when the lessons are over, until I learn what I have not and then understand why I learned it and it was all worth it. As we become sick or our loved ones do and live with it daily it is harder on us and the ones that live with us because there is no escape. As others can say to them self I have had enough or I have more to deal with work, bills, friends, family, school or any other life journeys we/they deal with. One of the problems with the ones that can not escape is that this is our life we live in pain we can not get over it or we watch our loved one suffer daily.</div><div style="margin-bottom: 0in;"><br />
</div><div style="margin-bottom: 0in;"> I have both I live with it and watch my daughter suffer everyday but not just my daughter who is sick my son, my husband and my mother-in-law who lives with us. It effects others but not as much as the ones who live in the house with us. Or Emalee's boyfriend who stands by her at this young age and try’s to be strong when you see how scarred he is for her and how helpless he feels as we all do. As the surgery date gets closer we are blessed to have a doctor who will do surgery but we also know that at 15 years old she will be having brain surgery and at any age it seems unfair let alone a child.</div><div style="margin-bottom: 0in;"><br />
</div><div style="margin-bottom: 0in;"> As a mother I want to scream and cry and try and stop this, as a Chiarian I know this is the best we can be doing for her as the person I am I want to not only help my daughter but change all that have been affected by this disease and any other illness. The one thing I keep going back to as how much I changed in a good way after my surgery and how I found myself. We were brought up to believe be are born in this world alone and die alone and I disagree. We are never alone even when we want to be, we are always with love and support. We make our life journey what we want to make it. We create our own happiness. We have the power to move negativity out of our life and enjoy the beauty in life even when it is sad it can still be beautiful. We don't have to understand all we get to deiced is if we what to except all and there differences and love them. Some you just have to let go and some come into your life when you had no idea you needed them. Life works in all very amazing way, it is up to you and the way you take it in. Please don't get me wrong I am freakin out about Emalee's surgery but I have deiced to take the negative out and replace it with love, peace, happiness, life, sadness and let it just be.</div><div style="margin-bottom: 0in;"><br />
</div><div style="margin-bottom: 0in;">So please just remember you are not alone we are never alone and we understand even when you think your the only there is someone out there who does and they love you but you also don't have to understand to love and support. The ball is always in your court as they say!</div><br />
<div style="margin-bottom: 0in;">I love you with love and support always.</div><br />
<div style="margin-bottom: 0in;"><em>Heather, founder of Zipperheads for Chiari</em>,</div><br />
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</div>Heatherhttp://www.blogger.com/profile/06322896827980743141noreply@blogger.com0tag:blogger.com,1999:blog-4117022934908081512.post-41034865371099729472011-12-21T23:53:00.000-08:002011-12-21T23:53:01.415-08:00What I have learned<div style="margin-bottom: 0in;">To my loving family of Chiarians, friends, loved ones and the ones that are effected by any disease or illness in there life or a loved one, I want to right to you tonight and help you through the cloudiness of confusion. At first it is so important to try and understand why we are sick or why are loved on is sick we forget the person, the self, the life. Every moment we spend on why we are taking away from the now. There is time for the whys and hows - to the illness. It is important to have a self of positive release you must be able to not let it take hold of you like a ship in a storm with no way out. Yes, it is true we feel like this in many ways and we will have our ups and our downs but it is time to make the ups more impressionable in all of our lives. Some may be saying I don't understand, and I may not. I do not live in your life and everyone of us are different, that is the beauty of being human. </div><div style="margin-bottom: 0in;"><br />
</div><div style="margin-bottom: 0in;">I would like to share with you that I am ill and so is my daughter who will be having surgery for her Chiari we think in January. I have also mourned my daughters fathers death and learned many lessons. The biggest one is to release the anger and receive the love. It is hard to be sick and it is hard to watch a love one go through it. Both ways it is hard. Some may hurt us and leave but at this point I have come to find they have done what they have needed to do or we have and we must move to the future. I have taken some time off Zipperheads for Chiari because of my daughter and my health, this was a very hard decision for me to make. It is often hard for me to be silenced and just be. I have always wanted to fix, share, love, help, work, find a answer or make a difference. Not in a way to get a gold star but in a way for me to find my purposes(I'm still trying to find my purposes) and share it with all. So stepping back and letting Zipperheads just be was hard. I know there are new Chiarians and loved ones that are scared I was one of you. What I have found out in my time away is that it does not stop with Chiari it is all illnesses and we all need to be loved and feel we are heard. That is what Zipperheads for Chiari is about. To be loved and supported.</div><div style="margin-bottom: 0in;"><br />
</div><div style="margin-bottom: 0in;"> I have watched the sun rise and the clouds move, the trees blow and the grass grow. I have been give a gift to stop and enjoy a gift I took for granted. I have time to sit with my children and read with them or snuggle up and watch a cartoon I can't stand. But I have the time. I hurt and It is never easy, every day it is hard for me, Emalee and most all Chiarians. One of the most important things I learned after my brain surgery was life is fragile our body’s can be weak but our heart, mind, soul and humanity can be so strong. </div><div style="margin-bottom: 0in;"><br />
</div><div style="margin-bottom: 0in;">So as I look at my self in the mirror, as my daughter at 15 yrs old will be having brain surgery- what do I want to teach her now? What do I want to teach my 9 yr old son who watches his sister and mommy get in the ambulance at less once a month because we are sick. I want to teach him that love and a positive life will(and has for my family)help us make it to the next day. Chiari effects us all differently but the same. It is up to you on how you live your life, I will always support you with love and compassion. Zipperheads is for all we love you so much and are always here if you need us. If you need personal attention my phone # is on our info wall.</div><br />
<div style="margin-bottom: 0in;"><strong>NOTE: This is just my opinion I have no intentions on hurting anyone, if you feel like you need medical help please call 911 or call your doctor. </strong></div><div style="margin-bottom: 0in;"><br />
</div><div style="margin-bottom: 0in;">With all my love- </div><div style="margin-bottom: 0in;"><em>Heather founder of Zipperheads for Chiari.</em></div>Heatherhttp://www.blogger.com/profile/06322896827980743141noreply@blogger.com0tag:blogger.com,1999:blog-4117022934908081512.post-5173441829899204262011-09-29T21:39:00.001-07:002011-09-29T21:39:52.772-07:00The thing we learn and go through as Chiarians<div style="margin-bottom: 0in;">I am 2 years out from surgery and my daughter is going to have surgery for her Chiari so I wright this as a Zipperhead, Chiarian and a mother. First it is the scariest thing to go through and when I say go though it does not stop after surgery. Because there is no cure so we are always waiting to see what will happen next. It is harder and more scary seeing your child go through it, cause you can't take it away. I can not even imagine not having Chiari and my child going through it. And this is why, because we are all different and it is so hard to understand if you do not have Chiari. </div><br />
<div style="margin-bottom: 0in;">The other issue is the relief, guilt we have relief because we are not crazy, scared, sad, disappointed on how we are treated by the ones we are not expecting and the guilt of what we put all are loved ones through. The other one is when we have Chiari and so does our child we feel guilty because no matter what we feel responsible. And some where in all those emotions we are trying to hold on educate and stay strong all at once. Chiari is so hard to explain let alone trying to figure out what it is doing to our bodies as Chiarians. </div><br />
<div style="margin-bottom: 0in;">So with that being said what can we do and learn? Well first, we need to learn about our body. Where is Chiari and what is it, where is it and what is around it. We need to educate our self's on our anatomy. What is a Brain Stem and Vegas Nerve??? What and why do we need Spine fluid. The more we learn the more you will know if you have the best care and you will know if your doctor knows what he is doing. Learn your Spin and brain learn your nerves system. It will help you to be a better advocate for you or the loved one who has Chiari. Also have a medical journal and wright in it every day. </div><br />
<div style="margin-bottom: 0in;">I decided to make Zipperheads for Chiari a positive place because the more negative I am the more sick I am, the more stress I allow myself to go through the more I suffer not others, but me. I can't allow that, as a Mother, wife, sister, friend, Chiarian and a Zipperhead. It is hard and yes I do have bad days “but” the good days and SO good and so worth it. </div><br />
<div style="margin-bottom: 0in;">I have learned with Chiari to be still, listen, have patents, forgive, let go, expect myself and I'm working on trying not to please everyone. I take out of Chiari what I get out of it and not what it has taken from my life. I am not perfect and I do still wish I was better and we all had a cure. I have the days when I want to scream and cry. We all do we are in pain and most of us our broke. But we are not alone. We are never alone and we can always send our love and share our story’s. As a mother I wish my baby did not have it and I want to take it away and I can't and that is the hardest part for me with Chiari. As a Chiarian I am a Chiarian but before that I am me. </div><br />
<div style="margin-bottom: 0in;"><em>For all of you, I send my love and support always. </em></div><em> </em><br />
<div style="margin-bottom: 0in;"><em>You are never alone. <3</em></div><br />
<div style="margin-bottom: 0in;">Heather </div><div style="margin-bottom: 0in;">Founder of Zipperheads for Chiari. </div>Heatherhttp://www.blogger.com/profile/06322896827980743141noreply@blogger.com0