My Chiari Story

So as many of you may now know I am in the process of starting up a new chapter of a Chiari Malformation Support Group in my area.  I am doing so because I am a "Chiarian" as we are often called because I suffer from a brain malformation.  I figured since I am going to start this chapter in my area I would share my story with everyone from start to finish.  It's a long one, so get comfortable and if you are a sufferer please consider commenting, joining one of the online communities I am happy and proud to be a part of ( I am not going to post the links at the end of the blog for privacy reasons but if you would like them, message me) and get involved with others who are going through the same thing. Believe me the support of others makes all the difference in the world.

Well to begin, my name is Jen and I was born in July 1983.  I grew up in a very small town (one I like to call po-dunk USA) population 6 (not really).  I had a lot of friends which looking back I wish I took better care of some of those relationships because as much as I would like to say I was a stand up gal back then I know I wasn't.  But we live and learn and we all go through it.

I was a cheerleader, a band geek, definitely not one of the "smart" kids but not labeled "not-so-smart" (to my knowledge) either.  I was average.  Never the center of attention, never the back of the pack, always in the middle.  That's where I liked it.  High school was blur, college a joke because I went to community college and then a business school where I did graduate with a 4.0 and on the Dean's List but I didn't go to my graduation because I didn't feel like it.  Nice huh?!  But that's who I was, carefree, did what I wanted and didn't have much to say about it.

In 2002 I met a wonderful man through mutual friends named Tom.  I was working at Wal-Mart at the time to help pay for school and have some fun money (not much) and it didn't take long for Tom and I to hit it off and fall for each other.  Within a few years we were engaged and by May 2006 I had a new job and a new husband.  Life was great!

We decided to start a family right away and by September 2006 I was pregnant :)  What a wonderful, and fulfilling point in my life.  But the joyfulness didn't last long.  I was getting such severe headaches, vision and balance changes and unexplained heart palpitations that my OB/GYN sent me to a Neurologist and Cardiologist by my 4th month of pregnancy.  

A magnetic MRI was conducted for my brain and it was determined I had a Chiari Malformation.  A who, what now?!  I never heard of such a thing.  Then of course I went to the Cardiologist and got the news that I had Super Ventricular Tacchycardia (SVT).  Oh great another ailment I knew nothing about and couldn't treat while I was pregnant but one that could make me drop on the spot.  Don't freak out the preggo chick!

I was immediately taken out of work and placed on strict bed rest and the baby was monitored very closely. My blood pressure kept spiking, my potassium kept bottoming out, and I retained more water than the Hoover Dam.  It was a a nightmare.  I ended up with Pre-eclampsia, Toxemia, and if it was pregnancy induced, I got it.  The pregnancy was very rough and I was given a 50/50 chance to make it through the birth so a C-section was scheduled and on June 1, 2007 we welcomed our little girl into the world.

My symptoms of pre-eclampsia disappeared over time but the Chiari and SVT symptoms kept getting worse and worse.  I was warned not to have any more babies as it would be a huge strain on my body, but I don't listen well.  So I took the chance and in 2009 we were pregnant again.

This time the pregnancy went great, no problems I was able to keep up with my daughter right up until the day my son was born.  However, the day he was born was the beginning of the end of all things going well up to that point for this gal's body.

My blood pressure spiked to 240/140 on the day of my 37th week of being pregnant, I was rushed to the hospital and admitted.  I had a boatload of protein in my urine, I became toxic, I had NO potassium or magnesium in my body so they did an emergency C-Section.  Before I went up I was told to call my daughter and say good-bye. It was the worst phone call I ever had to make, and of course I didn't tell her what was going on, she was only 2 at the time.  I just told her I was going to have her baby brother and she told me she loved me and I was so scared I would never see her little face again.

The doctor pulled my mom aside as my husband was racing to the hospital and asked her which one of us she wanted him to save because neither of us (my son or myself) had a chance of surviving.  I had less than 20% and I didn't get the number he gave to her for my little man.  So scared to death in I went to deliver on October 9, 2009 And to this day I have no idea how, but we both survived and my son had no issues at all other than being small.  Thank GOD!

After we were all home and settled I was rushed back into the hospital with high blood pressure again and re-admitted.  All these specialty doctors were called in, and I was told I had to be on Magnesium IV bags to stop my body from seizing because I was so close to stroking out.  Why was my body this?  What weren't they telling me?  

After an extended stay in the hospital and a lengthy stay on my couch I went to work with doctors.  They tested me for EVERYTHING!!!!  It all came back negative.  To this day they don't know what happened. Al they know is it's definitely no more babies for me, because my odds of surviving another pregnancy and birth are slim to none and I will not leave my babies.

So what does all this have to do with Chiari?!  Well I found out I had it because during pregnancy you aren't supposed to have headaches, but the increase in blood that your body produces due to pregnancy created more pressure in my head and neck because I already had a blockage of brain fluid and blood due to my Chiari but that was never discovered until I had a flow study done in 2009.  I could have and probably should have had a stroke with either one or both births.  It's a true miracle that I did not.

I had a Cardiac Ablation in 2010 to cure the SVT but they found I have A-Fib while they were ablating that so now I live with A-Fib.  I had the Chiari Decompression surgery in June 2012 but my symptoms are back with a vengeance so I'm looking into a possible second surgery with my Neurosurgeon. I had an L5-S1 back fusion in January 2013 because my spine is deteriorating and I had massive herniation and nerve damage and although the fusion itself worked to bring my spine back in place I have too much scar tissue around the fusion and my spine is still deteriorating so unfortunately the pain is still with me.  I have some spinal spurs in my neck and I am a class 2-3 for my neck curvature deterioration.  I am looking into being tested for EDS syndrome which thanks to the WONDERFUL online support groups I have just learned about.  I really believe that could be the root of a lot of my pain and problems.

 Day 1 Chiari Surgery

Day 7 Post Op

Day 8 Back Fusion Post Op

This is an abbreviated (believe it or not) version of my story.  I am hoping it will help someone along the way to show that if you are going through something similar or have similar ailments, you are not alone.  There were days I wanted to give up.  I seriously wanted to end it all.  But my children are my life and I went through these surgeries and I am fighting so hard to be as "normal" as possible so I can give my children the best life possible.

I am frustrated that I cannot go to work anymore.  I am allergic to so many medications that I break out head to toe in hives so my pain medication is essentially tylenol (tic tacs) ibuprofen (mentos) and some pain meds that my pain management physician has tried.  But a lot of those I am allergic to also or if I'm not allergic to them they make me spacey and it's difficult to focus.  I can't ask an employer to give me special arrangements because I have ailments, that's not fair to those who don't.  It's also not fair to have to live like this.  But so many of us are and I believe that with the support of others we can fight back against the depression, the anxiety, and the disease itself.  

Sometimes the pain is enough to make you crazy.  You look completely fine on the outside but on the inside you're dying.  People judge you because they have these awful diseases that they are going through and physically they look sick and to them you almost look like you're faking.  It makes me angry and sad because we aren't faking, we aren't lying, we are hurting and we don't wish any pain on anyone we just want the pain to stop for everyone.  

That's why starting this group is so important to me.  My story has a lot of details, the intimate details missing, but you will find that I blog a lot of those when the time is right for me.  Sometimes the days are too much to bear and other times I am just grateful to be on this earth with my kids.  My story is far from over and I am interested in hearing more of my new friends' stories.  I hope that I can support everyone the way you have all supported me.  

From my family to yours, thank you all for listening.  Hugs and prayers to all <3

Chiari Malformation - Dealing with the pain

As most who read my blogs know I was diagnosed with a Chiari Malformation in 2006, I had the decompression surgery in 2012 and although the surgery itself was a success as time presses on my symptoms have been coming back as many "Chiarians" as we are affectionately called have experienced, except once the surgery is done the symptoms come back stronger.  Fantastic.

So if you have a Chiari you know the pain I am talking about, if not well you will not fully comprehend the pain because it really cannot be described.  It's a pressure like no other, a migraine times a thousand, your brain feels like it's on fire, your neck is always in a knot and your spine is always out of alignment and that is on a good day.

It sounds a lot like I'm whining and perhaps I am a bit so I apologize for that.  Moving on.  I have joined a bunch of online forums and online community support groups and I cannot believe how similar the stories are and how much support I feel and how I feel I can support others.  So many men and women who haven't had their surgeries yet and are so scared to do so.  I think back to mine and remember feeling the terror, wondering if I would survive at all, worrying about CSF leaks, all the details....it was so overwhelming.

Now listening to these people I can share my story and actually help to calm them.  What to bring to the hospital what not to worry about.  I know that down the road I'll need another surgery so I ask what to so with the second and third one and how these people handled theirs.  A terrifying thought but none-the-less things I need to ask.

Of course every now and then someone puts up a picture of a lit purple candle to signify someone lost their battle with Chiari.  Although this disease does not have the mortality rate as some other diseases it can take your life just as quickly.  It's a harsh reminder of the reality that is only skin deep.

Not every post on these forums are sad or scary.  Some are happy and light.  One woman posted how she wasn't a "zipperhead" as we are also called because the scar looks like a zipper on the back of your neck if staples are used but in her case her surgeon used glue and dissolving stitches.  I'm excited because it's been a year and a half and my once completely half shaven bald head is now fully grown in and the same length.  My hair dresser just cut it yesterday and for the first time since I had the surgery she didn't have to get out the buzzers or put the other half of my hair up and she said it's finally grown in.  I realize it sounds petty and vain to some people but to walk around for a year with people staring at you wondering what disease you have really eats at your self esteem.  So small victories.

Now it's dealing with the pain.  The constant migraines, neck pain, back pain, vision changes, balance changes, medication changes and all the fun crap that goes along with Chiari that was supposed to be gone for a while but now is back with a vengeance.  Am I going to bitch about it?  Probably, a little bit.  Am I going to break down and cry?  Occasionally.  Will I curl up in a ball and ask why me?  Once or twice I'm sure.  But will I get up and keep going?  You bet your ass I will.  I kicked it's ass once, I'll do it again.

So to all my fellow Chiarians out there, it sucks a lot to have it, it sucks even more to deal with the pain, but we are strong, we are fighters and we can beat it.  My advice is to join some online communities if you haven't already, get involved if you have a support group locally.  If you haven't looked into a Neurosurgeon already, get all the facts and get at least 2 opinions on your case.  It's a hefty decision and you should have all the facts.  Best of luck! <3

Childcare

What is a parent to do when it comes to childcare?  You have children because you have decided at some point that you want to be a parent, which means raising a child from infancy to adulthood and beyond. However in order to do so you need to not only teach them how to be a good person and have good values but also give them necessities like food and clothing, etc. as well as things they want like toys and what not without spoiling them rotten so they become bratty.  Being a parent is without a doubt the most difficult job in the world and by far the most important.

So with such an important job how is one supposed to raise a child and at the same time pay for a child? Let's examine this shall we?  You have a baby, you are overwhelmed with joy and scared out of your mind because you have no idea what the hell you are doing.  Suddenly you have to take care of this little human who is relying on you to keep it alive, no pressure.  Luckily for most your instincts kick in and you figure most things out.  You run on no sleep, no shower, barely any clean clothes and no food for yourself.  That beautiful baby however needs diapers, clothing, formula and those items add up to your grocery bill for yourself for the month.  You start wondering how you are going to make it and how you will pay for childcare which is a whole other ballgame all together.

You somehow make it through and it's time to go back to work.  You find a suitable sitter that you are comfortable with but as per most childcare providers it cost $$$$$.  You realize you are now just working to pay for childcare and pay your car payment.  But you have to work right?!  I mean you have a baby. You start looking for another job to pay the bills, but now who is raising your baby?

This is a common problem that so many people are facing right now and so I decided to blog about it.  I myself have 2 children who are school age but I went through the same thing.  We did things a little differently and had family members watch our kids but it definitely wasn't free and it still wasn't the best option because we didn't have kids for other people to raise them.  

It's a constant battle that so many parents are facing and it can be so overwhelming.  I am absolutely no expert on the subject and to this day we wish we did things differently but I can honestly say if you are stressing over childcare you are not alone.  Talk with some friends or other moms about their childcare options and how they handled or how they are handling their childcare.  Sometimes you find a better option for your family.  You can never be too careful with your kiddos and you always want to do what's best for your family.  

One Great Phone Call

Today I made a phone call, one in which I was very nervous to make.  I called another mother to tell her how her son was picking on my daughter and how I needed her help in making it stop.  I had already emailed her and even though I thought my email was polite I was very nervous to call this woman whom I do not know and talk to her.  I mean who wants to be told by a complete stranger that your child is not being nice to another child.

I was expecting the worst, a cat-fight for sure along with some swearing, definitely a few "F-bombs" but to my happy surprise a very sweet voice answered the phone when I called and we began a very productive conversation.  Within a few seconds this woman on the other end was apologizing up and down for her little boy's behavior.  She began to cry and tell me her story behind her little boy and how he too gets picked on for issues he has and how she has been on the same side I was describing to her so she completely understands and how grateful she was for me for not only telling her about what was going on but more importantly not yelling at her or attacking her son and being understanding of him.

As she sobbed to me she was telling me how she thought I was an excellent mother for bringing this to her attention and how she hoped I didn't think she was terrible for not having a better solution for this particular problem.  I felt myself feeling so bad for this woman as she told me she has been through this so many times. I want this issue fixed but I also want to help this woman to help her child.  I found myself asking her if she would like to get together to talk.  It was a moment of mother to mother trying to do anything to help our children.  I am actually looking so forward to meeting her.  I am hoping that with this new found knowledge and uniting with one another we can help our children better understand each other and get along.

I felt absolutely amazing after our conversation and I think now knowing what I know maybe we can help each other and help our kids together.  I don't want my daughter to get picked on, absolutely not, but I also don't want to see the little boy suffer either.  I wish the world was different but since it isn't, maybe we can help one another out once we get past the barriers.

I learned a valuable lesson today.  And I am so thankful I wrote that email and even more thankful I picked up that phone and she was willing to talk about it.  There is some hope in this world :)

Holiday Cheer

Well tomorrow is Thanksgiving and just like every other year everyone who celebrates is either running around crazy trying to prepare for the upcoming holiday's feast or planning their trip(s) to their selected stores to get this years deals on the biggest shopping day of the year, "black Friday".  Perhaps others are traveling to loved ones houses in a different part of the state or country, and if so, I apologize right now because we all know how much fun airports, bus and train stations can be and of course rush hour on all major high ways the day before a holiday.  So let's break this down a bit shall we?!

First: if you are preparing the meal: it is a royal pain in the ass but let me be the first to tell you, the people who are eating it are beyond appreciative of it or at least they should be.  It is an insane amount of work and it's over in about 20 minutes and then the clean-up takes another hour and a half but those 20 minutes are pure bliss.  For those preparing the meal, you are amazing and thank you for doing so.  I did it last year and unless I absolutely HAVE to, I am so not doing it again anytime soon unless I move into a bigger house with a much bigger kitchen.  For those eating the dinner you did not prepare: do the damn dishes!

Second: if you are planning to go black Friday shopping, do not be one of those people who beats the shit out of someone else over a $5.00 savings on an iPad because in a week it's going to be cheaper somewhere else.  You want a $5.00 savings but if you get arrested now you're going to have to pay for a lawyer, court fees, spend some time in jail, etc.  Now ask yourself is it really worth it?   I think not.  Don't be THAT person.

Third: if you are traveling for the holidays no matter by what mode; plane, train or automobile please be considerate of other people.  There will be delays, there will be traffic and there will be that family with that screaming kid right next to your seat on the plane or train.  There will be no need to say some nasty comment about them or about how the workers are so slow at getting your baggage from point A to point B, remember they are working on the holiday's too.

Above all let's remember that it is the holiday season and for whatever reason instead of being holly and jolly at some time or another we all turn a little grouchy.  You may notice a slight sarcasm in this blog, it's there for a reason. I am hoping that this year we can all turn a little naughty into a little nice.  Maybe if we see someone having a bad day or going through a rough patch we could lend a hand to help out.  A little holiday cheer never hurts :)

Happy Thanksgiving to all :)

Behind Those Eyes

"Every time I see you I look deep into your eyes and it tells me everything I need to know.  You can tell me everything you think I want to hear but your eyes say it all.  They tell your whole story.  You're sad, depressed and undoubtedly lost my dear friend.   

Sometimes I wonder how long you're going to let this charade go on.  When are you going to realize your self worth?  You let yourself get walked on every single day.  And every time you tell yourself "this is the last time I'm going to let this happen" you kick yourself because you said that the last time.  Only you know why you stay.  The way it used to be is no longer the way it is now.  It's so hard to say good-bye but it hurts so much more to hold on to something that has let you go so long ago.  

Its getting harder and harder to hide the hurt.  You're friends are all starting to notice.  You've alienated yourself from everyone.  It's not like they don't want to be there for you, it's that you don't know how to let them be there at this point.  So many have gone already and of the ones who are left, will they understand what you have to say?

Tough call to make on this one.  Maybe it's time to let it all go.  Let all the pain out and let all the hurt go. I'm tired of the way things are.  I'm tired of looking into your eyes and seeing what I see.  I'm tired of the fighting. I don't want to do it anymore.  You don't have control over much, so why not take control of what you can and make it work?!  It just may be time to make yourself happy.  

Can you walk away?  Can you reinvent yourself?  Of course you can!  You just have to put one foot in front of the other and take it one step at a time."  I said to my reflection.  "Maybe someday."

Thankful

With Thanksgiving drawing near there are all sorts of things showing up on social media networks that are asking for lists on "what are you thankful for?"  Some people get really into it and others seems to get really pissed that other people do it.  I could care less either way, but that's just me.  I enjoy reading what other people are thankful for.  It's usually the same sort of things, family, friends, husbands, wives, parents, etc. Lately it's been more materialist but in a funny way; a comfy bed, a fluffy blanket on a cold fall night, things like that.

I usually don't participate in these lists so to speak but they do make me think.  Lately things haven't been going so well for me from a health standpoint (surprise) but that is another story and certainly for another blog.  Anyway, with this season of "Thanks" coming up I have given it some thought and with all the crap that's been going on here's what I have come up with.

In the tradition I am of course thankful for my family and friends.  Without them I wouldn't get through the day.  The fact that I can call upon my besties anytime I need them and know that they will be there even though we haven't talked in a while means the world to me.  I hope they know I will always be there for them as well.  I've always been very fortunate to have a lot of friends but a handful of truly BEST friends.  They know who they are and to them, without you, I would be nothing and I love each and every one of you dearly.

My brother who has been the one stable man in my life since birth will always be my rock.  Even though we may fight every now and again and even though we went through a tough time as kids we make it through everything because we have a relationship that is unlike any other.  We know we can lean upon each other no matter what.  My brother is the absolute best there is and there isn't anything I wouldn't do for him and the same goes for me with him.  When I went in for brain surgery I would not go until I saw him, I had to see his face and he had to tell me it would be ok for me to go in. He is without a question of a doubt the best there is, and I am thankful everyday to call him brother.

My parents as a couple everyone knows is not great but separately they bring their own unique talents.  My father showed me how to stand up for myself so if you ever wonder where I get my attitude and perhaps my mouth, thank him.  We butt heads a lot and perhaps that is why, but I am thankful that I have his hard-headedness.  

My mother is the most wonderful woman on the planet.  She gave up everything she ever had to raise my brother and I.  She showed us how to make something from nothing.  Even though she may have come from "the poor side of the tracks" as some may have called her, she made a wonderful life for us, and ANYONE who knows her knows how wonderful she is.  We also butt heads a lot but I think it's because we are so much alike.  I want to show my children as much love as she has shown me over the years.  She is the best mother anyone could ever ask for.  I hope I make her proud.

I am thankful that I am married to the most wonderful man who puts up my shit.  I am very certain that no one else would.  There are days that we drive each other absolutely crazy and some days I wonder how the hell we ever thought getting married was a good idea.  But, I know in my heart he is the most wonderful man and we were made for each other.  We are perfect for one another.  We call each other out on our bullshit, we make each other laugh, we make each other cry, we get angry, we yell, we smile, and everything in between.  I know that no matter what he will stand by me.  Through sickness and in health which unfortunately I am not blessed with, and through all my issues he has stood by me.  Never once has he looked away.  Never once has he backed down.  He has taken care of me, stepped up to the plate and told me we would get through it, and we have. He is my true love, my soul mate, my destiny.  I love you Tom.

My children is what I am most thankful for.  I always knew I wanted children but I never dreamed that they would be this wonderful.  I know we have our days where we argue and they are fighting all day and I want to pull my hair out....but even those days I wouldn't trade for anything.  

Looking into their eyes and seeing their sparkle, their innocence, their magic makes me realize how lucky I am.  I may not have a fancy house, a lot of money, or a cushy job but I am the richest woman in the world because I have them.  They are healthy and happy and that's all I can ask for.  I pray that they don't have any of my health issues, that they live long, healthy, happy lives.  I pray that I can watch them grow up, get married and have kids of their own.  My biggest fear is that I won't be able to.  I am thankful for the time I've already had with them, and hopeful for the time I will get with them in the future. I am hanging on to that hope and thanking God everyday for my time with them.

I am thankful for every minute with them.  I am thankful that they are here with me now.  I am thankful that they love to believe in Santa, the Tooth Fairy and all the make believe childhood offers because it goes by way too fast.  Once it's gone, it's gone forever and I am thankful I can share it with them now. 

My wishes for them are long and plentiful and I hope that one day they see that what I am doing for them now is all in connection to make all their dreams come true.  I want everything for them, and I will do everything and anything in my power to make sure their lives are perfect for them.  After I am gone I hope they will hold a piece of me with them in their hearts so they can always feel me with them.    

I am thankful for all those who I can share my life with, especially my family and friends.  I am thankful to those are reading this.  You who read this make me happy to blog.  So thank you, and Happy Thanksgiving :)