Nostalgia

Being nostalgic is defined as being characterized by or exhibiting feelings of nostalgia.  Nostalgia is of course defined as a sentimental longing or wistful affection for the past, typically for a period or place with happy personal associations.  Translation: something good happened once upon a time in your life so when you reminisce about it you get all happy and joyful until you realize you're merely daydreaming and then reality slaps you right across the face and says "wake up friend, that was then and this is now."

So why bring this up?  Well every now and again everyone gets sucked into that "remember when?...." phase with a friend or family member and you start going on about "the good old days" and before you know it you're back over a decade ago laughing and joking around.  Then without warning your shoved into reality by a screaming child or a nagging boss.  

Or maybe you hear an old familiar song on the radio from "your generation" (and it pains me to write that phrase) and suddenly you're flashing back to a romantic encounter with that special someone that you swore you'd always be close with.  The song playing in the background, his arms around you, all the right words flowing from his mouth and right into your ear.  It was meant to be, he was your soul mate.  Flash forward a few years, you are no more than a line in a song that he couldn't care less about and you would love nothing more than to take the ball of your heel and jam it into his "manly" parts with more force than a rocket launching into space. Halfway through the song you realize this and have a sudden urge to not only change the station but to throw the radio through the nearest window, watch it fall to the ground and smash into a million pieces.

I spent a great deal of time going through some old photo's and wondering "what the hell was I thinking?!" on numerous topics.  Everything from clothing, to the lack of hairstyles, to who the hell are those people?! However, I have the same core group of the most amazing friends, and we had some incredible times that I will be forever grateful for.  Those are the memories I will always be happy to look back on.  

Everything that I have done, gone through, been a part of, has made me the person I am today. Whether it's good bad or indifferent, I am who I am, and I am grateful for all my experiences. Some people have definitely come and gone and that's to be expected with life.  But as I sat with my dearest friend on my birthday this year sipping some apple moonshine that she had bought for me after a (very) brief taste test I realized that even though there will be times when that ridiculous nostalgic feeling may creep up and I may wonder why this or that happened the way it did, it doesn't really matter.  I have the best people in my life and I am so lucky to have them share my life experiences with.

The power of chiari....

It's been a while since I've written about my chiari, but I get compliments all the time from people when I do or when I listen to other's stories.  So I am writing this for those who have struggled, who are struggling, those who are helping someone overcome their chiari, and everyone in between.

First off, you'll notice that I am not capitalizing the word chiari, being that it is a proper name, it should be according to the "rules" of the Enlgish language.  I however no longer am giving this horrible disease that much distinction or power.  A small and somewhat meaningless action to those who have not suffered from this disease, but if you have, just taking away a smidgen of it's power is worth a celebration.

After I was diagnosed with chiari malformation in 2006 I didn't really think about the toll it would take on my life as I grew older.  Now that I have two small children and have put my body through so much over the last 8 years it has definitely taken quite a chunk out of what was supposed to be the "best" years of my life.

I am supposed to be able to run around (and keep up with) my children.  I am supposed to be able to hike up mountains with my family, to go on adventure walks with other young couples and their kids.  I am supposed to be able to keep up with other people my age and not be drained after trying to clean up my house after my kids.

I am not lazy, I am not having a pity party, but I am also a realist.  I know I am not able to do the things I want to do and it, to be blunt, sucks.  It sucks a lot.  And some days I have myself a little breakdown and a cry fest on my couch apologizing to my kids for being in pain and unable to do the things with them I know they want to do.  Some days are better and I am up moving around a lot better and I can manage the pain a little better and we have a lot more fun on those days obviously.

So, yes I have bad days, yes I have good days.  I take care of my children with all the love and support I can give them and I will always push myself to be the very best for them.  I will never be the person I used to be and that just is what it is.  I have to learn how to forgive myself for that.  The question is how?  Here's a start:

This year I started a CNY chapter for Chiari and EDS sufferers because I feel the best thing we can do is support each other.  I have watched so many purple candles light up Facebook recently and it just breaks my heart each time.  The lit purple candles represent a Chiarian who has lost his/her battle with chiari.   Wether you know the person who passed on personally or not, the common bond of knowing how bad he or she suffered and knowing the amount of fight he or she had to do..... it's wrenching to know that he or she lost the battle, the only comfort is knowing that the pain is over.

The power of chiari is immeasureable.  It takes away so much from those it affects.  Once you are diagnosed, the life you once knew is completely flipped upside down and it will never be the same.  All of the sudden everyone is looking at you different, everyone needs to be tested, people want to start poking you with all sorts of needles, doctors want to touch your brain for Pete's sake!

However, with the power of chiari comes a whole new wave of support from people just like you.  They know exactly what you're going through and they will help you through everything you are going through every step of the way.  You are not alone.  The best thing we can do for one another is support each other. We need to get the awareness out to our communities and let those who are silently suffering know that we are here for one another.  We need to show our physician's that we need the support from them as well.  We aren't just a name/number on a chart.  We are real people with a real disease and just because we may not LOOK sick on the outside, our pain and suffering is very much real.

The pain, sadness, hurt and anger will always come and go.  It is something that will never go away.  I will not say that I don't face those demons every single day.  However, I will not give my chiari any more power over me than it already has.  I am taking back my life and using the negative from it and turning it into something positive.  If you are suffering from it or know someone who is, please know, you are NOT alone.

Losing Battle

"Chose your battles wisely" or so the saying goes, but lately it seems as though the battles are not my choice and I'm not on the winning side.  Everyone has their things they go through on a daily basis, some more severe than others.  Who is anyone to judge anyone else on what they are going through or how they should feel about it.  I know people mean well when they try to make others feel better but if I hear one more preaching sermon from Joe Blow I may just slap someone.  Sometimes I just want to be able to go through the emotions of what I'm going through and let that be ok. 

It's been a few years coming and I knew that I would have to face it eventually but I guess I felt that if I didn't face it right then or really at all, I wouldn't have to do it.  And part of me feels selfish because I have 2 amazing children and there are families out there who can't have their own children and they would do anything to be able to do so and I've already been able to do so.  Although having them didn't come without almost losing my own life, but don't think for a second I wouldn't do it all over again because I would. I would do anything for my children, anything at all.

I always thought I would have one more.  But that is just one battle I am not going to win.  All my doctors have agreed I wouldn't survive another pregnancy or delivery and I can't risk leaving my kids behind.  So I went to the doctor yesterday and I got the call today that the surgery has been scheduled for 2 weeks from tomorrow.  It's official that one chapter of my life is closing and I need to move on to the next one.

In one way I suppose it's something very positive.  It's one more way I can cement trying to be here for my kids as long as possible.  And now that they are getting older we can take those fun family vacations now that they are more independent.  With the two of them I only need to divide my attention between them which is easier than with more children.

In another way, as a woman being able to create a life and have it live inside you for almost a year and have that bond with you is something I just am not ready to give up.  For someone else to make that decision for you just sucks.  For other people to tell you that this is what you have to do instead of you decided your family is complete sort of leaves a void.  I have a wonderful family but it's hard to explain to my children when they ask me why we don't have a baby or why they can't have a baby brother or sister.  To tell them mommy can't and have them ask why not is something they don't understand and I don't go into so I avoid it as much as possible.  Luckily they are easily distracted by something more fun to do or to talk about.  

Please don't misunderstand I am more than happy with my family.  I wouldn't want to change a thing.  I am more depressed that someone else gets to decide when my family is complete, when my body has had enough.  I've fought this battle for so long and so it seems I've lost.  I suppose it's on to the next one....

The Inevitable

I try really hard not to be pessimistic about my health conditions and although I know that humor won't make any of them go away it's definitely something I use to lighten the mood that surrounds the never-ending wake of bad news that follows with each and every doctor appointment, phone call, "episode", etc.

My family and friends ask me all the time (bless their hearts) how I am doing, how I am feeling and if they can do anything to help.  My answer is always the same and always surrounded by some sort of smart-ass comment.  We laugh it off and I always try to revert the conversation to a different topic.  What many of them have figured out by now is that right beneath the surface of my not-so-detailed answer to their question is my massive meltdown filled with anger, pain and resentment that is rapidly rising to the surface.

With each new day comes new trials and tribulations and while each and every one of us has to face them we all take a very different approach in doing so.  But at some point when things get just too much to bear we lose it.  I can honestly say I've hit that point only a few times given my diagnosis's.  The hardest part is that with each new symptom, each new issue, the "I don't know" result from each physician and the inevitable outcome is the hardest pill to swallow.  We all have to face facts that at some point in life our bodies will fail and we have to except our fate.  It's the ride we must take to get there that I'm having the issue with.

Over the last few years I have been through some pretty craptastical health issues as have most people, but the whole purpose of going through all of them was so that I could be around for my children.  I want to raise them, watch them grow into wonderful, healthy, happy adults, be there for them throughout all of their lives. Cheer them on as they play sports, hold them when their first love hurts their feelings, tell them how proud of them they are on the day they graduate, dance with them at their wedding's, help them along as they have children of their own...do all the things a parent gets to do.

Last night after yet another awful "in-explainable" yet "troublesome" issue occurred I laid with my son to hold him as he drifted off to sleep.  Right before he drifted off he turned to me and pulled my arms around him and whispered "hold me mommy, I don't like it when I can't feel you". I buried my head into his back and told him "I will always be here."  But as he drifted off to sleep I sat there and cried because I can't keep that promise.  What if I'm not there for him?  I have no control over what's going on inside my body and at this point my physician's can't figure it out so really it's just a guessing game.  I know what I have already diagnosed but there are so many other underlying possibilities it's unreal.

And what about my kids?  Did I pass these awful things onto them?  It's just so unfair.  I would take everything a million times over as long as they don't have to have one ounce of this.  I wouldn't wish any of these things on my worst enemy, let alone my very reasons for being.

I realize this is a pity party, but today is just that kind of day.  I know that there are people out there who are far worse off than I am, and to those people I can't imagine how you do it.  I don't need, want nor am I looking for sympathy with this blog, this is just a way for me to get out some of my feelings.  I always get so many compliments on how strong I am, but really it just depends on the day. Some are better than others as you can tell.

I hope for the best for all but I'm realistic as well.  I supposed I could end this is on a lighter note since this is definitely NOT one of my more favorable blogs....the snow has stopped here in good old NY and I'm guessing every school that has closed is probably really pissed right about now.  Happy snow day to all the kids out there if you have one today :)

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.