Two words: Bad at math (Hearing loss and what they have in common)

More of the story unfolds.

Sorry, no goofy pictures of Prince or other 80's or 90's references in this one. Just good old fashioned story here.

I mentioned church in my last blog. And it's something I struggled with in the past.  But last Easter I was optimistic because Randy and I picked a church and took our little guy to his first church service.  He was decked out in a cute Easter outfit (Brock - not Randy) and joined us for a contemporary service.

I was a little emotional to be back, but happy to have tried.  It just didn't feel right.  Maybe it wasn't the right fit.  I wasn't sure.  But I thought there might be another church to try again in the future.

Another flash forward.

Around the first or second Sunday in September 2014, right after I had to stop working because my seizures had gotten crazy and my life impossible, I decided it was time to ask for divine help.  Plus, my mom was a church goer, she was staying with us and she really wanted to go.  The year before we went to a craft fair at this beautiful church around the corner right before Brock was born where we visited a friend from an old Y I worked at.  We thought it was a good place to start.

We walked in and we were greeted very kindly.  A woman met us at the door. I was looking very weak and very pale at this point. She took very good care of me and asked if there was anything we needed. I explained that I was extremely sensitive to sounds, and that unfortunately sounds triggered seizures. That I had just found out that I have epilepsy but we wanted to try church anyway.  Her face went blank.  "My husband has seizures.  He's the pastor here, she pointed up to the stage, she said she would do whatever it took to help me and my family stay and be comfortable.  She pointed towards a family room where we could sit and that she would monitor the volume.

I was very grateful and thought that it was a very odd coincidence. She explained more of her husband's story and the surgery that had resolved his problem.  I noticed the scar he had on his head and later researched it to see if it was my problem too - (thanks Web MD!) but it was not. And we were grateful and sat quietly and hoped a seizure was not going to be triggered by the loud music.

So...

We got through the first song.  And part of the second...and then I started to feel a tingle in my legs.  But at this point I had been carrying around ear plugs with me.  I noticed that this helped in the past when I was at the movie theater, even though it didn't stop the seizure there, it delayed it.  So, I always carried a pair with me.  I grabbed the ear plugs and put them in, even I was getting annoyed with myself - having to leave places because I wasn't feeling right or feeling my" seizure spidey senses tingling." Like a backwards superhero.

So I didn't want to force everyone to leave.  And then I was sure. Very sure it was going to happen.  And what does everyone do when they see a seizure - ugh! They call an ambulance...and I had been through this over and over and over. Blah.  So I usually I hide when I know it's going to happen and I really prefer to be in the comfort of my own home, whether that meant my bed or my couch or my floor.

I pulled the ear plugs out and then told my mom and husband we had to go, they knew by the look on my face that we had to move. So we booked it to the car.  The woman came after us hoping that she could still help, but it was way too late.  I got into the car and that's when I noticed, I must have pushed wax up into my left ear because I couldn't hear. Or I must have damaged my ear drum.

I had a seizure.

I don't remember where, I don't remember how bad it was. I don't remember anything else about it. There were so many at the time, it doesn't really matter.  But the next day my ear was still bothering me. I felt like I had an infection or something but it didn't hurt.  I had an appointment scheduled for my primary doctor that Friday to help piece some of this crazy together anyway, so I figured I would just talk to her about it then.

Friday came. I spoke to the doctor about everything, the tremors, the seizures, everything that had been going on, I didn't want my life in shambles! I thought she might help me put this whole puzzle together and have some ideas as to how to stop all of this craziness from happening.  She was sympathetic, but no ideas.  And the last bomb I dropped on her, was the ear.  I thought it was an after thought...like a little cherry on top of a mound of a pile a trash.  She took a look.  She said it looked pretty normal.  There was a little bit of cloudiness so she said to wait it out because whatever was going on was healing itself.

Phew!

Ok, worrying over. Doc said it was okay.  Hearing will come back. A little inflammation, a little cloudy.  Just wait.  But another week went by, and nothing happened.  No hearing returned. I called my primary care doctor again but she was on vacation so I thought, I don't want to wait if it's an infection, I need to get it under control.  So I went to the Walgreen's immediate care.

The doctor there was very nice and listened to my entire long long story (as you are beginning to uncover).  She said that my ear looked perfect. She looked like she wanted to cry.  She said, I'll write you two prescriptions, one is drops, the other are steroids, but if they do not work in 5 days you should call an ENT right away. She placed her hand on my knee and said in a very kind voice, "I don't want to scare you, but you've had a lot of neurological things going on, you may need to prepare yourself that something has happened to your ear."

Crap, What does that mean? Ok, well, I have meds, so surely that will do the trick, finally someone gave me something to clear up this infection.  The last time I had swimmer's ear with an ear I got some drops and it cleared up an infection in 2 days!  Things were looking up and I was going to rest easy.

Day 1 - no change.  Day 2 - no change. Day 3 - no change.

Ok, I wasn't patient enough to wait the full 5 days. I called the ENT and made an appointment right away.  I explained my situation over the phone and they got me in the next day.  I was on some terrible medication at the time. And I had to go to all of these appointments alone because whoever drove me had to wait in the car with the baby.  So I was facing all of these potentially devastating conversations alone.

First step, check ear drums.  I was sure it was ruptured.  Nope.  Both were functioning perfect. Ok.

Next step, hearing test.  Listen for beeps.  Raise hand. Felt pretty good about that too, thought I could hear some beeps in both ears.  Not too worried, maybe this was something that could be fixed pretty easily.

Next step, recognize some words without reading lips.  Right ear first.  Balloon, Hotdog, Birthday.  Easy enough.

Left ear.  Shhhhhhhhhhhhhhhhh

I looked at the Audiologist with a blank stare. I shook my head.  She tried one more time.  I shook my head again and I started to cry.  She looked like she was going to cry too.

She walked me into the doctor's room.  He cleaned out my right ear in hopes to help me hear better out of my that ear and explained that I had no usable hearing in my left ear.  He said there were a couple of possibilities.  He said the one he hoped it was is something called an Acoustic Neuroma.  It could also be causing my seizures.  It's a series of tumors in your ear canal.

SWEET!!!  Blast those tumors!!!!  That's got to be it!!!!!  Nice!!!!!

What's the treatment Doc?

Well first we need to do an MRI.

Oh crap.

But we can put you under.

Cool, I'm excited again.

But before we could get started 4 days later I woke up with a dampening in my right ear. I made another appointment at the doctor and lost 20% of the hearing in my right ear.  Something was happening and I was hoping the doctor could diagnose me quickly.

I won't bore you with the details of the test because you already know that it wasn't the answer. I didn't have it, and to quote Arnold, "It's not a tumor." and we moved on.

I was moved right on to someone called an Inner Ear Specialist.  I didn't even know they existed. At this point I was drugged up on that pretty terrible medication. And I was still looking for answers.  Now I was hoping this new doctor would at least help me to understand why I've lost most of the hearing in my left ear and why my right ear was getting funky.

The appointment was odd. I was in a sea of people in white coats moving about and everyone there acted as though I should know what was going on.  Maybe I should have done the research, maybe I was over medicated...don't know.

It was my turn to see a nurse.  Blah blah blah blah, stick something in my ear and sit and wait.  Then after a while, they took me into a room and this is how the conversation went...

"We've reviewed your medical record and we know you are on a lot of medication for your seizures but frankly you look like a drug addict.  Is there someone here with you?  Are you okay to move forward?"

"Move forward with what?  My mom is outside with my baby, that is why she cannot come in, I have a ride, I just have epilepsy so I cannot drive. I'm okay, just on meds, I'm tired."

The nurse went through some kind of procedure, blah blah, numbing, blah blah 4 weeks, blah blah hearing restored.

Ok sign here.

OK, I signed.

I was instructed to wait in the chair for my name to be called and then make 3 more appointments for on the same day for 3 consecutive weeks.

"Barbara."

I got up, went into the room, sat down and then I understood. I saw the needle.  They explained that I was going to get steroid injections in my ear, through my ear drums 4 times.  They hoped this would restore my hearing.  They said it wouldn't hurt, that they put lidocaine on the outside of my ear.  They also said I wouldn't experience any results for 8 weeks.

Ok.  Well, if you say it doesn't hurt.

Lie.  Terrible, Horrible. Dirty. Awful. Disgusting. Lie.

Plus, I was so drugged up, I didn't read the fine print.  The statistics on getting my hearing back weren't very good, and I was still going to get 3 more shots.  How was I going to get through this?  The pain lasted for hours.  I wish in my state, I had been better at math because I never would have agreed if I realized that 50% of people saw an increase of hearing of about 20-55%.  Those are not very good odds for the pain I was going through considering the rest of the pain I was already going through!!

So, did it work? I don't know.  I haven't had a hearing test.  But they are subjective right, so I should probably be able to tell you.  No.  It didn't work.  I have no hearing in my left ear. But I don't think I've lost anymore in my right ear.  And that is some really good news. Because I've really got to hand it to my right ear, it's working overtime and doing a really good job.

So what happened?  It's kind of like the podcast Serial...we've got all the clues and all of these facts and images and everyone has their story but we won't every really know.

There are three theories about what happened.

1. The hearing loss is completely unrelated to any of the other factors that happened during the time I got sick. - SURE.

2. I had some kind of nerve damage - again unrelated to the epilepsy or seizures I was experiencing.

3. I could have torn a membrane in my ear or ears which allowed some of the fluid in my inner ear to drain causing a great deal of hearing loss in my left ear and some in my right.  (this theory is not able to be proven, I've already asked)


So where does that leave me?  I keep hoping that some of the hearing comes back...I'll test with my ipod on a given day and pull out my right ear bud when a song comes on that I don't know the words to just to see if I can make out the words. I can still hear some things out of that ear. Doctors just refer to it as "no usable" hearing because it's not helpful in anyway.

I'll still go for the test to see what they say, maybe there's some that's returned.  That would be great.  But I can't hear the tv very well and people have to stand on my right side to talk to me and it scared me for sure.  But I'm okay. I added it to the checklist of things I've lost because of getting sick, but as I've been writing and discovering, the things I've been gaining has been growing too.

Plus, I hear that when a superhero loses one of his/her senses one of the other senses become much stronger!

Generosity may come easy but feeling worthy of love can be difficult

With friends and loved ones, I've usually been generous with my effort, resources, skills and money.  Not usually my time, especially as I was working my way up the ladder.

Many times I've said to friends who were struggling with issues (especially poor retail service), "Here, hand me the phone, I'll take care of this for you." But when it came time to speak up for myself, I fell short.  I would back down. (I realize this is a pretty weak example but I think you're following me.) I'll easily stick up for others, but not myself.

In my adult years, coming into my own, I've been comfortable with picking up the check at the end of a meal with friends, but always felt awkward if they offered.  I'd at least try to make them split it.  I'd argue with them, do the "check dance," probably longer than I should, and have difficulty accepting their generosity.

I've been like this in other relationships too. I've felt unworthy of friendships.  I've even said this aloud to a couple of them.  I've judged myself because I've put them on pedestals so far above me that made it impossible for me to feel as though I deserved their friendship or their love.

This issue has even complicated my relationship with God. I have never really felt worthy of God's love. I've never really felt as though I was good enough or deserving enough to go to church. 

And I was always amazed by everything I had and felt it must be due to be luck. I was certain it wasn't based on any of my hard work and that I should count my blessings because it could be gone in an instant. There's no way I could attribute these things to myself...

I have often felt unworthy.

This has been made life difficult in many ways.  

It took terrible seizures and really bad side effects from medication in order for me to change my unhealthy diet and invest in eating in a healthier way.  It took terrible illness in order for me to get decent sleep each night and rest my body.  I don't know why it took epilepsy to make me take a look at the stress, and the whole picture of even just the basics of the way I was living. It took losing control in order to gain some healthy habits. 

Was I living in a way that was good for me?  Or was I just living in auto-pilot? (Sounds like I'm a wannabe Carrie from Sex and the City, but I really don't know. I honestly don't know the answer to those questions, lol.)

I loved my job. I love my family. I love all of the things I worked for.  And I am owning my journey here. So, I hope I don't sound ungrateful at all!  But once I was forced to stop and take care of me, I realized I had never done that before!  And having a baby had only made that worse because that's someone else to take care of, it's a distraction from investing in yourself when you didn't know how to  do it in the first place.

Christmas is passed and it's almost a new year, and I'm going to turn this whole thing around, because that's just the kind of girl that I am :)

I've been struggling with feeling worthy through life, through being sick, through everything. And I won't say I'm done with it.  But a few things have happened recently that have recently made me stop and consider whether or not I am worthy.

Here's the first reason:

Friends

They seem to be coming out of the woodwork.  With messages and kindness and visits and cards. There's too many to thank - or I'd list you all here.


I feel rich and warm and cared for and lucky.  And I didn't ask for any of it and I didn't do anything to deserve it, they have just offered it.  And that's the other thing, the offers-for help, for rides, for conversations, for parties. There aren't any expectations for returns, no questions about money for gas, no favors asked for in return, no hope for anything in exchange.  Just kindness headed in my direction, for my family, gifts for Brock.  It's a wonderful life and it's mine.

Here's the second reason:

A Random Act of Kindness

Someone dropped a gift off for my family on Christmas Eve.  I don't want to go into too much detail because I don't want to distract from the meaning of the gift. What I will tell you is to read a book, it's a New York Times Best Seller, it's called The Christmas Jar.  The book will give you the explanation if you are really interested. Our family plans to pay the gift forward to another family in the future.

What's important about the gift isn't what's tangible, it's that it was given. To us, for someone to make us feel worthy, cared for and loved.  I ran outside once I saw the gift to instantly return it to the gift giver.  I felt like there had to be someone else more deserving, maybe someone who needed it more, wanted it more, had a situation more serious than mine. And I realized that it would have been a mistake to do that. I think I understand better how important it is to be able to receive love as much as it is to be able to be generous.

I'm so extremely grateful for this lesson. I wish it hadn't taken me this long to understand, (but it could have taken a lot longer.)  I hope I don't forget. I guess I'll have this documented as a reminder of life lessons to turn to when I return back to an ordinarily healthy life so that I can remind myself what life is like when you have so much time to think and sort out so many thoughts and find lessons in the midst of a house in the suburbs with no place to go, a 1 year old, at&t cable, hulu, amazon prime, and some books to read. Until then, I'll keep searching for meaning...

Our 2014

A free slideshow by Smilebox

A few other pieces of my story and why my Hero is a three letter word

On to a bit more of my story, once again, totally out of order.  Flashing forward.

So, after the diagnosis, I began to have several seizures daily.  They weren't cute.  They were really bad.  At this point I was at home. I was drugged up really, really badly...like zombie badly and I got some exciting news that my little brother was going to make the long flight out and see me all the way from Japan.

Pretty sweet news for this zombie-hazed epileptic chick. I hadn't seen him since my wedding 2 years ago - I think.  But I was a little concerned for him to see me like this.  I was hitting the ground or the couch or the car seat (passenger) or the floor hard these days. And life was not very pretty, I can only imagine how terrifying it had to be to be one of the bystanders watching what I was experiencing.  I was kind of afraid for him to see exactly how bad it was.  But I really really wanted the company and I was so excited to see him that I didn't care. It was a simple choice.

He arrived.  And the rest is a little hazy.  He stayed for a bit, and it was around the time of my birthday (end of August if you want to buy me a gift next year) because my dad also came and surprised me for a few days.  And it would have been pretty exciting if I
weren't a zombie having 5-7 seizures a day and a side show freak having all of these seizures in front of everyone. My brother held his composure pretty well  because I was really struggling with my medication and sleep. I remember waking him up around 4AM and asking him to take me to hot yoga (???your guess is as good as mine!)  He would patiently say no and try to explain to me why that is not a good idea, not to mention that it's not open :) LOL

My family rallied.  Totally.  And they cried, or at least my mom did. And they had no idea what the heck to do because none of them live anywhere near me. My older brother called, he was ending one job and starting a new one and he was in the same boat as the rest. Eventually, one by one, they were all going to have to go home.

 First, my dad had to go. He was working part time at the church in SC and at the New Hope Center and he was also building a "small shed" (total joke) - it's a very large building. For some reason he was building this rather large building with his 80 year old father in the August heat in South Carolina. He had to hurry back, so that we could all worry about him and Grandpa!

My brother had to go because he had recently left the air force (on good terms) and was figuring out next steps for his family. It's a big move for them and he had some time to think and relax while watching his sister torn apart by a neurological illness, I'm sure it was very restful :) So he had to eventually return back to Japan and get back to his own reality and try to make some life altering decisions of his own.

My mom had to prepare, because my brother had made the decision that he was returning to the states and needed a home base with my folks in order to plot his next move. He was planning to bring his lovely wife, and 2 year old son to my parents home.  And my mom had her work cut out for her to make the house livable for them.  Plus she had been a visitor in my home during a very stressful time for our family and frankly without saying too much she needed to give us a little time to adjust. And I also think she needed a little break. My mom had been traveling back and forth from South Carolina helping out quite a few times at this point. And even though I know she wanted to be there I think it was becoming difficult. Plus she knew she'd be coming back and that she'd continue to be a caregiver as often as she could. But she was also still helping to take care of her 100 year old mother. There were a lot of things in the mix, and although my health and life were falling apart there were a ton of variables here to consider. I sound like I'm qualifying, but I'm not.

All of my family stepped up in a major way. They all helped out and pitched in during the worst time. And they all sacrificed during the most difficult time. Which is what you do for family. May not seem to be too remarkable for some, may seem incredible to others, I guess it depends on how you are raised. But I love them and I appreciate all they were able to do for me.

So yes, they are all heroes in my book. And there are more that I will get to specifically: my mother in law, my brother Scotty and my best friends - and some staff from my past and one in particular from my last Y that really tried to stay connected. I'll go into detail later.

So, I'm going to try to get through the 2nd half of my title without crying. But I'm pretty sure I can't.  Because, I'm going to talk about the silent hero.  And why my hero is a 3 letter word.  You see, there has been someone there through all of it. Someone who couldn't escape.  Someone who learned to look for the signs and someone who has never-ever left my side no matter how bad things got.  I'm guessing a lot of you are thinking -

"Barb -Barbara - Bev 

(even though that name was retired) 

she's  religious she going to say God - that's three letters and He's been there all along."  You are close...very good. I cannot deny that God has been there. That is true.

You'd be close.

But close only counts in horseshoes and hand grenades.  I actually have no idea which older - eh -mature person told me that phrase.

Dog. Dog is my answer.  Specifically my dog Chance.

You see, about the time, this all began, Chance paid very close attention to everything that was going on.  He learned my behavior before, during and after every seizure.  He learned what I did when I felt an aura - remember that's the sensation you feel before the seizure.  He's actually sat on my legs when they've started to tingle to see if they were shaking to know if he should go get someone if I was having a seizure. (If someone was home.) My mom could tell what he was trying to do.  To this day I have no idea how he knew my legs were tingling.

He doesn't leave my side if I am not feeling well, he finds me, he lays his head on my legs and looks up at me.  His eyes always say that he wishes he could make me feel better.  He is the most loyal friend I have ever had.  Often he's sleeping (he's still a dog!) and will wake up and come to me right before I have a seizure.  He is absolutely incredible!

Chance is my hero!  He is my friend. He is loyal and kind and I think he has seen more of my suffering than any other living creature. I think he has soaked up my some of my sadness like a sponge.  He is a remarkable friend.  He is part of my family. I absolutely love and adore him. I would be lost without him. Anyone who has ever said, "It's just a dog," has never experienced anything like this, and has never known the love or loyalty or a dog. Someone once told me dogs know the perfect love, they have no ego, they only know unconditional love. His sweet dedication just pulls at my heartstrings and there are days I don't know how I could have gone on without him.

So Chance, until I teach you to read, (I know we've been working on talking) I'll just have to give you an extra bone until you can read this dedication.


You'll never know how much you've meant to me, that's the hardest part.  And one day when you leave us, hopefully far into the future, there will never be another one like you. For the rest of my days I promise that you will hold a very special place in my heart. You are Randy and my first pal together, your Brock's first dog, my seizure detector, you are my friend in isolation and my special hero,

Ok cue the ridiculous love fest picture montage!!

 MERRY CHRISTMAS!

HOPE IT'S A Wonderful Holiday full of family time and joy!

Wishing everyone simple happiness and health!

The very best and the very worst.

Like I said, I am not one to give up hope on myself.  And I won't say that I haven't censored myself - because I totally committed blog fraud and wrote a couple of very intense and very angry blogs and deleted them. 

But those blogs...well...

They really didn't do anyone any good.

I didn't really mean much of what I said.

And...

I'm not sure that I'm really in the best frame of mind to be calling anyone out on anything.

That being said, if you are reading this and you think I am talking to you...then shame on you! hahaha, but it's probably not you so, disregard.

Recently a friend posted something on her Facebook.  You are probably thinking at this point that I really need to get a life and all I ever do is talk about is Facebook, my kid, my husband, my dog, or my illness.  Yeah...pretty much, my world is small, sort of the point of having an outlet :-)  So, yeah. But you're reading it, so I've gotten you this far.

Anyway - this particular quote was so dead on for my life I had to tell her right away.  Here goes,

 

"There isn't a person you wouldn't love if you could read their story."

Damn. (Sorry Mom.) That sums it up doesn't it?

Crap.

This lesson has been right in front of my ignorant face this whole time.  I've been so blind. And I think I've been trying to see it, but at the same time I've been ignoring it.

OK let's go back...way back.

You see, there's this thing.  It is sometimes part of EPILEPSY, I put it in all caps because it's bold and it's such a huge part of the story, and I just kind of felt like using caps and it's my blog. So don't judge me, okay?

Ok, back to this thing.  Let's call it, an "epileptic break."  I'm not 100% it's a real term, but based on 2 neurologists and several people in my support group it is definitely a real thing.

Ok, I'm getting to the point, I promise...hang in there with me.  I think it started a few years ago.  Anxiety started to build.  I was also making some pretty significant changes in my life, but my personality was starting to change. I was going through some messy stuff too - someone was stalking me and unrequited love and friendship issues and boy drama. But the stalking issue was the only drama out of the ordinary. (the stalking issue is a story for another day.)

I think it may have been the stress trigger.  From there, the anxiety started to really build.  And I don't think it stopped.  It kept building through being in weddings, it kept building through job changes, moves, my own wedding, it kept building through a new job in Plainfield and it got worse once I had a baby, I was juggling breast feeding, a stressful job, a husband going back to work and finding a day care.  My personality was no longer recognizable.  Some friends and family described it as angry, some as plain old stressed, some as anxious.  I received a ton of unsolicited advice. Everything from getting babysitters, to having more "private time" with my husband,but none of it worked. And there was a reason that none of it was working and I could never come down from the craziness of the anxiety.  The doctors explained that my brain was building up the electrical charge that would be my first seizure.  Apparently nothing had caused it but  my epileptic break was about to occur.  It was not postpartum, like I thought, it was not depression, EPILEPSY was preparing to reveal it's ugly head. And I was going to piss off a lot of people before it did.

The sad thing is, I'm pretty sure I was a bad friend, an angry person, an anxious person and that sucks right before you need a lot of support from people.  And it's really hard for people to understand when you had no choice but to act that way.  You had an illness, it wasn't you.  But at this point it's too late to even explain.  You've lost your job, you've lost your friends.  And now, after the fact, people have paid you a lot of lip service about being there and now they don't call, they don't write, they don't care.  And it feels like it's your fault, but it was out of your hands.  It just feels tragic.  That's the worst of things.

But, let's go back to the quote, I told you...I am getting there.

Here's the good news.  Once you have the epileptic break it's almost like immediate relief once you get on some real medication. You become more like yourself.  Wooo!  And there's a calm that has come over me that I haven't had in a really long time.  It's like I can breathe again.  The problem is convincing other people that you've changed when EPILEPSY has controlled your behavior for a while.  Plus some of it has made some odd behavioral changes that are kinda difficult to break, but those can change in time too.

The very best part, is that now I can be a better version of myself.  There's no more feeling that terrible.  Now - a disclaimer - that definitely does NOT mean I am not going through the stages of grief of having this diagnosis or losing my job, losing some friends, having depression etc etc. But I can make strides that I haven't been able to make before.  I can TRY.  And I can be a better friend.  I can listen without being anxious. I wasn't able to do that in the past. Now I just want to invest in really good friendships.

I can listen to everyone's story and take the time. I think I ruled people out in the past because I didn't have time, I made quick judgement because I didn't want to take the time to figure out where they were coming from, I didn't want to "read their story." Now, it seems I cannot get enough. I want to hear all of it from everyone. I want to be a story collector, I want to share in all of the successes and hear all about the triumphs, I want to know about the pain and share in the pain.

There is something about pain.  It's like a universal language. When you've had pain and other's know you have pain, you become a magnet to their story of pain.  It seems like sharing pain makes it hurt just a little bit less, it's like having someone clean your wound, it doesn't heal it, but it helps it heal just a little bit more and maybe just a little bit faster.

Tonight was a good night.  I was with friends. I was with my family and for a little bit, I laughed.  I forgot I lost my job and I forgot I was sick. It may have been only a few minutes but that's the best I can do right now. And it felt really good.

The rest of the beginning...

Happy Hump Day.

If you read anything about my post regarding Thanksgiving and the turkeys, my Dad's non profit does have turkeys for Christmas so that's awesome. Something positive to start the day with right?  They are getting them right now.  I'll post on Facebook too!

So let's go back to the edger and my story, shall we?  Again, that was at the very end of July at that time I was still at the Y and working, (so much has changed.)  Thinking nothing of the shaking I headed into a meeting the next day. It was a standard Tuesday meeting, nothing too special.  We began to talk about a project and my arm started to shake uncontrollably.  I was embarrassed.  It was so bad actually that I started to moved it under the table so that no one would see it.  I tried to stop it with my hand but it wouldn't stop shaking.  And then something weird-er (is that a word?..yeah?) happened.  My leg shook a little too, and then everything on the left side went numb and my face tingled and went numb and my lips went numb.  And the whole room looked weird and odd and I felt like I was in a dream.  I thought that maybe I was having a heart attack or something.  But I felt no pain.

At a certain point others were noticing and I think I made it through most of the meeting (if not all, because I am just a moron like that) I looked at my boss and said something weird like, "I think something neurological is happening." And in her caring TKOB fashion said, "Go! Take care of you, go to the hospital,"  So I decided it made sense to drive myself to urgent care, IDIOT!

I called my mom, who was with the baby, and told her what was going on, she said I should probably go to the hospital, but I said I'll check in with urgent care.  Yeah urgent care wouldn't even take me, they said that I might be having a heart attack, so they told me to go to the hospital. Oddly, no one called me an ambulance at this point. So...I drove myself home (I know I'm still scared typing this) and decided I should change my clothes and then checked myself into the ER all by myself. I did call my husband on the way (he was in his first or second week of work).

My arm began to shake again.  I was all by myself and terrified. I thought, what if I am having a heart attack, what if I am having a stroke and I'm all alone.  I got checked in and began to cry.  They didn't waste any time and ran a bunch of tests.  They diagnosed me with some kind of shaking disorder. They wanted me to stay the night but I was fielding emails from work in my hospital bed and I didn't want to miss work - IDIOT! So I told the doctor that as long as I get in to see a neurologist the very next day would he let me go?  He agreed.

I saw a neuro the very next day, I thought to myself, what service! LOL.  And he ordered an EEG and MRI right away. I was able to get in for the EEG (that thing from Ghostbusters that the keymaster wears with all of the wires - not exactly as pictured above - I have a little more hair.)  I completed that test and didn't know any results just yet.

The following Wednesday my neuro scheduled my MRI. I had never had one, so I had no idea what to expect. I scheduled it near to the end of my workday so that I didn't need to miss any work.  He wanted to see results with and without contrast.  In case you've never had an MRI with contrast means that they put ink in your body to see if there are any extra masses or things that shouldn't be there - just in case that's what's causing all of the commotion.  He said he was looking for anything from nothing to epilepsy to MS.  So he needed all of these workups.  I just went along - what else could I do?

I proceed to a special MRI center, I filled out a ton or paperwork, signed my life away,  answered a bunch of questions about metal, Couldn't remember if I had any fillings and had images of my teeth being ripped out of my mouth. But the wonderful woman comforted me and said that everything would be fine and it was a painless procedure and that I was young, we'd be in and out and everything would be okay.  I believed her. Ignorant IDIOT!

(Here's a little setup) What I know now...that I didn't know then is that one of my triggers is noise.  I had no idea how loud MRI's are...or that they basically rock your world sound-wise. Okay...I'll continue.

So, she shows me how it all works and tells me that I have to wear this helmet (super cute) and that there will be sounds (oh were there sounds!) and not to move or swallow and to press this bulb if I do and to also press the bulb if I have a problem and it shouldn't take too long...and here we go.

Ok.  I close my eyes.  I start to feel weird again. Almost right away.

The sounds start. Voom Voom Voom Voom Voom.

Don't swallow.

Why are my legs shaking? ---- Press the bulb.

The attendant walks over and asks me why I pressed the bulb.  I told her my legs are shaking.  She looks down and sees that they are still shaking.  She grabs another blanket and asks if that helps.  She then asks if I want to stop.  I say no. She say tells me that she doesn't think the shaking will effect the MRI because my head is still so we can continue.  I'm thrilled because it means I don't have to miss anymore work - IDIOT!

So, she goes back to her booth.  She repeats the same section so I hear the same frequency where she was the last time only she does it a little bit longer, this time my legs aren't shaking they start jumping off the table, then, seconds after they are jumping the loss of control moves to the rest of my body and I can't even really explain the rest because I don't remember.  It's the first time I've ever had a seizure.

I came to, because I must have only been out a few seconds-which actually isn't the norm. And she asked me why I didn't tell her I have seizures.  I told her I didn't know.  She said we better stop.  I told her no.  I really didn't want to reschedule.  I really didn't want to miss another day of work.  IDIOT!!!!!

She went to look for her radiologist to see what she should do and she couldn't find him so she told me that that she would try one last time.  I'll be kind here and say that that was not a wise choice.

 She strapped me in - another seizure.  This time the radiologist walked in and saw it, he said she just had a Gran Mal seizure and he called 911. I actually asked him not to for some weird reason.

I think I answered a call from work in the ambulance. So dumb.

I'll stop here for now.  Brock's gotta eat -er well I need to need to turn on some Christmas music and sing at him while he throws food on the floor :)  Maybe I'll add a a video of that...it's pretty hilarious - especially in my "I'm-disabled-stay-at-home-mom-ridiculous-combo-of-clothes-uniform" Although I don't own crocs, should I get crocs?


Still to come - the diagnosis - temporary memory loss - deafness - job loss - more ER visits -dealing with doctors offices for paperwork - loss of friendship and so much more...

But the heros of this story are here too, the family and friends who continue to offer support even when I'm so deep down in the hole I've decided I'm camping out there for a while...they keep throwing down ropes hoping I'll grab hold.  Even when I don't grab hold, please keep offering, knowing that you are there keeps me going, some days it feels like it's the only thing besides my sweet family.  All of your calls, messages and facebook posts, they make my world feel bigger and brighter. Thank you.

Raspberry berets won't keep those seizures away!

Ok reset from a terrible day.  And back to the story about why I am feeling so frustrated.

A little more info.  After the edger/tremor incident there are far more intricate details to the story before I get to the diagnosis of the big word...da...da...da EPILEPSY!

Well, before I even get there I can tell you that I remember the first time I had what someone told me was a "seizure." What the heck is that? I felt like my whole body spasm-ed, I couldn't control myself and the world seemed like one big magic eye puzzle (again for anyone not born in the 80's or 90's - these were books where you kind of crossed your eyes then re-crossed your eyes and then found a little bunny behind a magic hat in all of this trippy-style background, the fun part was hearing people get aggravated and say, "I just can't see it, I don't think it's a real thing.")  It is. Sorry.

You're trying to do it right now aren't you?

It's always about you.

LOL.

Anyway...

Some people who were thought to have had Epilepsy:  (you are totally going to be impressed by the company I keep here...)

• Hercules
• Socrates
• Plato
• Danny Glover (even if he is too old for this)
• Caligula
• Susan Boyle (who brought us all to tears with her voice on Britain's Got Talent)
• Julius Caesar
• Harriet Tubman
• George Gershwin
• Joan of Arc
• Ellen G. White (All you Seventh Day Adventists!)
• And of course as my title reflects, the musical sensation, the artist formerly known as the symbol, formerly known as Prince.

Now what's amazing about this is that there are still people who think that Epilepsy is something that people should be afraid of, not talk about or pretend doesn't exist.  It's epilepsy, not leprosy (not that I want to offend anyone who is a leper.)

So, I'm a month late, (November is National Epilepsy Awareness Month) but here are just a few general facts.  And then here are a few facts about me so when I get asked questions I won't want to scream quite as loud, because once upon a time, I had absolutely no idea what any of this was about.

So here you go: You are welcome...

1. You can’t swallow your tongue during a seizure. It's physically impossible.  (You can be embarrassed, apologize, be confused and lose your memory, and wet your pants, and lots of other unexpected surprises, so please be kind.
2. Epilepsy is NOT contagious. You simply can't catch epilepsy from another person. (However, people with Epilepsy are extremely good looking so you may find yourself very attracted to them - seriously science does not lie, just look at that picture of Prince.)
3. Most people with epilepsy CAN DO the same things that people without epilepsy can do. However, some people with frequent seizures may not be able to work, drive, or may have problems in other parts of their life. (yeah - the 2nd part is me right now...but I'm hoping that won't be forever - that's what I need your good thoughts and prayers for, I need to get a handle on how often my seizures are occurring.)
4. Even with today's medication, epilepsy CANNOT be cured. AT LEAST 1 million people in the United States have uncontrolled epilepsy. (I'm hoping to be one of the people who get meds and move on - quickly, I don't want to sit around, But right now you could say I'm one in a million - of a million...let's not split hairs.)
5. Epilepsy is NOT rare. There are more than twice as many people with epilepsy in the US as the number of people with cerebral palsy (500,000), muscular dystrophy (250,000), multiple sclerosis (350,000), and cystic fibrosis (30,000) combined. Epilepsy can occur as a single condition, or may be seen with other conditions affecting the brain, such as cerebral palsy, intellectual disability, autism, Alzheimer's, and traumatic brain injury.

6. Some people get an "aura" before a seizure. An aura is a distinct perception either visual, motor, sensory or psychological felt around the time a seizure occurs. (I'm lucky, I do get these.  I used to get them only a few minutes to a half an hour before.  Now I can tell you an hour, sometimes hours before a seizure may occur, I'm not really sure if that's lucky, I guess I'd say it's useful.)
7. There are various triggers that impact seizures here are a few: sleep deprivation, at times of fevers or other illnesses, flashing bright lights or patterns, stress, not eating well, specific food triggers, specific sound triggers.

Ok, than's enough for today.  Sorry for all of the facts.  Let's hope this week slows down a bit and I get some kind of good news this week.  This has been a rough start.

Thanks for all of your encouragement and kind words.

Sorry - I kind of hate everything and all holiday cheer today!

Been up since 4AM. Sick self (beyond seizures), sick baby (got it from the baby who we think licked the shopping cart handle last weekend-score for us for awesome parenting), smoke filled house trying to cook food that won't give me seizures (yay for trying to be healthy), long days for the husband all week (long days for sick mom and baby).  No end for this "temporary" problem in sight.

Angry at the world.

Enjoy your holiday festivities.

Oh yeah...be Merry.  Please, be merry.

Sorry I can't be positive and look for spiritual growth everyday...it's one of THOSE days.

Also, my favorite comment of the day is that I'm negative and that might be why people may not want to run over here during the day and visit.  Hmm...maybe it's because they have jobs, families, lives etc.  But thanks for making it MY FAULT!

That is all.

Omimax in the 90's blew us away, these kids today and their 3D, okay 3D is pretty cool too...

This illness has recently changed my life.  I can't drive. I don't do a lot because I'm on medication and I have a small child. I don't have a lot of visitors because most people work during the day and I live in the burbs so there isn't a lot of transportation options.  And even if I did there is currently a risk of having a seizure.  Again, sounds like complaining, but it's a reality.

Also, it's Christmas.  I've had to drastically change my diet due to things that trigger seizures. Limit wheat (by the way bread is just about my favorite thing in the entire world), no sugar, (say what?), no preservatives, (so nothing then), no artificial flavors, no artificial colors, no alcohol.  I'd say I'm pretty strict and stick to the diet anywhere from 90-95% of the time because I really really dislike seizures.  What does that mean? No Christmas cookies, no hot chocolate, no apple cider, no drinks, a lot of the festivities we typically enjoy are not happening this year.

Also, I'm not working. So a new financial diet for us this year.  Like I said, I'm not really into things, but being blasted email after email with holiday gift specials for the little one and having to restrain oneself...ah! Not so fun!  Good exercise in self control for sure, good reality check about what's important, but not fun.

And it's hard to hear that my mom is baking all day and families are out shopping and doing fun things and people are complaining about traffic and Christmas shopping and getting fat from holiday treats.  Blah, I envy you.

But that's not what was really the change in my life that was on my heart today.  I titled my post for a specific reason and my mother in law stopped by to visit after some appointments were cancelled yesterday and we had a really good heartfelt talk and it made me realize something about how this illness and God has made the biggest change in my life. But first some background...



When I was a kid, I LOVED going to the museum for a field trip!  But for all of the wrong reasons.
 I loved the bus rides because I could let my hair down and talk all the way there and not get in trouble.  I was also such a good kid in class I saved up all my talking for field trips!  I'd talk about and to boys and get goofy and silly because teachers were typically out of earshot.  I felt like I could  be more myself.  By the time we got organized at the museum I ignored most everything except for my ticket time for the Omnimax Movie Theater Show.  If you don't know what I am talking about it was a giant dome-shaped theater that made you feel like you were actually in the movie even though it wasn't 3D.  Sometimes there were roller coaster simulators or helicopter rides where you felt your stomach drop and you really felt like you were in the movie.  It was amazing!  The thing is I never, ever paid any attention to any exhibit at any museum I ever went to.  I was always waiting for the big show or the movie or the presentation.  I never read a single plaque.  I never spent time at the Natural History Museum learning anything that didn't require a worksheet.  I never paused to care about any of that, I flew through all of that.

And now, in my life, I have the opportunity to stop at each exhibit and read every "plaque."  I can ponder the significance, appreciate the history, marvel in the beauty and be grateful for the moment in time and the perspective to do this.  Each person in my life keeps revealing more and more to me as this journey continues and I am in complete awe.

I hate this illness.  I know I shouldn't say hate.  But I do, and I won't lie, I cried and felt sorry for myself tonight, because I had a rough week and the baby is sick and I got it too. But I'd be lying if I didn't believe that I wasn't being taught something here.

Each night while I was working, I put the baby to bed (don't get me wrong I LOVE being a mom), but I hoped he would fall asleep pretty quickly and stay asleep.  I rocked him a little and put him in his crib almost robotic-like because I was exhausted from my day.  Lately, I've been putting him to bed and I notice his breathing, I notice the hairs on his head and the sweetness of his face, and sometimes it's hard for me to let him go.  And I tell him quietly I'm sorry I'm sick and that I'll get better fast for him.  But he doesn't care, he just knows I'm Mom and feels safe enough to sleep soundly in my arms and doesn't want me to let him go either.

I'm excited to take him to the museum when he's older.  I'm hoping to teach him to walk by and take in a little more of the museums than I did. I really hope I can stay open to learning from this experience and not get bitter. I want to grow and I want to change in a positive way. I've always come away from negative experiences a little bit better and a little bit stronger. I pray this is no exception.

I was minding my own business doing a little yard work.

I'll start at the beginning, but I won't promise to go in order. Sorry.

Randy hates yard work. And we all cry, "Poor Randy." Unfortunately for him, when we moved to Naperville, I was pretty far along in my pregnancy and it was a pretty hot summer.  That meant very little yard work for this Momma.  Not because he didn't want me to do it, I think it was more along the lines of he didn't want anyone to see that he'd let me do it!  But anyway not the point...the point is that we agreed that I would eventually do the lion's share of the yard work.  This was absolutely fine by me! I came from a family where we fought over each other to cut the grass (I'm not really sure how my dad pulled this one off.)



My dad taught us kids how to make the diagonal lines and edge and sweep and trim and oh, it looked just like the mental picture we took when he showed us what the perfect yard looked like.  I lusted over a yard like that. I wanted a yard like that one day.  And moving from the city, I couldn't wait to own my own home, get into my own back yard, take off my shoes and walk around in my very own grass. I could just feel it between my toes.



Heaven.

Flash forward.

July 2014.  Not as easy as it looked.  Maybe after I had a couple of kids to brainwash into thinking it was a treat to maintain my yard for me or something, I just don't know how he did it, but I didn't give up.  This past summer as an Executive Director of a large Y and a new mom, I was going to garden and I was going to try and keep up the yard even if I had to beg and plead with Randy to help me do it.  I felt like I failure I just couldn't keep it up.  Could I pay someone? Where is that neighbor kid? Crap, he went back to school. Well, I guess this is why there are lawn services, I wonder how much they charge and then out of nowhere a little dad angel and dad devil sat on my shoulders taunting me about the upkeep and maintenance of my yard.  I knew that I couldn't do everything. But I knew that I could do somethings, so I went back to the basics.  Let's get the grass cut, let's edge and sweep and we can worry about the rest next year.  Problem was, we didn't even have an edger.  Off to Home Depot we ran...


We bought the very tool that led to the discovery of my illness and had absolutely no idea what we were doing.  I try to run that moment over and over and over through my mind.  Maybe everything would have been different if we hadn't bought it.  Maybe nothing would have ever happened.  I guess I'll never know.

We took our preferred edger home after getting edgy with each other  (sorry I just couldn't resist) over which one was better because neither of us had any idea at all.  I'm pretty sure it sat in the box for a month.  Randy took the first one we bought back because it wouldn't charge and then I think he used it once.  And then I used it once without any problems.

And then in late July my mom was visiting us to spend time with the baby. I decided to take her up on some babysitting and went outside to do work on the yard.  I cut the grass and then feeling proud grabbed the edger and made my way around the yard. I was stressed from work, tired and hadn't eaten much that day.  I was pretty exhausted.  I finished up and showered up.  I sat downstairs with my mom, Randy and the baby and my left arm began to shake. It wouldn't stop.

I said, "That's funny, the edger made my muscle spasm."  But it wouldn't stop.  It kept shaking and even holding it wouldn't make it stop.  My mom said, "Wouldn't the other arm shake too?"

That was the beginning for me, I went to bed that night not knowing that it would get worse. That my whole life was going to change.  That the shaking was a tremor of things to come.

I've decided it makes the most sense to blame my dad for his love of yards.

Okay, campers, rise and shine, and don't forget your booties 'cause it's cooooold out there today.

Thats right, woodchuck-chuckers - it's

GROUNDHOG DAY!

gif by Chris Piascik

I have more time at home then I ever dreamed.  Each and every day is like the movie Groundhog Day. I remember a co-worker explaining parenthood this way.  Only in parenthood, you can have some variance of experience with your exposure to the world, which currently I don't have, at least during the week - except when I run outside to try and meet the mailwoman and say hello and grab the mail. (See - more complaining.)  She thinks I'm afraid the package bandit is going to steal my packages when all I want is human connection while the baby is napping!

There's a funny thing about that movie, Groundhog day.  I was complaining - let's say venting - to a friend over the phone one day.  I was comparing my life to that movie in a very negative way, when it dawned on me that the movie is actually very positive.  (Yes, it's also brilliant and stars Bill Murray who is amazing, hilarious, ridiculous etc.) And although the character has his rough times, he eventually comes around and starts learning about the woman he loves.  First it's trickery and superficial.  Then he starts to shift, he actually starts to become a better person, his hobbies become real, he becomes a kinder person. He accepts the change, he embraces it.  And he makes the most of it.  A lot of people would argue that he didn't do it for himself, he did it for the woman he loved in the film...well, okay, maybe that's true.  But, in my own life, in my own Groundhog day, I'd like to find a way back to acceptance and then rebuilding and doing it for me.  Maybe at first I have to do it for my family, my boy, my husband. But I've got to find a way to get back to myself. Find strength from God. I'm not sure how to get there yet.  I think I'm still at the accepting part.

And it hasn't been real pretty.  There's been a lot of snot and swollen eyes, self pity and wallowing.  And let me say I feel really guilty about that because there are many other people, people who have listened to me cry who have been through much worse, life-threatening illness themselves or their family members, and here I am with an inconvenient and invisible illness.  People must have thought I was being a real baby.  And I may not even be done with it that part yet. And I'd totally apologize, if it weren't coming from a complete and honest heartfelt place.  It's where I'm at.

I don't really regret, but I wish I hadn't let so many things bother me in the past, I wish I had gone out more with my friends when I had the chance, even though I'm very optimistic that this situation is temporary. I can't tell you how much I crave live HUMAN PEOPLE!!!!  (Sorry, that sounded really odd, I promise I don't want to eat them.)  And I had a lot more control over how I spent my time then I thought. I always told my staff how to spend their time and then I'd go home and work on budgets and emails and spreadsheets and I was a real hypocrite. (Some of those lies I told myself.)  I miss work, but I could have paced myself differently through the years. I could have led a healthier life if I had allowed myself to be a priority instead of allowing my career to take center stage.  I didn't nurture friendships appropriately. I should have put myself first and cared less about what other people thought or wanted from me/my career.  I could have been less sensitive. Why didn't I do that? I guess easier said than done when your priorities aren't set.

And now, seizure after seizure things become clearer and clearer.  That probably doesn't make a lot of sense.  And I realize I'm going completely out of order and not explaining much about why I'm sick and what is going on.  But that really doesn't matter, it's not relevant today.  What's relevant today is Groundhog Day.

Just getting started...more to come.

Many people have been generously following my complaints...er...my journey through illness over the past several months.  My goal in blogging here is not to complain, although, if I want to I will, so be warned!  But my goal here is to use this blog as an outlet and for support from friends and loved ones who choose to offer it.  I'm also very interested in photography, especially utilizing my two favorite subjects, my sweet boy Brock and my handsome Golden, Chance. My husband may sneak in there too :) Ok, he's pretty great too.

I'm not someone who is interested in the latest trends or things, or money, glamour or superficial things.  I'm really interested in healing, health, spirituality, well-being and authenticity.  Before any of this happened this past July, I had a done a lot of soul searching regarding friendships and where my life was headed, whether or not money, position, things etc. were the road to happiness. I felt like I had struggled so much to reach a certain point in my career, I hoped that at some point I might work hard enough to finally take a breath and utter the words, "I've arrived."  In regards to "things" I'd even rationalized the need for them by having a coupon or getting them on the cheap when the reality was they were another item that I just didn't need.  They added to the clutter that was in my house and truly in my life. I was in a sinking boat that was taking on water.  Over the past several years I had added on promotions, a couple of moves, a wedding/husband a baby and a new home filled with all of the things I thought the home should have in the suburbs and thought that very soon, the words, "I've arrived" would be falling with ease from my lips.

And to my satisfaction, there were brief moments of bliss, followed by total confusion.  All of a sudden, everything seemed difficult.  Life seemed like a lie, and the promise that this was a dream and that I was following a plan, well now the boat was sinking and my head was barely above water.  All of the things I thought I knew were true about my life, all of the lies I told myself about success and work and priorities were about to slap me across the face into the ground over and over again.  But I'll save that story for another day.

For now, I'm re-framing the word "stuck" at home to say that I have a once in a lifetime opportunity to stay home with my almost 1 year old boy and my dog Chance.  I may not be able to drive around and it may be cold outside - okay there really is no way to re-frame that!  See, I warned you there may be complaining!  But, I get to stop, breathe and re-tell myself the story of my life, only this time in a new way.
The new story might go something like this:

The girl who struggled through bad relationships survived, she worked her way up a non-profit job. She succeeded at reaching her goal job and wasn't a failure because she lost that job, instead she continued to thrive because she realized that life goes on and believed that she truly is the mother of invention, just like her friend Eleanor believes her to be.

I'm not finished. I won't ever be. I will win this. But this is my story, this is my survival, and I'm inviting you to encourage me along the way.

Thank you.

"It may be hard for an egg to turn into a bird: it would be a jolly sight harder for it to learn to fly while remaining an egg. We are like eggs at present. And you cannot go on indefinitely being just an ordinary, decent egg. We must be hatched or go bad." C. S. Lewis