Chevelle

I have a cousin.  She has a daughter, making her daughter my second-cousin, it’s simply semantics really, I have always looked at Elli like a sister.  I was able to watch her grow up, blossom into a smart, caring, and beautiful girl, then pissy teenager, and now brave woman.

A few months ago she told me she was expecting.  I was a bit shocked because she is so young to me (is it bad that 19 years old seems so young when you are only 27 years old), there was school, there was a career she loved, there was marriage, and then the baby in the baby carriage…

It took me some time until I quickly realized I was doing the same thing to her that I hate when others do to me.  Those pesky expectations.  We all have em, and we impose them on those we love the most because we want the best for them.  I cried when I moved away to college, feeling like I was leaving her behind, I cried at her high school graduation, and I cried when I found out she was pregnant.

On May 15th her water broke, she was just about 19 weeks.  I cried then too, a lot.  I still do.  Her daughter, Chevelle, still had a heartbeat and we waited.  I won’t go into the details because it isn’t my story to tell (I do have permission to write this post however), but I am so proud of Elli for making choices based on her beliefs and what was best for her and her daughter.  On May 16th Elli delivered a beautiful little girl.  She was a special little girl because she was born with wings and was already in heaven.

I cried and cried.

The pain of those days and the lingering pain that follows continues to ripple through our family.

I wanted to spoil Chevelle, I wanted to watch her grow as I did with her mother.  I wanted to be there for her to tell all of her secrets to, I wanted to be her safe place as Elli’s mother Julie (my cousin) was for me when I was weathering those hormone fueled teenage years (and thought my own mother was stupid – I am so sorry, I love you mom!).

Whether Elli has more children is her choice and I respect no matter what decision she makes for herself and her family.  All I can say is she is one brave woman.  And if does decide to have more children I will spoil them just as rotten as I would have Chevelle.

I love you Ellen!

MW

The reason I write…

I have always enjoyed writing.  It’s always been an escape.  A way to be authentic with myself.  A way to speak my truth.

My intentions for writing were never to hurt anyone.

I spend a fair amount of my time apologizing, for things I can’t do, for things I have done incorrectly, for doing or not doing things I should or could have done.  I never want to apologize for what I write here.

This is my space to figure some things out.  As I have said before, I have a difficult time articulating exactly how I am feeling, but for some reason, when I sit down here I am able to articulate my feelings.  Sometimes those feelings may be dark, depressing, cynical, even cruel.  But they are my feelings… it’s so hard to apologize for them.

I come here to better understand myself.  My intent is never to hurt anyone.

MW

To hoping…

Maturity to hand you

More than your illness

Owning your story

Screws us up

Thinking is difficult

We are injured and hurt emotionally,
not so much by other people
or what they say and don’t say,
but by our own attitude and our own response.
– Maxwell Maltz

Love means not ever having to say you’re sorry.
– Erich Segal

Most truths are so naked
that people feel sorry for them
and cover them up,
at least a little bit.
– Edward R. Murrow

MW

On his birthday…

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What can I possibly say to describe how I feel about this guy?  This photo was snapped almost 9 years ago.  We weren’t even dating yet.  I was enamored with him, infatuated.  I thought he was the sexiest guy in the world.  He was edgy, he was a rebel, I wanted to skip all of my classes to hang out with him (which I did).  He was kind.  He never made me feel uncomfortable or like he expected anything from me.  He let me be 100% me and I liked that.

These years have been the best years of my life.  I don’t need both hands to count how many people truly understand me and he is number one.  He loves me – all of me.  That kind of love is rare.  He appreciate my weirdness, my nerdiness… I appreciate his old spirit, his bleeding heart.  I love his patience, his capacity to love.

I never believed there is ONE person for each of us on this world and I don’t know if I necessarily believe it now, but I know there is no one else on the world I would want to share my life with.  There is no one else I want to have children with.  There is no one I want to face all of life’s trails and tribulations with.  My mom always told me to find a man like my father to fall in love with.  Growing up my dad could do no wrong in my eyes, he was perfect.

I found that guy and I am damn lucky.  We don’t push each other to be “better”, we push each other to be our truest self.

Even though he will never read this (he says he doesn’t need to read my blog because he lives with the off-screen version), he is my rock and I would be lost without him.  And he is still that sexy hunk of meat I met almost nine years ago!!

MW

My Secret

My family recently experienced an unimaginable loss and it has made me start to think.  A lot.  Which is generally dangerous.

It’s amazing what I am willing to share with all of you… I am willing to strip myself bare for all of you, when to be honest, I don’t think I could verbally articulate the words I share here.  Hell, these posts end up on my Twitter and Facebook pages – some of you may be reading this from my high school, haven’t talked to you in years and yet, here I am.  Sharing my vulnerable moments.

My secret is I am the most insecure person you will ever meet.  Literally.  Maybe this disease has made me vulnerable to insecurities… but I think back and I have always been insecure.  I have always wanted to be the “cool girl” but could never quite make it.  I have always been self-deprecating (minus the excessive modesty part).

I guess my point is I feel as if I have always been the person to be willing to take on everyone’s emotional baggage.  Maybe so I never really had to deal with my own.  Maybe I am just selfish enough to think I can cure the world of it’s suffering and madness.

I am exceptional at alienating people and then blaming them for abandoning me.  Maybe “I” isn’t the right term… my monster?  Who knows anymore.  As I begin to “accept” this disease into my life I am beginning to lose a grip on who I am.  It gets more and more difficult to discern Amanda vs. the MD… I feel like either I am becoming Amanda again, or becoming the monster.  Somebody has to win…

As I begin the last legs of tapering off my benzo I feel more and more dissociated from myself.  I feel less needed by people.  I feel like I need people more.  I don’t reach out and ask for help because… well… what’s the point?  I feel pissy and short-tempered.  I am always jealous.  Jealous of what I don’t have, jealous of what I will never have, jealous of what I see my friends doing for their other friends.

I have said before I know how high maintenance I am to have as a friend.  I wouldn’t want to be my friend.

When I have the balls to share these feelings with Matt he asks me what I want and I just say I don’t know – because I don’t.  I feel like a hormonal, pissy 15 year old.  I don’t know what I want.  A connection?  To feel needed?  To understand myself so others have a chance to?

MW

If I felt fresher in fur…

I would hibernate.

I just wrote a very long, seething post but decided against posting it.  Why?  Because the point I was trying to get across would have pissed off a lot of people.

It was a post about letting go.  So here I am, trying to figure out how to let it go.  How to let go of the expectation that you are going to get what you give?

Yep, there is my confession for the day folks.  I am working on a Ph. D and I still am naive enough to think people will give you back what you give out.  It’s one of the greatest cosmic jokes.

Thankfully I never believed in karma.

MW

Jan!

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I would be remiss to not give a shout out to the other mama in my life!  I am super fortunate and blessed to have such a rad might as well be mother-in-law.  Not only is she one of my biggest supporters, she gave birth to a pretty amazing guy who I was fortunate enough to snag!!  Sorry ladies.  I love this lady a ton – Happy Mother’s Day!

MW

Mother’s Day

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amanda 1

To my mama:

I love you.  There is really no other way to say it.  I tested you, I pushed my limits, and even though I almost gave you several heart attacks, you let me.  You have always told me children need to test their limits, and I appreciate it.  Without the opportunities you gave me I wouldn’t be who I am today.  I know you saw my life differently than what it has become, but regardless I am strong, I will never give up, I have your backbone, I love fast and hard – all of these things I have from you.

You not only carried me inside of you, you still do – emotionally.  You are ALWAYS here for me.  You have become one of my best friends… and I love our relationship.  I wouldn’t trade you for the world.

Love you!

MW

Isolation

I think the isolation of this disease is one of the more difficult topics to describe to those you don’t experience it.

For those non-chronics, think of your day.  You probably wake up, get ready for work or school, get in your car.  Arrive either at school or work and have conversations with other people throughout the day – coworkers, clients, classmates, small talk with the clerk at Target.  All of these small acts take place and aren’t really thought about, they are just part of your life.

A snapshot of my day goes as follows.  I get up, 6 out of 7 mornings I am dizzy first getting out of bed.  If I am lucky I can shower, sometimes I have to wait for Matt to get home.  I go downstairs, take my meds.  Then it’s usually work on school.  There is usually no interaction there because it’s all virtual.  If it’s Monday and Matt has all day meetings, I usually won’t speak to another human being until 6 p.m.  The other four days of the work week Matt calls on his lunch break.

Now I am not saying every day is the same.  Sometimes I have phone calls to make, UPS comes, or I talk to my mom on the phone.  But it’s difficult on those days when I go hours without talking to a single soul who can talk back (the cats are not great conversationalists).  I am sure some of you are thinking how nice it would be to not talk to anyone for this amount of time.

Sure there are days when I don’t mind the solitude.  But the truth is, after a few days it gets old and super lonely.  It’s isolating.  A variation of my daily schedule has been happening for a few years now.  It’s beginning to affect how I am in social situations.  I crave interaction, but when I have the chance to enjoy it, I am awkward, I fidget.  I feel uncomfortable… I know it makes no sense…

The brain fog takes over and this post ends.  Damn you MD.

MW

Feeling compelled…

So, there is something happening in my life right now that I am compelled to write about.

Frankly, I have been telling myself to NOT write about it because it is a hard subject to discuss.

Following my second surgery I was prescribed Ativan.  I was given it via IV during my hospital stay and then to take as needed at home.  My recovery was rough as most of you know, so I began taking it at night to sleep.  Then I needed more of it.  Suddenly I was taking it three times a day, for almost three years.  For those of you that may not know Ativan is a benzodiazepine, a narcotic.  It is controlled.  It is addictive.

As my life continues to progress I am thinking more and more about how someday I hope to start a family.  Of course this is a category D drug, meaning it has been found to produce physical and psychological abnormalities in both human and animal fetuses.  It is an absolute no-no during pregnancy.  Children born who have ingested this drug inside the womb experience withdrawal after birth and typically have issues throughout their lives.

I decided with my physician I would get off of this wonder drug.  I call it a wonder drug because it works wonders for people with MD.  It not only quells the anxiety this disease produces, but it also has been found to settle the inner ear.

I found myself relying on my pills.  I began to resent them.  They began to be a medicinal straightjacket.  I was bound to them.  I was terrified to not take them.  I became dependent.

One thing you must understand I only took them as prescribed.  I took three per day, which is what my physician had prescribed them as.  I never took more than I needed.  But isn’t that what all addicts say?  I couldn’t go anywhere without them.  They needed to be within reach.  They became my security blanket.

About four weeks ago I began the process of getting off of this medication.  I was prescribed a different medication which I am now tappering off of.  Today I am down to one pill in the morning and one pill at night.  I am only taking two pills per day.  What a relief!

In the same breathe I am having to deal with heightened anxiety.  As my body detoxifies, it must balance itself out.  I feel everything so intensely.  I made clear I was afraid of physical withdrawal – which I have experienced none of, other than some fatigue, but who knows if that is just the MD.  I expected the psychological withdrawal, which has been noticeable.  I feel myself having a shorter fuse, my highs are higher and lows are lower.  I know, with time, this will even out.  I can’t wait to be free from these meds.

I need to experience life – both the positive and the negative, in a way most do, without looking through hazed eyes.  I simply cannot be on these meds the rest of my life.  A recent study shows benzodiazepines may have a possible link with early Alzheimer’s Disease.  We joke in my support group that maybe forgetting would be easier, but we all know we don’t truly want that.

Life is too short to be dependent.  It’s too short to rely on a pill to fill a void you think you have.

I write this post for those of you who are struggling with dependency, who are grappling with the idea of tappering off your meds.  You can do this.  Please do so under a physician’s care.

I also want to say that this was my choice to get off of these meds.  I know there are those who are at different stages in the disease and their life.  In no way am I trying to say you shouldn’t be on medications such as these.  It is your body, is your choice, and your right to do with it what you will.

I hope you all are well!

MW

Need help

So, we all know how poor I am at asking for help.

Here I am.  I need help.

With my good news about my assistance dog, I am humbled by the fact that this organization provides these dogs free of charge.  They live solely off of donations.  It can exceed $25,000 to raise one puppy.  I have started a crowd fundraising campaign to give a donation and pay it forward.  I am asking for your help.

https://www.indiegogo.com/projects/can-do-canines/x/10689476

Acceptance

So, I applied for a service dog with an organization called Can Do Canines in New Hope, MN.  Does anyone else see the bizarre coincidence in their location?  I sure do.

Anywho… I applied for a dog that would primarily assist me with my mobility issues.  A wonderful trainer came out to the house to interview Matt and I.  She said to give it a couple weeks to find out if I was accepted or denied.

Thursday Matt got home from work and told me there was something in the mail for me.  I knew it was from Can Do.  I told him to open it, I couldn’t.  He gave me the eyes and I opened it.  I read: Dear Amanda, Congratulations!, hugged Matt, crying, jumping up and down.

So I have to try to wait patiently for my furry match and begin training.

I posted the song Fortunate by Atmosphere the other day… ironically right before I found out I was accepted.  This is one of those moments… I’m not lucky, I am fortunate.

Check out Can Do here: http://can-do-canines.org/

Tomorrow

To preface: anyone with Conservative eyes may want to avert them.

Tomorrow I embark on a journey… it’s the annual 5k walk/run put on my NARAL Minnesota.  I know NARAL – those evil people who enjoy killing fetuses.  The 5k is for Women’s Rights, which I take serious issue with because let’s face it – women’s rights are human right’s.  When it comes to reproductive rights, last time I checked my science books it takes both sperm and an egg to create a fetus.

In addition, and more importantly to me, is other issues such as equal pay, ending cultural discrimination, ending domestic and sexual violence against both women and men are why I walk.  I walk because I am a chronic, I am a woman, I face a hell of a lot of obstacles – as do many others.  In an imaginary world, let’s say I could work a 9-5 job Monday – Friday.  Do you really think someone is going to hire me with a disability over someone (man or woman) without a disability.  I hope you all are laughing as hard as I am.

I will be walking with Matt and his mom Jan.  I think this our fourth or fifth year walking.  Jan (my amazing granola/hippie might as well be mother in-law) and I are pretty even on how we feel about women’s (human) issues, particularly reproductive and economic issues.  Matt walked with me for the first time last year when Jan was in Indiana taking care of her mama.  I was proud of him for walking with me – not just because he was obligated since I was still pretty unsteady then, but because I know how he feels about these issues.  He was involved in this pretty cool program in grade school about how to be a good dad and taught about reproductive options.  Pretty freaking cool right?

Throughout our life experiences together with my medical issues he has always told me whatever I do with my body is my choice.  I can’t help but grin ear to ear when he says things like this because I know he means them.  He would never impose his will on me or make me do something or not do something to my body that wasn’t my choice.

He truly believes in equality.  He’ll still open the door for me when we go out, but I think it’s just because of my illness.  If I weren’t a chronic I would get a lot of doors in my face.  Some of you reading this may be turned off by this – but I am the opposite.  I love when he treats me like his equal.  I open doors for him too sometimes if I am feeling good.  When I am down he does the laundry.  I work in the yard.  It’s how our relationship works.

He walks with me in solidarity.  He walks with me and his mama because he doesn’t believe our bodies are meant for governments legislation.  That’s one of the zillion reasons why I love and respect him.  He would never admit to being a feminist because he hates labels – but I tell him he is all the time.

So tomorrow I hope to make the full 5k, with a raging sinus infection/cold/allergies going on right now, the dizziness has been ramped up the last few days.  But the beauty of doing this 5k is I have the CHOICE to only do 2.5k if I want to.  Cute isn’t it!

MW

We’re not lucky… but we’re fortunate.

Fortunate – by Atmosphere

I highly doubt that y’all think about sex
Anywhere near as often as I think about death
Go ahead and shout at the top of your lungs
But don’t wake the baby up, we got a lot to get done
That little light indicates a connection
And if it’s all the same I’d like to make a suggestion
See, if everybody on this comet agreed
We could set the clock to whenever we want it to be
I just might just modify the mileage
I don’t know much, but I’m confident the fight’s fixed
So high that I feel like a pilot
Falling out the sky full of brilliant brightness
Hurry up, stir me up
You gotta learn the words before the whole Earth burning, but
We wouldn’t even need to recognize your birthday
If you were the center of the universe in the first place
If I had feathers I would fly away
If I felt fresher in fur I would hibernate
If I ever figured out how to communicate
Maybe then we could accumulate
For now face the wall, I ain’t the same as y’all
A real friend wouldn’t make you take the fall
Sometimes life’ll try to break your balls
With the long list of missed wakeup calls

You know I wanna feel special
Walk around the festival carrying a big stuffed animal
I try not to make a mess though
Gotta stay sensible, ain’t nobody coming with the antidote
I wanna watch you grow
And I wanna leave the planet better off than it was handed to me
And I don’t know, there’s possibility
So I settle for selling my soul to the slaves of the land of the free
I don’t wanna leave my family tree behind
I don’t anyone to miss me like I miss you
But I don’t wanna take up too much time
I’m not trying to run away from the line we drew
The sunshine seems to feel so seamless
The soldier is a dreamer and a realist
And history sealed this
Taught me that a hero ain’t nothing but a field trip
Nah, I know you’re down to do something profound
Put a stick in the ground to prove you was around
No amount of time will ever be considered enough
I’m trying to tether it up and live forever through love
We’re not lucky, but we’re fortunate
I’m pretty sure of it
And all the life we wasted trying to make some bread
Might’ve been better spent trying to raise the dead

Dehumanizing

Dehumanizing: to deprive of human qualities or attributes

Someone in one of my support groups used this word to characterize MD.  I was stunned (and a bit jealous) at how I had never thought of it before.

We humans have that pesky little part of the brain known as the hypothalamus – which is responsible for a ton of hormone release, including those hormones involved with fight or flight.  This is lovingly referred to as the animalistic part of the brain – for instance, hunger is primarily controlled here.  I am not an expert on the brain, but I hypothesize when an MD attack strikes the rest of the brain is attempting to steady the world, that fun loving hypothalamus kicks into high gear.  When I have an attack I feel like an uncaged animal.  My ability to concentrate, control emotions, even speech is affected.  My hypothalamus goes into overdrive – here is the fight or flight.

The philosophical question is: how does one-self flight from one-self?  You can’t.  You can’t ‘flight’ – unless you have the ability to disassociate, which is another super intriguing psychological phenomenon.  You are forced to fight, often silently, while the rest of the world whirls around you (yes, I’ll just leave that pun right there).

Here is how dehumanizing this disease is.  When the vertigo hits, even the bad off balance days, I don’t feel human.  I feel like an animal.  My primary concerns: using the bathroom, eating if possible.  That’s all I get.  I lose all control over parts of my body.  I couldn’t put a 10 piece puzzle together some days.

Sort of in line with this train of thought, one of my great friends from Facebook posted this amazing meme today:

Chinese

If you click on the meme it gets bigger so you can read it.

The meme is pretty self explanatory so I will leave it at that.

MW

Brain Fog: Dennis Stelling

DISCLAIMER: I wish I could take the credit, but I can’t for writing this one.  My new friend Dennis Stelling wrote this on his blog: http://dennisstelling.blogspot.com/2015/03/brain-fog-exposed.html?spref=fb

Brain fog: that moment in time when you are having a discussion and …………Wait what was I writing about again????

Oh, yeah. Brain fog.

That moment in time when you meet and old friend and…………….Who was I talking to?????

Oh, yeah. I am trying to explain brain fog.

This should be easy. It’s right on the tip of my tongue………………or fingers………….or???

You get the point.

But there may be a logical explanation of why we Menierians (I stole that word) have trouble remembering things.

It was recently explained, although not directly, to me as it pertains to hearing loss.

You see, our brain is an amazing computer. One that cannot be copied for it’s complexity.  Each part of the brain is created with it’s specific portion to do a specific job.

But here is the interesting point.  If a part of your brain is not doing the job it is designed to do, it doesn’t just sit there waiting for something to do, it does something else.

Brain scans have been done of people who are born deaf. In the beginning, the portion of the brain that is supposed to understand hearing just sits there. But as time goes on, that portion of the brain is used for something else.  Maybe it is sight. Maybe it is taste. Maybe it is reflexes. The point is, the brain finds itself too valuable to just sit there doing nothing. And in the case of deafness, by the time a person is 12 years old, the entire brain is occupied doing something and the portion of the brain used for hearing may be lost. Permanently.

I have been in some Deaf (note the capital D for Deaf Culture) groups where I hear them saying that they have better eyesight or other senses than hearing people, and that may very well be the case because the brain is using more than the originally planned “space” for those senses.

Now, for my interpretation, with some scientific backing, for “brain fog”.

Being a computer, your brain loves information. The more the better. It can’t get enough.

Also being like a computer, it goes by the same rules that I learned in my first exposure to them: GIGO- Garbage in, Garbage out.

If the information that your brain is receiving is “garbage”, it doesn’t know what to do with it so it spends a lot of time and energy trying to figure it out.

And when something completely new and foreign is introduced into your brain, such as tinnitus or vertigo, it needs to find someplace in the brain to try to figure out what it is supposed to do with it. That means something else it was doing, it no longer has time for.  The more intrusive the “new garbage” the more space and energy it spends figuring it out.

Again a computer analogy.  How many of us love our brand new computer? It runs fast! It never locks up! But over time, as new programs are added, and errors occur, it slows down, s l o w e r, and s  l  o  w  e  r  and s   l   o   w   e   r.

Here is my scientific backing.

In the case of people who are born deaf, and later in life (past that magical 12 year old point) get a cochlear implant, the part of the brain that is supposed to understand hearing is busy doing something else that the brain finds important. It doesn’t stop doing that because it now is hearing things. It doesn’t know it is supposed to. Therefore, the sound is going to a different part of the brain. Brain scans are showing it going to the part of the brain responsible for short term memory! AHA! Brain fog!

The same may very well be the case when we start having tinnitus and vertigo. The brain is using a part of the brain not designed to figure out what the heck is going on, so it uses the energy from short term memory to try to sort out why there are birds chirping in my head 24/7 and why the world spins.  No time for things like memory anymore!

Now, wasn’t that a great (in my humble opinion) explanation of brain fog?!

You remember it, right?

Yeah, I didn’t think so.

‘Til next time

Dennis

Rocks right???

MW

A topic no one wants to talk about

Let’s talk about sex.  Not just sex, but intimacy, which doesn’t always mean sex.

I promise not to get explicit, but for us Meniereians who are in a loving, intimate relationship – intimacy can be difficult.

If I have somehow not made it clear by now, MD affects each and every aspect of our lives.  It is no biased against what it can ruin.  Going out with friends, concerts, big family get-togethers are not off limits.  Sex and intimacy is no different.

I think it’s important I write this because we all struggle with this but because sex still remains this taboo topic we choose not to talk about it.  Or maybe it is just too painful.  But we have all felt it, the longing to be intimate but it simply isn’t possible.  Not only the positional issues, but the endurance, the ability to let everything go and focus on your partner is no easy task when you feel like you are on a pontoon boat all the time.

Not only can the act of sex be difficult, but just simple intimacy can be uncomfortable.  There are some days when I don’t want to be touched – my skin feels like it’s on fire, physical touch hurts.  Sitting on the couch and holding hands can be awkward.  Matt has restless leg, so he is always needing to fidget.  I need total stillness.  For some reason when something is near to my face I have a hard time concentrating, it can put me into a spin.  When he comes in for a kiss or a hug it can throw me off.

You know what I am talking about don’t you?  We don’t talk about it because it is no f’ing painful.

I think there is also the issue of partner vs. caregiver… where is the line drawn.  It’s difficult to be intimate when he has to hold my hand when I am going to the bathroom.  Fifty Shades of Gray makes taking a bath together sound sexy – but after my second surgery Matt had to bathe me while I clutched the sides of the tub and wept.  Not sexy.

The other issue is body image.  I have gained weight, as in I am the biggest I have been in my whole life.  I am in no way fishing for compliments.  I also am in no way shaming women who are my size or larger.  I feel unhealthy, I feel fat.  I am a feminist, women of every size, shape, weight are beautiful.  Confident women are beautiful.  I am not confident at this size.  This is a small part of the difficulty I experience when wanting to be intimate.  On top of everything else – will the world spin if I lie down?  Did I remember to take my meds this morning?  I feel fat.  I look fat.  I should have showered this morning.

Thank goodness I have such an understanding man in my life who is willing to be patient with my crazy, silly, messed up, turned upside down life.

This post was super difficult to write but I think it’s important we are comfortable to discuss it.

MW

When your body betrays you…

Today, I ventured out into the world.  By myself.  This is monumental.  It’s Matt’s first day of his new job.  I wanted to practice being a good wifey so I told myself I would gather the necessary supplies for dinner.  I walked through Byerly’s like I owned the place.  Head held high – acting like my shit don’t stank ya’ll.  In my mind I was chanting to myself, I can do this.  Is that lady looking at me because I can’t walk a straight line?  Who cares, I am doing this.  A taste of freedom.

These are the good times.  These are the manageable days.  There are days when my body betrays me.  These are the harder ones.  I have to pee.  Like, I really have to pee, but if I get up the room may spin, I may fall.  I want something to drink, so I get up, moving slow… the room shifts.  I fall.  Knee hurts for three days.  My body betrays me.  I want to tell Matt a funny story and can’t remember the punch line because the brain fog is so heavy.  He looks quizzically – like is there a punchline?  Damn it.  I can’t remember.  I try to not cry.  Sometimes I do quietly when he isn’t looking.  He gets frustrated when he asks me a question and I just say yes.  I have no f’ing idea what he just asked but I just say yes because it’s easier than saying ‘what’ for the 3405034598th time.  He knows I don’t have a clue what he just asked and gets frustrated I don’t just say what.  What he can’t understand is the embarrassment that comes along with this.  Just because we have been together for almost nine years and he has seen me at my most vulnerable, I still want to put on the smile for him.  I still get embarrassed.  I still try to trick him into thinking I am ok.

I am almost 27, I should be spry – spontaneous.  I am hardly able to be.  I stand up with intent and forget what I am doing.  Sometimes I get hyper-focused and jolt back to reality and it takes a minute to remember where I am in time and space.  My body betrays me.

The moral of this story is don’t take for granted the good days when you have control over your body.  I usually refer to my physical body as my husk – because that’s all it is to me.  I grew up corn-fed in the Midwest so I equate these feelings to when you shuck corn on the cob.  When you peel away the husk (physical body) you expose what is truly inspiring about the corn (the spirit, the mojo, whatever you want to call it).  That dead, crusty, dry husk protects what really matters.  My physical body is foreign to me – just a husk.  It’s whatever the gooey insides are what really matter.

MW

Heated

I read a beautiful blog post from Huffington Post – it was a teenage chronic who was writing about how difficult it is to be diagnosed as a teen with a chronic illness.  It doesn’t matter what her illness is, because all of our pain is the same.  Our anger, frustration, sadness, loneliness, it’s all the same.  Grief is the hardest feeling to tackle.

I there is one thing that gets old fast when it comes to this disease is the sympathy – and pity.  I don’t think non-chronics truly understand the difference between sympathy and empathy.  I beg for empathy, not sympathy.  I want you to put yourself in my shoes, not feel bad for them.

I feel bad for myself enough, the last thing I need is a pat on the head and “there, there, things will get better”.  To be brutally honest, things don’t get better – you learn to MANAGE.  A chronic illness never goes away.  My symptoms will probably never go away.  You know how big a pill that is to swallow?  Try to swallow the state of Texas and maybe then you can grasp the finality of a chronic illness.

An even bigger pill to swallow is the chances of me being fully deaf someday.  Not losing my hearing from old age, but being deaf in the next decade or two.  I will be 27 in May – I want to hear my children call me mommy, I want to hear my teenagers sneaking out of the house – I want to hear my grandchildren.  I may be able to.  I may not.  The cosmic joke of it all is that I don’t know.

Again, I feel bad enough for myself.  The last thing I need is pity.

I don’t tell you these things for you to feel bad for me.  I tell you them so the next time I walk out of a room at a get-together or I start fidgeting you understand why.  I tell you these things so when I turn down a night out or I leave early, I am not being rude.  I tell you these things so the next time you meet another chronic you don’t give us the classic non-chronic look.  The same look you give an abandoned dog in a shelter.

I tell you this stuff because I am still here.  I AM HERE.  LOOK ME IN THE EYE.  I am not contagious.  My disease may be invisible, but I am not.  I am a fighter.  I will never give up.  My reason?  All of you.  My family, my friends, my partner, all of the people I have met on Twitter and Facebook, for Viv.

Sure my anger bubbles to the surface and makes me lose control.  Sure I still swear at God, cry my eyes out, beg for death during an attack.  But that’s the beauty of being a chronic.  I wake up everyday and push forward.  This disease is a bitch and I refuse to let it define me.  I have learned how to cage my monster.  I do it by binge watching Fringe or listening to rap music, digging in the dirt in my gardens, being a crazy cat lady, reorganizing my closet for the 495,867th time.

I get out of bed everyday because I refuse to let my legacy be suicide.  I fall apart and shatter into a billion pieces and then Matt and I pick up the pieces and glue me back together.

This is my life.  I know it makes some people uncomfortable.  This is my story and it is my own.  It may not be everyone’s taste, but the key is to understand it is Amanda’s story – with a little Meniere’s Disease.  Not the other way around.

MW

Whew!

It’s been eons since I have updated everyone here.

It’s incredible how much and low little my life has changed in the past few months.  I think my surgery was a success!  With that being said, I still have symptoms.  I am on a three day bad streak currently – could be the weather, stress, who knows what.

We traveled to Indianapolis, IN for a week at the end of February for a school function for me.  Just last week we were back in Hobart, IN for Matt’s grandma’s funeral.  It was a lot of travel, but spending time with my family was awesome.  I got to meet some of Matt’s cousins and an uncle I had never met.  Fast Helen was loved by so many people.  She was buried in the most pimped out casket I have ever seen.  I have talked about Matt’s mom here before.  Once again, I was able to see and feel her strength and she said goodbye to someone she loved with every fiber of her being.

I have applied for an assistance dog!  It could be a long process, but a worthwhile one.

I have a court hearing for my disability case in July.  Whoo hoo.  It’s been a few years waiting for that too!

With the good comes the bad.  I am still experiencing symptoms – sometimes quite intense.  With both surgical ears, one a double surgical ear, it’s very hard for me to discern whether the dizziness is prompted by the right or the left.  The ringing and fullness is easier to detect.  It is very possible scar tissue is growing/has grown in the left ear and someday I may have to get that corrected.  That decision is one for a different day!

I am pushing on, tending to my emotional and physical garden.

MW

Spoons

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To all my fellow spoonies:

I hope this weather isn’t kicking too many asses.  The spoon theory is my new bible, and with the holidays knocking on our door step I have to remind myself that I still only have so many spoons and I have to use them carefully.

I love the giddy feelings I get around this time of year. The good and the bad.  Matt and I put up our Christmas tree and my heart became heavy. Will I have a bunch of munchkins gathering around my tree in the future? Will I be awoken to those excited giggles like I did with my parents? The answer is I don’t know. And that’s ok. With limited spoons I have to make myself not use one on expelling emotional energy I don’t have. Matt assures me that he isn’t going anywhere and isn’t that what really matters? We have such an unconventional life, an unconventional love. We have to be wise beyond our years. Whatever happens, happens.

We are hosting Christmas at our house this year. A small family gathering. I still and look at the spider webs, the dust, and I feel overwhelmed. I quickly remember those things don’t matter. I want to save my spoons to love on Matt, have those deep conversations only a daughter and mother understand, and giggle with, and at, my father. I want to use all my spoons on loving this holiday season.

The spider webs, dust, and worries over my future can wait. The best gift I can give my family is myself, present, enjoying the little moments that seem to always happen during the holidays.

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MW

To Matt

A love that will last a lifetime.

Too many times it seems we take for granted the ones we love. We wait for birthdays or holidays or some other special occasion to say “I love you,” “I appreciate you,” or “Thank you.” We let life carry us away on a never-ending road filled with the responsibilities of day – to – day existence.

In our busy lives, we often forget there is more along the way than just bills to pay, phone calls to return, and errands to run. There are people in our lives needed to be hugged, who need to be loved. There are people in our lives who need their accomplishments noticed and praised. We need to remember how fragile hearts can be, how quickly a soul can grow weary, how fast a spirit can break.

Forgive me for forgetting that a heart is like a garden that needs to be tended to and nourished with what only another heart can give, love and appreciation, devotion and honesty.

Thank you for loving me and for putting up with me. I appreciate you not only for what you have done, but for what you have become and what we are together. I am proud of you and I am proud to be with you.

Even when the road of life becomes a little too curvy or a little too long, I love you, and I want you always to remember that.

The downside of getting better….

So if I am completely honest, which as most of you know, I always am.  I am feeling pretty damn good.  On good nights I can sleep in bed.  On bad ones I am in the chair.

While all of this is so amazing I could stand on a roof top and rejoice – there is a downside to getting better.  All of a sudden there are higher expectations.  I want to preface this post by realizing that a lot of this is displaced.  I acknowledge that most of these expectations are ones I put on myself, not that others put on me.

Higher expectations.

I have slept in bed.  So when I don’t, I get those eyes.  The one’s that we all know.  The eyes of a loved one begging for us to just be normal.

I find myself completely shocked when I sit down at the end of a day and feel like I just ran a half marathon.  The fatigue is so real it is difficult to explain.  It is almost painful.  You need to get up and make dinner and every sliver of muscle rebels.  I feel sluggish when I wake up.

So, I slept in a chair for two and a half years.  It took several months to be comfortable in that chair.  I remember the back, neck, and rib pain from having to sleep in the chair.  Now my body is experiencing that in reverse.  Waking up in the morning there is throbbing pain in my ribs, back, and neck.  I grit my teeth.

I am over-exerting myself.  But I can’t help it on the days I feel good.  I have taught myself that when I feel good I have to accomplish every task I have been thinking about because I may not feel that good tomorrow.

My thoughts are fleeting.

One symptom that hasn’t gotten better is the tinnitus in the right ear.  Buzzing, snapping, popping.  Almost constantly.  I had a hearing test, which was normal, but I am having a harder time hearing what others are saying when there is background noise.

I am learning this new normal.

MW

Dennis Stelling

A poem authored by a fellow sufferer in a support group I am part of.

Meniere’s
By Dennis Stelling

It hits you fast, it hits you strong
Leaves you to wonder what you did wrong
It comes on hard, maybe a day
Then for a while it’ll go away
When it’s gone, what blessed relief
Until you spin beyond belief
You’ll change your diet, you’ll change your life
People will tell you “That’ll end your strife”
Nothing can stop it, suff’rers know this
’cause we got a Meniere’s diagnosis

Your hearing goes, your hearing comes
All the while your head just hums
“Get an aid, that’ll solve that problem”
All you hear is people mumblin’
“Find a Doctor, get it fixed”
We all know the results are mixed
We all long for a solution
That will result in complete resolution
Nothing can stop it, suff’rers know this
’cause we got a Meniere’s diagnosis

Someday we’ll wake up free of attacks
Wondering what happened and want our life back
We’ll go through life with a degree of fear
Always knowing vertigo is near
You’ll live your life as best as you can
But somehow still feeling you’re less of a man
If I look good it’s ’cause I’m not suff’ring
So, please, please never accuse me of bluffing
Nothing can stop it, suff’rers know this
’cause we got a Meniere’s diagnosis

Almost three weeks…

It has been almost three weeks since my surgery.  To say this recovery was different from the last one would be a severe understatement.  I am able to walk.  Turn my head.  Even run if I need to.

I am confident that this surgery has made some kind of difference.  To say I am cured would be a lie.  I still have those all too familiar moments of dizziness.  But I am still healing, and I am stubborn.  I refuse to give up.

I slept in bed last night.  All night.  From 12-8.  It was the first time in 2 1/2 years!  I woke up to Matt next to me.  I was afraid we would have to transition back to sleeping together, but it was like I never left.  I still fit next to him.  I was still the little spoon.  Emotions bubbled to the surface.  Ones filled with joy.

It isn’t very often I experience true, unadulterated joy.  This morning it was visceral.

While I may not be cured – I am moving in the direction of having a life.  My own life.  It may not be what I consider “normal”.  But it’s my life.  I can choose how to live it.  Finally.

MW

Angelface

It’s like I follow anywhere el Diablo go
Took a stroll with the feline
And sat silent while the snow flakes fell into the design
Can’t let her dance up on top on the top floor
Been there done that
What do you think it’s locked for?
I’ve lost more to my traveling soul
Then I care to talk about so I’ll be out, I’ll be on the road

-Atmosphere

Collective

At this moment, there is probably a few people poking around inside my skull.

It is surgery day and whether I was ready or not, it is happening.

This is me, pleading with you to never give up – take calculated risks.  Hell, I don’t know what is going to happen to me when I wake up.  I don’t know what tomorrow looks like.  I don’t know the outcome.

Matt, as our collective hands are sweaty and stomach in knots – I want you to know that I love you.  I fiercely love you.  No matter what happens today, or tomorrow, or the day after I know there will always be one constant thing.  Our love.  The safety we have created.  The love we have fostered.  It’s steadfast.  I can’t wait to see your face when I open my eyes for the first time.

MW

 

I’ll follow you anywhere…

I talk a lot about Matt.

I think about him all the time.

It’s so simple and so complex.  We are knit from the same cloth.  We are each others addictions, and each others recovery.  We believe in each other.  Not in some corny Lifetime movie way.  The way that only a few of us are lucky enough to experience.

We shoulder the weight of each other burdens, neither of carry our own cross.

We would follow each other anywhere.  Not just geographically.

We inspire each other.  He doesn’t make me want to be a better person, he inspires me to be myself.

He has chosen to stick around in this turned-up, twisted, crazy, silly thing I call life.

MW

Where to start…

I know this song is ridiculously trendy right now – but what the hell.  It’s a current theme song.

2014-05-19 23.16.09

Wake Me Up

-Avicii

Feeling my way through the darkness
Guided by a beating heart
I can’t tell where the journey will end
But I know where to start

They tell me I’m too young to understand
They say I’m caught up in a dream
Life will pass me by if I don’t open up my eyes
Well that’s fine by me

So wake me up when it’s all over
When I’m wiser and I’m older
All this time I was finding myself
And I didn’t know I was lost

So wake me up when it’s all over
When I’m wiser and I’m older
All this time I was finding myself
And I didn’t know I was lost

I tried carrying the weight of the world
But I only have two hands
I hope I get the chance to travel the world
But I don’t have any plans

Wish that I could stay forever this young
Not afraid to close my eyes
Life’s a game made for everyone
And love is the prize

So wake me up when it’s all over
When I’m wiser and I’m older
All this time I was finding myself
And I didn’t know I was lost

So wake me up when it’s all over
When I’m wiser and I’m older
All this time I was finding myself
And I didn’t know I was lost

I didn’t know I was lost
I didn’t know I was lost
I didn’t know I was lost
I didn’t know
I didn’t know
I didn’t know

Angelface

There’s a thin line between gossip and gospel
And there’s a house over there near Wicker Park
Where I found out smart was afraid of the dark
Had to break a heart just to help me heal up
Tie a knot in the stomach just to help me seal up
Make sure the demons stay beneath the core
Pray for you and yours and whoever you believe in more
Look around you there’s angels amongst us
(Look around you there’s angels amongst us)
Sittin’ in the rain at some sidewalk cafe
Half of her wet cigarette in the ash tray
She’s tryin’ to find a lost soul to save
And I’m a lost soul trying to find a road that’s paved
Keep faith in my suitcase, pack my beliefs
Angels exist, I’ve even seen some sleep

-Atmosphere

Two weeks…

Two weeks until the big day.

I am feeling particularly testy.  Matt and I had it out a few nights ago.  He needs me to be honest and stop apologizing, I need him to cut me a break.  I share these personal things with you not because I am always this open (although usually I am).  I share them because I am sure there are other warriors out there who find themselves taking it out on their loved ones.

I expect a lot of Matt.  I expect him to just get it.  To get the anger.  The anxiety.  The fear.  I expect him to always be patient, never call me out on my shit.  To treat me like a queen, but a princess at the same time.  I expect him to accept my selfishness, to love me despite all of these ugly things.  I expect him to be my emotional punching bag.  I expect him to let me blame the mundane annoyances on him and for him to just take it.

This is the honest truth ya’ll.  This is how I feel sometimes.  I completely understand these expectations are SUPER unfair and I am working so hard to grow from them.  I have doing some research into Buddhism, and what I love about it is it never asks us to manipulate or change our feelings.  Simply understand they are there.

I always feel like an asshole.  That’s the long and short of it.  The best part about Matt is I can tell him these things.  Tell him my ridiculous expectations and he doesn’t look at me like I am the asshole I always feel I am.

The best part about the whole thing, is he DOES GET IT!  More than most in my life.  He gets it.

Cheers to those in our lives who get it!