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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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