Chiari Bladder

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“you need to pee!” “OK. I-” “But you can’t!” “But I-” “Gonna pee on yourself” “If you just-” “NO!” Chiari Bladder

It is hard to imagine that a part of my body that I have had control over for my whole life is now working on its own.  I remember thinking I had an infection when it got noticeable.  I would have to urgently pee, then like, nothing.  Drip, drop.  It would happen many times over the day.  I sent to the urologist several times, there is nothing wrong with my bladder or my urinary tract.  It is getting bad signals from my brain.

The event that made this really fun is when I had a focal seizure and peed on myself in the kitchen.  I didn’t realize at the time it was a seizure, I just remember I was looking out the window, then my leg was wet.

LIFE!!!

I do take a medication now that stops the excess bladder spasms and helps with the incorrect signals, allowing my bladder to actually fill before needing to go to the bathroom but also keeping it closed when I was not going to the rest room.  Of course, the muscle it too weak to control stress incontinence and well, that is how it goes!

At 30 something I am getting used to the idea that my body just kinda functions how it does and honestly, this is nowhere NEAR the the worst of my problems right now.  I mean it it actually is close in proximity, but not in the grand dysfunction of other “body things”.

Writing about this is super weird because I am such a private person, but I felt so alone after my surgery.  After things didn’t go how we expected post-op, I was left to figure out how to handle it.  I found some good friends and the best thing they did was explain the underbelly of chronic illness.  They told me these things would happen, so while I hoped that it would take longer or we could prevent it I didn’t feel blindsided by the dysfunctions I experience.

So I hope that sharing my own stories helps someone feel like this is just a thing that happens.  It doesn’t happen to everyone, but that doesn’t make the rest of us feel better!  I also encourage others to share their stories because the more diversity there is out there, the easier it will be for others to relate and feel a little more “normal”.

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Lies I Tell Myself: VII

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Lies I tell myself. “This is all a bad dream…”

There are days in my life where everything is so absurd that I am positive that I am stuck in a bad dream and I desperately want to wake up.  This past week has been full of them.  I was supposed to get a upper endoscopy and a colonoscopy and the day before I get a phone call that I now need a release from my neurologist because of my seizures and tachycardia.  From the patient point of view all I know is that when I eat my stomach reacts painfully, at times regurgitating food I ate hours prior.  Then when it empties it is like having a baby pass from my stomach to my small intestine.  From there it can sit for days…until it eventually moves into my large intestine.  It just grows until my abdomen is tight and painful.  I will spare the details of the end of the journey, but know that I would rather not eat than experience this everyday, all day long.  I have dealt with this for six weeks.  I had a seizure and I haven’t been quite right every since.

I have lost close to 20lbs, but have managed to add some weight on.  I don’t want to be sick-thin.  I am having trouble taking my vitamins and it my energy levels.  I have calmed down my level of activity at PT and Dance because I have been having issues and falling.

All of this seems unreal to me as I look back at what I just wrote.  It feels like last week I was living a normal life and now all of that is gone.  In reality, it has been almost three and a half years and I simply have recollections of feelings and notions of events that have no grounding in time.  Of the physical horrors my body commits all too often, it is the existential horror of not having a firm grasp on the passing of time is beyond my greatest fears.  I always wonder if I will recognize my daughter in ten years.  Will she stay twelve in my head forever?  Seems like I saw her yesterday but she has been gone for almost a week.  I literally have to go through social media and my memory logs and question people who I may have been around to figure out what is happening in my life.  I rely on my phone to tell me everything I have to do, when it needs to be done, where to go to do it, and all the people who are involved.

Still, every morning right before I open my eyes, I feel the stiffness of my joints, I assess the level of pain in my head and neck and shut off my CPAP and realize THIS IS MY REALITY and my dreams are only a temporary respite from my daily issues.  Every night when I go to bed, I pray that I wake up to something different…just not worse.

This is my reality that I have to accept again every morning.

My New Friend!!

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My Little Friend

I have not talked about her much (I don’t think) but for Christmas I was given a Shillelagh because I couldn’t find a cane with a handle that didn’t hurt the palm of my hand.  Eventually, I guess my stepdad found one that was genuine and the correct height, and he got it for me as I was using my canes more and more.

I was excited to get it.  I know that it was Irish in nature, so I started doing some research so that I wouldn’t be ignorant of the beautiful walking aid I received.  Turns out I received a weapon and I am keen to use it someday on that one person…

Anyway, mine is made of the traditional blackthorn and the club handle is a little larger than my fist.  However, the shape of it fits my palm and causes less pressure so I can use it for longer periods of time.  The bottom is thorny, black, and has a copper tip.  We have covered the copper tip (as that is a tip off of it’s weapon status and weather stability matters) and I try not to herd people with Shanaylah (her given name) it actually gets people moving when they decide to clog up hallways and other places.

One of the great benefits of having it is that I can go for walks at night and I am less likely to fall and I have gained a pretty good idea of how to defensively wield Shanaylah.  Prayerfully, that time will never come, I like peace.

Now I am pretty much always accompanied by my third leg and I am so thankful for it.  I know some people don’t like the idea of having to use a cane and I understand the feeling of wanting to just walk.  I have no shame anyway, so using a cane just allows me to live a little better than without it.

I know it is jarring to no longer be able to rely on a part of your body to behave as you have always expected, but at the very least, if you have to get a walking aid, find one that fits your personality and it will blend right in eventually.  The only way to take back control, it so assimilate this new thing into your life and control it for your benefit.  I don’t know if that sounds harsh, but I want so badly for people to know that there is no shame in doing what you have to do to live your best life.

Right now, I am a scared mess because I can’t control a lot of stuff, but with Shanaylah I am able to control my mobility and I have something there just in case my leg gives out so I don’t fall.  It is not what I wanted for myself.  I have been in physical therapy for about six months now and it has only gotten worse with the seizures.  Thank goodness I have a way to get around, and now it is awesome and a little dangerous.  We’ll see if they let me into the federal court with it.  If not, trust me, there will be a post about it!

Life On The Other Side

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Perspective Shift

In August 2018 I suffered a series of seizures that were seen by someone else of I was awake for.  The first rule after any first aid is NO DRIVING!  Which was cool because it turns out I have been having tiny seizures for a while…even driving or eating or swimming.  Thank God I didn’t ever hurt myself or anyone else.

As most of us who drive know, it becomes very easy to become a driving commentator or worse, a passenger/back seat driver!  It has now been six months and I have had difficulty adjusting to being at the mercy of whoever is driving me, but one day I had to sit in the back seat.  Having multiple cars allows me to sit in the front usually, but ole’ Yukon had a misfire so my stepdad picked us up and sitting in the back seat was very different.  As a child I loved watching the scenery roll by whether we were going down South or to the bank.

Suddenly I realized there was a while Las Vegas out there that I have ignored in favor of memorizing streets and geographical locations, zip codes, addresses, and everything I needed o get around this city for the past 23 years.   Now, I was able to focus on mountains in the distance and appreciate them, look at buildings, watch birds, and I was amazed at how much of the world I have blocked out of my mind.

I think this may (or may not) be a good analogy for my life.  For so long I was in charge of it.  I decided what I did, ate, how long I slept, and basically everything else.  I pushed my body through canyons, up mountains, on rocks, and I god my desired results.

Now, my meds tell me when I will wake up and go to bed.  They control my appetite.  I have trainers for my body and mind that tell me what to do, how often, and for how long.  I have a body that has taken control and tells ME when we go to the bathroom or have insomnia.  At first I fought every bit of this by doing more, working hard until I was exhausted.  Then the testing period came and I little control over my life, all the tests showed I was normal and that made this process more frustrating,

The seizure in the neurologist’s office is what gave us the green light to start treatment with some confidence until we can get more information.

*Update (because I forgot to publish!): I have spent some time in the emergency room after a seizure last Friday morning and life has only gotten more interesting from there.  I did not post because I was completely out of it and I don’t always schedule weeks ahead unless something is coming up.

I have been having seizures any time I participate in a lot of physical activity or even just talk or sing for a while. I woke up Friday morning and I couldn’t move.  At the hospital they explained that it was Todd’s paralysis (part of a syndrome, I guess) and it happens after a seizure and you are just kinda stuck there.  Luckily I had my CPAP on, but it was a terrifying experience.

I am back to PT twice a day and dance and choir and whatever else I need to do to feel good about my life.  If it puts me in a condition to get us closer to the answers I am not going to stop.

Ok, bedtimes!!

Chiari Dance Lesson #1

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Chiari Dance Lesson #1: smile, it will hurt!

While I have a ministry at church to attend to, I often like spending time with other ministries to become familiar with how they work on the inside so I can be a better liaison when Helps asks for help from another leader.   I have done several, but dance is a beast of a different species.  The arts (IN MICHELLE’S OPINION) all lost some luster when I am trying to create someone else’s vision.  I can’t see choreography in my head like the leaders can and then, they want it a different way.  Then they liked the first way better.

Very rarely will I put myself in a position to fail, but here, I find myself poised to do poorly.  I lost my grace and balance.  I am like a duck out there, walking around all crazy, flapping my arms at times.  Pretending to know what I am doing.  I have no real technique.  I just want to be able to perform and do a decent job.  I look forward to what I will be able to learn and hopefully regain some control and stability in my body.  I would chicken out after Christmas, but I made a commitment and I wish to honor it.

Honestly, the teachers are quite patient with me, but I hate for it to be because of my brains.  I know each one of them fairly well, I wouldn’t say we’re friends because I don’t share secrets with them, but we are all used to working with each other under multiple circumstances.  We are all on decent terms, so, I will learn as much from them as I can remember.  Six more months of dancing with the group and then I’m out!  I was going to do drama, but apparently doing anything is drama for me, so I am paring down the things I plan to be involved with.  I don’t know where my health is going to lead me and I need rest.  I can’t be everything to everyone.

My goal is that by this time next year I have grown enough to rid myself of anything that is subtracting from my life without adding any value.  I suppose that means going through the phone again and deleting more numbers.  Life, right?

Anywho, back to my main point.  It has been fun and Challenging to get to understand the motive behind dance.  It has been a positive experience for my body and even my angry little mind.  I am more upset that I didn’t do dance when i was able-bodied.  Still, I am hoping that by the time my commitment is finished that I will have learned how to think, move, and feel like a dancer.  Just in case I ever need to cut a rug and don’t have scissors!

Lies I Tell Myself: III

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Lies I tell myself: I am just hungry

I think it is unsettling to have pain and not have a reason for it, so, here is another lie I tell myself about my headaches!  I just need to eat something!  I just ate?  Well, I didn’t eat enough!

It is crazy to think that eggs and bacon are going to fix what is wrong with me, but something about my memory problems gives me this daily dose of hope that things are going to work out just fine once I do a certain thing.  Then, when it doesn’t work, I am forced to accept that hunger was not the reason for my pain.  It is OBVIOUSLY some other thing that I believe I have control over.

Just wait, I have a whole purse full of lies that I tell myself.  I will keep telling them to myself because it keeps me moving forward.  I don’t want to lose faith, so I choose to believe that one day, one of these things is going to stop my head from hurting and I can just be thankful that the pain is gone.  Like, I would love it if God gave me healing eggs, but if He chooses to allow me to go through this insanity, at least it is interesting and full of plot-twists.

If you are struggling to keep afloat, remember that there is always the chance that pain can go into remission.  Whether you share my belief system or not, people have experienced pain relief through various methods and sometimes it is spontaneous.  If you don’t get the relief you have been searching for, don’t let that keep you from enjoying however much of your life that you can.  if you can only do a little, do it well and be thankful.  I know it seems cliche, but thankfulness can have a terrific effect on how you view your situation and once you spot a little bit of good, you are likely to find more and more.

I hope you find the joy you seek, even if it takes time.  Know that I am on the same journey as are millions of others in the world.

 

I Am No Hero!!

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I am no Hero!

Going through the medical dog and pony show has been quite the eyeopener for me.  I now understand things about people in pain that I never even considered.  I also now feel the inconsiderate thoughts and words of others and it can be very alienating.  Some people are mean because they think it is funny, some because they don’t know better.  Some treat me with kid gloves or like I have become a fragile relic, some artifact that reminds people of who I used to be.

Then there are the people who feel like I have overcome some supernatural enemy and I stand in bloody victory waving my banner.  They weave a narrative about how horrible everything became then how it was miraculously transformed and I have earned some type of sainthood for enduring life.  And while I imagine is is great to bask in that feeling, I do not wish to be stuck in my own puffed up head as if I had much to do with surviving my ordeal.

I am no hero.  When they told me that I had to have brain surgery, I sat in the parking lot and wailed as if someone had died.  I called my mom and was in such a worked up state that she had to calm me down before I shouted that I had to have brain surgery.  I hear my daughter gasp.  Mom’s phone was on speaker because she was driving.  My daughter, who was on her way to a performance, had heard me lose my marbles on the phone.  I went to my sister’s house and cried for three days.  Sometimes she sat and cried with me.  Other times, she let me cry in solitude.

Hard to imagine Batman ignoring everything (even my own child) because he was told his brain slipped out of his head and was drooping into his neck.  He has his own source of pain though.  I suppose this is where we differ.  He has turned his pain into a mission and proactively fights crime.  I am good to be making it to my doctor appointments.  While I do some volunteer and advocacy work, I am not fighting for anyone else right now, I am fighting for me.  So that I can have the ability to speak out for other people who don’t have a voice.

Just imagine how awkward it is for someone to tell you that you are brave for living or a hero for living or an amazing person for living.  I feel like that takes away from people who are actually heros.  A firefighter puts his or her life on the line daily to save others from dangerous situations.  THAT is a hero.  Police deal with all sorts of insanity, knowing every day that they leave their house might be their last.  THAT is a hero.  Our service men and women willingly go out onto battlefields and too often come home changed physically, mentally, or emotionally.  THAT IS A HERO.

My neurosurgeon spent 6-8 hours operating on my brain with the full understanding that my entire life was in the care of his highly skilled hands.  HE IS MY HERO!  He got me out of there alive.

Still, I am no hero.  I feel that we shouldn’t use that word so lightly.  If put in my situation, most people would do pretty close to what I have done.  Deal with it day by day.  Try to enjoy the good times. Complain about the bad times.  Really, it is a dull existence that pushes me to want to become a hero of sorts.  I spend a lot of time with doctors, on the phone with insurance and doctors, and scheduling future appointments with doctors.  Not nearly as heroic as it sounds.

Don’t let that fool you though.

I plan to be a hero one day and use my abilities to assist my community.  Then I can accept being called a hero.  Living in pain is a life that many people have and they make it through.  They go through the same things I do, at times more and they aren’t being called heros.  They are often forgotten about.  Some are considered a burden and are made to feel ashamed about their condition.  I just happen to look “normal” and seem “normal” to many people and so I must have overcome some giant hurdle and I am now an inspiration.  I wonder if I am as inspiring when I haven’t taken a shower for two days and my hair looks like a rat’s nest and all I want is coffee and cartoons because my head is killing me.  Am I an inspiration when my attitude is like a fiery cyclone leaving only destruction in my wake?

No.  No I am not.

I do not wish to be.  I want to be Michelle.  A mom.  A minister.  A witty woman.  All of this other stuff that is going on is just me doing the things that I have to do to keep going.  I am not sure how to just give up and that is NOT heroism, it is simple perseverance.  I have to keep going so my daughter has me here to help guide her through life as well as I can.  That is the SAME THING that every mother does no matter her situation.  Sometimes I don’t do as well or go as fast as other parents, but many parents are perfectly healthy and slow.

Life would be easier if we recognized that it is not brave or heroic for going through a medical procedure, it is simply a part of some of our lives.  I would like to feel welcome and loved instead of having to live up to the standard of a hero.  That is too much burden to bear.  I am human and I fail.  I have moments where my faith is wearing thin.  The best are the moments when I can’t control what is coming out of my mouth and I would be considered ANYTHING but a hero.

So, before we celebrate victories we can’t comprehend, let us just treat each other well and be there in the victories and the losses.  Be there when the test results come back and aren’t good or be there in the middle of the night when there a tears of pain overflowing.  You will find a fragile human with issues that is not wearing a cape, but is wrapped in a blanket to help feel comfy.  There will be no soaring through the air, only splayed out on the sofa or bad, trying to stay in a position that feels OK!

While the sentiment is lovely, save it for the people who deserve and earn that title.  I am a fighter who is training to be a hero someday.