About Michelle Michelle

I'm a single mom with an awesome daughter. I love God, bacon, music, and family.

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!!

Lies I Tell Myself: VI

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Lies I Tell Myself: I don’t need to write that down. I’ll remember!!

One of the biggest problems that me and my neurologist struggle with is that in the heat of the moment, I don’t really remember that I have lost the ability to remember much, so I think I will remember like I used to, but later I learn the errs of my ways…again!  The worst partis constantly feeling bamboozled by my brain?

I have a phone that takes notes in at least four different ways, I keep a memory log (which I often forget about!), and I always have paper with me.  No reason I should not have access to all of the information I receive, but that old part of me just swears that we got this, meanwhile, my whole brain is on fire as I think too hard about what it was I forgot!

This process has been repeating itself since as long as I can remember…which isn’t long,  so I can’t really give an answer.  I suspect that it has been at least since the surgery, possibly since a little before.  Memory was one of the first major symptoms behind the pain and nausea.

My phone calendar is full of therapies, appointments, naps, meds, and more therapies.  I am trying to get better at remembering, but am considering having a pin made that says “if I didn’t write it, you didn’t say it”.  Not sure how people would take it.  I realize my inability to remember their super important information is anathema in their eyes, but I am not the person everyone remembers and wants me to be from 2014.  Trust me, if I could go back I would, but, that isn’t how it works, so here I am.  Thinking I am in 2014 in my head (because time hasn’t really moved for me) in terms of cognition and 2016 in terms of time.  I feel like the world went on without me when I remember that I forget.  Every time I remember that I can’t drive it seems like I was driving yesterday (I was not!) but it seems like it.

These are the worst because they bring up three years worth of misplaced emotions and fractured memories.  I can’t drive because someone drove into the back of my car as I turned into church to use the restroom.  Such a simple act changed my whole life.  Ruined my dreams, stopped and reversed my vocal progress, and made into what I am today.

However, the blessing is really in the fact that I don’t have to carry the weight of my emotional burden everyday because I just think I am on a day off from work or it’s the weekend.  It still has not permanently seeped in yet that I don’t actually work, but that is ok!  Things take time and hopefully as my life shifts I will just find a new “work” that I do and maybe keep a note telling me to write things down!

Top Shelf Pain

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Upgraded Headache

I admit that when I am in pain and I have to go to church or a meeting of anything important, I will put a lot of effort into my makeup.  At this point, I use Swarovski flat-backs to give a good 3D sparkle.  I have used up to three layers of under-eye concealer just to not look like I got punched in the eyes by lack of sleep.  I use enough foundation to secure a skyscraper and enough concealer to wipe away entire countries.  The I pick a vibrant blush and put it on my cheeks, forehead, tip of nose, and chin.  I blend it well, usually you can barely tell it’s there, but it allows me the pink “alive” look as I sometimes look like I have been sleeping for days (because I have). I use highlighter with reckless abandon; I need EVERYTHING to shine from some angle.

The last thing I choose is my lipstick and that is dependent on the colors I am wearing and how much I want to command attention.  I have about four shades of red that I love, a pink that is like bubble gum but looks great with Spring colors.  Purple for when I wear green.  Then all my special shades from just ‘sparkle’ to matte black.  I usually try to stay reasonable though as I do have to look professional more often than not when I bother to wear makeup.

Here’s the thing that people have a hard time grasping; I am doing it so that I can just feel better about the war in my body.  It has nothing to do with compliment fishing ot trying to outdo people.  I had people asking if I took clients?!  I have not done my makeup because I feel great.  People associate looks with health, and that is kinda natural, but it really isn’t any reason to say anything out loud.

People seem to believe that their thoughts on my looks or condition have some sort of positive affect on me and they just don’t.  I don’t care if you think I look nice and so I must be feeling better.  I don’t care if you think that I look like I am improving.  I have an agenda that does not include you nor your thoughts on anything.

Does that seem harsh?  Guess what?  Don’t care.  See, I have seen enough of people to know that the ones who really are looking out for me can see my tired eyes through the eye designs.  They can see my foot dragging no matter how well I try to hide it!  They ask me how I am doing or they just say hi and give me a hug.  They draw no more attention to me than any normal person wants.  On Sunday, yes sometimes I draw vines with flowers on my eyelids and I give myself golden freckles, I do it because it makes me smile at myself every time I see myself in the mirror or in a reflection.  It is actually great is it brightens up someone else’s day, but really, you don’t have to feel compelled to tell me and then directly correlate that to my health.

It is very possible that I am in the minority because I also cannot take a compliment.  Like, a gentleman at church asked me why I wear makeup when my face is naturally beautiful (his words, definitely not mine!!) and I asked him why men thought that they had the right to comment on how I choose to look?  I told him that he had a wife and SHE is who he can ask about makeup.  He said she doesn’t care about his opinion either.

Let it be a mystery.  Stop putting women, especially women with hidden illness, in the uncomfortable place of telling you to mind your own business.  Ask your sisters.  Ask your mom or wife.  If you get a sassy answer from them, DON’T ASK OTHER PEOPLE!  Find a different rabbit hole to dig down.  The importance of looks has been socially ingrained into our psyche and we can get very emotional if we really try to figure out why we are wearing Jazzberry lipgloss and not Hot Tart lip creme, you might open up some emotional scars, so just STOP!

Just in case you need some kind of answer, I will leave a few:

  • Because I am dehydrated and my skin looks like an arid wasteland.
  • Because I am in the point in my cycle where my face turns into an angry minefield of pus and devastation.
  • Because I FELT LIKE IT, WHY?!

Goodnight!

 

Have you tried-

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“Have you heard about-” “YES!”

I KNOW I have covered this topic before, but it is one that just keeps coming at me and so I will keep bringing it to the attention of all who dare to read on.

See, I have some cognition issues and memory loss, but I have not lost my (above average *ahem*) intelligence.  I am able to read Al Gore’s Internet like everyone else and I am often looking up studies and medical information.  I have heard about memory medications in testing.  I have heard about therapies being used to help with brain damage and PTSD.  I have heard about the new findings concerning how our gastro microbiome affects how we think when it is changed.

Chances are, unless you have Chiari or are in neurology, I know more about my body and what medical science has to say about it than you do.  Just like you know things concerning your body better than I do.

HOWEVER

Let’s get to the real problem here.  You somehow feel entitled to give me medical advice.  Somewhere in your lifetime, you gained the gall to tell people how they should care for themselves when you chose to not go into the medical field.

Now, I do have friends that are in the medical field in specialties that give them the proper background from which to draw and share information that might be beneficial to my health.  The thing is, they realize that many times, I need them to be my friend and NOT my doctor.  I need them to listen to how the pain affects me and tell me that they are there to listen to me.  If I do need to ask a question, I will, but they seem to understand that I have a team of doctors already working to help me.

Advice is usually appreciated only when asked.  Don’t be ‘that person’.  The one that I have been talking about the whole time!!!

*P.S.- ESSENTIAL OILS ARE NOT CURES!!!!