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.

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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!

Sister Warriors

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Chiari Strong Together

My sister and I have been through alot together and apart int the past 30-something years.  I would say the past 16 have been the most interesting as we raised a child together.  The things is that she is a foundational piece of my support system.  Without her I would be missing my external memory and my sounding board for crazy ideas.

In a world where you can be BFFS with you sister, we fit right in.  We act alike, we talk alike and we share some DNA.  Works for me.  Seriously though, when I talk about a support system I am talking about a group of people who have come together to help you weather your storm.No one knows how long the storm will be, but that is why you lay a foundation of solid people that can be depended on in the toughest situations.  Constipation.  If they can’t handle and help you when you have reached maximum constipation after brain surgery, you don’t need them in your life.  they should even care about small bouts of constipation.

Now of course support doesn’t rely solely on understanding and discussing hostile acts of my colon.  It’s being able to encourage and lift each other up.  Sometimes that means saying a kind word.  Sometimes that means going face to face with Colonel Colon and Artillery Anus.  Different people in my support system help me in many different ways.  My mom usually drives me around, but sometimes someone else in the circle can handle it so mom can rest or get something else accomplished.  It’s about working together so that nobody has to take the full force of the load of ridiculousness my life entails.

Reach out to the people who really show that they care.  Many people offer to help and never answer the phone.I KNOW it is DIFFICULT but allow people to help relieve stressors on your family.  I have a friend that takes my daughter to the movies sometimes.  My sister has kidnapped my child…sorry, the took my nappy kid.  Just kidding folks, it’s kinky and it is beautiful.  I am a little jealous.  I have great colors, but she has such thick hair that has a life of its own.  Mine looks like it died years ago and is haunting my head.  It just isn’t looking as good as I like it to and LOOK how far I have strayed from my original point.

Having a group of people to help keep an eye on me is comforting because I sleep through med alarms and forget a  lot of stuff.  I am living just fine and my family and I are learning how to deal with my issues so that I can still have a fulfilling life.  The goal is not to be taken care of, but looked after.  I can do plenty on my own.  There is plenty I cannot do, and we are discussing how I will deal with things when I get my own place.  I will get the roomba and the light handheld vacuum, I will pay extra for a heavy duty dishwasher so I don’t have to worry about it.  I want to buy a condo where there are trash chutes so I don’t have to walk far in the cold.  An indoor swimming pool would be great, but I am down for outdoor if it is heated.  It doesn’t have to be big or fancy, just able to live in and have my own space.  Where I can spend time caring for my support team when they visit me.

Anywho, reach out.  If you don’t find anyone then look online.  That is where people search to find someone with the same issue.  There are wonderful groups out there.  Just make sure you go somewhere reputable and that the people aren’t weird.  Some people just want to know about your health, like an obsession.  Creeps are everywhere, so be smart.

No Worries

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Days with no worries…

My life is a carefully planned and organized mess.  Looking at my phone, I have the same things happening almost every week and that is good because I have developed a certain expectation of how my week will go:

  • Sunday – Church
  • Monday – Helps Class
  • Tuesday – Therapy
  • Wednesday – Bible Study, Lunch, Church
  • Thursday – Kiddo At Class
  • Friday – Study for Monday
  • Saturday- Study for Wednesday

At times something is skipped or added, but this is the basic schedule outside of regular everyday stuff.  So, next week, I don’t have therapy.  That gives me a whole day at home to prepare for my walk!  Or sleep.  That is one of my favorite activities.

Every so often a day happens when there is no studying, no school, no class prep, no planned activity and I get to go outside into nature and just enjoy being outside.  It’s the most enjoyable for me when I can go without an expected return time.  When I can just go and spend hours among the wildlife and plants is when I feel the most normal.  I can still smell the plants and feel the breeze and it awakens a familiar feeling of peace and joy inside of me.  I used to take a lot more time to go do these things but since my surgery I don’t have the tolerance for hot or cold so I have to pick specific times to be out.

Still, the sacrifice is worth it because for a brief period of time I feel like me.  There are no worries or doctors or tests.  There is only nature and Michelle.

Our lives can be so hectic and are often spent inside the house or the car or a doctor office.  If you get the opportunity to spend time outside doing nothing, TAKE IT!  It is always best (in my opinion) if you can do it alone because other people tend to distract from true relaxation.  I don’t like to mix people and nature.  You never know who is going to go out with raspberry lip balm and get chased by giant bugs.  This person may not be a great companion in nature.  They likely are great to spend time watching anime with.

I feel that it is important to find something in your life that just allows you to relax.  Not the type of relaxing that comes with creating or hiking, I mean where you completely give your body a break, lay in a field, and enjoy the breeze without a care in the world.  You think about how awesome it is that you made it to this point and dream of ways to make it more awesome!  The most important thing is that you realize that it is healthy to take a break and appreciate the world around you.

It won’t fix your problems or take away your pain, but it helps keep all those feelings in perspective and gives you hope for the future.  I want everyone to have a hope that tomorrow is going to be better (despite all the signs) and even if it isn’t we can survive it and still keep our hope.  I want hope for everyone.

Survival Mode

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Not seeing much there…

In therapy this week, my doctor asked what my hopes and dreams were or my future ambitions.  I must admit, I was not prepared to answer such a question.  Hopes?  Dreams?  They died when my brother was murdered.  I laid them to rest and I don’t even visit their gravesites.

Ambition was always flexible.  I could work toward any goal as long as I was able to plan for it and stay on top of it.  Ambition has been in a vegetative state for two years.  It isn’t quite dead, but it’s hooked up to a lot of machines to keep it “alive”.

Now is about survival.  What do I have to do to make it through the next 12 hours? My phone will let me know when it is time for medicine, when to reorder an Rx, when to write in my journal, when to log my headaches, when to go to the doctor, where I parked the car, how to get from here to there, what my calories and nutrients for a day should be, when I have been sitting for too long, when to practice Italian.  The list goes on and on and on.  Basically, my phone told me to sit down and write this post.  It was time.

When life starts being that constrictive, it is hard to plan outside of that especially when you throw in the uncertainty of not knowing how you will feel any given day and for how long or will this time end up back at the hospital.

When I look at my future, I see a cloudy mass, dark with uncertainty.  Will I be able to go back to normal?  Will I degenerate? Will my memory come back?  Will I be able to work again?  Will I be able to afford a car someday?  My own house?  Nothing.  Out of a 15 specialist medical team, all of them are pointing to my brain as the culprit.  So, next I go to the Cleveland Clinic Lou Ruvo Center for Brain Health and pray that they can offer me a diagnosis so at least I know what I am up against.

So, I told her, I don’t see anything.  I don’t hope for anything anymore.  I just live to survive.  Maybe one day that will change and I will be able to enjoy the wold I live in and again dream of things and have hopes.  For now, I just have to take care of today, and that is ok.

One day at a time.

 

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What is Beauty?

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15 minute face mask, rise above the crap.

My life is a stressful place to be and so I try to take time multiple times a week to give myself a facemask.  It’s funny because the mask does all these wonderful things for my skin and it makes my skin feel sooooo luxurious, but it doesn’t really make me feel beautiful. Even with a headache I am choosing to take time to step away from all of the things that I spend my energy worrying about and I am going to focus that energy on myself.

When I give myself a footbath, I don’t take a book and I often don’t use my phone.  I just sit where I can look outside at the trees and sky and think about things that don’t even matter.  Things I wouldn’t normally take the time to consider.  Yes, my feel look and feel wonderful after a good soak and scrub and especially after I finish the pedicure.  That is the best part.  The beauty isn’t in my feet, they will get janky again, I promise you that.  The loveliness is in the time that I spend caring for myself.

I have questioned beauty a lot lately, I don’t feel beautiful unless I am completing the acts that we normally associate the outcome of beauty with.  It isn’t the make up, it is focusing that hard on my face for so long, it isn’t the nail polish, it is putting that care and effort into making them individual.

When I had a job and the funds, I felt beautiful leaving the nail salon or showing off that new haircut.  Now, I love painting my own nails and I have cut and dyed my own hair for 26 years.  It’s much more fun chopping it off now than showing it off the next day.

Maybe I have had beauty wrong my whole life.  Maybe beauty is the act and not the result.

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“I can’t believe it’s been a whole year!  I just got a promotion, what have you been doing?”                                     “Surviving!”

The world at large does not have a thorough understanding of recovering from brain surgery.  While their lives breeze by marked by accomplishments and milestones, my days are monotonous and almost indistinguishable from one another.  My memory started fading over a year ago, and I only have vague recollections of what has been going on in my life.  I have not achieved anything, and it makes for very awkward conversations.