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!!

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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!

I want to do things…

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The things I wanted to do today!

After the gnarley headache, the nausea is the worst symptom I experience on the constant basis.  It is usually low level, but if the weather changes or the headache increases, nausea will shoot up and become THE ONLY THING THAT MATTERS!  My daughter is hungry? NAUSEA!  Front door unlocked? NAUSEA! House on fire? NAUSEA! LET ME LIVE!!!!

For most people it is a feeling they may have for a few hours or days, a couple weeks if you are pregnant (unless you are me, then 40 weeks) but for me it has been over two years and really, I am sick of it (no pun intended, but good for me).  It’s that feeling of sick RIGHT before you actually throw up but I just don’t always throw up.  I pray that I won’t as it makes for a terrible headache/vomit cycle that can get out of control quickly.

The worst is when I have a day planned and NAUSEA hits me.  It is paralyzing.  You don’t move unless it is to a more laying down position.  I lay there thinking about the things I was going to do.  Some things are only available for a time like dinner with friends or sales, some things I can do later, but the worst things are the ones I have planned with my daughter because she gets the short end of the stick.  She often ends up supplying my ginger ale and ice and ice packs.

I want to be able to do the things that I plan but I am at the mercy of a body that is kind of confused right now.  Most days I get through it, I ignore it, I get ginger or drink ginger ale, but some days, nothing but meds can cut through the nausea and the meds come with their own set of problems.

So, if you know me and I tell you I just don’t feel good, that is actually code for, I could throw up at any moment.  I am just being polite.

My Life Clock

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My Life Clock

One of the scariest things to learn to deal with after surgery was that I was no longer on my “schedule” but I now lived according to my body’s needs and doctor appointments.  I tried desperately to cling to some type of schedule (I still do, like a fool) but it was in vain.  Remember having to go to a doctor appointment and then wanting to take my sister out for lunch.  By the time our drinks got there my body was slunched in the booth crying out in pain.  We had to get the food to go.  I felt so bad.  I wanted to take her to a nice restaurant and my body was not having it that day.

Now, there are certain things I to on schedule like take my meds.  I have alarms set so that I don’t forget.  I spend enough time each day drinking coffee because so far that is the only thing that stimulates peristalsis so I can get things moving in the morning. (poop, if you haven’t figured it out.)

Sometimes I will be having a lively conversation and then I need to take a nap now.  Not in a few minutes, not later, right this second I must get to my CPAP and sleep.  If I don’t, I become crabby, like a mix between an angry 2 year old and a crotchety 87 year old.  I am not pleasant at all.  God bless my family for putting up with this mess of a woman.

Often the clock changes as the needs of my body change.  I have been having a lot of headaches recently and no doctor appointments, so there are a lot more naps on the clock and reallys, a lot more blogs as I try to get ahead in preparation for my visit to the Cleveland Clinic.  I suppose that by the time this publishes, I will have already visited and will be drawing stories about that.

Love your body.  I mean take care of it.  Listen to it.  Follow it’s instructions (unless they are murderous, then see a therapist).  It will share it’s needs with you if you are willing to listen and give it a chance to tell you.  Remember that it’s needs will change and grow over time and that is normal.  That is life.

Bills, bills, bills…

Chiari Car Accident Starter Kit.

When I was rear-ended in 2014, I thought that it would be a few trips to the chiropractor and I would be fine.  Here I sit, two and a half years later, and I am wondering how this got so expensive.  I have run up well over $200 thousand dollars in bills and after speaking with my lawyer today, I recieved their final bill!  

We often hear about personal injury lawsuits that pay out millions of dollars.  Really, most people are doing well to get their bills paid after the fact.  I haven’t worked in 15 months!  If it weren’t for the kindness of family and friends, I wouldn’t even be able to male it through the process of suing someone.  

Make no mistake, I am not in this for the money.  I was willing to settle for nine thousand dollars in 2015.  Glad I didn’t.  I just want to be able to live my life and take care of my daughter.  Hopefully, after all of this, I will be able to. 

After the Conversation Ends…

Chiarialone

Me having coffee with all the people who understand me.

 

A year after the surgery, and I have come to several conclusions:

1. Only my family sees what I go through every day.  They see me in pain, when I am angry, sad, they see the outbursts, the cloudy days, the restlessness, and yet even they do not truly understand what I go through.  Nor would I ever want them to.  If given the choice, I would gladly take the pain for any one of them

2. I have about five friends who know the inner details of my life, and are my friends anyway.  My life can be so gross at times.  Just think, your brain controls EVERYTHING YOUR BODY DOES!!!  Even the stuff that you prefer to keep to yourself behind the bathroom door.

3. Pain is NOT A CONTEST!!!  I do not understand the pain that cancer patients go through.  They don’t understand the pain that amputees go through.  And they don’t understand the pain that I go through.  (I make the exception for those who have Chiari and survived cancer via amputation, or something similar.)  We each have a difficult situation that we have to navigate and chances are there is physical and emotional pain that must be dealt with.  We need to respect the journey of those we meet.

4. My pain/condition/malformation is NOT  a result of God hating on me.  CHURCH!  YOU NEED TO STOP THIS MESS!  My pain is not a reflection of how of feels about me or how I feel about God.  Every major player in the Bible had issues.  More importantly, all of them died, so even if Chiari kills me, I am just doing the same thing as my forefathers!

5. My physical condition is not representative of who I am as a person.  When a doctor sees me, I am a Patient.  To my daughter, I am Mom.  To my mom I am Daughter.  To my sister, I am Sister.  To the client, I am the Designer.  To the listener, I am the Musician.  To the diner, I am the Chef.  To the random person who sees me suffering from a debilitating headache, I am disabled.  Yeah.  What if I told you that I am ALL OF THESE THINGS AND THEN SOME?!  Like the fine diamond I tell myself I am, I have many facets, I am well rounded, and quite brilliant if I may say so.  And my carrots?  The food of the gods.

6. I am deathly afraid of meeting someone I like.  Before, I felt like I had so much other stuff going for me.  Now, I don’t work, I don’t go to school, and I am gifted with the headache that keeps on giving.  I have no self confidence because I dread explaining myself and my condition AGAIN to ANOTHER person.  I haven’t even gotten to the part where I break down when they decide they can’t deal with such a problematic relationship.  I also am aware that I have developed irrational fears.  Working on that.  (Please don’t leave me a comment telling me how what I feel is wrong and what you think  is better because of whatever.  My feelings are just as valid as yours.  Thanks!)

7. I may never be taken as seriously as someone with diabetes or major physical injury.  Somehow, seeing someone testing their blood sugar is enough evidence to be able to understand their situation.  Seeing the scars left from a horrible accident are reassuring that the person is actually in pain, as you can see the evidence.  I get no courtesy in this respect.  I get told that I must feel better because I look great!  They are oblivious to the 4 layers of concealer that I put on to hide the fact I haven’t slept well in a week because of a headache.  If I don’t wear the makeup, then #4 applies.  It’s a lose/lose kind of thing.

8. I would not trade this experience for anything.  I don’t like the situations I find myself in.  I still have scars on my head from when they removed some skin for an EEG.  I hate that I don’t know when or how long my head will hurt.  I hate that my daughter now has a mom who can’t remember what day of the week it is without a phone.  I hate that I can’t remember words sometimes and I feel stupid.  That said, I am very lucky.  Within 18 months of my car accident I was imaged, diagnosed, and underwent surgery for a condition that routinely stumps medical teams who are unfamiliar with it.  I have an extremely supportive family. I would have never made it through this situation alone.  I also now know what it is like to not really carry stress from day to day.  Because my memory is very unstable I wake up every morning with a clear slate.  That is a pretty amazing feeling.  I am forced to live today.  I can’t really plan for the future because I don’t know how I will feel and I can’t remember much of the past.  All I have is right now.  I wish I had known how to live this way years ago.  Even better, I will be able to use my experiences to speak to other people and spread awareness.  And that isn’t so bad.