Sleep Deprivation

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Sleep Deprivationhome

So, I have been blogging about sleep deprivation.  It was an experience that is nothing like living a full life 20 hours a day.  It is like living an eternity in 7 days.  Losing hours of sleep means losing track of some of my reality and I am becoming more OK with that.

Being away from home was difficult because on one hand it felt like we had just left the house.  On the other hand it felt like we were gone for months and the journey would never end.  My mom was the tether between the world I was comfortable with and this new place that was often uncomfortable.  I miss the overly sure part of myself, but I am glad that I have people on my side when I need them.

By the time the trip was over, I could have cared less about anything.  I just wanted to go home and sleep. I was tired in a way I had never experienced and everything annoyed me.  It took a good amount of time to get home.  Finally I could see my daughter.  I could put on comfortable clothes.  I could drink that good coffee.  The lack of sleep did not diminish my joy upon arriving home.

It did however allow me to sleep for a few days and things are returning to normal.  My head is killing me, school is happening, and I am just trying to keep up with life as it flies by!  I am thankful for my naps and my full night of sleep and for being with my family.  I hope that I don’t have to do anything like this again anytime soon.  I prefer the more boring life of therapies that help me get my mind and body useful again.  Now that I have the diagnosis, treatment can be coordinated and I can begin to get my life back on track.

Honestly, I have been home for seven days and I am still extremely tired.  I am resting, but the appointments have started and I have to try to make the most of my time.  I am still waiting to hear from SSDI, but how wonderful would it have been to have this diagnosis before having the hearing?!  Still, I hope that they see that I have spent this entire time trying to get back to work and right now it is not possible with my symptoms.  I am trying to not think about that as I head into the Fall season.  I am glad that I have direction for treatment.  It won’t cure me, but it will make my life a bit more tolerable and that is enough for right now.

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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.

Lies I Tell Myself: II

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Lies I tell myself: It is probably just a caffeine headache. I just need some coffee!!!

I really hate headaches.  They have become a normal part of my life and that is not the situation that anyone wants to be a regular part of life.  This is another lie I tell myself so that I can make it through a rough part of the morning.  Or afternoon…or night.  I tend to think that the focus on the warm drink is what allows me to get my thoughts off of the pain and lowers my anxiety.  Honestly, I could be making up my own science to help me get through this crazy situation.

This is the second (I think) in a series of lies that I tell myself so that I can at least feel like I am doing everything I can to help the headache.  I hold out the insane hope that one morning, I will drink the coffee and the headache will fade away like it used to before all of this ever began.  The thought of a bad caffeine headache is quite delightful.  A dreadful pain, but with a tasty cure.

I know that coffee will likely do nothing for my head except give me something to focus on an enjoy for a bit.  There is a certain freedom in enjoying something in spite of the pain.  I love the feeling of the warm coffee travelling to my tummy.  I live for that when I have any warm drink.

Even the tiniest pleasure should enjoy recognition.  I have always taken time to enjoy my coffee, but this idea extends beyond my favorite mug(s).  I am trying to learn to enjoy everything that isn’t painful or dangerous.  Trees are awesome.  I spend a lot of time enjoying them, usually while enjoying the rest of outside.  I enjoy the time when I am at the doctor and it’s just me and my mom in the room.  We don’t even have to talk.  I know one day it will be different.

If you happen to tell yourself lies, don’t beat yourself up over it.  Sometimes we have to have the hope that something, anything will get rid of the pain.  It it on gets us through the next fifteen minutes, we have made it a little further in the day and hopefully have gained enough relaxation to complete whatever task lies ahead.

If you don’t understand this, just be thankful.

Put That Coffee WHERE?!

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“I use Coffee Enemas to detox and relieve all types of pain…” Michellex2plus “While I relish the thought of coffee in every orifice, my brain sags out of my skull and I don’t think they use enough pressure to hose it back in there.” “No problem” (In Text Message) S “wow” M “I know”

I am by no means famous or well known on the internet.  I have focused most of my social media accounts on Chiari Malformation awareness and just preserving the essence of my experience since my memory is so poor.  The account that I probably use the most is my Instagram (FOLLOW ME: michellex2plus) and so it is where I tend to have the most interaction with people about Chiari.

I post about my headaches and without fail here come the Snake Oilers.  They tell me that their concoctions will not only rid me of my headache, but make my skin brighter, restore my soul, bury my skeletons, slim my waist, harvest my crops, improve digestion, restore circulation, align the planets and get mercury out of retrograde, thicken my hair, and make my nails grow.

I WANT TO BELIEVE ALL OF THIS!!!

The problem is that this is some person out there who saw a hashtag that somehow aligns with the product they have chosen to push and they don’t care that they might be derailing the actual healthcare of people.  They don’t care that there is no scientific proof that essential oils can fix Chiari Malformation.  They don’t care that being bombarded by false hope is disheartening and tiring after a while.  I have spent almost 3 years with awful headaches and there is no medication they have given me that stops them.  Yet, some person out there thinks that a coffee enema is going to get rid of my pain.  If that was really a thing, I would have done it already, as I am often desperate for pain relief.

To make matters worse, many of us with chronic pain are on a limited or fixed income and still there are people out there who are willing to take your little bit of extra cash in return for something that might help you feel good in some way but may not do what you were told it would.

I love essential oils.  I have one of those sonic vaporizers for the essential oil, and I often have something coming out of it.  Does it lighten my mood?  Sure!  Does it make me smile?  YES!  Does it take away any physical discomfort?  NO!  Have I had someone some to me touting the “healing powers” of essential oil?  Yes!  I tend to school these people on exactly why essential oil can not fix a brain herniation or intracranial pressure.  Then I let then know where they can learn more about Chiari Malformation and how they can actually help people.  Last, I block them.  I have done all I can and they need to get it together without me.

I have suffered.  I have cried out in agony.  I have plead for the pain to end however it has to.  I have sat as day after day ticks by and I lay in the same place drowning in the misery of a sea of hurt.  I WANT the easy answer.  I WANT the oil to take away my pain.  I WANT kale to make me whole.  I DEEPLY DESIRE the relief that spraying coffee up my hind-parts promises.

We live in reality folks!

Most people on the internet selling you promises aren’t properly schooled in herbal remedies and are not as familiar with plants and their healing properties as they claim.  Even if they are, you should be willing to do your own research, have a reasonable expectation (JUST LIKE WITH YOUR DOCTOR), and understand any risks associated with what you are taking into your body.

The road is long and there are not always answers for us.  I have to tell myself this multiple times a week.  Shortcuts won’t always lead to the finish line.  Sometimes we will just have to tough it out.

 

Plans

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Most people make plans for the summer and I suppose I do too.  Turns out, my plans are not always fun but they are quite necessary.  Like jobs, medical appointments don’t take the summer off so I am trying to enjoy the time I have around these visits.  The downside is that seeing specialists means that I scheduled most of these appointments in the Spring and they take precedence over every other event that crops up during the summer months.

Birthday party?  Not on a Friday, I have Music Therapy every Friday and it is tiring.  Anything on a Tuesday is forbidden since I have my regular therapy and I also use it as a doctor appointment day.  Sunday is church, family, and volunteer day.  We are now down to 4 days that aren’t even in a row.

Now, because I finally received my accident settlement, I was able to put together a week where I had a staycation on The Strip and I managed to live that good vacation life for 8 days.  It was wonderful to be able to take that break because although I will spend the summer being tested and evaluated, I won’t have any answers for a while.  I will still be in a state of limbo for a bit and that is just stressful.

Luckily, we have a pool and cable and air conditioning here at the house.  So, I think that while I can’t make it out of town or to all of the events, I still come out on top.  I don’t actually have to leave to enjoy a smoothie while floating on the water.  I am learning that every situation has a better viewpoint than I give it credit for.  I am a little jealous of people with the means and ability to do all of the things, but I am surrounded at home by the things people go out to find!  Fancy coffee?  Got it!  Hot tub?  Got it!  High-speed internet?  Got it!  Plus an awesome family is included!

I may be at home, but home is like a home away from home but still at home.

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.

Self Love Powers, GO!

Anime stick Michelle

I call upon my self-care kit!

Ya’ll know 2018 is the year of self-care.  So, you see, I try to take time out of every day to to do something nice for myself.  Sometimes it’s a good foot bath or a nice nail job.  Other days, it’s a face mask and drinking coffee while listening to some nice music.

None of these things give me superpowers or make me young and beautiful again, but they remind me that I am worth spending time on myself. I am happy that I will at least be hydrated and have smooth skin and good smelling feet.  What else do I really need in life at this point?  I can’t get anything, so I may as well care for what I have!

Even these blogs help me feel better about the life I am leading and how I spend my time.  I don’t keep my thoughts for long, so I draw them and write them down.  I will forget this and come across it later and think about how silly I am!  It is worth it for the sake of knowing in the future that I have been working harder to get myself to a better place!

Please, take the time to do something you love.  Something that benefits you and no one else.  Fill yourself up with your love so you have plenty to pour out on other people.

Also, check out The Life Of A Music Monkey