Sleep Deprivation

Featured

wp-15657330838246056207115838259266.png

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.

Advertisements

Searing Pain Of Chiari

Featured

wp-1563955015040777806220828503375.png

Searing pain of Chiari. Brain Science Fair! “I built a volcano into her head!

There is no pain that I have experienced that is comparable to the pain of a full-on Chiari headache.  I am always looking for a way to describe my pain so that not an ounce of hurt is lost on the listener or reader.  There are times it feels like the back of my head is going to blow out and I imagine that this is what it would look like if it happened.  Dignified, like a good science fair project.  Not a mess of gore or horror, but an amazing example of nature out of man’s control causing pain and not really caring.

Sometimes it just hurts and I am just trying to get through the day.

Chiari Comfort

Featured

wp-15607602273928865192589527573832.png

Chiari Comfort. Look! It has pockets! (spring hair fading, comfy onesie, pocket for snacks)

In high school I was voted best dressed.  I knew the cuts, the fashion, the season, and I looked great.  Now, some years later, I find myself looking not for the perfect silhouette, but for the pockets!  I also love jersey knit.  No zippers? Yes! No snaps? Thank you! No buttons?? YES PLEASE!!

I have traded my mid-rise slacks for leggings and tights.  I gave up buttoned shirts for tank tops.  I gave up cocktail dresses for onesies.  I am not spending my days at work or performing so I have embraced clothing that I never would have worn before.  I have become COMFY!

I am that person that goes shopping in pajamas.  Why? I like wearing pajamas.  I will take a shower and put on clean pajamas before I go out.  I believe that the important thing is that I pay for what I pick up and I am fully clothed.

Chances are, the store is the only place I am going and I refuse to wear zippers and buttons unless I am required to look like I am functional.  So, when I go to church, I wear the buttons and the jewelry and the accessories because I will be spending a minute there, I may go out to eat, and I like to film on Sunday because I already look decent.

When I go to the doctor, I get dressed in “normal” clothes.  Unfortunately, I no longer drive so I don’t really go out anymore.  I used to enjoy getting dressed and taking myself out but I don’t have the money or energy.  I could find a ride, but I am kind of a homebody now, so I have traded in my fierce for fluff and I don’t regret it.  I can still get dressed up for any occasion, I can do makeup, I can do so many things…IF I FEEL LIKE IT!

I would say that the world should leave disabled people alone about how we dress, but really, leave everyone alone.  We all have our tastes and needs and I need to be comfortable.

If you have received flack about how you are dressed when you go to grab some eggs, just remember, they aren’t paying your bills or buying your clothes so don’t give them the attention they demand of you.  You got up, you went out, and you are taking care of business!

Go forth, in your pj’s.

Tough Pills

Featured

wp-15606301633098124016392026619213.png

Chiari A tough pill to swallow.

So, one of the most interesting things I have learned is that while Chiari is not the cause of all of my issues, it makes all of them a little worse.  However, the interesting thing is that until the Chiari became symptomatic, I have very few serious health issues.  I had an injured knee that is still functioning on grace and prayer, I also had the issues with my deviated septum and the fallout of needing my tonsils removed.  Otherwise, I was active, healthy, and living my life.

After the initial diagnosis, I had a few restrictions.  Seventeen days later at the neurosurgeon when the diagnosis was confirmed and surgery was scheduled, we went through a long list of things I would probably never enjoy again.  Here are a few of those things:

  • horseback riding
  • weight lifting
  • climbing
  • kickboxing
  • sing opera

Abysmal!

However, once I began to heal, I began to hope.  I was getting stronger everyday, I got a gym membership.  My memory was failing but I had enough family and technology to keep things together.  Then I started getting weak on my left side and from there, much has gone wrong.

The seizures have the largest impact on my life right now as they are quite uncomfortable and they are the source of the memory outage.  at first the seizures were small enough to where I was beginning to doubt my doctor.  Then my stepdad saw me have one in my sleep, and I had one in the pool a few days later.  Now I was not allowed to swim, drive, shower in the house alone, and a few other things.

Ended up in the ER with pulled muscles from my ribs to my hip on the left side.  The night seizures are violent.  They always end in pain, confusion, and long periods of dead sleep.

How do we come back to Chiari?  The headaches.  When the headaches are worse the seizures are worse.  The motion of the seizures can make the headache worse.  It is a cycle I really don’t wish to see play out.  We cannot say what is causing the seizures until I get my study done and maybe at that time they will be able to figure out what started them.  However, if they can’t, I still have to move forward. So much of what has happened and what is happening aggravates symptoms that I live with almost every day.  My herniating tonsils lead the charge against my body and whatever is left up there is still angry about losing to the while-coats.  I did not realize that people lived in pain until I lived in pain.  It is quite different than any other pain.  I know other pains will go away, even if they are acute or last a few days or weeks.

The headache sits.  At times heavy and at times light.  It is difficult to accept that this might always be how it is.  I may be in that percentage of people who get worse after decompression surgery and it isn’t anyone’s fault, it is just how it turned out.  I have spent the past two years in therapy trying to figure how to accept is and it is truly a ginormous pill to swallow when I have to say that we really have a few words and no idea how they are connected.  I just know that in the end, whatever happen will probably disturb my headache and I won’t like it but I will likely survive (based on my survival of every previous incident).

I hope that if you are going through a process that seems impossible, try to make sure you have really accepted the range of possible outcomes.  It is almost impossible to move on in life when we fight the truth, even when it is painful and it hurts.  In the end, the truth is what it is whether it is accepted or not.  It is harder to deal with a lie and heal and come to a new normal.

Sometimes you will have to open wide, take the life medicine, and drink a LOT of water afterward!

Lies I tell Myself: VIII

Featured

wp-15587369006957786471499537955157.png

Lies I tell myself “I can climb three flights of stairs…”

I have spent a lifetime being active and while I have never done a proper pushup, I have always loved climbing.  Stairs, furniture, mountains, vehicles were all game.  There is a part of me inside that I call “Michelle Unlimited” or MU and she is unaware that I have lost the physical ability to do a lot of things.  She also forgets that things are hot or weigh too much.

MU still likes to do all of the things and I suffer for it.  In the MU mindset, I began shoveling out front and pulling up sprinkler lines.  I think spent two days recovering because I am not supposed to be shoveling dirt in the sun OR doing any type of landscape work.  As soon as I felt better, I tried to dig up a bush for transplant but was caught before I could really get anything done.  Of course I know better, but somehow in the heat of the moment I am able to convince myself that I will be fine if I just use proper form or drink water or whatever lie I am willing to believe so I can feel like my old self again.

One area that I seem to struggle with is stairs.  I grew up in a house with stairs and lived in one for a good portion of my life.  My apartments were upstairs, office is upstairs, everything I like is upstairs.  However, stairs are not the friends they used to be.

MU does not care.

Using a cane has made stairs even more of an issue because my natural inclination is to take the stairs and it’s just getting more difficult because I am tired.  It is a ‘tired’ that is becoming all consuming and I feel like I am drowning in reality.  The stairs seem to make things real, but I am more often floating up a building in the elevator now because I lack the strength to get up the stairs safely and I then have to take a few minutes and bring my heart rate down.

I keep telling myself that I can do it, but I just can’t right now.  Since I now travel with someone else, I am usually corralled to the elevator so that I won’t make the attempt at the stairs.  We know that my seizures seem to be aggravated by activity and the more strenuous the worse the seizures.   It is a little upsetting when something as simple as stairs is taken away and what used to just be useful architecture is now a barrier.  A thing that once held no meaning now represents a failure of my body.

Of course this is something that I am dealing with in therapy and I am trying to stop letting ability of my body and mind define who I am and dictate what I can accomplish.  Reading back over this I am telling myself that it is ok to be upset about losing some ability, but the focus should really be put back into how do I overcome or compensate for this?  I obviously can take elevators.  I realize that I am blessed to be in a city with the strictest building codes, so access for disability is almost everywhere.  I have the tools at home to maybe work a little harder to build up my strength to get up and down stairs, but until I go see the cardiologist, I will just take it easy.  If there is an issue, we have to figure it out first, and honestly, not having to walk up stairs is something that in time, I will get used to if it comes to that.

So much of this journey is having hope but being reasonable if everything goes wrong.  Having a belief system that I consistently study and read and having a support system that is large and loving is what keeps me going.  My family has known for months that I am getting slower and slower on the stairs, now I literally have to sneak up stairs if I want to walk up some.  The only stairs we have at home now lead into the pool or spa and I am not allowed to use either of those without someone there…and I need help getting up the stairs as there is no railing.  (Our pool was built for fun, not children or the disabilities that would later come.)

Maybe for a while I will just tell myself that I can take the stairs but I choose to take the elevator.  Then it feels like my choice, and sometimes the feeling is what gets me through the hard times.  MU just has to find a less energetic way of being awesome.

Chiari Bladder

Featured

wp-15563183762572115551261018935695.png

“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”.

Lies I Tell Myself: VII

Featured

wp-15496077613165443406107846285098.png

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!!

Featured

wp-1549607239339371776078638270631.png

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

Featured

wp-15496068086162458294596837155152.png

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

Featured

wp-15497754148136353307670728145542.png

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

Featured

wp-15496053735675370791437289674557.png

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-

Featured

wp-15494365568433974925584995652433.png

“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!!!!

Neurologist And Neurological Mess

Featured

wp-15494353610181843466865533528539.png

To the Neurologist!

I love my regular neurologist, but I FINALLY got an appointment to see my memory neurologist and I couldn’t be happier.  I called on February 4 and got the choice for an appointment on the 11th or in April.  Trust me, it was not a hard decision.  I had to reschedule another doctor appointment, but it is worth getting to see this man who I have prayed so hard for.  I and really excited to see what he has planned for my next steps.

Going to the doctor is usually not for a fun purpose, but I am just hoping for a productive outcome.  I know that we have a ways to go, but I hope that we have made clear progress in some direction that he can work with.  God willing, we will start on the road to Cleveland and see some super specialized doctors.

Be thankful if you have the opportunity to see doctors and get the care you need.  I know my visits to this particular doctor run about $600, so be thankful for every insurance and discount…I KNOW I am.  I would never be able to afford this care on my own.  Like I have done, use every option and benefit available to you to better your health.  As long as it is in your budget, go to physical therapy twice a week and do the exercises at home.  It helps with just daily mobility and the program is tailored to your body by someone who had to do some schooling.  See a dietitian or nutritionist to help make reasonable meal and food choices that will assist with specific health goals.

I am not saying to abuse the system, any system, for your gain, but if you need help doing your hair, physical therapy helps in a longer term way.  Using your body in a healthy way and eating well can help keep you off a lot of medications later, so take care of yourself and use the resources available to you.  This includes mental health.  It is OK to see a therapist.  They can be very helpful and they aren’t always long term.

Last, if you think something strange is going on in your body, talk to your doctor until they listen (that’s how I got brain surgery!!) because sometimes it takes some convincing, but eventually, you will get the right doctor and things will begin to fall into place for you.  I could have suffered serious damage to my spine had I let the pain continue.  I was lucky that it debilitated me and I was forced to go to the doctor.  Use your resources.  That $10 visit cost about $150K in hospital and surgeon fees, but my insurance at the time paid 100% for hospitalized, necessary surgery.

So, That’s my story.  Expect an update (outside of normal release days) about what happened!

Lies I Tell Myself: V

Featured

wp-15457709415363367057734226565949.png

Eggnog Lies

If I had only listened to myself, I would not be on the floor, writhing in agony.  I was at the store, and I saw it there.  Staring at me through the glass door.  The eggnog section.  It is only there for a few weeks and EVERY year I buy some.  EVERY year I am miserable because of it.

See, I am extremely lactose intolerant.  Drinking milk is like playing with matches in the forest during a dry summer on a windy day.  I know I’m gonna blow, but I do it anyway.

I get out my nice goblet, pour the thick, spiced liquid until my cup is full, and I tell myself that ‘this year, I will only have one glass’ and I think everything will be fine.  Turns out, one glass is WAY too much and then the bloating begins.  Almost immediately, my stomach filled with air that seems to be some sort of weird, sciency thing.

Next is at least an hour of misery as the angry eggnog bubble passed though every curve of my intestines until it builds to one of the greatest pains a human can experience from a glass of eggnog.

The rest of the story is as old as time.  After the nightmare is over, I swear off the eggnog because I know that it is the source of my pain.  I tell myself that this will NEVER happen again and maybe THAT is the lie!?

Of course, the year rolls around and it get cold outside again and I look into the dairy case and there it is in all its glory, eggnog.  I tell myself that unlike LAST YEAR, I am only going to have one small cup (just like I did last year) and I will be fine (which I was NOT last year).

It’s a weird thing about me, I guess.  Not too weird though, because apparently moy mom does the SAME THING!

I guess we’ll just try again next year!

Dance, Dance

Featured

wp-15456651801853143633591557983809.png

Chiari Dancer

In August I started dancing and here we are in December and things hurt.  They hurt all over.  I started physical therapy much later than I had hoped, but now look, I managed to make it through three services of the Christmas program and I am just so thankful that I didn’t make any super horrible mistakes.

So, a lot of people at my church know I deal with problems and they treated me like some miracle who grew my legs back and danced.  Really, I irritated my worse knee, pulled a quad, herniated a disc, and did something to my toe.  It took a lot of work, but it was no miracle.

I didn’t have any solo parts and nothing very complicated.  Any adult who cared enough to pay attention and follow instructions could have done it.  People get amazed at the wrong things.  I practiced and came to practice, it only makes sense that I am able to do what was practiced.  My body is a jerk, I am not immobile.

Maybe I am looking into this to hard, but I just want to be able to do things without everyone commenting on how proud they are and how amazing it is that I can do human things.  It is frustrating.  This is not the kind of attention I like getting.  I want to be the only one on the stage, singing, looking beautiful as I purr out a smooth melancholy ballad.  That is NOT where I am at in life right now, so, I prefer some anonymity.

I joined the dance troupe because I needed to feel connected to my body.  It has been everything I expected and I am surprised at some of my own weaknesses, but this gives me a venue to correct them and be in control of myself again.  I want to have my body respond how I wish for it to and to hopefully restore some of the grace I have lost in the recent years.  Often I wonder if this is the wrong reason to join a ministry, but I needed the ministry to minister to me through the movement of my own body.  Watching other people was not enough.

Here Is where I would normally say how much I love it, but I just can’t.  I am not a dancer.  I do not have the body nor the grace of a dancer.  I have two left feet and get lost in music.  I don’t like the last minute changes.  I have no idea what my motivation is when I am on stage.  It is painful all over my body.  I have so many reasons that I don’t like dance.  I think it has convinced me to stick with my own ministry.

The challenge is priceless though.  Can I make it through ten months of dance?  One full season?  Will I still feel the same way or will my feelings for dance evolve?  So many questions we have to ask ourselves!  I guess we will have to see.  I will try to keep updates posted.

The Log Of Memory

Featured

wp-15457702183326789985834508367668.png

Memory Log

So, I am in speech therapy again doing neuro rehab and I am just the most fun patient.  After discovering I am having some throat trouble, we got down to the business of remembering.

She discussed the difference between ‘internal’ and ‘external’ memory strategies.  I already do many from having family members who have access to my schedule and location and emergency measures and ways to try to remember names.  So, she is stoked that I am already all about recording my life, but she suggested a memory log.

The memory log is a special item that I have probably explained at some point but for the people in the back, a memory log is where I manually record notes on the things I do throughout the day.  I review this at night to help lock in memories.  I can also look at it again the next morning.  at the end of the week, I read through the week to help reinforce any memories that remain.

I have a beautiful book for my log and a very nice pen, but right now, everything is over and I am not doing anything but physical therapy and sleeping and eating, so I don’t know how boring these first few days will be.  The difficult part is remembering that I have the book with me and to make the notes.  No one wants to look like the one who is keeping tabs on everyone else.

I am not quite sure how much detail to go into.  I assume I will find a happy medium as time passes.  Currently, the biggest issue is remembering to write down what I am up to, but I know that will come with time.

Memory loss is not something I thought I would have to contend with before my child was well into adulthood.  It makes the world so much more interesting but a lot scarier.  It is like living in a video game or a movie.  My brain perceives or believes things at times that are impossible, but it completely forgets even well-documented events.  The brain is so amazing and wonderful.  I hope that even if I forget what is happening around me that I am able to understand the function of the brain and the malfunction of my own brain.  I never want to remain ignorant of how my health is coming along.

For now, I want to do everything I can to help myself and while I do my part, my neurologist can figure out the mechanism of the memory loss so we can get to the source.  For now, I will just record life and hope that it helps in the future.

Hope is what I strive for.  I hope I get better.  I hope others get better.  I hope we become better at patient management so that smaller issues don’t turn into life-long maladies.  When my PCP tells me that I should take supplements before looking into my diet and exercise, I have to wonder how many other people are stuck not getting help because they don’t know how to navigate the medical system.  If it is more than me then it is too many.

Right now I am in the fire learning how people get burned by insurance and doctors and eventually, I will share my inside knowledge with the world and we will institute changes to help head-trauma victims.  There are so many areas, but one issue at a time for now.

As I write this, it is Christmas.

Merry Christmas.

If you don’t celebrate Christmas, happy Tuesday!

Chiari Dance Lesson #1

Featured

wp-15442562569298019243455481136029.png

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: IV

Featured

wp-15382855980362439324074467827385.png

Lies I tell myself: It isn’t THAT bad! I will be fine. “So this is what it is like to be dying a full life!”

It can be difficult to really KNOW whether the pain is normal or not when dealing with neurological issues.  It doesn’t help that pain is personal even in the temporal sense.  Five years ago, I WOULD NOT have been able to handle this level of constant headache.  I would have thought I was dying.  Today, it hurts, but I am just thankful I can function.

The problem is that sometimes I want to do more and I may enjoy it, but the next day (or few weeks) are filled with misery that can worsen as it flares up.  I HAVE noticed that removing a lot of the grains from my diet (under doctor supervision) my flareups don’t last as long as they used to, and I think it just has to do with foods that can increase inflammatory activity in the body, in my case, the brain.

So, while I pay a lot of attention to my body, maybe I need to change my mindset on my limitations so that I can still have a good time and accomplish things without taxing my body and putting myself at risk for injury or falling (my left leg will stop functioning if overstimulated).  I know I shouldn’t lift things over a certain weight, but I hate feeling like I always need help.  Is my pride really worth my health, though?  No, I don’t think so.  I have gotten better about asking for help, but I still try to do things I know I probably shouldn’t.  I just don’t want to feel un-able.  I want to be able.

The moral of this story is that pride made me dance like it’s 1999 at my daughter’s Sweet Sixteen and I hurt for days!  I had fun, and thank goodness she doesn’t have another big party for at least two years, so I should have recovered by then!  Don’t let this happen to you.  Don’t do it the Michelle way, be safe and just side to side as anything you break down may not be able to put back together and if you drop it like it’s hot, it will stay there until it is cold and someone will have to scrape you up!  Listen to the little pains and know the signs of being tired.  Then, do the right thing.  That is what I’m gonna start doing.  Best part, we can start right now and do some self care.

Feeling Hot, Hot, Hot!

Featured

wp-1542003054019203951948023432413.png

Chiari Burns

I have been cooking for the better part of 30 years.  From simple things like toast and how to make butter to cakes and cookies to candies and roasts and pies.  I learned how to make almost everything from scratch from bread to pasta to egg noodles, sauces and stocks and desserts.

As I learned how to cook various foods and use different tools, I was taught the safety rules of everything.  How to properly handle sharp and hot things were constant drilled into me from a child until I was a teen and began working in a restaurant.  I had to be safe because I used bread knives (which can cut you) and an extremely hot espresso machine.

Not a week ago I was boiling pasta and I just grabbed the pot handle, luckily I caught myself.  A day or so later, I was going to check the headlamp in our truck and I turned it on.  Now, I have worked on cars since before I had a child, and I know better, but with my right hand I grabbed the wiring harness that connected into the bulb, and with my left hand I GRABBED THE BULB!  Then, with my right hand I juggled the wiring harness to see if it was causing the sporadic outages until I felt a thousand suns on my left hand.  I opened my fingers and there was skin burned unto the bulb, so it was definitely getting changed.  I turned off the truck and the lights and went and got an ice pack.  Ever curious, I took my three screaming fingers and the ice pack back out to the tuck and grabbed the bulb housing (where I SHOULD have grabbed) and examined the coils in the glass.  They weren’t perfectly aligned and some look like they somehow got turned around.  Made sense, it probably wasn’t getting a solid connection with twisted coils.  I examined the rest of the bulbs with the lights off and put the housings back together so we could go to the store and get the bulbs, then I replaced them later.

However, this is a serious issue that seems to keep coming up, especially in the kitchen.  I can take something out of the oven, take the oven mitts off and turn around and grab that dish.  I bought an aloe vera plant because I am a menace to myself.  I grab the handles of iron skillets that I KNOW have been on the stove cooking and it’s like I have no thought about it at all.  This is one of the reasons I have slowed down cooking is because I don’t want to really hurt myself or anyone who may be in the kitchen with me, so I try to wait for days when I feel good and someone can still be there with me to keep an eye on me.  I think of it as another small dignity I have given up for the good of myself and those around me.

This process of going through memory loss and all that we are doing to try to preserve what is left is difficult and we all have had to make sacrifices that really were awful, but needed to get to get this far.  We all plan to keep making them until we have answers and nothing else has to be given up!

It is Time Thirty ‘o’ Clock

Featured

wp-15407793642414807599583319853441.png

What is time anyway?

I am pretty sure I have talked about it.  Maybe not as much on here as on my other blog, but being unable to create stable, flowing memories has a curious effect on my ability to place things in time.  I have a difficult time putting memories in order or even knowing if something was a few days, weeks, or months ago.

This is something that is lightly addressed by my doctors as I suspect there is very little they can do for me in that respect.  I am not creating mile markers in time.  I can still tell what time of year it is by the sun, but what does that even mean in the context of real life?  I have to live by a schedule that I loved at some point but now I feel like it is a burden.  What if my body does not FEEL like getting up and going to another appointment.

Doesn’t matter because I have to go anyway.  I often am waiting 2-6 months for appointments, so when they come around, I go even if I feel like death is nigh.  The rate of descent news from these visits is probably around 40% because most of my doctors are pointing their fingers at my brain and my neuros are scratching their heads because I am not a textbook case of someone who has chiari and a normal decompression, I had problems before I ever came in, I had already felt the boggy breath of the reaper as my brain exploded into my neck.  Am I rambling?  Sorry!

In the end the appointments are necessary to make sure that the doctors, my family, and I can be on the same page and collectively understand what our treatment options and expectations are.  Not having a regular schedule beyond church and doctors and naps is probably detrimental to my health.  We are working on it.  It is a little harder now that I can’t drive.  However, know that you are not the only person going through this.  If you have ha a major trauma and you can’t get it together, THIS IS YOUR GRACELAND!  I feel you.  I too am tired.  I too had med-head.  I too need to take 2, sometimes 3 naps a day.

If you can’t figure out why it is so hard to get it together, I can be the first to introduce you to brain injury,  Either by book or by force.  No one, not even these prominent doctors can truly understand how the brain and mind function, however they seem to be able to spot when it is not functioning well. You may think many people fake their symptoms, but you’d be surprised at the number of improperly treated brain injuries.  (This can either be from patient refusal or from under trained doctor who cannot spot the signs of abnormal cognitive behaviour and speech and they just give them a mental health stamp and never look at the brain as the cause).

That’s not true! You yell at me!?  I kept going back to the doctor for 8 months telling them something was wrong, and they told me I was depressed and sent me to a psychologist.  I went to that psychologist for SIX WEEKS trying to figure out the root of my hypochondria before I was told my cerebellar tonsils had herniated out of my head and into my neck and I needed immediate surgery based on my symptoms,,,you know, the ones the other doctors told me were in my head.  Technically they were, just they were now starting to fall out!

Especially in out intelligence we must consider how to humbly deal with the unknown.  The last three years of my life have remained largely unknown to me.  My doctor says that it won’t come back.  It is lost forever.  The people I have met, the things I have done, washed away as I open my eyes from sleep.  waking up every day, checking my phone to see the day and month.  My life is like a mouse treadmill right now.  It isn’t really going anywhere and the scenery doesn’t change.  I hope that this part of my life gets more interesting, sooner.

Lies I Tell Myself: III

Featured

wp-15382851768278198957995122123160.png

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!!

Featured

wp-15398446578304833432988836489688.png

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.

Chiari Faces: Mask Of The Day!

Featured

wp-15378071360057900135498468558153.png

Chiari Faces: Lovely Lady, I Can Do It, So Fun, I’m Good, Playful, The Truth

*This is the viewpoint of Michelle. If you take something in here personally, look up “conviction”.  I really just want to inform people and I sometimes just say it in a very direct way.  Stay real.

 

There is nothing like waking up and being able to go through your whole day without having to be fake.  Now, when I say fake, I mean doing anything that is not based off of the true emotion that I feel at any given time.

If I have bothered to get up and put on an entire face of makeup, it is because I look so bad that people will ask me if I am sick (or if I know I look terrible) and no one wants that.  So, I get up early on Sunday and spend 2-3 hours doing my hair and makeup (a lot of rest breaks) so I can at least feel good about the way I look.

Of course, that means that I am cured.

WHAT?!?

Yes, this is what people think.  I use a good layer of primer so that they can’t see how uneven my skin is when I put on my liquid foundation.  Then I blend a bit and add concealer because sometimes my skin hates me and gets blotches, and don’t forget about the under eye concealer that drowns out the dark circles that often grace my face.  Pink blush on cheeks, nose, forehead, and chin because I need to look like I have decent blood circulation.  Blend.  Blend.  Blend. Contour nose, cheeks and jawline because my weight keeps fluctuating and I need to look like I have some angles.  Blend.  Blend.  Blend.  All of this goes down my neck to my chest so I can be the same color and not have to worry about my face being so bright.  Then bronzer on bony structures.  Blend.  Blend.  Blend.  Then all of the eye makeup and lie-brows, which is where the most effort is put in as far as coming up with a theme and creativity.

As a rule, when someone comments on how “healthy” I look, I thank them for their kind words and let them know that it is really just makeup.  I don’t want people to get the idea that there is nothing wrong with me, but I also don’t want to look half dead.  I can blame a lot of it on myself because I do many wild and free designs with my eyes.  Still, I would love to live in a world that doesn’t pressure me to look one way or another.  That doesn’t make me feel good because I “look healthy”, and it doesn’t make me feel bad for “looking like I actually feel”.  Unfortunately, I think humans, like other animals, take a lot of information from visual clues to draw conclusions, so I am kinda part of the problem I guess.

I doubt that a day is coming where I will be able to go do things in my true ugly, splotchy-faced, racoon-eyed form and no one will take notice.  For goodness sake, though, just say “Hi” and move on (unless you have something to talk about) if you know the person is chronically ill.  You will greatly reduce your risk of saying something they may cry about later.

My Head Says, “Hello!”

Featured

wp-15370555129055615128722469331489.png

Hi Michelle!  How is your head?

It may be PETTY, but I am going here anyway.  Most people I know are aware that I have had brain surgery.  Many know I suffer headaches and other symptoms still.  Some actually understand the surgery and issues.  A golden few ‘get it’ and they are my favorite folks. (I want so badly to be sorry, but I am not.)

So, prior to my whole head thing, people would say things like, “Hey Michelle, how are you?” or “How are you doing, Michelle?” like normal folk do.  There has been a change in the greeting and I am going to be honest, it drives me to the point of unfathomable ire because it turns me into the very thing that I am struggling with.

“Hey Michelle!  How is your head?”

Uh, small and hurting, but what about the whole rest of my being?  You know, my emotions, my heart, my mental status, and every other part that effectively sums up “MICHELLE” is stripped away and all that is left is a head with a name.  I am more than just my head.  I know people WANT to hear that my head is doing fine, that allows them to infer that I am also fine.  The only answer I have left to give is that I am still alive; My head is still there and as far as we know, my brain is still in it.  THEN I AM THE BAD GUY!  When they were just trying to be nice and see how I was doing and you know, I shouldn’t pay that close attention to the words people use because sometimes they speak so carelessly…but THAT is the problem, isn’t it?

People speak carelessly.  Not choosing their words to comfort one another, but using words that betray their true desire; to get the skinny on someone so that they can either be thankful to God or whatever that person happens to believe in because there was a healing, or to question the validity of one’s faith or illness.

Then I told people I had balance issues, they thought nothing of it.  We’re getting old is what everyone likes to say.  When they see me with a cane because I fell or do not feel steady, then somehow my issue can be taken seriously.  Now that I have a medical aid, I am much more believable.  Now the focus is magically pulled back and a fuller picture can be seen.  Weird how that works.

If I come back without the cane, I am fine again.  Often, people do not take the time to consider the real situation of another person.  So, they will ask what is wrong, but they don’t really want to know if it isn’t good or gossip-worthy.

In closing, I want to say that if I am of concern to you, ask about ME.  If you are that concerned about my head, ask my neurologist.  Choose your words to interact honestly because I feel when there is callousness and fakery in your words, but I usually just allow them to hurt me because I am used to pain.

Chiari Insomnia

Featured

wp-15341363377367787512918568730785.png

Chiari Insomnia: The headache that never sleeps

My idea of a “real” headache has changed drastically since 2015 when I experienced the first of many unrealistic headaches.  The headaches I used to experience would be welcome friends today.  What pain meds am I on for it?  Glad you asked!  None!!

Right now, I deal with the pain through sheer determination.  The worst happens to be when I need to sleep.  I can be so tired, by whole body is ready for the sweet release of REM sleep and the feeling of a hot metal bit boring through my brain keeps me right on the edge of sleep.  Where any movement is greeted with a sledgehammer to the back of the head.  I feel like I am being held hostage and tortured by my kamikaze brain. It doesn’t care if we both go, as long as I hurt.

The morning after a night of this insanity is the freshest Hell on Earth.  People are annoying for no reason.  It’s hot.  The coffee tastes off.   My clothes don’t fit.  My thoughts are slurred.  Everything that comes out of someone’s mouth is oer stupid than the last thing I heard.  It devolves quickly into a mess that I care not to be involved with.

So, how do I cope with this kind of headache AND not kill every human?  Easy!  First, if I have been up all night, I cancel all of my appointments (if possible).  I can handle one appointment for a short period of time.  Otherwise, I limit my interactions to my family members (so no phone calls, texts, or responding on social media).  I can be honest with my family and tell them that I am not having a good day and I am irritated and annoyed and I am having trouble controlling it.  These folks will listen to what I am saying and give me the space I need to nap or watch cartoons, or just sit and be mad.

Unfortunately, we cannot always control our symptoms, even if we are doing everything right.  We still have the power (in many cases) to choose where we go and who we interact with.  I also understand that everyone doesn’t have a super-supportive family like I do, so it may be harder to find your voice or set your foot down.  This is my way but surely there are several other ways to handle post-insomnia irritation.

I ALWAYS recommend therapy because it can be a great way to get your feelings into the air so you can rationally think about how to deal with them with the guidance of a professional.  There are plenty of resources online to help deal with anger and non-medical means of pain control.

In the end, you may have episodes where you just get out of hand.  It is difficult, but grab a tall glass of milk while you eat crow.  Apologize and try to explain why you behaved in an unseemly manner.  Most people understand intolerable pain.  It may not qualify as “your level” of pain, but everyone knows their worst pain.  I am sure that someone out there will say there is no need to apologize.  I wholly agree, but there is nothing wrong with making the first step to reconciliation, especially when it is over something that can easily be forgiven and laughed at.

This life isn’t what we asked for and it probably isn’t what we want, but we all have a role to play in life and for some of us it is to be an example, a beacon, and an advocate.  Once you realize what you need, you will be able to help others obtain the same thing.

Also, can I sleep now?  Is this enough words?

Music Therapy

Featured

wp-15341374320686702347500639191010.png

Music

There are many things that challenge me in life right now.  It has been a long road figuring out what I can and can’t do about certain situations.  I CAN call and check the status of a referral, even ask them to expedite it.  I CAN NOT circumvent any part of their process and having an attitude with them with NOT get things done faster.  So, it is empowering to know that I can keep track of the process.

However, I have some remaining frustration because I only have so much control over the process.  So, my neurologist referred me to Music Therapy.  I consider myself a musician.  I sing, I understand Music Theory, I write, but I am not at a professional level and right now I pretty much just enjoy listening to music and playing my ukulele.  So, when the therapist was explaining to me that we were going to listen to music and not offer any views about the musical structure or type of music, we were going to focus on how the music made me feel and why.  I was quite skeptical.

Although I didn’t get to finish, being a student of music caused me to become very critical of music.  Not in the negative way, but to listen to the instrumentation, the rhythm, the back-beat, the notes in cracks, and all sorts of musical methods, so I was not convinced that this was going to be a successful therapy.  HOWEVER, I remain open to all of my doctors’ suggestions and try them because I am willing to do anything if it means I will get better.

I have been in Music therapy for three months.   I love it!  So, for the curious, I will spill the beans on what happens in some of my sessions.

We go into a little office either with a desk or with really comfortable chairs.  It depends on what she has planned for that session.  If we go with the desk then she will do a guided meditation with very neutral background music that does not follow the common harmonic progressions that we are used to hearing.  It is the type of meditation that allows you to focus on the physical feelings in your body and focus on each part and relax it.  Then, you think of a place that make you feel happy or loved or comforted, kinda depends on what you are going through.  When you think of this place, you look around, in your mind you focus on the things in this place that you find beautiful or comforting and you impress that feeling of calm in your head.  Then, you get to draw the place!  Once it was a forest, dappled with sunlight.  Once it was a banana split.  I don’t question the meaning of these things because that is not the point.  I enjoy both things and they make me happy and comfort me.

Sometimes we go into the room with comfy chairs.  In this room we do a different, more challenging type of guided meditation.  Often it is dealing with a specific anxiety and sort of untangling it and allowing me to look at the situation without distraction.  What this does specifically for me is helps me see what I have the ability to do and what is outside of my ability.  I can then act on the things that need attention and I do not feel guilty about things I have no control over.  It is really great.

One of my favorite exercises is lyrical analysis.  We don’t stick to any particular genre of music, she chooses music based on lyrics.  Remember, it is not a time to spend judging the musical composition of the piece, UNLESS it is in conjunction with part of the lyrical structure.  We talk about how the words are used in the song and if I can or cannot relate to it.  I am always asked what phrase catches my my attention the most and why.  It has exposed me to music that I would have never listened to on my own and I have bought a few of the songs.

The most important thing we did (in my opinion) is on our second visit she helped me create several playlists that I can use to help shift my mood when I am upset or frustrated.  It is a way to acknowledge how you feel and then proactively improve your mood by listening to music that is gradually uplifting.  At this point, I can just pick and choose a song that matches my mood, one that feels comforting, and one that makes me feel energetic.  It is a great tool for preparing for situations that I expect to be anxiety inducing and I use it all of the time now.

I must admit that the worst part of music therapy is that it is not an ongoing type of therapy.  We work in four week blocks and then we do an assessment.  When I started we met weekly and now we are meeting every two weeks.  Eventually, we may only meet during times of medical and severe emotional crisis.  I am very thankful that my therapist is the kind, gentle soul that she is.  I am glad that I can describe my feelings to her using musical terms and she gets it.

I am glad that the art therapies are becoming more common in the treatment of chronic illness because everyone needs a way to express themselves and music touches us in ways that can be indescribable but understood.  I encourage everyone who has the ability to take advantage of alternative therapies in conjunction with the more traditional treatments and therapies.  You might be as skeptical as I was, but you might end up advocating for more access because of how helpful it was.  Should you try it and it doesn’t work for you, don’t give up, try something different.  We can’t always get rid of the pain or sickness, but we can change our perspective.  It’s VERY DIFFICULT, but it IS possible!

Put That Coffee WHERE?!

Featured

wp-15301119546978223489755616098748.png

“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.

 

Summer Melting

Featured

wp-15307429016513109521212917225265.png

Las Vegas Summer!  I am melting

 

Living in the desert has some very distinct disadvantages for me right now.  I have lived out here (for the most part) since 1996 and coming from New Jersey, I love the winters here.  The summer was always awesome too, until I had the brain surgery.  I had the surgery in December and I remember going outside in the mornings and being warm while my sister was bundled up.  After a short walk around the courtyard pushing the walker, I would come back inside and have to take off all excess clothing.  She told me I kept it freezing in the room.

I don’t remember much of any of the previous summers, but TODAY was hot enough to melt my thoughts (around 115).  I rapidly lose energy and focus in the heat so I tend to plan my events so the I am not outside for a long time.  I have to have air conditioning in a vehicle or a building.  I can overheat from doing my hair.  Or getting dressed.  It feels like such a horrible weakness to have in the desert.

I try to remember that I am blessed to have refuge that not only has AC but also cable, food, and a pool.  It is easy to focus on what I have lost: I have the lost the ability to endure extreme heat.  As I learn my life lessons, the positive things that have remained or increased have begun to outweigh the negative things.  In reality not much has changed except my perspective.  Turns out that was the most important change that could be made.

Still, at times I find myself in the broiler that is outside and I am amazed that the human body can withstand such brutal temperatures.  People have lived in the desert for many years in all kinds of deserts.  I am so thankful that I had the opportunity to endure the heat and work in it, and hike in it, and all other manner or activities I did.  I enjoyed those times so much and I had an awesome tan!  Now, I am thankful that my life affords me so much air conditioning, cold water, and frozen treats.  I have what I need and in this world that is a miracle.

If you find yourself in a situation that is not awesome, take the time to consider the good things.  Now, this is not what you should do if the situation is dangerous or abusive, but if you are just in a funk about life or a thing, take time to consider the things that you have that seem inconsequential but make life so much more convenient and comfortable.  If this exercise doesn’t even come close to touching your issue, I recommend talking to someone (from a trusted friend to a therapist) who can help you get the assistance you need to live a happier life.

Should you see or talk to someone who is in a terrible funk about something, let them vent and blow off steam.  Many times people just need to direct their excess energy outward and then once they let everything out they can think a little more rationally.  Never undervalue someone’s feelings or their current reality.  Each of us has a unique life experience and each person has something that they struggle with.  Some people have multiple things.  Lending a caring ear and validating that the person has a complaint (even if you don’t agree) allows a person to feel heard.  I often spot my own flaws in thinking when I vent.  Hearing my thoughts out loud helps me to make sense of my feelings.

I wish more people could understand that my body does not tolerate heat well.  I don’t want to be the only person sitting inside at gatherings.  I don’t want to be the one who avoids get-togethers because they are outdoors and I can’t do over 75 degrees.  I hate that temperature is something that influences everything from household comfort to vacation destinations.  I am not trying to be the center of attention or bail out on my friends.  I know I LOOK fine, but I am not OK.  I have symptoms that control most of my life, from walking to the going to the restroom.  Life for me is a little crazy.  So, if I am going to take the time to get ready to go out with friends, it is because I have been guaranteed a nice cool place to rest.

Seasonal Body

Featured

wp-1528810843590891734348038145584.png

My Summer Body is Snowman Shaped.

I tried on my swimsuit from last year.  I have not gotten smaller, that is for sure.  A stick in my side is my weight right now.  Not because I want my summer body (which has been missing for AT LEAST 15 years, put out an APB) but because I can feel the excess weight on my knees and ankles.  Still, I won’t lie, I would love to have my awesome body back!

So, recently I took a Functional Capacity Evaluation.  Normally they are used for worker’s comp or for return to work after an injury to make sure that the employee is sufficiently healed and strengthened to safely do the work they were doing.  In my case we are using it as a baseline.  I obviously can’t go back to being a warehouse worker, however I was happy to learn that physically I am able to do some kinds of work.

More importantly, it has given me a baseline to use to put together a workout that is good for tackling the areas that I really need to get stronger.  The test is laid out in such a way that I can easily read it and pull information to use, so I think that is probably what I will do.

More importantly, I want to send out the message that it is ok to want to change your body into something healthier.  It is ok to be happy with your body just the way it is.  It is ok to make little or great changes as long as you talk to a doctor first and do it safely.  There are so many messages out there about how you you should look, but focus on how you want to feel.  That will get you much more satisfaction from whichever route you choose.  Know that I am standing (sometimes sitting) behind you, rooting for you and your continued success!

Splitting Headache

Featured

wp-15288100445824231140645069375868.png

It can be hard to accurately describe one of my headaches to someone who has never endured an injury that resulted in severe nerve pain.  In the spirit of spreading awareness, I would like to share some of the descriptors that I use when dealing with brain pain:

  • feels like my brain is being pulled out of the back of my head
  • feels like someone is shoving my brain into my skull
  • feels like a slow-motion explosion is happening (for hours) in my head
  • feels like a ball of magma at the base of my skull dripping electric magma onto my spine
  • feels like someone shoved rebar up my spine and impaled my head and is pouring concrete in my shoulders
  • feels like someone is blowing a balloon up in my head
  • feels like being hit by a baseball bat/2×4/pickaxe/sledgehammer/grenade/lead pipe at random intervals
  • feels like the hand of God pushing my head onto my shoulders
  • feels like my brain is leaking into my neck

I could go on and on.  There is not a pain that I can’t accurately describe using colorful language.  At times I use more color than at others.  I could never use just one set of words to describe the pain that graces my grey matter as it continually is morphing from one misery to another, afflicting different body systems as it crushes my faith in endorphins.

If you can’t imagine describing your pain in this kind of detail, count yourself among the blessed.  Hopefully that means you have never had to experience this pain.  If you have a list similar to mine, I offer my condolences.  There is no one who should have to deal with pain all or most of the time.  Unfortunately this is not how the world works and some people live with their pain as a constant companion.

So, if you run into someone or you know someone who has chronic pain, don’t even pretend to understand the level of hurt they endure.  As much pain as I endure, I don’t act like I understand the pain of others, I only know my own pain.  Just offer your support and comfort.  Chances are, any advice you have to offer is terrible or they have tried it and don’t go on a quest to fix them.  Just support and love.  Trust that you probably don’t know more than their doctors, so no medical advice!  Just support and love.  You would be amazed how encouraging friendship can be.

A Fuzzy Friend

Featured

wp-1528269842954..jpg

I am human and I love dogs.  I have been this way my whole life, but right now, I am not in a situation that allows me to have pets.  That is probably good for now, considering I may not have the energy to properly care for a pup.  That doesn’t staunch my desire at all, though.

I think that there is a part of me that wants to take care of someone else.  I want to be the caregiver instead of the cared for.  I suppose I would love to see myself in the stronger roles in life.  Still, this isn’t the right time, so my dream will remain a dream.

So many people I know with chronic illness or pain have a fuzzy companion and I think part of it is also just having a companion that never tires of your voice and loves snuggles.  Humans are wonderful, but sometimes my neediness is too much for them.  I suppose a dog would enjoy me talking to them since they would have my full attention.

Forging relationships and trust with animals has always been easy for me and I just miss having that comfort.  As a child life was unpredictable and often frightening, but there was something about the dog that was reassuring.  He  offered and reciprocated love and compassion.  A love untainted by annoyance or anger.  Dogs are such precious gifts.  Cats are too, but I need more attention and affection than a cat is often willing to give.

Either way, I have to wait until I get situated in my own place again.  Then I can go down to the pound and rescue a doggie!

I am no doctor, nor am I a scientist, but I can tell you that your support system can also include the animals that help bring you peace and calm.  People are a wonderful blessing and a valuable resource when it comes to major life changes, but they are human and no person can take on everything.  Having a pet that helps to cheer you up or make you feel loved and safe helps bring balance to many lives and I think in the future I will benefit from this.  For now though, I am going to dream of the lil guy who will someday get 30% of my snuggles and love!

Plans

Featured

wp-1528269317804..jpg

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.

Pain Bomb

Featured

wp-1525833846916..jpg

I have been waiting for you to have a good day! (Pain Bomb)

Recently I have had the joyous occasion to have several days on little to no headache.  I still have the nausea and pressure in my head, ringing in my ears, but that weighty headache let up.  I simply can’t help but think that my brain is plotting its revenge on my for not entertaining the normal amount of pain.  For me it has been nice to go to church and not fake smile (much) and enjoy a day of pedicures and shopping, even dress up to go to therapy.  It hasn’t even really mattered that other things hurt, the headache subsided.

Sure as the sun will rise, I will get another headache.  Probably sooner than later, but hopefully later because life is pretty nice without that burden.  Now, I know this probably sounds kinda wild coming from a Christian as I should probably be believing that God is going to miraculously heal me.  If course I believe He can.  Still, if I am more valuable to the world in this state of being, then I will use it to spread awareness and help other people.

I suppose my point is that anyone can be afflicted and we shouldn’t use religion to brush away common sense or medical treatments.  We are each free to make our decisions, but we have no right to dangle carrots in the faces of suffering people.  Religion is not a baton to beat someone who is down.  The ultimate goal should be to love and encourage one another.  Most importantly, to listen to one another so we can now what they are feeling.

I know when I am feeling a headache coming on.  No one has the right to question that, or my faith, or anything.  I have spoken to so many people who have walked away from church or organizations because they were not heard.  People spread their own ideas of how you can be healed or what you are doing wrong and it feels terrible to be seen as someone who isn’t even helping herself.  I hate it.  I know other people endure it and probably hate it too.  Just know, it is ok to educate people and to walk away if they choose not to learn.  It is ok to stop someone mid-sentence and let them know they are too far across a line already.  It is ok to stand up for yourself and straight out tell people exactly where they are messing up.  You are not inferior to anyone, so you are not required to stay and listen to nonsense.

You know your body, and if it is showing signs of being overworked or tired, listen to it, not to people.  These are the same people who will complain about their own back when you ask them for piggy-back rides because you are tired or in pain. They want the best for you but they don’t know so just shut them down and tune them out.  It’s healthy and they can maybe learn about you with the added bonus of being quiet.

If you are the one scratching you head and mumbling about how you are just trying to be helpful, just relax.  The most helpful thing you can do is let your friend who is hurting talk and don’t act like you know more about their condition than they do.  Be a friend, not a doctor.  We know your intentions are good, but your degree in anything but neurology disqualifies you from giving cound medical advice to someone who has had brain surgery.

I know it seems harsh, but the reality is, being up front with someone in the beginning is easier than trying to fix it later.  If you have a worthy relationship, this will not harm it, but it will make it better because you will understand each other more.  We should grow in our relationships, and that can hurt, but it is worth it!!

All this being said, I feel the telltale heaviness inside of my head that precedes a headache.  I expect I will wake up with one but I hope that is not the case.  If it is though, I have had an awesome few days and I can live with that.

Stage 7: Acceptance

Featured

grief8

WE MADE IT!  At least in blog form (right??)!

This is the last step in all kinds of grief (to the best of my knowledge at the time of writing this) and in my *PERSONAL* opinion it can be the most difficult.  See, I am not really at this step yet with what I am going through.  Maybe some things I have come to accept, but as a whole, nope.

So how do I know how hard it can be?  My brother was murdered when I was 18, I was stuck in my grief for about 15 years.  I got through all of the rest of it, but I had to be able to accept a few facts before I could move forward emotionally:

  • My brother was murdered 2 days before my birthday in an extremely violent manner.
  • There was nothing I could have done to prevent it or save him.
  • I can not bring him back.
  • I can not turn back time.
  • The future we planned will NEVER come to pass.
  • I did not die that day, it just felt that way.

That is only six things.  I lost myself for a long time trying to wrap my head around those six things.  That is a long time for six things.

With medical issues, I expect it to take time to come to acceptance of all that has gone on and may never end.  It isn’t as final as death.  It can be a lifetime of being in multiple stages of mourning my losses, however, the goal is to spend just as much time celebrating the wins.  The positive attitude is what is going to keep me getting through each day until I can accept all that my body has to offer, good or bad.

If you have been blessed to make it to this stage you deserve a standing ovation.  I can’t imagine what you have gone through to get here, but I do hope that you spread encouragement to those who are in earlier stages of grief and can’t seem to move forward.  We look to you as a beacon of hope to us all; that we can learn to accept everything that has happened to us and live a quality life without dragging the weight of loss around.

 

I just want to thank everyone who read all of these posts, or even just this one.  My goal is to spread awareness about Chiari Malformation and whatever else I can help be noticed for the community of people who aren’t “normal” in the brain, body, or both.  We may look nice and act proper, but we often suffer behind closed doors or even in public when someone must make a comment about “how” we are.  We are people with feelings, family, friends, bills, pain, love, humor, thoughts, ideas, opinions, style, and so much more.  Some of us have to figure out all of that all over again, but we appreciate the people out there cheering us on and encouraging us to do more than we ever thought possible.

Again, the article I got this from is here and I used it as a basis for my drawings and for this idea in general.  Let’s talk about out mental health so we can be healthy.  Grief is healthy when completed and not stalled.  If you are having trouble with loss, talk to your PCP or therapist, or someone in your support system.  There are a lot of ways that help can be accessed and we need to use the avenues that have been opened to us so we can help ourselves and the future generations.  No Shame!

I’m Trippin’!

Featured

wp-1522532906340..jpg

The moment I realize my leg stopped working.

One of the issues that follows me in life is the sudden ceasing of my leg’s functionality.  I can just be standing there and it will just stop working.  More often it is when I am turning while walking.  My body just cuts off contact to a limb and boom, I have fallen.  It happened at church one day and I was so embarrassed because people saw, nevermind that I hurt my butt and arm.

This is just one of my medical mysteries and as time goes on, it is just becoming a part of my life.  I love the idea that I am now going to a brain health clinic and they know all of the different disciplines in neurology and are not afraid to use them.  They also aren’t afraid to say that there is the possibility that this will never be solved.

I suppose I have come to a place in my journey where that isn’t as scary to me as it was before.  I am figuring out what my limitations are and with the new therapies I will be going to, I may see some improvement in my quality of life.  In the end, I want to be able to enjoy my life and this place seems like that is their end goal; to bring quality back to life.

So, remember that you are not your illness and that there is joy to be found even on the days filled with pain and despair.  You might have something going on that causes you to be embarrassed because you can’t control it.  It is ok to have a multitude of feelings about it including lots of bad feelings.  That is normal.  At some point, if you are able, face those fears and ignore the faces and reactions of other people.  Eventually, you may learn to just laugh at yourself and accept that in some way you will never fit the “normal” standard.

It’s also ok if you don’t want to show the world your private life and so I can respect trying to minimize the issue and make it unnoticeable in most cases.  However you choose to handle it is fine as long as you deal with it.  Don’t let it be a hindrance to you in pursuing your goals and dreams.  Just be open to being creative because you might have to make some adjustments on how you achieve your goals, but you can do it.

Stage 6: Reevaluation Of Life, Roles, And Goals

Featured

grief6

I feel like I am at this stage in most places but I am not fully here yet.  I do not yet have a definitive answer about my memory or some of my physical issues, so it is hard to set up rock solid goals at this point or know what to plan for in life.  Therapy has helped me learn to see this is a different way though.

The important thing I had to understand is that I am not defined by my abilities.  This is still hard to swallow some days, but it is important because if I feel worthless or useless, then life isn’t really worth living.  I am neither worthless nor useless, I simply have had to learn to integrate other tools into my life to help me.  As I go through the process of reevaluating my life, I am more concerned with people than things, quality than quantity, and love above all.  So, since I have value that I can add to the world, what role will I play to do that?

First, I am a mom.  I am not the best mom in the world (probably).  I forget a lot.  Still, my daughter is my heart and I want to be the best mom that I can be for her.  I love her to pieces, but my memory isn’t strong enough to keep her on track at school.  So my whole family helps me.  Now, “Mom” is a little different, so the role I play as primary parent has changed.  We get through it.

I am a minister at my church.  I have had to change how I do things there so that I can still be effective and of service to the church.  I don’t mingle as much as I would like to because people will hug me too tight or be wearing too much perfume, but I try to make sure that I call and text and keep track of people so they know I am thinking about them.  I still plan funerals, but I always make sure that I get everything double-checked.  I have had to shift some of my responsibilities, but the only role that got taken away was ‘worker’.  I like the role of being a provider, but even that has to take a back burner for now because in its place I have to be a patient.  That is almost a full time job and it is more work than one would think to juggle doctor appointments.

Goals have also changed drastically.  I had hoped to graduate with my Bachelor’s Degree in Music Therapy.  Now I go see a music therapist.  When it all came crashing down and I felt like I had nothing left the goals disappeared.  My means for reaching the goals I had set were gone.  Setting new goals without knowing what I can and can’t do is hard.  Again, therapy came to the rescue.  Reevaluating goals in THIS case means figuring out how I want to feel about my role in my treatment.  It is my goal to be an active participant in every step of my treatment and to advocate for my treatment.  Beyond this, I want to be an advocate for Chiari Malformation and Mental Illness.  A house?  Who knows?!  I need to get well first, that’s my goal.

This is an exhilarating place to be because hope is finally on the horizon.  I can’t make out its exact shape yet, but there is something there worth striving for after all this time of feeling helpless and astray.  I think this stage will probably last a while.  As I learn new information I am becoming more familiar with how to reevaluate all of these things because this process will take time and I have to remember to keep my mind flexible enough to find ways to overcome the obstacles that seem insurmountable.

If this is where you are, CONGRATULATIONS!  You have made it very far in a process that so many people lose themselves in.  Grief should never be the destination, but it is a journey to be respected, explored, and then left behind to draw wisdom from.  I imagine other people might be in this place for a while too because it takes time to establish your new role in life and the goals you wish to achieve.  It can take a lot of experiences and thinking to reevaluate life and to gain a new yet comfortable perspective and establish a new normalcy.

Definitely take you time with this stage as it will develop your new foundations and enjoy the freedom of creating a routine and lifestyle that work for you.  In time, you will pirouette to the last stage where you will find the solid footing you have been seeking.

Stage 5: Loss Of Self and Confusion

Featured

grief5

All of those things I was depressed about and had anxieties over?  They have manifested into many questions about how I will define myself in the future.  With the bitter portion mostly cleaned out I am left with pieces of myself that don’t seem to be who I was.

I picture it like broken glass that spent time being smoothed by sand and time.  So many abrasive feelings had to come out and the changed the pieces of me that were left.  Time has left the glass warped and changed.  None of the pieces fit back together like I remember.  I often feel like I am living in someone else’s body.  Really, I have to internalize the idea that I am free to choose who and what I want to be within my limits.  However, I have to stop being scared to be something.

I am afraid of being broken again.  I have put myself back together so many times, but this has been the hardest journey of my life.  This is the one that seriously made me question the value of living in pain.  I still struggle with that question when the pain is very bad.  At that moment, I am a person who likely can’t even feed herself.  Is this who I will be?

I struggle with wondering what I will be able to do to earn an income or if the issues I have render me disabled, what will I do with myself?  Right now these are possibilities of who I may become.  That’s scary stuff.  I have always acted and done things KNOWING who I was.  I am not the same lady from a few years ago.  I have lost some physical ability and sometimes my brain goes on the fritz, but I have gained wisdom and patience so I don’t even approach things the same way.  So does that make me untrue to myself?  Why do I hold such allegiance to my former self?

She commanded power and respect.  She was not meek and kind.  Not really forgiving or tactful.  I don’t feel strong life that anymore.  I don’t feel like a fearsome woman with laser focus on what I want.  I just want everyone to love each other and be nice and thoughtful and respect my personal space.  Who am I?

I am underdeveloped right now.  My whole life has been altered and I am being created with my new life.  Piece by piece, day by day, trial by trial.

What keeps me so hopeful is that the change is taking place.  It is a long process, but I am moving forward and I am sure after I work out some more anxieties and other issues, I will be able to see who and what I am being crafted into and what my purpose is.

Should you find yourself on this stage, nothing will feel familiar. You might have to improvise a dance, but you may learn that you had a skill you were unaware of.  This stage is frightening and the house is empty except for the shadow of your former self peering at you from off-stage.  I just tell myself, I can’t dance like you (old me) anymore, I have a new dance, and that’s ok!

This stage can be scary but it opens you up to lay the groundwork for healthy recovery or living.  You deserve to ask yourself the questions and you can try to figure it out yourself or seek professional help for dealing with this confusing stage.  You will strip your emotions and idea of self to the core and from here you will spin onto the the next stage in this progression.

Stage 4: Anxiety And Depression

Featured

grief4

Was there ever a more perfect pair?  In my personal experience, depression digs the rut and anxiety makes you afraid to get out.  I have spent my life defining myself by my ability to accomplish.  The accomplishments themselves were not nearly as important as the ability to do it.  I COULD work on a car, I COULD landscape a yard, I COULD clean a pool, I COULD take 9 classes and work and volunteer and be a mom all at the same time.

As the realizations about my mental, cognitive, and physical status began to sink in, I felt like I sank into the earth.  Not able to do the things I was used to being able to do, I no longer felt useful.  The things I love became things I didn’t want to talk about or hear about.

I got tired of hearing that my friends were getting married, buying houses, going on vacations, living their best lives (*through my personal lens, which was very out of focus*) and here I was dealing with headaches, unable to use the bathroom normally, and unable to get through the day without multiple naps.

It was like the blackness that swallowed me in anger left me bitter and depressed and unable to see value in myself.  Then my eyes were veiled in bitterness and I saw value in nothing anymore.  Making it to the point where I felt like I was just existing was the lowest place for me.  Just the disappointment of opening my eyes everyday and coming back to the realization the ‘this is my life’ was changing my thought pattern and things were getting dark in my mind.  I couldn’t fix anything going on, so how was life worth it anymore?  So, I decided to seek help and get a psychologist and psychiatrist.

If intervention had waited longer, I might not have made it.

Interestingly enough, my psychologist focused on my anxiety.  If I was depressed about something I could get specific about, then she would turn to the anxieties surrounding it.  I have (as of writing this) been in therapy for 10 months and the one thing I always try to carry with me from therapy is that I am prone to try to repair and repair instead of looking for a new solution or viewpoint.  I am anxious to know if my health issues are going to be permanent but if they are, so what?  I have to learn to live with them.  This is obviously over-simplified, but I am always willing to at least try the methods and tools my therapist gives me to help look at my thoughts from multiple angles.

One way I do that is by writing.  If I am very anxious about something I will write it down and read it to myself and imagine one of my friends wrote it to me for advice.  Seems silly, but it works for me because I often feel like other people deserve better than I do, so it helps me put my thoughts into a more realistic perspective.  I deserve to be happy or safe or cared for just like any and everybody else.

Still, I have plenty to work on in therapy and I would not say I am totally out of this neck of the woods.  As my treatments change and we test and get answers, I will have other woes and fears.

Many people don’t realize that you can go through this whole grief process with every symptom (I have about 17) and after every disappointing specialist (I have about 14) because each new thing takes something else away that you now must mourn.  The feelings overlap and mix and can be overwhelming.  My support system and my medical team all keep a close eye on my depression and anxiety because I won’t be able to improve if I lose hope.

The worst anxiety I have is that I will have these symptoms forever.  Headache and nausea for the next 20 years is an unbearable thought.  However, I currently temper it by telling myself that I have made it this far without answers and whatever happens I have my family and my faith and I can cross some bridges when I get there.  I only have to worry about my headache today.  Tomorrow will take care of itself.

I am not saying these are the universal experiences of anxiety and depression.  I only know what I go through.  However you’re feeling it, I encourage you to seek professional help if you have feelings of depression and anxiety.  At least find someone who you trust to get your feelings out so they can be validated.  Depression is not a ‘phase’ in life, it is a stage that must be addressed when it is where you are.  Same with anxiety, it is a stage that needs to be addressed.

If you find yourself being the third-wheel of this strange pas de deux, try not to get caught up in their dance.  The spotlight burns your soul and turns you into a shell of your former self. Spend your time on this stage and figure out what is the root of your depression and anxiety and come up with a plan that will restore peace of mind to your life.  You may not get the diagnosis you desired, but there are people who have it worse in some way but have rediscovered the joy of living. I want to enjoy my life again and I want you to also.

Stage 3: Anger

Featured

grief2

Don’t get me wrong, I felt angry about something at every stage and on a bad day, that anger is right there to hold my hand and seethe me.  Going through accepting your newly downgraded body/mind while dealing with the deficiencies of this magical gift is definitely anger-inspiring.

I thought about this young man and just the most intense rage would swirl within me slowly growing and swallowing everything.  In my head, his family didn’t even have the decency to have adequate coverage considering how often their son got driving violations.  I was also angry with the system about this.  How does he have a driver license?

The anger grows.

When I wasn’t able to hold things as well anymore it changed and became a constant companion.  Every time I fell.  Every time I stuttered.  Everytime I I forgot what the conversation was about.  Every time I just couldn’t get up.  Everytime I had a painful test.  Everytime I got no answer.

The anger can be consuming.  Many people get stuck at this step of grieving and it isn’t hard to imagine why.  Someone else changed your life forever, yet they get to live a normal life.  He got some traffic fines.  His parents’ car insurance probably dropped them.

The anger has no rationale.

People in their early 20’s are just idiots.  You shouldn’t be able to drive unless you can parallel park between 2 dimes with only 2 movements.  I should set their house on fire, bet they wouldn’t like how inconvenient that is (*NO ACTS OF ARSON WERE COMMITTED*).  I should sue them for the car their son hit me with.

Misdirection is a best-friend of anger.  In the end, I was angry that I lost all of my time spend at school, angry that my body felt weak and fragile for the first time. angry that I could never horseback ride again, and so many more things.  I was angry because I felt like he took that all away from me.  No apology, no offer to help, he hit me, drove off, and left me to a live a completely different life.

I still have my days.  I have had to come to terms with each angry thought individually.  They all deserve to be addressed.  Yet, some days I have EVERY SYMPTOM and my body is revolting against me.  Things hurt in my head that I don’t think people were made to experience.  Luckily we are built to endure even the most torturous pain inflicted upon us, internal and external.

I have a lot more peace about the accident and it’s outcome since I began therapy and have been able to work through many issues.  Still, I am human and at some point I will be angry.  The key is controlling it better and better each time so I can thing through anger and not have such a negative reaction to things that upset me.  There is a better way, we just have to be willing to learn.

If you are angry, I want to let you know that you have every right to experience the emotions you feel.  It is unhealthy to push your feelings down so please seek the counsel of a therapist or friend of whatever allows you to safely express yourself.  We all want to be strong, but our feelings are valid and deserve our attention, especially when they cause tension or stress.

I know how hard it is to break up with anger, but it is toxic.  Be angry but continue to move forward as this stage turns into a macabre venue to spend your time if you linger.  Learn to forgive, learn to let go, remember, it’s ok to be sad.

From here we move to the next stage that no matter how hard you practice, it’s wrong.  That’s ok though, it’ll be over eventually, right?

Stage 2: Pleading, Bargaining, Desperation

Featured

grief3

Now I went to God and made my petition known.  Not only was I asking for my old life back and none of what I was going trough, but I would read my Bible even more than once a day, and do more Bible studies, and teach more, more conferences, more Duolingo Spanish and Italian every night, Lumosity everyday, go to the gym, cook everyday for my family and other families, just please give me my life back.  If not my whole life can I have no headaches? Or can the nausea go away? Can I stop falling? Can I just write more.

One thing I feel negatively affects a lot of people is that they feel like because they are Christians or “good people” or any religion is that many people are made to feel like their illness or condition is somehow their fault.  Lets be honest here, you can be a Christian and get cancer. So can an Atheist. Neither deserves it more than the other. Sometimes people get cancer and cancer doesn’t care your religion, skin color socioeconomic background, or any of that.  I do not struggle with feeling entitled to better health because I am a Christian. However, I still want the pain to go away, and that is my point I guess. My beliefs have not blinded me to science, I knew there was a chance I would not recover well, I just chose not to believe it which made getting through this process more difficult.  

Sorry, just trying to ramble for understanding sake, but might not be working.

Anywho, at some point I ran out of things to bargain with.  At the worst of times I pleaded like a dying man for comfort and peace.  It’s a hard place to be because when it hurts so bad you think you might die, surprisingly, comfort and love become just was important as medical intervention.  

I don’t want to leave out desperation.  First, the desperate thoughts come. Here is a list of some of my own:

  • just go back to work and work until I am physically broken beyond repair.  Handle the pain by developing opiate relationship. (seriously, what is that?!?)
  • try to cause an accident that causes enough damage to be immediately declared disabled.  (the risks were too high with this; I could live an even worse, more painful life)
  • drive head-on into another car (I didn’t want to hurt anyone else tho, so nope)
  • take sleep aids all of the time and just sleep life away.  (my family would notice)

I acted upon none of these thoughts.  See, when I was in that place in life, those thoughts in parentheses were brought to my attention by the people I love.  I think this is why it is import to have a support group around you who you can speak freely and frankly to without judgement.  That does not stop the thoughts or change how I feel, it gives me perspective so I can see my thoughts from someone else’s eyes.  There are times I say what I am thinking out loud to my family and just hearing it lets me know that it is probably not a positive or productive thought.  

It is my body (and not someone else’s) so I have to keep dealing with it’s failures.  Coming to terms with the fact that there may be nothing that can be done to “fix” me is accepting my limitations, my perceived inadequacies, and loving myself in spite of the changes I have undergone.

So, it’s like finding a unicorn.  You really want to, but when you try, it gets difficult quickly.

From time to time I revisit this stage.  As a musician, I tend to crave new stages, but the familiar ones are so easy to glide onto.  The show must go on, so off I prance to the next stage that will grace me.

 

Liebster Award

Featured

wp-1522701477924..jpg

Your chakras are blocked. You need to meditate and focus the energy of the universe on your blocked areas so you can open the path of energy flow. Once energy is no longer pinned in you head, the headaches will disappear. **Okay**

I was nominated with for a Liebster Award and I am a little surprised it wasn’t for my actual long-form blog!  I want to thank Mom Life With Chiari for the nomination.  I enjoy reading her blog because it’s filled with the love of a mother, the talent of an artist, and the pain that life sometimes brings us.  Most of all, she is an encouragement to me as a mom and as a writer and always lets me know I am not alone in this fight.  I am honored to be nominated, thank you!

For more history and the Official Rules for the Liebster Awards please visit the page here.  But basically, someone will nominate you and they will have 10 questions for you to answer and them you want to put 10 random facts about yourself. Then, nominate 3 bloggers who influence you and come up with 10 creative questions for them!  However, official rules can be found (and maybe more easily understood) at the link above.

MOM LIFE WITH CHIARI‘s  10 Questions about myself

1. What’s your advice to a person thinking about blogging?

Go for it!  We get these ideas about how something should be and whether we can fit into a mold, but we are so much more than we imagine.  Blogging isn’t about eloquence or loquaciousness (although both help if you are writing about fancy stuff), it’s about putting your thoughts and experiences in front of yourself and in front of others if you choose.  Go for it.  The worst that can happen is that you find you don’t like it and you journey forth to find an activity that allows you to express yourself comfortably.

2. When and why did you begin to blog?

I first started blogging years ago when I worked on cars.  I stopped, but my when I was diagnosed with Chiari Malformation I had such a hard time finding people’s everyday life experience post-op that I started The Life Of A Music Monkey and that got me through a lot of lonely nights after surgery and it gave me hope that someone else would read it and not feel lonely too.  The blog I was nominated for came about when I rejoined society and people started saying crazy things to me like, “have you tried kale?”

3. Do you think there is a line to be drawn with blogging, when do you keep your personal life personal?

I feel that a blog should be what you need it to be.  In my own blogs I tend to share what many people might consider to be ‘too much’ but I usually leave my family business out of the blog because it involves other people.  I tend to not mention my doctor’s names or office names for privacy.  I can share everything about myself, I have no shame, but I try to afford the people I interact with a little privacy.  So, many of the people oin my blog have had their cartoon identities changed.

4. What have you recently done and loved because it made you feel ‘young at hear’?

My car case finally settled!!  So, I went to the salon and and treated myself to a new cut and mermaid hair with teal, emerald, purple, blue, and magenta.  Everytime I go by the mirror I smile because I feel like a beautiful unicorn mermaid princess.  However, I am a minister at church and my pastor has not seen my new multi-colored hair.  Pray for me, ya’ll!!

5. It’s summer time, what plans do you have?

We have a pool so I envision many lazy bbqs.  I am from Las Vegas, so I am doing a staycation with my sister and probably taking a road trip.  I have a lot of therapy appointments (regular, OT, PT, music, meditative) this summer and a few neurologists in different disciplines to visit, neuropsych exam, and a crown on my tooth.  Yay, adulthood!

6. What’s your favorite color and why?

Blue is my favorite color.  I think that it reminds me of the ocean and sky as a child.  Looking out I remember looking out and seeing the horizon and thinking that while the sky and the ocean were both blue, they we beautiful, each in their own way.  Moving to the desert, I miss the water, but the sky is almost always a clear blue that is just amazing as it changes through the day.  Every shade is beautiful, even the velvety blue midnight sky.

7. What do you most struggle with?

I struggle most with losing my ability to work and be a proficient musician.  I have lost important pieces of myself along the way.  I hope I can eventually find them.

8. What does it mean to be ‘in love’ for you?

I have never been in love, so I am not sure.  I imagine it is that same magnetic need to nurture and protect like with my daughter, but more intense and deeply intimate emotionally.  Maybe I will find out someday.

9. Are you a morning person or a night owl?

I am an owl-lark.  I go to bed at 2 am, I am up drinking coffee at 6am, but I take naps during the day.  My body works on a weird schedule.

10. Do you like tea or coffee?

I liken this question to “which child do you love more” and it is very difficult to answer.  Coffee is like a warm hug on the inside, but tea is like the reassuring embrace of Mom.  I feel that they are both superior in their own way… but have you tried Crio Bru?  Puts both to shame.

10 Random Facts About Myself

  1. I taught myself how to write with my foot.
  2. Certain sounds cause physical discomfort or can bring on a headache, even if they are barely audible.
  3. Everytime I am in charge of a funeral, once it has started, I make myself a cup of tea and reflect on my own losses and collect myself so that I can do a good job.  It is 15 minutes of quiet during a day that usually begins early and ends late.
  4. I spontaneously cry when listening to live orchestras.
  5. I look at the stars every night before bed.
  6. There is always music playing in my head.  Sometimes I tap my feet or sway to it.
  7. I record my life in blogs and on social media because I don’t really form memory well right now.
  8. I can’t stand the sound of my voice.
  9. I love climbing and hiking (although I can’t do it right now).
  10. I LOVE glitter and shiny things.

 

My Nominees

Wearefamily

Breeze Communications

Smiling Through The Pain

My 10 Questions For My Nominees

1. If you could pick up and move today, where would you go and why?

2. Where do your blog ideas come from?

3. If we all had to blog with pen and paper, would you still be blogging?

4. If you could transform into any one animal at will, which animal would you choose and why?

5. Do you have a set amount of time that you spend on your blog?

6. Do you have a blog ritual? (Mine is a bottle of water, a cup of coffee, and Twitter open so I can say crazy stuff.)

7. What is your favorite meal? (in detail, please)

8. If you could end one problem in the world, what would you choose and why?

9. How do you relax and unwind?

10. Who has been a positive influence in your life and how do you plan to pay that forward to the world?

 

Stage 1: Denial

Featured

grief1

The lies we tell ourself to escape reality.

One thing I may not have previously pointed out is that we often go through shock before we make it to grief.  They are very different (*IN MY NON-MEDICAL OPINION*) because shock is the immediate response for most of us. We tend to handle it different ways in different situations.  For myself, I am usually able to stay calm and rational until I no longer have to be responsible for a situation, then I fall into pieces and hyperventilate and become quite useless.

The day my PCP told me I had to have brain surgery, I kept it together in the office, although she could see I was upset.  I walked to the truck as giant tears welled up and poured from my eyes, and then I got in, shut the door, called my mom, and though the anguish of a thousand souls I told her I had to have brain surgery and soon and I was scared and I released every anxiety and fear.  She got me quiet long enough to let me know that she was on speakerphone and my daughter was in the car. I immediately felt horrible. My daughter had never experienced me in that state of mind and now she knew it all as we were all on our way to her performance. We went, I watched her perform.  I stepped off to the side and called and told my job to put in for disability, and that was the last day I worked. Then, I went home with my sister and cried for three days straight. All the time. All day long. All night.

That is shock.

It wasn’t until about three months after surgery that denial became a thing.  We noticed that some things weren’t going back to normal. Still, I am a strong woman, I have made it through so much, I just figured I would have to work harder to get better.  According to statistics around 80% see improvement after five or six years. So, I am going to get better. At my six-month post-op, my neurosurgeon was concerned enough to recommend I go to the Cleveland Clinic because something wasn’t right.  Physically, everything healed as it should, but the memory and cognitive issues concerned him after six months with no improvement. This was followed by a steady decline in physical ability, memory retention, focus, and cognitive function.

I then bowed out of stage one and hurried to the next stage in my journey.

 

7 Stages of Grief For Chronic Illness

Featured

The contents released in this series were inspired by this article: The 7 Psychological Stages Of Chronic Pain which I found last week while surfing the net (dig my lingo, guy) looking for how different types of losses cause different types of grieving.  When we lose a loved one, we are faced with the finality of death.  It is often a hard reality for most of us who have experienced the actual passage from this life.  Time usually helps these wounds close over and they become tender spots in our hearts.  Memories that can bring back tears and smiles.

When we lose our home or job or car we often feel violated, ashamed, or helpless.  I have lost all of these things and they can bring alone a grief that is very dark and scary in the beginning, but as life continues on and new opportunities arise we make it through the ending part of the grieving process and begin fresh again.

When you lose your memory the process becomes more challenging.  When you are in chronic pain the process becomes longer.  When you have a degenerating disease it just becomes a mess.

For me, the memory loss is awful because I am constantly being reminded that I forget things and it is like I am in a constant state of being shocked about something I already knew but forgot.  I don’t know how often I tell people the same things over and over.

The addition of chronic pain makes the anxiety in my life miserable.  See, I could be having a fairly painless day, but I know it’s coming.  Maybe a day, maybe a week. I am going to have an amazing headache.  I know in my heart that it is coming and it’s hard to tell myself to just enjoy today.  I feel like I need to prepare to feel the wrath of the Palm of God pressing the crown of my head onto my neck.  Then, like yesterday when a pre-headache symptom appears, I am just counting the hours until I am debilitated.

My body hasn’t died.  My body as I knew it and loved it are simply no longer present and I have been travelling a river of tears trying to get back to a dream.  I think my old body would want me to learn to love my new body and take the time to explore it’s bells and whistles.  It’s hard.  I just don’t know what I am or who to be.  That’s ok.  If this sounds kinda familiar to you, I encourage you to read and comment about your experiences over the next 7 posts.  It honestly is nice to know we are not alone.

I want to do things…

Featured

wp-1521836435388..jpg

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.

Anxiety Bae

Featured

wp-1520908020551983645047.png

My anxiety man.

The thing I have begun to realize about anxiety is that even in the same person, it can manifest itself in different ways.  In myself it is often a stream of depressive and negative thoughts that just get worse and more outrageous he longer the cycle continues.  Or, I will cook.  I will cook for hours and days, all sorts of meals.  Way too much for my family to eat.  It is a physical show of anxiety.  If I don’t have a headache, I will go to the gym and give all of my frustration and anxiety to the weights.

Still, at times I get carried away with my anxiety and we go somewhere off the deep end for a while and it takes some time to get back to reality.  It happens.  I work through it in therapy, and if you check out The Life Of A Music Monkey you can see my Monkey Countdown where I am working on getting my anxious thoughts under control and turning them around.  Everything is a process.

So, don’t be too hard on yourself if you have a day where the negative feelings seem to be winning.  You are still an amazing person with the ability to try again and win the fight.  I am still on the circuit, I am no champion.  I have not defeated the darkness and saved the kingdom.  Some days, I just sit in the forest of despair and eat guilt berries, just like everyone else.  Eventually, I get back to the task of fighting the battles and winning a bit, losing a bit, and learning a lot in the process.

The Forest Pixie!

Featured

wp-1522706966397..jpg

Michelle, the Forest Pixie

This is my next imagining!  I think this would be a good fit for me if fantasy could become reality.  I LOVE the forest and it has always seemed like a magical place to me.  The wind sounds different.  The air smells different.  There is so much that is particular to the forest and I enjoy my memories of days spent running down sun-dappled trails and living my best life.

As an adult, I don’t live in an area near the forest, I live in the desert and I don’t know if there are desert pixies.  I imagine it must be sand-fairies or desert ogres.  I need that humidity that only a large gathering of trees can provide.

Notice my wings are made to mimic the leaves found in the forest and help me to blend in to my surroundings.  Also, my stick arms and legs are green for added camouflage.  That stuff falling from me looks like pixie dust, but it is actually pollen that I got all over myself because I am a messy eater and I get overjoyed at the abundance of the forest.  Eventually, all of the pollen is gone and I don’t look so magical, but you can see traces of it around my mouth and on the front of my dress.  Some things don’t change just because it is fantasy!

The Wild Michellicorn

Featured

wp-1522707132687..jpg

Michellicorn: the power of awesome!

I don’t live much in a fantasy world, but I have loved unicorns ever since watching Legend back in the day.  I also watched a lot of The Last Unicorn.  I could always picture myself as one of these magnificent creatures; endowed not only with the grace and strength of a horse but with magic in the form of a breathtaking horn set high upon it’s regal head.

Yeah, very into that scenario in my head.  That’s not a cutie mark on me, that is the brand from the music farm that I live on where we all sing in harmony and our magic is harvested to make pop icons.  Not how I thought I would spend my existence as a unicorn, but it is good money and the hours are awesome so I can take care of my growing filly while earning some carrots.

I should have given myself wings and been an alicorn, but it’s too late for all that now.  Now we just look at this picture and all be a little thankful that I am not a unicorn as I see them because I look kinda creepy, like “I would take you to town, but I would also go through your bags while you are sleeping” kind of creepy.

I imagine the freedom of running through open fields can’t be beat, unless you are an alicorn and can also fly.  So, there’s that.  I hope you have enjoyed Michellicorn: the power of awesome!

Don’t forget to visit The Life Of A Music Monkey my blog on life with Chiari behind the veil.

Out There…

Featured

wp-1522697790784..jpg

Out there…

I enjoy blogging and especially this comic because it is just a fun expression of my life.  So, I like to sit outside at night, and last night I started imagining myself as random fantasy creatures.  Here and there between my other posts, I will post my series of  wild imaginings!

A Whole Life

wp-1558581749577638858085149885281.png

Chiari is not my whole life

However if you knew read my blogs or followed my social media it is easy to assume that all I do is sit around having Chiari all day and writing of my sufferings.  I hope that is not the way I come across, but a lot of my life has been medically related in the past few years, so it is a big part of my life.

I am sure that I have spent time talking about some of what I do at church, but I also have other things that I enjoy that I suppose I don’t always speak about.  Even I have to remember that pulling back the veil also means exposing how I spend time enjoying myself during difficult times and what I do between flareups.

At my laziest, I am watching Gumball on Hulu.  Just over and over.  At my best I take walks around my neighborhood and take pictures of people’s flowers.  I make videos, I play ukulele, I bake cookies.  I have a range of interests that is ever expanding as I crave information and knowledge.  One I am able to master something (which is almost impossible now, but it happens) I am ready to move forward and learn something new.

I just picked up a unicorn cross stitch project.  I have avoided cross stitch and needle point my whole life, and here I am, ready to learn.  I have been considering crocheting or knitting again.  I know that my fingers aren’t as nimble as they once were, but I will use them until they don’t move.  I am thankful for every bit of strength I have left.

Sketching, drawing, and painting have always been activities that I enjoy but I am not that great at.  The funny thing is that at this point I understand it is more for my enjoyment because I am not in the business of selling paintings.  I can enjoy my ugly paintings.

I have taken to watching Marvel Comic Universe movies and reading DC comic books.  Neither have ever been interesting to me, and they still aren’t really, but it gives me something to talk to other people about, so in that sense it is worth every minute I put into it.

Writing has become a necessary part of my life, so I have begun writing a book.  Still debating on publishing the one I wrote.  I just chaired our Chiari walk and I am plotting and planning, praying to get the right people in my path.  I am ready to start taking advocacy to another level and while I know I have a few obstacles to overcome, I know this is where I am supposed to be.

I suppose thinking about it, it is hard to see how all of these things are woven into my life along with the family, church, and so many doctors.  However, I encourage you to MAKE the time to do something that you enjoy for at least 30 minutes a day.  An hour if you have access to the time.  I usually can’t focus for more than an hour or so.  If I have a headache, maybe 15 minutes.  Always keep something with you that you can do to keep you mind functional during slumps in the day.  Some days I just play with my fidget dodecahedron (yes, I am THAT girl) because it requires zero thinking.  Other days I get on my 3Ds and play video games.  I can do it for about ten minutes before I tire of that!

There are so many options, even listening to audio books and just resting.  All of these things are great for helping to get through days that aren’t the best or the worst.  I look at what I go through just trying figure out what my brain is doing and I know that other people out there are going through the same or worse with less support or resources than I have.  My mission is to figure out how to change that so that people can get through these times with hope and purpose in their lives.

 

Pain Unthinkable

wp-15585800313387389919599018174922.png

Chiari is pain unthinkable

When the headaches began they were small blips on the radar and as time went on they became longer, stronger, and more debilitating.  Three and a half years after decompression I still suffer from headaches that keep me laid out for days.  I still have nausea that may be one of Earth’s most powerful sensations.  Added onto the melody of Chiari head woes is the harmony of other dysfunctional systems of my body that cause discomfort or limit my life.

Everything in my body did it’s own thing after my surgery.  It has resulted in three years of painful tests/procedures that often are repeated or are peripheral but need to be looked at.  I have been poked, prodded, electrically stimulated muscles, the endometrial biopsy that almost made me rethink life, and most recently this colonoscopy and upper endoscopy.

I won’t ruin all the fun because this is going in the other blog 

Needless to say, they use the word “discomfort” in a VERY deceptive way!

There are times that my body is stewing in pain and at some point it doesn’t matter because everywhere hurts.  I prefer to stay home and experience this feeling where I can complain and fall asleep.  There are times when I am able to distract myself but I am often left alone with the pain.  Not that there aren’t people around me who care for me, but no one can really come inside my body and help me bear the burden of pain.

These are the times I talk to God and wonder how I am supposed to be of any use to the world if I am laid out in pain.  I am at the point of giving guardianship of my daughter to my sister because I need to be able to get through this time in my life without scarring my daughter.  She has had to deal with a lot, so we all agree that it is in her best interests to be away from the medical whirlwind that is my life.  Luckily, she will be staying in the state and so we can still hang out and have a close relationship.

Chiari and all of it’s baggage has hurt my body, my emotions, and my mental state.  It has taken two years of therapy (psychologist and psychiatrist) to realize that the past is gone.  I will never be the old me.  My body may always hurt, but that doesn’t mean that I can’t learn to cope and make the most of my better days of health.  I just chaired a walk and I am still recovering because I had this procedure three days later.  These days I have to remind myself that even in my pain, I can draw a picture of how I feel and write about it and that will help me to be distracted and to hopefully form some sort of memory.  At the very least, an accurate record of what I did and how I felt about it.

The pain of my Chiari has managed to infiltrate every part of my life and body, but I am not going to let any of what is happening to me stop me from talking about it, spreading awareness about it, and getting out to make things happen.  I realize that nobody knows who I am, but in the next year I hope to change all of that.    I encourage you to take an action to spread awareness or to educate.  Blogging is a great start and you can find many ways to advocate.  It’s time to change the face of patient care to something a little friendlier and more accepting and understanding.  I am not sure if I am a log, tinder, or a match, but the fire will be lit and I will be there fighting for better care.  It’s time to infiltrate Chiari, learn it’s secrets and destroy it’s secret lair.