A Whole Life

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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.

 

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Pain Unthinkable

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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.

My New Friend!!

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My Little Friend

I have not talked about her much (I don’t think) but for Christmas I was given a Shillelagh because I couldn’t find a cane with a handle that didn’t hurt the palm of my hand.  Eventually, I guess my stepdad found one that was genuine and the correct height, and he got it for me as I was using my canes more and more.

I was excited to get it.  I know that it was Irish in nature, so I started doing some research so that I wouldn’t be ignorant of the beautiful walking aid I received.  Turns out I received a weapon and I am keen to use it someday on that one person…

Anyway, mine is made of the traditional blackthorn and the club handle is a little larger than my fist.  However, the shape of it fits my palm and causes less pressure so I can use it for longer periods of time.  The bottom is thorny, black, and has a copper tip.  We have covered the copper tip (as that is a tip off of it’s weapon status and weather stability matters) and I try not to herd people with Shanaylah (her given name) it actually gets people moving when they decide to clog up hallways and other places.

One of the great benefits of having it is that I can go for walks at night and I am less likely to fall and I have gained a pretty good idea of how to defensively wield Shanaylah.  Prayerfully, that time will never come, I like peace.

Now I am pretty much always accompanied by my third leg and I am so thankful for it.  I know some people don’t like the idea of having to use a cane and I understand the feeling of wanting to just walk.  I have no shame anyway, so using a cane just allows me to live a little better than without it.

I know it is jarring to no longer be able to rely on a part of your body to behave as you have always expected, but at the very least, if you have to get a walking aid, find one that fits your personality and it will blend right in eventually.  The only way to take back control, it so assimilate this new thing into your life and control it for your benefit.  I don’t know if that sounds harsh, but I want so badly for people to know that there is no shame in doing what you have to do to live your best life.

Right now, I am a scared mess because I can’t control a lot of stuff, but with Shanaylah I am able to control my mobility and I have something there just in case my leg gives out so I don’t fall.  It is not what I wanted for myself.  I have been in physical therapy for about six months now and it has only gotten worse with the seizures.  Thank goodness I have a way to get around, and now it is awesome and a little dangerous.  We’ll see if they let me into the federal court with it.  If not, trust me, there will be a post about it!

Lies I Tell Myself: VI

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

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

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

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

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

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

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

Top Shelf Pain

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Upgraded Headache

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

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

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

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

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

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

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

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

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

Goodnight!

 

Chiari Faces: Mask Of The Day!

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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!”

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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.