My Easy Button

So, unlike many of my posts, this one is coming in real time.  No editing, no sitting on it for 6 months, just raw, vulnerable, and honest to the bone.

I am sitting in my hotel room at this AWESOME conference, Emerging Women 2017.  I went last year and it too was amazing, hence I am here again.  The problem is….I have a headache!  I had one yesterday too.  For those that are just joining “my souls circus” you need the speed read of…I have an inoperable brain tumor that will not kill me but will give me crazy ass headaches that suck!

So, having a headache is not the story line here….the story line is what am I going to do about it?

Yesterday, I was in a breakout session on “How To Not Die From Your Emotions: Finding Clarity and Courage Through Your Crazies” with LiYana Silver.  I did an exercise where I had to bring forward my emotion and feel it through my whole body for 90 seconds.  I choose to feel the fear I have of the headaches.  The panic that the pain will strike me at a time and place where I will have little control (aka – a conference in Denver, where I am alone and I don’t want to miss anything).  In the course of the exercise I was asked to hold my emotion as if it were a young baby…my mind said…in BIG ASS BOLD LETTERS running across the screen of my brain….”I AM PART OF YOU and THAT IS OKAY”.  It felt like a huge breakthrough.  There was a sense of relief, of acceptance and a bit of freedom all wrapped into one.  But the story doesn’t end there….

I woke up this morning (yes, it is still morning in this time zone) and I have a headache.  What the hell, I thought I addressed this yesterday.  As I sit having coffee, putting my hair in rollers and figuring out my plan for the day….which could involve missing more conference because of my fucking headache it hits me…..THIS IS NOT EASY!

Having a part of you that you cannot control, a part to which you have to share control is not easy.  I am being forced to listen to my body and not just my mind.

<<I have to interject a thank you to Suzy Batiz for reminding me that listening to your body is many times way more useful than listening to you head.>>

So how did I not have this problem at last years conference?  Was it at a lower elevation…yes but what the hell difference does that make?  Where the people difference…yes, but they are all awesome so no difference there.  The difference is….last year I had my EASY BUTTON.  Last year anytime I started to feel something I took a Norco.  When a speaker said something that struck me…I didn’t really feel it, how could I?  I was pumping in the Norco like it was oxygen.  I sailed through last year on a wave of high energy, inspiration and some very potent chemicals.

I don’t have the chemicals anymore.  I stopped taking any/all medications (drugs, whatever you want to call them) that fit into the Narcotic category in 2016.  I don’t have an easy button anymore. When I feel something, I feel it.  When my left eye starts to twitch from pain or tear from fear of the pain, it just has to happen and I just have to let it happen.  It all feels a bit shitty right now because I am missing out on what I know are great speakers so I can take a nap or a rest or just deep breath in a corner so I don’t loose my shit but I have to believe…I HAVE TO, that this no easy button is the route for me and that if I miss some really cool stuff then maybe it just wasn’t my time to experience it.  Yes, I am going to have to repeat that last part over and over in my head because even this morning I have missed a few speakers already.

The good news at this very moment is that I feel safe.  I feel safe that I could tell these women, Power Circle 15, and others I am meeting each day, that this is my story and this is my struggle and I would receive nothing but support.  Thank you for giving me a safe spot to from which to detach from my easy button.

 

Sparkle On beauties….all is okay.

C

 

 

Who Made The Rule?

Who made the rule anyway?

Why the hell do I feel like a total looser any day that I don’t get dressed, hair & make up EVEN though I am working from my home office? Not just “working from home” but actually working at the office that I have created inside of my home. I have been working from home for the majority of my days over the last 7 years. Pretty much since my daughter started pre-school and I had to take her at some weird late morning time and pick her up 3 hours later to take her to daycare. It has been a blessing beyond believe for me in multiple ways but there are also some hard rules that I did not intentionally put into place that are causing me grief now that I am working towards my soul shift.

Like wearing makeup!

I have some kind of mental block that says, “you are not really prepared and ready to face the day unless you have on your make up”. Really, what the hell is that about? Lately I have been putting on my makeup sometime around 2pm just to make it seem like I have been a fresh little worker bee all day when really I was wearing my PJ’s and working since I rolled out of bed the second time just before 9am. That has to change. If I show up….ME, just me, that is all that matters…RIGHT?

This is where I twist in the wind a bit.

I know it is okay to do things that make me feel better about myself. Dressing, hair and make up have been true markers of this for me in the past. Do I have to kick them to the curb to be true to myself? OR, can I make the call from one day to the next about what fits into my world THAT DAY? Will I abuse this revised policy by always wearing my PJ’s all day and then actually become a slug like I mentally label myself OR to I practice some self love and remind myself that it really does not freaking matter what I look like while I sit in front of the computer and do work or talk on a conference line.

Also, what kind of example am I setting for my daughter? Do I want her to know that it is only HER that matters and not all the exterior stuff or do I want her to know that it is okay to do things that make you feel more whole…but why would she not feel whole just as she is?

Do you see the war here, the teeter-totter, the pendulum swinging?

HOLY HELL, it is no wonder my head hurts all the time!

So here is another “this or that” situation. Love yourself as you are at this moment BUT be healthy/active etc. Well, I am over weight, not healthy or active and I am finding it really difficult to love myself the way I am. Yes, I am doing something about it but this battle will always be there because I will breathe, eat and live. How do I reconcile it in my head and make peace with my stance?

Since writing this nearly 6 months ago, I really feel like I am closer to owning the job of making my own rules.  Granted I have to remind myself nearly every day that I am the maker and breaker of these rules but it is progress.  I wear my hair in these silly little pebbles pony tails on the top of my head most days and I really like it.  It is rare to find me in a business suit anymore because now I put a flowing Kimono over my sheath dress rather than a tailored jacket.  Sometimes, I even leave the house now with no make up.  AND, I am feeling pretty good about my new rule…JUST BE ME, what ever that is on that day.  So if you see me out in the world, don’t make a stink about my crazy hair or my multi color toenail polish, because you just never know what I found more important to spend my time on that day than my appearance!

 

Sparkle on…even when your sparkle is a mixed bag of crazy!

C

Hi, My Name is….

Hi, My name is Cherisse and I have a brain tumor!  My husband hates when I say that but the dark side of my humor finds it funny sometimes.  I do really have a brain tumor but not the horrible kind that will kill you, I have the nice kind that just haunts me everyday!

Seriously, Don’t get pissed that I made joke about, just roll with it.

I have what is called micro adenoma.  It is a small tumor on my pituitary gland.  Does it cause my headaches, no clue!  They tell me it is not a good idea to remove it because they would have to blow away my pituitary gland to get it and it seems my pituitary gland is the mother board of hormones so, we are not going there.

I also get cluster headaches a few times a month.  I have talked briefly about those in another post.

I also get what I call monster headaches, which most people call migraines or chronic daily migraines.  I just call them hell.  They live with me nearly every day (let us call that 29 of 30 days).  Most days they hover around a 4 on a 1-10 scale but somedays they get to a 6/7 and then about 3 times a month they get to a 8/9.  10 is strictly reserved for the Spinal Headache which happens when you have a spinal tap go bad.  Anyone who has had that will realize a  10 is a special level of hell.

I survive this every day, for the past 17 years.  I work full time, I am a mom, a wife, a friend, sister and daughter.  I would like to think I am a valued member of my community but that might be pushing it a bit.  I don’t really LOVE my community and most times I am too tired and pain distracted to do much more than attend my daughters school related events.  Cleaning the side of the street for adopt a road is just too much for my plan.

I think I have tried nearly every medication out there to help.  I have even found myself in the vortex of opiate dependence THREE times (you would think I would learn)!  I am now to the point of researching meds that are not yet approved by the FDA and cannabis.  Desperate times call for desperate measures because I am NOT willing to give up on life because my head is going to explode (although it is REALLY tempting at times).

I think I have some experience to share so maybe others suffering can avoid some of the pitfalls that have wounded me or maybe they or their family can just feel a little glimmer of hope for tomorrow because I KNOW that the slightest glimmer can be what gets you up and going to find the next possible solution. I GET IT!

I also think this is all part of my plan (GOD, I really hope this is part of my plan otherwise, this is just cruel).  I need to share, offer hope, encouragement and in the process grow my soul to what it was meant to be.

Sparkle on!

C

 

 

Yesterday was…Yesterday

Yesterday was a good, no headache day.  But it was also yesterday!

I actually twirled though the house saying it is great to be alive.  My daughter looked at me like I was a bit crazy but she seemed to enjoy the fact that I was giggly and silly.  This does not happen much for someone who suffers from chronic headaches.  There are two key things that make yesterday such a wonderful experience….

  1. It reminds me that it is possible to feel like a human being.  Someone who wants to participate, and can participate in activities of life.  What a concept right!  But for me this is HUGE.  Days like this come around about once every 90-120 days so they are CHERISHED!
  2. It reminds me that I am not CRAZY!  All the other days, where I feel like some level of crap, I start to think that I am doing this to myself.  My thoughts get away from me and begin to spiral around me like toxic waste.  Thoughts like “you are fine, just suck it up” and “you are a whimp, you can’t handle pain” or “you head doesn’t really hurt, this is just normal life”…THEY CAN BRAIN WASH YOU…and it can be done fairly easy when you are in pain every fucking day.  Having a good day reminds you that those thoughts are just that, thoughts, they are NOT REAL.  It is normal to expect to feel good, EVERY DAY and let the pain be the exception!

So, I wrote in big letters in my gratitude journal last night how grateful I am for headache free days.  Today, I could write that but my list will probably be a bit more simple.  Like grateful I didn’t throw up, grateful I was able to get my daughter off to school and grateful I was able to get a least a few hours of work at my corporate job done from my home office (although while wearing PJ’s and napping a lunch).  Those things are worth being grateful too.  If they weren’t, I think I may have given up by now.  This is a hard path to travel day in and day out and sometimes  the simple things are what keep me going.

My plan yesterday was to write that next story in the headache series…what happens after that first trip to the doctor nearly 17 years ago but, that didn’t happen.  Instead I enjoyed the sunshine (although cold) by going for a walk with my husband and our two pug dogs.  I baked yummy apple treats with my daughter.  We played outside on the trampoline and we enjoyed a great dinner all together.  I am sure there was more but I was pretty pumped to be able to remember it all!  Maybe tomorrow I can continue the story as today, with even its small victories has left me exhausted and a bit bitter and cranky.

Tomorrow is another day…maybe, just maybe it can be another yesterday!

Even in the midst of the darkness, spread your sparkle EVERYWHERE!

Sparkle On!

C

 

 

Today and the Beginning

I want to be done. That is what keeps running through my mind as I lay in the fetal position on my bed, gently coaxing myself to breath slow and deep from the oxygen mask that covers my face. Tears puddle in the corners of my eyes as I try and force my mind to think of something other than the throbbing pain in the side of my head. All that swirls around me beyond the sounds of my household are thoughts of I want to be done. What does that even mean? I want to be done. Yes, I want the headache to be done but it is more than that. I want to be done with everything that has anything to do with my headaches, only I don’t what those things are! Isn’t that a big cluster fuck of a problem?

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Headaches SUCK

I would not wish a headache on ANYONE!

Granted, I have never been shot or stabbed but I have been through child birth and headaches are the absolute worst pain I have ever felt. Not all headaches are alike but they all SUCK ASS!

Today I am struggling with cluster headaches. These hit you like a semi truck,  leaving you flattened in the road with zero notice, BUT, they leave just as quick as they come. Mine are like an ice pick going into the left side of my head. Sometimes I have to grab onto something so I don’t fall down. If I am already sitting chances are I will stop breathing (not a smart thing to do) and my whole body will nearly freeze up. They only last 15-30 seconds…which does not seem like long but it is a really long time for that level of pain. These ice picks will come and go all freaking day long. Really makes me want to be super nice, chipper, productive person today….NOT!

The truth of this day is like this…

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