Heads SUCK!

Heads SUCK!

I think headaches are hardest on sunny Fridays.  I sit at my desk and work not with the happy thought that later in the afternoon I can go out and enjoy the weather by floating in the pool or working in the garden.  Instead I sit here begging my head to stop hurting long enough to allow me to get the bare minimum of work done to make progress.  If I look beyond the work day a layer of depression floats over my head like a storm cloud because most likely my time will be spent in a dark room, still with no movement while the world goes on without me.

I am glad my family is able to continue some level of normal when I am missing but my heart hurts not being able to take part.  I want to make plans for the weekend to laugh and play or just hang out with family, with friends or even on my own but all those things can’t be planned unless canceling is accepted as a probability.   And you know what, after 18 years most people in my life know this probability but 18 years is a long time to put up with it.  I wouldn’t blame anyone for limiting the invites to me simply because of my cancellation policy – and that SUCKS!  That is not how I want it to be.

Then then there is the in between time, when my head hurts enough that normal life can’t happen but doesn’t hurt enough (or is dulled by meds) that I rebel against laying in my darkened room.  There is nothing in the in between.  I can’t function but I can’t not function.  I wear yesterdays clothes because I probably slept in them, I don’t have the energy to brush my hair so the messy bun becomes my ongoing style.  Protein bars are my only source of good because they are easy.  The sounds of the mail truck and the garbage truck come in waves like a tsunami.  A simple trip to Target seems like a climb up Mt. Everest in flip flops carrying my full oxygen tank.  All my energy is devoted to sitting up in the light and pretending, even if just a little, that things are okay and I got this…many times all the energy goes into my job so I don’t loose it and there is literally NONE left for anything or anyone else.  Did I mention my family is awesome?

I am in the in between space today.  The meds I have are not working great but there are no others to take.  The opioid epidemic has taken relief even from the ER.  Even though I have paper work from my Neurologist at U of M explaining my condition and what course of treatment should be used to help me when I get so bad the ER is the answer, they won’t do it.  They will do no more for me that what I can do at home which, on days like today, doesn’t quite cut it.

The bottom line is Headaches SUCK!  That is all!

What headaches really look like…sometimes!

Attempt to sparkle on!

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

 

 

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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