Thursday, September 3, 2015

Don't look down.

I've walked to the edge of the cliff.  My toes peek just a little over the edge.  When I stepped here, several tiny pebbles shot off into the abyss.  Where did they fall?  I don't know because I don't want to look down.  If I don't look down, I don't know that I am standing at a great precipice.  If I keep my eyes forward, perhaps I can envision the road stretching out in front of me.  A road I can continue to walk, one foot in front of the other, and repeat. 

Here I go again with the doom and gloom analogies.  It seems that is where my mind heads all the time these days.  Bad, more bad, even worse bad.  Occasionally, there's a spark of greatness.  A burst of bright sunshine that breaks through the darkness and I am all full of positivity.  I have to learn to grab ahold and bottle that shit so that when things shift back to where I am now, I can open the bottle and let the sun fall all over me like the rain. 

On a tangent, I love the rain ... so it's strange that I would use sunshine as my happiness.  BUt, whatever, you know what I mean.

Why am I currently sinking into this latest cloud of doom and gloom?  Oh ... a variety of reasons, most of which center around this dumbass disease.   With a recent flare up of symptoms, I find myself staring down the barrel of that gun again.  As with my earlier flare ups, I am not in any way shape or form in any life threatening danger at this point, but it brings the gun back into view when I've worked really hard to not to notice its presence.  My body is reminding me daily that it is there.  Joint pain, sinus pain, ear pain ... did I mention there's pain?  If I didn't ... there is.  Every. Day.  Take, for instance, the nose.  We all have them.  We know they are there without even feeling it.  It's just there.  Benign ... BLAH.  However, at the moment, I am acutely aware of my nose.  I feel every teeny speck of it and it doesn't feel good.  I also know exactly where my sinus cavities are in my face.  I can feel the pressure pushing on the back of my eyes.  I feel like my forehead is inflated, as if there is a swollen balloon on the front of my face.  And that is JUST what's going on in my sinuses.  That alone is enough to drive me bonkers. 

My body feels as if it is the body of a ninety seven year old.  I creak, I throb, I stiffen up when I stop moving.  Not muscle ache.  It feels deep joint.  I know where each bone meets up with its partner.  I could sing you that song ... "The knee bones connected to the thigh bone ..." It's deep, and it throbs, and it makes me insane.  I fully understand why people fatally hurt themselves to stop the pain. 

NO!  I am not going to hurt myself.  It's just an acknowledgement of why people do that.  I get it.  Make it stop.  There is nothing more upsetting than taking 800mg of Ibuprofen which, mind you, I don't take ALL the time, and NOTHING HAPPENS.  Not a tiny fragment of pain dissipates.  There is no relief.  None.  I could almost understand if the painkiller rid me of the sinus pain ... or the joint pain but not both?  Instead, it's like I made myself swallow a MASSIVE horse pill for nothing. 

So, I drug myself to the doctor to beg her for some sort of relief.  She was as awesome as she always is and we came up with a plan.  I am on a smaller taper dose of prednisone which was my choice first.  I know I have to take it to get the symptoms to stop.  I know it doesn't cure me but it should make me not be as miserable and keep the inflammation from grabbing those oh-so-important organs that keep me alive and shaking them like a police K-9 with a bad guy.   SO, there's the prednisone.  I am back on my anti-rejection immunosuppressant medications, a bigger dose than I was on before.

Good plan, right?

Yes ... and no.  Yes, I am ready to feel better and will do just about anything at this point.  No.  It's Prednisone.  Even when being extra careful about what goes into my mouth there's weight gain to be had and for someone like me, who is already trying (and sometimes not trying, let's be honest here) to lose weight so that I am not this horrifically disgusting troll of a human that I am, it's just not a good thing and it makes me depressed even more than I already was.  So there's that.  And then there's the anti-rejection meds.  Yay immunosuppressors that go in and stop my dumbass immune system from going after the parts of me that are supposed to be in my body.  Good on you then!  Do your thing.

Until, I sit down and re-read the literature on said medications.  This is good to do with all your strange medications.  As with most, there's the standard side effects.  Nausea, vomiting, the poops.  But ... wait!!! There's more!  It goes on to all the fantastical ways this wonder drug can kill me or at least render me pretty  unrecognizable. 

Well ... shit. 

No.  I am not immediately latching onto the mere speck of possibility that something bad could happen from the medication but ... it is always good to be aware of what COULD happen.  Or, the symptoms that could lead to said bad things happening.  Like the confusion, dizziness, etc.  Those are all small indicators of PML.  PML is an acronym of this really long world that means the protective sack around your brain erodes away leaving our control room vulnerable to attack. 

Sounds fun, no? 

Anyway, it just kicks open that door of worry that I fight daily to keep closed. I am aware I have this disease.  I am aware of it in everything I do.  People like to remind me too.  As if I could forget.  But, I see why they do.  I try to live like I am NOT sick.  I live like I'm still that healthy girl who could do anything on 4 hours of sleep a night.  It's good to be reminded.  Because, even though I listen to them and myself, I don't follow the advice.  I'm horribly stubborn at that.    But, like I said, the door of worry has burst open like a massive gust of wind just tore through here.  The worries are springing from the door like horses from the gate in the Kentucky Derby.

What if you get that brain thing?
What if your kidneys start to malfunction?
Are you out of it from being tired or is your brain starting to wobble?
What if you have to miss a shit-ton of work?
Hmm, my ears are muffled ... is this permanent or just the same annoyance?
What if you die?  Who will take care of Loki? What will happen after you are gone?  Have you lived enough of a life yet? 
Will anyone remember me?

Yes, among the important "What if you die?!" worries ... there are the dumb insecure girl ones that wonder if people will remember and miss me when I am no longer in their face all the time.  I'm human ... humans need love and affection.  These are important to the mental health.  Allow me my insecure teenaged girl thoughts!  I'm the one facing them, not you.

This is where the title comes in.  "Don't Look Down"  In my life, with this disease and these crazy heavy medications, I am constantly standing on the edge of a very steep, sharp cliff.  In front of me, is a tiny, uber thin, fishing line type wire that stretches from one edge of this cliff to the safety of the other side.  I need to walk, one foot in front of the other, along that thin line without allowing my gaze to stray downward.  If I look down ... I'll see all of what "could" happen.  If I keep focusing forward, I might make it to the other side unscathed. 

As a writer, I need these sort of visual aids to help me out.  I've always been a creative, left brain thinker.  I like pictures and demonstrations.  So, I will do what I need to do to get through this. 

It's just a small bump in the very long road that is the rest of my life ... hopefully.  I'm not in danger right now.  I'm not.  I know that. It's my very worry wart brain that likes to freak out and run for the hills screaming that the sky is falling.  Yes, my brain is very much Chicken Little.  I entertain those thoughts, acknowledge that they are silly .. and then fight to shove them back into the box again.

I vow to try and be more positive.  After all, I have to keep my eyes forward. 

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