Wednesday, September 30, 2015

But wait ... there's more!

When I cite the things that are wrong with me, I cringe.  It's a hefty list! No wonder I often look out at the world with a sort of blank apathy.  There is worse that could be happening ... that is true in probably every situation.  But, when you're standing at the foot of the mountain, it gets hard to be able to grasp that and put the smile back in its rightful place.

My doc and I are investigating the potential OTHER problems I might be having.  I have found myself spiraling down the rabbit hole, hands flailing around for something to grab onto so that I don't plummet all the way to the cold hard ground some distance below.   The depression is ramping itself up because I am not having any relief from a lot of these symptoms.  I am in tremendous amounts of pain and an 800mg Ibuprofen doesn't alleviate it at all.  There's not even a tiny twinge of relief.  I can't sleep because I can't get comfortable, the pain wakes me up.  I can't concentrate, I can't think.  I can't do the things I enjoy.  I can't move around much so I am not exercising and gaining weight because I took prednisone.  All of this is compounding and making me feel pretty desperate.  I feel like I am constantly on the verge of bursting into tears.  A couple times, I actually have. 

So, I turned to the good doctor begging for something ... anything ... to make it better.  She had mentioned another additional diagnosis a few months back and when I decided to research what she'd said, I was shocked to find that I matched up with all the symptoms on the short list and pretty much all of the symptoms on the long extended list.  What is this mystery disease?


Oh lovely. 

To me, this is a disease that has so much stigma behind it.   People either accept what you say and do what they can to help or they launch into some diatribe about it being all in your head, diet affected, etc. 

Let me break it down to you this way.  Diet affects everything we do.  Every condition can benefit from a clean eating regimen.  Every. One.  Of. Us.  So, honestly, if I hear someone start to lecture me on that if I am diagnosed I am all ready to launch back. 

I'm just so tired of being told by everyone how to fix me.  Thanks, I appreciate that you have the miracle cure.  I just want someone to support me, is that asking a ton?  Just be there for me, just let me have a moment, just let me cry.  I've soldiered on with his, hiding most of my tears and frustrations.  Yes, I've vented here and people have heard me vent but I try to keep it away from the world because ... no one gives a shit. 

The truth hurts but it's true. 

All I can say is ... I'm actually hoping its true. Then, there's something that can be done.  Reading the doctor's reply to my plea for heavier pain meds because I can't sleep at night destroyed me.  I can't take heavy narcotics if I do have Fibromyalgia and ... she wants to wait to figure that out and ... I would then have to talk to my general doctor.

That doesn't make the pain stop now. 

I feel the tears coming again.  I hurt so bad from head to toe.  My sinuses are throbbing, my rib cage feels like I have three knives poking into them on my back, I can feel every bone and joint in my body.  My head feels like it is in a fog, like a storm cloud of its own.  I can't ever get comfortable in any chair or bed, etc.  I can't stand, I can't do anything to feel any sort of peace ... any relief. 

You can imagine why I would feel like I am going to cry.  I just want to feel NORMAL.  I just don't want to hurt!!!!!  I would gladly feel run down and tired right now.  I would gladly take that part and give away this massive pain that is the only thing I can think of right now.  It's the only thing that ever crosses my mind. 

I am hitting the end of my rope.  I really am. 

Wednesday, September 23, 2015

Sometimes, I wonder ... why bother?

Warning: The following isn't going to be a very happy post.  If you're not interested in the woes that bounce around in my head ... leave now. 

Have I mentioned lately that I hate my life?  That's a generic statement.  I don't exactly hate everything of my life.  I love my husband, our animals, my hodge podge family, I love my house even though it's sucking the money out of my bank account and stressing me out.  From a distance, I have it pretty darn good, don't I?   

Let's lift the lid off the snowglobe of my life and peek inside.

I am miserable.  I feel awful.  I've been sick for a few weeks now and it's really bothering me.   I had bronchitis and that was one thing.  I'll take that back in a heart beat in exchange for what I am feeling right now. 

In short, it feels like my brain is dying.  I'm dizzy.  The world spins around me for no explained reason.  I try to feel it out and there are some obvious triggers.  I look down at my phone and scroll through things, I am looking at stuff on the internet, turn my head too fast, turn a corner.  Those are clear vertiginous triggers.  However, I could be sitting here looking out the window and suddenly the room is whirling out of control and I feel like I am going to collapse.    I can't concentrate.  I struggle to find words, I forget what I am doing.  I feel confused a lot. 
Right now, it feels like I took some heavy medications and am about to drop off into hours of unconsciousness.  Except, I haven't.  I feel like the whole front of my brain can't comprehend anything ... and I feel like I am sort of not all here. 
My heart feels like it is struggling to pump sometimes in my chest or that it's going too fast.   I have strange headaches that cause dizziness and nauseous on top of the regular dizziness.   And then, there's the weird, and painful, pain and pressure behind my left eye that flails out of control when I tilt my head forward. 

I am in a very unhappy place when it comes to my health.   I feel like I am left to just sort of 'deal with this' on my own.  Everyone has great advice: Call the doctor, go to the ER.  Yay, great ideas, right?


I look too healthy.  I am one of those "You don't LOOK sick" people.  So I must be faking the whole bloody thing, right?   I'm not super thin, I have no outward signs of anything.  I must just be someone who is manifesting this whole thing for my  own misery.

Don't make me laugh. 

I had several moments where I should have been in the ER.  Did I go?  No.  Because the triage nurses always treat me like garbage.  And then, I sit in there and have an EKG which is normal ... then I have normal blood work (because they only test for the basics in the ER), and no one ... and I do mean NO ONE ... knows anything about the disease that I have.  They look at me like it's something I pulled out of freaking thin air. 

Yes, Dr. Know-It-All, I made this up.  I feel like being in complete misery and having your staff treat me like I am a pill popper trying to score some free meds.  I like this life, please ... treat me like crap some more.  It's not like I am not already upset enough.  Let's make it worse!!!

Why do I even bother to try and fix anything?  WHy do I take my medications on schedule?  I should just stop taking them and let things do what they will.  The way I am living now I am expected to just be completely miserable 100% of the time.  At least I'm alive, right?   Perhaps if I was rolled into my doctor's office half dead, they'd go: "Oh, we should have treated this before it got thisbad"

You think?

It doesn't do me any good to even vent here.  It's not like it is going to change anything.  There are people going through far worse than me.  I should just close my mouth, not say a word, smile and tell everyone I am fantastic and pretend there is no strange disease taking up residence inside my body. 

I'm perfectly health, thank you.  How are you?

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.