Chronically Fab

Today I honestly I had no idea what I was going to write about. That's the beauty of what I like to call "secondary amnesia".  I try to blame it all on the medications because I truly hope that someday, when I'm off all of these fuckers, my mind will be back to level of normalcy. Well. Normal for me anyway. I was on 13, now I'm down to 11. That's exciting.

It's a little intimidating to someone watching me do my med routing. It kind of like a bowl full of lucky charms and I put in a spoon and swallow them all down... Mmmmmm yummmmy yum!



Patients with chronic illness get very good at taking medication. Thirteen pills at a time of varied sizes is where I capped off. Anything beyond that made me feel kind of nauseated.  Nothing like lucky charms. They were not magically delicious.

I went to my pain doctor this past week and found out I have a condition called Trigeminal Neuralgia.  It's called "the worst pain known to mankind"... oh how I wish I had a sound file that was loud and booming and echoey.  Very dramatic.

But. I can attest to the pain part. It hurts more than anything I've felt up to this stage of my life. And it's not this temporary "ok I can breathe for a few moments and I know there's an end to it" kinda pain. We all have had that. We step on something beyond sharp outside that surprises the hell out of us.We fall down and are totally shocked at how badly that twist in the ankle makes us think we broke it and the pulsation of the blood rushing to the appending is convincing us at alarming rate that it's ripped off our leg.  But then we stand up and bear weight, walk a few steps and realize that yes, while it hurts like a mother, after a couple of days of ibuprofen, some babying and Jamesons in front of the fire, you should be just fine.

It's the kind of pain that, for me, is constant. It never leaves me. Never. Oh those lovely pain scales.

"Where are you Ms. Edwardson on a 1-10? One being no pain (which makes no sense because a zero would make far more sense) and a 10 being the worst pain you've ever felt (which is so subjective and stupid that I truly think that needs to be defined. I had a physical therapist once say a 10 was being burned alive. I thought that was a bit much but at least I knew his parameters).  I say the same thing I'm always at a 7 and then it bumps up to a 10 when I'm writhing around, crying, screaming, can't talk and am obviously suffering.  I had to go to the ER three weekends ago because the level 10 had been going on for 3 days. I couldn't take it. So they gave me pills of torodol. HAHAHAHAHAHAHHAHAHA! Ahhhhh hahahahha.... .....wipes tears from eyes.... ahh hahahha That is really funny. Oral Torodol. So I had to wait 40 minutes for a medication that wouldn't work. I asked for an injection and was offered,
are you ready....TY-FRICKEN-NOL!!!  Yes this for the worst pain known to mainkind. I'll remember that if I ever see someone with an arm ripped off by a bear attack. 'Excuse me sir, I hear tylenol will do wonders for your pain."

I knew I was totally screwed at that moment. I started having sinister thoughts of taking over the joint....How to I get into the medicine cabinet? How do I get the code? I used to be a medical social worker. Nurses never pay attention to who gets hired and starts their shift and they give away codes all of the time without even looking up....

Not good.  Is it really too much to ask that the medical personel that are treating the patients in the ER could at LEAST look up the condition prior to tossing pills my way when I might, oh, I don't know, need an IV of dilaudid to manage pain??

So back to treatment of TN. The meds that treat it, I'm already taking and clearly aren't doing anything for pain control. Doc put me on tegretol which is the number one pain management drug. I'm wickedly allergic to it so that throws that out of the door. I get to do a fun block procedure. I did one before of the occipital block. On a scale of 1-10 of it working it was a -20. it did nothing.  This time they are putting a numbing agent on the back of my mouth on the nerve.  Before they injected the nerve with direct numbing agents and it didn't do anything. Not sure why this is supposed to work when the other, more invasive one did not. I think we are grasping right now.  I'm going to see a surgeon soon and my hope is that he cuts my head open, puts a gelled silocone sheth between my artery and nerves that are causing this business and if necessary, clip the nerves off if need be.

So that's my story and I'm sticking to it. I've had a stupid cold for the last two weeks.  I didn't know that coughing --- C O U G H I N G  --- triggers TN pain.  I think I have bronchitis.  It's been good being on all the drugs. Wow 15mg of norco?!?! Holy shit! I had no idea especially when mixed with klonopin, inderal and the other anti spasmatics. I have no tolerance to anything!!!! I can be in that intense pain but be relaxed. Sure I'm bawling my eyes out, rocking like a baby and screaming into a pillow but I know that relaxation of a sort is coming soon.

So here's to brain stem surgery coming soon....And maybe getting part of my mind back...