Monday, April 9, 2012

Not complaining. Another 48 hrs with no sleep?

Ya know how everyone asks "how are you?" when your sick. Well if you really want to know, keep reading but if you are just being curteous the my response is "I'm alive," as I ponder whether or not I really am.
Yes I think it is highly likely that I will be completely wired to the point where I can't sleep even for one minute. Last night I was lucky to get one hour of sleep which was nice because it felt like four. I'm so used to waking up every five minutes when I do sleep that when I saw I had slept an hour I was happy, and sad. Suffering. An hour is not long enough to sleep. Sleep will always eventually come to save you from your Nightmare life. Most of the time sleep lets my brain take a break from the chronic annoyance of the pain I feel everywhere. Even the most terrifying dreams bring relief as they completely distract my mind from the physical, emotional and mental anguish.

Oh Happy Easter!

After my one hour of sleep yesterday I woke up and took my long list of medications and went to Church. It is so hard for me to sit through church that it feels like im becoming an Easter/Christmas only Mormon. I barely made it from the car to a pew and that's when I knew I was herxing again, after two weeks of iv rocephin a few days of doxycycline, valtrex, diflucan. Will soon be starting mepron and when I gain a few pounds I have to start the antibiotic from outer darkness; Erythromycin. Today has been my second worst day of herxing, falling behind to my herx after taking erythromycin. I have three witnesses of that herx who will attest that I was inches from death that day.
Back to Easter though, I went to church seeking something. Probably hope. And to get all the welcome backs and cheek pinching out of the way. I just moved back into the ward I spent 18 years of my life in so I thought that for sure I would be stuck in the chapel for an hour saying hi and shaking hands with people who had prayed and fasted for me. Luckily I must have looked physically awful and people understood that I was in no shape to chat or have my hands swell up from bone crushing hand shakes. I can barely open my chapstick by myself so I'm not going to shake hands firmly with anyone. I was grateful because people acknowledged us and smiled and knew that we needed to get home. I really appreciate that kind of respect to someone's privacy. I was coherent about the first fifteen minutes of church and as we walked in I saw my non blood brothers mom, looked at me and could tell I was not well then she smiled and got up and bore an honest testimony about sorrow and misery, betrayal and guilt. She has lived in hell and darkness and I think she bore that testimony just for me. She would never be the type to sit me down and say all those things, but I still knew she was talking to me.

I went to church seeking something. Something is what I got, but I could never explain it because even I don't know what I think that something was.

Her testimony is about all I remember, except a few people saying hi as we slowly left the building as I creeped back to the car. One guy even had the nerve to poke me as he shouted "hey, good to see you."
Oh man did that hurt especially with this herx. I immediately responded "you can't do that to me," as I grabbed my side in agony.

I got home and laid out in the sun(with long sleeves and pants) even though I know the sun is not great for me right now it just feels so good to be warm sometimes. So I get really warm as I try to protect most of my skin with clothing.

After roasting in the sun for awhile I stumbled back inside and plopped onto the big blue couch where I remained for the next 4 hours before I absolutely could not bare the joint pain even with strong medicine and strong anti anxiety meds as my skin was crawling like I was going to live through another opiate withdrawal.

So I crawled up the stairs and soaked in a hot bath and read. Finally a little joint pain is leaving my body.
I got into bed and continued reading and I could not concentrate so I laid in bed unable to sleep in a half coma, aware of everything around me but having absolutely no thoughts running through my mind. I stayed in bed for four hours this way before my wife shook me out of it and I was able to get up and take more pills and try to eat.

Some nice friends of ours in the ward brought us dinner and I held it down!
Not much else has happened since then, just been trying to layer natural sleeping aids hoping eventually ill find some rest. Pretty sure I will make it 48 hours with no sleep for the second time in two weeks, in your human time. Feels like two decades to me.

Tuesday, April 3, 2012

Is there any other way?

Although my future could still be dim or bright

I'm done stressing about the end of the show 
I've had dozens of doctors guessing which way I should go
It's taught me one thing I want you to know

Trust yourself, your enemies are stealthy 
When all feels lost and you are unhealthy
I promise you'd trade anything, even living wealthy

Doctors offer up a helping hand to extend 
But it's made up, all pretend
As you beg for your body to mend 

Have you ever felt like the Haitian's after an earthquake? 
There's a reason we're called "patients," mines nearly out, I only keep on for family sake
Sitting in their waiting room stations I'd wonder what mine would be like if I soon had a wake. 

Is there any other way?
You got answers? Let me know

When we are born we all start dying
Some of us are called to do a lot more crying
Like our tears are being siphoned 
Resistance is futile, I ain't lying
Out of our eyes salty drops come flying

I force myself to believe there is a purpose 
Especially when it's not apparent on the surface
Often the pain is in too much surplus

It's the one thing that makes my game change
Can't cope with the wider emotional range
I feel looney and all deranged

Is there any other way? Got answers? You know what to do

Stand up proud and shout the truth
Join me before more of us lose our youth
No you say, fine I'll box them bare knuckle, it's okay, I'm willing to lose a tooth

Or two,
When I know what is just and true
Helping others and myself escape the blues
Wondering when our bills will say "no more dues" 

To be paid,  you fought and you stayed
When you could you played, but it brought you to your knees in pain, perfect position for praying, 
But your body usually ended up laying
I've prayed and I'm just saying

It's hard to let go and look above
First you must think and say "God...? What's up?" 

It is okay to question Him
He has heard it again and again
Even from His own Son 
Who asked if there was another way for His work to be done
So state all your doubts, shout and scream them loud
That is how answers come about
Turn in your card that reads, "proud"
Go. Follow Him, away from the crowd
The Savior was perfect and He asked God too, so I know he won't mind when you do. 

"Heavenly Father, is there any other way to finish what You want me to do, or is this the only way for me to return to You?" 

Monday, April 2, 2012

Ticked Off

Ticked off

I think its about time I write this rhyme 
When I'm done I'll see you in hell Lyme. 
Four years to be confined 
As a prisoner in my own body, trapped in my dreary room,
Left to my thoughts of imminent doom,
Stuck in my black hole of gloom.
That hole is mine, and ONLY MINE
No one could ever find it even if they followed the signs.
It's too dark for the human eye to see,
Which is why I am the only one that can find that black abyss.
You'd walk feet away from it and still have it missed.
I watch as others pass by and can't help being pissed. 
How did I get sucked in?
I was busily engaged in a good cause,
Now every night I pray my heart will pause,
When it doesn't I want to end my life with my own claws.

Think I could scratch hard enough to bleed out? 

If you consider that I'm a pout
Say it to my face, I'll educate you with a quick shout.
Tell me you know how I feel and I'll laugh in your face.
Say it again and I'd make sure my pain would be real to you.
If only my fists could cause as much pain as I am in,
I'd use them to get back at some doctors
Who'd rather let me die then fight this disease with me and win. 
What happened to that Oath? 
I have kept mine, is it wrong to feel deserving of a reward, relief or both?
Or wrong to be angry at receiving neither? I don't think so,
But you might feel I'm bitter.
Let's talk after your life's been in the shitter.
Good riddance til then and have a simple life.
I hope we never talk and you won't have to live with this strife.