Divinity comes in many packages

So I've spent many days this past week in bed with pain and a few out of bed, sitting upright which has been really cool.  I found a bag full of these highly, overly upholstered pillows -- you know the ones you see in magazines or store fronts to make the bed look super luxurious or classy but there are so many of them it cuts the lounging area in half -- those kind of pillows. My parents must have put them down there before they died.

Oh you don't know. My parents died within 6 months of each other 3 years ago and they willed the house to me.  I'm still finding things of theirs  mine and so much of it is from my childhood. Things I thought I would never see again.  It's been a strange, wonderful, confusing, profound experience to say the least.

Back to the pillows. They are the most awesome thing in the universe (next to pain pills) and if I knew who created them I would kiss them full on the lips. I can get so comfortable with these suckers that I actually fell asleep sitting up until 200am one night and wasn't sore.  Anytime I can do anything without pain is a good thing.

Well, I've been putting off writing because I've had a few hospitalizations for Trigeminal Neuralgia.  It's a severe and rare nerve disorder in the face. The medical community refers to it as the "suicide disease" because more people kill themselves from the intensity of the pain from this than any other condition known on the planet.  I'm trying to get neurosurgery for this condition, separate from the tumor.  I need it fixed. Like yesterday.

Yep. And I have it.  *Sigh*  I'm done asking "why". I wish I were done with the anger and feeling the guilt. I feel guilt still from the tumor and I've had that since Nov 2011.  This just adds insult to injury.  I fear for all I'm taking away from my children.  People tell me I could be giving them something through this but I don't see how that's possible.  Often I hear that my condition has traumatized them daily and that makes me unbearably sad and guilt ridden. How do I take the good from this? How do I find the beauty in this?  So many tell me that they could not go through this.  But then what would they do?  Kill themselves? Of course not! They would go every day, take their 9 pills in the morning, 13 at night and any in between if needed and live their lives.  People underestimate their own strength. I know this. I have days where I feel totally and utterly broken. It takes me days to put the pieces back together.

I have few really special friends that I turn to in these instances who can truly help me. They just know what I need intuitively.  And I am beyond grateful. there is no pride in illness and I let that go a long time ago.

I'm in the library writing this and one of my sons keeps giggling near me from whatever he's watching.  I will get that sparkle back in my eyes. I will. And until then --- I will SO THOROUGHLY enjoy his every, single moment.  He and his brother are my gifts from God.  Every moment I breathe.

Bless all of us that they find a cure.

Still Searching....

Enough

Another ER visit three days ago. After hot pads and meds and water and rest and trying to sleep and praying --- oh Sweet Baby Jesus knows how much praying -- then came a bounty of excrutiating tears with the searing pain lasting for minutes. Then hours. Then one day.... Oooh okay. One day down, I can do this, I can God thank you for the strength for 24 hours. It's one day LESS than I will ever have to feel. Thank you, God, thank you. Okay now it's two days. Vision is really wonky. Blurry at times. So much pressure behind my eyes I think they will burst. Ok where are we..... 76 hours, 43 minutes... Crying now. Totally irrational. In the shower. Two panic attacks under my belt and my heart is racing. Thank God I have inderal to slow it down. I'm moving so slow. I can't think straight. I'm sobbing full force, snot running down my face, uncontrolled. I eat my third bowl of cereal because I want for nothing else. I get back into bed and decide its time to go to the ER.

When it hits that I'll go, they will give me my sanity back in the form of a pharmaceutical, it will wear off in 4-6 if I'm lucky.

And I'm so angry, feel so enraged that I wish I could scream louder than the world could take so that everyone would understand a piece of the suffering of what this is like.

Damn, I need some chocolate.