what to do? i wish i knew.

i may be posting this prematurely, as i just had my Ganglion Nerve Block done, at this writing, let's see...17 hours ago, but for continued "document" sake of this journey, i am copying and pasting from 1) my FB statuses written 14 hours ago, and then 5 hours ago, along with a link i provided at the end of some wonderful, loving responses from my friends, 2) a message i wrote to friend just a bit ago and 3) a song that sums up how i feel at the moment about this disorder, the pain, and the emotional toll this is taking on me and my family, and how i wish things were not as they were, and that i knew what to do...if anyone knew, really, what the hell is causing this disorder and what can be done to resolve it, once and for all.

14 hours ago:
"procedure went well, so the doctor says. it took a while, he had to go thru inner scar tissue by my tailbone. i am in pain at the sight of entry...it's all swollen and can't get comfortable.still pretty sedated and am going to sleep now. thanks for prayers and well-wishes."

5 hours ago:
"i went to bed right after my last post, got up after 3 hours with an intense f'ing headache, so dizzy that walking from my bed to the bathroom was like walking on a ship on the heavy seas, and went back to bed. Now i am wide awake at 12:30am, my head KILLING ME so much that i'm nauseous. everyone is asleep, i am alone, and to my GREAT DISMAY, my PGAD has flared up WORSE than it was BEFORE the nerve block. oh God. i'm trying not to freak-out, maybe, maybe God will be kind and i will be better tomorrow. but dammit, just fucking dammit..."

1 hour ago:
"thank you all for your responses. i so appreciate them. i did find this site about WHAT TO EXPECT after having a ganglion impar block --why my DOCTOR didn't give me this info, i can't say? he had a busy day, i guess.

anyway, it's given me a ...glimmer of hope, but beyond that, i'm just surrendering it to God all-over-again.

this is what the site said:

What is a ganglion impar block?

A ganglion impar block is a procedure used to reduce some of the symptoms of chronic pelvic or rectal pain by blocking nerve impulses. The ganglion impar is a structure located at the level of the coccyx. The nerve block can be diagnostic or therapeutic. One of three things will happen:

1.The pain does not go away, which means that it is probably not coming from the nerves at the site of the injection. This is of diagnostic value.

2.The pain goes away and stays away for a few hours, but then returns. In this case, the block is also of diagnostic value, as it means the pain is probably coming from the nerves at the level of the injection, but the steroid was of no benefit.

3.The pain goes away after the block but returns later that day and then improves over the next few days. This means that the block was of therapeutic value, as both the anesthetic agent and the steroid had an effect on the pain.If you experience some benefit from the injection, it may be repeated."

site: http://www.lahey.org/Departments_and_Locations/Departments/Pain_Management_Center/Nerve_Blocks/Ganglion_Impar_Block.aspx


this afternoon, when i went to bed after the procedure, and only got up once for Jeremy to get me a cold pack for my back and head, my dreams were about doing battle with demons...and not demons like gargoyles, but all kinds, from beautiful seducing demons, people possessed with demons, ghost-like demons...most very Tim Burton-esque.

but every time i encountered one, i told them that they had to go, that in Jesus Name they could have no power over me...but as the words came out, i felt my faith inside me falter...did i REALLY believe that Christ was more powerful than these demons.?

i don't know what happened to the demons, because with each demon i encountered and confronted, one after the other, i didn't know whether they had been rebuked and "gone to the pit" as i commanded them to do, it was like "commercial break" and the next scene i was confronting another, and the last, before i awoke, was a whole house-hold full of various demons, and that's when i awoke to my symptoms being worse.

i've gone to a variety of healing services over the 17 years of having this, but more so in the first 5 years when it was chronic, as it has been for the past 6 months. some services were quiet and intimate with a very strong presence of God, and others --more than i'd like to say, by a variety of charismatic people from Texas to Florida-- involved "deliverance" ministries, where they tried to cast out from me every demon they could name. obviously, nothing changed.

i do believe in the healing of God, and here's a quick story about my own account of being healed by Him: about 3 months before i met Jeremy, i started suffering from sever upper stomach pain --i would drink an entire bottle of Maalox and still be bent over in agony.

one of Jeremy's and my first dates was to the ER for this! we got married, and on our wedding night, i had the sever stomach pain...talk about a bummer of a night. finally i was sent to a specialist who put the long cord with a camera down my throat, and found i had a very slight hernia, but the doctor didn't think it should be causing my problem.

so, on our way to the TN mountains for our honey moon, we visited Jeremy's family in Alabama, and i had the stomach pain after lunch, went into bed and began crying and begging God to help me. suddenly i felt his presence, and actually said a loud, "Oh, hi. You're here, Lord." the door opened and in came Jeremy with his Uncle. His Uncle laid hands on me, prayed gently for my healing, and even to my own amazement, i felt the pain drift away. since that day, i never had those stomach pains. sure, i get indigestion sometimes, but a Maalox tab takes it away now.

of course, a few weeks after my stomach being healed, i was pregnant, and 3 months later i got PGAD.

i almost wish i had the stomach pain over this, or some other kind of pain. PGAD is just such a humiliating disorder, and it's still so"new" to the medical field, that there are little doctors know about it, or how to treat it --but that seems to go for most chronic kinds of pain, as i have been finding out.

hell, give me migraines i can take codeine for, or let my pain be something fatal, like cancer (which i hate to write and don't want to offend anyone by doing so) but if it were fatal, i'd at least know that 1) doctors would take my pain more seriously and 2) i'd know there was an end in sight for my suffering.


song, "I wish I knew" by Sharon Van Etten


~~Lyrics~~
I wish I knew what to do with you,
But the truth is I ain't got a clue,
Do you? Do You?
I wish I had an idea of what I need,
But we, oh we, can't know and that's okay,
That's okay.
I wish you'd understand, I wish that I could know,
The truth is I have no idea.
I wish we could just run around
And only worry about right now,
I hate to admit it but I don't know shit
And neither do you, do you, do you,
And that is good enough
For me, for you, for now,
As long as we can talk about it.


FOR THE LOVE OF GOD, PLEASE NOTE: any attempt to post comments/responses in way of unsolicited advice, criticism, analysis, words-of-wisdom, and/or correcting of my expressed opinions, thoughts or emotions on this blog, or worse-case-scenario: berating and condemning me, on Facebook, or via e-mail are not welcome! THE ABOVE LIST OF RESPONSES ARE TERMED "INVALIDATION". LOOK IT UP. IT'S A FORM OF PSYCHOLOGICAL ABUSE AND I WILL NOT TOLERATE IT. only positive comments or messages with uplifting, encouraging content, such as, "thank you for sharing" or "i will be praying" are welcome, as well as the ever-so-confirming "like" button on FB. thank you for being gracious. much love ~Heather