Wednesday, March 21, 2012

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'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."


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 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

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

Monday, March 19, 2012


I am always surprised to find out who has or has not seen the television interviews I have been in, or read the various on-line articles that my fellow PGAD friends and I have been in.

For instance, I recently tried to get in touch with my old OB/GYN doctor, but could only get a hold of her OB/GYN partner, who told me that neither one has seen me, or any other program on tv about PSAS/PGAD.

Same goes with the Women's Health center I recently visited, where the gynecologist told me she has never seen or read anything about PGAD, and said to me, "You probably know more about it than I do."

But the nurse practitioner out in the country has seen me on television several times, but the Pain doctor I am currently seeing has never seen any or read any of the articles.

My goal in doing the interviews and articles was to not only reach out to women, who, like me, thought they were the only woman in the world suffering from this tormenting disorder, but also to make the medical community more aware of it and to research it further. The latter is not quite there yet, but they have at least now "heard" of PGAD.

In case you have yet to see or read them, I am posting some of them below. PLEASE feel free to fwd them to your friends, esp anyone you know of in the medical profession. I wish I had access to the entire 2nd episode of 20/20, but cannot find it on their site, just the preview, which is good, but the entire show was very informative.

Please note that both the 20/20 videos begin w/ showing a scene from Grey's Anatomy with a female patient who has spontaneous orgasms. This is NOT the case with the majority of PGAD sufferers. It's very rare, in fact.

So anyway, here are a few links I'd appreciate you seeing and reading, and at the bottom is the Amazon link to the book that both Jeremy and I are in, which contains the info from the 2nd 20/20 interview.

First 20/20:
(at this website link above there are more news videos of other women with PGAD you should also watch.)
Second 20/20:

video platform
video management
video solutions
video player

in case video doesn't appear here's the link:

Fox News Article:

Never Satisfied: The Curse of Persistent Sexual Arousal SyndromeWritten By Jessica Ryen Doyle
Published April 23, 2008

MSNBC article:

MSNBC: Always aroused: A good thing gone awry

And finally, the book. we're in chapter two:

My second nerve block is tomorrow. Will let you know how it goes in a few days. Last nerve block it was sore at the sight of injection and coming off the anesthesia gave an awful headache that lasted about 3 days. Keep your fingers crossed and your prayers coming!

Sunday, March 18, 2012

some current peace, and an upcoming procedure.

since my last entry, something has changed, something within me.

i cannot single out what one thing might have made the positive shift, but i believe it is a combination of 1) all of those who have been praying for me and reaching out to me (thank you, sincerely, so very much) 2) a phone call Jeremy received from a friend who explained how Topamox had seriously effected one of their family members, making them suicidal --so Jeremy told the Pain Doctor he wanted me off of it ASAP because he became aware of the drastic from bad-to-worse change in me since i had started taking it, 3) my son sitting me down to ask me why i was doing so bad, and being so mature and compassionate upon hearing the truth, that he spent the next few hours with me, "to keep you company, and help get your mind off your pain, because i love you," and lastly, 4) a friend boldly, but lovingly, telling me in so many words, to allow God to give me the strength to fight and not let evil win this battle.

i cannot promise if this positive shift will last, but for this moment, i am enjoying the peace that surpasses understanding --even in midst of physical pain.

one frustrating situation that happened since my last entry, however, was trying to get in touch with my nurse-practitioner (NP), who ordered my pelvic MRI back in Sept of last year. i sent her several e-mails, which her assistant nurse responded to, not her. i cannot even tell you how ignorant the nurses replies were without my head exploding!

so after 3 days of correspondence w/ dim-witted nurse, i wrote one final e-mail which read:

I need you to please print and show the following letter and file to Mrs " ____" and tell her I need to speak with her directly, today.

Dear Mrs. "____",

I am writing you because I am requesting that you please help me to get the Radiology Department of Lexington Medical Center do another pelvic MRI at no cost since they obviously disregarded my broken and/or malformed tailbone in their previous two MRI's and readings, [they did 2 because the radiologist called me, admittedly saying they messed up their initial MRI] which my husband and I, having no insurance, had to pay over $3,000 for out-of-pocket. The caudal block, btw, has not proved to be effective and I am still in chronic back pain and my PGAD is worse than ever. Attached is a file w/ a list of information which should help our case.

Thank you so much, Heather Dearmon

i then attached a list of reasons why i needed another pelvic MRI, including my Pain Dr's finding my broken and severely bent tail-bone, along with several e-mails i received from the Doctor/Professor at Rutgers University (who has a very long title, including Adjunct Professor of Radiology) who i sent the pelvic MRI images to, and how he explained that the pelvic MRI's were inconclusive, taken from the wrong angles, and did NOT include my TAIL BONE!

Well by 4:30pm, my NP had not called me back, so i called her and left a message asking that she please call me before she left work, but she didn't call. she e-mailed me instead, basically shrugging me off, saying:

Heather, I am unable to write anything about the MRI since I don't actually have anything to do with the interpretation of it nor did I find the recent issues. I would suggest contacting the doctor who found the malformation and see what they can do. Thanks!

so i replied:

Dear Mrs "____"

i am seeing my Pain Doctor tomorrow, the one who found the malformation, but i'm not sure he can help me since you were the one who ordered the MRI, not him. i was hoping you could at least make a phone call for me to the Lex Radiologist with the info i gave you to see what they could do. but i understand. it's very hard for me, i am in chronic pain, and i feel alone and w/out an advocate to help me. but i won't bother you any more about this.

i will ask, however, if you would please at least call in my Birth Control to Wal-mart, which i requested a re-fill for 3 days ago, and has yet to be re-filled. By the way, your nurse asked if I knew the generic name for my birth control??? i thought i was the patient, and finding the generic name would be your nurse's job? i looked all over the my empty pack and even searched on-line, but couldn't find anything. The RX for is still on Wal-mart's Pharmacy file, so i would think re-newing it wouldn't be so hard?

Heather Dearmon

Wal-Mart's automated phone service called me 20 minutes later informing me my birth control RX had been filled.

thanks a whole lot. needless to say, i won't be going back to her anymore.

the following afternoon, Thursday, Jeremy took me once again to the Pain Doctor, so we could inform him that the caudal block he preformed 9 days before did not make any difference in my pain or PGAD. i also told him about the e-mail exchanges and problem i had with my NP in trying to get her to help me get another pelvic MRI. he seemed shocked at her response, and said it was a shame. i then showed him the e-mails from the Doctor at Rutgers, and he said he would also be willing to write a letter if needed, confirming my broken tail bone, if it could help me to get the Lex Radiologists to do another pelvic MRI, at no cost.

He then explained that my broken or deformed tail-bone is not like a normal tail-bone, which should curve under, but mine shoots off --like it was broken and bent at a severe angle to the left. this may have messed up the nerves in my pelvis, esp the ganglion impar nerves which are right below the tail-bone! so he scheduled me to have a GANGLION IMPAR BLOCK this coming tuesday, 3/20 .

the Ganglion Impar nerves is a cluster of nerves that receives pain signals from the tailbone, perineum, rectum, anus, urethra, and vagina.

A Ganglion impar block is a well-established treatment for chronic, neuropathic perineal pain from visceral and sympathetic pain syndromes. If you recall me mentioning before, the sympathetic and para/sympathetic are the nerves that control sexual function and orgasm.

I'm a little more nervous about this procedure than the last b/c the doctor said, "It's going to be a little tricky considering your broken tailbone." He explained how he actually won't be going through my spinal cord, but will come in from the side, to get to the ganglion nerves. i saw on-line how some doctors use these strange square-shaped needles. so please pray for me, that i will have peace and strength during the procedure, that God will guide his hands, and that the medicine he injects will work this time.

If you're interested, the link below explains in simple terms the function of the ganglion impar nerves, and how having a nerve block there might be able to help me:

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 and will be deleted before read. 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

Tuesday, March 13, 2012

the lost, lonely and frustrating search for competent doctors

i wish i could make a documentary to record the frustrating process i am going through in order to find and get help for my chronic suffering.

i need a small camera crew to follow me around as i scour the web, call different doctors' offices, talk to their answering machines or get the run around from their staff, go to expensive appointments and listen to what the doctors say (and don't say), listen as i read aloud the e-mails i send to my fellow suffering friends, maybe hear some of their accounts, just so the public could get an idea of how very difficult it is to find a doctor to help someone with my condition, Persistent Genital Arousal Disorder (PGAD), or just to find a doctor to help with ANY kind of chronic pain.

My dad had Small Fiber Neuropathy (SFN). 60% of SFN is associated with systemic conditions, such as diabetes, HIV, and vasculitis. The other 40%, such as the SFN my father had is idiopathic.

the definition of Idiopathic is: Of unknown cause, used primarily in medicine meaning arising spontaneously or from an obscure or unknown cause.

PGAD is far more rare than SFN, but it is also idiopathic.

Small fiber neuropathy affects an estimated 15-20 million Americans. Sufferers experience pain and burning sensations in their toes, feet, legs and hands. It could best be described as damage happening to the nerve endings of your skin's outer layers.

if you google SFN, you will find out there is no known cure. doctors prescribe anti-depressants,
anti-convulsants, lidocaine patches, and TENS UNITS. sound familiar? if you scroll down a few blog entries, you will see that i have been prescribed the same things for my PGAD.

if you visit a SFN on-line support group, you will see the ages range from people in their 20's to their 70's, and if you read their stories of how they suffer, how they cannot find competent doctors, medications that help, or doctors who give a damn, you would find their words are hauntingly similar to the ones posted by women in the PGAD on-line support groups i am in.

for months my father had seen many doctors in Atlanta, Ga who could not properly diagnose his pain. he eventually saw a pain doctor who was an arrogant son-of-bitch, which i can call him having spoke to the bastard myself. my dad and my family soon became very frustrated at the lack of help he was being given in Atlanta, so we decided to go to the Mayo Clinic, famous for their teams of competent physicians. i cannot recall just how many doctors he saw, but he saw a range, at least 5, from a neurologist to a psychiatrist, and other specialists, and only one out of those 5 properly diagnosed him. but you know how the story then it was too late.

if my father had not taken his life, he'd have had years similar to mine, with various doctors writing various medications --and he didn't tolerate medications well. all the ones he had been prescribed for the 3 months of his suffering, he had adverse reactions to.

it's been 7 days since my caudal block, and it is safe to now say it did not work. at all. my PGAD is the same as it was before. so today i will be making phone calls, trying to get through to my pain physician, trying to get through to my general practitioner to see if the idiots who messed up my 2 pelvic MRI's (and somehow missed my broken/deformed tailbone) will do another MRI at no cost, since it cost us more than we could afford in the first place. it's very hard to actually get a hold of my doctors, i can call and even e-mail them, but their nurses call me back, and there is waiting for more return calls or e-mails, and refills, and don't even get me started on the hell that is the Wal-Mart pharmacy!

a dear, old friend of mine recently sent me what she called a "now-famous article" (i'm assuming in the medical community) called, If You Have To Prove You Are Ill, You Can't Get Better: The Object Lesson of Fibromyalgia by Nortin Hadler, written in 1996, and it only further proved my point that the medical field, especially physicians, are still lacking in the two vital things most needed by their patients: a listening ear, and then an aggressive plan of action to end their patient's pain.

we who are suffering feel lost. i...feel...lost!

here i am, already suffering, but must build up the energy to not only FIND a doctor who MIGHT be able to help, but then it's up to ME to MOTIVATE these doctors to help me!

this is wrong, people! so fucking wrong, and such a fucking shame.

Sunday, March 11, 2012

art and poetry and music

this blog entry below does not desire any response, it is a simply a small collection of images and poetry i have found to be an expression of what is going on inside of me, and i am allowing you a glimpse, but not allowing anything more. it is not a giving up of hope, or a goodbye or anything for anyone to panic about. sometimes words and images and music can help us express our plight, and that is all this is.

Sirin and Alkonost – Birds of Joy and Sorrow, by Viktor Vasnetsov

i feel as though i am, now, like Sirin, the bird of sorrow on the left, and i was once, i think, like Alkonost, the bird of Joy on the right...and i miss being like her.

The Eye-Mote by Sylvia Plath

Blameless as daylight I stood looking
At a field of horses, necks bent, manes blown,
Tails streaming against the green
Backdrop of sycamores. Sun was striking
White chapel pinnacles over the roofs,
Holding the horses, the clouds, the leaves

Steadily rooted though they were all flowing
Away to the left like reeds in a sea
When the splinter flew in and stuck my eye,
Needling it dark. Then I was seeing
A melding of shapes in a hot rain:
Horses warped on the altering green,

Outlandish as double-humped camels or unicorns,
Grazing at the margins of a bad monochrome,
Beasts of oasis, a better time.
Abrading my lid, the small grain burns:
Red cinder around which I myself,
Horses, planets and spires revolve.

Neither tears nor the easing flush
Of eyebaths can unseat the speck:
It sticks, and it has stuck a week.
I wear the present itch for flesh,
Blind to what will be and what was.
I dream that I am Oedipus.

What I want back is what I was
Before the bed, before the knife,
Before the brooch-pin and the salve
Fixed me in this parenthesis;
Horses fluent in the wind,
A place, a time gone out of mind.
painting, Andromeda (1869), by Paul Gustave Doré

portion of poem, Andromeda Unfettered by Muriel Stuart

I am a thing of twilight. I am afraid.
Dull now and tame now; of myself so shamed.
Fortressed against redemption; visited
Of the old dream so seldom, as things tamed
forget the life that their wild brother leads.
I am a hurt beast flinching at the light.
I have been palaced from sun, and night
Runs in my blood, and all night's blushless deeds!

Eve, by Anna Lea Merritt

by Christina Rossetti (1830-1894)

A fool I was to sleep at noon,
And wake when night is chilly
Beneath the comfortless cold moon;
A fool to pluck my rose too soon,
A fool to snap my lily.

My garden-plot I have not kept;
Faded and all-forsaken,
I weep as I have never wept:
Oh it was summer when I slept,
It's winter now I waken.

Talk what you please of future spring
And sun-warm'd sweet to-morrow:--
Stripp'd bare of hope and everything,
No more to laugh, no more to sing,
I sit alone with sorrow.

OPHELIA: I hope all will be well. We must be patient; but I cannot choose but weep to think they would lay him i' th' cold ground. My brother shall know of it; and so I thank you for your good counsel. Come, my coach! Good night, ladies. Good night, sweet ladies. Good night, good night. (Hamlet, Act IV, Scene 5, line 2930)

poem by: Christina Rossetti (1830-1894)

I HAVE no wit, no words, no tears;
My heart within me like a stone
Is numb'd too much for hopes or fears;
Look right, look left, I dwell alone;
I lift mine eyes, but dimm'd with grief
No everlasting hills I see;
My life is in the falling leaf:
O Jesus, quicken me.

My life is like a faded leaf,
My harvest dwindled to a husk:
Truly my life is void and brief
And tedious in the barren dusk;
My life is like a frozen thing,
No bud nor greenness can I see:
Yet rise it shall--the sap of Spring;
O Jesus, rise in me.

My life is like a broken bowl,
A broken bowl that cannot hold
One drop of water for my soul
Or cordial in the searching cold;
Cast in the fire the perish'd thing;
Melt and remould it, till it be
A royal cup for Him, my King:
O Jesus, drink of me.

The Descent of Christ by William Blake

from The Hollow Men by T.S. Eliot

Between the idea
And the reality
Between the motion
And the act
Falls the Shadow

For Thine is the Kingdom

Between the conception
And the creation
Between the emotion
And the response
Falls the Shadow

Life is very long

Between the desire
And the spasm
Between the potency
And the existence
Between the essence
And the descent
Falls the Shadow

For Thine is the Kingdom

For Thine is
Life is
For Thine is the

This is the way the world ends
This is the way the world ends
This is the way the world ends
Not with a bang but a whimper.

<a href="" target="'_new'" title="'Florence">Video: Florence and the Machine - Never Let Me Go video premiere</a>

Florence and the Machine: Never Let Me Go

please note: any attempt to post comments/responses in way of unsolicited advice, 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 and will be deleted before read. 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

Friday, March 9, 2012

a little yeast corrupts the whole of the dough

i was a fool, perhaps, to open myself up, to stand and announce the tragedy, the pain, the struggle. i blame God, i suppose, for giving me a bold personality, and at the same time, making me equally frail. my words have made many panic. i fear i have scared some people, my friends, away --they have grown silent. then again, i have had many, many encouraging responses and many who keep reassuring Jeremy and i of their concern, love and prayers. but overall, it is lonely. i am alone in this. it is me, and somewhere there is God, close and at the same time, elusive.

Jesus was correct when he said that it only takes a little bit of yeast to work its way through an entire batch of dough --corrupting it-- so it is with a few heartless remarks: they presently echo louder in my mind than all the encouragement i've received, and my heart is burdened with guilt and pain, as is my body.

at this writing, it's after 4am on Friday morning. i am tired. i am so sleepy, but i fear sleep, for once i am there, i want to stay there. waking, getting out of bed is painful in every way. i mean every way.

today is only day 3 since my caudal. when i woke up yesterday, Thursday, i was quite aware of my PGAD, and my stomach immediately clenched, tears welled up and panic overwhelmed me. my bowels reacted to my anxiety, which forced me out of bed, and then i sat on the commode and cried. this is not an unusual morning for me, except that i just had a caudal block.

my daily chores are painful now too. my one way of staying in touch with the world --the internet-- has become more difficult as well --i cannot find a comfortable position to stay in for very long with my lap top, even with my "special crotchless cushion" because from my butt, all the way up to my neck is in constant pain. i can't even imagine going grocery shopping now. if i do, i would have to --no kidding-- ride around in one of those little carts, and i'm not sure i'm ready for that humiliation yet.

i feel like an 80 year old, and according to the bad voices from the bad comments that were made to me, i probably deserve to be feeling like i do. the comments were intended to motivate me somehow, i think, by making me feel bad about feeling bad --as if this were a choice i consciously made. as if i chose to have scoliosis, a deformed tailbone, to get PGAD, and that if i'd just taken better care of myself and would stop bitching about my situation, then maybe i'd get better, but if i don't get proactive soon and my pain gets to the point where i can't take it anymore, well, shame on me for the terrible legacy i'm going to leave behind for my son!!! this is the shit i got from a few people that i maybe get an x-mas card from once a year, if i'm lucky. in other words, from people who i am not in relationship with and do not know me.

the audacity of such comments infuriates me! i didn't plan on this! i certainly would never choose this! 17 years ago when i married Jeremy, and a year later when we had our son, this is NOT the life i imagined we'd be living, it is quite the opposite to be sure!!! but even in saying that, i know that through many of our trials, God has changed us for the better: He has made Jeremy and i closer, and our relationship with Jonah is better than it has ever been, so some of the bad stuff, i would not change. but my pain is just wearing on all of us...wearing us down.

i want it to be known that i'm sorry, i am, for all this "feeling sorry for myself." this is the dark night of my soul, no doubt. something God is taking me through. i am at the end of myself, you see. all i believed about Him, all the things i believed He was and does, has been called into question. and the hard reality i wrestle with every night and day is that He may or may NOT deliver me from this pain.

oh, how i wish i were the type of godly person who could say, "though He slay me, yet will I serve Him." but i am not.

ugh. i can almost sense the judging and wagging of heads (from some people) at the above comment, but you who may wag your head, you don't know. you are not here, inside me, feeling this chronic pain, or having had to endure the shame of years of unwanted arousal --oh, how i'd like for you to experience PGAD for a just a day, let's say a SUNDAY, to get a bit of sympathy --to endure being on the verge of orgasm while sitting in your nice little pew, rushing home because the feeling gets so strong all you can think to do is masturbate and relieve yourself, but after 10 consecutive orgasms the sensations only get worse. THEN you will feel panic overwhelm you as they realize that you may never again feel relief in your clitoris or penis, that it may burn with arousal every fucking day for the rest of your fucking life!!!...then, and ONLY THEN, can you judge me.

tomorrow will be day 4 since my caudal block. getting closer to day 5 w/ no change is of course scaring the hell out of me. but if there is change, you can be sure, i'll announce it --i cannot help it, you see, it's the way God has made me.

Wednesday, March 7, 2012

yesterday's caudal block

before the caudal block, they did sedate me, but i was not "OUT". darnit! the nurse said for a caudal block they don't put their patients completely under sedation so the doctor can communicate with me during the procedure.

when in the operating room, the dr pulls up the x-ray machine and says to me, "SOOO, you have broken your TAIL-BONE before???" "UM, NO!" I reply. "Well, you have either broken it in the past --it's quite severe-- or you have a malformation. I will take pics of it now to show you after the procedure."

The caudal injection itself was not so bad, but the medicine going in burned like hot acid.

After being wheeled out into recovery, the dr showed Jeremy and i the pics of my tail-bone (kinda like those pics from an ultra-sound) but i was still sedated and did not have my glasses on, so they just looked to me like pics of a weird shaped moon.

The doctor told Jeremy a tail-bone should come to a curved end, but mine looked like it had been sawed-off. now my question is: HOW THE HELL DID THE LOCAL HOSPITAL RADIOLOGISTS NOT NOTICE OR INCLUDE THIS IN THEIR REPORT WHEN I HAD MY (2) PELVIC MRI's BACK IN SEPT 2011??? (BTW, this is not the same place that did my 3 MRI's last month that were ordered by the Pain Physician that did my caudal yesterday. The 3 MRI's last month did not include my pelvis, but from my above my hips to my neck.)

OH, but trust me, when i'm feeling better i'm going to be ALL OVER THAT out-of-pocket $4,000 MRI done at the local hospital, b/c this is not the first doctor to say their MRI's were lacking!!! A doctor from Rutgers was the first to say it, and i have it in black and white to prove it!

today i feel like i have a hangover/flu (which they said is due to the morphine mix sedation), and my upper butt hurts. so far, i feel no difference/effect from the caudal on my PGAD, but they said it can take up to 3-5 days to see results. i will let you know if/when i see results.

please note: any attempt to post comments/responses in way of unsolicited advice, 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 and will be deleted before read. 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

Sunday, March 4, 2012

List of Dr's and Meds over 17 years

Dear Friends,

Some of you have made suggestions for different kinds of drugs or doctors for my PGAD, which is very kind, so I figured I'd just create a list (below) to let you know what kinds of dr's I've seen and medications I have tried. I made a similar list for my own Pain Physician, and this last time I saw him he said, "It pretty much seems like we've exhausted all prescription medications that might help you." I most certainly agree.

Some of you have also suggested I see nutritionists and chiropractors, and I truly want to, and plan on doing so once the PGAD gets under control again. Trust me, I am active on the PGAD support group board, and read up on all the different approaches these women take. Many have seen nutritionists, and seen little-to-no results. Some have also seen acupuncturists, but to the ones who have, that I have been in personal contact with, it has made it worse for them, because for these women, even someone stroking their arm can bring on their PGAD.

I've heard a lot about acupuncture from some of you too, and I have had acupuncture done several times in my life, but it was before my PGAD. I do believe that acupuncture is wonderful for some disorders, but it not a cure-all. It did not help my father, but made his symptoms worse. Why? Because the nerve sheaths IN HIS SKIN were breaking off and disintegrating, so sticking needles in those already burning, breaking-off nerves might not be a good idea, right? If you read up on Small Fiber Neuropathy, as I have done for years since he passed, and read the testimonies of many suffering w/out help from their doctors (the stories sound so similar to those on the PGAD board it is astounding) acupuncture has not helped any of the sufferers.

I do not want to hurt any one's feelings, honestly, because I know all of your suggestions have been well-meaning and come from a place of love and concern, and I appreciate that, I truly do.
The truth of the matter is, I am currently doing all I can to get through a day, but right now my life is debilitated by chronic PGAD and back pain, which causes me anxiety and depression, so much so that for the past month I've barely been able to keep house or even go food shopping. So signing up for a yoga class, or going to see a chiropractor, nutritionist or acupuncturist that may or may not bring me relief for 5 or so months is beyond what I am currently capable of doing. I need relief. Now. I hope you will not judge me for being so weak. I'm praying and fighting thru each day with all the grace that He gives me, and I am going down the path that I feel (and hope) He is leading me on, which seems to be with this very compassionate and pro-active pain physician.

If the pain physicians options do not work, then, I promise I will try out alternative methods, and if the pain physicians options do work, I still want to see a chiropractor and nutritionist because I want to be in optimum health so I can live a full and happy life.

In any case, here's the list I mentioned at the beginning of this blog, just so you can get an idea of who I've seen, and what I've tried:

1) Types of doctors I have seen over the past 17 years, and in each field (except psycho-therapist and chiropractor) I have seen at least two or more of:

-social worker/counselor
-christian counselor/therapist
-general practitioner
-nurse practitioner
-and currently, a pain physician

2) The following are the medications/therapies I have been prescribed over the past 17 years, the last 12 have been prescribed over the past year, and the bottom six I am currently on, although the doctor has me weaning off the Topamax:

-Female Labia Swell Spot
-Detrol LA
-Lidocaine patches

Okay, now, I hate to have to bring back my "blog-comment rules" that I had in place last year, but I see now, for my own emotional well-being, I must, so please read the following and respect it.

please note: any attempt to post comments/responses in way of unsolicited advice, 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 and will be deleted before read. 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

Saturday, March 3, 2012

my upcoming procedure: caudal nerve block

after my last blog, and sending it out to over 100 of my friends and family, i have to say that the response i received was overwhelming. 98% was extremely supportive, sympathetic, and encouraging. the other 2% ranged from psychotic berating to well intended advice that was actually more hurtful than helpful. but that's okay. that's humanity for you, and i've received the good and let the other go. at least it is a testament that there are MORE compassionate people in the world than not, right? so that's a wonderful revelation in itself!

the update on my PGAD is this: on wednesday, the 29th, Jeremy took me to see the Pain Physician, and we were told nothing significant appeared on my 3 MRI's that would give cause to my PGAD. i kinda lost my shit at that point, crying and blabbering on about wanting to end my life, and the doctor became concerned, but thankfully Jeremy spoke up and said, "What's she's saying is that she's afraid she's not going to be heard, like her father was not heard, about the urgency of ending this pain." the doctor then said, "Alright, I can understand that. What I was about to tell you is that we can schedule a caudal nerve block for this coming Tuesday, the 6th."

he then explained that a caudal nerve block, which he will inject via live X-ray into the base of my spine, will go into my sympathetic/parasympathetic nerves --the nerves that control sexual function. if the first injection works, then it means we have found the nerves responsible for my PGAD, and then i will have another caudal block on the the following tuesday, the 13, and another on tuesday, the 20th, and the block may give me relief for several months, until i have to have them done again.

here's the scary part, if the caudal block does not work after the first injection, it means the sympathetic/parasympathetic nerves are not the nerves causing my PGAD.

my pain doctor has other plans in mind if this is the case, something like an InterStim (for people who have an overactive bladder) but would be placed in a different part of my body to block the other nerves...whatever they are called?

and if we don't do that, then we may go a different route: a dear, old friend of mine contacted me recently and told me her husband has a close friend who is a uro-gyno up north, and he has seen great success using Botox in women w/ PGAD. i asked my pain doctor if he'd be willing to talk to this uro-gyno if the caudal block fails about trying out Botox, and he said yes.

so there is hope...but there is also fear. hope that one of these options will bring relief, and fear that there may be a lot of suffering in between the trials and errors, and i am already weak, so very worn down...but i thank God for you, my friends and family who continue to pray for me and reach out to me. it is your love that is sustaining me.

i promise i am going to give it all i've got, and exhaust every method out there for as long as God gives me the strength to do so.

so please be praying for this tuesday, that God, in His great mercy, will guide the doctors hands with that long needle, tap into the right nerves, bless the medicine and give me the much needed relief i long for.

i have hope...but my anxiety seems much more powerful. my trust in God is near empty. but i don't think that's unreasonable, either.

(3/4/12) CORRECTION to the above: my caudal blocks are NOT going to be one injection every week for 3 weeks, but one injection EVERY 3 weeks. Jeremy informed me of my mistake today, and it just broke my heart. one, because i thought i was getting a quick series of intense medicine, and two, because it's obvious my brain is still not processing information clearly. i suppose that's typical for depression and the handful of brain-fog RX drugs i take everyday. anyway, just wanted to let you all know.