2012 Losses and Blessings

I really don't want to write this entry. I really don't want to review this past year, because just a short glimpse back over my shoulder brings tears of both pain and gratitude, for there was loss and despair mixed with hope and blessings.

Therefore, I have decided --for your sake and mine-- to review the past year, month by month in a no-nonsense, one-to-two sentence manner. So here goes:

January: My family and I love living in our new home in Columbia, South Carolina, and we are thankful to God for such a blessing.

February: My PGAD worsens, so I have three MRI's that reveal nothing. I throw a party for Jeremy's 37th birthday in which we are surrounded by dear friends and family.

March: I have two unsuccessful nerve blocks. I try new medications, but my PGAD is unrelenting, so I set a date and make a plan to take my life.

April: My thirteen year old American Bulldog and constant companion, Sarah, dies the day before Easter. I do not sleep in my bed for a month, because I miss her sleeping beside me.

May: Jeremy gets me a new puppy, Hannah. I find a local, Christian doctor, Dr. Redmond, who specializes in Pudendal Nerve Damage and I am tested, but test is negative.

June: My friend Gretchen tells me she is going to kill herself because of her PGAD. I contact many doctors on her behalf, but none help.

July: Dr. Redmond and I begin to discuss possible Myobloc (Botox) injections for PGAD.

August: I start a fundraiser for Gretchen to get her medical help. I quit smoking cigarettes every day... only now and then do I have an occasional one or three.

September: My son turns 17 (!!!) then I turn 39, so my dear friends take me out to dinner to celebrate just a few days before I have Myobloc injections. I quit eating gluten, artificial sweeteners, dairy, and start seeing a wonderful, female Christian counselor.               

October: By the month's end, the Myobloc is helping to reduce PGAD symptoms and urgency, so I start to have hope again. I join a wonderful bible study with my dear friends.

November: We (Jeremy, Jonah, Chris, Chopper, Hannah and I) go on a family vacation to Asheville and have a truly blessed and wonderful time, despite the black bear. I start planning a Hobbit Holiday Celebration for next month.

December: On the 1st of the month, my friend Gretchen commits suicide right after her interview about PGAD appears in the Tampa Bay Times. On the 15th we have the Hobbit Holiday Celebration with our beloved family (my seester and nephew) and friends, and then we have a lovely Christmas day --just Jeremy, Jonah and I.


There is actually more to come this month, as later today Jeremy's family will be arriving to spend a few days with us and welcome in the new year.

Ooooh, the New Year! 2013. I will not do the stupid thing, as I have done before and say, "This new year will be better than last!" No. I don't expect it to be. I actually expect more good and bad events to occur, but in what proportions, I fear to guess.

I do know, in the new year, I will continue to love God, see His work and love in my family's and my life. I also know I will continue to have times that I yell at Him, ignore Him and will be utterly confused by Him.

My only prayer for this coming year is that I will be more open to inviting Him into each and every facet of my life, whether joyful or painful, and that I will grow in the knowledge of His love for me. I pray the same may be for you.

Mr. Huckabee, I disagree.

The video below of Mike Huckabee has gone viral on Facebook, with Christians liking and sharing and amening, and I have to say, I am sadly disappointed.

If you haven't already watched it, go ahead and play it below, and then I will explain why Mr. Huckabee's message contains hurtful, bad theology, in a tragic time when the world needs truth.





At first, in the video, everything Huckabee says seems right on. He says we can't make sense of what happened in the Connecticut shooting at the Sandy Hook Elementary School, and he says that "Evil has visited this community." Very true.

What follows in Huckabee's answer to 'Where was God?' is where Huckabee's message takes a tragic nose-dive. Huckabee states that "For 50 years we have systematically attempted to have God removed from our schools, our public activities, but then at the moment we have a calamity, we wonder where He [God] was?"

First of all, Huckabee never defines who "we" are. Is he talking about Christians, non-Christians, or both? We don't know, and never find out.

Then Huckabee goes on to say (or make the accusation) that it's not simply the fact that we have taken prayer and bible reading out of school, but that people sue a city for having a manger scene, memorial crosses are taken down, Christian businesses are told to surrender their morals.

Now, just what is Huckabee referring to here? Could it be, oh, I don't know, persecution? Yes, what he is referring to is called persecution! So, we have some persecution coming against Christians in America? Well, praise God! Although, if we look at the examples of persecution that Huckabee sites, well, they are minor to what the first Christians experienced (being stoned to death, boiled, eaten by lions, etc.) or even what other Christians in other parts of the world are going through!

Persecution, my Christian friends, is not something that should shock us, in fact, Jesus said, "Blessed are you when people insult you, persecute you and falsely say all kinds of evil against you because of me." (Matthew 5:11)

And why would we, as Christians, ever, ever expect the world to accept our beliefs, or even be glad to support us? Jesus told us, "If the world hates you, keep in mind that it hated me first." (John 15:18) Then, 1 Corinthians explains that unbelievers cannot comprehend Christians beliefs: "The man without the Spirit does not accept the things that come from the Spirit of God, for they are foolishness to him, and he cannot understand them, because they are spiritually discerned."

Huckabee unfortunately continues by declaring, "We carefully and intentionally stopped saying things are sinful, and we call them disorders, and sometimes we even call them normal." Wait, did Huckabee just switch gears on us? Again, he says "we" but does not define who he is referring to! Since he mentioned the word "sinful", which is used mainly by Christians, are we to assume he's now speaking to us? Accusing us, too?

Now here's the real kicker: Huckabee says, "...we have escorted Him right out of our culture... and then we express our surprise that a culture without Him actually reflects what it's become."

What? America is a culture without God? I do not know what delusion Huckabee is under when it comes to the history of our American culture, but let me assure you, America has never been a "Christian culture." I'll say it again: Never. So go ahead and dismantle that lie right now. Ever since America established itself (and at the cost of over a hundred-thousand murdered Native Americans) we have had a plentiful share of war, murder, rape, and sadly, school shootings.

Yes, school shootings and massacres are nothing new in America. As far back as the 1700's, through the 1800's, 1900's and up until now, we have recorded, historical accounts of school shootings. This includes the time period when prayer and bible reading were allowed in public schools.

Following Huckabee's outrageous claim about our culture, he adds insult to injury by saying He believes God "did show up" at the shooting, as if God was not already there! What a horrible thing for Huckabee to insinuate! The Bible assures us that God has been present with every person, in every situation, even in every murder from the time Cain killed Abel! In Jeremiah 23:24 it tells us that God's Spirit fills heaven and earth, and Hebrews 4:13 states, "Nothing in all creation can hide from Him. Everything is naked and exposed before His eyes."

Finally, Huckabee ends by saying that we do not need to implement a new law to stop school shootings, because there already is a law that works if we "teach it and observe it," and that law is "Thou shall not kill." Oh my, how very wrong Huckabee is, again.

It is important to note here that the law "Thou shall not kill" was given first and foremost to a people that God chose, that He entered into a covenant with, and set apart from all other people in the world. Yes, the Bible tells us that the law of God is written on every man's heart, which is why we have a conscious, however, the Israelites were the first to receive the actual commands from God, Himself, and receive the promise that would usher in Christ Jesus, who would then reconcile the world back to the Trinity. So, "Thou shall not kill" was given to God's people, not to the world, because God was consecrating them, and using them as an example of who He is and of His loving ways.

I promise, you can teach "Thou shall not kill" to every person in the world until you are blue in the face, and yet, murder will continue. Why? Because the law exists to reveal sin, but the law does not have the power to deliver you from sin.

I suggest you read all of chapters 7 and 8 in Romans to fully understand the difference between the law and the Spirit, but here is part of it, "So I find this law at work: Although I want to do good, evil is right there with me. For in my inner being I delight in God’s law;  but I see another law at work in me, waging war against the law of my mind and making me a prisoner of the law of sin at work within me. What a wretched man I am! Who will rescue me from this body that is subject to death? Thanks be to God, who delivers me through Jesus Christ our Lord!  For what the law was powerless to do because it was weakened by the flesh, God did by sending his own Son in the likeness of sinful flesh to be a sin offering. And so he condemned sin in the flesh,  in order that the righteous requirement of the law might be fully met in us, who do not live according to the flesh but according to the Spirit.

Mike Huckabee has not only shared his bad theology, but his words are likely to bring much confusion and guilt to believers and non-believers alike. What his words are suggesting is that we are being punished by God, and he suggests it is audacious of us to ask, "Where was God?" when we have treated God so badly, made Him unpopular, and turned Him out of our lives with our pride. Really? Has Huckabee not read Genesis lately? Huckabee is accusing us of doing exactly what Adam and Eve did to God, and every human has done since! It's called sin! And isn't sin the very reason the Trinity set everything in motion for Christ to be crucified, in order to win us back to Him?

And how does God win us back to Him? With the one thing Huckabee left out: Love.

God does not point a finger at us and say, "You are repulsive and should be ashamed of yourself. You better straighten-up or I am going to hit you with even more calamities to wrench your puffed-up, proud heart!" No, rather, God comes to us with Himself, with love --love that overwhelms us, love that says, "My precious child, you are broken and in need of mending. I want you to crawl up into my arms and let me saturate your being with my love, for only my love can heal you and change your self-destructive ways. You cannot change yourself,  or heal your brokenness, so out of my love, I gave my life for you, shed my blood, and only I am able to change and heal you. In fact, I desire nothing more."

Yes, it is the kindness of God that leads us to repentance (Romans 2:4), and we love Him because He first loved us (1 John 4:19). 

Huckabee has not brought God's healing to any of us with the statements he made in the above video. God's love is the answer, the only answer that has ever been, or ever will be, for a broken and devastated world. I pray that Huckabee will experience the saturating, overwhelming love of God for himself, that he may, in return, be a messenger of that love, and not one of guilt and condemnation.

Bad Theology: Retribution

The excerpts below are from chapter 6, Retribution and Other Bad Ideas --Biblical Theology in Marva Dawn's book Being Well When We're Ill  (2008).

    ...[S]ome people seem to have an inordinate need to blame somebody...Maybe it is because they feel more in control of the enigma of evil if they can accuse someone. This was brought home by the headline in the news today. A gunman killed 32 people yesterday at a Virginia Technical University and immediately people began blaming the administration... the brutality of the destruction terrifies us; we feel a need to blame someone.

    ...The bad theology people express to us is extremely harmful. It not only cuts us to the quick and damages our sense of ourselves...but it also sabotages our understanding of the nature of the Trinity. Often it arises from the speaker's own faulty conception of God --in many cases the idea that God the Father is a wrathful and stern Judge whom Jesus had to placate by His sacrifice of Himself on the cross.

    This is one reason that I so often emphasize that God is Trinity. All three Persons share the same gracious essence. All three Persons were willing to go to the extreme lengths that it took to reconcile us to God's Self, and all three participated in the act of redemption. All three Persons love us unconditionally and perfectly. The Triune God desires our salvation and does not operate on the basis of retribution.

   Retribution is such a bad theology that an entire book of the Bible [Job] is devoted to denouncing it. ...[Retribution] is the doctrine that God gives "tit for tat" --a specific punishment or reward when we do evil or good.

   ...The cosmos is not founded on retribution. Its cornerstone is the character of God, who is boundlessly wise, everlastingly gracious, and unceasingly mysterious. God does not blame us for our sufferings; instead He wants to dwell with us in them and show us Himself.

...Why do we and other people so often feel that we have to give explanations? Could we rather not learn in the face of calamity to grieve over it first and leave the mysteries in God's gracious care?

...God's perfect will is our well-being. But the Trinity is working with us in a broken world that contains evils caused by many other forces. It is not that God doesn't have the power to supersede the will of these forces, but that out of His perfect love He will not mess with our free will and the natural laws of creation. So tragedies happen because this is an evil world, presently under the reign of it's ruler, as Jesus acknowledges Satan to be and yet asserts that he has been driven out.

    Sometimes also, for our well-being, God does allow tribulations to enter our lives. Here we truly must apportion wide space for mystery, because we do not and cannot know what purposes God might accomplish through our sufferings, nor should we try to distinguish decisively (as some actually try!) between what troubles are sheer tragedies of evil and what are permitted in order that we might  be changed. We simply know that evil is evil and that we will no doubt be transformed if we rest in God in the face of it.

   To think that everything that happens is precisely God's will is to malign God's character and to ignore human free will and all the forces of evil at work in the world. We certainly can, however, believe that even in bad situations, evil times, and dangerous places God will be at work. God never abandons us, but He will always be there with us to give us help and abiding hope.

Not BAD, but GOOD

There is some really bad theology in the world of Christianity --theology that comes out of fear, and is based on good or bad deeds. This kind of crap distorts who God the Father is, and how He really views His creation... how He views you!

Brennan Manning and Wayne Jacobsen have been two extremely influential teachers in my life,
and their theology is GOOD because it teaches the transforming LOVE of the FATHER
for YOU!

I highly recommend getting a hold of their books! My favorites are "The Ragamuffin Gospel" by Brennan Manning, and "He Loves Me" by Wayne Jacobsen.

Below is Wayne Jacobsen sharing life-altering truth. You really don't want to miss this.

This is no typical teaching, I promise you!

celebrating, despite many hardships

Throwing a Hobbit Holiday Celebration on the 15th, the day after the massacre at an elementary school in Conneticut, and just 2 weeks since my dear friend, Gretchen, committed suicide, didn't seem right at first. What right did I have to be celebrating when so many were mourning? Wasn't my heart broken and horrified, just like everyone else in the world who learned that 20 young children were murdered, as well as the adults who tried to defend them?

I thought about canceling the party, but things were already in motion: my sister and nephew were on their way from Atlanta to celebrate with us --I had not seen them in over a year. Guests were making food, dressing up, and when I prayed, I was aware that Father had been helping me to prepare for this celebration with friends and family, and I was not about to turn away a gift from Him.

The party was not as big as we thought it would be since five couples with kids who were going to come, suddenly had to stay home because their kids got sick. There's a nasty bug going around, and I pray they all recover quickly.

The guests who were able to make it blessed us with their company, and we hope we were a blessing to them in return. There was conversation, food, costumes (hooray), children, games... and love.
Jeremy and I both agreed that we love our friends and family very much, and are so very, very thankful for them.

This year has been difficult --not that any year during our 18 years of marriage has been easy-- but this year was extra hard for many reasons, mainly my health, which altered me greatly. This year I have seen many doctors, tried more medications than I can count --one which had devastating effects on me-- I had 4 MRI's and 2 unsuccessful nerve blocks through my lower spine. I fell deeper and deeper into hopelessness and despair, a crisis of faith, and decided on a date to end it all if nothing improved. Then, a few days after my 39th birthday (ugh, not even going to go there) I had Myobloc (a medicine like Botox) injected right into the damn, bothersome area... 3 weeks later, things did improve! Oh, I still suffer with symptoms and probably always will, but a few steps out of the dark hole toward the light can mean the difference between keeping a date with your end, or not.

This has also been a year of church-lessness for us. Every sunday I continue to miss our defunct church, Tommy's Interactive. Our 5 years there were vital to our spiritual life. Even on some of my worst days of suffering, I would get up and take the 30 minute drive to Tommy's. Now, we live in Columbia, and I will not get up and make an effort go to church --any church-- within a 15 mile radius, because they cannot hold a candle to what Tommy's was. We tried one church for a couple of months, but after realizing there was little-to-no community, we stopped --and no one missed us, because no one even knew we had been there!

This year, on the day before Easter, we had to put to sleep my sweet Sarah-girl. My heart was wrenched, and I couldn't sleep in my bed for a month, because for 13 years she had slept with her head on a pillow beside mine.

Then, my friend Gretchen, with the same condition I have, just took her life.

With all this personal suffering and heartache (there are many more things that I have left out) I have to acknowledge that this year there have also been blessings, even in my darkest hours, that have come directly from God, our Father, reminding me, I am here. Heather, I am here in your suffering with you.

The blessings from God have come in the form of His presence during prayer, and in the form of my husband and son, the two dearest people in my life.

They have come from my Mom, whose love and support is always available, my sister, Ginny aka Seester, who is always a source of joy and laughter, my friends, their fellowship and prayers, a birthday dinner they threw for me, being invited to a weekly bible study, and a wonderful friend who gave me a book sent directly from God to speak words of truth to my heart.

The last days of October and going into November, Jeremy, Jonah, Jonah's best friend Chris, and I, went on 6 day vacation to Asheville, NC. God blessed that trip in so many ways, and I treasure those moments in my heart.

There are many more blessings from this year too: our new puppy Hannah, living this year in our new home --and NOT in a trailor in Pelion!-- friendships that have grown closer, being led to a wonderful, female Christian therapist, and the miracle of finding Dr. Redmond, a strong Christian doctor, who prayed with me before the Myobloc injections.

For weeks before the party, I kept praying that God would bless our friends at the party, that they would experience joy, feel loved and uplifted while celebrating His holy birth, wonderful friendships, as well as the incredible works of Tolkien, whose books reflect the Christian faith.

So, despite all the bad, the good that God has blessed us with is worth celebrating, for He has been faithful to us, He has loved us, lead us, and kept us through much grieving and suffering, and He continues to do so. For that, for HIM, I am grateful.

I continue to pray for all those who are experiencing the grief of losing their children --a pain I have not experienced, and fear with all my heart-- that in their hurt, anger and despair, Father will hold them, and grieve with them, and be. Just be. Let them know He is there.

when angels come down from heaven...

this is the song they sing, as they descend upon the light,

to gather the soul of a suicide.

ask me how i know...

Speculation Over Gretchen Molannen's Suicide

There has been a lot of speculation going on around the web since my friend, Gretchen Molannen, committed suicide on December 1st, immediately after she went public in the Tampa Bay Times with her story of Persistent Genital Arousal Disorder (PGAD).

Some have speculated that Gretchen was "planning all along" to kill herself right after the article was released. Others have wondered if she regretted going public or felt scandalized by the media.

I can tell you, in the past year that Gretchen and I became close friends, she attempted suicide three times. I know this because she wrote to me right before two of her attempts, and right after one that failed. I don't know if she attempted more than three times, but I think it is certainly possible. The last time she told me she tried to kill herself was October 15th, which is not very long ago.

As for the speculation about the media, I know that Gretchen approved the news article before it was printed. I also had to approve the blurb about me in the same article. To be honest, I think the article (as well as the on-line video) ended-up being told as sensitively as the 20/20 shows and news articles I have been in concerning my own PGAD.

Now, as to the question, did Gretchen feel exploited by the media? In her words to me, yes, "a bit". The interview process for this single news article went on for a much, much longer period of time than any article I have ever been interviewed for, and I know that Gretchen felt worn down by the seemingly never-ending interview. The stress made her PGAD even worse, and caused her to "abuse" herself more than usual.

I encouraged Gretchen to let the reporter know how hard the interview process had become, or to consider completely pulling out. Gretchen informed me that she had a discussion with the reporter, and the reporter apologized. Gretchen then decided to go on and complete the article, and do the video as well, in desperate hope that by doing so, someone would offer her medical care.

I have no idea what truly went on inside Gretchen's mind the day she committed suicide. What I do know, is that Gretchen was an incredibly strong-willed woman. Unlike my own PGAD, which medicine has made somewhat manageable --so that I can have days without any symptoms-- Gretchen had severe PGAD day-in and day-out, for 16 years! If I were her, I would not have lasted that long.

Gretchen was also so very strong-willed that she was determined to find medical help, going so far as to put an ad in Craig's List begging for a physician to help her! Sadly, not one doctor replied to her ad, but the reporter did, and the reporter did so out of hope to find Gretchen some help.

You know what? The article did find Gretchen help. Lots of help! Yes, indeed, after Gretchen put herself in the public eye, doctors suddenly jumped at the chance to say, "Oh, I will help the poor girl!"

That is the tragic, tragic truth.

If we are all going to speculate just who is to blame for Gretchen's death, the uncomfortable truth staring us in the face is not the media, who, although, took a very long time to get all the facts straight, I believe the reporter's motivation was pure: to find Gretchen help.

So who does that leave to blame? It leaves everyone.

Everyone is to blame who knew Gretchen needed financial help but didn't give her a cent, every useless doctor who Gretchen scrounged-up the money to see, only to get nothing but insults in return, the expensive specialists she called and e-mailed, but chose to ignore her cry for help, the judges who she came before twice, only to deny her disability, twice! The system is to blame for not renewing Gretchen's medicaid, every Christian who knew she needed prayer, but did not present her needs to God, every person who knew she was in a dire situation, myself included, we are to blame. We did not support her enough, we did not love her enough, and we certainly did not give her the help she was begging us for.

In the end, my fellow humans, there is no need to speculate: Gretchen's death is on all of our hands.

YOU!!!

it's almost 8am. since my dad took his life and the shotgun woke us on 11/10/07 at 2:30am, my sleeping schedule, which was already bad, got even worse. i used to stay up 'til at least 4 or 5am, but now i have trouble going to sleep unless the sun is up. can you really blame me? the sun is now up, it's been up, and the birds are chirping. when everything outside is alive and in the light, i feel safe to sleep.

when i lay down in the darkness the past comes back to me and unless i am good and drugged up, my mind will not go to sleep.

i think my dosage of paxil, which was upped a month ago, is making it difficult to feel sadness.
it is not a good feeling. i can feel anger, but sadness...not so much. i was glad when it came the other night and i was like, "oh hey, i can FEEL!" and i wept. i imagine in some ways it is good for me not to be feeling the full power of my sadness... only because i know that path, and it leads to much darkness and despair. i'm instead in a kind of twilight, but holy shit, not the movie. can i vomit now?

i am feeling angry tonight. am i mad at Gretchen? no.
God? well, i am usually ticked at him on some level at all times, but about Gretchen? hmmm, yes, somewhat. okay yes, i am angry at him, but not at the same time. i'll have to figure that out later.

to tell the truth, i am mad at the church (which is nothing new if you know me). i have just been wondering where the hell was The Body of Christ in Gretchen's situation??? could she have gone into a local church and told them about her situation, and would they have offered her help? i know what kind of help i got from churches: zero to really, really bad advice, you know like: you have a demon, or you have sinned somehow and not confessed your sin so you have "opened a door to Satan" to inflict you and you obviously don't have enough faith to be healed or are still living in said unrepented-door-opening sin and God can't help you so abstain from food for a week and see if God lets you in on what sin you haven't repented of cause he isn't in control of your suffering --he just lets the demons use your body for a torture playground until you figure out WHAT YOU ARE DOING WRONG.

i am not joking. the above was told to me more times than i can fucking count.

so here's the question keeping me UP this morning:

why is the Body of Christ still so seemingly ineffective when it comes to helping the poor and the sick? isn't that what Christ called us to do?

i had a fundraiser for Gretchen, when she was ALIVE and suffering, in order to help gather funds so she could see a doctor. i asked my friends, both christian and not, to please give.

we had a donation website, and i also informed everyone that whatever i sold in my Etsy store, 100% profit was going to Gretchen. a few believers gave. a handful of really wonderful believers gave. then money came in from my dear atheist and agnostic friends. then strangers gave. then, when i thought we had received all we would ever get, my very slow --as in no sales for 6 months-- Etsy store began selling items 2-3 times a week! i could hardly believe it, and i knew God was doing it... and i have honestly wondered this very difficult and disturbing question: was he doing it because his children were not?

i currently have a fundraiser for Gretchen, to cover the costs of having her cremated (which costs over $1,000) to have a memorial service for her, and have her shipped to her family's plot in Wisconsin so she can be buried with her parents.

and you know what? in 4 days time the donations amount to 5 times MORE than the month-long fundraiser for Gretchen when she was alive! does something smell wrong here?

it does to me. and i want to spit or slap or share my middle finger (lovingly, of course) with...
you, and you, and you and you and you and you and... YOU!

for all the suffering suffering suffering

i accessed the place... the place some part of me was blocking, without my permission.
i know why now. the small pain grew and consumed and twisted my insides.
the lament, the groan of grief came up from my gut... for Gretchen,
for my dad, for all the suffering suffering suffering...
for the fear, the damnable fear: will this also be my fate?

i do not deny i am afraid. i do not trust God as i would like.
he did not rescue my dad. not Gretchen. so what choice did they have?

what choice did they have?

pain. suffering. hopelessness. a gun? some gas?

the bodies. the thought of their cold bodies.

the night when we saw my father's white jacket glowing in the distant grass of the darkened field.

the following day when they had all of him covered in a white sheet,
all of him but his cold, hardened hand.
it wasn't my father's hand. it was a stranger's.
my father's hands were large and open and warm. this knotty, clenched hand...
how could it be his?

who will find my body someday? if only i could disappear when the time comes,
which will not be any time soon, mind you... but i hate that a shell must be left behind.
if only we could dissipate into the air like our breath on a cold winter night.

i imagine Gretchen... when they found her. no longer dwelling in her tormented body.
her body. her remains, as they call it.

i know her despair. i know her despair, and i do not blame her.
why wait for doctors who will run tests and do procedures with no assurance that one thing they do will help her in the least? she knew how many doctors and medicines and tests and procedures i have had done...so many, many let downs. and i am still not whole! i am "managing", but each day is a task. i am a prisoner to this disabled body... and she is free. if anything, i somehow envy her.

but far more than envy, i mourn her 16 years of torment and her tragic end, and i ask God why he didn't come through for her?

the tormented can often grow bitter toward those who are whole in their bodies, those who are painless and complain and scream about the most trivial matters: a scratch on their car, an insult, always offended and always proud and judging others, criticizing others, having a damn absurd opinion about everything... and never ever ever suffering but for the occasional headache. they are about as shallow as a toilet. and they are everywhere, bombarding the sick and disabled with their perfect lives and bodies, their abilities to do things...like walk... taken for granted. and we who are suffering often envy them.. often despise them... especially when they invalidate our suffering..
tell us to "just pray" or give us scripture verses to "claim" as "God's promises".

i mourn this as well. the lost, shallow souls. the hurt they inflict.

i pray for help to love and forgive...

i pray for help...

i pray

and pray

and grieve before my God.

Gretchen, my dear friend, is gone.

I knew something wasn't right when forty-eight hours had passed and there was still no reply from Gretchen to the last e-mail I sent her.

In my last e-mail, written on Saturday, I told her how proud I was of her and how pretty I thought she looked in the just-published Tampa Bay Times online article and video, which she so bravely agreed to be in to share her story of suffering with Persistent Genital Arousal Disorder (PGAD) for the past sixteen years. It was right after I watched the video I wrote her, "I can't tell you how moving it was for me to be able to see and hear you! I felt like we were in the same room, and I just wanted to hug you so badly and cry with you."

That was Saturday, and by Monday night I was worried and praying, "Lord, please be with Gretchen. This isn't like her to not write me back after two days." My gut twisted up as I wondered if she had been Baker-Acted again. Can the Florida police arrest her for admitting in the interview to three recent suicide attempts? "Oh Lord," I moaned, "If the police took her, please please give her your peace in her heart, her mind and especially her body."

Tuesday, when I checked my e-mail, I hoped to see "from Gretchen" in my inbox. There wasn't an e-mail from her, but there was an e-mail with the subject line "Gretchen" from the leader of the PGAD Support Group. My breath caught in my throat when I opened the e-mail and it began, "It is with a heavy heart..." with a link to a new article in the Tampa Bay Times.

Gretchen was gone.

Her last attempt at suicide was completed. She didn't write me an e-mail beforehand to say goodbye like she had done several times over the past year, and I was unable to write her back or call her, to tell her not to do it, to tell her that she is my dear friend and I love her, that God loves her, to just hang in there because God is going to make a way for her suffering to be reduced. I couldn't tell her again how Jeremy and I are willing to help in any way we can, to remind her that we would pay for her to come up to our home so she could see my doctor who specializes in pudendal nerve damage.

No. All such chances were gone, because Gretchen was gone.

After crying to Jeremy and then my Mom, I called a woman who Gretchen said was like an aunt to her, and lives just down the street from Gretchen's house. Gretchen had given me her "aunt's" phone number months ago in one of her goodbye e-mails to me, asking that I contact her to tell her Gretchen was dead. After reading that e-mail I didn't call Gretchen's aunt, I called Gretchen. Her phone rang and rang, but she did not pick up her phone. I left a message, hung up and then called her aunt, asking if she'd please go check on Gretchen to see if she was okay. Gretchen was okay that time. The sleeping aid she took made her fall into a deep sleep before she could go through with anything.

This call to Gretchen's aunt was different, and too late. Her aunt told me that this time she found Gretchen dead inside her home, and she had been dead for two days. Two entire days passed before anyone missed Gretchen. My heart shattered. No wonder Gretchen always told me how alone she felt, how she had little friends or family to love and support her.

Gretchen's aunt then explained that Gretchen died with no money, not even a cent to put towards her being cremated, to have a memorial, or to ship her remains to Wisconsin to be buried next to her parents on their family plot. She said she was hoping the county would be able to pay for Gretchen's cremation, because she herself has no money to help.

I knew then what I wanted to do. After I hung up the phone, I got online again and created a fundraiser, titled "Memorial Fundraiser for Gretchen". Thinking along the same lines, the leader of the PGAD Support Group had her daughter create an event on Facebook event for Gretchen, and used the link to the fundraiser.

I am hoping this will honor Gretchen. I miss her terribly and keep finding myself looking for an e-mail from her in my inbox. My only comfort is knowing she is no longer being tormented by the PGAD "beast" as she called it, and that she no longer feels alone, having reunited with her parents, and lovingly held in the arms of God.

If you would like to donate, please go here: Memorial for Gretchen

a gift from my father, years after

i was going to take this blog a different direction, but i realize i am too fragile at the moment. i am suffering quite badly in my body, in my mind and heart, and i'm just not up to the task. so i'm taking a different route.

i am hoping this fragile "set back" i am experiencing is due to a few different contributing factors, with the main one being the 5 year anniversary since my dad took his life in our front yard, and other reasons like stress and attacks from pharisees.

hmm, i think i better pause here and take a moment to ask anyone reading this to please not give me any advice on what i write here. not that many of you do, but sometimes there will be one or two people who, instead of sympathizing (entering into another person's suffering) they give "advice" or try to suggest a "different perspective" and it's really just awful and hurtful. and like i have said before, it is actually a form of emotional abuse --i kid you not-- and it even has a name: invalidation. i do appreciate comments and thoughts, but unsolicited advice/preaching/correction is not alright and i'll call your arse out on that shiznit! ok then. you few have been warned. back to my story.

throughout my life, i often turned to my dad when i needed encouragement and support (i was actually asking him for advice, so what he told me during those times was not invalidation). my dad was always supportive of his children, in whatever road they took in life, he was there when you needed him --and sometimes he was there when you didn't want him-- but i believe all 6 of his children, myself included, would say our dad was always just a phone call away to give good, solid advice, encouragement and he always offered to help in any way he could, and it was really a great comfort to know that.

my dad was a great example to his children to be creative, to "think outside the box" as he often said, to be an entrepreneur, to approach life in non-traditional ways, and to take chances. he questioned "why?" a lot. why do people have certain mindsets? why does our culture do the things they do, believe the things they do, or practice certain traditions? he was so intelligent, so incredibly wise, and was not afraid of confrontation in-the-least! he was able to tell someone how incredibly offensive and stupid they were in such a way that it left them utterly speechless, or in one case, speechless and crying. (that one was not very nice, and in retrospect, i think he'd now appreciate that woman's point of view).

when my dad decided to devote his life to the Lord he was as zealous as Paul after falling off his horse. he even confronted an entire church board meeting when he saw how the money they were receiving from the congregation was actually being spent. he pronounced anyone who agreed with the way the money was being lavished on the head pastor as hypocrites. they too were speechless, but ended up justifying themselves. surprising? not really.

all of dad's children inherited this confrontational gift in one form or another, and each with their own varying beliefs and opinions. i think it is a trait on my dad's side of the family, actually. my dad's parents were reporters, my dad was a photo-journalist and editor for many years, and that whole reporter-type questioning and boldness is in the blood of every McCuen, and it manifests in really different and wonderful (for the most part) ways. you can imagine how this trait could have it's downfalls too, and downfalls there have been. but that's a subject better left for my memoir, if God so pleases me to write.

about a year before my dad died, Jeremy, Jonah and i visited my parents at their home, and we were having lots of great food and conversation as we often did. i remember my dad stopped for a moment in the conversation and said to me, "Oh, Heather, before I forget: your Mom and I recently watched a movie on the Sundance station, and it's called 'The Girl in the Cafe'. As we were watching, I turned to your mother and said, 'You know who that girl (the main character) is like?' And I said, 'Heather. Heather is like that. So make sure you watch it. 'The Girl in the Cafe'. Alright?"

i didn't get around to seeing it. every time i looked for the movie in our local video store, i would forget the title. by the time we got a Netflix account, my dad was gone, and when i asked, mom couldn't remember the name of the movie either. all i knew was that it had to do with a girl in a place. a shop? a restaurant? then a little more than a year ago, it came to me! i searched Netflix, and there it was! "The Girl in the Cafe"! i put it at the top of my queue and couldn't wait for it to arrive.

upon watching the beginning of the movie, i was really confused. i thought, 'okay, so my dad thinks i am like a lonely girl who shacks up with a really old man? what the heck?' then i saw this scene and got it:






the character, Gina, is a guest at this conference of the world's most powerful people who make decisions that effect us all. she's not afraid of breaking tradition, of speaking up (she does this a few times to a couple of men before this scene, but this is her most powerful one, in front of all of them) and she challenges them to do what is right for the sake of starving children.

it is not so much the subject matter here that my dad was comparing me to (although if given the chance to speak up for children who are starving in the world because of stupid bureaucrats, i totally would!) but my dad was comparing me to Gina's boldness in speaking out, in questioning 'why' and 'why not', and for her taking a risk despite the knowledge of the consequences that would follow.

i cried very hard at the end of the movie as it came at a time when i was questioning (with love and guidance from God) the decisions people were making for our body of believers, and i had received some strong and hurtful opposition.

since that time --and every time now-- when i open up my heart and speak out on a topic (like animal abuse, for example) or question something (like the way church functions) and in return i am opposed or attacked (see the blog i wrote before this one) i go back to this --to this gift my dad gave me even after he was gone...but of course, not truly gone. each time some pharisee or hard-headed-opinionated person doesn't like what i question or a truth that i share, i remember this, and i feel my dad's encouragement, and i am truly strengthened.

i do not want to come across as puffing myself up with pride. not at all. i have learned, and continue to learn when i should hold my tongue and let God be God of other people's lives. who am i, anyway, to judge anyone? but i will speak up when led by the Spirit, and i will continue to "question everything" to get to the truth of the matter, despite how painful that can be for me, and i will not settle with "it's just the way things are" mentality. not ever. and it's not just me! my family has this same gift, and the people i love to be around --my friends-- are this way too (some much much better at it than me!)

so thank you, Dad. your love, wisdom and support continues to be with me, as does the Spirit, whose presence you see clearly, whose love and truth you now know fully, as i will too, someday.

to ALL you MEAN CHRISTIANS, i am blessed!

this morning i have been the recipient of very unkind words. one from a stranger, and the other from an old, high school acquaintance --on my own FB page-- who in one breath called himself a Christian, and then called me a lying whore. i believe he was drunk, as he also posted horrible accusations and political comments beneath my post about the anniversary of my dad's suicide, which is tomorrow. i unfriended and blocked him after giving him many opportunities to stop his onslaught of ugly posts.

this is not the first time i have been judged and "corrected" by other Christians --or even by Christians in my own family! i will not say it does not hurt, because it does, but tonight while talking with Christ, he reminded me that i should rejoice and consider myself blessed, so with his help, i will do so, and pray he also gives me his heart to forgive and pray for those who have offended me.

In Matthew 5: 11-12, Jesus said, “Blessed are you when people insult you, persecute you and falsely say all kinds of evil against you because of me. Rejoice and be glad, because great is your reward in heaven, for in the same way they persecuted the prophets who were before you."

i do not want to deny that i am also guilty of hurting fellow Christians with my words, and i regret ever doing so, and pray they will (or have) been able to forgive me. recently, in a bible study i am blessed to be a part of, a friend read something from a book she is studying that read something along these lines: even if you are telling the truth, or correcting someone with the truth, if it is not done in love, then it is a sin. wow. that hit home.

it is hard for me to keep quiet though when i see fellow Christians acting like unloving, law-driven pharisees. i need to pray about how to react to these kinds of people. in scripture, these are the same people Jesus got REALLY ANGRY with, like rope-whipping, yelling-in-their-face angry!

i find it so easy and natural to have grace and love unbelievers, but someone being a hard-hearted, self-righteous,  defensive, bible-verse-spouting pharisee just makes me want to grab a whip myself and do some yelling-in-the-face, "you idiot! you say you worship Christ --the God of Love-- and yet you are being the complete opposite! you are doing great harm! you are giving our faith a terrible name! stop it!"

it is funny though, or interesting, i should say --in a shockingly disgusting sort of way-- that the majority of opposition i have received in my walk with God has come from other Christians. maybe this is because i am an easy target as i open up my heart and life, reveal my struggles, questions, convictions and thoughts as i truly try to seek God, especially in these 18 years of chronic physical suffering, as well as deep emotional suffering.

now, i will be the first to admit that i am SCREWED-UP and in great need of God's grace and love and, well, everything! i know the self-destructive, selfish sinner  that i am apart from him, and i am tremendously grateful for all he has done and IS doing in my life and in my family! 

so, i'd like you to see below just one way i opened myself up, tried to encourage a brother, only to be the recipient of mean words from a fellow Christian. the morning after the election i wrote on a friend's page:

 ^"i didn't vote. in fact, i've never voted, and my reasons are religious as well as personal. that being said, may i encourage you that our God is in control. His Word reminds us that anyone placed in government/worldly leadership is put there by His will. we don't know why, but our trust is in Him, our all-powerful and loving Father, not any human leader. i have been very encouraged by the following article a friend shared with me. i have read it many times over in the past few weeks. i hope you will be encouraged by it too: http://jenhatmaker.com/blog/2012/10/16/the-election-thoughts-from-a-christian-independent."

then a complete stranger posted in response, "Heather for you to forgo your right to vote for any reason makes me very sad!!! I am a veteran, but I am a Christian as well....nowhere in the teachings of my Church nor in my bible, I read the NIV...have I heard or read anything that would keep me from voting! I have always been a believer of God and Country...and to vote ensures that both are alive and well! The blood of men and women that you will never know was shed to insure you that right!! You have no right to feel encouraged or discouraged as you gave up that right by not voting..... In actuality you are more of a part of the problem then any encouragement you could ever offer as a consolation!! Just my humble opinion....."

his post was "liked" by 4 other strangers.

i responded, "[name withheld] you are judging me and accusing me of being part of the problem, and you say that is your "humble opinion"??? you do not know me in the slightest, brother, and i ask you not to judge my personal, God-led conviction. i completely respect Christians who feel led to vote, and with the love of Christ, i would appreciate the same. i forgive you for being so judgmental and harsh. i will obey what God tells me personally to do, no matter who i may disappoint or receive undue judgment from, even those who claim to follow the same Jesus. i hope in future situations, you are able to do the same...but with love and true humility.

P.S. [name withheld] and those who "liked" his judgmental post: i apologize that my conviction offends you. that was not my intent at all. i was only trying to encourage my friend and brother-in-Christ. God bless."

now, i do want to point out here, how thankful i am to those of you who truly know me, love me, and pray for me! i pray God will bless you. i am so grateful to have true brothers and sisters in Christ. God has been answering your prayers, and the last medical procedure i had is finally giving me a good deal of relief! my doctor, who preformed the procedure, is an incredible Christian, and he even prayed with me beforehand! it took about 3-4 weeks to kick in, but it is working so well that i was just able to go on vacation with my family to the mountains, and our time there was SO BLESSED by God! i have not been able to travel (or do much of anything) in over a year, so i am grateful to you, your prayers and encouragement, and to God for His grace and loving kindness!

I AM BLESSED!

dying means everything

i have realized, at long last, what i have always known but never took time to practice: all the things i have imagined as "the stuff of life", mean nothing. my face, your face, they mean nothing. my size, age, home, financial status, nothing. my personality, my tastes, as well as yours, again, nothing. my art, your art, they mean nothing. accomplishments, nothing. good deeds, nothing. although these things may be good, like my art or your art --as it may help express our emotions and even touch other people's lives-- but the fact is: our art, our work, our tastes, personalities, home, size, face are temporal. in fact, all these things we take such great stock in are so very temporal, that unto the eternal, they are considered as chaff in the wind.

good lord, how frightening this realization is at first, for all of spend years --our lifetimes-- believing otherwise. i realize the mentality of many artists --myself included-- often count ourselves as something special that the world has not yet discovered, or maybe the world is beginning to discover --or worse-- if the world has snatched us from the crowd and put us on a grand display, then we feel we must strive to maintain our work, we set the bar higher and higher, to prove that we are, indeed, the unique one among the rest, worthy of attention and praise and love. i have yet to meet a secure artist. we have moments when we feel powerful, yet in truth, we are constantly powerless and frightened, just like the rest of humanity.

Matthew 16:25 Jesus says, "Those who want to save their lives will lose them. But those who lose their lives for me will find them."

or more interestingly said in The Message Bible: Then Jesus went to work on his disciples. “Anyone who intends to come with me has to let me lead. You’re not in the driver’s seat; I am. Don’t run from suffering; embrace it. Follow me and I’ll show you how. Self-help is no help at all. Self-sacrifice is the way, my way, to finding yourself, your true self. What kind of deal is it to get everything you want but lose yourself? What could you ever trade your soul for?

one month ago, my counselor shared two important things with me, one, do not resist your suffering, accept that you have it. this does not mean you have to be happy about your suffering, but acknowledge you have this disorder. too much energy is wasted resisting it, and it causes depression. two, invite God into every part of your suffering. e-v-e-r-y part.

since then, God has been revealing many things to me by his spirit and word...like what i wrote above. old, ancient teachings about dying to self, and i am now just scratching the surface. indeed, he knows the pace at which to teach each of his children about his mysteries. some catch on quickly, some slowly, some not at all.

so i am currently mimicking Mary, who "treasured up all these things and pondered them in her heart," as i explore with Christ what it really means to deny myself, take up my cross daily and follow Him.

bad shape

at this writing, tomorrow (wednesday) will be 2 weeks since my Botox nerve block, and as of right now, it seems as though it was a complete waste of time and money. my PGAD is as bad as ever.

i had to "take care" of my "problem" for over 2 hours on Saturday night, but even after more "O's" than i can count, IT never felt sated, and despite all the damn meds i am on, i sit here presently in horrible discomfort. even this laptop i am typing on, which is sitting on top of a pillow on my lap is nearly unbearable.

i am at a loss.

the Botox plus the anesthetic cost over $1,000. that's a thousand plus dollars for nothing...again.
and no, we do not have medical insurance, and are still making payments on my last two nerve blocks.

on the subject of suffering, there are two Christian books i am currently reading. one, which i mentioned in my last couple of entries is called Being Well When We're Ill: Wholeness and Hope in Spite of Infirmity by Marva Dawn, and the other book is Be Still, My Soul (25 Classic and Contemporary Readings on the Problem of Pain): Embracing God's Purpose and Provision in Suffering edited by Nancy Gutherie and includes writings by famous Christian writers from Philip Yancey and Joni Eareckson Tada, to Corrie ten Boom and Dietrich Bonhoeffer. both books are good, but what troubles me about them is that despite all of these authors insights and understandings of a child of God's suffering, is that the suffering they are referring to is physical pain.

i know what physical pain is. for years i had migraines so severe and interfered with my life so badly that i had to drop out of high school. (i got my G.E.D. right away which was far easier than enduring the agony of high school.)

the difference between suffering with physical pain and PGAD is that with PGAD, the sufferer is eventually forced to try and relieve themselves in a hateful, self-degrading fashion, which may or may not provide relief. if relief is granted, then five or so days might go by without any discomfort and life can be enjoyed happily. however, if relief is not provided, that means the sensations will actually become worse, and at a faster rate than before the sufferer was forced to molest themselves.

over the years i have been asked at different times by different people, 'Why don't you just not do it?' and in response i try to explain that asking such a question is like suggesting to someone who has an overly full, painful bladder to just not urinate. it's ridiculous. i simply cannot express in words how terrible the sensations can become and the sense of urgency that goes with them, but i can assure you, it is unbearable.

physical pain, on the other hand, can sometimes be helped with pain medication. in the case of the migraines i had suffered, hydrocodone would take the pain away 100%, and even without pain medication the migraine would eventually go away on it's own! this is not so with PGAD. pain meds only help a little and sometimes they don't help at all, and, in my case, the arousal sensations never ever go away on their own. they only increase day-by-day until i must perform the dreaded deed and sweat and exhaust myself and plead with God for hours to please, PLEASE let this orgasm be the last one that will bring relief ...and then have to have 10 more in a row, only to wake the next morning to find the sensations have not been relieved and feel them rapidly intensify during the long hours of the day. it is maddening!!! it causes me great anxiety and depression. it is pure and utter torture. torture i have had to endure for 18 years!!!

there is a woman who is a member of the on-line PGAD Support Group who has had PGAD her entire life, and she is now in her 70's! i can tell you now, i won't make it to my 70's with this. i have told God as much. i doubt i'll make it into my 50's like this either. i'm far too weak and growing tired of fighting, of praying, of hoping, of trying new medications and procedures... i am nearly spent, and don't know what more God requires of me. i'd love to "rest" or "trust in God" like people and books encourage me to do, but unless these people or writers have had PGAD for 18 years, i find their words empty, and even insulting. i have tried and pleaded with him to help me rest and trust, dammit, believe me!

the other day i asked God if it were possible, could he let me swap this disorder for the migraines i used to have. i told him i'm pretty sure he doesn't make bargains like that, but if he did, i could endure it until i died in my old age. otherwise, he had better hurry up and help me.

on the bright side...

i know, i know, you hear it often from other believers, "It's amazing, but God always seems to meet me right where I'm at", whether it be a teaching, a devotional, or in my case, the current book i am reading, "How to be Well when You're Ill" by Marva Dawn.

whatever issue i seem to be struggling with, 9 times out of 10 the chapter i open and read is concerning that issue. i can't believe this is coincidence.

today my issue was about feeling useless...feeling useless because of how my infirmities make every day things difficult or impossible to do. there are several things which are hard for me to do, one is to make plans, such as to have coffee or dinner with friends. so today's chapter was on this subject, and very encouraging.

i don't take things for granted as much anymore. for instance, i was very blessed (though also very scared) when my wonderful friend Emily wanted me to throw a birthday dinner party for me last friday. although the week had been hellish, God had grace upon me, and i felt well enough to have dinner with my friends, and it was a huge blessing to me. i was also able to have dinner a couple of nights later with my husband and son, and such moments are so precious to me. oh yeah, i'm 39 now  by-the-way. i'm not sure how that happened, but it did.

there are a few other things i in my life that i like to do that are also difficult. like standing or walking for long periods of time, and by long, i mean about 20 minutes. my back simply cannot support my frame well enough, and pain and fatigue sets in. i also really enjoy creating art, and like most women, i feel better when my house is relatively clean and organized. my back limits these activities as well. so i've had to learn not put pressure on myself, and do things when i am able. Jeremy and Jonah help a lot with the house, thankfully, and i create art (collages, necklaces, etc.) when i am up to it, which is a nice outlet and distraction for me.

i have been blessed that a woman found a cross collage i made and have for sale in my Etsy store, and has commissioned me to make 6 of them! it's taking me some time to make them, but they should be done by sunday. i am quite aware that this is a blessing from God. He is using me to bless others with my creations, and that means so much to me.

my prayer is that i will become well enough to do more for Him, but even if i do not, that i will find my contentment in Him, like the poet Milton did, when he went blind, followed by the death of his wife and not long after, his beloved son. considering his blindness, grief and inability to serve God with "day-labour" as he longed to, he wrote this poem:

Sonnet XIX: When I Consider How my Light is Spent

When I consider how my light is spent
Ere half my days in this dark world and wide,
And that one talent which is death to hide
Lodg'd with me useless, though my soul more bent
To serve therewith my Maker, and present
My true account, lest he returning chide,
"Doth God exact day-labour, light denied?"
I fondly ask. But Patience, to prevent
That murmur, soon replies: "God doth not need
Either man's work or his own gifts: who best
Bear his mild yoke, they serve him best. His state
Is kingly; thousands at his bidding speed
And post o'er land and ocean without rest:
They also serve who only stand and wait.


indeed, "They also serve who only stand and wait" are comforting words to me.

botox and lamenting

i'm simply here to write about today's procedure, and to pour out my emotions, mainly my fears and anxiety. please, i would appreciate if no one tries to comfort me or "correct" my feelings... in case you didn't know, doing so is called invalidation, and it is very hurtful, and very common. it happens when you do not enter into another person's pain with them, and try to change the way they are thinking and feeling. even though your intentions may be to "help", you are actually further burdening the person in pain. you can get a quick lesson here: INVALIDATION  it's a good read. no really. go read it. everyone needs a good lesson on the subject or a reminder of how harmful it is, even me.

so i had a nerve block today using Botox... right at the site of the problem, or should i say "directly into" the problem area. it hurt less than i feared it would, as the doctor did a local anesthetic so i never even felt the Botox injection, but what did disturb me is that even though i was thoroughly numbed "down there" i could still feel the PGAD. i guess the sensations are much deeper in the tissue than i realized.

unfortunately, the female clitoris has about five-thousand freakin' nerves... 5,000!!! so it is very possible that the Botox is NOT going to effect all of them.

my doctor informed me that 1) the Botox will not take full effect for two weeks 2) i will probably be in a lot of pain tomorrow and it will take a couple of days until i am better, and 3) he hopes that the Botox will not impede my ability to climax when i am forced to "relieve" myself.

Botox stays in your system for 3 months. so i could be looking at 3 months of torment or relief. in 14 days we'll know.

so with all this weighing in the balance, as you might imagine, i am freaking out a bit.

normally when i get scared/ have anxiety, i become immobilized, and then the dark weight of depression descends as i start to think about how i may never be free from this condition. i pray and pour out all my fears in God's presence, and tell Him how i cannot comprehend why He has allowed such suffering into my life --suffering that is beyond my control, that is no longer manageable with medications, suffering that is so overwhelming physically, mentally and emotionally and takes me to the very edge of my sanity. i tell Him that i love Him but am also angry with Him. this is not the life i wanted... i never wanted to "share in the sufferings of Christ" like this... not for the past 18 fucking years, and who knows how much longer???

it's not as though i haven't been proactive, dammit. i have seen 4 different doctors these past 12 months: my family practitioner, a urogynecologist, a pain management doctor, and my current doctor who specializes in many areas. i have had 5 MRI's, 2 painful and unsuccessful spinal nerve blocks. i drastically changed my diet, quit smoking, and tried a slew of medications. i seek God continually and pray constantly. i read His word as well as helpful, teaching Christian books everyday, and i just started seeing a female christian counselor... still there's been no change in my PGAD. i even suffer when i'm asleep as my dreams are awful and disturbing.

i tell God that He knows, only He knows how truly weak i am. He knows my thoughts and He knows that i crumble when i am in torment. He knows that i am often frightened beyond comprehension.

sometimes i wish i were really sick, like i had something terminal and painful, not suffering with unwanted, chronic arousal that does not serve any purpose. sometimes i think i would prefer pain over this embarrassing disorder.

of course, my true desire is to LIVE, but to live without PGAD! despite my suffering, i honestly have an incredible life: i have a loving, wonderful husband, a beautiful, sweetheart of a son, two adorable dogs, great friends, and we actually own a house that is my dream home! all these wonderful gifts are all around me, and i only get to truly enjoy them a few days out of a month, if that.

i'm not giving up. not any time soon. i plan to press on...to keep trying to place my trust in God, or rather, as i have been praying, "Lord, build trust in me for you, because i do not possess it within myself,"and even as i pray that, anxiety rises up in my throat, and i have to swallow hard. take a deep breath.

my son turns 17

today my son Jonah turned 17. i don't really know how it is possible that he is 17, when i can so clearly remember the day he was born, and the beautiful baby he was, then a blond, curly-haired toddler, then an adorable, laughing little boy, then a big boy, pre-teen, teenager...and now...17???

yes indeed, Jonah, my little big-boy is 17, and he is simply amazing --and not because of anything Jeremy or i did. Jonah was born with a huge, gentle and compassionate heart that God fashioned within him. although Jonah has certainly gone through some very rough times because of the mess that Jeremy and i were for so long, Jonah has also seen how real and loving God is and how He has changed us with His love, and Jonah loves God as well, which, of course, makes me extremely grateful.

my heart is overwhelmed with love for my son, and i am so proud of how grown-up he is. for almost a year now, Jonah has worked two days a week with his father in sales, and when i finally saw Jonah at work, he was so professional and mature i could hardly believe that was my "baby" interacting with strangers and running a cash register!

 

Jonah is very into cars, cars that ride low. a few years ago Jeremy and Jonah did incredible body work on his truck (which was my father's) and gave it a new grill and bumper, new wheels and rims, a new paint job, and of course they lowered it! it looks so cool. then, just recently, Jeremy got Jonah another car to be a fixer-upper. i couldn't tell you anything about it...except that i am so grateful that my husband supports his son's interests and dreams and that they get to do cool projects like that together. Jeremy is a great father who adores his son, and they are my two favorite people in the entire world.

Jonah is also a skater. he loves skating as much as he loves cars, if not more. nearly everyday he and his best friend Chris go out skating. i will hear, "hey Mom, we're gonna go skate, okay?" i call back, "Okay! be safe! i love you!" "K!" he replies, "love you too!" then i hear his truck start up and drive away, and i take a deeeeep breath and pray, "Lord, please keep him safe. Keep Jonah and Chris safe in every way today."

as a mother, i of course want all the best for my son, and i especially never want him to be hurt emotionally, physically or spiritually...but i also realize all those things are not in my control, but in God's hands. i also know that my hopes may be unrealistic, as pain comes when living in this world...but some people suffer far less than others, and if it's possible that Jonah can suffer less in his life than what his father and i have (and continue to suffer with) please, Lord, let it be so!

my heart's true prayer for Jonah is that no matter what, he will always have a relationship with God, even when things go wrong, when things hurt --and when and if something awful comes to pass and all he can do is curse God and be angry at Him, that he will remember, in the end, how much his parents and The Trinity love him. i believe that is Jeremy's and my deepest longing for our son, and i believe it is God's deepest longing for him as well... and i believe it will be so for Jonah, who was born with, and lives with, the precious, caring heart that God gave him. i am beyond blessed to call myself Jonah's mother. i have known no greater joy than witnessing him grow from a baby into a young man. so i thank you, Heavenly Father, for Jonah, our beloved "Dove of Peace".

huge, small miracles

for nearly 3 weeks now, i have not had more than a 24 hour break from my PGAD. today and tonight i have been battling against thoughts of hopelessness and despair, and i have been praying. a lot.

i know that it is God who gets me through. no doubt. and He has done some major things in my life over the past few months.

for one, i quit smoking, something i never imagined doing, but i experienced a horrendous sinus headache (no infection according to the doctor) that was so bad that the thought of smoking another cigarette ever again made me sick, so i just stopped. it was far easier than i thought it would be, so i know it was through His strength in me that i was able to quit. (on a side note here: My headache was so severe my sweet son had to drive me to the doctors. he's just an amazing young man that i adore and love with all my heart.)

i also stopped drinking Coca-cola, which i was just as addicted to as smoking. i quit diet soda too. now i have about one or two cups of chai tea a day with stevia and almond milk.

almond milk? yes, because i also quit dairy.

i eat fruits and vegetables on a daily basis now too, instead of all that refined crap i was eating.

then, about a week ago, i quit wheat and gluten.

i also starting seeing a female christian counselor that i really, really like. she is the one who suggested i may want to stop eating gluten because studies have been found that gluten effects the peripheral nerves (nerves outside of the spinal cord). i researched it, and she's right.

i'd like to say i am feeling a huge difference in my health, but the only thing i have noticed is that since i quit smoking, my sinus headaches have reduced by about 85%. crazy. i am so thankful.

so no smoking, no soda, eating healthy, no dairy, no gluten and seeing a counselor are all huge, small miracles that God has lead me to do, as well as giving me the strength to make the changes with ease.

exercise is the next step, which i am praying He will help me to do.

still, i linger beneath this dark shadow of unpredictable, and chronic PGAD.

i will soon be seeing Dr Redmond so he can test my O.I. muscle (in my pelvis) to see if it has unrelenting tightness. if it does, we are going to try botox injections, which i pray will work.
the heaviness of this burden is so difficult to bear, and i am praying He will use Dr Redmond to bring me some relief.

i am currently reading a book that a friend of mine gave me, and i think it is the best book on suffering and our relationship with God that i have ever come across. mind you, i have moments when i struggle with what the author is saying, although i know it to be true, and as i press on through the book, it has proven very encouraging.

the book is Being Well When We're Ill: Wholeness and Hope in Spite of Infirmity by Marva Dawn, a christian teacher and author who is completely blind in one eye, with partial vision in the other, and she only has use of one leg. she wrote this book from her own struggles, and truly knows what it is like to be a child of God who suffers and the mental/emotional/spiritual battles we face. i highly recommend it for those who suffer, but also for those who have a suffering family member or friend, in order to better comprehend what chronic suffering is like for an afflicted child of God.

breaking news

this very important, informative news segment was recently released about Persistent Genital Arousal Disorder and some of the new medical procedures that are being used to treat this horrible condition. the most effective procedures, however, only seem to be performed overseas.


i hope and pray that medical doctors in the United States will soon make these procedures available!


more info and the transcript of this video can be found at the Catalyst television website:

http://www.abc.net.au/catalyst/stories/3474801.htm