Monday, February 27, 2012

CHRONIC PAIN THAT LEADS TO SUICIDE (2 stories, 2 articles)

Doctors tell me strange things after I tell them PGAD is making me suicidal.

A month ago, I went to see a gynecologist at a Women's Center and told her I have PGAD, she said she didn't know much about it, and that I probably knew more about it than she did.

Among the many things I told her about it, I explained that about 5 years ago a doctor performed MRI's on the brains of several women with PGAD, and found that PGAD registered as an extremely active area in the brain --in the section that controls itch.

Then I explained how I have had chronic back pain for a number of years as well, due to my scoliosis.

What followed was her strange, monotone response, "Well, it is understandable then, that you are having suicidal thoughts, because the two most likely candidates for patients who commit suicide are those who suffer from chronic itch and those who suffer from chronic back pain."

I have searched the Internet to see if her claims are true, but cannot find anything. It must be in those medical journals that the public (we little people) don't have easy access to, and really, I'm not surprised.

I did find these articles however, and am posting their links below. I warn you now, I am going to be annoying as hell as getting them out to you, my dear friends and family, (via fb, tagging, blogging, e-mails) for one, because I lost my father due to the failure of his Pain Physician, and many other Physicians, who did not take seriously his threats of suicide due to his physical pain.

My father was NOT suicidal before his chronic pain. He was a healthy man, dancing all night at his grandson's wedding reception the month before his chronic pain began. He outlasted the young people on that dance floor! He loved and embraced life, and his family was his treasure. He did not wish to end his life, but 3 months of unrelenting pain, of incompetent doctors, and pain so intense he could not sleep, he could not see but one way to end the pain: suicide.

I want to point out here that one night, somewhere toward the last weeks of those 3 months of my dad's pain, my mom had called me crying, worried about my dad, so I repeatedly called and left messages with my dad's pain physician until he finally called me back. I told him, "You have GOT to do something! He is threatening to kill himself!" The doctor told me, bluntly, "I have done all I can do for your dad" which by the way, wasn't SHIT, because he mis-diagnosed my dad and had him on the wrong kind of drugs, and then the doctor said to me, "All I can tell you is to get him to the ER." So the doctor called the ER, and that night my mother took my father the ER, where they bolted him in a room behind a steel door, like a prisoner, did not give him any pain meds, and had an armed guard stand outside. It was a terrifying experience for my parents, especially my dad.

In the first few years after my PGAD began, I voluntarily admitted myself to 2 different Psychiatric wards. The first time was because I told my state-funded counselor I was feeling suicidal because of my PGAD (which, by the way, was 7 years away from being discovered as an actual disorder, so she diagnosed me as OCD). The State-funded counselor sent me to the State-funded ward, where I was taken through six bolted security doors, like you'd see in a prison. When the nurse at the head desk was going through my bag, she actually took out my vibrator, turned it on, and held it up in the air for all the other mentally ill patients and staff to see, and started making fun of me saying, "What's this for girl, huh? huh?" The room burst out laughing. Then, when I finally saw the Psychiatrist and had my only 20 minute session with him over my 3 day stay, he suggested that maybe I had not experimented enough sexually in my life and should venture out and try things like lesbianism. It was truly a healing time for me, and I am so fucking thankful for my time there.

My second experience was almost as bad. I was at a ward with a "good reputation" in Gainesville, Fl. My 2nd day there, I was having a panic attack and called in a nurse and she told me, "You got nothing to complain about. I wish I could stay home all day and masturbate like you" and then the head psychiatrist diagnosed me as having a sexual addiction. It was another costly and agonizing experience.

But besides all that, the important thing I really want to stress here is that the WORST THING a doctor can do is admit a PERSON WHO WANTS TO COMMIT SUICIDE because they are in CHRONIC PAIN into a Psychiatric Hospital, where they are surrounded by mentally ill patients --and doctors and nurses who are (supposedly) trained to take care of mentally ill patients --so the chronic pain sufferer is even more isolated and misunderstood than before...which makes them EVEN MORE SUICIDAL!!!

"Chronic pain is defined as pain that lasts longer than 3 months. Some experts define it as lasting longer than 6 months."

Can you even imagine that? Let me tell you, it changes you. It fucking changes you. It wears you down, body, mind and spirit.

So my second reason for posting these articles is because I am now at the place where my father was. Like my father, I love life! I adore my husband and our son, our pets, our new home, our family and friends! I love traveling with my family, creating art, and just embracing the wonderful things this life that God has blessed us with. I did have a time where the PGAD was under control so I could enjoy some of these things, but for 6 months now, it has been Chronic, and it has changed me.

I know that there are millions, MILLIONS more out there who suffer from some form of Chronic Pain, and they suffer alone and feel suicidal, and it is a problem that the medical community, and dare I say, the Church, has paid little attention too. Yes, I said the Church, but that's a blog for another time --and please, for love of God, those of you who feel the need to defend the church because of my statement, well, unless you have had Chronic Pain for 17 years, you should just hold your freaking tongues and say your prayers for me as your hooves trample upon my pearls.


This first article was written sometime in the late 1990's, and the 2nd was written in 2009.

The articles kind of say the same thing. The first one is more urgent, and the second one more journalistic-like with the focus on government and money and probably written by someone involved in politics (I almost said a republican, but really, I think all politics are bullshit, b/c our votes don't count anyway, and if you think they do, well, that's a lovely dream. I believe The Kingdom of God should be separate, but like I said that's a blog for another day, if I have one. And again, please bite your tongues my dearly beloved know-it-alls, and be thankful no chronic pain has blighted your physical bodies for 6 months to 17 years, and that your head is full of wisdom that did not have to come via physical suffering.)

Friday, February 24, 2012

the long hours of waiting

the blog entry below consists of updates/topics i have been wanting to share, but have not had the will or energy to write about, so i have, instead, copied and pasted parts of messages i have written to friends, and used them as a starting block to expand on, which is far easier than starting from scratch. so here's my update:

from 2/20/12

i'm really upset because i kinda feel like God played a mean trick on me...not that he does that...i think? but anyway, i had to "take care" of my damnable PGAD friday night, and the topamax (the new drug i am on) is making it difficult to climax, so in 3 hours i had about 10 or 12 orgasms, when otherwise it would've been about 30. however, i strangely felt relief, like the old days when it was "under control". when i woke up the next day...same thing...NO PGAD! i was like, "wow, that's really nice of you God! i don't have to spend the next 4 hours in the bedroom! maybe you're actually changing my circumstances! thank you!" then i got to thinking --and that's where i went wrong-- maybe tomorrow (sunday) Jeremy and i can actually spend some time together and enjoy each other's company since he has the day off! we haven't had much quality time together since he's been working full time. i even mentioned this idea to him, and he said it sounded great.

but as i was getting ready for bed Sat nite, i felt my PGAD come back, just like that, and yesterday when i got up, the sensations were at a level like when i'm 4 or 5 days "after taking care of it". then i find out, that this friday, when i have my appt to find out the results of my MRI's, that Jeremy will be in Spartanburg for a guitar show, and friday will also be the night i have to "take care" of things again --because it will have been a week that has gone by ( which is my PGAD's "schedule"), so Saturday i will spend the day sedated as hell. so i'm sad and pissed and all that good stuff.


OMG! THIS is how FUCKED-upped the drugs i am on have me: for over a week now, i have been telling myself AND EVERYONE else that THIS FRIDAY will be the 29th, when i have my doctor's appt. i just now picked up a piece of paper on the table beside me that says "appt: WEDNESDAY, the 29th at 1:15pm." WTF??? checked the calendar, and yeeaaah, i was WAY OFF. well isn't that JUST GREAT??? these are RX drugs BTW, and now i am BEYOND SORELY disappointed. apparently the side effects of Topamax are true: it makes you DUMB AS SHIT. (i almost just spelled dumb as dumn). "rejoice. again, i say..." yeah, up yours!!! ha, i was thinking of writing "go fuck yourself --but wait-- don't bother, because apparently that's MY disorder!!!"

the funny thing (but not really) is that right before i found out i had my appt date wrong, i had just received an e-mail from another woman w/ pgad who said she had to go off topamax b/c it made her forget everyday words, like "phone" "door" or "cup" and she said "watch out, it will make you stupid."

i looked it up, and it's true. it's one of topamax's many bad side effects (such as anorexia), but it's one that is supposed to go away after it evens out in your body after about a month or so. plus being on Xanax, Tramadol and Soma isn't helping my brain fog either. so it was just a HUGE disappointment.

on the 17th, i was really happy to find out that i was accepted to be a vendor at Crafty Feast. i have wanted be a part of it for the past few years, but i didn't apply because i thought i had too much going on at the time --in retrospect, they were certainly not as bad as they are now! after i found out i was accepted i was going to take some time to think about it and pray if i should do it or not, but then i decided that the whole thing was putting more pressure on my mind, and becoming less of a pleasurable idea and more of a stressful one. plus, in their acceptance letter, they asked to let them know ASAP if you were not able to do it b/c they have a waiting list of other artists who almost made the cut who they would have fill in my place --so i wanted to give another artist the chance to do it. another reason i declined is b/c i do not know what April is going to look like, am i going to require surgery, physical therapy? i have no idea, so i just can't commit to anything for that month.

a couple of friends of mine asked how God and i are doing. i guess we are doing okay. i mean, my daily prayer to Him goes something like this,"you know i'm frail, helpless and weak, and i'm so mad at you and want to die because of this torture, so you're going to have to do something --i mean, like do EVERYTHING: heal me body, soul, and mind. i'm nearly at the end of my rope, but i'm still following you're lead and receiving what you give me, even if at times it feels like i'm living off what seems like crumbs falling off your plate. i love you, but i also hate you right now, just like a daughter often has mixed emotions towards her earthly father. so i'm asking you to make this right, soon, please, Father. i'm begging you!"

once, i actually heard someone say that they "knew better than to get angry with God," and to be honest, i was shocked. i believe if we are human, we are going to, at some point, get angry with God, and it seems that all those who were close to God in the Bible got mad at Him at one point or another. He KNOWS IF WE ARE ANGRY WITH HIM, and i think to suppress and deny those feelings, as if we could "hide" them from God, is unhealthy. Any true, open and healthy relationship will not withhold true feelings or thoughts, but be open...and God is not fooled by us. He knows our hearts and minds better than we do. i believe there are too many Christians...and i want to stress TOO MANY CHRISTIANS that are in denial about the depths of pain, anger, and disappointment that they feel towards God, and they hide these feelings beneath pride, self-defense, self-righteousness, always having to be right, concentrating on fixing the problems of others, etc, rather than, and forgive the over-used phrase, "being real with God." ask me how i know this? because Jeremy and i were in-denial Christians until we began to see our Christian counselor in 2008, and then fellowship with genuine, open Christians. i thank God for opening us up to such wonderful truths. now we're real with Him and each other. our situation sucks something awful, but we tell God how we REALLY feel about it now.

The book "Disappointment with God" by Yancey is really the only book God is using to minister/speak to me in a deep way right now. i have to read and re-read paragraphs to really absorb it. i also stay in his word with a day and night devotional i have called "The Tender Words Of God" by Ann Spangler. and sometimes it's what i need to hear, and other times it's some old testament crap that doesn't have an ounce of worth for me. but that's okay.

Speaking of "being real with God", Yancey even describes the moment when Christs calls out to the Father from the cross saying, "My God, My God, why have you forsaken me?" as relating to our own moments of disappointment w/ God.

NOW, i am going to pause here, as i do when it comes to this part in scripture, because i always want to debunk the lie that we have been taught: that it was at this moment that the Father turned his back on the son, BUT THERE IS NO BIBLICAL EVIDENCE FOR THIS. research it for yourself, and even read the book, "He Loves Me" by Wayne Jacobsen to get a truly biblical balanced view of what happened at that moment. You can download the 1st edition FOR FREE!!! GO TO and below the picture of the book, click on Free, 1st Edition, then GO TO PAGE 134.

so, i leave you for now, waiting patiently as i can for WEDNESDAY the 29th, when i will find out the results of my 3 MRI's, and will let you all know the course my life is about to take...until then, the hours...dear God, the long hours...

Thursday, February 16, 2012

when it gets down to be or not to be

J.C. Ryle wrote, "If we know anything of growth in grace and desire to know more, let us not be surprised if we have to go through much trial and affliction in this world. I firmly believe it is the experience of nearly all the most eminent saints. Like their blessed Master, they have been men of sorrows, acquainted with grief, and perfected through sufferings (Isa. 53:3; Heb. 2:10). It is a striking saying of our Lord, "Every branch in Me that bears fruit [my Father] purges it, that it may bring forth more fruit" (John 15:2).
It is a melancholy fact, that constant temporal prosperity, as a general rule, is injurious to a believer’s soul. We cannot stand it. Sicknesses, losses, crosses, anxieties and disappointments seem absolutely needful to keep us humble, watchful and spiritual–minded. They are as needful as the pruning knife to the vine and the refiner’s furnace to the gold. They are not pleasant to flesh and blood. We do not like them and often do not see their meaning. "No chastening for the present seems to be joyous, but grievous: nevertheless afterward it yields the peaceable fruit of righteousness" (Heb. 12:11).
We shall find that all worked for our good when we reach heaven. Let these thoughts abide in our minds, if we love growth in grace. When days of darkness come upon us, let us not count it a strange thing. Rather let us remember that lessons are learned on such days, which would never have been learned in sunshine. Let us say to ourselves, "This also is for my profit, that I may be a partaker of God’s holiness. It is sent in love. I am in God’s best school. Correction is instruction. This is meant to make me grow."

i believe the above. i really do, but as of late, i am weary of it. i truly know, first hand, how God has used my 17 years of affliction to change me for the better. i could write a book on all the things He has created in me, by stripping away my ego, my beauty, my talents, all the things i thought defined me and made me special, and showed me that the most fulfilling identity is found in knowing i am His beloved daughter, and seeing Him show that love to others. He has shown me that the most important, everlasting rewards are loving times spent with my husband and son, as well as my extended family and friends.

He has shown me that i should not make quick judgments of people, but understand that every person has a deep well of pain, fear and rejection, and that they have built their personalities around avoiding those negative things, and some react in ways in order to not "go there", to escape, or to ward off more pain, and that everyone truly seeks love, peace and acceptance, but this often works against people, and makes them very self-centered. i know this because i am one of these people. this is the state of humanity, Christian or not.

i have learned that the good news of Christ is that he became human --throwing off His divinity, like a king renouncing his kingship to woo a maiden, so she would love him for who he truly is, not because he had power and was feared and all that shit. Jesus showed the Father in truest form, and i believe the many translations of the Bible, and centuries of bad teaching, have made Jesus out to be that which He is not --and i do not think that hell is what most bibles/teachings/interpretations have made it out to be either. i believe, in the end, Christ's sacrifice was to redeem ALL of creation, as one of my favorite verses says, "For it was by God's own decision that the Son has in himself the full nature of God. Through the Son, then, God decided to bring the whole universe back to himself. God made peace through his Son's blood on the cross and so brought back to himself all things, both on earth and in heaven." (1 Cor 1:19-20) many, MANY Christians disagree with me vehemently here, and that's okay. no one can say for sure who is right or who is wrong really, but someday we'll all know, and have a good laugh about it. in the meanwhile, it's not a point i'm up to even having a breif chat right now, my day-to-day life is a question of "to be or not to be." not to be dramatic, but hey, i'm a poet and i'm dramatic, it's the way He made me.

now to get down to some nitty-gritty details you may not want to know, but this is the hell that my PGAD has progressed to. Jeremy's birthday party was scheduled for last Saturday, the 11th, and my appt. with my doctor was supposed to be on wed the 10th, but they called and rescheduled it to thursday the 9th. this was bad, because as of late --like the past 6 months-- i have to "take care" of my PGAD, which means masturbating for about 2 to 3 hours, until i am exhausted, and then i wake up and it's back, and i have to "take care" of it for several more hours. my son usually works thursdays, so i am alone and don't have to worry about him hearing the vibrator, or wondering why Mom keeps coming out of the her bedroom every hour all sweaty to use the bathroom, only to go back to bed.

well, my PGAD was bad by thursday night, and i prayed it wouldn't take hours to be relieved. well, about 3 hours passed (from 4am to 7-ish) and that was about 30 orgasms, and i finally fell asleep. i woke up the next afternoon, PGAD back, and this time, it took, not 2, not 3, but 5 HOURS until i finally felt relief. by the end of Jeremy's party on Saturday night, the PGAD had returned. this, by the way, is accompanied by daily chronic back pain. severe chronic back pain.

the pain meds are, at the very least, taking off the edge, and slowing down how quick they build, but they also make me very drowsy, foggy, forgetful, and they are downers, and i don't like it.

i had my MRI's on monday and tuesday, and i called the pain dr b/c my appt was scheduled for 3/9, and i asked to see him ASAP, to know the results and where we go from there --but the only opening he had was on the 29th. so i took it.

my hope is that God is going to reveal the cause behind these 17 years of torment and finally bring it to an end, and allow me to enjoy the wonderful blessings of a relationship of love with Him, and my family and friends, and not go day to day flip-flopping between that hope, and the fear that my end is coming soon. i love life, you see. i adore life and my family, but living in chronic pain in my back and with this PGAD, and taking more meds than i ever have in my life (Celexa, Tramadol, Soma, Topamax, Xanax, Velivet, Flonase, and Lidocaine patches) is not embracing the life i long to live. i'm just surviving in this comfy chair with my footstool, heating pad, laptop and television...and it's a sad existence. i'm so over it.

Thursday, February 9, 2012

current diagnosis

i had my first appointment today with a Pain Physician, which went very well, as in he's a very attentive, sympathetic and knowledgeable doctor, and after listening to my PGAD story, he talked to me about the possibility of having a Caudal nerve block --which is one thing i have been wanting to do.

Then he examined me by testing my reflexes, and was really surprised at his findings. then, while rubbing my middle back, i flinched in pain and he asked, "Does your middle back and neck hurt?" and i said, "all the time". he then proceeded to tell me the following, which he briefly explained, but i also looked up on the internet when i got home, and this is, believe it or not, the short version:

1) I have Autonomic dysreflexia, also known as hyperreflexia which is a state that is unique to patients after spinal cord injury at a T-5 level and above. Autonomic dysreflexia means an over-activity of the Autonomic Nervous System. It can occur when an irritating stimulus is introduced to the body below the level of spinal cord injury, such as an overfull bladder (even bladder spasms or pregnancy). The stimulus sends nerve impulses to the spinal cord, where they travel upward until they are blocked by the lesion at the level of injury.

2) I tested positive for Hoffmann's sign.
The Hoffmann sign is used by examiners assessing patients with symptoms of Myelopathy (spinal cord compression).

3) I tested positive for Clonus.
Involuntary and rhythmic contractions of muscles when they are stretched, is known as clonus. There can be several clonus causes, which are generally neurological disorders. It is often considered as a sign of several health conditions, related to the nervous system. Lesions in the upper motor neurons are the most common cause of clonus. These are the motor neurons, that arise from the motor region of the cerebral cortex. Motor neurons are basically concerned with carrying impulses from the brain and spinal cord. Any damage to the nerve tract, particularly between the brain and the level at which the peripheral nerves come out of the spinal cord can cause clonus.

The Doctor said he wonders if my PGAD is a miscommunication of the nerves due to the 3 things above, and that whatever injury i have in my spine is locating in my clitoris. i am thinking he may be right.

it's funny (but not really) that the tests he did to determine the above diagnosis are tests which no one else has ever done during all these years i've had PGAD, and all they are simple little reflex tests that can reveal serious complications. while he was doing the tests, i could not help but remember that after all the damn testing my Dad went through with doctors in ATL, it was one doctor at the Mayo clinic in FLA that i watched, alongside my Mom, do these same reflex tests on my Dad that in the end determined he had small fiber neuropathy. the similarity frightens me, and makes me ache with grief....oooh....lord.

alright. anyway...back to the present:

my Pain physician is going to review the pelvic MRI's which I had done a few months ago, which, strangely enough, came back fine, with no injuries or abnormalities.

In the meanwhile, he has ordered 3 MRI's, one of my Cervical Spine (neck), Thoracic Spine and my Lumbar Spine, for THIS COMING MONDAY AND TUESDAY (2/13 and 2/14).

He's sending me to a different imaging center than i went to for the pelvic MRI (thank God). The imaging center he is sending me to is apparently top-notch, and does not make mistakes like the last place i went so they had to re-do my MRI's --and that place was in one of the biggest hospitals in my city!

He prescribed me Topamax/Topiramate, an anticonvulsant that works by decreasing abnormal excitement in the brain, which he says may or may not help.

so as happy as i am that God seems to be leading this Doctor to find the source behind my suffering, i am also scared, because the above diagnosis could be from spinal injury, but they could also be lesions or tumors, which may require surgery, AND THEN, IN THE END, they may not be the source of my PGAD at all, but just other complications!

in the meanwhile, here's something positive: i am throwing Jeremy a birthday party (with Jeremy and Jonah's help) at our new house this Sat nite. i love him so dearly, and wanted to give him a party surrounded by his friends who also love him. he deserves so much for hanging in there with me, and for growing with me through all the awful and wonderful and horrifying and beautiful 17 years we have had together.

Jeremy is truly the love of my life, and our son, Jonah, oh lord, Jeremy and i overflow with love for that boy --it's a love beyond words.

i'm certain the love parents feel their children must pale in comparison to the love our Heavenly Father has for us, His children --even if i doubt His love so often (esp with such suffering)-- i cannot deny that He has been incredibly faithful in helping, healing, strengthening, teaching, blessing and guiding me, my husband, my son. i love Him for that, and am forever grateful.

i pray for Him to help me to continue to trust Him, because this may soon be an agonizing, frightful journey i must go on. if anyone fails in being faithful, it will be me, not Him.

Monday, February 6, 2012

in the early years of my PGAD, before i was on any type of medication, there seemed to be certain things that would trigger the sensations, like if i got stressed or upset, or got in an argument with my husband; watching any intimate scene --even kissing-- in a movie or on tv, and riding in a car could also bring them on, as well as someone, even a friend, talking about sex. yet, during those same years, i could just be cooking, going for a walk, painting, food shopping, having a fun time with a friend at lunch, or sitting in church, and my PGAD would flare up.

during those years, a behavioral therapist had me journal each time my symptoms came on, to see if, perhaps, i was having thoughts that i was not consciously acknowledging that might be triggering the PGAD. and i tried, i really did, because i wanted nothing more than to get better, so i kept a journal for about 3 months, and sometimes there WERE thoughts i realized i was having while folding laundry, like, "I'm not a good mother", and the sensations would begin, but other times, there were no negative thoughts at all, in fact i could be in a good mood, having positive, hopeful thoughts, and the PGAD would flare up.

when Paxil was helping me, the triggers of stress, arguments or getting upset with my husband actually diminished, but i would still change the channel or look away during intimate scenes on tv, just to be careful. those scenes are, after all, created to arouse the viewer, and i still avoid them.

someone recently asked me how i was able to masturbate when i had a child to take care of, and this is the answer to that question: taking care of my PGAD was difficult those first few years after he was born. i would "take care" of it when he was napping, and at night after he fell asleep. sometimes i'd have to drop him off w/ my husband's aunt, who knew about my situation and was very understanding, and i'd do it then. but by the time he was 2, and i had been into 2 different psych wards --which were the most awful experiences of my life and will write about another time-- my husband and i decided to put our son in a day care 5 days a week so i could take care of my PGAD. thankfully he really liked his day care, so i didn't feel like a bad mom for putting him in a day care so i could relieve myself when needed. thankfully, by the time he was 3 i was prescribed Paxil, and i would only have to relieve myself about once a week, so on those nights, my son would sleep in bed w/ my husband and i had a cot in my son's room to relieve myself, and after i had taken care of it, i'd just sleep in the cot.

then when my son was 5, about to turn 6, we moved from Florida to South Carolina, and kept the same routine, and then when he was about 7 and no longer wanted to sleep in bed with dad --and my husband was kind of tired of it too-- tho thankfully it was a super king size bed, so there was plenty of room-- we made our small office into my own bedroom, and i actually began sleeping in there every night.

before the first 20/20 show i was in aired, they had a clip of it, a preview i suppose, on-line, and w/out really thinking, we let our son watch it with us. he already knew Mommy had a problem "down there" that sometimes made me cry, or stay in bed all day, or why on some days we didn't do home school or other activities, and also why our vacation times were limited to 5 or less days. we just called it "Mommy's problem" and i told him it was like a bad feeling of having to pee that sometimes wouldn't go away. he was 10 years old when he saw the 20/20 clip and there i was, saying "i have to masturbate in order to relieve the sensations", and he exclaimed "ew, that's gross Mom!!!" and he ran out of the room and started himself a bath. about 10 minutes later he called me into the bathroom, and he said, "I'm sorry i said that Mom. i am also sorry you have to do that because of your problem. i want you to know that i love you more today than i ever have."

my son, at age 10, with a truly compassionate heart for his Mom. i was moved to tears, and thinking about it now, i am teary eyed again. his heart is still as compassionate, but now that he's a teenager, we don't talk about "Mommy's problem" except that he mentioned to me, about 6 months ago, that he noticed how i have become more depressed over the past couple of years, and he asked me why, and i just said, "My 'problem' has been getting worse because my medications have stopped working." and he responded, "i'm sorry. that sucks. but you'll get better. just pray, ya' know?" and he gave me a big hug. he still asks me weekly how i am doing, if i am feeling okay. in the past few months, during times when he has unfortunately seen me breakdown crying during a panic attack, he has come over and hugged me and kissed my cheek, saying, "it's gonna be okay, Mom." God, i love my big, little boy.

i do hope things are going to be okay, for my sake, but especially for my son and husband's sake. God, dear God, please make things change. please make them okay again.

Saturday, February 4, 2012

from bad to worse

things started to go bad last year, bad enough that i began to ask for prayer among those closest to me. it was a slow decline, as the Paxil i had been on for...maybe 12 years approximately...began to lose it's effectiveness with my PGAD, which stands for Persistent Genital Arousal Disorder, and used to be called PSAS (Persistent Sexual Arousal Syndrome) but the word sexual threw people off, doctors included, giving it the impression that this syndrome had all the ingredients that make up sexual desire: emotional lust, longing, the yearning to have sex, and the response of genital arousal. but this disorder is absent of all those things except the genital arousal part, and trust me, it's hell.

the women i know who have this disorder live lives of torment. the majority of women i know who have PGAD feel as though they are on the verge of orgasm, ALL the time. can you imagine how difficult it is to spend time with your family, do housework, go to lunch with a friend, talk on the phone with a relative, go to church or go food shopping when your clitoris is escalating with sexual arousal --often to the point where it hurts. all you can think about is relief --like when you have an extremely, painfully full bladder and all you can think about is finding a place to urinate and relieve yourself --but imagine that after you urinate, that in 30 seconds, 5 minutes, or maybe (if you're lucky, a few hours) and suddenly that feeling is back. that is as close to an analogy i can give to people who do not have this disorder, just exchange the full bladder feeling with extreme sexual arousal, and there you have PGAD.

i know in my interviews on television and in magazines i said my pgad began when i was in my 3rd week of pregnancy, but after reviewing the years of my life, i remember having "bouts" of PGAD that began when i was around 18. i would wake with the PGAD, feel the urge to masturbate, and then it would come back the next day, but these bouts only lasted about 3 days. this happened a handful of times, and i even went to a gynecologist in the summer of 1994 because i had just had a bout of PGAD and was about to go on a 2 week trip to England (a missions trip of all things) and i was worried it would act up while i was there. the gynecologist seemed perplexed, examined me, found nothing and said maybe it had to do with my urethra and gave me an RX for an analgesic. i was fine on my trip, but such analgesics never worked again, once my PGAD came on full force in 1995.

speaking of urethra's, i want to pause here, and go back to my early elementary school years when i suffered for a long time with a sense of urgency even when my bladder was empty. i even remember touching my clitoris to locate exactly where the sensation was, and that was the place. my mother took me to my doctor many times, who never found a urinary infection, and in the end he decided to do a procedure to stretch open my urethra. i'm not sure it worked, b/c all throughout my life i have had the need to urinate much more often than my friends, to the point where my friends commented on it, often.

so then in 1995, in my 3rd week of pregnancy i wake up with PGAD, and have had it ever since. i know a woman who has had PGAD her entire life, and i mention this because i believe that some women, such as myself, were pre-wired --no, that's not the word i'm looking for-- but something in our physical make-up was going to go awry at some point, whether at birth or later in our lives, and we were going to become PGAD sufferers.

there is A LOT on the web if you want to research PGAD (which was not recognized as an official disorder until 2001) and the different ways it manifests in women, and there are dozens of theories as to why. this is a good site for info, plus you can see the 1st 20/20 interview i was in (i've been on it twice) in 2006:

in any case, as to where i am now w/ my PGAD, is a bad place. you see, after years of torture --with practically non-stop PGAD, where i had to "take care" of it, as in masturbate (a deed i loathed and continue to despise to this day because it is being forced upon me) in the morning, afternoon and at night, each time taking about 2 hours to have 3 consecutive orgasms and with only an hour or two of relief in-between. i saw a slew of doctors, was hospitalized twice (which is hell if you want to know) and finally by the 5th year i had an anxiety attack b/c we were supposed to go on a long road trip which was torture for my PGAD, so i was put on Paxil. Paxil enabled me to live an almost normal life. i still had the PGAD, but instead of having it every day, it would come on about day 5 of a 7 day week, but it grew slowly, and by day 7 it was bad enough where i had to "take care" of it by having about 7 to 10 consecutive orgasms, which took about 2 hours, right before i went to bed. then i would wake up the next day PGAD free, and stay that way for about 5 days, so i could go to church, home school my son, travel again (even on long car rides), have a sex life with my husband without fear, and i was happy.

then, about 3 years ago, something changed: where i used to be able to have 7 to 10 orgasms to achieve relief, it was taking about 15 to 20, then it progressed to 20 to 30, and then, a few times, i would wake up to find the PGAD had returned, so i'd give it about another 5 or so orgasms and feel relieved.

well, things have only grown worse, and in the beginning of 2011, my doctor tried adjusting my Paxil, to no avail. then in August of 2011, tried a variety of anti-depressants and other meds. we tried Celexa, Amitriptyline, meds for overactive bladder, like Vesicare, then Requip --which made me violently sick, as in vomitting and dizziness, but nothing was helping.

now my PGAD is at the point where it requires at least 2 hours of masturbating, only to wake and demand another 2 or more hours, and knowing when i have achieved relief is now difficult to tell. it used to just have a "cut off" point, and i would feel relief and my clitoris had no arousal senastion. but now it doesn't stop tingling and remains very sensitive. about 10 times in the past 6 months, after giving it 2 hours at night, and 2 to 4 hours the next (i imagine the number of orgasms is anywhere from 40 to 60) the feel the PGAD return about 8 hours later, not strong, but enough there for me to be aware of it, like when you realize your bladder is beginning to fill up...but i do nothing about it (except have an anxiety attack), and make myself wait at least 7 days before i masturbate again, because i fear the hell of returning to doing it 3 times a day, every day.

just a few days ago, i reached my 7th day, and i had to give it a total of 6 hours (2 at night and 4 the next day) and i cried and begged God to bring it to an end. finally i just said, that's it, i'm not doing anymore, and i took a xanax, tramadol, and a soma and stayed sedated the rest of the day. that was thursday. friday morning i woke up to feel just enough of the PGAD stirring in my clitoris that i broke out in a sweat of anxiety and ran to the bathroom with diarrhea.

since September i have become quite the recluse. i was put on Valium for a month for my anxiety --and to my delight it also really helped numb the PGAD to the point where i was able to go 12 days w/out masturbating. but unfortunately, i quickly built up a resistance to the Valium in about 30 days, and my hope was lost, again. now i am on Celexa, tramadol and xanax, and for months i flounder between hope for a future, to shaking and crying, believing my life is coming to an end.

if you could see me, i look like shit. i have put on tons of weight, the drugs i am on make me look constantly tired, and the anxiety and depression has aged me.

i am seeing a pain physician on the 8th, and i pray to God that this dr will be able to help me, but as much as i hope, i also fear. it's presently a torturous way of living, and that's why i am writing about it now. expressing and explaining it is good therapy, for one, and i also want to keep a record of this PGAD journey i am on...for myself, and others who may need to relate, or to understand someday.