Ahhh, so this is the post I thought my phone deleted

My faith is really being put to the test. I am experiencing some very "not so good" moments that throw me back into the past. In so many ways, I want to relinquish the past AND future completely and let my thoughts and cares fall only for today, for as the Bible says, today has enough worries of its own. But I fall into the trap of grief, again and again. I know it is a spiritual attack. Why would any force of evil want someone healed, made whole, testify about it, and lead others to the Lord in the process? Do I start throwing out my "get thee behind me, Satan"'s again? Honestly, I'm tired. I got a suggestion to keep doing spiritual warfare and put on my full armor. A Christian would know what that means. So, when my eyes open in the morning, do I say this to the enemy who wants to devour me? I can't. Right now, I am really weak (spiritually.) I am not white-flaggin' it to the devil though. I'm just being honest. I am so spiritually blocked right now though- I need a breakthrough- and that is only something that intercessory prayer can break. The Lord knew and knows my days before I was even formed. He knew I would write this blog post realizing my own inadequacy and my need for an "e-blast" of prayer. So I guess I will do what He says and rest in it. Rest. Today when I was driving home from dropping off my daughter at Vacation Bible School- I thought, "I would like to volunteer, with my daughter, to sing and talk and pray with young children who are in more pain than I could ever be." I was getting a thought for an avenue of ministry. Almost immediately, the enemy comes in with "but you can't do that, because you'll never be well enough for that." Now, you can see why I need a total mind overhaul. What happened to my faith? I have it somewhere- right? God- give me the grace and mercy that I need to continue to believe, that even despite these trials- that YOUR Word promises my complete health! Revive me, Holy Spirit, and send Your fire to burn with fervor again. Show me how to walk in Your Word. Show me how to TALK in Your Word. Show me that You are THAT YOU ARE!!!! Fight my battle, Jesus! Give me the faith again to TRUST You completely!!! You are ALL power, Lord! You will deliver-- IF-- I trust You. And, in your mercy, guide the hands of my surgeon, Prof Aszmann, as he operates on my dear friend tomorrow. You PROMISED us, God! Thank you, Jesus. I need a whole lotta sermon from Dr Herb Jones right now. I need some spiritual backhands!!! People speak it to me, I am open to what the Lord wants to say through you! Ughhhh- God just set me free from this. My ice packs burning in hell is long overdue.

Death has lost its sting

I have never seen a fight so valiant as the one my grandmother has been fighting.  When she was diagnosed with Stage 4 Terminal Neuroendocrine Cancer (tumors in the mediastinum, lungs, and brachial plexus) in the summer of 2009, I was with her at her first oncology appointment.  She bravely took the news and said, "I will do it all.  I will take all the treatments."  And so, she did, and I took her to get her a beautiful wig and watched her brave face, looking in the mirror at her reflection-- all the while, noticing a certain sadness rimming her eyes.  And the jokes that would come after her hair fell out and we just buzzed it off... "so much easier than setting it in rollers!" she would joke.  And then the illnesses due to reduced immunity... the innumerable hospitalizations... then the sadness in her voice not for her failing health but for her granddaughter's failing health and the agony it caused her to watch my young life being taken away by Pudendal Nerve Entrapment.  But, she did not focus on herself.  She would always ask about ME and say how much she was praying for MY HEALING and that all her friends were praying fervently for me, and my physicians, and all the medical trips I went on.  She and I declined together, in our own different ways... the tumors growing but not causing her tremendous pain... yet... her granddaughter... unable to sit or hold her only child.  Oh, the agony on her face as she watched in silence my heart's pain.  But yet, she prayed on.  She stayed on.  She fought through the odds --- even responding to the 3rd line treatment, though the physician stated the response rate as less than 5%.  And the sadness that she felt when, still, I wasn't responding to treatment.  The pain from the cancer started to overtake her right as I was nearing my breaking point, and plans were made to go to Vienna.  She was aware, despite her fogginess from all the pain medications, various other medications, etc., that her granddaughter would travel around the world for her healing, that God promised her, and she laid it all out and prayed for Prof Aszmann and that his hands would be anointed by God almighty.  She never truly understood, (I think) how I really became better, and was continuing to get better, because she rapidly declined.  But, God in His mercy allowed me to be well for such a time as this.... to minister to my mother (her full time caregiver, who moved out of state and quit her job to care for she and my 87 year old grandfather), to be able to DRIVE again to rescue her when she was so weary from taking such impeccable care of her mother.  And I came with the only thing I knew... a song upon my lips, rising from the depths of my being out of the Spirit of God that lives within me.  Now, she is at an inpatient facility, by God's grace, and I had the implicit pleasure of having FOUR generations of women (well, my daughter is only 3) along with my Pastor praying with her, holding her, and me leading us in song -- songs led only by the Spirit of the Lord and the love and appreciation I have for this frail old Ukrainian woman, Irenschka (Irene).  I looked at her in the eyes and said "I am sitting here today because of all the times you hit your knees in prayer for my healing, and God is FULFILLING HIS PROMISE."  I SIT HERE.  Glory to God.  I sang to her in old Slavonic, Christos Voskres (Christ is Risen - by death He conquered death and to those in the graves He granted life.)  Lord, May you continue to be glorified even in our suffering, but in Your divine Mercy and plan, let her eyes open next only in Heaven.

And, reader, if you should read on, read this portion from an essay by John Angell James, 1859, entitled "Christian Hope."

But I now turn with delight to the bright and beautiful contrast, "The righteous has hope in his death." This is one of the few passages in the Old Testament which refer to a future state. "A splendid testimony of the knowledge of the Old Testament believers of a future life. The wicked in his calamity, is agitated with the greatest terror. He knows not where to turn. But the godly, in this last evil, has no fear, he knows to whom to flee, and where he is going. He dies in God's grace, and in an assured confidence of the salvation of his soul, and of the glorious resurrection of the body."

That same hope which sustained the Christian under the afflictions, and purified him amid the temptations and corruptions of life, follows him to the sorrows of death, and the pains of the grave. The same grand and glorious object which had excited his desires and raised his expectations in life, appears still more glorious as it is now near at hand. He rests upon the same foundation, and Christ is still his hope. He may be able, thankfully and even triumphantly, to say, with the apostle, "I have fought a good fight, I have finished my course, I have kept the faith; henceforth there is laid up for me a crown of righteousness, which the Lord the righteous Judge shall bestow upon me in that day." He does not leave the Savior's righteousness to trust his own. The labors, the sacrifices, the holy doings of a whole life, spent in the service of God—add nothing to the entireness and strength of his dependence upon Christ.

Never, no never, do the sins of his life appear more sinful, nor his righteousness more defective and worthless, to the believer, than when he is dying. Never does he appear less meritorious, less worthy—than when he views his character, his conduct, himself—in the light of an opening eternity. It is then, that with a deeper humiliation than ever, he cries, "God be merciful to me a sinner." It is then, that he strips off with a holy indignation the last rag and tatter of self-righteousness, and wraps himself more closely in the robe of Christ's righteousness. And he does hope. Yes. Even the near prospect of his naked soul standing in the immediate presence of a holy God, and with a clear view of all his past sins—does not deprive him of his hope. "I can die," he says; "I know whom I have believed, and am persuaded he is able to keep that which I have committed to him until that day."

Then, when all other hopes are extinguished, this remains. The worldling's expectations all die, not only with him—but before him. He sees one after another failing him. As regards his health, he struggles long against the evidence of increasing decay, and approaching death; until at length the last possibility of recovery vanishes, and he sullenly says, "Well, I feel I must die." In that sentiment is included the failure of all other expectations—his flattering prospects in life, his incipient prosperity, his cherished connections—all fade before his eye like some beautiful vision vanishing in thin air—and he has nothing left. Even the Christian is subject to all this; he too, sees every earthly hope about to expire in death. Yes—but as these stars of the night pale before him, they are lost in the blaze of the rising sin. His earthly expectations dissolve in the bright illumination of heaven's eternal day which already dawns upon his soul. To the question, "What do I have left—when wife, children, home, fortune, prospects, are taken from me?" he exultingly exclaims, "heaven and immortality!"

This makes him willing to go. He dies by his own consent. It is a glad surrender—not a forcible ejection. It is a voluntary departure—not an unwilling separation. The Christian mariner weighs anchor, sets the sails, catches the breeze, turns the helm and prow of his vessel towards the shore of eternity, and sails with an abundant entrance into the haven of eternal rest. He is not driven in, as by the force of the tempest, against his will, and half a wreck. He can take death by his cold hand without a shudder, and bid him welcome. "I can smile at death," said a dying saint, "because my Savior smiles on me." He finds it a solemn thing to die, to go from world to world, to plunge into eternity, to meet God face to face—but he can do it with composure, and, in many cases, with triumph. He descends to the dark valley with the triumphant challenge, "O death, where is your sting? O grave, where is your victory? Rejoice not against me, O my enemy, for though I fall, I shall arise; and however unworthy, I shall live and reign through our Lord Jesus Christ."

It is not an uncommon case for those whose hope was feeble all through life, to have it increased and strengthened in their dying moments. The hands that have hung down—have then been lifted up. The knees that were ever feeble—have been then strengthened. The harp, so often unstrung and hung upon the willows, has then been taken down, tuned afresh, and struck to the swan-like song of the dying saint, whose lips, until then, had uttered only strains of doubt and fear. It is marvelous to see in how many cases the timid and desponding have become bold, confident, and rejoicing in the very face of the last enemy, and under his uplifted arm, brandishing the fatal dart—which for anything they knew, would the next hour pierce them through. What an encouragement to the living, to anticipate that they shall be enabled to hope in death.

Go forward, you fearful believer, there is nothing so terrible to a Christian in death, as your perturbed imagination leads you to suppose. Like every other evil, death diminishes in appearance as you approach it. The Sun of Righteousness often shines vertically over the valley of death. The "excellent glory" sends out its beams into that gloomy pass, to allure the traveler onward. The lights are seen in the windows of his Father's house, and Christ will send out the ministering angels to convoy you to his presence; and, more than this—he himself will come to meet you. He has told you so. Believe him. Expect him. He says, "Fear not, I am with you." Respond to the gracious promise, and say, "I will fear no evil, though I walk through the valley, not only of the shadow of death—but the valley of death itself, if you are with me."

But is there no need of admonition, admonition, and rebuke, to many professing Christians on this subject? Is there not a "sinful love of life" to be overcome, and an equally "sinful dread of death"? Is there not a practical denial of their hope of immortality in the dread with which many, yes, most, look on to the hour of dissolution? Do not infidels and worldlings, with cutting irony, sometimes reproach us, and tell us that we do not believe in heaven, or we would be more willing to go to it. We belie our professions of faith and hope, and should have less love of life and fear of death. "If we believed," they say, "as you do, we would be impatient to die." We deserve the rebuke, and let us profit by it. How forcibly does John Howe expostulate with us, in reference to this unwillingness to die, in the last chapter of his transcendently glorious work, entitled "The Blessedness of the Righteous," a work which as a whole is one of the most sublime treatises in the English or any other language. And how earnestly does Baxter follow up the same subject in the words with which I will close this section:

"What was it that rejoiced you all your life, in your prayers, and sufferings, and labors? Was it not the hope of heaven? And was heaven the spring and motive of your obedience, and the comfort of your life? And yet will you pass into it with heaviness? And shall your approaches to it be your sorrows? Did you pray for that which you would not have? Have you labored for it, and denied yourself the pleasures of the world for it—and now are you afraid to enter in? Fear not, poor soul! Your Lord is there; your husband, and your head, and life is there, you have more there, a thousand-fold more, than you have here. Here you must leave poor mourning friends, that languish in their own infirmities, and troubled you as well as comforted you while you were with them—and that are hastening after you, and will shortly overtake you. And there you shall find the souls of all the blessed saints that have lived since the creation until this age. There all are unclothed of the rags of their mortality, and have laid by their frailties with their flesh—and are made up of holiness, and prepared for joy, and will be suitable companions for you in your joys.

"Why should you be afraid to go the way that all the saints have gone before you? Where there is one on earth, how many are there in heaven? And one of them is worth many of us. Are you better than Noah, and Abraham, and David? than Peter, and Paul, and all the saints? Or do you not love their names, and would you not be with them? Are you hesitant to leave your friends on earth? and have you not far better and more friends in heaven? Why then are you not as hesitant to stay apart from them? Suppose that I, and such as I, were the friends that you are hesitant to leave; what if we had died long before you? If it be our company that you love, you should then be willing to die, that you may be with us. And if so, why then should you not be more willing to die, and be with Christ, and all his holy ones, that are so much more excellent than we? Would you have our company? Go, then, willingly, to that place where you shall have it to everlasting; and be not so hesitant to go from here, where neither you nor we can stay. Had you rather travel with us, than dwell here with us? And rather here suffer with us, than reign in heaven with Christ and us?

"Oh! what a brutish thing is flesh! What an unreasonable thing is unbelief! Shall we believe, and fly from the end of our belief? Shall we hope, and be hesitant to enjoy our hopes? Shall we desire and pray, and be afraid of attaining our desires, and lest our prayer should be heard? Shall we spend our lives in labor and travel, and be afraid of coming to our journey's end? Do you love life—or do you not? If not, why are you afraid of death? If you do, why then are you hesitant to pass into everlasting life? You know there is no hope of immortality on earth. Hence you must pass, whether you will or not, as all your fathers have done before you. It is therefore in heaven, or nowhere, that endless life is to be had. If you can live here forever, do. Hope for it, if any have done so before you. Go to some man of a thousand years old, and ask him how he made shift to draw out his life so long. But if you know that every man walks here in a vain show, and that his life is a shadow, a dream, a vapor—and that all these things shall be dissolved, and the fashion of them passes away—is it not more reasonable that we should set our hearts on the place where there is hope of our continuance, than where there is none? And where we must live forever, than where we must be but for so short a time?

"Alas! poor darkened, troubled soul! Is the presence of Christ less desirable in your eyes than the presence of such sinful worms as we, whom you are hesitant to part with? Is it more grievous to you to be absent from us—than from your Lord? Is it more grievous to you to be absent from earth—than from heaven? Is it more grievous to you to be absent from sinners—than from blessed saints? Is it more grievous to you to be absent from trouble and frailty—than from glory? Have you anything here that you shall desire in heaven? Alas, that we should thus draw back from happiness, and follow Christ so heavily and sadly into life! But all this is owing to the enemies that now molest our peace. Indwelling sin, and a flattering world, and a brutish flesh, and interposing death—are our discouragements that drive us back. But all these enemies shall shortly be overcome!

"Fear not death, then, let it do its worst. It can give you but one deadly grasp that shall kill itself, and prove your life. It is as the wasp that leaves its sting behind, and can sting no more. It shall but snuff the candle of your life, and make it shine brighter when it seems to be put out. It is but an undressing, and a gentle sleep. That which you could not here attain by all our preaching, and all your prayers, and cares, and pains—you shall speedily attain by the help of death. It is but the messenger of your gracious Lord, and calls you to him—to the place that he has prepared for you!"

Schönen, regnerischen Abend...

It is raining here in Pennsylvania. There were moments of blissful sunlight today, and I just smiled up at the sky and thanked God for a simple thing such as warmth. There really is so much to be thankful for...

In the past week, I have been privileged to sing sweet hymns to my dying grandmother, stroking her weary head and cradling her bony body in my arms. I never knew that I could be a ministering angel. Someone put it like this to me, "well, Jessica, she probably cradled you in her arms when you were born... you were her first biological grandchild..." Anyways, what is important is that despite her illness that has lingered on and wracked her body for three painful years now, she has voiced to God her desire to leave this earth and be with Him in Heaven. When I knelt by her bed and cradled her I felt the presence of someone behind me where I at least 5 times looked over my shoulder to see if someone was there. I felt so at peace that I didn't even care if she died in my arms... and I have never been in anyone's presence when they have died before. I pray our merciful God takes her soon.

You know, she always prayed for me and my struggle and BELIEVED for my total healing. Almost 2 years ago, after my TG surgery, she brought me a simple ornamental piece that says "Believe" in script. I have it in my kitchen. I will never stop believing. I have come so far and I give God all the glory for directing me in all the right places. I am so blessed to have had the healing hands of Prof. Oskar Aszmann and Dr. Haibin Wang touch me and help guide me back to the purpose-driven life I so desire to lead. Our physicians deserve more credit! Next time, give them a hug. They may be shocked, but believe me, they deserve it.

I adore my new piano. I am thrilled that when I get up from playing it, the part of me that aches the most is not my pelvic floor or the area where I sit, but my shoulders from tensing up to play the notes with skill and musicality. God is so good! Ohhhh--- glory Hallelujah.

So, as the rain falls, I think to a song that touches me yet to this day, "Even Me."

Lord I hear of showers of blessing thou art scattering full and free

Showers the thirsty soul refreshing, let some drops now fall on me

Even me, Lord, even me, let some drops now fall on me

Even me, Lord, even me, let some drops now fall on me

Father, enlarge my territory. Send me to the nations, if it be Your will. I have my Passport and I'm ready to go. I know You will have me go back to Austria someday. Thank you, God for putting me in contact with Greg Mundis, World Missions Director for the Assemblies of God and the founder and former pastor of Vienna Christian Center. I was so excited to tell him my whole story!!!

Readers, please believe. I love you.

My story

Many have asked to hear a history about what I've been through in my journey. I will attempt to make it clear here, so that I can be of help to others searching for victory over illness and symptoms.

I got pregnant with my daughter in December 2007. It was very easy to get pregnant. I tried only once and was successful. I found out I was pregnant on January 1, 2008. During my early pregnancy, I had to see a high risk OB because I was taking an antidepressant (I had been taking this since age 17 when I struggled with an eating disorder. I tried many times to go off it, but was unsuccessful. The eating disorder ended (praise God) but I still needed the low dose.) I had many ultrasounds. No one said anything abnormal. Everything looked great. During my pregnancy I noticed "hemorrhoid" like symptoms on the left side. Mentioned this to the OB and he said "well, it's rare to have a hemorrhoid on one side only, and you don't really have a hemorrhoid, but I will write you a script for a cream." I noticed that my baby would stay nice and snuggled up on the left side of my uterus. In all the ultrasounds, the techs would always comment how "snug and cozy" she was on that left side, with her growing skull burrowed into the lower left quadrant of my uterus. I never noticed her rolling around in my uterus. She would just poke an arm out here and there, but always on the left side. At about 7 months, the OB said she presented transverse (lying sideways). I was so freaked out because I didn't want a C section. As pregnancy went on, I noticed she was moving less and less. Went for an ultrasound at about 34 weeks and she was A-OK, just snug in there. I would feel her skull so low in that left lower quadrant, nice and low. Well not nice. I worked during the entire pregnancy as a Vocal Director at a Performing Arts Academy and directed many musicals, taught lessons, summer camps, etc. I was very active, walking hills, swimming in my pool on hot California nights after work. She was born on her due date. I started laboring at 4pm that day, went to the hospital by 530pm, walked around until I couldn't take the contractions any more, and via phone the doctor conceded to giving me the epidural when I was 5cm dilated. I was now at peace and rested and they wheeled me to the birthing suite where I just slept and waited. Husband slept and mom slept in the room with me. At about 1030pm I felt a pop despite the epidural (there was no pain, just a pop) and I asked my mom who is a nurse to check and see if my water broke. Well yes, it did. The labor and delivery nurse came in and verified that I was already dilated to 1ocm. Baby coming fast!!! She calls doctor and then comes back and said lets do some test pushes. I am feeling nothing but pressure. I push and my husband sees baby's hair and says, okay, no more test pushing! The doctor isn't here yet! I stop test pushing and vomit (who knows why). Doctor arrives at 1150pm. Baby let loose some meconium so green is oozing from me. Doctor uses vacuum extraction as I am on my third push... performs a fast midline episiotomy...boom, she's out. Low apgar from inhaling meconium, so respiratory therapists are all over her. I see her and she's whisked away to get oxygen. Husband goes with daughter. Mom stays with me as I try to deliver placenta. Placenta does not detatch. Mom watches in horror as the doctor has both hands in me up to his elbows ripping my placenta out of my uterine wall. She later describes this as the most gruesome thing she has ever seen. Doctor declares he has removed all of it, and they do whatever they do to clean me up and doctor leaves, goes back to bed I presume, and I am served a turkey sandwich because I'm starved. Ask nurse how baby is. Husband is still with baby she is doing great and getting oxygen. I am wheeled to my room and wait for epidural to wear off. I see my daughter 5 hours later. I have never had a baby before so didn't know what to expect. Lots of pain in my vaginal/perineal area, like it was ripped apart. She nurses and uterine contractions start. Nursing is a challenge. I try very hard. Bleeding like heck from down under. Told this is normal. I get some ice down there. It's now morning and I want to take a shower. I put makeup on and try to get back in the hospital bed and figure out what I'm supposed to do with my little baby. Her little nose is all smashed to the right.... because she was pressed down so far in that lower left quadrant. I wiggle it around. Will it ever be straight? Yes, says the pediatrician. We leave the hospital.

Fast forward. Nursing is hard. I struggle and struggle. It hurts so bad to sit in the rocker. Is this normal? Mom says yes as I had episiotomy. Stabbing pain! Ouch!!! But baby is crying. Must focus on nursing. Time goes on. 5.5 weeks post partum and I'm still bleeding. Feel like I wake up with a UTI. Only have had one UTI in my life up to this point, which was 8 years prior. Take baby to her check up and mention to her pediatrician that I think I have a UTI... bladder pressure, burning, frequency. Says to go to urgent care. I go, and they say yeah blood in urine (mind you I am still bleeding from birthing this kid). Write me a Rx for Bactrim and I'm off. Three days later, no relief from UTI symptoms. Start to panic. Why is this persisting? Go back to urgent care. They do a culture, change my Rx to Keflex (safe for nursing moms). On my way. Three days later, no relief. Baby is six weeks now. I go to my 6 wk post partum check up. I mention to my OB who delivered her that I have UTI like symptoms. He notices swelling in my urethra and prune-sized blood clots (like chunks) coming out of my vagina. Also notices granuloma on episiotomy site. Cauterizes it with silver nitrate. OUCH ouch OUCH! Takes me in for an ultrasound. I empty my bladder just fine. Tech finds retained products of conception: i.e.: HE DIDN'T GET ALL THE PLACENTA. OB calls to get urine culture results: they are negative. Says due to RPOC, that I need a D&C. In the meantime, he refers me to a urologist for a workup as to why I have these urinary symptoms. Retention, burning, hesitation. Urologist looks at me and says what is this??? I said my OB just cauterized my granuloma at bottom of episiotomy with silver nitrate. He comments that it looks "angry" down there. I press him to give me more antibiotics. Changes me to Macrobid and instructs me to use a hot tub because "these things take time." 8 weeks post partum and I have my D&C, done by the OB that delivered my baby. In and out in 15 minutes. I go home and sleep. Bleeding is stopped in two days. Urinary symptoms persist. There is no infection. What is wrong?

I am referred by OB to a second urologist for a different opinion. He checks me for cystocele - none. Post void residual - none. I mention that I always have this pressure and retention feeling. He gives me Oxytrol patch, an Overactive Bladder patch. Safe for nursing mothers. I am on my way.

Symptoms persist and I am losing control. Baby is colicky, I have no sleep, pain in the pelvis... at 9-10 weeks post partum I begin pelvic floor PT. PT notices my left perineal and intra-vaginal area is very sensitive as compared to right. Presses on bladder - ouch. Tender. Tries internal myofascial release. Calls my urologist and suggests possibility of Interstitial Cystitis. I cringe. HOW IN THE WORLD CAN I DEVELOP IC after having a normal bladder? Urologist isn't convinced I have IC, but agrees to schedule me for Cystoscopy and Hydrodistention under general anethesia at the beginning of January. I will be 4 months post partum.

I am desperate for answers. I search the internet in vain for reasons as to why this has happened. I am hysterical, obsessing about getting better, all the while in so much pelvic pain and trying to care for a colicky newborn. Husband is working 90 hours a week. I have no family in CA. I go to a Sunday night church service - and go up for prayer at the end of service. Our church is 5000 plus members. At this service, there are about 500. Many intercessors line the front of the church, waiting to pray. I walk up to a lady I have never seen. She puts her hands on me and says to me "You are a precious daughter in the Lord's sight. God is telling me He wants to heal your nervous system." She knows nothing about me. NOTHING. Not my name, my reason for walking up for prayer, nothing. God wants to heal your nervous system. God WANTS TO HEAL YOUR NERVOUS SYSTEM. January 13, 2009. I write in my journal that God wants to heal my nervous system --- perhaps nerves in the pelvis??? I thank God.

Cystoscopy and Hydrodistension are normal. Bladder fills to 2000ml and only 5% of the bladder wall in one area show petichial hemorrhages. Urologist is stumped. You do not have Interstitial Cystitis. He changes my Overactive Bladder medication to Detrol LA. I stop nursing as I can't handle it anymore. I am in so much agony over what is going on in my pelvis that I need to have a psychiatrist put me on Abilify to help me stop ruminating over this. Abilify is not compatible with nursing. My baby is 5 months old. I visit family in Cleveland, OH. I make an appointment with a female urologist who specializes in pelvic pain at the Cleveland Clinic. She examines me. Takes me history. She says that there is no way I could have IC. She says that ANYONE would have those small areas of pinpoint petichiae on their bladder wall if their bladder was distended to 2000ml. She encourages me to continue with pelvic floor PT. At this point, I have made no progress with PT. She writes me a script for Amitriptyline, 10mg. She switches the Overactive Bladder med to Enablex. It doesn't work. I quit Enablex and stay on Amitriptyline.

I return to CA. I stop going to pelvic floor PT as I am not progressing. I am lost. I figure once and for all I will rule out this diagnosis of Interstitial Cystitis. I travel to San Diego, CA and see Dr. Lowell Parsons, a pioneer in Interstitial Cystitis, and the man who helped to invent Elmiron, the drug for IC. After a 5 minute consultation, he concludes I have IC. Dismisses the opinions of the urologist at the Cleveland Clinic and the one in my hometown in CA. Instructs me to take Elmiron and to start doing bladder instillations of lidocaine, heparin and sodium bicarbonate. Self-cathing. Incredible.

I tell my husband of the news. He is not in agreement. He says I still do not think you have IC. But, if Dr. Parsons says you do, well then, try the Elmiron and do the instillations.

I do instillations. They do not help. The pelvic pain persists. I am unable to have intercourse. Baby is now 8 months. I have not been breastfeeding for 4 months. My period has not returned. I return to the OB that delivered my baby. I mention that my period has not returned. I am not pregnant as I have not had intercourse due to the pelvic pain. The nurse practioner puts me on Provera 10 days to induce a period. This fails. No period. Every month I feel as if I am getting a period, but nothing comes out. What is wrong? My bladder is a mess and now I am mysteriously not getting a period? We move cross-country to PA. Baby is 9 months old.

We go on a cruise. I feel like I have a yeast infection. I take Diflucan for yeast. Lightning zaps of pain in my vagina begin. Burning does not go away, despite 3 Diflucan pills. What is wrong with me?

I come home. I establish myself with a GYN in my new hometown in PA. She says we need to figure out why you have not had a period since giving birth. Baby is now 10 months old. She puts me on Provera again 10 days. No period. Refers me to a Reproductive Endocrinologist. The best in the city of Pittsburgh. I see him. He orders a sonohystogram. I go to radiology and they try to poke the catheter through my cervix to see into my uterus. The radiologist can not get the catheter through the cervix. He says that my cervix is stenosed (scarred over). He says you will need surgical exploration of your uterus. At the same hospital, I see a urologist for my continued bladder symptoms. She says, well you must have IC because the great Lowell Parsons diagnosed you with it. Shoos me out of her office. Peace be with you.

The Reproductive Endocrinologist sets me up for surgery. He will perform a Laparoscopy and Hysteroscopy of my Uterus. At the same time, the urologist will take a peek in my bladder through the cystoscope. During surgery, he finds that my uterus is 40% scarred shut. This is called ASHERMAN'S SYNDROME, and it is a result of the D&C that I had at 8 weeks post-partum for the retained products of conception. It only happens to 1% of women who have had a D&C post partum. He removes the bands of scar tissue in my uterus and over my cervix. Because the blood that was to be shed during my period could not get out, it backflowed into my pelvis and caused endometriosis, which he also burned off. Additionally, he notices a SEVERE uterine abnormality: a subseptate bicornuate uterus. Basically, a heart shaped uterus with a division (septum) down the middle. He removes the septum the best he can. After surgery, he remarks that conceiving and carrying my daughter to term is a verified miracle, as only 12% of women with a subseptate bicornuate uterus can even get pregnant. Most miscarry or their babies are born 4 months early because they grow out of room. That is why my daughter grew so low in my pelvis and hardly moved much. She had to survive. So she burrowed herself at the bottom of my "heart". Her skull pressed against my left pudendal nerve. What is a pudendal nerve....?

Daughter is 1 years old now. Uterus is fixed, I start having periods again. Bladder symptoms persist even though after the cystoscope done during my Lap/Hystero does not convince my new urologist that I have IC. 3 urologists against the great Lowell Parsons. If I do not have IC, WHAT DO I HAVE? I agonize.

At the beginning of 2010, I join the gym. I start the elliptical and I hit it hard. I work out like a fiend. I get more burning in my pelvis. The bladder symptoms increase. No meds are working. I continue to exercise. I run on the treadmill. I notice that I have pain when sitting. Burning and tingling all over my pelvis. Urinary retention to the point I have to press on my bladder to let urine out. I start pelvic floor PT again. She notes incredible spasm at the left obturator internus muscle. What is on the other side of that muscle? The PUDENDAL NERVE IN THE ALCOCK'S CANAL. Burning increases and sitting is difficult. I have stabbing pain. My husband Googles my symptoms and comes up with a website called TIPNA. The International Pudendal Neuralgia Association. He says, "I think you have Pudendal Neuralgia, and possibly a Pudendal Nerve Entrapment." I decide I want to see the best pelvic floor PT, so I start going to the director of Women's PT in Pittsburgh. She prescribes 2x a week pelvic floor PT. I am in agony. I have a knife in my vagina. I have a knife in my anus. I cannot sit. My bladder is a mess. I can't empty it. I lose weight. My daughter is 18 months old. I am in agony. I join Pudendal Hope. It is a forum. I hear about an MRI that can visualize the pudendal nerve and possible entrapments. I read about what the 5 doctors in the great nation of the United States recommend. They recommend Physical Therapy to the pelvic floor. They recommend a CT guided pudendal nerve block. I call the head of neuroradiology at UPMC. He has never done a CT guided PN block. I am the first. He does two blocks at the same time, one at the ischial spine and one at the Alcock's canal (left side only). I am numb. Bliss. I go home. I flare from the steriods. I am in agony. The block was positive: indicative of pudendal nerve entrapment. They do not do the 3Tesla MRI in Pittsburgh so I fly to NYC and have a 3Tesla MRI of the pelvis with and without contrast. Dr. Hollis Potter speaks to me after the 1 hour test. She shows me the images. She says, "your pudendal nerve is entrapped in scar tissue at the base of your pelvis, at the anterior margin of Alcock's canal. I do see bilateral scarring, but the left is 90% worse than the right." (All my symptoms are left sided). She also sees EXTENSIVE PELVIC CONGESTION SYNDROME (huge varicosities in the ovarian veins, pressing on the pudendal nerve.) She recommends that I have ovarian vein embolization to see if that helps the PN pain. I take this back to my PT, and I say, "will any amount of PT remove scar tissue from around my pudendal nerve?" She says, no. I QUIT PT. I am in agony. I cannot sit. I cannot eat. I cannot take care of my child. Bowel movements cause agony. I call and set up an appointment in AZ, with Michael Hibner, MD. He is a surgeon who operate on the pudendal nerve. I also have my ovarian veins coil embolized at my local hospital. The pain persists. The varicosities are not the cause of my nerve pain. My daughter is almost 2. I fly with my husband to AZ. I see Dr. Hibner and his pelvic floor PT, Loretta. Loretta concludes that I will end up in surgery, for surgical decompression of the left pudendal nerve. Dr. Hibner is conservative and wants to try Botox into my left pelvic floor muscles to see if it is just spasms pressing on the nerve. I fly back out to AZ in September 2010 for Botox. The Botox does not relieve my pain. I am scheduled for TransGluteal Pudendal Neurolysis of the left side on November 5, 2010. My gluteus muscle is cut through. My Sacrotuberous ligament is cut. The pudendal nerve is exposed. It is neurolysed along its entire course, from it's roots to the terminal branches. The only area of entrapment was at the entrance to Alcock's canal (the posterior end). However, the nerve was neurolysed along its entire course, regardless. My Sacrospinous ligament is cut and the nerve transposed forward of the ischial spine. The Sacrotuberous ligament is repaired with a cadaver graft. I am closed and a wound vac is put over the wound. An On-Q pain pump is inserted and drips marcaine directly onto the nerve in Alcock's canal. I cannot pee after surgery. I am sent home a week later to PA with a Foley catheter in place. I end up with a horrible bladder infection. I take Cipro, it is cleared. I start walking slowly. I am so weak. I am in so much pain. I start taking oral Valium. After the pain pump is removed after a few weeks, I start taking Lyrica. I cannot sit. I am in agony. There is still so much pain. There is burning in my feet. I stand up and there is foot burning. The showers are tough because my feet burn. Is this due to my unstable pelvis that is recovering? 3 months post op and I finally sit on a cushion to drive to Target, 1 mile away. I have a nanny for my daughter, now age 2. I spend most of my days on the couch in agony. 4 months post op and I venture out to the mall with my friend, on a day that my daughter goes to daycare. (Mind you, I cannot care for her, because I am disabled). I carry a frying pan that I bought. I flare so badly I am on the couch for an entire month, popping Percocet. Nothing helps. I ice and I ice my crotch. I give myself frost-burn. I double the Lyrica dose to 300mg a day. I can't see 5 feet in front of me. It is dangerous to drive. But yet, my nerve is freed right??? I still cannot lift my daughter or care for her. At 8 months post-op, I am still in so much agony and I now develop an intolerance to Lyrica. I am burning from head to toe. My entire body is on fire. I fly to AZ for yet more Botox. This time it will be bilateral Botox. I mention the foot burning and hypersensitivity in the pelvis. Dr. Hibner says we should infuse Ketamine during your Botox procedure and for 4 hours afterwards. I leave the hospital the next day and take a shower and notice the foot burning is gone. I fly home, still in agony. August and September come. My daughter is now 3. I am in so much pain. I still cannot sit. We conclude the Botox is a failure. The foot burning persists, but the pudendal nerve pain is so great that that supersedes the foot burning. I am dying in nerve pain. We conclude that I must still be entrapped. I have always felt in my heart that I was entrapped still, even after the TG surgery. Remember, my MRI said I was entrapped at the base of the pelvis, at the anterior (distal) margin of Alcock's canal. But wasn't that decompressed? So I thought. Alas...

Dr. Hibner wants to help me so bad. He doesn't know to as of yet. It is late September. I cannot live anymore in this agony. We contact Prof. Oskar Aszmann in Vienna, Austria, who tells us via email that I sound like a perfect candidate for a decompression of the pudendal nerve via an anterior approach, at the urogenital diaphragm. We fly to Austria.

I am examined by Prof. Aszmann and a 17mHz ultrasound is performed by his radiologist, Dr. Bodner. The nerve is visualized in a mess of scar tissue. I am in 10/10 pain as he presses on the lateral side of my vaginal wall (left). I go into surgery.

He finds my nerve severely entrapped in scar tissue at the distal Alcock's canal (anterior) and the perineal branches of the pudendal nerve have tried to regenerate into scar tissue, forming a neuroma. The source of my pain. He decompresses the microscopic branches of the pudendal nerve. The nerve and its branches are severely swollen. He decompresses them and removes convoluted dilated veins from around the branches and main trunk of the pudendal nerve. The right side proves normal. I am closed up.

I have been validated. Validation. My nerve was still entrapped. It was entrapped for just over 3 years in a mess of scar tissue that was caused most likely from the episiotomy and manual removal of my placenta at the time of my daughter's birth.

I hug Prof. Aszmann, my dear friend. I fly home. 3 weeks post op I start water walking in the therapy pool at the gym. I want to prevent scar tissue. 4 weeks post op I notice that my legs are burning more. Not just my feet but my legs now. Both legs. Before it was just both feet. Yet, now there are color changes. Huge red rashes appear on both feet and halfway up my calves. The inside and tops of my knees are rashed over. I cannot tolerate water walking anymore. The pudendal nerve pain gets better. I start sitting! I can tolerate a tampon! I can have intercourse!!! Oh my GOD! (((God wants to heal your nervous system)))

I am burning. My body is burning. Why? What is going on? I go to a new pain physician. I am diagnosed with CRPS Type 2 (Complex Regional Pain Syndrome, Type 2, nerve injury). CRPS/RSD can be caused by two things: an initial nerve injury, or trauma to a nerve. The symptoms I exhibit of CRPS only started after my TransGluteal neurolysis. Since patients with CRPS are at more of a risk for the CRPS spreading, they tend to avoid surgery. However, I knew I was still entrapped, so I HAD TO HAVE SURGERY. I HAD to have surgery in Vienna.

I am sent for Ketamine infusions at the Cleveland Clinic. 5 days, outpatient. I am paralyzed. Not only paralyzed in fear, but literally. Hallucinations.... audible voices....agony....

The CRPS pain is gone. No more redness/discoloration/burning in legs or feet. I come back to PA. A week after the infusions are complete and the burning returns. I pray and pray and CLAIM VICTORY AND CLAIM THE PROMISE THAT JESUS GAVE ME. The pudendal nerve pain continues to improve. The burning persists.

I digress. The Lord has given me many promises. I have DECLARED DESPITE THE AGONY THAT I WILL BE COMPLETELY, COMPLETELY AND TOTALLY HEALED FROM EVERYTHING IN JESUS' NAME. I testified before, during and after. I continue to testify. I WILL BE HEALED.

FRIEND, DO NOT GIVE UP. ISAIAH 45:2-3 IS A PROMISE VERSE THAT WAS GIVEN TO ME. It says, "I will go before you and cut through the bars of bronze and break down the bars of iron, so that you will know that the LORD thy GOD, which call you by name has done this. I will give you the treasures that are HIDDEN in the darkness. "

My Lord has chosen to use doctors to bring about my healing. I give GLORY AND PRAISE TO HIM. All wisdom comes from the Lord.

May You continue to be glorified in me, Lord. I KNOW, THAT I KNOW THAT I KNOW, that the healing will BE COMPLETED IN ME. For HE THAT BEGUN A GOOD WORK IN ME WILL COMPLETE IT UNTIL THE DAY OF CHRIST JESUS.

Haven't been here

I haven't blogged in a really long time! I really haven't felt like it. Well, I've felt like it, but sometimes talking to a screen about your issues just re-enforces them. So, I've taken a break.

Well, I had more surgery. I had the very surgery that I should have had from the very beginning. I had an approach that was lateral to the perineum, and access easily the madly entrapped mess of perineal branches of the pudendal nerve and the distal pudendal nerve in the Alcock's canal. Yes --- this is what it was --- all along.

I am very thankful for the physicians that have helped me along the way... caring physicians like Dr. Michael Hibner, MD of Phoenix and Dr. Lynda Peterman, MD (anesthetist) of Phoenix. My primary care physician, Dr. Nicholas Fuerst, MD, and his wonderful office manager, DEBBIE! Oh we became PROS at writing appeals to insurance companies, eh Debbie?

I am very thankful for Prof. Oskar Aszmann, MD of Vienna, Austria. He impacted my life tremendously because in a surgery that may have seemed like a routine neurolysis (albeit complex and in need of someone with great skill), he gave me a shot at a new life. A better life. I feel perfect peace about going to Austria to have surgery.

One of the things that is so impressed upon my soul is the difference that a physician can make in a patient's life. I implore doctors who might happen upon my blog to realize this. Especially when it comes to such a specialized area and condition such as PNE.

I digress----- I looked up at the TV and the Miss America pageant is on! Chronic neuropathic pain has impacted my life so much that I look at the smiling faces that I used to stand among while participating in pageants, and I wonder how many are cringing with pelvic pain. I wonder how many have been abused. How many have eating disorders. How many hide under the covers and cry endless rivers of tears because of something they can't change.

Through my journey, lots have said "try to distract yourself". Well, there is a lot of pain that comes with healing. Unfortunately, due either to the initial nerve crush injury itself, or the numerous pelvic surgeries (not just the neurolyses) that I have had, I am in the 2-5% of patients that developed Reflex Sympathetic Dystrophy, or Complex Regional Pain Syndrome. Just like I was among the 1/100,000 that developed PNE, and the 1% that developed Asherman's Syndrome (uterine adhesions) after a post partum D&C.

Looking up again --- sorry for the diversions, but I am actually a real human and not just a "physician without a degree" specializing in pelvic nerve pain --- the STRONG MAN competition is on TV! Where do these HUGE men come from!!! Yoi! Swedes...??? Maybe eating to stay warm really is something they must do up there ---

The guacamole I made tonight was horrible....... yuck.

Anyways, back to the blogging. I hate the word blogging. It is such a dumb, made up word!

So, here I am.

And until I float in a cat-embossed tin can far above the moon, I guess I will continue advocating for people who got pooped on by the bird while riding a bike -- people that were totally normal, then BOOM.

I hate bowling!