Hope is on the Horizon...

"....In Christ alone, my hope is found, He is my light my strength, my song. This cornerstone, this solid ground, firm through the fiercest drought and storm...."

I remember when I was leading worship in CA, and an older member of the church asked me to learn this song and sing it for our congregation. Only until I have reached such points of desperation in my life such as the present have I realized the precious meaning of these words.

"....what heights of love, what depths of peace, when fears are stilled, when striving ceased.... my comforter, my all in all, here in the love of Christ, I live."

Life with Pudendal Neuralgia/Pelvic Floor Dysfunction (as I now call it, since my nerve is "unentrapped") has been rough lately. I have had a lot of flare ups. My sweet baby girl is learning to use the potty, and I squatted to hold her on the potty at a public place instead of my usual kneeling down. That did me in. What is it? The muscles surrounding the nerve that flared it? The severed sacrospinous ligament? The nerve itself? Oh, Lord.... have mercy on my dear soul.... stop my worrying mind from always thinking the worst. Whew. Thank you, Jesus. Your peace came quickly. I didn't do anything permanent... I just, well, FLARED it. GRRRRR. Roaaarrrrrrrr. Arr, matey. Whatever.

It all stinks.

I'll get better, and soon. Yes, hope is on the horizon. We did NOT have peace about having the right sided decompression. We cancelled it. My husband and little angel prayed nightly that mommy would not have to have any more surgery, and praise God, I pray that I never do again. This is a great step! Instead, I will be flying to Phoenix to have bilateral Botox injections and an ultrasound guided nerve block of the dorsal branch of the pudendal nerve to see if that branch is involved (that is the only branch that cannot be decompressed during the transgluteal approach that I had in November). Dr. Hibner has seen quite a lot of success in his post-surgical patients with Botox. I hope so. I had it before the surgery and it did not seem to help much. I know my pelvic floor is a hot mess of charlie horses, so it's gotta do something. I have hope.

If you are reading this blog, please do a few things: 1) praise God with me for not having to have the surgery 2) pray for me that this Botox helps and 3) pray that either complete healing comes soon or we get raptured --- no, seriously --- Maranatha! --- (Come, Lord Jesus!)

On a less serious note, I have a curl "stick" that I use to make waves in my hair. My little princess got hers curled too, just like mommy's, before church today. Ahhhh, my little clone. She is a blessing from the Lord. God love her sweet angel soul.

Also, bless the LORD for my husband. God LOVE HIM. He puts up with me. How does he do it? The strength of the Incredible Hulk. Seriously, through God's Holy Spirit and His mercies that are new every morning does he put up with me and this illness. I love him so much. I can't wait to enjoy our lives after the canker worm is done with his eating. (A little ol' King James for you, there.)

Hallelujah! Jesus is Alive!!! I just had to say that because my daughter sings it constantly.

Be blessed and have FAITH. And, Maranatha.

We need more

I have come to the realization that this country, this world, the chronic pelvic pain sufferers like myself who struggle to get both in and out of bed every day deserve and need more doctors and medical professionals to treat and hopefully solve the enigma of Pudendal Neuralgia and Pudendal Nerve Entrapment.

There are so many doctors out there. At a recent wedding I attended, (how I made it through, I don't know... it must have been my supremely cute outfit), I spoke to a well-seasoned urologist about how he was struggling to find a junior partner so that he might retire someday soon. Where are all the specialists going?

I must get back on track. So, it doesn't really take a specialist to learn about PN/PNE, just a motivated medical professional who is willing to study cadavers, learn the mechanics of the Pudendal Nerve, its purposes and its duties, and how it can become compressed or entrapped. Then, the most important of all is HOW CAN WE UNENTRAP THE NERVE IN THE LEAST INVASIVE METHOD POSSIBLE WITHOUT SUCH POOR SURGICAL OUTCOMES?? I know my doctor cares tremendously about his Pudendal patients. I think he is to be commended because he is actually teachable, for being such an accomplished professor and individual himself. Where are the drugs for neuropathic pain that don't come with SEVERE and sometimes deadly side effects?

I hope there is a medical student, resident, fellow, or even attending physician that is reading this blog entry right now because their patient presents with mysterious pelvic pain symptoms. Consider what nerve innervates the majority of the pelvis. Look to the source of how pain signals are even transmitted to our brains..... nerves.

If you have read my previous blog entries, you will see that I have a Bachelors and Masters in Music. NOT MEDICINE. However, I am a patient keenly aware of my body, where my pain lies, and I will not stop my big mouth flapping about this disease until it is as easy to cure as appendicitis.

Help me by posting, emailing me at fightpne@yahoo.com, or contacting me on this blog. I need help. WE NEED HELP. I speak for so many others. SO.MANY.OTHERS. For doctors that have this disease, for PhDs who have had to stop their teaching due to this disease, for singers/songwriters paralyzed by pelvic pain, for young mothers desperate to know what is wrong with them, for cyclists and former engineers who now live on disability.

And, I must close with this: God have mercy on us.

Anxiety will be turned into VICTORY

I am anxious. Be anxious for nothing, but in everything with prayer and supplication, with thanksgiving, let your requests be made known to God. (Phillipians 4:6)

And? And the peace of God, which surpasses all understanding, will guard your hearts and minds through Christ Jesus. (Phillipians 4:7)

Sooo.......... God (talking in Junior Asparagus voice for added effect), I know you're bigger than the boogie man (my pain, the pudendal nerve entrapment, whatever). So, will you come into my mind and guard it and take me out of this pit, this circle of hell that the enemy wants me to remain in? (Ok, Junior Asparagus wouldn't go that far to say that....) Junior would just say, "God, fix my problems, mkay? Thanks, Love, Junior"

Junior didn't take any Ativans. Junior was not on Valium. Junior fell and got a bruised knee and just knew God would fix it. I want Junior's faith.

When I went to the Cleansing Stream retreat this past weekend, I heard a few things. Many interceded for me for specific things. One thing I was told twice is this verse: My grace is sufficient for you, for my strength is made perfect in weakness. (2 Corinthians 12:9)

Another time, when I was renouncing the spirit of infirmity, the prayer partner simply knew I had nerve damage in my pelvis. He told me while praying for me that God would unravel the scar tissue from around the nerves and space would be made for them. Prophetic? I think so. I bet you any money this is what I need. Well, I know I have scar tissue and I know the Alcock's canal is a tight squeezy of a space.

Surgery. 5 weeks from today I will be done with my right sided decompression. I am praying that at the same time, Dr. Hibner can fix what needs fixed on my left (always has been my worst side, even after these 6.5 months). Please, God, please please please please please I am begging you take my pain away. Show your MERCY!

I can hear from God the most clearly when I am entrenched in deep worship. I was so fortunate to be able to attend the Bay of the Holy Spirit revival in Youngstown, Ohio recently. I wrote to my PNE friend, A, from CA, who was watching the revival live online at the time, via text after God showed me this during worship:

A, I want healed so badly. God gave me pictures of His love for me, while carrying the cross. His nerves were severed for me, He cried on the cross as He died for me, His mother wept, He cried in pain on the cross but He did it so I would be healed.

He was mocked and scourged and spit on but he had MY healing in HIS wings when He flew forth alive from that tomb.

Every tear He cried as He had his nerves ripped apart, He did it so that mine would someday be made whole.

I wanted to put this into writing, not only so I would remember, but that someone else might be touched. You may not even suffer with Pudendal Nerve Entrapment, but just put your request in the spot of where I put "nerves" or something else.

I haven't blogged in weeks as I've been so physically attacked. God thank you for giving me the strength and endurance to write this tonight.

I want to share a song God has put on my heart. It is a very anointed song. God bless.

A Bit of Revelation...

The other night, I posted the song "Not While I'm Around." It is from a secular musical, Sweeney Todd, which is one of my personal favorites in terms of music. Beautiful songs, such as the one above, also "Johanna" and "Pretty Women." Beautiful, haunting, deep melodies.

A praying friend of mine on Facebook whom I have met due to our mutual love for the Bay of the Holy Spirit Revival made a great comment to me after reading my last blog entry and listening to the song. He said, "J, why don't you look at this song in a different light...since you said God speaks to you in songs, maybe He is speaking to you through THIS song too."

While I had posted it as a song for my daughter, I had to think about what this praying friend said. And then I took a look at the lyrics, and thought about God's love for me, through this PNE journey, and life in general. While not ALL the lyrics apply directly, the gist does.

Not While I'm Around (from "Sweeney Todd")

Nothing's gonna harm you, not while I'm around.
Nothing's gonna harm you, no sir, not while I'm around.

Demons are prowling everywhere, nowadays,
I'll send 'em howling,
I don't care, I got ways.

No one's gonna hurt you,
No one's gonna dare.
Others can desert you,
Not to worry, whistle, I'll be there.

Demons'll charm you with a smile, for a while,
But in time...
Nothing can harm you
Not while I'm around...

Not to worry, not to worry
I may not be smart, but I'm not dumb.
I can do it. Put me to it. Show me somethin - I can overcome.
Not to worry, ma'am.

Being close and being clever
Ain't like being true
I don't need to,
I would never hide a thing from you,
Like some...

Nothin's gonna harm you. Not while I'm around.
Nothing's gonna harm you, darling
Not while I'm around.

Demons'll charm you with a smile, for a while,
But in time...
Nothing can harm you
Not while I'm around...

Wow.

My love for my daughter

This journey with PNE has been so hard on my family. On the three of us. Today/tonight was especially difficult, as I'm experiencing more and more of a new symptom.

When I can, and tonight was one of those nights, I suck up the pain and sit in the rocker/glider that I put together when I was 8 months pregnant, rock my angel baby to sleep, and I think of songs like this. Tonight, I couldn't even get out any words for her sweet ears to hear. I just had her listen to my heart.

I want to sing again..... God, the pain that encompasses every possible realm is just overtaking us. In your mercy, please send your angels to surround us and go before us, making a way.

This song is the epitome of a mother's love for her baby. And I love Barbra Streisand.

There is a River

Lord Jesus, when I first heard this anointed song, years before I had PNE, it spoke to my heart. Let all who listen to this song be touched by your mercy and love. And, Lord, you know my prayer is to minister this song with my own voice.... again.... someday.... in your mercy, let it be soon.

Whispers

"My Lord!" I cry. "Where are you? You see my pain, you see my suffering, you KNOW, O Lord the magnitude of it. " I am here.

"Lord, PLEASE, PLEASE take this pain out of my body! In the name of Jesus, as You declared in your Word, I command this pain to be removed from my body, by the power and authority in Your blood." I will heal you.

"Father God, I cannot bear this anymore. My life is passing me by. You know my heart's cry! I cannot hold my daughter, I cannot sit to rock her to sleep. I do not have any closeness, intimacy with my husband, God we are UNABLE because of the pain! Why, God, why?" Wait, I say. Wait. I will do it.

"But, I had a glimpse of hope! Would it get better? I thought it was! Lord!! Why am I flat on my back again? Why, Lord Jesus? Trust Me.

"When, God, when? Oh, Lord, WHEN? We cannot bear any more of this!! Please help us!" I will restore to you the locusts have eaten. Wait, I say.

These are the whispers from my Lord when I cried out to Him this morning, in agony, desperate. I share them with you to encourage you and to re-encourage myself.

"I have loved you with an everlasting love, I have called you, and you are Mine."