Holding on

Life has been testy lately. The patience is wearing thin in this household. Our daughter will be 3 soon, which means three years of the biggest blessing (her life) and the biggest curse (my PNE). Would I change it?

NEVER.

The last few weeks, I have come to understand the depth of the blessing the Lord has given me in A. She is so wise, so smart, so intuitive, so creative, such a mixture of J and I, it's just wonderful. She is potty training, and being the strong-willed toddler that she is, has been giving us a run for our money. It's so odd, but through her recent struggles with constipation and fear of "it hurting", I have learned how much a mother can love.

While holding her in my arms, (laying on the floor, of course, for now, at least) after she cried her eyes out after we had to wipe her sore bum, she said through her tears, "Dr. Hibner will fix my bottom." I just burst into tears myself. My angel. My sweet angel. Oh, how she has listened to my pain, and agonized with me in her own innocent, baby way these first three years of her life! Every night, we pray for Dr. Hibner and everyone with PNE. We pray for their knowledge and wisdom, strength and determination to help those suffering with this horrible condition. She's been hearing the prayers of myself and my husband since we started praying with her at about 16 months of age. And now, when her tiny, baby bottom hurts due to diaper rash, she wants Dr. Hibner to fix her. How sweet! I said, "honey, you'll never have to go to Dr. Hibner, I promise, but he WILL help mommy, and he has helped many other people like mommy."

My thoughts change a bit now. We know I need an anterior approach to surgery. While we pray, and wait, as I type here tonight, a calm comes over me. I haven't even been going to church that much lately, or reading my Bible, or have even felt close to God much because of all the stress and pain. But, I know that the Lord Jesus Christ PROMISED ME that I would be completely healed. I will tell you what the enemy of my soul tries to tell me. "Oh, you're just HOPING that with your NEXT surgery, whenever that may be or whomever does it, that you'll get better, but you'll just end up right where you're still at, on the couch with an ice pack. " Or, "you've got just one more shot to get it right, or it's a LIFETIME OF CHRONIC PAIN, PILLS, AND THIS!" Bwahahahahahaha! Devil, get thee behind me! You SUCK! You are a rotten, dirty, bold-faced LIAR. You couldn't keep Christ in the grave, and you can't keep ME from getting my HEALING.

I've gotta get my boldness back --- my loudmouth --- shouting it loud and proud that God will heal me of this rare, mysterious illness. Yes, in the flesh, I am scared. But I know one thing, I was given a VOICE to sing His praises and I will SPEAK his mercies until He is merciful to let me sing again. Until then, my sweet angel A will sing in her beautiful baby voice those lovely, made-up songs about how mommy's bottom will be healed.

So sweet, so innocent, so true. She is my voice, my song, for now...

So, look at that picture at the top of this blog entry. Is Jesus still sitting on a cross with his broken body ripped up like roadkill? No. He is waiting to reveal to this family HIS MERCIES, that ENDURETH FOREVER.

God bless all who pray so diligently for my healing and for this family. May you be richly blessed.

My new mantra...

I am not giving up. Some may choose to accept this as their lot in life. I can't. There is something within me that will not allow me to accept this as my lot for the rest of my life. I am 30 years old.

Yes, I have struggled for 3 years now. I have had so many pelvic procedures I can't even count them all. I AM NOT GIVING UP. I think I am blogging this so I can preach to myself. DON'T GIVE UP!!!! YOU CAN'T GIVE UP!!!! NEVER GIVE UP!!!

Lately, I've been struggling with my identity. I used to be J the singer, J the performer, J the super-wife, J the voice teacher, J the worship leader, J the gospel choir member, J the daughter, J the sister, J the friend.....

Far too often, I am J, the young lady who suffers with this rare, hidden, debilitating nerve injury.

This has got to stop.

I am a wife. I am a mother. I am a daughter of the King, of the Lord Jesus Christ. I am saved by grace, and not by my own works. I am ALIVE!!!!

Really?

Am I alive?

Where are you, J?

My prayer is that when the Lord so chooses to reveal to me my healing and wholeness, that He wipes away any false identities assigned to me by the enemy of my soul.

Lord, let it be now.

Back again, but in the shadow of His wings

What a beautiful picture. Our wonderful Lord, cradling a precious young girl. This is the love I have for my daughter. Oh, how she is a blessing to my (our) lives! After being gone again for recent treatments in Phoenix, she came home to a hurting mommy again, but told me in her sweet voice, "Mommy, you'll be better. You're ok."

How simple and how poignant her faith. What an angel.

I have so much to learn from her. So much.

Recent trip to Phoenix was eventful. I met with my amazing doctor, Dr. Michael Hibner, and as always, he was innovative, proactive, and determined to help in any way he could to rid me of my pain. I am 8 months post decompression. I had a dorsal block which was negative. No dorsal surgery, Praise God! He believes the flare cycle is just being precipitated by muscle spasms. Bilateral Botox was the word. I also had a short infusion of Duramorph and Ketamine to help central sensitization, but I don't think it was long enough. He wanted to do it longer, and I was willing, but with no pre-auth, I was afraid of a huge bill. I want to continue believing God that this is it, that I will make no more trips for treatment, that my Botox will work, relieving the spasms, taking pressure off my decompressed nerve, and allowing it to heal in PEACE.

I ended up with lots of side effects from the Duramorph. I'm just one of those lucky ones I guess. Infection is being taken care of. My dear hubby joked that he doesn't know what to remove first, my "bladder or my brain." I laughed and laughed. He thought I would be mad. It just goes to show that sometimes I do sound like an idiot. He helps me to trust God. Thank you, J!

But, I continue to read my Charles Spurgeon Morning and Evening devotional. And last night, it was so wonderful, because sometimes I just feel like this. Very frequently, in fact. And, it just reminded me that our Savior is readily available to cradle us in His arms as we cry. He has an endless reservoir for our tears, and not one is missed. To God be the glory!

Do Not Be Silent

"To You I will cry, O Lord my Rock; do not be silent to me, lest I become like those who go down to the pit." -- Psalm 28:1

A cry is the natural expression of sorrow and a suitable utterance when all other methods of appeal fail. The cry, however, must be directed to God alone, for cries to others are often wasted pleas. When we consider the readiness of the Lord to hear and His ability to help, we have good reason to direct our appeals to the God of our salvation. It will be useless to call to the rocks in the day of judgment, but our Rock answers our cries.

"Do not be silent to me." A person limited to reading written prayers, may be content not to have prayers answered, but genuine supplicants must have answers. These are not satisfied with results that only calm the mind or subdue the will; they must receive actual replies from heaven or they cannot rest. And they want those replies at once, for they dread even a moment of God's silence. God's voice is often so terrible that it shakes the wilderness, but His silence is equally full of awe.

When God is close, do not be silent. Cry with greater earnestness. When your notes grow shrill with eagerness and grief, He will not deny you a hearing. What a dreadful situation you would be in if God were to become forever silent. If God were silent to you, "you would become like those who go down to the pit." Deprived of the God who answers prayer, you would be in a more pitiable plight than the dead in the grave. It would not be long before you would sink to the same level as the lost in hell.

We must have answers to prayer. Ours is an urgent case of dire necessity. Surely the Lord will speak peace to our agitated minds. He never can find it in His heart to permit His own elect to perish. --- Charles Spurgeon

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."

Tears

Tears

My tears fall down

thick as the rain

that drops on my steps.

Pouring out of my soul,

out of the depths of my being,

out of everything I am.

They start in my heart

and move to my mind,

and back again,

back again.

An endless circle of pain

that no one understands...

My tears fall as the rain.

Grieving

I haven't blogged in a few weeks. Life is emotional, busy, complicated, dramatic, frustrating, joyful, all wrapped in one.

But right now, it's full of some grief.

Definitions and explanations:

Grief is a reaction to a major loss. It is most often an unhappy and painful emotion.

Causes, incidence, and risk factors

Grief may be triggered by the death of a loved one. People also can experience grief if they have an illness for which there is no cure, or a chronic condition that affects their quality of life. The end of a significant relationship may also cause a grieving process.

Everyone feels grief in their own way. However, there are common stages to the process of mourning. It starts with recognizing a loss and continues until a person eventually accepts that loss. People's responses to grief will be different, depending on the circumstances of the death.

For example, if the person who died had a chronic illness, the death may have been expected. The end of the person's suffering might even have come as a relief. If the death was accidental or violent, coming to a stage of acceptance might take longer.

Symptoms

There can be five stages of grief. These reactions might not occur in a specific order, and can (at times) occur together. Not everyone experiences all of these emotions:

• Denial, disbelief, numbness

• Anger, blaming others

• Bargaining (for instance "If I am cured of this cancer, I will never smoke again.")

• Depressed mood, sadness, and crying

• Acceptance, coming to terms

What I suffer with out of the above: anger, depressed mood, sadness and crying. At some times, I feel like I've come to a place of TEMPORARY acceptance. However, due to my faith in Jesus and that He died for not only my sins but all my diseases and illnesses, it is temporary. I cannot lose faith that I will be completely healed.

Today I talked with a PNE friend and jabbered about our mutual illness. We are both so confused as to which way to turn. Why didn't I just open my mouth and start talking about Jesus instead of rationalizing over this doctor and that doctor? France or Arizona? Cut the ligaments or go a different route and risk re-scarring? Spend a ton of money or get it covered by insurance? Longer recovery or shorter recovery? Less nerve handling or more nerve handling? Ahhhhhhhhhhhhhhhhhhhhhh!

Lord, let it be well with my soul.

In my own self, I cannot deal with this. I cannot bear this anymore. I take ten steps forward and it seems like eleven back. I grieve because I didn't think my life would EVER be this way. Never in my wildest dreams. I'm the girl that still doesn't take ibuprofen for a headache.

God, why do you put me through so many fiery trials? I know it's for Your glory, Lord.

Why can't I hear more from you, Lord? Just trust and believe.

I am so motherly. I would love more children. The doctor said no more pregnancies. All I really ever wanted was to be a wife and mother. I am. But, God, I am SO NOT THE WIFE AND MOTHER I WANT TO BE!!! I AM SO HELPLESS!!! HALF THE TIME, I DON'T EVEN FEEL LIKE A WIFE AND A MOTHER! I FEEL LIKE A NOTHING, AN ICE PACK, A HEATING PAD, AN ELECTRIC SHOCK, A MESSED UP PELVIS.

I want to minister with my voice again. I am so sick of not singing with the PGC. I can't take it. I truly felt my ministry was alive there. Why take me away from it, Lord? Just trust Me.

Will I ever have another baby, a sibling for A? If it's in My will, but until then, you focus on Me and your healing first.

Oh, Lord, what song best fits my grief? Give me a song, Lord God.

You know me, Lord. You've searched my soul. You've given new life to me. You bring me joy, you bring me fire, Lord. You know me, Jesus. You know me, Lord.

You know me, Lord. Each step I take... you knew before, the world was made. You formed my innermost being. Jesus, you alone, You know me, Lord.

So Lord tonight, as I grieve... you knew this day, you knew it'd be. I won't forget, Lord, the joy you've brought to me. You saved my soul, you gave me fire, you've given me everything, Lord... You will most certainly heal me.

You know me, Lord. You know my heart. You know my faith at times, can seem so small. But Lord, you knew this day'd be here... You give me hope, Lord. You give me words, Lord. You say to me, Lord, TRUST AND BELIEVE.

Things that constantly amaze me...

I gave myself frostbite!!!

Yikes, right? Well, it's actually frost-burn, to be specific, and it's 2nd degree. I sure hope it goes away. As many of you with PN(E) know, ice really helps neuropathic pain. Well, I got these lovely new ice packs that just hang out there, and I don't listen to the old wrap them in paper towel or use only for 20 minutes rule. Whoops!! Big whoops. I have these grayish-brown burns on the skin covering my Alcock's canal, more prominent on the right than the left (boy, I sound like a Potter MRI report!) My friend is really into homeopathy, and gave me Arnica mixed with Witch Hazel. So far, no increase in pain, but no decrease. And I can't use the ice for like 2 weeks!! Ughhhh!! What will I do? Ouch. So, I say this as a warning. Don't get too used to that nice ice feeling. You could be frostbiting your darn crotch off!

Anyways, as an aside, I was on my feet from 10-230 yesterday and did good! No real increase in pain, and I felt like I was walking, dare I say, close to normal??? It's funny, as I am saying this, I just got a major nerve zap, and I haven't had one for over a week, OUCH!!! Grrrrrr......

If anyone can get me good airline ticket prices, I want to go to the Bay of the Holy Spirit Revival in Mobile, AL . I find it hard to believe that due my misfortune, when my browser closed yesterday by accident, the ticket prices had TRIPLED in one minute. I got to talk to Peggy over in Timbuktu and he/she assured me that they had no control over it.

A friend with PNE has been fortunate to go to 3 revival services. She has yet to be healed. I'm so proud of her for going though, because I'm SURE God revealed so much to her through those services. I hope He confirmed in her heart that she will INDEED be healed of this awful disease. A lot of people are wondering why I feel the need to go to an out of state revival when "revival starts in our hearts." Well, I want to be in the presence of people who are mostly dead to themselves and want all of God that they can. I want to hear the rushing winds of the Holy Spirit. I want to see signs and wonders (yes, I know, they can be done locally... we just need to exercise those gifts more and get "out of the box.") I want my faith to be taken to a HIGHER level. I LOVE TO WORSHIP. I want to worship for hours and hours. I would pray God gives me the stamina to worship for hours. I love to be in His presence. I love to SING!! (DUH) I would love to have worship go on forever. I'm excited for Heaven.

Okay, so I know this post got wayyy off of PNE, but you all know I am a Christian. Recently, my husband and I came across some clips off YouTube of the Brownsville revival from the late 90's. This one struck my heart and made me cry.

A's Mommy's 4 month post-operative report (Hibner)

THERE IS HOPE

Dear friends,

I wanted to share with you my 4 month update. I am now 4 months post-op from LEFT sided pudendal neurolysis with Dr. Michael Hibner, Phoenix, AZ. I've posted along the way here and there, concerns, etc., but I want to try and break it down a little bit.

--Before my surgery, I was in 7/10 pain as soon as my feet hit the floor in the morning. My left Alcock's canal felt like a knife was stabbed through it. With every step I took, I felt a horrible pinching, burning, pulling sensation in the crease of under my buttock and perineum. It would send neuralgia (tingling, burning, shocking) into my vulva, up through my piriformis and all over the place. By 12 noon, I had to lay down completely prone (on my stomach) and it would take at least an hour for the pain to subside.

Post-surgery (4 months) --- there is no stabbing in the Alcock's canal when my feet hit the floor. There is no pulling, pinching, stretching sensation. There ARE devastating (at times) new symptoms such as electric shocks that feel like lightning strikes my crotch. However, I have been told this is a GREAT thing as the nerve is regenerating and the shocks should subside and get less frequent over time, which THEY ARE.

--Before surgery, I took no pain pills (opiods). I was only on 300 mg Neurontin 2x a day, Vaginal Valium suppository 10mg once at night, 10mg Amitriptyline at night, and Prozac 20 mg once a day. I did not take opiods because they did not work for my neuropathic pain, plus I have a toddler and had to look after her. It was only after my Botox that I gave up and had to hire a nanny part time and put her in daycare. I couldn't do it anymore.

Post-surgery (4 months) --- I took Percocet for a while in very low doses (maybe only 2 pills a day at the max) for about 2 months post-op. This helped with the incisional and ligament repair pain and sacral pain. It did nothing for the nerve pain. The thing that helped the nerve is the ON-Q pain pump. I swear by it. I wish I had a permanent one! Now, my meds are Valium (oral) 5mg 2x a day, Prozac (which will most likely and hopefully soon change to Cymbalta --- I see the psychiatrist Friday), Lyrica 75 mg 2x a day, and the Amitriptyline 10mg at night. I also take TONS of vitamins --- a multivitamin with no iron because I don't want constipated, colace, Miralax, High Potency B Vitamin complex for nerve health, Vitamin D, and cranberry pills, also Culturelle (a probiotic)

At 3 months post op, I started driving short distances, using no cushions. I lean back in my car, sorta, while driving. I feel my right side a lot more while in the car (as you can see in my signature, I will have another TG later on this year for my right side). While walking, I feel my right side pinching, pulling, stretching, but NEVER to the same degree my left side was before my surgery. The left side was way worse (as indicated by clinical examinations by Dr. Hibner, Loretta, and by the 3Tesla MRI I had by Dr. Potter). I started PT at 8 weeks post op. I started internal PT at 12 weeks post op and gave up after two internal exams, which flared my right side so much it had me down for the count for a whole week. My right side needs done.

Good news --- my left side feels softer internally than my right side. This has SWITCHED since before my left sided surgery, where my left side was as hard as a brick. The nerve is no longer entrapped, so the muscles have either atrophied due to lack of use, or they are calming down.

---Sitting--- hahahaha... not so much. I can sit on a completely hard surface for about 30-45 minutes with no nerve pain, just pain and pressure from the ischial tuberosities. My husband made me the modified Antolak gardner's kneeling pad cushion thingamabob and that helps some. Ice in the Alcock's canal still feels the best.

As the weeks go on, I am noticing less pain on the left and more on the right. Remember, my right side is still entrapped.

My ligament feels completely solid and grafted. My PT said with ligament repairs, at 4 months they should be good to go. I'm still careful though not to bend it <90 degrees. Still too chicken. Picking up A still causes a bit of an increase in pain. I am getting stronger. I am eating more. I have gained weight. This is good.

BOTTOM LINE: I HAVE MANY BAD DAYS. I AM TRYING TO FIND THAT "BALANCE' BETWEEN DOING TOO MUCH AND NOT ENOUGH. We still can't have intercourse. However, I am thankful and eternally grateful that I had the surgery with Dr. Hibner because there was nothing else. My life was zero. Life is coming back. I have accepted that my nerve may take 12-18 months to fully heal. I am glad I have come to that acceptance. You will still see me on the boards complaining from time to time, because I'm a human, and I don't know what to expect. However, I don't regret it FOR A SECOND. I NEEDED THAT SURGERY. It saved me. Thank you, Dr. Hibner, but most of all, THANK YOU JESUS! YOU PROMISED ME I'D BE HEALED, AND SOMEDAY I WILL BE COMPLETELY HEALED.

I hope that this post gave some people hope. That is what we are here for : HOPE.

God bless,

A's Mommy

God wants me to say this (to myself... maybe you too?)

Have faith in God. For assuredly, I say to you, whoever says to this mountain, 'Be removed and be cast into the sea,' and does not doubt in his heart, but believes that those things he says will be done, he will have whatever he says.

Therefore I say to you, whatever things you ask when you pray, believe that you receive them, and you will have them.

And whenever you stand praying, if you have anything against anyone, forgive him, that your Father in heaven may also forgive you your trespasses.

But if you do not forgive, neither will your Father in heaven forgive your trespasses.

-----------------------------------------------------------------------------------------------------------------

So, these are the words of Jesus, from the Bible, from Mark 11: 22-26 (Mark chapter 11 verses 22-26).

Oh, God, how HARD it is to trust. But, when I became a Christian, I swore my allegiance to you and to Your Holy Word, that I would believe everything therein. So, in regards to my mountain of PNE, if I let faith arise, it will be moved. How long? I don't know. I'm not going to sit (haha, I don't sit, YET) and do nothing and just wait for God to open the genie bottle of wishes. In the meantime, I will try to be there for my friends that suffer with PNE and with my other friends and family that have other problems that aren't PNE. My husband suffers with hearing loss that is generational. I want his mountain moved off him. I have many friends and family that are alone and wishing for a spouse. I want their mountains moved. Be thou MOVED!

BELIEVE. That is my one word. www.myoneword.org. I learned about this in MOPS. (Mothers of Preschoolers)

Also, for you PNE people, I bought TheraPearls Ice Packs. They really rock.

What good am I?

You know, I had a revelation. I can't give up. My heart is too big. I want to help. But what..... wait? I'm not better yet!! How can I help?

I can give support.

I can give encouragement.

I can be real.

I can pray.

I can praise God.

I can BELIEVE.

I love my PNE friends, my fellow sufferers... someday, we will be fellow people who are BETTER and freed from this horrible hell pain that is all-consuming. I pray that it is replaced with the all consuming fire of the Holy Spirit. I pray that we are all used for the Lord.

On a side note, you may be a family member suffering because your spouse is in so much pain and torment, and you have no way to reach them. You may be a hurting mum, worried about her son/daughter's seemingly incurable disease.... watching them crumble before your eyes while you can't do anything about it.... You may be a neighbor, a friend, watching your pal fade away, threatening suicide, feeling despair.

Yes... more reality from the PNE world. Oh, God, I pray the PNE doctors read my blog somehow and that they can see how truly important they are to us suffering. They aren't Gods. They are only men. But, God can use their hands to heal. Please let them know that. And, we patients aren't crazy. We only want a slice of life back. No..... we want IT ALL. We deserve it all!!! We are human. We want peace in our bodies. I will continue to pray and "roll in my holy-rolled-ness" (haha) for these PNE doctors and for more to be raised up.

God we need help.

I want to burn my ice packs. Is that possible???? Can I set a blowtorch to my Lyrica? How about I throw away the Valium? I'll give it to the neighbor's smelly cat. Just kidding. I want OUT. I'm done with the PNE club. I'm leaving the lunch table.

Love

Happy Valentine's Day! Another Hallmark holiday... eat some chocolate if you can, tell each other how much you adore one another, make love, and move on....

Right.

It doesn't work that way in the PN'rs life. Love is challenging. For singles, it is a love wished for-- "will I ever find someone to love me like I am?" For couples, it is often without traditional intimacy, thus leading to frustration, anger, longing, depression, hoping, dreaming, WAITING.....

Oh...... WHEN WILL I BE HEALED? Make me whole....

I want to experience love again. We are learning a whole new way to love. It isn't easy. It comes with tremendous frustration, effort, all of the above. It has to come from both sides. There has to be a deliberateness to make it work. This is so foreign.

I have always been a hopeless romantic. I have loved this song ever since my Dad suggested it for J and I's wedding. I've always loved Babs (Barbra Streisand). What a phenomenal instrument God has blessed her with. Enjoy the sappiness of it. And don't give up hope. I am preaching to myself here too.

You are so beautiful

"Awww.... Barbie, you're so pretty. Such thick, brown hair and long eyelashes--- you don't even NEED makeup!!! Naturally pink lips, and you're thin, too! And, where'd you get that sweater, girl?"

And Barbie replies, ever so sweetly:

"Oh. You didn't notice my button? Was it NOT BIG ENOUGH? It's as big as my head for cryin' out loud!! Can't you see it? Yeah, that's right. Me. Beautiful Barbie. With Chronic Pain. HIDDEN Chronic Pain. "

So, you see my point, readers, friends, loved ones. I will strap a megaphone to my face and tell you and the whole world about Pudendal Nerve Entrapment if I haven't already. It's a hidden pain eating away not only at our most intimate, personal areas, but at our self-worth, our identities, our everythings. I am just being REAL here, like my blog originally stated I would. I made a new PNE friend tonight. Praise God for that. No really, seriously. I'm happy I made a new PNE friend. We need to network. I'm finding that there are just too few doctors and too MANY patients that it's up to the majority to make something happen. So, kudos (and I hate that word, but my brain can't come up w/ another one right now) to those PNE people that are spreading the word, being sleuths behind the scenes, demanding answers, all in kindness of course, because bashing someone over the head or throwing yourself at the foot of the podium of the International Pelvic Pain Society meeting just won't do it. Hahaha at A in CA :-) She gets this one. I have to refocus my brain before I'm off to bed. Because getting up in the morning for a PNer just ain't easy. So, I'm going to try to find a verse that sums it up and gives hope to not only me but to you, reader, too.

^{Psalm 37}

³Trust in the LORD, and do good; so shalt thou dwell in the land, and verily thou shalt be fed.

⁴Delight thyself also in the LORD: and he shall give thee the desires of thine heart.

God has never failed me yet. He has never failed me yet. He has never failed me yet. HE HAS NEVER FAILED ME YET.

Flare Up = No fun

I went to PT on Tuesday. It was my fifth session. My second internal exam. She lightly pressed on the sacrospinous ligament on the right side. I think she did this both internally and externally. The Alcock's canal runs right near there. Everything is so close. Anyways, I've been flared now for days since then. Nothing is helping. Constantly sitting on Polar Ice packs. I think I may be close to giving up PT, well at least internal. I can't go down this road again. I declined so fast and was in so much pain with my 4 months of PT before my TG surgery in November. It was too much. I want to go for a walk, get some fresh air, something. But I know that until this flare passes, it will just continue to aggravate my entrapped nerve. I am talking about the right side here. My left side was freed during the TG surgery in November. So now I only have one side entrapped. I guess I am going to end up being a bilateral. I hope the pain goes away. Maybe the scar tissue is so minute that it can die down and go away and not bother me. Pushing on the nerve certainly won't help though. I can't go through it again. I'd rather have the pins and needles than the stabbing feeling in the Alcock's canal. That is (and was, for my left side, previously) the ultimate worst. Feeling like you have a knife in there and just want to pull it out.

J and I are going to travel sometime to the revival in Mobile. I need strengthened in my faith and in the healing power of God. God can do anything. He can remove scar tissue and restore my nerve to health without a surgeon's scalpel. I knew in my heart that I would have to have surgery on my left, but I still haven't received that confirmation yet in my spirit about the right side. Maybe it's too soon to tell (just 13 weeks out today), but still. Week after week of sitting (haha, I mean lying) here with ice "down there" just isn't a quality of life. J and I deserve so much more. We deserve LIFE. How can we make a LIFE while this is going on? That is our challenge. If anyone has some suggestions, I'd be happy to take them.

Thank you.

Yup. That's how I feel today. Ker*Plunk. Tables turned. Right side worse than left. Left side healing? Yes. I trust in that. Right's been hurting a lot lately, just haven't posted it. But I'm posting it tonight. Will I be one of the ones that have to go through another surgery to get rid of this darn scar tissue surrounding my poor nerve? Time to start seeking answers again. Oh, Lord. What do You have for me? What is the purpose in this pain? Faith like an apostle? Martyrdom? Am I dramatic? (YES) I am human.

I want a sibling for A.

What else do I want? I want, I want I want. What do you want, God?

Jeremiah 31:3 (New King James Version)

³ The LORD has appeared of old to me, saying:

“ Yes, I have loved you with an everlasting love;
Therefore with lovingkindness I have drawn you.

Love, me Lord, and take away my anguish. Set me free from this bondage. The ups and downs. This is PNE. Ahhhhhhhh! Someday, someday...... I will beat this. We will beat this!!! I can't give up!! I'm like Rocky......... I may be down for the count, but I'll beat you in the end. (Theme song playing in my head). Are you sick of reading my post? Ok, good. Cause I'm sick of writing it. Please just pray for me tonight. Thank you all.

Too happy not to share

I've been feeling better.

Let me say that again:

I'VE BEEN FEELING BETTER!!!!!

God, please don't let this stop. I am still getting the nerve zaps, you know, those electric shock lovelies that split you in two?? The pain that frozen ice cubes applied against bare skin does not dull? Okay, you get it. I still get them. But, I am doing more. I drove this week. I bought new bedding at Target. Reclined like an old rapper from the 90's in my hooped up Jetta cause I don't want to put pressure or strain on the nerve. That's about the only way I can sit.... either that way, or on a completely hard piano bench at my inlaws. I've been off narcotics for over 2 weeks now. Still on Lyrica 2x a day, Valium 2x a day, and Amitriptyline at night. Oh, and the 'zac (That's Prozac, people) once in the morning. I take a bazillion vitamins: High Potency B-12 complex for nerve health (in drop form, under the tongue), a B complex pill, Vitamin D3 (thanks, Pianogal!), a multivitamin, Ester-C (non-acidic for those IC sufferers out there ), oh and I still take my probiotics, Miralax (although less and less), and docusate sodium (lets face it... I'm too scared to have a difficult #2. My poor nerve needs babied all it can!

Yes, there's a few times this week I've been laid up with some ice. There's never a day I don't ice at night. But I'm noticing now that I get out the ice LATER and LATER in the day. I'm doing Transverse Abdominus exercises out my wazoo. I can't do much else from PT (still causes instant tingling/burning in vulvar area when I squeeze my glutes), but I am trying to be more conscientious about walking without a sway back (like I'm still pregnant). My knees have callouses on them from chasing around after A..... haha. Who cares. It's my baby girl. If I can play with her for a few minutes, my kneecaps can suffer. What's that compared to pudendal pain?

Most importantly, I have been PRAYING and BELIEVING for YOUR HEALING. All of those of you that go to the forums, read my blogs, don't read my blog, whatever. I still call out your name in prayer. I've never been a good "pray-er". God's teaching me. Hallelujah. Who cares how, right? That's what's so good about praying in the Spirit:

Romans 8:26 (New King James Version)

²⁶ Likewise the Spirit also helps in our weaknesses. For we do not know what we should pray for as we ought, but the Spirit Himself makes intercession for us ^[a] with groanings which cannot be uttered.

Yes, I'm a pentecostal, holy-rolling (I've never actually rolled, haha) Christian. But, even those of you who I'm friends with who aren't pentecostal and holy rollin' (again, LOL) still love me, right? And that's okay. You can still love me. You don't have to agree w/ me, but you can still love me, just like I love you. And I will still pray for you. I will still believe.

I am not giving up this PNE fight. Peace.

Awesome! Short yet important news bit about Chronic Pelvic Pain

Proud to say, my surgeon was interviewed. Thank you, Dr. Hibner!!! Thank you!!!

WAAAAHHHHHAT is Pudendal Nerve Entrapment/Pudendal Neuralgia?

What exactly is Pudendal Nerve Entrapment or Pudendal Neuralgia? Since I have been broadcasting this blog to the world, many are asking. I figured I would borrow some info from the sites that helped lead to my diagnosis, TIPNA and PudendalHOPE, and put together a little blurb about what it's all about. If you want to read more about it in medical-ese, you can check out the links to these two awesome websites at the bottom of my page.

Taken directly from http://pudendalhope.info

Anatomy

The pudendal nerve is a sensory, autonomic, and motor nerve that carries signals to and from the genitals, anal area, and urethra. There are slight differences in the nerve branches for each person but typically there are three branches of the nerve on each side of the body; a rectal branch, a perineal branch and a clitoral/penile branch. There is ongoing research into the exact areas innervated by the pudendal nerve. PN occurs when the nerve or one of its branches becomes damaged, inflamed, or entrapped.

Symptoms

The main symptom of pudendal neuropathy is pain in the areas innervated by the pudendal nerve or one of its branches. Possible symptoms include burning, loss of sensation or numbness, increased sensitivity, electric shock or stabbing pain, knife-like or aching pain, feeling of a lump or foreign body, twisting or pinching, abnormal temperature sensations, constipation, pain and straining with bowel movements, straining or burning when urinating, painful intercourse, and sexual dysfunction – including hyperarousal or decreased sensitivity. The pain can be on one or both sides and in any of the areas innervated by the pudendal nerve, depending on which nerve fibers and which nerve branches are affected. The symptoms can start suddenly or develop slowly over time. Often the pain gets worse as the day progresses and is worse with sitting.

Causes

There are numerous possible causes for pudendal neuropathy. Some of the possible causes are an inflammatory or autoimmune illness, frequent infections, tension on the nerve, a nerve entrapment similar to carpel tunnel syndrome, or trauma to the nerve from an accident/fall, exercise, childbirth, prolonged sitting, or surgery. Sometimes there is no apparent explanation and some doctors have theorized that the problem can be hereditary due to a musculoskeletal predisposition. Occasionally the problem originates in the spine or sacral area rather then the peripheral pudendal nerve.

Diagnosis

The diagnosis is usually made based on the patient’s symptoms, history, and exclusion of other illnesses such as infection or tumor. While no test is 100% accurate some of the more commonly used tests are the pudendal nerve motor latency test (PNMLT), electromyography (EMG), diagnostic nerve blocks, and magnetic resonance neurography (MRN). Pudendal neuropathy can occur in men or women although about 2/3 of patients are women. It is considered rare and many doctors are just now becoming aware of this illness. Sometimes it is referred to as cyclist’s syndrome, pudendal canal syndrome, or alcock’s syndrome. Pudendal neuropathy can have similar symptoms to another disease or be misdiagnosed as another disease. Those most often associated with or confused with PN are chronic non-bacterial prostatitis, levator ani syndrome, proctalgia fugax, interstitial cystitis, vulvodynia, vestibulitis, chronic pelvic pain syndrome, hemorrhoids, piriformis syndrome, coccydynia, ischial bursitis, idiopathic (of unknown cause) orchialgia, or idiopathic prostadynia. Many PN patients have been to numerous doctors and suffered for many years before finding a diagnosis. Sadly, often PN patients are told their problem is psychological.

Treatment

There are many treatment options depending on the cause of the neuropathy. The most common treatment options include pelvic floor physical therapy to relax the overly tense pelvic floor muscles, medications, pudendal nerve blocks, and if an entrapment is suspected pudendal nerve decompression surgery. Other available options are pelvic floor Botox, intrathecal pain pump, and neurostimulation. The administrators of this website are volunteers who are veterans of pudendal neuropathy.

For all of us PNE sufferers...

God bless as you read this and be encouraged. I am telling myself this too as the nerve zaps and strain are hurting my flesh.

DaySpring E-Cards

THIS IS REALITY FOR US... some words from my fellow PNErs

pianogal in CA (age 34) writes:

feel dispassionate about details of my life bc can't live them fully.

overwhelmed w roads to try.

house. decor. body. image. look. husband. sex blech. friends. music. career. news. finances.

even God sometimes I hate to say.

it's like what can i do. why care.

parts of me care but not enough to solve the giant mess.

obsession w body wanting healing of body so all elements of my broken life can b healed too.

everything is chipped torn dusty broken in a room off to the side... till i can come back to life.

Nick in MN (age 31) writes:

Dear Friends (or acquiantances if you prefer),

I would like to share a bit of what was on my mind today about who I am. Who am I anyway? Is it my identity? I am a husband, son, brother, friend, musician, goof ball, video game addict, insurance underwriter, owned by a cat, and many other things that people tend to be. I have become a PN sufferer but that does not change the other things, PN can't have them! But these are only part of me. Is it how I feel? I'm only 31 but I've had a chance to feel plenty of the things that come with being human. Happiness, joy, sadness, fear, depression, desire, anger, pleasure, downright weirdness, etc., etc., etc. I've been introduced to pain that I didn't think could exist outside of the pits of hell, and have come to find out it could be worse!!! I believe it is always okay to feel the way you do, you don't need to justify it to anyone. It could be argued that these sensations and emotions make up the whole of our existence. But that's not all either. My brain was grinding on this for quite a while and I finally came to the conclusion that I am just me. Wherever I go, whatever I'm doing, however I feel, I am still me and no amount of pain or any diagnosis will ever take that away. God has given me this life; past, present, and future and nothing will ever change that. Now that that's out of my system on to the toast: Here's to all who are struggling with pain right now may you find relief quickly may loved ones surround and support you may the road ahead bring you kindness and compassion may God lead you to healing and peace when you are down may hands reach out to lift you up when you are strong may you reach out to help others who are in need and may you always remember who you are Cheers! *clink*

Nick

S in CA writes:

MY PAIN

My relentless companion

ever there

ever waiting

My pain

Now louder — did it hear its name?

Drumming into me with each footfall

on the pavement

I stop to rest, it smiles quietly.

It lies in wait for me to grow weary

and then it is THERE

LOUD

ANGRY

BURNING a hole in my deepest secret flesh

OW – go away

what do you want from me

what did I do

why do you haunt me

Leave me

Let me be

Let me live

Let me work

Let me love

------------------------------

Pain Rising

The pain got louder. She could feel it growing, tendrils twisting sharply in the left side of her pelvis. How much longer would it be? Would she be able to last?

She shifted in her seat, trying to ease the burning. She didn’t want to take another pain pill. What was it about tapping, distracting the brain? She tapped the side of her wrist and the fleshy valley between her thumb and forefinger, trying to remember the pattern.

Nothing. Just the patient, insistent, throbbing flame.

She sighed. Nothing worked… Not the doctors, the expensive tests and treatments, not the healers, the meditation, nothing. Every time she researched new treatment options and approached a new specialist, she was so hopeful. All the holistic, touchy-feely stuff was stupid, a waste of time and money. Am I crazy, she thought? Did I manufacture this? On some subconscious level, am I CHOOSING pain? Why is this happening to me?

Oh shut up.

Get back to work. Quit feeling sorry for yourself. Are you going to let this screw up your whole life?

I wish I was dead. No, correct that. I wish I had cancer and could go through the chemo and have my breasts cut off or whatever and then get better. Then I could have a life. Or even if I died at least it would be over.

It was the pain, the never-ending, 24-7 pain that was driving her insane. She could empathize with suiciders – it seemed seductive suddenly – just a few handfuls of her pain medication and drifting off to sleep. That would be easier and less messy than the other images she had – of taking a sharp knife and cutting deep, into her urethra and beyond, where the pain screamed. It woke her from sleep, talked to her as she showered, bathed, dressed, tried to work, tried to live, tried to love. SCREAMING, I HURT! I BURN! I BLEED! I TEAR! I HATE YOU! I WANT TO KILL YOU! SCREAM SCREAM SCREAM…. Until she felt like screaming back and cutting into the malicious flesh.

Instead she cried, great racking sobs, took the prescribed narcotics, drew the hottest bath she could, stepped in and waited for the screaming to subside, like a voice that has worn itself to a hoarse whisper.

She lay motionless now in the blessed quiet, willing herself to stay still even as the water chilled. But no use. Within an hour the scream would be loud enough to interrupt her life again, make her put aside whatever she was doing to repeat the ritual. Pain pills, hot bath, check out.

Wife of Mitch in MN (age 47) writes:

Thoughts of a Tortured Mind

How do you cope with watching the person you love from your soul suffer day in and day out? How do you leave for work every day carrying with you the fear that the pain will win while you’re gone? I find myself trying to make plans on how to handle things when he’s gone, trying to prepare myself for what feels some days to be the inevitable. My mother became a widow before her 47th birthday. I’m worried that I will do so sooner than that. How are you supposed to stand by while he writhes in pain with tears streaming down his face, knowing that there is nothing you can do? How do you choose between your selfish wishes to achieve your “happily ever after” and his wish to be released from the pain that never ends? When he talks about suicide, is it wrong for you to be torn between screaming, “No, you can’t do that to me!” and breaking into tears and saying, “I understand. How can I help?” I need him, but I need him to be whole and healthy and happy. My happiness would never be complete if it came at the expense of his well-being. How do you deal with his exhaustion and short-temperedness when you don’t even know how to deal with your own? How do you sleep at night knowing that he can’t sleep because of the pain and the panic attacks? Where do you turn to ease your own pain, when you’re the only person to be there for him? What will he do while you’re out pampering yourself? Where would I turn, anyway? And, who will take care of him? He’s got family, but they don’t even try to understand, don’t even act like they care. They’re too absorbed in their own lives to even realize that he’s in trouble. I hate them for their indifference, for not being there for him. God forbid, but if he did choose to take his own life, I would sever contact with them. They will hate me, because I will not bury him. I don’t need a rock in the ground to remember him, or to visit him. That’s their issue. Maybe I would have him cremated and spread his ashes in the sculpture gardens. I have wrestled with the consequences of suicide before. Does that automatically condemn you to hell? Does a loving God have the capacity to understand that the pain just became too much? I love him. I fear for him. I want to hold on to him, but I want to release him to relief. It’s a battle, and I can’t win. It’s not my battle. I have my own demons to wrestle, but they pale in comparison to his. My demons will go away when he finally finds relief. I pray for his health. I pray for his mind. I pray for his soul. I am useless to do much more as I move through every day watching the person I love from my soul suffer day in and day out. I leave for work carrying with me the fear that the pain will win while I am gone. God, please be with him now and always.