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