Supporting Artists for a Good Cause

Wanted to share this with everyone that reads my blog.  While it doesn't have to do directly with PNE, my friend Victor was one of the students attending the American Institute of Musical Studies that shared his Bible with me and some materials/cds from his church in Baltimore, MD, when I gave my life to the Lord in Graz, Austria in 2004.  Good luck to you, Victor and Mikael!





Kickstarter Link - Supporting Victor and Mikael - Stravinsky's "Rite of Spring"

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!

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.

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.

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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.

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.