Saturday, January 29, 2011

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.


Thursday, January 27, 2011

Awesome! Short yet important news bit about Chronic Pelvic Pain

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

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Sunday, January 23, 2011

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

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.
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.
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.
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.
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.

Saturday, January 22, 2011

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

Friday, January 21, 2011

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.


Wednesday, January 19, 2011

Lean HARD!

More great encouragement sent from another friend (a male) suffering from PNE.

Cast your burden upon the Lord, and he shall sustain you." Psalm 55:22

It is by an act of simple, prayerful faith we transfer our cares and anxieties, our sorrows and needs, to the Lord. Jesus invites you come and lean upon Him, and to lean with all your might upon that arm that balances the universe, and upon that bosom that bled for you upon the soldier's spear! But you doubtingly ask, "Is the Lord able to do this thing for me ?" And thus, while you are debating a matter about which there is not the shadow of a shade of doubt, the burden is crushing your gentle spirit to the dust. And all the while Jesus stands at your side and lovingly says, "Cast your burden upon Me and I will sustain you. I am God Almighty. I bore the load of your sin and condemnation up the steep of Calvary, and the same power of omnipotence, and the same strength of love that bore it all for you then, is prepared to bear your need and sorrow now. Roll it all upon Me! Child of My love! Lean hard! Let Me feel the pressure of your care. I know your burden, child! I shaped it—I poised it in My own hand and made no proportion of its weight to your unaided strength. For even as I laid it on, I said I shall be near, and while she leans on Me, this burden shall be Mine, not hers. So shall I keep My child within the encircling arms of My own love. Here lay it down! Do not fear to impose it on a shoulder which upholds the government of worlds! Yet closer come! You are not near enough! I would embrace your burden, so I might feel My child reposing on My breast. You love Me! I know it. Doubt not, then. But, loving me, lean hard!"

Tuesday, January 18, 2011

Great Encouragement from fellow PNEr!

My friend, A, who is on the other side of the country and who is a young mom like myself who is fighting PNE, sent me a link to a great devotional today. Everything reminds me of sung scripture, so of course I had a song for it!

Here is the link to the devotional:


And here is my video for it!!!









Basically, what I took away from it was this:

Dear child of God, are you with a promise today, regarding your life, your future, your family and your ministry. You just saw it fall down from heaven, but you do not see anything happening yet. God wants to remind you that His words will not return to him empty, it will accomplish the purpose for which it was sent. You might not see it right now. Its working out its purpose…first of all, God is training you, preparing others, changing your environment, creating new opportunities, changing the laws of the country…you never know what God has in mind. If God has promised you a ministry so that you will be a channel to bring forth salvation to the ends of the earth, He will do so. Every encouraging letter you write, every exhortation you say, every devotion you post, every message you speak will not go in vain. You might not see the people you are influencing or the changes you are making in their lives through Jesus Christ, but it will perform its purpose and one day you will see many saved across the world, through you. Let me encourage you with this verse from the bible “For the revelation awaits an appointed time; it speaks of the end and will not prove false. Though it linger, wait for it; it will certainly come and will not delay. ” (Habakkuk 2:3)

So, what I am doing now, going through the pain, the hell, the misery, the tears, the... the... EVERYTHING..... will accomplish the purpose for which it was sent (Isaiah 55:11). I liked the part about how "God is training you, preparing others, changing your environment, creating new opportunities...."

Wow. While the pain still flourishes in the same way that last night's post depicted in its pictures, I guess my focus has shifted a bit for tonight. And I even got to rock A to bed and sing her "Nobody Knows De Trouble I've Seen." Glory! Hallelujah.

Monday, January 17, 2011

The picture(s) of PNE pain






Tonight, I would say all of these pictures fit me in some way or another. Although, I haven't cried since this morning. I almost cried while writing texts to my friend Sharon about how J has to put A to sleep instead of me rocking her and singing to her like I used to. However, this morning, I actually cried while petting the dog. And mind you, I don't like the dog too much. This shows how far off the deep end I've really come. I said to the dog, with tears in my eyes, "remember when we used to run together, and I'd take you to the dog park, and we'd go lay down in the grass in the park when you were a puppy, when you'd chase me around and around?"

God, how I miss being pain-free! Please, people: don't EVER take your health for granted!! Mine was snatched away at what was supposed to be one of the best times of my life (pregnancy and birth and growth of our only child, A.) Why!? Why!!!!!??

I'm lamenting, I know. Maybe I should eat the other half of the Caramel filled Fat Witch brownie I ordered last week. Ugh, or not...

I asked J today, "will I ever get better?" and he said "I hope so." Wrong answer. The answer was supposed to be "yes." But, I can't blame him for being scared either.

Faith. Faith. Faith. Faith. Faith. Faith. FAITH.

Thursday, January 13, 2011

Gaaaaaaaaaaaah!


I'm so sick of these attacks from the enemy! Wait....... I need to first give glory to God before my complaints start...... I always get things backwards. I give glory to God today because I have had less nerve pain today than yesterday. I didn't get to go on a walk but I did stencil A's potty stool (and I am NOT crafty). I'm just going to post my prayer requests on here:
  • Peace in body, no pain, and clear direction for my grandmother, Irene, who is in ICU severely ill for over a month now (terminal cancer, now getting artificial feedings, is incoherent, etc.)
  • Peace and rest for my grandfather, Henry, who is 86 1/2 years old and is standing by his wife every day in the hospital as she lays there unresponsive
  • Peace, rest, and clear direction for my mother, Karen, who is stressed to the max and needs rest, restoration, and supernatural physical strength and power
  • Divine and miraculous healing in my body, miraculous restoration of my injured nerve that was freed surgically, and release of all pelvic floor muscle spasms and divine healing of the trapped nerve on the right side
  • Direction for my friend, A, in CA for which way she should take with her PNE, whether it be to France or to AZ
  • Healing for all those on the PNE forums of body, mind, and spirit
  • Restoration of marriages and relationships broken, bruised and tainted from this horrible disease
  • God to raise up more trained surgeons who will operate on the pudendal nerve
This is us. This is the pudendal nerve patient.

Wednesday, January 12, 2011

Been down for the count

Sorry all. Haven't blogged in a few days because I've had some side effects of both having the Fentanyl patch and going off of it (which I did in 1.5 days). I'm still flaring. This disease sucks. I hate it I HATE IT I HATE IT I HATE IT. I curse YOU PNE in Jesus' name!!! THE LORD HAS GIVEN US THIS AUTHORITY IN HIS NAME. It all comes down to faith. I hate PNE. I hate what it has done to my life, my marriage, my everything. But, by FAITH, I will overcome the evil one.
   
10 Finally, my brethren, be strong in the Lord and in the power of His might. 11 Put on the whole armor of God, that you may be able to stand against the wiles of the devil. 12 For we do not wrestle against flesh and blood, but against principalities, against powers, against the rulers of the darkness of this age, against spiritual hosts of wickedness in the heavenly places. 13 Therefore take up the whole armor of God, that you may be able to withstand in the evil day, and having done all, to stand.
14 Stand therefore, having girded your waist with truth, having put on the breastplate of righteousness, 15 and having shod your feet with the preparation of the gospel of peace; 16 above all, taking the shield of faith with which you will be able to quench all the fiery darts of the wicked one. 17 And take the helmet of salvation, and the sword of the Spirit, which is the word of God; 18 praying always with all prayer and supplication in the Spirit, being watchful to this end with all perseverance and supplication for all the saints— (Ephesians 6:10-18, New King James Version)

Saturday, January 8, 2011

Study Gauges Best Treatments for Chronic Pelvic Pain in Men

I was VERY excited to hear that PNE was mentioned in this recent article. Awesome, awesome, awesome!!!!

PayPal Donations now being accepted

I WANT TO GET THE WORD OUT!
So, in order to accomplish this, I am asking for your donations. It doesn't have to be a lot. Well, maybe a little bit more than 50 cents. But, I have a vision, while I lay here on the couch recovering AND FOR WHEN I'M BETTER. It's not going to stop then. My vision is to EDUCATE medical professionals about Pudendal Nerve Entrapment. I want to make packets, talk to doctors, nurses, WHOMEVER will listen about Pudendal Nerve Entrapment! I have contacts in the medical world.... not getting into that now. Other than those contacts, when I lived in CA, I worked for a Continuing Medical Education accreditation agency for Physicians, and we were constantly trying to come up with new and innovative topics for doctors to become educated on. Short of going door to door, I'm going to spread the word. So, I figured out how to put a PayPal logo on this website, and there is a DONATE button in the bottom right of this page. I donated to it myself to get it started and have some ammo in the account. This money is NOT going to me. I don't want or need money. What I want and need is to get the word out on PNE. This will help get it done. I welcome anyone who is willing to help, with ideas, or anything. God bless.

Friday, January 7, 2011

Bad Day, Good Day, Bad, Bad, Good

While watching The Bay of the Holy Spirit Revival tonight, I was really overcome with emotion. Emotion, confusion, frustration, desire, grief, anger, remembrance.... everything. Nathan really preaches the Word, clearly, truly, and how Jesus did. God bless Him for that. I am struggling with God's purpose for my suffering and the suffering of my husband and family. I am a singer... I am a worshiper, I am anointed to sing of God's mercies, graces, praise, and greatness! How can I do that from the couch, or the bed, with ice packs and heating pads, not being able to sit, with Fentanyl patches, Valium, drugs I don't want to take, doctors I don't want to see....

I want to go to church. I want to be there, in the presence of God. Yes I know, I can have the presence of God right here in my bedroom. But, there is something about corporal worship that is so meaningful. They are doing a song right now on the revival that I used to do at Calvary Faith. I miss this part of my life.

I guess my prayer for tonight really is, that if my healing can't be today, that someone's can, and that they will TESTIFY loudly about it, to the Glory of God. That's just what I kept feeling in my spirit as Nathan kept calling people to the stage for prayer. If I can't be healed today, well, someone can, because Jesus never stops even when we do. Good night.

Wednesday, January 5, 2011

A Lovely Day!

So for Christmas, my lovely NJ native neighbor, Lauren, bought me a sampler pack of the most decadent creation since the nectar of the gods. They are, put simply, the bomb. Yes, I said THE BOMB. They are Fat Witch Brownies. Surprisingly enough, they sold this yummy mix at Off 5th Saks Fifth Avenue, and I bought her some of their Blonde Brownie mix.



She made the Blondies today, and I of course invited myself over as I usually do, and they were INCREDIBLE. I recommend to ANYONE that is a sweets lover, get this stuff. Or, maybe not or else you may get fat, as I would have if I didn't hurry and go brush my teeth to get the delicious buttery chocolatey taste out of my mouth. Mmmmmmmm........ the highlight of my day. Plus, A didn't really throw that many tantrums. And.... my gramma had a better day, and I went to Wal Mart with Shannin! And, had SCONES!!! GOSH, A GREAT DAY! Oh, I didn't talk about my pain. I self medicated with too much sugar. :-)

My husband just asked me if I did my PT exercises today yet.... all but the dreaded transverse abdominus one. That one is hard. It's like you have to pull your belly button in by a pretend string to your back. I'm not making any sense, I know.

I sound perky today. 8.5 weeks post op from TG surgery. Praying it only gets better. My goal is to sit and drive by the end of January. And re-join the Pittsburgh Gospel Choir. ASAP.

It's time to get honest and back to the point of the blog, which should not be blonde brownies. Okay, time for the Pudendal Neuralgia lesson of the day: if you are having burning while urination, your nerve may be flared. This does not feel like the burning of a UTI... it's almost like your pee feels hot as it comes out. This happens randomly to me. Ahhh, the joy of having a stripped bare nerve that needs to regenerate. Better than having a stuck like glue nerve in the middle of cemented scar tissue. Thanks, Hibby Hibner, for taking care of that! :-)

Tuesday, January 4, 2011


The Revival starts again this week! I can't wait to watch it on God TV. For those of you that don't have God TV, you can watch it streaming live on:

http://www.bayoftheholyspiritrevival.com

On God TV, Thursday night at 830pm. I really would like to go to Mobile, AL and be in God's presence. I believe in miracles and I know that when the fire of God falls, miracles take place. My husband was fortunate enough to witness the miracles of the Brownsville Revival in Pensacola, FL in 1995 and he said it was life-changing. Drug addicts, prostitutes, witches, everyone coming to the Lord. The Bay revival has been characterised more so by healings but salvations are happening too.

God can heal your PNE!!! HE CAN ALSO USE MODERN MEDICINE! Seek Him for the answer. That's what I'm trying to do regarding each and every day, and regarding my right side. Sometimes it's really tough to push through. My PNE friend, Linda, is right: when the pain is so great, you can't think about anything else. I have to get this pain down. Pain Clinic -- T Minus 48 hours or so.

When I am weak, He is made strong

Well, I am weak. Literally, physically. I had my first Physical Therapy appointment today with a lady who I think will work out just great for my rehabilitation. Praise God for that. I guess no one really gets strong laying around 60% of the day on one's back. I've been sick for a while thought so I can't really expect myself to have some superior core strength or pelvic stability. At least she didn't tell me one leg was ten inches shorter than the other. Again, Praise God for that. He he.

I posted my detailed PT report on the forums. I don't feel like posting it here. I didn't take as much pills today. That was a good thing. I guess I didn't need them. Yeah! Well, now I do. Just took the evening ones. Laying in bed w/ my BFF the Polar Ice packs (duo). J brings up the other one before bed. He's got the routine down pat now.

I feel like w/ this illness, you need a personal maid. I mean, there's so much CRAP you need all the time --- pillows, ice packs, heating pads, drugs, water, blankets, computers, computer cords, cell phones, cell phone chargers, little pillows, food, side tables, rinse, repeat. Gets old real fast. Just like my blog entry tonight so goodnight.

Monday, January 3, 2011

Photobucket

Sandy came over this morning. It is a sunny day and so I said, "let's go to Target, I haven't been there in about 4 months." We were taking our time, she pushing the cart, me throwing stuff in for A as always (new My Little Pony doll... I have to make this a reward somehow and not just a gift for her) and I came across this book that you see pictured above. It was written by a mom suffering from cancer to her daughter. I just broke down in the middle of good ol' Target. Right near the toothpaste aisle, where J and I met for our second date (our first kiss was in the Target parking lot.) Anyways, in it, I crossed out the word "cancer" and put "PNE". I wanted to share it with everyone. The illustrations help get the point across, but the words are poignant enough.

When I tell you I have PNE, I will be sad. I will be sad because I am sick, but I will be happy because it is not a sickness that you can catch from me, and so you can still kiss me and hug me and love me.

And you will light up my whole room with your big smile when I am resting. Then I will remember the first time you smiled.

Though you were only weeks old, I knew that I would never love anyone in the whole world more than I loved you, that day that you first smiled.

Sometimes I will feel scared, because I have to go to the doctor a lot. But I will remember the times when you were scared, times when you had a nightmare and came into my room to sleep with me. Your skin was as soft as a butterfly's wing, and you curled against me and we felt safe.

And I will be happy because you can still cocoon with me in my mommy bed and make me feel sweet and quiet.

For a while I will have to take medicine that makes me feel bad. I will look different.

But I will laugh when I remember your own sweet little baby head, how round and bald it was, and how warm it was on my lips when I kissed it every day.

I will remember how the fuzzy parts grew silky on the top, sticking straight up like little feathers, and how you laughed when I blew raspberries on your round baby belly.

There will be some days when I don't feel good, and then I will think of all the times I took care of you when you felt sick, and how I brought Popsicles for your sore throat and warm soup with crackers to fill your tummy.

I will be happy when you help me to feel better -- when you bring me tea with honey and you sit with me and tell me stories of your day.

When I am getting better, I will often be tired. Then I will think of how you slept so soundly every time you rode in your baby seat in the back of the car.

I will remember your still, soft face sleeping as you curled like a roly-poly bug in your clean white crib breathing in and out, in and out, quiet as the moon. I will dream sweet dreams when I remember these times.

Sometimes I will be sad that I am sick, but then I will think of how we have laughed and laughed at our own private jokes, and I will remember where to tickle you, and how you loved it when I played this-little-piggy games with your toes. And then I won't be sad anymore.

And then I will be well. And I will think of all the happiest times that we have had, like birthday parties and swimming and hide-and-go-seek,

and I will think of all the happy times we are going to have together tomorrow,

and the day after that, and the day after that. And we will look back on this time and remember that love and kindness really are the best medicine.


Sunday, January 2, 2011

Christ... in me??

Wow. For Christmas, my new friend Shirley bought me a daily devotional entitled "Pursuit of His Presence" by Kenneth and Gloria Copeland. I am making it my resolution to do a daily devotional that includes what chapters/verses to read and study daily. I was always such a good student in school, so this is my "homework." I am always amazed by this thought... and this TRUTH.... that when we ask Jesus into our hearts, He then dwells inside of us (His Spirit). So, Christ really IS in me! The devotional today talked about Colossians 1:27, which says "Christ, the Anointed One and His Anointing, is in me. He is my hope and expectation of glory." I feel unworthy to have Christ living in me. But I guess that's what makes me a sinner, saved by grace. He humbles me.

Music always comes to mind when studying the Word in any capacity. There is a song that was always in worship at Water of Life, our old church in Fontana, CA, and it is entitled "Everything" by Tim Hughes.



On another note, today, I visited my grandma in the hospital. Took my ice packs and shoved them where they needed shoved, and headed with J and A along sunny back roads. Got on the elevator, stepped out on floor 3, ICU. I WAS SHOCKED. My grandmother was like a little baby. Completely helpless. And in pain. To see that on her face, and the struggle because she couldn't communicate or string together thoughts, actions, words, or movements, was too much to bear. They brought her tray and she stuck her hand in the cheesecake with slow, deliberate movements like a young infant would. We took it away and I started to feed her some chicken soup, but it wasn't like a hungry infant would take it; it was more like WORK to feed her. It's almost as thought her poor, tired brain could not understand how to open her mouth, and all the while, her bruised hands grasped aimlessly for other things on the tray in what seemed like slow motion. I saw the foley catheter bag and it reminded me of the pain I had post-surgery when I had that foley and dragged it around Linda's house with that long, painful tube for an entire week, then flying home from AZ with it nonetheless. I am tearing up just thinking of her. A looked at her with a very confused and almost scared look, to see all those tubes up great gramma's nose, and her sitting there without her hair, skinny as a rail, with so many tubes and machines. We tried to tell her that this is where people go when they are sick and need care, just like Mommy needed care when she had her surgery and was sick and needed extra care. It was hard to leave. I laid my hand on her head after they got her back into bed and just prayed in the spirit over her. I felt the presence of two angels in that room, on each side of her, and I'm not sure if I felt their presence there to guard and protect her or that they were there waiting to take her home. Home to the Lord. I don't know, but that's what I felt in my spirit. Two loving, kind, angels.

Pain. Oh, how it breaks us!! I want to get back into the ministry. I miss it so much. My ministry is the PGC right now. I hate this pain. I want it gone so I can minister my gifts to others in need.

I start PT this Tuesday. I am so exhausted from laying around so much in bed or the couch, just muscle atrophy I guess. Little things wear me out, even with all the vitamins and my appetite, which is normal. I am also going to a pain clinic on Thursday in the city.

As I start this year, I do not know what it holds. All I know and the only hope I have is that my left side has had everything done to it that it can. It's up to God to do the rest. And as for my right... it is again in God's hands. I just need to trust Him completely. That is my biggest challenge... letting go of myself and trusting Him completely.