The problem with health care

My grandmother is very sick. She is in a local community hospital where she is clearly getting sub-par care. Yes, she has a lot of needs. She has had stage 4 terminal lung cancer first diagnosed in June 2009 and has way outlived her life expectancy. She's very sick now. High blood pressure off the charts and no one knows why. The family doctor doesn't talk to the neurologist, who doesn't talk to the surgeon, who doesn't talk to the cardiologist, who forgets to order the meds, that cause her to code and no one's "available" cause it's the New Years weekend coming up. Meanwhile, my poor grandmother, who has a tube down her throat, is thrashing about because her hands are literally tied because they don't want her to pull out the tube, and NOT ONE NURSE seems to care that the poor woman is clearly, visibly in misery and needs some attention. So my mother, who happens to be a nurse, finally asks "where's the pain medication, she needs some pain medication!!" and the surgeon says, "oh, I forgot to order it." 2mls of morphine later, and grandma's calmed down. Ugh. Breaks my heart.

Do I need to thrash and scream and beg and plead for people to realize I'm in pain? Heck, if someone isn't even going to listen to a beeping, alarming, high blood pressure monitor and a visibly sick cancer patient and give her credit where credit is due, who's going to think I'm in pain? "OH BUT YOU LOOK GOOD!" "YOU HAVE GOOD COLOR!" Oh, please. If I were an artist, I would paint you my pain. If I were a masochist, I would CAUSE you my pain.

No, not really. I love you. I love people. I have a heart and don't want others to be in pain. But, this is the struggle of one with chronic pain: the paradigm of wanting others to know and experience your pain for a second JUST SO THEY'D KNOW, or wanting to prove your pain somehow so they'd show you more compassion. What do I want? What do I need? I don't know.

There's a little girl on the PNE forums who is struggling with neuropathic itch. She is 7 years old. We have got to get the word out. This poor ANGEL, and her poor mother, SUFFERS!!! Ahhhh! Why, why, why all this suffering, Lord? This little girl is so embarrassed at her problem, she is 7 years old for gosh sakes, she is a baby, she is supposed to be playing nonsensically with her Barbies and her My Little Ponies and her Zhu Zhu Pets or whatever they are called. Not ashamed of her "privates" and her private problem. Poor sweetheart. Ugh, my heart just breaks. Please pray for her. The Lord knows her name.

I know doctors aren't Gods. They are far from it. Some, however, will go the extra mile to show compassion, care, concern, and they will dig deep, on a patient's behalf. I know this because I've experienced both sides of the spectrum. I've had doctors with MDs, PhDs, whatever "Ds" tell me to go drink two glasses of wine and use some lidocaine. Can you have possibly told that to my entrapped nerve, stuck like glue to scar tissue? That wine sure smoothed it out, baby. Do I sound angry? Yes, I guess I am.

My left side is healing. It's freed. So, why can't I just let it be?

It's an okay day

They say with PNE recovery, don't go day to day. Go month to month. Hmmmm. I think that's hard to do. I'm the analytical type. I go day to day. You may not get a daily update. Maybe I'm just excited because now I have a blog and I can type away my thoughts. So...

Today, Shannin came over with her daughter, Veah. A was at school so we had some time to just relax. Veah played with A's toys and I wished A was there to play with her. I painted Veah's nails... each one a different color. I kneeled down (not laying back on my butt, but just "up" on my knees since I can't bend my hip >90 degrees). She loved it. Shannin brought the best scones. I had half a blackberry scone. My belly still hurt a little from the remnants of the stomach flu virus. I think I'm over that now, praise God.

To my pain, well, I hate you. You're the one thing I'm allowed to hate, aside from Satan because you come FROM Satan. I'm icing you away right now. My sacrum still hurts. Did pretty well throughout the day. Took a little walk with J. Was nice. It was sunny out. Left side did NOT hurt during walk, whereas Right side did. We have a call into Hibner's office as to what my lifting restrictions are since they didn't give me any instructions. I called and made an appointment at UPMC Mercy Pain Clinic for next week. Without insurance, Lyrica costs $189 a month. Time to get yet ANOTHER prior auth. Good thing we have all the dumb templates already. Praise God UPMC covered my surgeries. What choice did they have? I needed it. I want more scones.

Did anyone watch "For Every Mountain?" What an ANOINTED song! I cried myself to sleep last night. God. For every mountain You've brought me over, for EVERY trial You've seen me through... for every blessing.... HALLELUJAH.... for this I give You praise!!! I was humbled. How can I stop believing that God won't bring me past this mountain?? He brought me to it. He took me through it; He still is.

Psalm 18: He rescueth me from mine enemies (PNE). Yeah, thou liftest me up above them that rise up against me (nerve zaps, electric shocks, stabs); Thou deliverest me from the violent man. Therefore, I will give THANKS unto thee, O God, among the nations (the purpose of the blog), and will sing PRAISES unto THY NAME! (O, Lord, get me back to the PGC soon so I can open up my mouth for you AGAIN!)

That's why I praise You...

I'm just a mess tonight. I feel so confused about this path God is leading me on. I don't want to figure it out. I just want to crawl in a hole. But, I have my baby!!! God, what to do! I bent over to pick up some of her toys and my sacrum is killing me now! I hope I didn't ruin my ligament repair. I'm so worried. Time to read scripture... my only hope.

Not another pill

Ho, Ho, Ho.

Who's sick of these holiday car commercials? My least favorite of all is the Hyundai one... every time that comes on I always comment that I'd like to take a gun and well... shoot the TV. Can't stand those crazy looking hippies. If life is that rosy, then take me to that place! Ok. I digress.

So, I had the 24 hour stomach flu. Not so good for my pudendal nerve healing. The polar ice pack and heating pad(s) are my best friends today. They've been my best friends for a long time. I'd like to drop them pretty soon, you know, kick them off the lunch table or pick them last for the team? I'm sick of it. I want to go back to SINGING, studying music, working on my parenting skills, potty training my daughter, playing with my daughter, getting OFF this COUCH, ugh, doing something!

Don't you just wish you could call some magical number and have them write you a script for an immediate cure? You know, like Pepto Bismol for the soul or something? Instead of flying all over the country, fighting endlessly with insurance companies, trying to PROVE you have a problem (a REAL, LIVE, PHYSICAL PROBLEM), having MRI's at special hospitals, getting your butt all cut up.... etc. etc.

When I wake up in the morning, I want my most difficult decision to be what type of K-cup I pick for my Keurig. I want to have plans that include getting out of the house, driving, playing with my daughter, and NOT HAVING THE EVIL PAIN LINGERING IN THE BACKGROUND, nagging me like a fly in my ear.

I never understood before. Never, never, never. Just lived life like y'all do who don't have pain. Yes, I'm jealous of you. I'm honest. I'm jealous. I hate pain. Seriously, to think 3 1/2 years ago, I was writing songs on a hard piano bench, hardly ever taking naps, running with my dog, having sex without pain (whoa! you might say... TMI... but hardly for the PNE sufferer), going shopping, eating with friends, dreaming about saving money for the next vacation.... aaaahhhhh..... real life. REAL LIFE.

Is this my REAL LIFE? Well, this is real life, NOW. I will not ever accept that it will be my life. This will change. This will improve. I will win.

I am almost 8 weeks post op from left sided transgluteal pudendal nerve decompression. I start PT next week. What about my right side? Cross talk? Oh, just think POSITIVE THOUGHTS, they all say.

You live through it, then tell me that.

Ok, my daughter just crawled up on my chest and kissed me. See, I am still alive.

Long overdue...

Starting a blog about my journey with Pudendal Nerve Entrapment is long overdue. I simply have not had the strength nor the energy to deal with it, although it has always been in my heart and has been a true desire of mine.

The thing about Pudendal Nerve Entrapment is that it is so misunderstood. It is misunderstood by the medical profession, by the patient, by the patient's loved ones, by everyone.

Pudendal means SHAME. But.... I am here to make a start. I am here to take the SHAME out of Pudendal Nerve Entrapment. I am a 30 year old woman. I am a wife and a mother, an accomplished vocalist with two degrees in vocal performance. I am MORE than this disease.

And so are YOU.