Happy New Year ! Hope-in-motion !

Happy New Year to all ! Lord grant us strengh to continue to keep Hope-in-motion as we continue to strive to live with our illnesses and pain. May there be a cure soon for all neurological disorders/diseases.

Your friend, advocate and fellow patient/sufferer,
with Hope,
David Hines

IVIg infusion for CIDP Peripheral Neuropathy

This is me getting my IVIg infusion. It is just a short clip. The actual treatment takes about 2-3 hours. It is treatment for CIDP in an effort to slow down the progression of the disease. It is done through Crescent Health Care in home nurse.

Casting Crowns Lifesong

Lifesong Live

Advocate in Training

I'm a advocate in training but I didn't know my training would be so over bearing. Not that I am complaining. Not at all. I will be 49 years old next month and I will be in by 3rd year with peripheral neuropathy-CIDP. I've come along way and I still want to learn and help in the search for a cure. I was thinking I would not see a cure in my lifetime but I've come full circle and I must believe that a cure will be found soon. We need to work together and beat PN.

As you all know I get sidetracked with my blog and I get off message. But my heart (my hands and feet)are in the right direction. I've come in contact with a number of advocate and lobbying groups that want better healthcare for us and more research which means more dollars from Washington, DC.

Please keep up the hope and lets keep hope in motion.

David Hines
www.neuropathyaction.org
www.neuropathy.org
www.plasmaalliance.org

My favorite news cast and anchor Brit Hume at Fox News

Neil Diamond singing Cherry Cherry 2008 World Tour

JESUS CHRIST

"THE LIFE OF JESUS CHRIST IS A MESSAGE OF HOPE, A MESSAGE OF MERCY, A MESSAGE OF LIFE IN A DARK WORLD".

-Max Lucado

GOD IS IN CONTROL

"SOMETIMES STORMS OF LIFE COME TO TEACH US THAT GOD IS IN CONTROL, THAT WE MUST LEAN ON HIM AND LEARN TO BE THANKFUL FOR THE RICHNESS OF HIS BLESSINGS TO US"

-Max Lucado

Merry Christmas !!!

Merry Christmas to everyone! To my friends and my family, I Love You all very much~

Neil Young singing Heart of Gold

I was eleven years old when Neil came out with this song and I can still remember listening to it on the radio ! Those were the days...............

Neil Diamond singing Song Song Blue

Christmas Eve from our home in the desert of California

A Must Read...

T'WAS THE NIGHT BEFORE CHRISTMAS,> HE LIVED ALL ALONE,> IN A ONE BEDROOM HOUSE MADE OF> PLASTER AND STONE.>> I HAD COME DOWN THE CHIMNEY> WITH PRESENTS TO GIVE,> AND TO SEE JUST WHO> IN THIS HOME DID LIVE.>> I LOOKED ALL ABOUT,> A STRANGE SIGHT I DID SEE,> NO TINSEL, NO PRESENTS,> NOT EVEN A TREE.>> NO STOCKING BY MANTLE,> JUST BOOTS FILLED WITH SAND,> ON THE WALL HUNG PICTURES> OF FAR DISTANT LANDS.>> WITH MEDALS AND BADGES,> AWARDS OF ALL KINDS,> A SOBER THOUGHT> CAME THROUGH MY MIND>> FOR THIS HOUSE WAS DIFFERENT,> IT WAS DARK AND DREARY,> I FOUND THE HOME OF A SOLDIER,> ONCE I COULD SEE CLEARLY.>> THE SOLDIER LAY SLEEPING,> SILENT, ALONE,> CURLED UP ON THE FLOOR> IN THIS ONE BEDROOM HOME.>> THE FACE WAS SO GENTLE,> THE ROOM IN SUCH DISORDER,> NOT HOW I PICTURED> A UNITED STATES SOLDIER.>> WAS THIS THE HERO> OF WHOM I'D JUST READ?> CURLED UP ON A PONCHO,> THE FLOOR FOR A BED?>> I REALIZED THE FAMILIES> THAT I SAW THIS NIGHT,> OWED THEIR LIVES TO THESE SOLDIERS> WHO WERE WILLING TO FIGHT.>> SOON ROUND THE WORLD,> THE CHILDREN WOULD PLAY,> AND GROWNUPS WOULD CELEBRATE> A BRIGHT CHRISTMAS DAY.>> THEY ALL ENJOYED FREEDOM> EACH MONTH OF THE YEAR,> BECAUSE OF THE SOLDIERS,> LIKE THE ONE LYING HERE.>> I COULDN'T HELP WONDER> HOW MANY LAY ALONE,> ON A COLD CHRISTMAS EVE> IN A LAND FAR FROM HOME.>> THE VERY THOUGHT> BROUGHT A TEAR TO MY EYE,> I DROPPED TO MY KNEES> AND STARTED TO CRY.>> THE SOLDIER AWAKENED> AND I HEARD A ROUGH VOICE,> 'SANTA DON'T CRY,> THIS LIFE IS MY CHOICE;>> I FIGHT FOR FREEDOM,> I DON'T ASK FOR MORE,> MY LIFE IS MY GOD,> MY COUNTRY, MY CORPS.>> THE SOLDIER ROLLED OVER> AND DRIFTED TO SLEEP,> I COULDN'T CONTROL IT,> I CONTINUED TO WEEP.>> I KEPT WATCH FOR HOURS,> SO SILENT AND STILL> AND WE BOTH SHIVERED> FROM THE COLD NIGHT'S CHILL.>> I DIDN'T WANT TO LEAVE> ON THAT COLD, DARK, NIGHT,> THIS GUARDIAN OF HONOR> SO WILLING TO FIGHT.>> THEN THE SOLDIER ROLLED OVER,> WITH A VOICE SOFT AND PURE,> WHISPERED, 'CARRY ON SANTA,> IT'S CHRISTMAS DAY, ALL IS SECURE.>> ONE LOOK AT MY WATCH,> AND I KNEW HE WAS RIGHT.>> 'MERRY CHRISTMAS MY FRIEND!> AND TO ALL A GOOD NIGHT.>> This poem was written by a U.S. military service member>> The following is his request. I think it is reasonable.....>> PLEASE.>> Would you do me the kind favor of sending this to as many people> as you can? Christmas will be coming soon and some credit is> due to our> U.S.service men and women for our being able to celebrate these> festivities.>> Let's try in this small way to pay a tiny bit of what we owe.>> Make people stop and think of our heroes, living and dead, who> sacrificed themselves for us.>> Please, do your small part to plant this small seed .

Thank you and may God bless our Troops and may He bless America!

Merry Christ-mas,

David

Today's update on the health insurance fiasco

I received mail today from Pacific Care my so-called health insurance company. It was a notice of non-eligibility for services I received on November 14, 2008.

I received my twice monthly IVIg infusion that day in which is always pre-approved by my insurance company. So, what has changed suddenly? NOTHING except the incompetence of this company!

I have been fully covered with this health insurance company since 2006 when I was a full time employee of McLaughlin Engineering and Mining company out of Temecula, California. I was forced into the disability world at the end of January 2007. I was on family leave until June of '07 at which time I went on Federal COBRA which I'm still on.

I am responsible for my own premiums and I am paid up till the end of this year. This is a huge mistake that needs to be fixed. I hope to get some help from various advocacy organizations and possibly legal action this coming week.

Stay tuned,
David

Health Insurance Update

My health insurance was cancelled on November 25th with no warning or explanation. After many many phone calls and emails the insurance company and my former employer finally corrected the severe mistake that had happen.

For now, I've been able to find out that it seems my former employer did not pay the group health insurance on time and they cancelled the whole group without thinking this could kill someone. It really had the potential to cause death and many terrible injuries. This is far from over. My health insurance coverage was corrected in the late afternoon of December 3rd, 2008. NINE DAYS LATER!

I have received (too many to count at this time) phone calls and emails from friends, healthcare organiztions, advocacy groups from New York, Washington, D.C., Sacramento, San Francisco and from all over southern California.

I will continue to blog about this situation as the "investigation" continues to unfold.

P.S. I am completly disabled and my premiums are not paid by my former employer but are my responsibility through the federal COBRA laws. This should not have ever happened.

May God bless you and God bless America,

David Hines
Patient advocate and
Peripheral Neuropathy, CIDP, Idiopathic progressive polyneuropathy,
Painful Diabetic neuropathy (sensory and motor)
and Disturbance of the skin sensation (its really a diagnosis!) patient.

God is always good !

I am always thankfull for what God does in my life. I heard there was a yard sell just down the road a spell and I drove over and the lady who was having the sell was once in the health field and knew about Peripheral Neuropathy!

She even knew some about CIDP, (Chronic Imflammatory Demyelinating Polyneuropathy).

It is very, very rare that I find people (and even doctors) who have never heard of PN much less know something about the disease. I was so excited about that. We talked for about 15 minutes about various things in regards to PN. We even had a brief talk about stem cell research and how it may cure or at least help so many different types of diseases and especially neurological diseases and disorders. It was such a pleasant brief time of conversation. I truly enjoyed it.

As they say, "It made my day". Thanks to God who continuse to put people in my path who give me HOPE and Inspiration!!!

God bless,
David

Polyneuropathy

To Anon:
What type of neuropathy do you have? Who dx you? Have you seen a neuro? What test(s) were done to back up dx? What meds are you on? and who prescribed them? How bad is your pain on a 0-10 scale?

Stay in touch,

David

Health Insurance CANCELLED !!!!!!!

My health insurance was cancelled as of November 25th....HOW COULD THIS HAPPEN?

It's kinda a long story but it's one every person needs to hear. It could effect your peripheral neuropathy, CIDP, IVIg, pain medications, etc, etc. It affected me in a big way. The catch is....it was a mistake? I'm on COBRA through my former employer and the whole group was terminated. All because of a human error by my former empolyer. It's that easy.....and bam it hit me like a sledge hammer....I am so tired and in so much pain I will need to finish this blog another time.

David