Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)


advertisement
Reply
 
Thread Tools Display Modes
Old 05-04-2010, 08:25 PM #1
Rrae's Avatar
Rrae Rrae is offline
Grand Magnate
 
Join Date: Nov 2009
Location: i thought it was in my left pocket
Posts: 4,117
10 yr Member
Rrae Rrae is offline
Grand Magnate
Rrae's Avatar
 
Join Date: Nov 2009
Location: i thought it was in my left pocket
Posts: 4,117
10 yr Member
Heart Update on our Bobber !

I feel so honored to be able to share with this family that I just got off the phone with our brother Bobber! ......

This man amazes me more and more as the days progress....
He continues to let his FAITH outshine the medical mismanagement that he has fallen victim to..... miscommunication in his medical care is one of the biggest culprits working against him, but in time things should come together and take shape....

His voice sounds very strong and he is firmly planted on the Word of God.
This came as much comfort to me, as I had pictured him being very weak physically and mentally after what he's been through.

He is very disappointed with the way things have gone in his treatment plan, but still remains hopeful that the Ketamine will come into play here shortly. He and his wife must travel 5 hours one way to get to the medical facility.

When I asked him what he would like me to say to his 'family' here......
He asked for prayer ...... Among many, these are the scriptures he shared with me : ROMANS 9, JOHN 15, ISAIAH 65, PSALMS 51, MALACHI 3:16-18...

When he is more able to use his hands to type, I will leave it to his discretion as to what he shares regarding his medical details..... needless to say, he is in a lot of pain........but he never ONCE expounded upon that unless I asked. Instead, he lifted up the Word Of God and preferred to keep that the focal of the conversation.

I think he has recently spoken with our dear friend 'fmichael' as well, so hopefully Michael will feel inclined to expound on things I may be leaving out....

I'm at work, so must sign off, but didn't want to let another moment go by without sharing what I knew because I know how many loving people here care about his welfare. He appreciates us more than words can say.

We closed our conversation with a very heartfelt prayer and I see this man for what he is.......a TRUE man of faith. Humble, yet solid in the Word.

He thanks everyone for their prayers

Rae
Rrae is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
AintSoBad (05-07-2010), edever34 (05-05-2010), fmichael (05-05-2010), hope4thebest (05-05-2010), Kakimbo (05-05-2010), Lisa in Ohio (05-04-2010), SandyS (05-06-2010), Wilbyfree (05-04-2010)

advertisement
Old 05-04-2010, 10:06 PM #2
finz finz is offline
Senior Member
 
Join Date: Feb 2007
Posts: 1,804
15 yr Member
finz finz is offline
Senior Member
 
Join Date: Feb 2007
Posts: 1,804
15 yr Member
Default

Thank you for being the messanger girl, Rae !

Continuing my prayers for you Bobber
finz is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
Kakimbo (05-05-2010)
Old 05-05-2010, 12:40 AM #3
hope4thebest hope4thebest is offline
Member
 
Join Date: Jan 2009
Posts: 305
15 yr Member
hope4thebest hope4thebest is offline
Member
 
Join Date: Jan 2009
Posts: 305
15 yr Member
Default

Rae, Thanks for helping Bobber with your phone call and sharing in prayers and conversation with him...
We miss Bobber and his constant optimism and faith that he shares with everyone, we miss his kind heart.

Bobber, We keep you in our prayers and and hope we can lift some of the burden from you with our love.
Though we don't know the details of your daily challenge, we know that you are in the midst of an indescribably hard time, for you and your wife.
I am sorry you have to travel such a distance for your medical treatment..
Bobber, may your pain subside and may comfort be restored to you..
love from Hope4thebest
hope4thebest is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
Kakimbo (05-05-2010)
Old 05-05-2010, 04:19 AM #4
fmichael's Avatar
fmichael fmichael is offline
Senior Member
 
Join Date: Sep 2006
Location: California
Posts: 1,239
15 yr Member
fmichael fmichael is offline
Senior Member
fmichael's Avatar
 
Join Date: Sep 2006
Location: California
Posts: 1,239
15 yr Member
Thumbs up

Rrae -

Hi. Thank you for posting. Since speaking with Bobber Tues. afternoon/evening, I've been trying to find some information on a Wal-Mart Pharmacy site that he wanted me to share with you, but I can't come up with it.

So to begin on a purely practical note, Wal-Mart has a couple of programs that have made quite a difference for Bobber. First, except for narcotics, etc. (Schedule II drugs) Wal-Mart allows people to fill only that portion of a prescription they wanted to pay for right now, keeping the balance on reserve for filling at a later date. So if a month's supply is 30 pills, you could buy it a week at a time over the while month - at the same price per dose that you would normally pay - think of them as mini-refills on a single monthly refill, while at the same time you have of course so many monthly refills as the prescription allows.

More significantly, and here's where I could really use a good link, they have a program where if you believe that you will be using a lot of a certain medicine over time, you can sign up to "purchase" a wholesale quantity of the drug - say a 1,000 capsule bottle at the "wholesale rate," while only paying for and taking as much of the medicine you need at one time. According to Bobber, the best part of this is that you're not obligated to complete the purchase of the "wholesale quantity." Not sure if this is true in any case or if it has restrictions, such as giving you an out when your doctor switches your medications. However, Bobber said that it was his understanding that you could walk freely away from a bulk "purchase" for ANY reason whatsoever and that this is a nationwide company policy.

Again, if anyone could fill in the blanks for me it would be greatly appreciated.

Now as to Bobber himself, he sounds great, if a little frustrated by the delays. He was in the hospital for a few days of tests and observations, but the doctors apparently want to have the inflammation in his back subside a little more with oral meds, before they simultaneously re-install (this time correctly) a cathedra to continuously irrigate the nerves coming out of the spine with a mixture of meds while simultaneously infusing ketamine through an iv in his arm. While he understands that the nerves coming out of his spinal column may not be in a position to withstand the threading of a second cathedra for a few weeks, he's doing what he can to get one or more blocks in the interim, to encourage the swelling to go down (presumably using a steroid of some kind), while at the same time dosing the area with a local anesthetic, in order to minimize whatever risk of "spread" there might be in the few weeks it will take before the nerves can withstand any sort of an invasive procedure. Complicating things, of course, is the 5 hour commute Rrae spoke of.

At least for now, the important thing is that he has a good relationship with the medical school pain specialist, who clearly "gets" what's going on with him and it appears will do what's required to make the full resources if his institution available for Bobber's use. It's as though he's now one of a handful of state-wide high profile pain cases. And the circumstances certainly require no less

Mike
fmichael is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
edever34 (05-05-2010), Kakimbo (05-05-2010), olecyn (05-06-2010), Rrae (05-05-2010), sukadog (05-05-2010), wswells (05-05-2010)
Old 05-05-2010, 07:56 AM #5
Rrae's Avatar
Rrae Rrae is offline
Grand Magnate
 
Join Date: Nov 2009
Location: i thought it was in my left pocket
Posts: 4,117
10 yr Member
Rrae Rrae is offline
Grand Magnate
Rrae's Avatar
 
Join Date: Nov 2009
Location: i thought it was in my left pocket
Posts: 4,117
10 yr Member
Thumbs up Thank you Mike !

Good Job !

I was hoping you'd give the medical update, as I was afraid I'd miss something, or miscommunicate.....you did a great job! Now everyone can be on the same page and know exactly where Bobber stands!

That's pretty cool about the walmart thing

I'm so glad you posted!
Rae
Rrae is offline   Reply With QuoteReply With Quote
Old 05-05-2010, 08:09 AM #6
mrsD's Avatar
mrsD mrsD is offline
Wisest Elder Ever
 
Join Date: Aug 2006
Location: Great Lakes
Posts: 33,508
15 yr Member
mrsD mrsD is offline
Wisest Elder Ever
mrsD's Avatar
 
Join Date: Aug 2006
Location: Great Lakes
Posts: 33,508
15 yr Member
Lightbulb

I am curious about the alternative pricing at WalMart. Their website does not have it. And it might be a "request" option of their staff at each location. Being able to override prices in the computer system would be done at the mainframe level. So some procedure must be there in place for this offer. I don't think WalMart is advertising this yet, so people should investigate this pricing potential locally.

I will add that dispensing CII opiates (and other CII drugs) is legally controlled by the state in which you live. Some state laws are very strict and do NOT allow partial fills as described here.

Each person reading would have to investigate their state's CII laws to see if this option is permitted. In general states with heavy diversion of drugs have stricter laws about this.

Bobber, I hope you find some relief with these new procedures.
You have my positive thoughts during this trying time.
__________________
All truths are easy to understand once they are discovered; the point is to discover them.-- Galileo Galilei

************************************

.
Weezie looking at petunias 8.25.2017


****************************
These forums are for mutual support and information sharing only. The forums are not a substitute for medical advice, diagnosis or treatment provided by a qualified health care provider. Always consult your doctor before trying anything you read here.
mrsD is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
Rrae (05-05-2010)
Old 05-05-2010, 08:16 AM #7
sukadog sukadog is offline
Junior Member
 
Join Date: Oct 2009
Location: sw florida
Posts: 63
10 yr Member
sukadog sukadog is offline
Junior Member
 
Join Date: Oct 2009
Location: sw florida
Posts: 63
10 yr Member
Default Thanks for the update

I'm amazed by the strength and hope here! There's a lot of love, understanding, and courage. Thanks for being messengers. I'm so glad Bobber's getting good help now!

I don't know if this will help, for later when he's feeling better... I type one-handed, so i can't do it long without difficulty but most windows operating systems have voice recognition programs built in-you just need a good mike (i use a headset combo available at target and similar stores for $15 and up). the program can be frustrating sometimes and a few words need to be typed in, so sometimes i end up typing anyway.

from the windows start menu, go to: all programs- accessories-ease of access-windows speech recognition.

it took me many small sessions to set up and it's not fantastic, but it helps.
__________________
wishing you peace and relief! Sukadog crps2 right arm/hand since 8-28-08 (direct nerve injury)
sukadog is offline   Reply With QuoteReply With Quote
Reply


Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off


Similar Threads
Thread Thread Starter Forum Replies Last Post
Spinal cord Stimulator...Bobber look!! keep smilin Reflex Sympathetic Dystrophy (RSD and CRPS) 23 06-12-2011 08:57 PM
I miss Bobber... keep smilin Reflex Sympathetic Dystrophy (RSD and CRPS) 33 06-08-2010 12:26 AM
Prayers for bobber. Kakimbo Reflex Sympathetic Dystrophy (RSD and CRPS) 12 05-01-2010 06:31 PM


All times are GMT -5. The time now is 02:59 PM.

Powered by vBulletin • Copyright ©2000 - 2024, Jelsoft Enterprises Ltd.

vBulletin Optimisation provided by vB Optimise v2.7.1 (Lite) - vBulletin Mods & Addons Copyright © 2024 DragonByte Technologies Ltd.
 

NeuroTalk Forums

Helping support those with neurological and related conditions.

 

The material on this site is for informational purposes only,
and is not a substitute for medical advice, diagnosis or treatment
provided by a qualified health care provider.


Always consult your doctor before trying anything you read here.