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-   Reflex Sympathetic Dystrophy (RSD and CRPS) (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/)
-   -   Update on our Bobber ! (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/121402-update-bobber.html)

Rrae 05-04-2010 08:25 PM

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 :grouphug:

Rae

finz 05-04-2010 10:06 PM

Thank you for being the messanger girl, Rae !

Continuing my prayers for you Bobber :hug:

hope4thebest 05-05-2010 12:40 AM

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 :hug:

fmichael 05-05-2010 04:19 AM

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

Rrae 05-05-2010 07:56 AM

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 :cool:

I'm so glad you posted!
Rae
:hug:

mrsD 05-05-2010 08:09 AM

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.

sukadog 05-05-2010 08:16 AM

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.


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