Re: PSC on YouTube (Wim's reply to the replies)

[Guest guest]

Wow, I had not counted on such a warm response to my YouTube videos!

The video (my second—split into three parts) was actually not

motivated with ANY thought toward the PSC support group. I just

decided to post it as an afterthought. I will submit some comments

about THAT part of the video in a new post, titled " PSC vs. God. "

Here, let me express my thanks to those who have written nice things

about the video, posted comments, and requested subscriptions. Also,

let me reply to some of your specific questions and comments.

Marie: You are welcome!

(post-transplant, wow!!!): Yes, the chills can be MISERABLE!

Just this morning I had my annual appointment with Dr. Raiford (more

on this later). I always get a little irritated with the

questionnaire that asks if I am in pain and, if so, how much. This

seems like SUCH an unfair question: The chills are not really

painful, but they can be WORSE than being in pain!

Penny: Hmmm… Your sister doesn't want to know about your physical

condition? (Or perhaps not about your spiritual one?)

Chaim: With a name like Wim (and the accent to go with it): Yes, I am

most decidedly Dutch. Or I should say: I WAS for the first 31 years

of my life, before I became a U.S. citizen.

Ian: I am a mix of a physicist, engineer, computer programmer, data

analyst, and write a lot of technical papers. I work as a one-man

company doing rather sophisticated subcontract work for a major

research facility. And I, too, get to do a good bit of work from

home, though I have also perfected the art of taking naps in my car

when I am at the " major research facility. " I am still a little

circumspect about my exact circumstances, because my dear wife of

almost 25 years is still reluctant about my desire to " put myself out

there " on the Internet. But I saw tears coming to her eyes when I

showed her the responses to my video. Perhaps, after a little while

longer, I can share my full personal info.

-joy: I agree, more people need to know about this disease. I

will try to do my part in getting the word out!

Bettyann: Facebook is still on my to-do list. I'll have to get one of

my kids (we have four) to show me how!

: Yes, we are both blessed with a guy like Dr. Raiford. And

if you should ever need an ERCP done at Vanderbilt: Ask if Dr. Lind

can do that for you!

Tim: Thanks for helping Ian find my first video.

Bobbi: Good luck with the transplant! Dr. Raiford told me this

morning that I am not at that point yet.

Carolyn: Yes, I hope Dave doesn't mind us using his signature line!

( " Better than I deserve! " )

Jodianndan: Faith and healing: Yes, join in! (And I with you!)

Arne: Gutsy? Not really. I am a man on a MISSION, with new

INSPIRATION in my life! See my upcoming post: PSC vs. God.

Julygirl7306: My heart just aches to hear that, occasionally, this

nasty disease strikes people when they are still young. May strength

and blessings be with your son, yourself, and the rest of your family.

Apologies if I have overlooked someone else's comments.

--Wim

>

> Hi:

>

> I have posted to the group a couple of times under the made-up name

> . My real name is Wim. I have been coming out into the open

about

> my condition and have put a set of videos on YouTube to help

> acquiantances (some long distance) to get a feel of what it is like

> to have PSC. Perhaps members of the group will receive some benefit

> from this as well. I plan to set up a FaceBook page soon also.

>

> About the videos on YouTube:

>

> Look for WimTube002a, WimTube002b, and WimTube002c.

>

> Or perhaps the links below will get you there:

>

>

>

>

>

>

>

> Wim (aka )

>