Crohn’s disease and other medical drivel

[DavidR8]

Yikes, I wish you a speedy recovery. I'm sure the lot of us can keep you distracted with plenty of questions!

 

[rabler]

Randal,

Rest now and recovery from the latest bout.

Plan for how you can spend some time this summer after surgery. Line up some low physical effort, but good mental distractions to get you thru.

You have always been a voice of sound reason here, do please keep posting and helping when you can.

Brian

Brain
Thanks for the kind words, "voice of sound reason", I try, but there are times I know I rant too. I had a friend in Atlanta, we had a standing joke line,
" someone is WRONG on the INTERNET!".

I actually just dragged a 3' x 4' white board out into the shop. First thing on the list is to mount it on the wall. Then use it to keep the list!

I have several things in the queue, and I suspect it will be more a matter of spending more time seated and pondering between things. Unfortunately, the bridge crane isn't going to be finished. So my list of shop projects, not in priority order:

1) Finish the bridge crane. (While it has been planned all along, working on the rotary table got too difficult with overhead lifting, so ...)
2) My RPC monitoring electronics needs some refinements, and move the back end to low end the intel NUC that I bought for that purpose
3) Working on the rotary table automation. Thinking I'll just switch to the Arduino IDE first to debug using a TFT LCD display rather than trying to import the Adadfruit code into the RPI PICO SDK.
4) There's that VMC that I bought that needs rebuilding (electronics/linuxCNC?). Waiting on Mesa/FPGA availability for the controller cards. Crane would be handy here too.
5) 2 surface grinders that need rebuilding. Then I can teach myself to surface grind ...
6) a Monarch 10EE that needs to be put together. Going to try to save the DC motor but a VFD and Marathon Black max w/o back gear may be in the works to get it running (sorry @Cal Haines ).
7) The big Monarch 612 needs a one shot oiler for the carriage/cross slide.
8) I'd like to turcite/moglice the carriage on the Monarch 12CK, and do a full precision scraping on the cross slide. And Moglice the tailstock quill.
9) There's a ton of shop organization projects that I could do (starting with mounting the white board)

Hmm, wonder if I should petition the admins here for a project list under my name?

When all else fails, I have a pretty good collection of computer games. (Netflix/Youtube are truly last resort).
I'm sure I'll be taking many breaks and reading/posting here.

Did I mention I'm thinking of starting to build a new house once I recover from all of this stuff?

 

[brino]

just dragged a 3' x 4' white board out into the shop

Randal,
You're gonna need a bigger white board!
Brian

 

[rabler]

Randal,
You're gonna need a bigger white board!
Brian

Obviously a new house is needed to hold that bigger white board!

 

[rabler]

Rabler, just take one day at a time and do what you can handle.

Your coma story is scary. Yikes.
Retirement is the biggest blessing in all of this. It does give you the option of taking things at your own pace, rather than the world driving you at some manic pace ...

 

[BGHansen]

Randal,

You have our thoughts and prayers for a speedy recovery. We've chatted regarding my son's Crohn's experiences. I pull up your posts to encourage him when he gets down; you're a great "poster child" for Crohn's sufferers! It is a debilitating disease, but you have pushed on through an accomplished more than most who have no ailments!

Best regards, Bruce

 

[Aaron_W]

Sorry to hear you've had to deal with it. Yep, there are worse things. Crohn's has been a pain in the literal *ss. But I've survived it. Thankfully I've avoid an illeostomy or other such fun. And the newer biologics (Remicade, Humira, Stelara, etc) are getting more effective with less side effects. I shudder thinking back to the days when low dose steriods were the only maintenance treatment.

I'm another that dealt with it. Mine started senior year of high school and went on for about 5 years ultimately ending with the removal of 6-8" of small intestine. Cost me a good part of my early 20s living as a walking skeleton, but thankfully the surgery was the end of the experience for me. I occasionally run across others dealing with it, and realize how lucky I have been that it is just something from my past.

I had my gall bladder out 2 years ago, and while they were doing that they cleaned up some of the scar tissue from the 1991 surgery. The surgeon saw no evidence of Crohn's lurking, but since I hadn't had any real follow up since the mid 90s they got me in to see a specialist, just to be sure.
He was asking me about the treatments I received when I was dealing with it, and it was kind of amusing. I guess they have learned a lot in the past 30 years, because some of the meds they treated me with must be like using leaches and boring holes in your skull to get the bad sprits out based on his reaction.

 

[rabler]

Back at the Mayo clinic today & tomorrow, CT scan to image the small bowel as part of an evaluation to see if surgery makes sense. Also some unrelated followup on previous cancer. I'm hoping surgery is an option, as previous experience suggests it would buy me a couple decades of relief from some difficult symptoms.

 

[rabler]

I guess they have learned a lot in the past 30 years, because some of the meds they treated me with must be like using leaches and boring holes in your skull to get the bad sprits out based on his reaction.

Yea, 30 years ago you were probably treated, at least initially, with prednisone, which has all sorts of side effects due to the broad interactions. The newer drugs are much more targetted specifically to Crohn's. They are also horribly expensive and without some sort of insurance people are hard pressed to afford them, I'm luck enough to be on a decent medical plan from my former employer.

 

[BGHansen]

Yea, 30 years ago you were probably treated, at least initially, with prednisone, which has all sorts of side effects due to the broad interactions. The newer drugs are much more targetted specifically to Crohn's. They are also horribly expensive and without some sort of insurance people are hard pressed to afford them, I'm luck enough to be on a decent medical plan from my former employer.

I mentioned it before on another thread regarding insulin, but figure too much info is better than not enough; here's my PSA regarding high-cost medications.

Our son has Crohn's also and used to take Humira. That was a (as billed to insurance) $3200 shot every 2 weeks. Blue Cross Blue Shield had an agreed upon contract amount with Humira's producer at $1600 per shot. My insurance out of pocket max was $3600 a year, so by February we were always maxed out.

My wife was talking to a coworker who has Crohn's and was also on Humira. She mentioned the cost, he asked why our son wasn't a Humira ambassador. My wife checked the Humira website, filled out a questionnaire, and our son was accepted as an ambassador. His sponsor would call every 4-6 weeks and ask him 15 minutes of questions on how he was doing. End result: His Humira shots dropped to $5 for two!

Our son Steven was showing a high marker for inflammation which was interpreted by his GI to be his body starting to reject Humira. He changed to Skyrizi around 6 months ago. Same deal there; infusion every 3 months for about $30,000. He signed up as a Skyrizi ambassador before he'd had shot number 1 and was accepted. Same monthly phone call for 15 minutes, same cost of $5 per infusion.

Moral of the story is if you or any loved one ends up on a long-term med, check if the supplier has an ambassador program. It still never ceases to amaze me how/why they can either charge around $100K a year, or more or less just give it away and still stay in business.

Bruce