Brief Update: 7-8

Just swinging by for a quicky.

Have had a lot going on lately, haven't even had time to lurk in the background.

For starters, my long term oncologist of 5 years either got fired or quit. Found out at my June regular session. Something bad happened, still trying to find out. Still waiting to see if Gibbs is going to assign me a new doctor. Really upsetting to me, as all my prescriptions were being handled by him, those are up in the air, and I have been faithfully following his "plan" for my PC situation. In the meantime, I am searching for a new one, either outside of Gibbs, or if I have to, through the VA - though the VA still tells me that in my area, they don't have anyone as remotely qualified as my ex-doctor. This event really took me off guard.

I have begun treatment long term for PTSD. Met with my VA doctor just today after 2 sessions, and he transferred me from short term to long term care. Not sure where its really going.

Finally got a proper dx. of all the burning and numbing in my left side (sometimes right), found out earlier this week that I have Merlalgia Paresthetica. That's a mouthful. Going to a higher level Surgical Neurologist team. Not certain, but will probably involve major surgery in my hip and thigh.

So the battle goes on and on, but feel better just getting some positive dx. of some of this.

Oh, almost forgot, can't wear my dentures, because I now have a weird infection in my upper gums and the bones beneath them, related to the radiation damage that caused me to have all my teeth removed in 2014. The dental radiation specialist with the VA is coming in from Columbia to access the new damage.

And people wonder why I am so "down" on radiation. For me, both my radiation events basically destroyed me from one end to the other. Wished I had never undertaken either time.

Still hanging in there, don't have many options other than that. When I get the chance, I need to come back and catch up with friends here.

thank you, beth

I was getting worried after not seeing any postings from you, sorry about the doctor.
Hope you can get a new doctor soon so you can continue on your medications.
Worried about you on that. You have my prayers always.

I'm sure it's frightening to have a long term Dr you trust disappear like that. I had a great rheumy get a rare heart cancer and die on me - haven't found anyone like him and that was over 8 years ago. I sure hope you have better luck!

Glad to see an update, and hopefully they can figure out something less invasive than surgery to help you out.

Cheers.

Hello Purgatory,

Sounds like you are finding some answers ... along the wayward path you've had to travel ... I know there's been roadblocks along the way ...

Hoping that your new assigned doctor will be EVEN BETTER than your past doctor --- I'll keep sending POSITIVE VIBES your way --- it's hard to transition to a new doctor, but if the new one is even better, then I'll be thankful, in your case !

I am thankful you have gotten some answers along the way --- it sounds like they are getting a better assessment of things --- it seems like a treatment plan is starting to emerge.

Stay focused --- keep forging ahead --- stay on your TREATMENT TRAIL --- stay focused on small, step-by-step goals ---

Keep checkin' in here --- lots of brothers at this family reunion each day !

Sent with my best, from here in the Midwest,

I.S.U. "Cyclone Team Fan"

To clarify, the PTSD is not related to combat or the military, its been diagnosed as PTSD related to Medical and Chronic Pain Trauma. There are all types of PTSD, aside from combat, sexual or child abuse, etc. My assigned VA home nurse picked up signals from me nearly a year ago and was suspicious, but I was in serious denial at the time. All my toughing out things on my own the past 8 years, has come back to bite me in the end. Guess I wasn't as tough as I thought I was.

Thanks, Chart, sounds like you are speaking from 1st hand experience. I empathize fully with you. Yes, the nightmares, have always been a big part of my adult life, but have become a major disturbing issue for me. I dream every time I sleep, and can remember them in full detail. Anytime I am asleep, I am in a nightmare. They vary in theme, but some are repeat subjects. I tell people, I know what hell is like, because I have visited hundreds of rooms in hell in my dreams. The past few months, they are becoming more violent in nature. I have been murdered by every possible method you could imagine.

And I have died in so many ways. Soon as I die, I wake up in a fright. I have been shot, stabbed, ran over, thrown off buildings, you name it. My own theory, is that its my brains way of interpreting the pain my body is still fighting while I am asleep. But I could be way wrong about that, just a guess. Everyone once in a rare while, I have a pleasant dream, but probably only talking once a month at best. Those are the ones that you are so disappointed to wake up from. Sigh.

Admitting that I needed a more serious method of help was a big first step for me. The only thing I made the VA understand, is that I was not interested in being put on anti-physcotic meds. Been there, done that in the distant past, almost destroyed me. Won't do it willingly again.

BTW, still dearly miss our friend Barb, still have a hard time accepting her death, though I am convinced it was an act of mercy that she is no longer with us. No one I ever knew suffered as much as she did.

Hi David,

It's great you have a diagnosis. I looked up Merlalgia Paresthetica, apparently common in teenagers that wear those skinny jeans and squat. Of course it is caused by other reasons as well. Good luck with it.

Aimzee, so great to hear from you. Saw your note on the Tall Allen post. Sorry to hear about Ron's hernia and him being unable to walk. There is so much to bear sometimes but with your help I am sure he will find a way to get through it. Paul is well. PSA test next month.

Regards,
An

Going to break away for another unspecified period of time. Appreciate those of you still concerned with my situation, always have.

For the most part, many of my original comrades here from years ago have long moved on. I do not know many of the new generation here at HW. I have nothing to add useful other than the same tired often repeated stories from my past.

Probably my only useful contributions would be assisting anyone dealing with chronic stricture issues, long term catheter use, Urostomy related matters, etc.

I will check back again one day, especially if there are any positive or breaking developments with my own journey. The problem I have with all forums, I belong to several (none of the others are PC related), is I just can't get into the politics of a group - not my style, and I know that I am not capable of pleasing all of the people all of the time. Plus, I admit, I am not the most social of creatures on-line or in real life. Try getting me on a phone, almost mission impossible.

The saying, "be true to one's self", to me is a good one. That and my other fave, "live and let live".

I've notice all the changes here over the years, seen and heard a lot in 8 years. I remember way back, when moderators would call out someone for calling a new person "a newbie". It was not PC at the time to do so, but I see now, most people use the term. Must be part of the changing of the guard.

So for now, peace to one and all. When I have taken away periods in the past, seems to be split between those that it makes sad, and those that are obviously glad. Pretty well how I rub people in real life too. I call no one an enemy in my world, I just can't be everyone's cup of tea, and that's ok by me. Odd ducks swim in strange circles.

Ok, David, I understand your need to take time off. I will miss getting updates on how you are doing.

Some days I miss Barb so much I can't stand to visit HW at all. Not good since I'm a mod! lol Time for that may be past, perhaps.

Peace.

David, I always stop by to see how you're doing. I do understand your need to take a sabbatical leave. I hope you will make progress with the counseling. I just hate to hear all you've gone through. Ron sends his best and that he's just not all into "this computer thing"! He's going to try to drive (his car, not a golf club) on Monday. He still needs to make a break in taking the pain killers. I'm sure you understand when pain gets that bad. He will go for his PSA testing in August.

An, so happy to hear Paul is doing well! I come by to check on a few of the gents over here. David, you are in our prayers! *HUGS*

Lynnwood, is there a pain thread in this forum. I hope all is well with you, too.

Just checking by to see how David is doing. I hope all is well.

David
Hope you are getting some R & R..
And having time w/family & friends.

Prayers