I am practicing alone, cannot sit zazen any longer, my practice is lying or reclined now.
I appreciate the food tips, I have been studying this for some time, I also avoid all dairy and nightshades as well.

My pain levels have been nearly intolerable for some time... I have had to use the chair almost every time we have gone out lately.
My stimulator stays on.
Yesterday the Dr. that deals with most of my meds doubled several of them.
I don't want to begin to think of what this is going to do to my next liver count....
The last x-ray I had looked pretty bad for my upper spine. I get a CT scan now because they want to see just how much faster the bone and connective tissue degeneration is progressing.
I know it should not, but the curiosity aspect to my treatment bothers me... I don't really know why. I think THAT is what bothers me the most. I am usually pretty self aware about this kind of thing.
Been very off-balance since a trip to Sea World where I was treated pretty badly by a lot of people and some of the staff. Like a thing, something to be taken advantage of, to be swept aside, ignored, stepped over, gotten in front of. Not human, not fully. I would say "excuse me" after they got in front of me in line, stepped in front of me before an aquarium, or put their kids in front of my chair and they would just look at me and turn back around. Not worth it. What am I going to do? It was all day, for two days.
Someone assigned to help me get my food at a buffet, walked away from me as soon as her supervisor left... she stood ten feet from me and ignored my calls. A guest went and got my mother-in-law, who helped me as her food got cold... there is more.
I am going to go back... but when? What to do. It has to be before I get worse.
I wonder if anyone is reading this any more? I don't really think it matters.

We're still reading man. Your willingness to share is admirable. I don't know if I could write about it, but I'm learning something about your perspective. thank you. g

I'm still reading. Sadly all I can suggest is that you carry around a cattle prod next time you goto SeaWorld. I say that without sarcasm too.

I am still reading, keep typing/talking.. Venting helps you, and helps us understand what other REAL people go through. I have done some more digging, but other than the food choices, aromatherapy, meditation, meds, and everything else you are already doing.... there is not much else I can suggest. The crystal therapy helped me, as well as the reiki/shambahlla healing. Also you could try removing negative energies from your home ( if you have not already)
I have lit a candle for you, and hope something helps your pain.

I'm still reading. I, too, think it's good to vent - I know for sure that it does you no good at all to bottle stuff up. I hope that the support we can offer through the Cellar helps a little. Sometimes all the Cellar can be is a little distraction, but sometimes it is good to know that there are people wishing you improvement, strength, patience and a high-voltage cattle prod :eek: !
All the best from across the water.

I've read all 96 posts so far in this thread. I'll keep reading it too. So keep posting.

I don't have much to offer in response, but wish you well.

Another fun fact... the Sheraton hotel's disabled room I stayed in was inside (not a room with a view), smaller than a regular room, and $30-60 more than a regular room. When I told them I did not want a disabled room (I only use the chair when I have to be out for long periods), they put me in it anyway.
They only took the charge off after my wife complained about it for a while.
All of the handicap seating at Sea Word is obstructed view... the hits just kept on coming.
I am fine at home and still do all the Yoga I still can and meditate regularly.
I have a very positive attitude about my condition, usually. Something my Dr.s constantly compliment me on. I think of myself as a very fortunate person with this being my negative thing, we all have something in our lives that causes us pain.
This really blindsided me.
BTW, I have an inflamed lymph node in my side that is pretty painful that may be infected... CT has been ordered for Mon.

Thank each of you for your support. As to the advice on how to deal with them, like a cattle-prod, thought I know it is in jest, I will not lower myself to their level. Rudeness in return just makes me the same as them. It is a quandary.

On a completely other and frivolous level, the only way I could cope with the idiots who, for example, have to stand by the bus exit door because they will be getting off the bus (though that may be thirty stops away and 150 other people have to get off the bus before them) is to admire their self-centred attitude and their stupidity. Would that work for you, RK? It is an admiration that has to be cultivated (forced at first) but in the end I found it a helpful thing to do.

Sorry, but I'm not sure I understand what you are saying?

You're right of course rkzenrage. I'm in perfectly fine shape but in certain places people treat me like I'm not there too. Very infuriating, like they have a red carpet in front of them.

I understand.

You don't want to descend to the ignorant level of the fuckwits who treat you as though you weren't human by acquiring a cattle prod and using it on them. Is it possible, however, to take a mental step back and admire their ignorance?
I managed this mental trick with the stupid people who stop and stand still at the bottom of escalators (moving stairways) because they don't know which way they're going next, or those who stand close to and obstruct the exit door of a bus for several stops because they will need to get off the bus and are oblivious of the fact that so does everyone else who is travelling. These things used to make me disproportionately angry and I dealt with it by the trick of admiring their self-centred-ness. Initially this was a forced reaction, but eventually it came more naturally to me and was a hell of a lot more comfortable than fuming all the time.
I do repeat that I fully understand that the irritations that used to get my goat are not comparable to the rudeness you have described and therefore my method may be totally inappropriate.
Wishing you all the best.

Got the handy-van yesterday. It is amazing. The hydraulics that lower it when the ramp comes out is very cool. Everything is automated, except the straps to tie my chair down, but those tighten themselves down. My son's car seat is right next to me, so I get to interact with him as we travel (though he likes to kick my chair... good with the bad).
Making some small cards to inform those who park in the loading zones of the disabled parking spots that I have called the police on them and taken a photo of their car with my phone. The fine is pretty hefty in FL, but is used to be much more.
The thing in my side still hurts, but it is not a lymph, so it is either a cyst or tumor. I try to think cyst, but I get them and none of them hurt. I also have developed kidney stones... like my back did not hurt enough already.
I am truly blessed to have the family and support structure that I have. Most in my position would not have the home and now transport that I do. It is so hard to remain positive sometimes, pain is hard on one that way, but I do know it and try to keep it in mind. I am in love with my wife and love my son... but am very lonely for friends. When I got sick, people just kinda' stopped coming over. I know it is hard to see someone in pain, it is uncomfortable, I do not blame them.

Kick back, have some cranberry juice for the stones, and if it won't interact with your meds, add some vodka to it.