Sangye's Status

[marta]

Sangye I'm sorry you're feeling like you are at this time. You are a pillar of strength and an inspiration to many and I imagine that must take it's toll over time especially under the circumstances you describe. I was thinking about you the other day and wondering if there is a way that you can either be a consultant or an instructor/scholar or a writer or a personal coach . You're full of wisdom and knowledge and if you can't do the physical manipulation healing of people you can certainly help people grow intellectualy and psychologically. I know I'm pulling a typical 'Mars' move by giving feedback instead of just listening, if you know what I mean, but I see you as a very versatile person, and I see a myriad of possibilities that that I imagine to be just as rewarding as the physical manipulation.... but what do I know, I'm not in your brain. I just think sometimes we need an outsider's perspective to nudge us to see what we might be missing from the insider's perspective.

I'm so totally sending you cyber hugs -

[Sangye]

Thanks everyone. I really appreciate your kind words and support.

Jack, while it's true that I don't have widespread organ damage, the major problem I have is due to damaged adrenals. They control so many functions in the body and are considered the battery pack in holistic medicine. Damage to them affects mind and body. This isn't something that can be remedied by staying on low-dose pred (though that keeps me from going into major adrenal shutdown)-- it's deeper damage. Barring a miracle, it's not considered reparable in holistic medicine. I don't dwell on that thought. I generally ignore it and assume I'll find a way around it, but lately it seems undeniable.

[Jack]

I don't even pretend to understand the mechanisms involved, but I'm guessing that my own adrenals are not in great shape after 25 years of steroids. My inability to get below 10mg of Pred perhaps supports this. However, I have still been able to function reasonably until recently and I guess that I'm wishing that you could at least reach a similar level. Don't write yourself off just yet, keep working on getting rid of those symptoms even if you can do little about the cause.

[Nancy]

Sangye.... Boy, same thoughts and wondering that we all have had... It seems the new balance that we are having to seek is body dependent versus where we were in control before. The idea of a job as it was before may or may not happen... the idea of consulting, writing a book or delivering health information to others seems so ideal for as much as you are doing for us on this site daily... I became a Nurse Practitioner because I knew that at some point my body would "wear out"... the WEGS hit before I was done and made me postpone school for about a year, but it got done... Perhaps your knowledge and experiences both as a practitioner and a WEGS and your spiritual view on life have brought you to a new place... What ever you decide - you are one in a million... I think that you are gaining experience, not losing years... I always warn people to watch out for what they ask for - patience was mine - hah!! I keep treading on 3 days week for work - ? able to go back to Full time? I do not know... perhaps....
No matter what - best of everything that is good in the world delivered to you....

[Sangye]

Thanks, Nancy. I actually don't regret having Wegs, as it's changed me for the better. And I don't even have hopes of getting my old body back or working the same way I did before. I'd just like a break in the relentlessness so that I can build up a bit and see what my choices are. It's hard to sustain hope when you keep getting pushed backwards.

[me2]

Sangye,
I can't read about your suffering without deep feelings welling up. You have been such a great blessing to so many here and so many here can relate to what you are saying as only we who with the same situation can. I'm reminded of a quote from a science fiction book I read wayyyy back in high school. "Shared pain is decreased and shared joy is increased" (From Callahans Cross-time Saloon)

I'll leave with a joke I heard recently and thought of you.
What did the Buddhist say to the hot dog vendor at the ball park?... Can you make me One with Everything?

[jola57]

Dear Sangye, if warm thoughts could travel, you would now have a housefull. Keep well and be truly happy.

[Sangye]

Thanks you guys. I appreciate the giggles and kindness you send. They always arrive right on time.

[Brooke]

I hope your mind and body start to feel better soon Sangye. You can vent anytime and we are all here to listen! Just wanted to let you know that I am very thankful for everything you have helped me with! Fall is also my favorite time of year!

[Sangye]

One of the major problems I've been having since the vertigo/ hearing loss thing hit in July is huge amounts of fluid retention in my legs. It's way beyond the normal terrible amount I get and diuretics weren't touching it.

A few days ago I realized I had stopped taking a particular supplement when the vertigo hit. It comes in a powder form and isn't as easy to remember as the supplements in pill form. I actually remembered a few weeks ago but either kept putting it off or forgetting again. I restarted it several days ago, and lo and behold, the fluid in my legs went back to its usual troublesome-but-not-horrific amount. It's an enormous objective change. I never would have guessed that this supplement was having an effect on the fluid. It's an antioxidant and anti-inflammatory. I haven't changed anything else and only figured this out because I keep my daily log of symptoms, that also includes which supplements and meds I take.

I do know that taking daily fish oil decreases my general inflammation so much that I can take less pred. I feel the difference if I forget to take it.