Sangye's Status

[DEE]

:hug3:take care of you Sangye

[Brooke]

Hi Sangye - I would be mad too about the phlebotomist being sick and then coughing all over you, how annoying!!!
Good to hear you are on 5 mg of steroids! I had swelling in my right lower leg so the doc ordered a doppler since I have a history of a blood clot in that leg. No blood clot, but the swelling definately goes down when I wear my tet hose stocking. Do you have one of those? I know there are a lot of different kinds, mine go up to my knee.
I hope you get to feeling better, try not to stress too much! :biggrin1:

[Doug]

I'm mad for you, Sangye! I know there are only so many people available to do jobs, but it is neglegent to allow ill people around people with compromised immune systems. The least she could have done is wear a mask (for what good they do) to trap the coughs. I expect the JH people will get a blast that singes the hair off their heads over this one! Go get 'em!

[drz]

I'm really sick today. The woman who drew my blood yesterday had an obvious cold. She's not a very polite person on a good day. She was open-mouthed coughing all over me! You know how close they have to stand to draw blood, and taking my blood takes a long time. I tried not to breathe much, but it went on for awhile. So surprise-- in the middle of the night I got a sore throat that has now gone crazy. My whole face is swollen. My eyes are almost swollen shut. I feel unbelievably weak. I'm going to call the office manager there today and raise a little hell. It's the phlebotomist in the Vasculitis Center, so all the patients are immune-compromised. The lab is tiny-- about 7 ft x 7 ft, meaning any germs accumulate in there pretty fast. There's only one phlebotomist there at once (only one could fit), so it's not like I had a choice. I am just furious about this. Who needs Typhoid Mary in a blood lab? :angry:

I probably won't be on much today. Thanks for the comments above-- I'll have to get back to them later.

Why wasn't she wearing a mask. I wear one in those situations since most clinics and hospital offer them at door.

What happens when we catch a cold or flu? What treatment do we need.?

[Jack]

What happens when we catch a cold or flu? What treatment do we need.?
It is a very individual thing. I've never had flu, but I've had the odd cold and it has been no worse than before Wegener's so I have not taken anything for it. On the other hand Sangye seems to be suffering bad.

[elephant]

Sangye take good care of yourself and glad you are calling them to let them know how negligent they were. That should be protocol...wearing a mask if your sick or don't even come to work!

[Sangye]

I'm feeling better this evening. Still pretty bad headache and wiped out. But I'm not congested and my throat is better. The edema is running amok, though. It's gotta be adrenals causing it.

I sent an email to Dr Seo's receptionist asking for the office manager's number. I told her what happened and how sick I got. She sent it on to Dr Seo. That phlebetomist is a difficult person, so maybe there's more going on that he needs to deal with.

[elephant]

Glad you are feeling better. Sleep good tonight.

[marta]

phlebetomist - say that three times fast. Maybe that's why the person is angry, cuz people get to officially call him a phlebetomist. :predrage:

I hope you're feeling better. It sounded like it on another thread, and I'm happy to hear that. Take care and raise some $#!? with the unprofessionalism issue when you get stronger. Remember... the iatrogenic diseases stat you posted a while back - every little bit of detection/correction helps, and Lord knows we don't want to be just another number in that stat, so you go girl.

[me2]

Sangye I hope you get even better soon. I'm sorry you had to suffer such unprofessionalism.
It is rare for me to get angry but recently I was at the medical center where I have been getting treatment for over thirty years and I had to request percocet for the Cytoxan infusion I was getting that day. I have been getting this prescription for the couple of months I have been getting infusions. I get a HORRIBLE headache with the infusion and the percocet really helps. Nothing else touches it. They told me the doctor was out but they would leave a message for him and he would get back to me in four days. I explained that I was getting my infusion TODAY and four days later would be way too late.
Oh we are sorry but the other doctor here won't write the prescription, your regular doctor will have to do it.
You just told me he wont be here for four days.
Yes , thats right.

Well, I came unglued. Outwardly I was pretty calm but I was just so mad and frustrated at the run around. I said "So you all are just going to let me get my infusion and then go home and suffer?" "I can do it but it is pretty sensless since every other time I have been given the prescription"
"So you are ok with just booting me out and letting me suffer for no real reason???"
The story is somewhat longer but the result was that miracle of miracles I was able to get the prescription. (and boy did I need it , I got so sick and in so much pain. The percocet was a life saver)
It just mad me so much madder that I HAD to get mad to get the right thing done. I like being a nice person. Sometimes nice doesn't get the job done. I mean actually I was not mean and I didn't make any personal attack, but if I hadn't gotten a little mad and mouthy I would have been sent home to suffer in agony and they would have gone home and slept like babies thinking they did a great job that day.

[elephant]

Good for you Me2, glad you did what you did! In a hospital setting you really have to watch out for yourself. As a RN I had to get mouthy with a couple of doctors because of negligence and I hated doing it but I had too. After those incidents they respected me and knew not to mess with me and my patients!

[Sangye]

I'm glad you stood up for yourself, me2. "Nice" is great unless it means you're going to suffer needlessly. Happy you made it through another infusion and that you have a drug that can help with your headaches.

[Sangye]

Well I don't know how it happened, but whatever bug that was yesterday only lasted one day. I have no signs of it at all today. I jumped on it pretty fast with vitamin C, so I guess that did it. Still, how could it be?

[me2]

Thanks for the support you all. It gets pretty lonely sometimes.
Hey Sangye I'm so glad your bug jumped ship so fast. I would have said "Ah, that can't happen" but I have had that happen a couple of times in my own life. It is strange indeed but thats the kind of strange we need more of.

[RCOSSIO]

Sangye..next time PUNCH YOUR PHLEBOTOMIST SQUARE IN THE JAW...you would think that the clinic would have sent her home!

[Sangye]

LOL-- Richard, it's a testament to my monastic training that I didn't do that. And it's a testament to how far I have to go on this path to realize how much I wanted to do it! :laugh:

Me2, I know--it's really bizarre. I wasn't just a little sick, I was WAY sick. And then, poof! I'd never used the particular brand of vitamin C I took. Maybe that was Factor X.

[elephant]

I'll have what Sangye is having ( Vit C) !

[marta]

So Sangye, the question on everyone's mind, what was the brand of your new Vitamin C?

[Lightwarrior]

So Sangye, the question on everyone's mind, what was the brand of your new Vitamin C?

Do tell Sangye, I've been craving orange juice (and grapefruit juice, not a good mix with my synthroid)

[Sangye]

Biotics-- it's a brand you can only buy through health care providers. It has a better quality of the other nutrients that occur with vitamin C in nature.

[jola57]

Vitamin C to the rescue, glad you are feeling better

[elephant]

Sangye how are you doing? Is the vertigo gone yet? How much pred are you on?

[Sangye]

I still have the swirliness from the vertigo. It's gotten a bit better as I've decreased the pred, though. I'm down to 5mg pred. I was at 4mg for several days but just not doing okay--extreme weakness every day. My adrenals weren't kicking in at all. :sad:

I've also been feeling really down about ever working again with these constant setbacks. This one little inner ear virus that hit July 5 is still wreaking havoc 3 months later! Looking over my daily log of symptoms, I see that just 4 months ago I was able to do way more than I can now. I've never been able to see slow but steady improvement, not once in the 4+ years since diagnosis. The uncertainty about working again is really getting to me. If I knew I couldn't, I would grieve it and accept it. Constantly hoping and getting my hopes dashed is so painful.

It's fall--one of my favorite seasons. People are going for walks, riding bikes, or just sitting in the sun enjoying the weather. I haven't been able to do any of that in over 5 years. I'm having a hard time with that these days. I'm not just losing months at this point, I'm losing years.

Thanks for letting me vent.

[pberggren1]

I still have the swirliness from the vertigo. It's gotten a bit better as I've decreased the pred, though. I'm down to 5mg pred. I was at 4mg for several days but just not doing okay--extreme weakness every day. My adrenals weren't kicking in at all. :sad:

I've also been feeling really down about ever working again with these constant setbacks. This one little inner ear virus that hit July 5 is still wreaking havoc 3 months later! Looking over my daily log of symptoms, I see that just 4 months ago I was able to do way more than I can now. I've never been able to see slow but steady improvement, not once in the 4+ years since diagnosis. The uncertainty about working again is really getting to me. If I knew I couldn't, I would grieve it and accept it. Constantly hoping and getting my hopes dashed is so painful.

It's fall--one of my favorite seasons. People are going for walks, riding bikes, or just sitting in the sun enjoying the weather. I haven't been able to do any of that in over 5 years. I'm having a hard time with that these days. I'm not just losing months at this point, I'm losing years.

Thanks for letting me vent.

I know what you mean Sangye. I see many of my friends married with kids and I sometimes wish I did not have Wegs so I could have a family of my own too.

[Jack]

I know how you feel Sangye, any progress is painfully slow and the prospect of things getting significantly better seems remote. However, in your case, I think you should still have plenty of hope that you will get through this and achieve a more acceptable condition. You don't seem to have too much in the way of permanent damage other than perhaps lungs and all the other stuff should be treatable. Yes, I know that you have not had much luck in that direction, especially recently, but I would hope that the edema and vertigo could be cured in time.

Sorry if any of that misreads your condition, but that is the impression I get from this end of your posts. ;)

[elephant]

Sangye you need to vent, and so glad you did. Take your time with the Prednisone. I am taking 6 1/2 mg of prednisone, if things work out I will be taking 6 mg Nov 1. I understand about the work thing, I can't even go back as a Clinical RN. Your so talented Sangye, I hope you will go back to work...if that is not possible, maybe working on line as a consultant or writing a health book. I admire you strength and the way you help people on this forum even when your feeling like crapola! Big, Huge elephant hugs!:hug3:

[DEE]

Sangye know were you are coming from i keep saying when i go back to work ! can managed to stay awake all day some days but its the thought that i can keeps me going
please take care of you and thank you for helping us DEE x :hug2:

[Lightwarrior]

Oh Sangye, yearning for what we used to be able to take for granted is difficult. I am glad that you (we) can vent in a safe place. A lot of what Wegners robs us of is our mental well-being. Our ability to live normally and our lack of being able to predict when the next set back will be. Fall is one of my favorite times of year also. I am sending you light and energy and the hope that your path be lighter in the days ahead.

[JanW]

Sangye - we are here for you.

[freakyschizogirl]

Sangye, You're hear for all of us with your valuable advice.

You've saved me enough times in the past few months!

Its the hope that keeps ya going. I love fall too. I dislike extremes of any weather so fall and spring are my faves.

Keep up your spirits Sangye and although you're not working you help each of us every day.

[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 - :hug1:

[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. :smile1:

[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!:biggrin1:

[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. :rolleyes1: 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.

[elephant]

That is great news Sangye, so is the antioxidant and anti-flammatory fish oil that decreased you fluid intake? Or some other element in the product that you took?

[Sangye]

I take fish oil (which is anti-inflammatory) in addition to this other supplement. I've been taking the fish oil all along. I'm sure it makes a difference with the general fluid retention I have that is due to inflammation, but I still had the huge fluid even while taking it. The big change was due to the other supplement. For me, both are essential.

Though I have confidence in the supplements I take, I really love having objective proof of their efficacy.

[elephant]

Nutrients have a profound effect on our body. I guess it's a mystery regarding the certain element that is helping you out ( supplement). So glad it is working for you!:hug3:

[Sangye]

LOL No, it's not a mystery! The supplement is superoxide dismutase (SOD), which is a known antioxidant and anti-inflammatory. It's an enzyme found mostly in liver.

[elephant]

So eating liver would help or is it so concentrated that we can't possibly consume that much liver?

[Sangye]

You couldn't eat enough liver to get this one enzyme. Also, liver contains numerous other nutrients, some of which I specifically don't want to increase (eg vitamin A).

At any rate, I don't recommend eating liver. If it were 80 years ago, I'd say it was a very healthy food. But given that it's a detoxifying organ, it's not healthy anymore. This is one reason why I only use high quality supplements. OTC and health food store brands don't purify their supplements properly. If you got something that came from liver, it's likely that it would contain toxins found in that liver. Certainly nothing as toxic as a pharmaceutical drug (I'm not exaggerating) but we don't need any more toxins in our bodies.

[elephant]

:flapper:That make sense, that is one reason why I don't eat liver. I actually am one of the weird ones who likes liver and onions.

[Sangye]

:blink: Blech to both liver and onions!

[marta]

:flapper:That make sense, that is one reason why I don't eat liver. I actually am one of the weird ones who likes liver and onions.

You and me both elephant. I love all the organs - being brought up in Bulgaria and all - except for brains, could never eat brains. It's a huge delicacy, but I can't do it.

[pberggren1]

My dad used to cook my liver, onions, and bacon at the farm. YUMMY!!!

[marta]

YOUR liver? YUMMY? hmmmmmm

[Geoff]

Phil,

There's a guy at the door for you....says his name's Hanniball??:flapper:

[elephant]

You guys are making me roll on the floor and laughing!:lol:

[Sangye]

LOL-- Me, too! (Hey, can someone get Elephant and me off the floor? Kinda dusty down here.... :laugh: )

[pberggren1]

Just call me Dr. Lecter.

[Jack]

Sangye - A while back you told us that you had bought a pedal exerciser, was it any good and do you still use it or has it ended up in the cupboard?

I'm staying at my sister's house at the moment and she is looking after me too well! Because I am using them less, my legs are getting more and more stiff whereas at home alone they were improving with use. This made me think that I must do something more about exercise. Another idea was to put an alarm clock set for 1 hour on the other side of the room so that I would have to get up regularly.

[elephant]

Sounds good Jack, make sure it's loud and annoying. :)

[Sangye]

LOL! I was just thinking of asking you about that yesterday, Jack. Yes, I still use it. I went several weeks without being able to--either due to vertigo or weakness. I've been trying to again. It does make a big difference, even when I can only go at a ridiculously slow pace. Any movement is good.

I thought I'd poke you again to try aquatic exercise. It could help you get stronger so much faster without risking a fall or a break. Splish-splash?

[Jack]

Thanks Sangye, I shall get one and I'll just pretend I didn't read the bit about swimming. ;)
(My sister is telling me to do it now! :mad1:)

[Sangye]

Your sister is telling you to try the pool?

[Jack]

Yes. She agrees with you! :(

Her daughter has a few problems and finds it very good for her. She swims regularly.

[jola57]

Is that your big sister (age not size LOL)?

[Jack]

Yes. (to both! ;) ) So I have to do as I'm told.

[elephant]

Have fun in the pool Jack! My sister has RA and that is the only exercise she can do.

[pberggren1]

I hate pools. If I was the only one ever using it it would be OK, but the thought of other gross people using the same pool grosses me out.

[Sangye]

Jack, give it a try. I guarantee as soon as you get in and see how much you can do without pain, you'll be hooked.

Phil, you're a study in contrasts. :laugh:

[pberggren1]

Jack, give it a try. I guarantee as soon as you get in and see how much you can do without pain, you'll be hooked.

Phil, you're a study in contrasts. :laugh:

Oh heck, I'm a study period!:wink1:

[jola57]

On so many levels Phil, you are a marvel :wink1:

[Fran]

Hello Sangye, Just to say I think of you and wish you wellhttp://www.wegeners-granulomatosis.com/forum/images/editor/smilie.png (javascript://)http://www.wegeners-granulomatosis.com/forum/images/editor/smilie.png (javascript://)

[Sangye]

Thank you, Fran. I'm doing okay. :smile1:

[Fran]

Sangye, Wishing you a very happy birthday x

Fran

[Sangye]

Thanks, Fran! Always glad to make it to another one. :smile1:

[drz]

Thanks, Fran! Always glad to make it to another one. :smile1:

TMB is one thing I enjoy having.

[Fran]

You can say that again, especially at my age - Hope you have an enjoyable day ! http://www.wegeners-granulomatosis.com/forum/images/editor/smilie.png (javascript://)http://www.wegeners-granulomatosis.com/forum/images/editor/smilie.png (javascript://)

[Sangye]

What's TMB? Too Many Birthdays? Or Ten Magic Beans?

[drz]

What's TMB? Too Many Birthdays? Or Ten Magic Beans?

Do you have any magic beans? Happy Birthday!

[Sangye]

Thank you-- tomorrow is TMB (Technically My Birthday). I don't currently have any magic beans, but since they're your favorite thing I'll find some before your next birthday. :tongue1:

[julia]

Happy Birthday!

[brocky99]

Happy Birthday hope you have a good day tomorrow xx

[DEE]

Happy Birthday

[Jack]

Happy Birthday!

http://dingo.care2.com/photos/2/2150a.jpg

[JanW]

Happy Birthday, Sangye!

[me2]

Happy birthday Sangye!! I will send you the cake coupons that come on the back of my prednisone bottles. Oh, no wait, I need those. I'll think of something else.

[Sangye]

Thanks everyone! Love that picture of a stupa, Jack. Do you know where it is? It looks familiar.

Hey Kirk, you get CAKE coupons on your pred bottles? I only get free oil change coupons on mine. Crummy insurance plan! :biggrin1:

[marta]

Happy Birthday oh wise one. And many many many more.

[Psyborg]

Happy Birthday to you :)

[Jack]

The text that went with the image says -

Swayambhu, a Kathmandu valley landmark, is an ancient Buddhist stupa perched on top of a hill. On top of the stupa, Buddha's eyes watch over Kathmandu valley and its inhabitants.

I thought he could watch over you too. :)

[Sangye]

Cool! I'd love to travel to Nepal someday. I've met a lot of Nepalese since moving to Maryland-- all very kind people. I'd like to visit Nepal, Bhutan and India, actually. (Tibet would be too heartbreaking to see at this point.) It's probably an unreasonable wish, but it's something I keep in the back of my mind.

[elephant]

Happy Birthday Sangye! Hope your friends bring you some yummy comfort food!

[janNaz]

Sangye....wishing you a Happy Birthday!

[Deanne Hull]

Happy Birthday , I hope you had a lovely day

[pberggren1]

Happy Birthday Sangye! 39 and holding?

[Terri]

Happy Birthday to you****Happy Birthday to you****Happy Birthday my weggie friend*****
Happy Birthday to you! (and many more):biggrin1::hug3:

[Sangye]

Happy Birthday Sangye! 39 and holding?
LOL Nope-- 47.

I heard an interviewer ask John Cleese his age a few years ago. He said, "68, nearly dead." LOL

[Sangye]

Thanks for all the birthday wishes, everyone. It was really sweet of you! :smile1:

[ScreaminMeanie]

Just saw this - a big (almost belated) Happy Birthday to you, and I hope you had a great day!

[Sangye]

LOL Don't worry about it being belated. It's pre-lated 'cause my birthday is tomorrow! :biggrin1:

[Momof3]

Happy Birthday, thank you for being such an active part of this site, you are wise and helpful (and funny). Enjoy your special day.

[sadpixie]

Happy Birthday!

[Sangye]

Thank you!

[Dumpy]

Happy Birthday Sangye !!! Thank you for being here you are one that makes everyone feel like they belong.

[Sangye]

Aww, thanks Dumpy. How are you doing these days? Everything still good?

[Dumpy]

Not real sure right now. The week of Thansgiving I started having real bad joint pain in both knees and my left shoulder. I went to an Orthopedic doctor and he was thinking Rheumatoid Arthritis and he wanted me to go to see a Rhuematoligist. I decided at that point to call my pulmanoligist (he is the doc that has been taking care if me). I went and had blood test, urine test and x-rays yesterday. I have an appointment to see my Doc Mon. and he jumped me back on 40 mg preds. Hopefully we can catch it by the tail before it gets to far.
Thanks for asking.

[Sangye]

It sounds like a flare, but it also sounds like you're catching it before it takes off. I hope they can figure it out quickly and it doesn't take much to get the Wegs dog back to sleep.

[Dumpy]

I'll let you know how it comes out. I knew when the Orthopedic docs nurse told me that my sed rate was at 102 I needed to get in quick because it had been cruising at 17 are 18 for a good while.

[Sangye]

Whoa, 102. Yeah, time for help! :ohmy:

[Jack]

There is definitely something going on there that needs checking out.

[JanW]

Yep, that's way up there -- glad you're being seen to!

[LisaMarie]

HAPPY BIRTHDAY HOPE U HAVE A GREAT DAY!!!!!!!!!!:w00t:

[jola57]

Many happy returns of the day and all the positive vibes to center only positive thoughts throughout the year.

[Sangye]

LOL "Many happy returns" is an inside joke among Buddhists. Get it? :biggrin1:

[Jack]

791

Is there a Buddhist comedy circuit? ;)

[Sangye]

There should be! A couple of our sangha members are the funniest people I've ever met. I'm funny, but not even in the same class as them.

[elephant]

I doubt that Sangye. Your the life of the party!

[MCC]

Oh Sangye, I missed your birthday! Hope you had a great day?

How are you doing now? And everyone else? Sorry I haven't been around x

[Sangye]

Thanks Mandy :smile1:

Update from my appt with Dr Seo yesterday....
- Some old Wegs symptoms are creeping back. We did labs. If the rtx is starting to wear off, we'll re-treat based on symptoms and inflammatory markers. He wants to use rtx as infrequently as possible, so it's a delicate balance of allowing the Wegs to wake up a bit but not go wild. None of my symptoms are saying "Re-treat right now."

- We'll use the 2-dose protocol next time instead of the 4-dose. They're finding it works just as well. Since the treatments totally flatten me for 6 wks, he hopes I'll tolerate the shorter protocol better.

- Sleep Study-- no sleep apnea, but did show "Restless legs syndrome." (I had to stifle a major laugh about that) I see the sleep doc next week to discuss the results, and he'll decide if we should repeat the study. I'm trying not to get upset about the results until I see the doc. While I don't want sleep apnea, I was really hoping for an answer to the intense fatigue and leg edema. :sad:

- Having nosebleeds which are new for me. Not likely Wegs--more likely a leaking blood vessel that needs to be cauterized. Gotta see my Wegs ENT so he can look waaaay up in there. They're intermittent so I'm not sure what he'll find. Not urgent.

- Both Dr Seo and I are very frustrated at my inability to exercise on land. Will see my physiatrist again for her recommendations.

- Will see an endocrinologist since my adrenals don't seem to be functioning well, even with pred. It's been this way since I was first treated with pred in 2006. It's not getting better and is a major obstacle to recovering.

- It's been 4.5 yrs since I was able to work. Between physical and mental (ie foggy thinking, poor memory) limitations, I can't even picture working as a chiropractor again. Dr Seo believes I'll be able to again. He said he looks forward to that day. I thought that was really sweet. Meanwhile, I'm renewing my Arizona license so I don't lose it permanently. He was really happy about that decision.

I think that's about it!

[elephant]

Glad you hear you are renewing your license, you will go back someday.
Glad you are seeing the ENT about the nose bleeds to rule out WG, Weak blood vessel or just plain dry up north ( nose).
I was wondering when is the plan to do the RTX? Or are you just going to wait and see if other WG symtoms come up?

[Sangye]

I don't plan to return to Arizona, but it's not good to lose a license-- hard to get it back. If I do practice in Maryland someday, it helps to have an active license from another state. And there is the Hope factor. The thought of losing the license is depressing to me and makes it harder to imagine I'll ever work again. It's a lot of money to maintain the license, but sometimes you just have to invest in keeping hope alive.

If my labs show that the rtx is fading and my inflammatory markers are rising, we'll do rtx sooner. If they only show rtx wearing off, we'll go by my symptoms. When symptoms (eg jt pain and stiffness) become more than I can handle or they start to accelerate, we'll re-treat at that point.