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GeorgiaInOhio
08-27-2009, 11:40 AM
Hey, havent been on in awhile. Trying to do my own thing and live life. Just thought the forums were getting a bit too negative for me, and I needed a break. Been working on feeling out the way my body works, and actually, have been improving quite a bit. I still believe boosting my immune system is the only way to beat this and so far, its working. My vasculitus is getting better, leg cramps are practically gone, energy is up, and my overall well being has improved. I see the specialist next month and im hoping to not only lower my prednisone, but avoid the cytoxin all together. My family doctor is amazed at how well im doing. All my blood work is normal, and i avoided taking a huge round of antibiotics when i had a vasculitus flare up. Just took care of it myself with topical treatments and didnt have to run those pesky antibiotics thru me. I truley believe there is a cure, and im still on the search... I know everyone is different and you have to know your body. I know mine. I will beat this. Sorry if I dont come on much, just need to stay away from being told what im doing is wrong. I appreciate the help, but no one has an answer, and no one is the same. We should all be positive and never accept that we have to face life with "a new normal", its a "temporary normal". Take care everyone!

Doug
08-27-2009, 02:07 PM
Any advice given on this forum is meant in the best spirit, and reflects our best knowledge of this disease. If telling you there are no studies supporting a holistic approach to WG care seems negative, the risk to your life for ignoring it fits into a 95%/will harm, 5%/won't harm range now. (Those numbers probably are wildly off- to me 100% holistic is harmful, but that's because there's no supporting studies. With supporting studies, perhaps a blend of traditional and nontraditional approaches will work best- that's your "search for a cure" zone, as I recall things you've tried or wanted to try.) Perhaps the two, three weggie deaths in the period just before and after you came on the forum draw a cloud of precaution over our remarks, too. No matter how positive a person is- I feel I am very positive, but not giddily so- the fact remains, about 8% of weggies don't survive that two year mark (whatever that means). Perhaps you did the very thing you should do if you feel the forum is holding you back and down, but know that you always will be welcome back with your news. Who knows? With your will, your very positive attitude, isn't a lot possible? :):) (I'm not telling you to stop doing anything you want to try or trying to hold you back or be negative, but I am one of the people who hopes you go into the forest armed for all contingencies because Wegener's is a killer.)

AshleySparklez
08-27-2009, 02:10 PM
Hi Georgia In Ohio!
I'm new to the forums.
What have you been doing that's different? I'd love to know!
Glad to read things are as well! :)

Doug
08-27-2009, 02:23 PM
Ashley, you'll find a lot of Georgia's contributions in the "New Member Introductions" and "General WG Chat" categories. Go first to "Home", then select the two categories above. You'll have to do so searching, but this is a good way to get not only her comments but the responses, which, as you've read, mostly discouraged her from trying holistic medicine of one sort or another. She also mentions things she tried that helped her deal with WG issues. Her avatar is distinctive, so you shouldn't have any difficulty finding them. Or skipping the negative comments, if you chose.:)

AshleySparklez
08-27-2009, 02:27 PM
Thanks Doug, I'll try searching right now!! :)
Hope all is well! :D

Doug
08-27-2009, 02:35 PM
I'm in remission, so you know I feel pretty spunky just now!

Jack
08-27-2009, 03:44 PM
A positive attitude is 50% of the answer to many diseases, I've seen at least a couple of people die through their lack of it :( . For this reason alone, I would not stand in the way of anyone trying an alternative approach, but they must be aware of the statistics. This disease had a near 100% fatality rate before the current chemo / steroid treatment regime was discovered.

jola57
08-27-2009, 04:32 PM
Georgia, good luck in keeping in remission for as long as you can. Who knows what our bodies are capable of, you may be one of the very few that stay in remission for a long time. Do not forget however that is was the dreaded mainstream meds that helped you to where you are now.

andrew
08-27-2009, 07:55 PM
Well Georgia, no one can accuse you of not being positive :-)

I do hope you continue to feel better. Know that advice on this forum is given with the best intentions and with your best interests in mind. No one knows more than us Weggies that everyone is different so I think I speak for everyone when I say that your continued wellbeing is important to us.

Continue to feel better and please, if you feel like it, report back and let us know your progress!

crackers
08-27-2009, 08:42 PM
georgia i wish you well with your quest.please keep in touch.
john.

GeorgiaInOhio
08-27-2009, 09:03 PM
Hey everyone, I didnt mean to upset anyone, and I didnt realize saying "negative" came off the way it did. I didnt think anyone had negative advice, I just meant that for me, hearing about people dieing, saying there is no cure, please dont try this and that or youll die, thats just too much for me. No one on here said anything mean or negative, I just think sometimes people are in such pain, and dealing with so much, sometimes its easier to just give up and accept what you have and not try. I know that the meds are helping me, i still take them. I still do what the doctors say. I havent even seen a holistic doctor. Its all about knowing your own body. Im still learning, and i still have bouts with things, but im starting to pick up on what works for me a little better. Im sure I have a long way to go, but im trying to stay positive and just live my life and put wegeners on the side. It seemed like at first, WG had become my only life, and yes, some days it still feels that way. But I think the power of the mind is a wonderful thing and it can move mountains. Positive thinking has alot to do with change, and combine that with medicines that work, knowing what diet your body needs, and figuring out the signs of what "ails" you, this thing is beatable. I truley believe that.

Im sorry if i upset anyone, I type so fast sometimes i dont realize i word things a certain way. Ill be back on from time to time. I came on this morning because i started thinking that post may have sounded like i was signing off, but im not! im still here! I just need to take it slow. Ive got so much going on right anyhow its hard to be online as much as before. I finally have enough energy to work, so Ive been trying to get back on track, yet take it easy at the same time. that is a task let me tell you!

Dont worry, im not going to do anything stupid and stop taking meds and think im super woman. Im going to see the specialist next month and I will do whatever she says i should, no problem. :D

And I will make sure i come back and tell everyone how the visit was and whats going on!

Love you guys!
Take Care!

Sangye
08-27-2009, 11:22 PM
Hi Georgia, everyone on here has the same goals for themselves and for each other: to be healthy, safe and happy.

Being so new to the diagnosis, it can be very easy to judge others for their feelings-- to decide they aren't positive enough and that's why they're so sick. Had I joined a group way back in the beginning (before A LOT of therapy!) I might have done the same. Everyone is doing the best they can. We get to know each other pretty well, but we don't really know the whole story. Some have (or have had) incredibly difficult lives minus the Wegs.

As for my responses to your posts, I make no apology for the intensity with which I advised you (or any Weggie) never to trade medicine for holistic treatment. That may sound harsh to you! However, I have knowledge and training that you do not. How would I feel if I pussyfooted around it and you harmed yourself? It's like seeing a biker headed for a cliff. If the only way to stop them is to throw a stick in the spokes, you do it to save them from the cliff.

So, I hope you never, ever are near any cliffs, and that whatever strategy you decide on works better than you can possibly imagine. Best of luck to you.

Sangye
08-27-2009, 11:24 PM
Ashley, a fast way to find all the posts by a member is to left-click on their name in any post. You can select "Find all posts." There's also a way to do it from the member's info page, but this is fast. Took me longer to figure this out than I care to admit.... :rolleyes:

Doug
08-27-2009, 11:31 PM
Hey! On a mission to remission! You have such a positive attitude about this circumstance in your life that I have no doubt you are in the group that comes out of this alive, better, and in control of the disease. (If anyone took offense, just remind them about Prednisone. Ha!) My new normal is pretty much where I was before WG, with some residual peripheral neuralgia (mostly feet) and a few pills to swallow once a day. I actually take more medication (two pain medications) for the aftermath of shingles than I do for WG. You are younger than me (as I recall) by one to 1-1/2 generations, so I'd think popping back to a level you'd be comfortable with would be more likely than not. That's the story this forum would enjoy hearing you talk about! Nothing like success to encourage others! Take care. :)

Doug
08-27-2009, 11:40 PM
p.s. Well, I was dumber than you, Sangye! It is a bit embarrassing to admit that I was on this forum for several months before curiosity about something else made me aware of the sorting capabilities of this forum. The only bad part about it it you lose the context of the postings when you sort by member since there is a dialogue going on. But, for pure, unadulterated Sangye, or Jack, or John, or Georgia of Ohio, or, well, etc.,
sorting on the member is a great way to get right to the point. Anyway, the sorted entries do note which thread they are from. If context is needed, the curious ones among us can resort on thread, and Doug's concerns are covered. :confused:

GeorgiaInOhio
08-28-2009, 02:33 AM
Hi Georgia, everyone on here has the same goals for themselves and for each other: to be healthy, safe and happy.

Being so new to the diagnosis, it can be very easy to judge others for their feelings-- to decide they aren't positive enough and that's why they're so sick. Had I joined a group way back in the beginning (before A LOT of therapy!) I might have done the same. Everyone is doing the best they can. We get to know each other pretty well, but we don't really know the whole story. Some have (or have had) incredibly difficult lives minus the Wegs.

As for my responses to your posts, I make no apology for the intensity with which I advised you (or any Weggie) never to trade medicine for holistic treatment. That may sound harsh to you! However, I have knowledge and training that you do not. How would I feel if I pussyfooted around it and you harmed yourself? It's like seeing a biker headed for a cliff. If the only way to stop them is to throw a stick in the spokes, you do it to save them from the cliff.

So, I hope you never, ever are near any cliffs, and that whatever strategy you decide on works better than you can possibly imagine. Best of luck to you.


Wow Sangye, I had no intention to offend you but obviously I have. Im sorry. I was actually coming on to write you personally and thank you for the advice you gave me on alot of things, the PB-8 has worked wonders, and alot of other things. I can see you are very upset with me and I didnt direct anything toward you, so whatever i said, it wasnt meant toward anyone in particular at all. and like i said in my last post, I havent even seen a holistic doctor. I have yet to trade any medicine for anything "holitistic" and to be honest, I never really asked for a "holistic" cure, I only ever asked people for natural or holistic remedies for pains and side effects. Personally I think most holistic medicine is a money making scheme and dont trust most of those doctors. I did call a few and after hearing how I needed Hormones of all things, I couldnt see how "holistic" that could be.

Im not judging anyone by their feelings, and I understand people are sick, and I never thought there was an intensity to anything you said. actually, i thought you had alot of great ideas that i put to work, and enjoyed reading your posts. im sorry you feel as though i was judging anyone. I dont know what i said that made that sound that way, but that was not my intention. I merely meant that hearing about all the down sides seemed to be taking over my own personal feelings and i just needed to step away- that has nothing to do with anyone else but me. everyone is different and i was obsorbing way too much of the "im never going to feel any better" and not enough of the "i will get better". I hope you understand what i mean. i dont think i ever said anything about anyone personally on this board and never would. so, again, im sorry that this offended you so much.

thats all i wanted to say.

Luce
08-28-2009, 05:29 AM
This is why I posted my good news because I know we all get a little bogged down in nasty symptoms and side effects.
I wanted to give everyone a little hope and show that the drugs can make all the difference in getting well again.
Although I do understand that I am incredibly lucky to have had a quick diagnosis and youth on my side, as well as plasmapheresis which I feel really gave my recovery a kick start.

Sangye
08-28-2009, 10:25 AM
Georgia, now I totally get what you meant and I totally understand. Thank you for taking the time to clear it up. I was upset-- not just for me, but more at the notion of other members being thought of as pessimistic or negative. I got a little protective of them, I guess!

There's a Buddhist saying, "If you knew the reality of anyone else's life, you'd never stop weeping."

Doug
08-28-2009, 10:29 AM
This is why I posted my good news because I know we all get a little bogged down in nasty symptoms and side effects.
I wanted to give everyone a little hope and show that the drugs can make all the difference in getting well again.
Although I do understand that I am incredibly lucky to have had a quick diagnosis and youth on my side, as well as plasmapheresis which I feel really gave my recovery a kick start.

Plasmapheresis was the thing that brought me out of the woods. Perhaps it's reserved for the worst cases, because it doesn't get mentioned much on the forum.

Sangye
08-28-2009, 10:32 AM
It's never been mentioned for me. I don't think I've heard of it being used unless the kidneys are involved, but I'm not 100% sure

Doug
08-28-2009, 04:19 PM
It's never been mentioned for me. I don't think I've heard of it being used unless the kidneys are involved, but I'm not 100% sure

That's my sense of it, too, though I'm not sure about that either. I did have the kidney involvement.

Jack
08-28-2009, 06:00 PM
I had it when I was in renal failure, but I don't know if it helped at all. I did manage to go for a year without dialysis so perhaps it was responsible.:confused:

Luce
08-28-2009, 06:56 PM
I had it because of the kidney involvement and as I understood it removing the plasma from my blood meant all the antibodies/PR3 already produced were stripped out, effectively resetting me and getting a head start before I started producing any more.

GeorgiaInOhio
08-28-2009, 11:11 PM
Georgia, now I totally get what you meant and I totally understand. Thank you for taking the time to clear it up. I was upset-- not just for me, but more at the notion of other members being thought of as pessimistic or negative. I got a little protective of them, I guess!

There's a Buddhist saying, "If you knew the reality of anyone else's life, you'd never stop weeping."


Im sorry i upset you Sangye, your advice on this board has been so helpful to me, you have no idea. I like the quote, totally true. Your such a sweet person. :D

jola57
09-01-2009, 03:26 AM
Georgia, most of us have our little nagging problems that we air out here, but we also need the positive folk like you to give us those little rays of sunshine.:) I know that I for one would miss you if you've "gone "away. Look beyond our "negative" ventings to the underlying natural need to bond and stay (ha you are still posting so you must like us:D).

GeorgiaInOhio
09-01-2009, 06:34 AM
well of course i do! :D

Doug
09-02-2009, 04:36 AM
:):)
well of course i do! :D

Great! One thing about families: there is a bit of disfunction in the best of regulated ones, so it's always happiest when we can kiss and get back together! Don't think you don't bring an interesting point of view to the forum, because you do, Georgia. If you feel we are stepping back sometimes, maybe it's to gain the perspective needed to appreciate you as you are, which is pretty (I hate to use this over-used word, but it's the best I can do!) awesome!

GeorgiaInOhio
09-02-2009, 10:41 PM
lol, well thanks. nothing like a good ol' fashioned dis-functionally happy family! LMAO!!!