Five Years in Weggie Land

[Sangye]

Today is 5 years since I was dx'ed. Lots of mixed emotions about it of course. (It's also 5 years since I was able to work, so that goes into the pot of emotions.)

Emotionally I'm on a teeter-totter. Wegs has allowed me to change in ways that I wouldn't/ couldn't have before. I like this person better-- on the inside at least-- but I struggle to accept the outer changes and still feel like someone stole my body. I'm grateful for the rtx and dismayed that it weakens me so much, and that I have to go through that every 6 months. Wishing I could get some strength back while learning to surrender to what strength I do have. It's all there in the pot. :smile1:

[Chris G]

Have you had an improvement since your infusions have ended?

[Psyborg]

I hope that your body starts to recover Sangye, but it is great that you are able to see some positives in all of this. It's only a year for me, and it's been a weird one, you and the "elders" here on the forum have been an invaluable source of information.

[watersedge]

Sangye,
It must be hard for you at times, you are always there for everybody on the forum, you reply to everybody, give advice and encouragement and have a kind word for all even though you have your own good and bad days and ups and downs with wegeners.
You are so appreciated.
Five years is a long time, it is bound to get on top of you at times, you have a lot to deal with. Hope you feel stronger and don't worry about your appearance, you are a beautiful person on the inside.

[Jack]

Happy 5th Sangye! :thumbsup:

More seriously, I think you drew one of the shortest straws when the disease was being handed out and I would do anything to give you some sort of break from it or even some good strong indicators of progress. It seems like it never lets up for you and although I have quite a few bad days myself I still have plenty of good ones to look back on.

Hope the next 5 years bring an improvement.

[julia]

Thankful for all your knowledge. Hope things get better. Maybe they will come up with something that will alleviate your side effects.

[elephant]

Sangye, the good thing is that the RTX is keep you in remission, it is too bad it makes you feel like crap after you take it. I am thankful for your hard work and dedication to us who are suffering and need your advise. You are a great gift!

[Sangye]

Thanks everyone. I had a really good day. I'm barely-sorta-kinda starting to feel a bit better. But we had a lot scheduled at our temple today, starting early and ending late. I knew it was gonna be a very long and physically demanding day so I took 2 extra mgs of pred and had a cup of coffee this morning. LOL (I rarely have caffeine. If I have a cup of tea it makes my adrenals crash within the hour.) I'll definitely pay a price for the extra pred, the caffeine hit and the huge amount of physical energy I used today, but it was totally worth it. I can spend the next few days in bed as much as I need. I decided I could feel the grief and sadness of today while celebrating the good stuff. So that's what I did.

Thanks for all your kind messages. It was wonderful to come home to that. :smile1:

[vdub]

5 years.... Like someone else said, you do a lot for this forum -- answer a lot of question, give encouragement, and, of course, sympathy. You're one in a million -- just like our disease. :-)

[Sangye]

LOL Thanks, vdub! :laugh:

[NicShaf]

Happy 5th Sangye! I hope the next 5 years turn around for you and we are celebrating great improvements and remission next time around:)

I couldn't agree more with what everyone has said above. You are so compassionate and helpful to everyone here. Thanks for helping keep us all afloat!

[renidrag]

I hope things turn around soon for you Sangye. I look forward to reading your posts because they will be positive and truthful. For those who have suffered this disease, you, my friend have been the rock.
Dale

[Sangye]

Thanks Nicole and Dale. Your words brought tears to my eyes. It is a huge counterbalance to the suffering of Wegs to know that something good can come of it.

[mishb]

Your words brought tears to my eyes. It is a huge counterbalance to the suffering of Wegs to know that something good can come of it.

Wow, there has been many a times on here that your suffering has bought tears to me eyes, I can't believe you have had to go through 5 years of your pains.
I 2nd, 3rd and 4th everything that everyone has said, that without your knowledge and also your profession, many of us would have been lost. I found this sight by googling anti inflammatory diets, and after I read many post from you (and also Jack), seems like years ago now, I decided to become a member. Without you and the others, I still would have been one of those fearful of what this disease can do, but your advice and, I'm sorry to say, experience has shown that things can be different for everyone.

....anyhow, Happy 5th anniversary and I truly pray that you don't have many more of them.

[pberggren1]

Thanks Nicole and Dale. Your words brought tears to my eyes. It is a huge counterbalance to the suffering of Wegs to know that something good can come of it.

You are living proof of just that.

[MCC]

Hugs Sangye. Thank you for all you do to help everyone on here xx

[BrianR]

Hey Sangye. I won't repeat all that everyone else has already said other than to say...my sentiments exactly! I think and hope that things will steadily improve for you over the next 50 or so years you have left on this planet.

Brian

[Sangye]

Thanks you guys. Wouldn't it be great if in 5 years we could all say, "Wegs? GPA? Nah, they finally figured out how to cure it." And then the cure turned out to be... CHOCOLATE???!!! :w00t:

[marta]

Hey Sangye, I'm going to start working on your hypothesis on the chocolate.....oh wait, I've already started.

Happy 5th. I hope that they figure things out in no time with your complications, and that your dream of the future comes true. It is thanks to you that I made the connection between the H1N1 and my new life long partner - love your scientific brain. Thanks for all the help and encouragement you have given me and so many others.

[JanW]

Thanks for everything Sangye. You've been a wonderful online friend and companion through this 'thing of ours' as we'd say in NJ!

[Sangye]

Thanks, you two. :smile1:

[Brooke]

Hi Sangye, happy 5 years being a weggie! I too agree with everyone else! You have helped so many people on this forum.
I hope you start feeling better really soon!!

[Sangye]

Thanks, Brooke. :smile1:

[NicShaf]

Thanks you guys. Wouldn't it be great if in 5 years we could all say, "Wegs? GPA? Nah, they finally figured out how to cure it." And then the cure turned out to be... CHOCOLATE???!!! :w00t:


Where do I send my money to continue this research? :)

[Sangye]

ROTFL Oh man, that got me laughing! http://www.smileyhut.com/laughing/rofl.gif (http://www.smileyhut.com)

[Kathie28]

I think you are very entitled to having some emotional moments after dealing with so much for 5 years. You are such a strong person and I'm very greatful for all you do for everyone on this site. I know I find myself personally hunting for your answers to questions. I consider you to me one of the most knowledgable people about this disease. Thanks for all you do and I do hope relief is around the bend for you.

[sadpixie]

I don't post much but try to read a bit here every day. Your posts have been a wealth of knowledge for me throughout these past few months. Thank you for everything you do.

[Sangye]

Thanks guys, it does make me feel better every day to help others, even when I don't feel good physically or emotionally.

[chrisTIn@]

Congratulations with living with and fighting this disease for five years already. You handle your own case very good, and help others with your postings.
I hope you 'll soon feel better physically too, Sangye. Good luck to you! :smile1:

[Sangye]

Thanks, christTin@. :smile1:

[RCOSSIO]

It would not be right if the Cuban did not pipe in and say....Happy 5th you &^%$#$#% Wegeners :predrage:

[Sangye]

LOL Richard, how can you refer to your BFF like that! :laugh: