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.

[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!

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.

[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!