New member in Delta, BC

[LisaT]

Hi Lisa,

The support here is what has helped me keep it together the last couple of weeks. Use us, we don't mind. Yes, anxiety is running high in my life right now as it does with most of us at one time or another. I too just started meditating again and releasing negative energy and filling back up with healing energy. Hope that's not too new agey for you.

If you do have calcified lymph nodes in your mediastinum they will not shrink with medication. It's encouraging to hear that your pulmonary nodule has shrunk.

not too new agey at all! Anything that works and gives us hope. I believe a lot in the mind-body connection and our body's innate ability to heal itself -- just not the flips side (ie. I don't believe we've caused our illness or are at fault if we can't cure it). I don't know if what's in my mediastinum is calcified lymph nodes or something else. Is that what you have, if you don't mind my asking? Honestly, at this point I don't even really know what a mediastinum is. I first heard the word this week. Do you know how they do treat it if it's fibrosing mediastinitis? What were your symptoms other than your 'usual' wegener's symptoms? If anything I'm asking is too personal feel free to say so. I'm just starved for information. I really hope there's a good treatment plan for you and that it will remit.

[mishb]

Hi Lisa and welcome to the forum.......or as Don calls it, the best blog place around.

I was diagnosed with RA a year before WG. However my blood did show an high RF reading.
A year after I was diagnosed with WG, then I was falsely diagnosed with T Cell (non-Hodgkin) Lymphoma and then 6 months later was diagnosed with Mixed Connective Tissue Disease. The false diagnosis was all due to inflammation and elevated lymphocytes.

The treatment is all basically the same, so it doesn't matter what label they have put on it.
I take 400mg plaquenil, 20mg MTX and down to 3mg pred.

Take care and I look forward to hearing more from you.

[Alysia]

welcome to the forum, Lisa. I understand how scary it is now, since things are still unknown and the treatment and the docs are still in a question of trust.
now that you are here, you will no longer be alone with all this

[Christina32]

Hi Lisa! I'm just across the water in Victoria! You're the closest person I've found so far. I was diagnosed one year ago. I think if your rheumy and ENT listen well to you and provide or help find the answers you need then they're alright! I've had no luck here finding a WG specialist. I don't believe there is one on the island. My doctors although limited with WG experience do well with asking, listening and keeping up to date with me. You will become your best specialist!! The support and information on this site is awesome!

[windchime]

not too new agey at all! Anything that works and gives us hope. I believe a lot in the mind-body connection and our body's innate ability to heal itself -- just not the flips side (ie. I don't believe we've caused our illness or are at fault if we can't cure it). I don't know if what's in my mediastinum is calcified lymph nodes or something else. Is that what you have, if you don't mind my asking? Honestly, at this point I don't even really know what a mediastinum is. I first heard the word this week. Do you know how they do treat it if it's fibrosing mediastinitis? What were your symptoms other than your 'usual' wegener's symptoms? If anything I'm asking is too personal feel free to say so. I'm just starved for information. I really hope there's a good treatment plan for you and that it will remit.

Lisa I sent you a PM with some information.

[annekat]

delta is half an hour south of Vancouver. Ferries to the island (where Victoria is) leave from close to where I live. My sister and her family are in issaquah, WA. Normally I visit her frequently but I can't cross the border for now until things settle down enough for me to get travel medical insurance... So for now, she comes to me. I know I see the signs for Olympia but haven't paid enough attention. Where is it in relation to Seattle?

Olympia is about 60 miles south of Seattle, 30 miles south of Tacoma, on Interstate 5, at the very southern tip of Puget Sound. I can go to Victoria by ferry from Port Angeles, by traveling up the west shore of the sound. But to get to Delta, I'd take I-5. I'm sorry your traveling is so restricted for seeing your sister. If you ever get to Olympia, I sell pottery at a great farmers market there, and wouldn't be looking for you to buy anything; it's always just nice to meet other Weggies, and you'd enjoy the Market, so check with me. But it sounds like that won't be anytime soon.

[LisaT]

Anne, I love markets and I love pottery! I'd be thrilled to come meet you next time I'm able to go to the U.S. I have yet to meet another person with this disease... And you don't have to 'look' for me to buy anything; I should have listed it in my hobbies how much I love colour, sparkle, art, clothing... I'm trying to get my shopping tendencies under control since I'm not earning a penny and I spend most days lounging around the house. I don't need a fabulous wardrobe for walking my kids to school and the dog around the block. However, I could always use another pottery mug or wine goblet!

[LisaT]

Cristina, I'm surprised you haven't found anyone else in Victoria. I will continue to look for a WG specialist here just in case they have a differing opinion especially on treatment options. It sounds as though the expertise can really vary with respect to stenosis and I definitely don't want to mess around with it. I've already learned so much from the members on this forum. More than from any of the docs. I feel as though they don't want to scare me so they don't tell me everything, which leaves me imagining the worst and probably more scared than I would be if they were just straight with me.

Hi Lisa! I'm just across the water in Victoria! You're the closest person I've found so far. I was diagnosed one year ago. I think if your rheumy and ENT listen well to you and provide or help find the answers you need then they're alright! I've had no luck here finding a WG specialist. I don't believe there is one on the island. My doctors although limited with WG experience do well with asking, listening and keeping up to date with me. You will become your best specialist!! The support and information on this site is awesome!

[annekat]

Anne, I love markets and I love pottery! I'd be thrilled to come meet you next time I'm able to go to the U.S. I have yet to meet another person with this disease... And you don't have to 'look' for me to buy anything; I should have listed it in my hobbies how much I love colour, sparkle, art, clothing... I'm trying to get my shopping tendencies under control since I'm not earning a penny and I spend most days lounging around the house. I don't need a fabulous wardrobe for walking my kids to school and the dog around the block. However, I could always use another pottery mug or wine goblet!

That would be great, Lisa! My mugs are very popular and I'm constantly replacing them when they sell. I don't make wine goblets, unfortunately. I do make some small things that are easy to travel with, such as spoon rests, which are also very popular. I have a long ways to go towards getting good photos of my work, or having a good enough camera to get them. I am picky. But I may be able to scrounge up a couple to post on the forum. Just not right now, as I have to get ready to leave for the Market.

I am generally at the Market on Sat. and Sunday, April through December. I may be there on some Thurs. and Fri., too, but that is not reliable at all so it would be best to check in advance. Hope to meet you some day!

[LisaT]

I'd love to see photos of your work, Anne. I have been looking for the perfect coffee/tea mug for ages. I have lots of mugs but am looking for 'the' mug that has just the right look and feel and is a nice big size... I fell in love with one I saw on tv (Does anyone watch Once Upon a Time? Mary Margaret's shabby chic apartment is amazing and she had a mug I coveted so badly I looked it up online... But it came monogrammed and the "L" was not the same beautiful aqua, it was red--one of the only colours I don't love.) so, still looking for the perfect mug and now I just have a feeling it's waiting for me at a market in Olympia when I can get there. More incentive to get 'stable' for three months (at least physically) and make the trip! Can't wait to see your work.