New to the group but not the disease!

[Beverly]

Hey Y'all...1st time to post, but have been "lurking" for little over 3 wks. Have read all of your updates, Phil, and have read enough of other posts that when I looked at map, I recognized names. Diagnosed w/WG in Oct 2009 after a full yr of treating symptoms and looking in mirror wondering who this person was, didn't Will tell more of my story later. This forum has been good for me, more than I would have ever thought. I know you have much to offer me & I you. Several times I wanted to say something, tell someone they needed to see a diff. doc or just tell them they were experiencing WG. I knew GPA wasn't grade point average, so I had to look it up:confused1: Same nasty, complicated, incurable disease :glare: We do have each other and I have observed the love, compassion and respect that you guys have for each other..None of us asked for this, but we do have in common something that we try not to focus on, but how to live day to day with it. I am changing WG doc. but do not know who yet. Primary care doc. is searching for me thru friend of his. I know about the sites suggested here..thanks. Well, I was just going to say Hi! God bless you all.

[pberggren1]

Hi Bev, welcome to the family. We await to here your story. Where are you located?

[annekat]

Welome, Beverly! Lurking is a good way to become acquainted with everyone and how things work. I'm glad you have taken the leap and started posting! So you've had WG for coming up on 5 years, not including the pre-dx portion, of course... so you will no doubt have a thing or two to pass on from your experience. This is such a special forum and I'm glad you are a part of it. Looking forward to hearing more about your history, your areas of WG involvement, and where you are from (I'm guessing the South). I also would to find a new doc but I am in the Pacific Northwest.

[Alysia]

welcome to the family Beverly. you are invited to share and ask and tell whatever you feel like. it is your home as well now.

[Beverly]

Hi Anne & Phil
I Live outside Ft Davis, Tx in the Davis Mountains...3 hr drive east of El Paso. Not close to anything! Anne, did you think I am from the south because I said "y'all"?:biggrin1:
I have been reminded of so many things that I haven't thought about in a long time...am wanting to write everything down so others can know, and even more pressing, so my new doc will have all the info...whenever we find him/her!!

[annekat]

Beverly, yes, it was the "y'all" that did it. I have cousins in the South. Well, Texas is at least in the southern part of the country, if not the official "Deep South", so you are entitled to say it. I seem to remember GW Bush saying it occasionally, even though he was originally from Maine, as far as I know. I think Obama says it, too. Maybe the whole country will be saying it someday. I like "y'all". :cool1:

Anyway, don't be afraid to lay out some of the stuff that is on your mind, whenever it is comfortable and in whatever sized installments you want. You will find this forum to be amazingly responsive and supportive.... we all know what it's like and want to jump in and help in ways that no one can who isn't a Weggie.

[Beverly]

Thank you, Alysia. I am so excited to get to talk to each of you and some I feel as if I already know. I had no idea about the length of time that some have had WG and very sad at the young age that some have to deal with this stuff :sad:

Whenever I figure out how to use the site and enter information I will do so. I managed to put a yellow pin where I live, but couldn't get back to the full map. I will figure it out, but being a hands on learner, it may be later than sooner.
Thanks for being there for everyone...glad you are addicted!:biggrin1:

[ingemlb]

Welcome Beverly. I am from the deep south but to the east of y'all in a land they call down under lol

Glad you found this forum. I was extremely lucky to discover it within a few days of being diagnosed earlier this year. I was looking for forums as I was used to being in a forum for another treatment I had been on and it was a life saver finding this one and a Facebook group for Aussies and NZ'ers.

Well I am a total newbie so at the moment am like a sponge soaking up the help from others who have had to deal with this awful disease a lot longer. Look forward to hearing about your journey. I have documented mine in the links below here in case you want to follow up. I spent a few days reading Phil's progress thread early on and thought "what a great idea" so started one too where I then kept a track of other posts I had started so I could find them again. Seems to work for me.

Here is my "progress" thread: http://www.wegeners-granulomatosis.com/forum/weggie-s-stories/3849-update-ingemlb.html

Here is my thread to introduce myself. http://www.wegeners-granulomatosis.com/forum/new-member-introductions/3733-new-member-australia.html

Thought I would share these with you to give you some ideas.

Good Luck in finding your new WG specialist. I am still not quite decided if I am with the right doctors but when I was first diagnosed I had to change all my doctors and specialists which was quite stressful and exhausting and it is taking me quite a while to figure out how to work with them and for them to get to know me. The trouble too is the pred made me mentally rather unstable hence they have learnt to know me when I am not quite myself and I am sure that would have some influence on their impressions of me :( Anyway time will tell!!

[Beverly]

Thank you, Inge. I have read all of your update. Will read the other. I just love it that we can be friends and converse all over the world. Sad that the common thread is deadly:sneaky:and sneaky, but the bright thread is faith, love and hope. You all have proved yourselves to be commited to doing the best you can with your own illness and faithful in encouraging each other. Inge, you have suffered much and the pred. is certainly a friend/enemy, messing with our bodies, minds, emotions, etc. Thanks for responding and for your encouragement:biggrin1:
Blessings to all
Bev

[windchime]

Welcome to the forum Beverly. I fly into the El Paso airport to visit my mom and sister in Alamogordo, NM. It's such a small world. lol I assume that since you are from an area of limited doctors that you are willing to travel for a doctor? There is the Mayo Clinic in Phoenix that has some good wegs docs I understand. You would probably only need to make a trip a couple of times a year and they could consult with your local doc. Just an idea. San Antonio has some big hospitals too and you might have luck there. I was diagnosed at the Wilford Hall the Air Force hospital there. Just some random thoughts.

[DJS]

Yes, welcome Beverly. I just love your spot on the planet, never saw as many stars as I saw in Ft. Davis.
i took my wife there a couple of years ago just to see the night sky. We got in on a tour and presentation at the planetirium there. It was wonderful. Hopefully El Paso has medical care for you.

Dennis

[Beverly]

Thank you Cindy & Dennis. My Rheumy is in El Paso, but not comfortable or satisfied with his care. Primary care is in Ft Davis. Yes, Dennis, you can really see the stars out here.:thumbsup:
There is someone who lives in El Paso. Maybe he will read this and tell me who his doc is. There is travel anywhere we go from home. 3 hrs or more to good docs, hospitals, WallMart, airports etc. Thanks again for your welcome..look forward to getting to know you & sharing together.
Bev

[MikeG-2012]

Anne, did you think I am from the south because I said "y'all"?:biggrin1:


I knew because of your Southern typing accent! (-8

[DJS]

Beverly, just had to mention that Ft. Davis was on the news this morning so you were thought about again. This time I wondered if you had any hail damage to your home or vehicles, that was some hail storm!

dennis

[Beverly]

Hey Dennis So nice of you to ask. We are 16 mi outside of Ft Davis on Loop 166 toward Valentine. Did not get anything but cloud cover. I will have to watch Midland/Odessa news tonight to see if they mention or show it. Hope you are doing well and I like your ship. Does it have a certain meaning? God bless you and your family:biggrin1:

[Debbie C]

Hi Beverly and welcome to our "family". I used to live in Texas also. I first lived in a small place outside Graham on Possum Kingdom Lake. Then I got a jon with the airlines and moved to Euless right outside DFW airport. I've been gone from Texas for awhile now but I still say ya'll all the time. Hope u have some good luck finding a good dr. Take care

[DJS]

Hey Dennis So nice of you to ask. We are 16 mi outside of Ft Davis on Loop 166 toward Valentine. Did not get anything but cloud cover. I will have to watch Midland/Odessa news tonight to see if they mention or show it. Hope you are doing well and I like your ship. Does it have a certain meaning? God bless you and your family:biggrin1:

Yep, it is my namesake, the Wisconsin State Scooner. And by the way, it is my wife that has Wegners but she has been off all of her drugs since last August. Other than fatigue, now and then, she is in remission, if that is possible.

dennis

[BookNut]

Welcome Beverly! You are absolutely correct in the value of this group. Everyone is very helpful and supportive. Looking forward to your posts!

[Miska]

Hi Beverly! I am from south of Houston. I am new also. My WG is mainly in my throat, eyes, ears and sinuses. So grateful I found this forum. Everyone is very nice and helpful. Welcome.

[Beverly]

Thank you Debra for your welcome to the "family". Neat to hear where you lived in Tx. Our son and family live in Mineral Wells and have friends @ Possum Kingdom. BookNut, I really like your picture, thank you also for your welcome. Miska, welcome to you...so glad we both found this wonderful group. If you have posted more about yourself, I will find and read. Oh, Debra, my husband saw your pic and really got excited when he saw the bike:drool:

[keegan55]

Welcome great group of people here. I do not post a lot but like u read. Please post your story it might help someone. I only have known for 4 months after a year of misery and the only way they found it was through lung wedge resection. This group is really the best welcome

[lag713]

Welcome Beverly! I hope you find this forum a nice source of support. Glad you found us!