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Just wondering if there's any others out there who live along(ish) the Eastern coast?? Don't know if there's any way to all get together, but maybe with holiday traveling coming up, we could plan some individual meets... I, for one, would absolutely love to meet someone in person who deals with WG every day...
Well I am in South Florida would love to meet other WG patients as well.
Hi, I am going to Florida on Dec 5 on a cruise as a present to myself and business partner (together in business 8 years) Miami, how far are you?
I live in the Virginia Suburbs of DC with relatives in Eastern NC. also I'll be in Orlando in January on business. Hitting and common locales?
Rodger
If any of you are ever down our way - it's a lovely coastal town - I'd love to meet up with you. I check this site about every 5 days but we do go away quite a bit and are sometimes in isolated areas without the computer. Regards Carol
Wondering if there are any Wegs patients in my area. Seems to be a pretty rare disease, one demographic shows only 13 hispanic people with it diagnosed last year!!
Quote:
Originally Posted by diaevfl
You live in northern NJ right? I'm from northern NJ too, Sussex County. What county do you live in?
I am looking for anyone in the Pennsylvania area who has WG. My mom is newly diagnosed and I think if she could talk to someone it would help greatly
Hi lbrant,
There's at least one other person on here from Penn. Meanwhile, please tell your mom we'd love to have her join the group here!
How is she doing? Does she have a Wegs specialist?
It pleases me greatly to see so many people trying to meet up! You will be blessed to meet another Weggie! At least I was. Don't know about Lisa Coffeelover!:p Good job, everyone, and may your paths cross! How about a three or four weggie meet up?
There goes Doug, playing with fire again.
I am in and yes Doug...I too felt blessed to be able to meet in real time another WEGGIE
Lisa
I will try to get her to join. She is still adjusting to the meds and has been having difficulty with walking up stairs and since it is in her lung she is short of breathe. She is currently on the prednisone and a cancer drug that starts with a C and she is also on bactrium. She does have a WG specialist who is a rhuematologist and her G.P. is keeping close tabs on her , as she is the first patient he has ever had. The good thing is that they caught it when she was in the hoptital for what they thought was just dehydration from sinusitis and then the round of x-rays and tests finally told them that she may actually have WG .. They sent the blood off to Hershey and Geisngers and had it confirmed. She just got fitted for hearing aids and now can hear much better. I think the hardest part is that she was such an independant person and this came on at the same time that my dad was being treated for throat cancer ..
the next thing will be weggie summer camp.
john.
(Weggie summer camp. I dunno. I think we'd flip the canoes....)
lbrant : The chemo drug is Cytoxan (aka cyclophosphamide). We often abbreviate it as ctx or cyclo on here. It's rough stuff.
It's incredibly difficult to go from being an independent person to someone who needs so much help. We've all had to struggle with that. It's one of the many things your mom will have to grieve. Even when treatment goes well, so much is changed and lost once you get an illness like this.
It is unimaginable, a totally unreal experience akin to running a sub-four-minute mile. I'm excited for our friends on the East Coast!Quote:
Originally Posted by coffeelover
im in Greenville South Carolina.... i'm going to wight my story as soon as i fugure out how..lol:rolleyes:
Summer-Quote:
Originally Posted by sumsum5587
Writing your story is as simple as applying these basic questions used by journalists:
Who?: (you)
What?: (had symptoms- describe them- then were diagnosed with WG)
When?: (?)
Where?: (town, hospital, whatever advances your story best)
Why?: (Wouldn't we all like an answer to this question?)
How?: (tests or procedures your doctors use to diagnose your WG, for example)
Other questions can come out of these basic ones. For example, (Who?) was affected (How?) by (What?) aspect of this diagnoses?
No one will mock you or make fun of you if you have difficulty expressing yourself in writing. Whatever you write will be your story, and, most likely, the story, in part, of others. It will help us understand why you came to the forum, what it is we can do to help you deal with this disease.
Give it a try!:confused::)
ok im not good at writing but ill give it a try...:):confused:
Good for you! When you are ready to post it, we'll be here! This isn't an English composition class or Journalism 101, so spelling, punctuation, grammatical correctness (ouch!) or any of the other bugaboos that haunt you don't matter: there is no grade to give, just comments or suggestions related to our BFF, WG and your experience with it.Quote:
Originally Posted by sumsum5587
p.s. It doesn't have to be 500-1000 words long, single-spaced, either, just as many words as you need to tell your experience with WG. In fact, if you suffer permanent shyness, that's OK, too!:p
thanks!!:) i posted it.. after i did i realized that i left out a few things but ill fill yall in later...
I live in Pennsylvania. What area of the state are you from? I was Dng in 09/08 with wegners. I see that you had said in one of your posts that her blood work was sent to Geisinger at hershey. Are you near there? I would be more then happy to talk to you or your mother about the disease. I am still relatively new and in the learning process myself, after almost having had it a full year already. I live in Schuylkill County, Pottsville , Minersville Area. If there is anything that I could do to help just let me know.Quote:
Originally Posted by lbrant
Quote:
Originally Posted by crackers
I must not be reading these closely enough. Here's another bit of wit I missed, and, for once, it wasn't because I'm a nitwit! Har! Yeah, John, we can set it up along the road to Birmingham, some sweet little village off the M6 motorway. Jack can meet us there. Sue probably will beg off because dealing with one Weggie is tough enough! I reckon UK is as close to mid way as we are going to get with the way this group of Weggies sprawl around the earth! :D
Birmingham - some sweet little village???
The South Coast is a little more picturesque if you fancy travelling a little whilst over here...
Hate to admit it, but it is true. :(
Although there are some nice villages out towards Stratford and I'm not far from there. :)
[QUOTE=Sangye;4144](Weggie summer camp. I dunno. I think we'd flip the canoes....)
:D I just had a funny picture in my head.LOL
Did you mean flip the canoe? or we wouldn't fit into the flipping canoe???
Weggie summer camp sounds quite interesting.
Camping along the Eastern Shore:cool:
I like your version better! Whoever invented canoes was clearly not on pred.
i think i'd have trouble fitting into a tent now never mind a canoe :eek:
john.
We are clearly NOT happy campers!
You will be blessed! Do it if at all possible, and document it some way so everyone on the forum can enjoy the weggiefest, too!:)Quote:
Originally Posted by jeff rizz
Quote:
Originally Posted by Luce
I wasn't clear. Clearly Birmingham isn't a village, so I suggested somewhere (presumably) half way between Liverpool and Birmingham! Oops!
[QUOTE=Terri;4611]Come to Nebraska! One of the fun activities we do on our mostly spring-fed Sandhills rivers and the Niobrara River to the north border is take trips in stock tanks. A group of people sit in the large stock tanks, letting the current take them through some very scenic parts of the state. Mooo! I'll try to locate information of the stock tanks because I doubt most people on the forum have any conception of what they might be.Quote:
Originally Posted by Sangye
Is it like our inner tube rides on the river - same - just current powered
It's more like sitting inside a meter tall, three meter diameter galvanized steel, well, water tank, with six or so people, possibly cushions and food and drinks if you wish, and no particular way to control its motions. I've not had a chance to go on such a journey, so I presume there must be oars or (more likely) long push poles aboard for when you desire to get off the river. I imagine it must be something like the teacup ride at Disneyland, with the circular tank twisting and turning in direction determined by currents. There are tanks for hire.:)Quote:
Originally Posted by jola57
Ok same idea slightly different venue
Hi I live in the New York area. Just recently diagnosed.
See Geraldine's 1st post here.Quote:
Originally Posted by Geraldine 1
I am in Georgia and would love to know if there are nay support groups in and around the Atlanta area.
Hi Peachy and welcome to the forum.
You can go to Front Page | Vasculitis Foundation and check out the contacts and support for your area.
There is a chapter in Atlanta with a contact.
In the mean time, you can find plenty of internet support here.
Sometimes it gets pretty interesting. LOL
Again, check in the Front Page | Vasculitis Foundation materials. They have support groups throughout the USA. Mine are way the hell away (Nebraska is a wide state, as even the VF sometimes forgets!), so I am glad I found this website. But Atlanta surely has an organized WG support group.Quote:
Originally Posted by peachyhugsgina
http://vasculitissupportgroupatlanta...mberlodge.org/
peachyhugsgina... who are you treating with in Atlanta. My son treats at the emory clinic
Hi, Hi, I am Gina. I am treating with a rheumatologist in Peachtree City, Dr Donna Paul. I am seriously considering asking her to refer me to
DDr Barri Fessler at UAB in Birmingham , Ala. I am being treated with methotrexate for lupus arthritis, and lupus vasculitis , and being a suspect for Wegeners.
Take care
Peachy hugs,
Gina
A.J. has an appointment at the UAB in May. Its in the pediatric unit of course, but its a whole like closer to us than ATlanta.
INDIANA! lol kinda no where 4 most of you
Nashville, TN. Anyone nearby?
in the summer I go to Livingston TN to visit familyQuote:
Originally Posted by HopeinTN
I know exactly where that is. We go thru there to a lake. It's beautiful.
Im hispanic ,my daughter has been diagnosed, we live in South Florida.Quote:
Originally Posted by diaevfl
Make it 14, I'm technically Hispanic, grandma came over from Spain. LOL
I am in South Jersey
I think JanW is from Jersey.
How do I reach Jan? and thanks
This group has saved my sanity. Wegs is weird and rare and unpredictable...but it attacks the kindest souls :)
Susan--Here is Jan's page: http://www.wegeners-granulomatosis.c...bers/janw.html. You have to be logged in to access it. From there, you can send her a private message or an email. If you lose this link, you can look it up under Member List (which you can get from FAQ).Quote:
Originally Posted by newweg
Al
I have meet so many weggies in the last month
Thank you:biggrin1:
This group has saved my sanity. Wegs is weird and rare and unpredictable...but it attacks the kindest souls :)[/QUOTE]
Perfect quote for a perfect group of people. :thumbsup:
It sure is, and I mean it. my own 'family' few that they are.. can't 'deal' with MY reaction to meds..blah blah...this disease puts so much in perspective, doesn't it?
Perfect quote for a perfect group of people. :thumbsup:[/QUOTE]Well, we're not all kind, Terri. I, for one, am mean and ornery. At least, I would like to be, though some say that I can't quite pull that off.Quote:
Originally Posted by Terri
By the way, I like your avatar....
Al
Since this is titled Eastern USA I thought I would let you know that BU and Boston Medical Center is holding an open house in Boston on May 71th. It is being headed by Dr. Paul Monach and Dr. Peter Grayson. These MD's took over for Dr Merkel when he left for Penn. I have met with both before and look forward to this meeting as I have never met (in person) another weg. Also, one of the topics relates to how we look at ourselves and perhaps the fears we face wether warranted or not. I am going to mention this site to them so perhaps they can even lurk if they want to delve deeper into some of the pain real everyday people go through. Dr. Monach is the Rheumatologist and along with Dr. Grayson they work together as a team as Grayson is more into research.
So if you are in the Boston area call the BMC Rheumatology Dept and see if you can get an invite. I assume you need one as there is an RSVP on the invite.
Dale
I would love to attend an open house like that Dale. I hope you meet some interesting Weggies.
I'd love to come there,will there be shrimp on the barby?Quote:
Originally Posted by Carol
no I live in Youngstown,Ohio..I know there are a few people from Oh. on here but I don't know how far away they are. Nashville isn't too far off..I'm trying to win tkts to come down there for the CMA Feat in June (my birthday ) If I win maybe I can look u up.Quote:
Originally Posted by HopeinTN
Debra- did you make it to Nashville this summer?
No ,I didn't make it there but that is difinately one of the things on my bucket list. I love country music and want to go to the music fest or cma awards one day.I just came back from spending 15 days in Fl.. Walking the beaches,swimming,going on long walks with my sister and shopping.Had a great time but was back for 2 days and I am sick.I think its from having dirty furnance vents...since we had to turn on the heat the other nite and I woke up the next day with a severe sore throat,coughing,sneezing, runny nose. I went to the dr. today and I am on a antibotics to take for 6 days.And I'm having someone come out Tuesday to clean the vents...if that doesn't work I'm on the next plane..ha !ha! I wish.
Come visit anytime. It's a great place if you love country music. I prefer the beach! We are having a cold snap with frost tonight and a hig of 60. It will be back in the 90's at the end of the week though.
I would love to come there to visit..one day. I like yr picture ..I prefer the beach too,it is just so relaxing."the only worry in the world is the tide gonna reach my chair"..Zac Brown Band. And it did alot..I bought a small beach chair and after my 2 mile walk I parked my butt right up the where the tide comes in.. when I got back and took my suit off,I had so much sand in it...it was so funny,but did it everyday...loved it.The rip current were pretty bad but on the last day I decided I was going in..And I was doing really well until a big tide came in...the swim bottoms went to my knees,my t-shirt came up,I lost my ball cap but I did save my sunglasses!!!I am seriously thinking about moving back down there but for know I am living with my 86 yr old mother who doesn't want to go anywhere and I'm not leaving her. So spending another day in paradise ...OHIO yuckkkkk.we had frost last nite and it doesn't look like it gonna get warmer till spring !
LOL! While I love the beach I would also love to have snow like you get up North. If we are lucky we'll have 1.
Really I thought it snowed alot more there,believe me 1 week and you would have enough of it. The only things nice are the clothes and boots !!!
Hears a good story for ya.One x-mas my ex and I were coming home from Florida to Ohio,we were in the mountains of Ashville,Tenn.and all of a sudden we see a tire go flying past us...well it turned out to be ours. We were in a jeep and it came off as we were going over a overpass and just it kept on going. Lucky the couple behind us pulled over to help us out, she said her father was a mechanic and would be able to fix it...........Well first we had to stop at the grocery store,then go by and see where they both worked(different places)then go to there house to see there x-mas decorations and family photo album...then go meet the mom and more pix,finally to her dad's shop who couldn't fix it anyway sent us somewhere else and had to rent a car the rest of the way home. But it was kinda scary...like look ma ,strangers..can we keep them !!!
OMG! That is hilarious. Sounds about like TN. I'm originally from KY and it sounds like KY too. We did get more snow back home. I'm glad you made it home safely after that trip. Good to know there are a few good people still around.
Thanks for the laugh!
I am in Yardley, PA just north of Phillie...how about you?
XnCelt,
I'm by Valley Forge. We are practically neighbors.
Donna
I was diagnosed with wegeners last jan29 after having a stroke. While hospitalized at yale they performed a kidney biopsy that showed I was an a positive for 21/2 yrs prior I was diagnosed with everything from gout to sinusitis by several specialist. After my diagnosis of wegeners my rhuemotologist said everything I was suffering from for the last 21/2 yrs was related to wegeners and dr Paul Monach confirmed this for me. Dr Monach also said that wegeners probably formed the clot that caused my stroke supposedly making me the first person that this has happened to. I wonder if anyone else has had a stroke possibly due to wegeners also I feel chronic fatigue any help out there? I go for my third infusion in June and am off of prednisone ( 60mg a day at my biggest dose) I also have chronic pain in my legs on average an 8 out of 10 pain level any feedback would be greatly appreciated
Sent from my iPhone using Tapatalk
I'm glad they finally diagnosed you properly, before Wegs did even more damage or took your life. When I was first diagnosed (2006) I developed "uncountable" numbers of clots in my legs and lungs that went undiagnosed for a full 3 weeks. It was nothing short of a miracle that none went to my brain or heart and that a massive clot didn't form in my lungs. No one knows how I survived at all. My lungs were still hemorrhaging and I had to go on anticoagulants for the clots. Later we learned that Weggies are ~23% more likely to develop DVTs (clots in the legs).
To your second question, I've been dealing with Wegs for 9 years (10 years if you count the year of horrific symptoms pre-diagnosis) and have never had a single day without debilitating fatigue, weakness and pain. Not everyone has that once the disease is under control, but many do. I certainly feel better than when the Wegs is highly active, but I don't ever feel anything close to good.
I have had strokes since diagnosis. Lots of white spots show up on my MRI because of lots strokes. It is assumed that they are correlated to my WG.
I too have fatigue, pain and weakness every day. Some are better than others but if I have one fairly good day I can be sure to pay for it right after.
Disease management is the first priority for me but a close second is taking care of my health. Good diet, as much exercise as I can do and some supplements have helped me do the best that I can I think.
Hello Sangye, good to see you. I am glad you are with Dr Monach, my Doc too. As Sangye has said clots are not unexpected with Wegener's. Mine went to my lung and with a hole in my heart was very lucky it did not cause a stroke. We all find a way to embrace our new normal and so will you, it just takes time. Going that long without a diagnosis is embarrassingly normal, so glad you finally found a specialist that took the time to connect the dots.
I have been off Wegs meds for a while, however fatigue is the one symptom that remains. Some days better than others (Pete). I was also left with a wicked ugly case of neuropathy in lower legs and feet and deal with it daily along with SOB.
All that being said, you are going to be different than us. We all are. I hope you don't have the fatigue, some don't, I hope your leg pain is short lived and goes away, some does. Some symptoms I have others don't and some others have I
don't. And yes I put the "wicked" in on purpose.
Dale