Excited to meet you!

[Squiggled]

Hi, my name is Heather, not only new to the forums, but new to wegeners. As I have read and lived.... Our journeys are so long and growing.
My story (short version), I was a very successful business owner 10 years ago. I wore heels to work every day and one day I said, my knee hurts....
I don't even know how to tell my story :(
soon after I was diagnosed with lupus sle. Put on prednisone and pain pills. Fast forward 10 years and I haven't worked since, gained 150 lbs, list friends, got divorced, lost my home, and I was still in pain, up to 23 medications, and being told I was an anomaly. Nothing made me feel better. I had completely forgotten what normal or good was. I had resolved myself to that life, kept journals for my kids to read because I just wanted to die.
Im not even sure or dont remember what prompted a change, my dr asked if I had seen my RA dr recently, I said no because not only did my insurance change, but the one I went to was a quack. She said I needed an RA dr. Being on disability, options are slim. She called a dr friend( I found out later) and begged for her to take me on, and she did. I had to drive 30 miles away, but after 10 years, what is 30 miles?
I saw her soon after and after a review of symptoms she mentions that she wants to test me for wegeners. I had no idea what that was, I didn't even know the meaning of the words she used to explain it. Vasculitis? Never heard of it.
She is part of a dr specialty group. The doctors actually know and communicate with each other!!!! Omg never heard of that! I didn't know at that point I was the poster child for wegeners. My kidneys were functioning below 50%, in 1 year I had pneumonia 4 times, pertussis, asthma and I was hoarse for over 8 months. I told her I could do party tricks, I had no cartilage left inside my nose, it was all a gaping hole.
She upped my prednisone to 60mg. I thought that made me feel better. But it didn't relieve my symptoms. After going to all my referral dr appointments she called me 3 times in 1 day. I emailed her back, apologizing for missing an appointment. She called right away and said I do have wegeners and I need to get to 40mg a day of prednisone and 15mg of methotrexate.
I cried and cried, the more I read on the internet the worse I felt. I already had lupus and it seemed to never go into remission. I cried myself to sleep that night.
The next day, I felt better, ready to fight it.
Can you believe this is the short version????
anyway, after 2 weeks of mtx, I had the strangest and most unfamiliar side effect ever!
BOREDOM
i had always felt so bad that after 10 years of sitting in my chair I never got bored. I had a glimpse of what it meant to sit in a chair all day and feel ok.
i had enough clarity of thought to realize that before I was standing at a brick wall. Even when I thought I felt better, it was nowhere close to good. I just kept putting on a show, I always knew that I hurt, it was so hard, and I was failing, but I thought that was as good as it was going to get.
lucky me, I have every symptom of prednisone use known to man, I now sport moon face and a buffalo hump. But you know what, I see the light. Mtx has been a blessing. People are saying I am more animated, and the old "Heather". Mind you, I have a 2 year treatment plan and I'm on week 3, but I feel optimistic. Something I lost 10 years ago.
wow, to write this out is very emotional... Didn't expect that lol.
Reading all your posts with stories, support and care has made me feel so good, even just as a lurker in the forum.
That's my short story, I am happy to meet everyone, and look forward to chatting more :)
heather

[renidrag]

Good to meet you Heather, as you already know there are wonderful people here and all in the same boat. Welcome. Where are you getting treatment?
Dale

[mishb]

Hi Heather and welcome to the forum.

I'm glad you are no longer a lurker and have decided to tell us your story.

Boredom - you couldn't possibly be bored anymore, there is so much to read on here and such wonderful people to keep you going. :thumbsup:

[LisaT]

Hi, Heather, thanks for sharing your story. I'm so glad that after everything you've been through you've found good treatment and are starting to feel a bit better. I hope thing continue to go only uphill from here! I am fairly new to the forum myself and it's been a godsend thus far! Welcome..

[Barry Forshaw]

Hello Heather. What a story you have! Thank you for sharing. I'm sure you'll find a lot of help and support on this forum to get you through the next 2 years.

[Dirty Don]

Hey Heather, welcome to the best place for you to be now...aside from the doc's office! LOL! Lots of experience, caring, and sharing goes on here...you pick and choose what fits you...we all know WG has a size for everyone!!! Coffffeeeee...anyway, glad to have you onboard: ask, share, and vent...we've all been there, some worse, some less so. Best to you and keep on getting your NEW normal tuned in. I'm on exactly the same dose, was that is. Off pred after 2&1/2 years, and docs talking about reducing mtx this fall! Yea! But, the '2 year plan' does work, approximately. So glad you found a good doc...there are also consults available with experts in the field if you or your doc feel that's necessary. Carry on!!!

[windchime]

Welcome to the forum Heather. I ditto what everyone else has already said. You've had an interesting journey to get to this point. Glad you finally got a diagnosis. Sorry it had to be wegs. This is the best place to be however, the support here is tremendous. Keep us posted on your progress and chime in when you feel so inclined.

[Pete]

Welcome aboard, Heather!

Lots of wisdom, empathy, and humor here for you to enjoy. Sounds like your new doc has you in a better place physically and emotionally. Hope it keeps getting better for you.

[JeanMarie]

Welcome Heather. Glad your new doc seems to be on the right track!

[Alysia]

welcome to the family Heather. you have being through so much. long and sad and tough way. you are not alone amymore. you have us with you.
btw, I am curious about "squiggled" ? (I love the squiggle game).

[jvilner]

Hi heather! Thank you for sharing your story. You are not alone.

[Lilly]

Hi Heather, Its great to meet you. You have been through a difficult story :-( I was also worried about my first story being too long! But I had wegeners for 23 yrs at that time, so it was hard to make it short! So I didn't.....LOL, but I have a bad practice of long posts! Anyway, this site has helped me so much in so many ways! You are in good hands here! You can vent, tell your good and bad days, etc. Ask questions, EVERYTHING you can do with a good friend....because that's what we are. Take care and welcome~

[Squiggled]

welcome to the family Heather. you have being through so much. long and sad and tough way. you are not alone amymore. you have us with you.
btw, I am curious about "squiggled" ? (I love the squiggle game).


Ok ok two things :)
the name squiggled is kinda naughty, but it stuck to me ( no idea why;) )
anyone remember the 1 season of picket fences tv show? Ugh, I'm aging myself, anyways, there was a sex scene, right after they were finished, the woman romantically rolled over and said to him, do you feel squiggled? Somehow that scene was attached to me lol. So it has been my user name ever since then lol.

Also, you know what I find amazing about you guys? Even though the first supportive reply I got pretty much summed up most of the sentiments of other replies it didn't stop anyone from stating it as well. That is amazing because when someone like me has felt so alone for so long, every single reply means so much. It is another person to show support and feel surrounded by. So thank you guys very much, and to all the other lurker so out there, post something! It feels so good to see all the replies and care:)

[pberggren1]

Well Squiggled, you certainly made me laugh today....lol

I'm glad you feel so welcome here. We all work very hard to keep this like a big family where everyone is loved and feels welcome. Are you on facebook?

[Squiggled]

I am, I mostly just log in when someone tags me or something, why?


Sent from my iPad using Tapatalk

[pberggren1]

I'm on there a lot and chat with lots of other Weggies there too. Just easier to chat there. I am also on skype too if you're up for that.

[Squiggled]

Lol! I am such a weirdo, skype freaks me out! I even hate when my kids FaceTime me. (Mostly because they love to talk to me while they are on the toilet) lol add me on Facebook


Sent from my iPad using Tapatalk

[pberggren1]

What is your name on facebook?

[Squiggled]

Heather McLemore

[pberggren1]

I can't seem to find you there. There are a few of you there but none seem to be you. Can you find me?

[mishb]

I found you and have sent you a message.

Your fb page doesn't seem to allow me to add you as a friend.

I didn't realise that you were from Olympia just like Anne is. That will be great if you could help each other with doctors etc.

[Alysia]

I can't seem to find you there. There are a few of you there but none seem to be you. Can you find me?

Dear Dr. Watson (mmm Dr. Phil :wink1:), Sherlock found. :rolleyes1:
Heather, I found you on facebook and sent you a message, but it seems that I can't send you a friend request. so you can send to me and see the others in my friends list, or I will connect you to them.
it was written that my message to you will be in your "others" mail box since I am not a friend yet.

[Alysia]

Ok ok two things :)
the name squiggled is kinda naughty, but it stuck to me ( no idea why;) )
anyone remember the 1 season of picket fences tv show? Ugh, I'm aging myself, anyways, there was a sex scene, right after they were finished, the woman romantically rolled over and said to him, do you feel squiggled? Somehow that scene was attached to me lol. So it has been my user name ever since then lol.

Also, you know what I find amazing about you guys? Even though the first supportive reply I got pretty much summed up most of the sentiments of other replies it didn't stop anyone from stating it as well. That is amazing because when someone like me has felt so alone for so long, every single reply means so much. It is another person to show support and feel surrounded by. So thank you guys very much, and to all the other lurker so out there, post something! It feels so good to see all the replies and care:)

I couldn't find in my dictionairy "feel squiggled" (English is not my first language) but I like the metaphor :wink1:
and I am glad that you found us amazing. we are :wink1: :blushing:

[Squiggled]

Had to ask my 17 year old daughter about the friend request thing, and all fixed! Please try again guys, I would love to add you! If I'm hard to find, I'm the one listed from lacey or olympia, WA. I use the same picture too :) yay friends!

[Alysia]

it's ok now Heather. I just sent you.

[Squiggled]

Hey pberggren, I don't have any messages on fb?

[Squiggled]

Mwahahahaha I found you!

[Alysia]

Mwahahahaha I found you!
yes you did. and now you can also find the others. I sent you :cool1:

[vdub]

You have an interesting story and it seemed to cause more personal problems than most, which is really too bad.

I'm not far away from you -- I'm on the dry side of the state over at the corner of Washington, Idaho, and Oregon. About 8 blocks off the Idaho border and 12 miles north of the Oregon border. Its a very tiny town called Clarkston. I lived in Redmond for 5 years, so I'm fairly familiar with part of the country.

[annekat]

I didn't realise that you were from Olympia just like Anne is. That will be great if you could help each other with doctors etc. Yes, I was excited to get a PM from Heather saying that she is in Olympia. We definitely need to help each other with doctors.

[pberggren1]

Yes, I was excited to get a PM from Heather saying that she is in Olympia. We definitely need to help each other with doctors.


Both of you don't have a good doc? How far does she live from you?

[annekat]

I have no idea how close she lives, it's a pretty spread out area. I know of good docs in Seattle, 60 miles north, and one possible one here in Olympia that I heard of on Facebook. I know he is a rheumy who is said to have some vasculitis experience, but I have no idea how much. I haven't pursued it but gave Heather his name in a PM. I think her doc might be worse than mine if she indeed wants to put her on 40mg. pred for 2 years. But I would never recommend mine to her. I can only work with him because of what I know from reading this forum, and it is getting more and more difficult.

[annekat]

Phil, I'm not assuming Heather doesn't have a good doc. There was just something on another thread about her doc wanting her to go on 40mg. pred for 2 years. Maybe that was a misunderstanding. Other than that, she sounds pretty happy with her doc. I'll have to find out who it is; if it's a 30 mile drive, might be in Tacoma or up there somewhere....

[LisaT]

I can't remember who or which thread, but someone was talking about a good doc in Seattle. I'll see if I can dig it up...

[LisaT]

Found it but I think it was an ENT who did surgery for stenosis. Still where there's a good ENT there may be a good rheumatologist with Wegs experience.

seattle harborview hospital
surgeon is Dr Tanya Meyer


kim
dx 2012

this was from 2013, I've posted a question for Kim about how she's doing now and whether she's still happy with her doc...

[annekat]

Thanks, Lisa. I'm on a Facebook group for people with vasculitis in the Northwest and have seen some names dropped there of docs at various hospitals around Seattle. Our friend me2 (Kirk) here on the forum goes to the UW med school teaching hospital where there are some rheumies he thinks are pretty competent at treating WG. He sees a team of docs there, including an ENT and a neurologist who work with WG patients. He's given me the name of his main WG doc and says there are a couple other rheumies there he's talked to and was impressed with. Seattle is about a 70 mile drive from my house. That's not such a big deal but the traffic is terrible and my vision isn't so good these days. I live alone and there is no one to drive me. But I have a friend in Seattle who doesn't have a car and knows how to get all over around here on trains and buses. She says she'd meet me at UW if I'd get a doc appt. there. So, it could be fun. But I'm also thinking about the guy in Olympia I mentioned above, because he is in an area I drive through all the time, right in town. If he is any good; someone on Facebook likes him, anyway.

[windchime]

The buses in Seattle are so good. I worked and stayed in downtown Seattle years ago and depended on the bus to get me from hotel to work. Loved it. Aren't there buses that run from Olympia to Seattle that would hook up with the local buses. I know they go as far south as Tacoma. Maybe you could do the park and ride there and miss the Seattle traffic. Just a thought.

[annekat]

The buses in Seattle are so good. I worked and stayed in downtown Seattle years ago and depended on the bus to get me from hotel to work. Loved it. Aren't there buses that run from Olympia to Seattle that would hook up with the local buses. I know they go as far south as Tacoma. Maybe you could do the park and ride there and miss the Seattle traffic. Just a thought. Thanks, Cindy. Good to hear about the good bus system in Seattle. And I think since the time you lived here, there is some good additional commuter train service between here and there. So I could take the train to Seattle and then take buses to where I wanted to go. My friend in Seattle comes to Olympia often and does it that way. She really knows the ropes of public transportation around here.

[windchime]

Public transportation here in Florida sucks. I remember when I first moved here I couldn't believe it compared to Wa. we just got a commuter rail up and going through 3 counties around Orlando. So I'm jealous of what you have up there. :rolleyes1:

[annekat]

Public transportation here in Florida sucks. I remember when I first moved here I couldn't believe it compared to Wa. we just got a commuter rail up and going through 3 counties around Orlando. So I'm jealous of what you have up there. :rolleyes1: Well, I haven't used it enough to appreciate it, I guess. I don't even know where to get the train... I think it might be out at the Amtrak station in Lacey which is quite a drive from my house. Or maybe I'll be pleasantly surprised and find out otherwise.... sheesh, I've lived here 23 years and I still don't know these things. Getting anywhere on the bus from my house is a challenge, as it's out in the boonies. But one can always drive to where one can catch the good public transportation. It's a good thing, no matter how you look at it.