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Sangye
04-21-2010, 07:25 AM
It's been 10 days since Moyan posted anything. She normally posts something at least once a day. Her symptoms seemed to be on the increase lately and her doctors are lousy. If anyone receives a PM or email from her, please let us all know.

It's always scary when a Weggie stops posting. Please everyone-- if you wind up hospitalized and don't have internet access, do your best to get a friend or loved one to post something about you. I haven't done that when I've been hospitalized before, and I know I've made some of you worry.

pberggren1
04-21-2010, 11:08 AM
I agree Sangye. I will send her a e-mail or private message.

Sangye
04-21-2010, 11:17 AM
I sent one yesterday but didn't hear back. I hope she sees yours!

elephant
04-21-2010, 08:42 PM
I hope she is ok and getting good treatment, I have been worried about you also.

JanW
04-21-2010, 10:46 PM
Very good advice Sangye. When I first came on here I read so many people's stories -- PMed a couple and never heard back...always wondered what happened to them.

elephant
04-22-2010, 01:49 AM
I wonder that too Jan. Did they get better? Did they get worse? Or we such Naggers that they couldn't take it anymore? :) :)

Sangye
04-22-2010, 02:04 AM
LOL-- Let's face it, we nagged the heck out of 'em. :D

pberggren1
04-22-2010, 04:10 AM
I came on this site because of naggers like you guys.

Didn't Germain and Moyan or Jolanta and Moyan exchange phnoe numbers on a thread somewhere? Maybe one called Vancouver, BC? Or something like that. I will look into it.

jola57
04-24-2010, 04:06 PM
Its late tonight but I will try tomorrow morning and call her. Will let you know as soon as I talk to her

Sangye
04-24-2010, 10:45 PM
Oh, thank goodness you have her number Jolanta! It's now been 14 days since she posted.

Doug
04-25-2010, 01:13 AM
Very good advice Sangye. When I first came on here I read so many people's stories -- PMed a couple and never heard back...always wondered what happened to them.

JanW- I just noticed today I had a private message waiting for me, and was upset with myself for missing the notification- for over two weeks!!! I find it too easy to over-look the private messages left on this site, and highly recommend the e-mail method as I (and I think most people) am more apt to castch up on all e-mails every day, whereas a private message on this site might be the only one I get in months.

pberggren1
04-25-2010, 07:08 AM
I just tried calling her again at 778-278-3004 and again no answer or answering machine?

pberggren1
04-25-2010, 08:10 AM
I was just checking my e-mails and saw one from Germaine from the 21st. She said she talked to Moyan on the phone about 2 weeks previous. She said they were both under the weather with fairly hoarse voices. She gave Moyan some docs names and numbers in the Vancouver area. She has not heard anything since.

Lightwarrior
04-25-2010, 10:20 AM
My anxiety level over her well-being is increasing.

Sangye
04-25-2010, 12:48 PM
Mine, too. This is totally out of the norm for our dear Moyan. She was getting many Wegs symptoms, and her docs are clueless about how to treat her. I feel so helpless.

JanW
04-26-2010, 01:32 AM
I know. I really hope we hear something soon.

jola57
04-26-2010, 04:38 PM
I tried many times without success. I do hope that she is OK

Sangye
04-26-2010, 11:44 PM
Oh, no-- this is not good to hear. :(

renidrag
04-27-2010, 01:09 AM
Do you think we could call the local police and ask for a well being check? Does anyone have an address?

Sangye
04-27-2010, 01:33 AM
I'm going to email Andrew to ask if he has any info (eg address) on Moyan.

elephant
04-27-2010, 02:25 AM
Good idea Sangye, hopefully we can get some answers.

Sangye
04-27-2010, 02:29 AM
I think it might be a good idea if we each gave Andrew our address, phone and one or two contact people for situations like this.

Lightwarrior
04-27-2010, 02:51 AM
How do we do that?

Sangye
04-27-2010, 03:01 AM
At the top of this page, Click on Community/ Member List. Scroll down and click on his name. On the left, select "Send Email." Don't leave it as a Visitor Message on his page or everyone will have access to the info.

Lightwarrior
04-27-2010, 04:13 AM
Thanks, done for my information, Great idea for all of us Sangye

Sangye
04-27-2010, 05:20 AM
Sent mine, too. I put the info for 2 friends and my landlady, who lives upstairs.

jola57
04-27-2010, 12:20 PM
I was looking in my correspondence with moyan and i found the name of one of her Dr's, I will call and find out about a
swedish lady with Wegeners. I also have what might be her last name. I will let you know how i do.

Sangye
04-27-2010, 12:28 PM
Once she said that Moyan wasn't her real name. It's a nickname from a child in the family, I think. Thank you for tracking that down, Jolanta. I hope they can at least pass on our concern to her.

jola57
04-27-2010, 01:45 PM
I have found moyans' real name and if I don't get anywhere with the dr., I can call the hospitals.

Brooke
04-27-2010, 11:24 PM
I will email my numbers as well.
I hope Moyan is ok.

JanW
04-28-2010, 01:02 AM
Done! But you know me -- I post from the hospital!

pberggren1
04-28-2010, 06:03 AM
I may not be on regularly for a while. My computer crashed over the weekend. I may have to get a different one. I hope Moyan is alright.

elephant
04-28-2010, 07:23 AM
Keep us updated Phil. Hope you start to feel better soon.

jola57
04-28-2010, 04:42 PM
So far no luck but will keep trying to get some info

Luce
04-29-2010, 02:36 AM
I'm worried for Moyan too - it's not right that she's not answering her phone.
Thanks to everyone who is ringing round, it would be pretty expensive trying to do that from the UK.
I hope we find her soon.

Sangye
04-29-2010, 03:19 AM
Man, it's 18 days since we've heard from Moyan. Thank you for searching for her Jolanta. I hope you find her soon. :(

elephant
04-29-2010, 05:50 AM
She is probably at a local hospital and I don't know if that hospital would give info that she is even there.

Sangye
04-29-2010, 06:58 AM
I don't think they'd give us info on her for privacy reasons, but I'm hoping that a doctor/ hospital would send our message to her.

pberggren1
04-29-2010, 11:31 AM
I know that my local hospital will let me know if someone is in or not.

Sangye
04-29-2010, 11:34 PM
Yeah, that's true-- you can always call and ask "What room is ___ in?"

jola57
05-01-2010, 02:34 PM
No luck so far, too many hospitals and then there are extended stays... I will try on Monday again. I do not know if she has any family here or close friends. Her cell doesn't pick up but it is not turned off.

elephant
05-01-2010, 08:05 PM
Thanks Jolanta for trying to call Moyan. I hope she is ok.

Sangye
05-02-2010, 12:05 AM
Thank you, Jolanta. I really appreciate you trying to find our Moyan!

jola57
05-02-2010, 09:59 AM
Oh joy, I found moyan. She is in a hospital. I have asked the nurses to let her know that we were all worried and wish her quick recovery. I am away this week but will be back on 10th and will visit if she is still in. From what the nurse told me, they are trying to get her mobile (she said that this may sound mean but they realy need her moving) apparently she came into the hospital on her own but since then will not stand up to walk. I explained how difficult that can be sometimes with Wegeners. I am just happy that she is being taken care of. I do not know if there were any family of friends visiting as the nurse just came on the shift.

Sangye
05-02-2010, 10:04 AM
Oh, I am SO happy you found her! I wonder what happened and if she's in pain from Wegs. It doesn't sound like her to refuse to walk at all unless there's a good reason.

Since you're going to be gone all week, can you pass the info (hospital name and Moyan's real name) to the others on here from BC via email or PM? That way we could still have contact with her. Thank you so much for being a devoted friend and tracking her down. :)

elephant
05-02-2010, 11:10 AM
I am so glad too you found Moyan. Glad she is alright, and being taken care of. Jolanta thanks again.

Brooke
05-03-2010, 12:02 AM
Glad she is being taken care of!!!

JanW
05-03-2010, 01:16 AM
Thank goodness she has been found!

Lightwarrior
05-03-2010, 12:56 PM
What a relief!! Happy day, thank your for your tenacity Jolanta.

MCC
05-06-2010, 08:43 AM
I missed this! Well done for tracking her down Jolanta, I hope Moyan is doing ok in hospital.

jola57
05-06-2010, 10:24 AM
I will be home in couple of days and will go to the hospital ASAP

andrew
05-07-2010, 09:48 PM
Glad you found Moyan!!

I have received contact information from several of you. Anyone that wants to add their details to the spreadsheet I'm putting together can either PM me or email [email protected]

jola57
05-09-2010, 04:55 PM
pictures don't work will attach tomorrow - tonight in a worls of hurt - my lower back is a wreck - bad matterace in Whistler
Moyand and me (I, for the purists)

This is the card from all of us, sorry but I couldn't fit all the names

I visited with Moyan today and she wanted to thank all of you for thinking and caring so much about her. She misses us but is unable to use a computer. If you wish to write to moyan you can use my email [email protected]. I will print the email and deliver it to Moyan. She is doing much better but will be in the hospital for a while.

andrew
05-09-2010, 05:04 PM
Thanks for that jola, well done on the card :-)

elephant
05-09-2010, 10:49 PM
Thanks Jolanta!

Sangye
05-09-2010, 11:24 PM
Thank you Jolanta-- I hope you didn't hurt yourself by visiting! I can't see the card.... I'll send you an email for Moyan. I'm wondering what happened that she's hospitalized for so long. If you can't share that online it's okay-- I'll ask her via email. Meanwhile, rest and take care of yourself. :)

Lightwarrior
05-10-2010, 03:13 AM
I visited with Moyan today and she wanted to thank all of you for thinking and caring so much about her. She misses us but is unable to use a computer. If you wish to write to moyan you can use my email [email protected]. I will print the email and deliver it to Moyan. She is doing much better but will be in the hospital for a while.

http://www.wegeners-granulomatosis.com/forum/images/icons/icon14.gifThank you for sharing these wonderful pictures, great card and so nice to see both of you. Take care of your back!!

Luce
05-10-2010, 05:57 AM
Thank you for all your efforts Jolanta, the card is fabulous and I love that Moyan has a smile on her face - it looks like you made her day.
I wish her a speedy recovery XxX

Doug
05-10-2010, 06:14 AM
Aw! Thank you so much, Jolanta! The only message I want Moyan to hear from me is "GET OUT OF BED AND WALK!" As much as she may want to stay off her feet, I think almost all of us can verify for her that the longer you are immobile, the longer it is before you can move again, and the harder.

p.s. I don't think I told Luce what a beautiful bride she made!

Lola
05-11-2010, 09:34 AM
Thanks Jolanta. Please tell Moyan to hurry back. I miss her posts and wish her well.

Col 23
05-11-2010, 03:03 PM
Thinking of Moyan and a speedy recovery.
cheers Col 23

jola57
05-13-2010, 01:11 AM
thank you all I will print and give to moyan. Cheers

jola57
06-05-2010, 01:02 PM
Hi everyone. Just wanted to update you on moyan's recovery. She is out of the hospital and in a rehab facility. She has great trouble walking and hopefuly with on site physio she will get better. She misses all of us and sends her love. She should be back in a month.

pberggren1
06-05-2010, 01:37 PM
We all miss her.

Jack
06-05-2010, 06:23 PM
I've only just read about Moyan's problems - all my thoughts and sympathies go out to her. I know how hard it can be to learn to walk again!

Sangye
06-05-2010, 11:15 PM
I'm glad she's out of the hospital--it's been a long time. I hope the rehab folks will get her walking again. They're usually great at getting people moving even if they don't want to. Big hugs to her if you talk to her again, Jolanta. Thanks for keeping us posted!

elephant
06-06-2010, 12:11 AM
Thanks Jolanta for keep us posted on Moyan. I miss her too!

MCC
06-06-2010, 09:17 AM
I hope she is doing much better now and able to come back soon!

Jack
08-05-2010, 02:20 AM
Moved from "Cytoxan" thread.




Good Day all,

This is Siv's daughter Carmen, I am sad to inform you that my Mom passed away on July 16, 2010, from complications with her weggeners disease. Her last 6 months alive she was hospitalized and in great pain. I am sad she is gone , though happy she is a better place. Please inform any others that she may have known as well. Thank you.






.

JanW
08-05-2010, 02:21 AM
Oh,God, such terrible news. Our thoughts are with you and yours.

renidrag
08-05-2010, 02:32 AM
My thoughts and prayers are with you. We will miss her special humor. Such a trajedy.
Dale

elephant
08-05-2010, 02:38 AM
I am so sorry for your loss, I sure will miss Moyan. I use to inbox her quite a bit. I am so sad that we lost someone so special.

Brooke
08-05-2010, 03:13 AM
Thoughts and prayers to you. What a tragedy.
Does anybody know if she had other medical problems or just Wegener's? Also, what involvement she had?

Luce
08-05-2010, 03:18 AM
So very sad and upsetting, good bye Moyan.

Col 23
08-05-2010, 05:19 AM
So sad to hear of Moyan passing.
Col 23

JanW
08-05-2010, 05:37 AM
I think you can check out the old posts, Brooke. I remember she got very sick and was in the hospital and we didn't know where she was for a while, and that was scary. I don't know if we knew that she apparently didn't get out. She was very kind and a wonderful poster.

Lightwarrior
08-05-2010, 06:03 AM
Carmen,
Your Mother meant so much to us. I am so sorry for your loss, we will miss her. My heart is with you.

Barbara1966
08-05-2010, 07:34 AM
Carmen,
So sorry for you lost, your mom will be missed terrible, our prays are with you.

Barb

Sangye
08-05-2010, 11:41 AM
Oh no, what terrible news. I was just thinking about Moyan yesterday, hoping she was going to start posting again. I can't believe it, so sad. Carmen, thank you for letting us know. Please know that we cherished your mom and loved that she was part of our group. I will miss her. My sympathies to your family.

Doug
08-06-2010, 12:10 AM
http://www.youtube.com/watch?v=-x9Zxrs5s9k&feature=player_embedded

I am back. I can talk through grief, but typing out how I feel about the death of a friend, family member is another thing. How am I? I've recorded a short video. I don't want anyone to worry about me.

elephant
08-06-2010, 12:58 AM
Doug, I thought about Moyan all day yesterday...still thinking about her. Told my family about her. Thanks Doug for sharing.

Sangye
08-06-2010, 01:13 AM
Oh Doug, that was beautiful. Please take care of yourself. Grief has a way of triggering all past losses.

It's really hitting me today that Moyan is gone. And I realize she didn't have a Wegs specialist and knew her docs were not able to give her the best care. She's the third member we've lost this year because of that. I'm heartbroken and frustrated. Grateful for what I have, and constantly upset that others don't have what they need. It's not okay. I don't know what to do-- nag more? Is that even possible?

If you are one of the people out there who doesn't have a Wegs specialist but think things are going well enough, please find a way to get one involved on your case. Phil is a great example of someone who finally had enough and was determined to do whatever it took to get a proper doc. He was willing to go to Mayo, then Toronto, and look what happened-- a Wegs doc showed up in his own town. I do believe that his determination opened a door to that possibility, however we each explain that based on our beliefs.

We are like family and I can't bear to lose another one of you.

Jack
08-06-2010, 01:56 AM
Thanks for expressing those thoughts Doug. I'm sure you speak for all of us and I for one appreciate it.

Doug
08-06-2010, 03:58 AM
I had to try a video because I couldn't see to type that well yesterday, because of grief.

Thank you moyan, for the short time we knew you. Your gentle humor and terrible fight are going to stick with us.

elephant, I think we all thought about moyan all day. The shock of it, the time between when it happened and when we learned....

As Sangye notes, we don't want to lose anyone else to this disease, especially for lack of adequate care.

Jack, I don't know how many people on the site have webcams, but it would be a nice way to get to know each other more easily. I listen to the video, and I become aware of how I speak, my cadences. I even felt soothed to hear it. And sad to see myself so sad and confused about the nature of my sadness. It's helped me get through it. I guess we will be sad about moyan from time to time, just as we are when we lose family or friends we see every day.

The video reminded my of how happy I was to meet Lisa and her husband Dennis a little over a year ago, she was my first and only "Live Weggie", a happy tick on the record of my life.

I count among my blessings this special lady, moyan, and the fact that I lived yet another day and can appreciate the beautiful clouds over Nebraska this fine summer day. Blessed. I think each of us has this component, blessings, in our lives, and are wise to seek them out. Oh, yeah! Louie just let me know he's one, too. (Most days.)

If I could learn these things about myself, wouldn't it be even more compelling to hear others on this forum move and speak on a video. We have our sense of people, but we all come from different places, with different sounds to our voices.

Jack, as I walked Louie (i.e. followed him as he did whatever it is cats do when left to themselves....), I thought about how you've struggled, but how indominable you are. In a wheelchair, you are still tougher than half the men on earth. Well, metaphorically, because you and I like a bit more precision in our numbers than that faux "fact". Ha! I thought about how many years you've dealt with this disease, and I took strength from that. I don't worry a lot about living with WG, yet, let a suggestion of a symptom show up...you all know whaty I mean!

I must have triggered Andrew's "private- hide" button on my first post, which makes comments on my second cryptic. You all are respondinging kindly to this mode of communication, however, and I'm glad you don't see it as showboating or something crude like that. Thank you. I feel sad just now, but unburdened.

Lightwarrior
08-06-2010, 04:51 AM
Doug,
I think you presented your feelings in a very personal and sweet way. You expressed what we are feeling, Moyan was a sweet and funny woman. Like elephant, I can't seem to get her off my mind. I remember the picture Jolanta posted of her in the hospital and how glad I was that I got to a picture of her. Thank you for posting the video.

marta
08-06-2010, 05:06 AM
Thanks Doug.
My thoughts and prayers are with Moyan and her family.
I've never been good at expressing my true feelings in times like these, and words never seem to cut it, so I'm glad you posted your thoughts in the mode you chose, as really strikes a chord.
Thank you, and God bless.

DEE
08-06-2010, 05:58 AM
Thanks DOUG for posting the video for finding the words we all find so hard
take care you
DEEx

Doug
08-06-2010, 01:27 PM
Everyone - It helped me to gain insight into why I felt so strongly about moyan's death when others seemed less personal. I watched the video several (6-7) times, and found peace, an epiphany of sorts with regards this grief. She was a funny and wonderful person, there is no doubt, she was a friend I never met.

jola57
08-08-2010, 09:21 AM
Doug thank you for this wonderful tribute to moyan. I was shocked when I got to this post. I was away since July in Europe and was not able to contact moyan, Siv this is her real name. I talked to her shortly after she went to the rehab center and she was very upbeat about it. I just cannot believe that she is gone, I just met her and thought that we could get together often, we planned our future outings together. Moyan, my friend I will miss you and your humour, I was privelaged to get to know you in private and will always cherish our moments together. Rest easy my friend.
390

Doug
08-08-2010, 10:59 AM
I've watched it, perhaps a bit obsessively, around 12-13 times. Each time, I feel a little lighter, and focus more of Siv's sweetness and good humor.

We have a lot to thank you for, too, Jolanta. For seeking her out, for the photo that personalized the words, gave her to us as a forum. That was nice!

More and more I feel we are a family, sometimes dysfunctional and argumentative, other time jokers and chefs, but more and mostly, concerned and caring, helpful on treatment details and hopeful for a cure, worrying about a change in or the weaking position of a friend's health (Sangye- I'm thinking of you right now.... Get better. Please!).

Sometimes I lose track of who's on first, so to speak, but, in my heart, I realize how much I love you guys, how much we are in this together, and how much we do for each other, in big ways and small.

elephant
08-08-2010, 11:22 AM
Doug that was sweet! I love you guys too! You will always be family!

jola57
08-08-2010, 02:10 PM
Thank you Doug, we all lost a good friend. I love you guys too and miss you terribly when I am away.

Sangye
08-08-2010, 09:52 PM
That was lovely, Doug. I feel the same way about all of you and really can't imagine my life without our little family.

Jolanta, I also want to thank you for visiting and calling Moyan. There's no telling how much joy it brought her, even in the days and weeks after. Acts of loving-kindness linger in the heart indefinitely.

jola57
08-09-2010, 06:31 AM
I can honestly tell you that she was so very happy that we remembered her. When I walked into the room I asked "Are you Siv?" she said yes, and then I said " and if I asked how are you Moyan?" she just laughed and clapped her hands and had this huge grin and it was as if we were long time friends. Our Moyan knew that we cared and thought of her and that brought great joy to her.

elephant
08-09-2010, 07:16 AM
So glad you were able to visit with her Jolanta. That brought a smile to my face knowing she felt cared about.

coffeelover
08-09-2010, 10:31 AM
although I have not been online for a while I am so sorry to hear about Moyan. Please accept my sincerest sympathies.
lisa

Sangye
08-09-2010, 11:04 AM
Jolanta, that is beautiful. Thank you for sharing it with us. :)

jola57
08-09-2010, 01:39 PM
I wanted everyone to know just how lucky we are in having each other, even in our darkest moments we always know that there are friends out there who care.

Col 23
08-09-2010, 11:34 PM
Jola and Doug thanks for sharing.
Col 23

Doug
08-10-2010, 04:14 AM
It seemed necessary. You are welcome.