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  1. #1
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    Default I miss you...

    Hi,

    Forgive me for being the emotional one around...

    I just miss you, my friends, many of you.. my wg family...

    It feels so quiet and empty and lonely here since my Batman flied high with his Batman's wings.. or am I the only one who feels like that ?

    Where are you my friends ? How are you doing ?

    I still need you in my life.

    And I love you ❤
    Alysia
    dx 2008


    Here, I found my sweet love, my beautiful Phil
    http://www.wegeners-granulomatosis.c...ggren-254.html
    http://www.wegeners-granulomatosis.c...continued.html
    During long scary weeks at the hospital, my sweetie used to tell me, what I keep on telling him:"your love is what I live on"
    Rest in Peace, my brave Batman, take care of your weggies from heaven, and get a place ready for me, next to you

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  3. #2
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    Thank you. I was thinking the same thing. It is different, however, when it is my son with wg and not me. Additionally, he is going thru a period where he is feeling well thank God. He was in Israel for almost three months (felt like three years) and he came back feeling good. His doctor now wants to keep an extra eye on him as his preds are below ten and his "allergy" (?) numbers are slightly elevated, which was an indicator prior to his last flare up. I am concerned that he is going to camp now for four weeks, and he will not be getting enough rest, that I am sure about. That being said, how are you? How is everyone?

    Sent from my SM-G920V using Tapatalk

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  5. #3
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    Quote Originally Posted by Aneinu View Post
    Thank you. I was thinking the same thing. It is different, however, when it is my son with wg and not me. Additionally, he is going thru a period where he is feeling well thank God. He was in Israel for almost three months (felt like three years) and he came back feeling good. His doctor now wants to keep an extra eye on him as his preds are below ten and his "allergy" (?) numbers are slightly elevated, which was an indicator prior to his last flare up. I am concerned that he is going to camp now for four weeks, and he will not be getting enough rest, that I am sure about. That being said, how are you? How is everyone?

    Sent from my SM-G920V using Tapatalk
    Thanks God that he is back home. Scary days in Jerusalem right now. I am glad that he is doing good. What numbers are those his dr. talked about ?
    As for the camp, I hope he can listen to his body and not overdo.
    I am doing much better. Wg flare is over and my colitis is controlled by budezon (a steroid for the colon).

    So, how is everyone ?
    Alysia
    dx 2008


    Here, I found my sweet love, my beautiful Phil
    http://www.wegeners-granulomatosis.c...ggren-254.html
    http://www.wegeners-granulomatosis.c...continued.html
    During long scary weeks at the hospital, my sweetie used to tell me, what I keep on telling him:"your love is what I live on"
    Rest in Peace, my brave Batman, take care of your weggies from heaven, and get a place ready for me, next to you

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  7. #4
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    I havn't been posting for a bit either. I do miss it. I am kinda in limbo since i saw Dr. Villa Forte in march. She agreed i need a new rheumatologist but she will treat me from a distance until i find one. Ive been trying for 4 months now to get in at one who did her residency at cleveland clinic under dr Forte, But having problems with my insurance. So i just keep trying. She gave me another name of Dr 3 and a half hours away that she would reccomend but i cant pull the trigger on driving that far when i know the first dr is working on accepting my insurance, just a matter of time. So....long story short i guess i dont have much to add. My health has been stable since i was at cleveland . Im only on 5 mg of pred which makes me pretty happy. I guess im guilty of being a poor weather friend. That sounds odd, but we weggies understand. Blessings to you all. I like your sentiment Alysia

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  9. #5
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    I miss you too, and everyone else.
    I guess it is Summer holidays for most members and they are off enjoying life, or they are finally winning over WG, and the are off enjoying life

    Many of us are friends on facebook, or are also members of WG pages on facebook and therefore don't tend to hang out on here as much, because we have other avenues of conversation - sorry Andrew

    I still jump on here every day. This forum was my lifesaver even before I was officially diagnosed, which helped me realise that although it's a crappy disease, I was going to live. What I didn't realise was that I was going to make some amazing friends in the process. Unfortunately some of them have been taken away from us, but fortunately many more remain

    It's so wonderful to read that you, Alysia, and many others are doing well.

    I personally, feel like I have control of WG and it no longer has control of me.
    I still have a stuffed nose and I still have joint pain, from RA & OA, and I recently had a cortisone injection for a torn rotator cuff in my shoulder, which they think is related to long term prednisone use, but other than that, all is good.
    I am currently on 1mg pred, 20mg MTX and 200mg Plaquenil.
    I still work full time and then crash in front of my computer after work, nodding off here and there until bedtime.
    I have managed to get a bit of travel in over the last couple of years, and have met some really amazing Weggies, Andrew included (I hope that calling you 'amazing' Andrew, makes up for the comment above about facebook ).

    Where are all of the original members? I hope they are all well.
    Love and miss you all. You are the ones that got me through.

    Big hugs to you Alysia and much love
    - and remember to always
    Keep Smiling
    Michelle


    Live your life in a way that you wouldn't be ashamed to sell the family parrot to the town gossip - WILL ROGERS

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  11. #6
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    Quote Originally Posted by im so blessed View Post
    I havn't been posting for a bit either. I do miss it. I am kinda in limbo since i saw Dr. Villa Forte in march. She agreed i need a new rheumatologist but she will treat me from a distance until i find one. Ive been trying for 4 months now to get in at one who did her residency at cleveland clinic under dr Forte, But having problems with my insurance. So i just keep trying. She gave me another name of Dr 3 and a half hours away that she would reccomend but i cant pull the trigger on driving that far when i know the first dr is working on accepting my insurance, just a matter of time. So....long story short i guess i dont have much to add. My health has been stable since i was at cleveland . Im only on 5 mg of pred which makes me pretty happy. I guess im guilty of being a poor weather friend. That sounds odd, but we weggies understand. Blessings to you all. I like your sentiment Alysia
    Thanks for sharing @im so blessed and for your kind words. Nice to see the face behind the name, in your new avatar. Hi there
    I am glad that you are doing good and I hope you can find a professional wg dr closer to home. It is tough to drive so far although I know weggies who do it.
    Maybe all of us just keep the wg beast quiet enough so that's why it is quiet here ?
    Alysia
    dx 2008


    Here, I found my sweet love, my beautiful Phil
    http://www.wegeners-granulomatosis.c...ggren-254.html
    http://www.wegeners-granulomatosis.c...continued.html
    During long scary weeks at the hospital, my sweetie used to tell me, what I keep on telling him:"your love is what I live on"
    Rest in Peace, my brave Batman, take care of your weggies from heaven, and get a place ready for me, next to you

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  13. #7
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    Quote Originally Posted by mishb View Post
    I miss you too, and everyone else.
    I guess it is Summer holidays for most members and they are off enjoying life, or they are finally winning over WG, and the are off enjoying life

    Many of us are friends on facebook, or are also members of WG pages on facebook and therefore don't tend to hang out on here as much, because we have other avenues of conversation - sorry Andrew

    I still jump on here every day. This forum was my lifesaver even before I was officially diagnosed, which helped me realise that although it's a crappy disease, I was going to live. What I didn't realise was that I was going to make some amazing friends in the process. Unfortunately some of them have been taken away from us, but fortunately many more remain

    It's so wonderful to read that you, Alysia, and many others are doing well.

    I personally, feel like I have control of WG and it no longer has control of me.
    I still have a stuffed nose and I still have joint pain, from RA & OA, and I recently had a cortisone injection for a torn rotator cuff in my shoulder, which they think is related to long term prednisone use, but other than that, all is good.
    I am currently on 1mg pred, 20mg MTX and 200mg Plaquenil.
    I still work full time and then crash in front of my computer after work, nodding off here and there until bedtime.
    I have managed to get a bit of travel in over the last couple of years, and have met some really amazing Weggies, Andrew included (I hope that calling you 'amazing' Andrew, makes up for the comment above about facebook ).

    Where are all of the original members? I hope they are all well.
    Love and miss you all. You are the ones that got me through.

    Big hugs to you Alysia and much love
    - and remember to always
    Thank you so much for being here, Michelle. It means so much for me and for others.

    I kept on smiling while reading your post here, between the flowing tears. Sorry.

    I am glad that your wg is under control. Is your shoulder less painful since the injection ? I keep you in my prayers so I ask God to help "Michelle and her family and her shoulder".

    I can see many friends on facebook and on the groups there, but I still feel that this group is MY first home as a weggie. Here is where I have found my beautiful Phil and fell in love with him. I miss the good old days here, when we spent hours here. When many friends were alive and active. When there was a spirit of playfulness. I know that it can never be the same again. Still when I need my wg family, it is to this group that I come. Sometimes I feel like there are people and there are weggies. Only weggies can truely understand me.

    Many hugs - over the oceans - straight to down under - carried to you by my Batman, Michelle, and much love from both of us.

    I will be glad to hear how others are doing. You are all dear to my heart ❤
    Alysia
    dx 2008


    Here, I found my sweet love, my beautiful Phil
    http://www.wegeners-granulomatosis.c...ggren-254.html
    http://www.wegeners-granulomatosis.c...continued.html
    During long scary weeks at the hospital, my sweetie used to tell me, what I keep on telling him:"your love is what I live on"
    Rest in Peace, my brave Batman, take care of your weggies from heaven, and get a place ready for me, next to you

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  15. #8
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    Just like all of you, this is my first place to go for support and caring responses. I also miss all the old friends that used to come here to share all their stories about everyday life with Weggies. It seems that there were many of us that had joined this forum around the same time. I do think that a lot of us are trying get out of the house and enjoy summer. I try to check in here now and then to check on everyone and meet new people to say Hi.I am really happy to hear that all is well with you guys and hope that others are doing well now also. Please continue to stay well and take care of yourselves.
    Jana


    It does not matter how slowly you go, so long as you do not stop!

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  17. #9
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    Thank you for being here @Jana, for your caring and kindness, support and friendship ❤
    Alysia
    dx 2008


    Here, I found my sweet love, my beautiful Phil
    http://www.wegeners-granulomatosis.c...ggren-254.html
    http://www.wegeners-granulomatosis.c...continued.html
    During long scary weeks at the hospital, my sweetie used to tell me, what I keep on telling him:"your love is what I live on"
    Rest in Peace, my brave Batman, take care of your weggies from heaven, and get a place ready for me, next to you

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