Where is everyone?

[MikeG-2012]

It's been awful quiet on here for a few days. Is everyone hibernating or something?

Happy Holidays everyone!!!!

santa-hat-cartoon-emoji-christmas-holiday-010-512.jpg

[NikkiNicole]

I've been working and exercising and trying to lose some weight. I've also had trainees while at work so I can do my usual scanning of the threads! Merry Christmas!!

[Pete]

I was wondering if something was wrong with the site.

Merry Christmas and Happy New Year to all!!!��

[Alysia]

Thanks for posting this thread, Mike. Please forgive me if my post will not be "in place".

I miss the good old days, when my beautiful dr. Phil was here. Most days it feels cold and lonely here. I am sorry. Some days I am not even sure if I am "allowed" to share what I feel.. I feel like that right now.. typing and deleting then typing again... not sure what will turn out when I will press the button of the "Post Quick Reply"...

And still, eventhough I dont know how much I am "allowed" to share, who will hear me, or understand, when I finally do share, it is only here. Not in my daily environment. Never at work, not much if any with family or friends. Not on facebook. I hate to overload others. What can I tell them: "I feel low and sick" ? No. I say that I am ok. And I dont look sick. So it works fine.

Only here I take off the "mask"... so thank you all for being here. I love you and I keep you in my prayers ♡♡♡
Merry Christmass ☆☆☆

[Gab122]

Thanks for posting this thread, Mike. Please forgive me if my post will not be "in place".

I miss the good old days, when my beautiful dr. Phil was here. Most days it feels cold and lonely here. I am sorry. Some days I am not even sure if I am "allowed" to share what I feel.. I feel like that right now.. typing and deleting then typing again... not sure what will turn out when I will press the button of the "Post Quick Reply"...

And still, eventhough I dont know how much I am "allowed" to share, who will hear me, or understand, when I finally do share, it is only here. Not in my daily environment. Never at work, not much if any with family or friends. Not on facebook. I hate to overload others. What can I tell them: "I feel low and sick" ? No. I say that I am ok. And I dont look sick. So it works fine.

Only here I take off the "mask"... so thank you all for being here. I love you and I keep you in my prayers ♡♡♡
Merry Christmass ☆☆☆

Dearest Alysia,
We hear you and want to hear you. Please always share with us. I'm sorry Phil is not here to support you.

It is at times a difficult road we are walking. I feel sad and scared tonight. I don't want to tell family that my kidney function tests are not ok. It's too close to Christmas for news like that. Or That my Dr. Is moving my next ritux up to 4 mos instead of 6. I just had ritux 2 days ago. There is glucose in my urine now, joint pain in my hip. I feel like I'm getting worse. I'm certainly getting very fat. But what did I do when there was blood in my urine? I ate a whoopie pie while I waited for my rheumy appt.
My eyesite is blurry.
I'm tapering pred and am now at 15.
Sorry to be so depressing.

In any case, I love you like a sister Alysia and am thinking of you and praying for you.

Gab

PS - I've been on Facebook weg sites Mike. Plus busy time of year.

Merry Christmas to you all! ... its about so much more than gifts isn't it...

[drz]

When it it hits minus 30 F tonight I might hibernate but then the internet and TV and books and indoor things become more important. I had noticed the forum was less active but attributed it to Christmas rush and busy activities like concerts and parties and other fun things people are doing.

[Alysia]

Dearest Alysia,
We hear you and want to hear you. Please always share with us. I'm sorry Phil is not here to support you.

It is at times a difficult road we are walking. I feel sad and scared tonight. I don't want to tell family that my kidney function tests are not ok. It's too close to Christmas for news like that. Or That my Dr. Is moving my next ritux up to 4 mos instead of 6. I just had ritux 2 days ago. There is glucose in my urine now, joint pain in my hip. I feel like I'm getting worse. I'm certainly getting very fat. But what did I do when there was blood in my urine? I ate a whoopie pie while I waited for my rheumy appt.
My eyesite is blurry.
I'm tapering pred and am now at 15.
Sorry to be so depressing.

In any case, I love you like a sister Alysia and am thinking of you and praying for you.

Gab

PS - I've been on Facebook weg sites Mike. Plus busy time of year.

Merry Christmas to you all! ... its about so much more than gifts isn't it...

Thank you SO much Gab, my sister ♡

Eventhough you came here only few months ago, I feel like you have being here for years, all the way, and that you know my beautiful dr. Phil. He sure knows you, as I keep you in my prayers and I ask him to pray with me, from his good place in the presence of God.

I am sorry that you have tough time and I totally understand how you dont want to upset your family. I do much the same.

As for rtx every 4 months, some weggies get it and are doing better. I think Geoff is getting rtx every 4 months but I am not sure. Please read Nikki's thread near, and see how fragile the 6 months are in keeping us away from flares.

As for your kidneys, might it all be a temporary reaction to the procedure that you had in the kidneys few days ago ? You said that they said that its not wg in the kidneys ?

Hang in there. Sending gentle hugs ♡

[Gab122]

Hi everyone,
I do feel like I've known you all so long I'm feeling a bit better today emotionally and my hip hurts a little less. So that's good. I worked today - I think that work is a good distraction for me.

As for rtx every 4 months, my Dr sent me an email. I'll attach her reply when I asked why she changed it from 6 to 4 mos.

As for my kidneys, I don't think blood in urine is from last week's procedure.
They went thru the artery to the mass but never embolized it. I don't think it would cause blood. It's possible the mass itself could cause blood tho. My Dr says she is not worried. And Yes, they say I have do NOT have wegs in my kidneys. Just an angiomyolipoma. My decrease in kidney function could be from (a) wegs of course or (b) from the angiomyolipoma displacing my kidney or (c) even from the prediabetes I know have.
If it (A) I just had ritux tues.
If it's (b) I'm going for an MRI in June to check angiomyolipoma (AML) and that can be moved up if kidney function declines.
If it's (c) I'm on a pred taper

So I'm doing better today. Tired but good.
Thx all!
Gab

[vdub]

HA! I just logged on to talk about why I've been AWOL. Two weeks ago I had my second total knee replacement. This one has been rougher than my first. I ended up in the ER 3 days ago with a heart rate of 37, so I got a complete scan for a blood clot of some sort. Nothing was found, but they took me off one of my blood pressure meds. Heart rate is still in the low 40's, tho. I'm not sure what the next step will be. I generally feel pretty crumby and very tired.

[mishb]

Arrgh vdub, this is not good please keep us posted.

I am on here everyday, but don't tend to comment much anymore.
Not because I don't want to, but because all of the amazing people, on here, have already given great responses. I would find myself saying "yep, what he/she said"

This forum was my lifesaver (as well as pred) in the early days and I can't do without it. Okay, now you can call me crazy

Alysia, don't even think that you can't say anything in here
Gab, Alysia is right, it feels like you have been on here since day one.

Mike, Nikki, Pete, Jana, drz & Victor - I'm glad you are all still around too.
Anne would be extremely busy with the market at Christmas time and I wish her all the best and hope she sells plenty.

A very merry, safe, Christmas to everyone reading and everyone posting.
Happy holidays to all that don't celebrate the Christmas tradition.
May 2017 be everything that we hope for, including a pain free year, no hospitals, and most of all, a cure for WG/GPA

Love to you all