Where is everyone?

[MikeG-2012]

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

Happy Holidays everyone!!!!

2540

[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. [emoji26]

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. [emoji21][emoji15][emoji849]
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.

[blu4runner]

Still here going to Philadelphia in 2 weeks for DR appointment and Rituximab infusion. Busy trying to meet company year end goals
Hope all have a Merry Christmas and the New Year brings better health to us all

[Jaha]

I think it seems to not only be a busy holiday season, but is also time for a lot of wegs rtx season! I am wishing everyone all the best for both!

[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. [emoji26]

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. [emoji21][emoji15][emoji849]
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
http://uploads.tapatalk-cdn.com/20161216/f3694c884173903f7ad2aaf5bda2f4ad.png

[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 :crying: 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 :razz:

Alysia, don't even think that you can't say anything in here :love:
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

[Alysia]

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.

So sorry, vdub. I hope they can find soon whats going on. You had enough this year. May 2017 be a year of health, joy, and great trips in your RV. (Thats how you call that big car of you ?)

[Alysia]

Arrgh vdub, this is not good :crying: 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 :razz:

Alysia, don't even think that you can't say anything in here :love:
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

Thank you from the bottom of my heart, Michelle. I love you.

2541

[vdub]

So sorry, vdub. I hope they can find soon whats going on.
About 2 hrs after the last post, I went to the ER with shortness of breath, low heart rate, dizzy, etc. A review of my med records show that all of my running paid off with regard to the heart rate. But, they did a ct of my chest and found what looks like new granulomas. I'm spending the night in the ER. They aren't sure if it is granulomas and a flare or pneumonia. Since I have consistently rx'ed pneumonia vaccines and I haven't been anywhere where I might pickup pneumonia, most money is on it being a flare. More tests are due tomorrow.

The hospital is full tonight and they don't want to do a x-town transfer, so I'm actually staying o'nite in the ER. Now this is an education! Saturday night in the ER! I'm in my own room, but the sounds I hear are quite entertaining!

[Geoff]

Sheesh Vdub, sorry to read your news, wishing and praying for a better start to the New Year!

Michelle I love your style!! You were there, along with others whom I cannot name for fear of missing someone out in MY early years when, as you stated, the Forum was a god send, a crutch, a bright light in the darkness of WG to help me navigate my life.

I was on the forum 24/7 and it helped me immensley, just recently I was able to travel and meet up with some of those people in person, and for those of you who have experienced this sensation, you will agree, it is the very best of feelings.

So, as for me right now, I dip in now and again, just to see who is doing what and how you guys are going. I keep in touch on a more day to day basis via FB which I enjoy, I try to keep upbeat and not too bogged down in the minutia of the illness, it will not dominate my life as far as I am able.

To all of my fellow Weggie Warriors out there, I love you ALL and wish you just the very best for now and for the New Year.

[Alysia]

About 2 hrs after the last post, I went to the ER with shortness of breath, low heart rate, dizzy, etc. A review of my med records show that all of my running paid off with regard to the heart rate. But, they did a ct of my chest and found what looks like new granulomas. I'm spending the night in the ER. They aren't sure if it is granulomas and a flare or pneumonia. Since I have consistently rx'ed pneumonia vaccines and I haven't been anywhere where I might pickup pneumonia, most money is on it being a flare. More tests are due tomorrow.

The hospital is full tonight and they don't want to do a x-town transfer, so I'm actually staying o'nite in the ER. Now this is an education! Saturday night in the ER! I'm in my own room, but the sounds I hear are quite entertaining!

So sorry vdub. I hope that you are already out of the ER. When I was with Phil in the hospital I learned that heart rate can indicate lungs issues.
I hope they can find for sure what's going on and give you the best treatment asap. Prayers and love to you ♡♡♡

[Pete]

Vdub,

Hope you've escaped the ER. Also hope they find out what's wrong and get it taken care of.

Merry Christmas and a Healthy and Happy New Year!!

[blm]

Sorry to hear that. I hope you can get some rest at some point. Thinking good thoughts for you.

[vdub]

Well, they have moved me from smallish local hospital to larger regional hospital. They were going to do it with a helicopter, but there was heavy fog at the landing zone, so I had to endure a 2 hr ambulance ride. The pickup chassis that they build ambulances on aren't made for comfort.

Maybe someone can help me assess this or do some goggling on it.... I have had two doctors now mention that some research has pointed to wegs as a cause of damage to conductive nerve tissue. I hadn't heard this before, but I now have two conductive nerve conditions. The first was my paralyzed diaphragm and now the second. This one has to do with the nerves controlling the heart. Of course, there are many things which could cause the heart nerves to go bad -- age is one and I'm certainly to that point (65). Anyway, I'm at the larger hospital to "probably" get a pace maker in a few hours. My smaller local hospital does pace makers (actually, my brain surgery was done at the local hospital), but I'm now considered a particularly complex situation, so I have about 5 doctors looking at me to determine the next step. All fun....

[txrepub4God]

I'm here - haven't been online (well, on social media-type sites) much any more. Got off Facebook this past summer because of the constant negativity us human beings share online these days. Plus, I've been pretty ill for most of this entire year and since it is now December, I'm a bit exhausted by it all. So anyway, I'm here, but down, exhausted, sick, and exasperated. I pray that the Good Lord blesses everyone on this board in the new year with better health, as ya'll have blessed me during my times of need. Love to all my Weggies!

[Alysia]

Well, they have moved me from smallish local hospital to larger regional hospital. They were going to do it with a helicopter, but there was heavy fog at the landing zone, so I had to endure a 2 hr ambulance ride. The pickup chassis that they build ambulances on aren't made for comfort.

Maybe someone can help me assess this or do some goggling on it.... I have had two doctors now mention that some research has pointed to wegs as a cause of damage to conductive nerve tissue. I hadn't heard this before, but I now have two conductive nerve conditions. The first was my paralyzed diaphragm and now the second. This one has to do with the nerves controlling the heart. Of course, there are many things which could cause the heart nerves to go bad -- age is one and I'm certainly to that point (65). Anyway, I'm at the larger hospital to "probably" get a pace maker in a few hours. My smaller local hospital does pace makers (actually, my brain surgery was done at the local hospital), but I'm now considered a particularly complex situation, so I have about 5 doctors looking at me to determine the next step. All fun....

You are a tough guy, vdub. No doubt. Hang in there. I hope the pace maker will soon help you feel better.

I try to google what you asked. Not sure if this is what you are looking for... but those are good articles:

http://www.medscape.com/viewarticle/733606

Wegener Granulomatosis Neuropathy: Types of Neurologic Involvement, Clinical Presentation, Differential Diagnosis (http://emedicine.medscape.com/article/1146811-overview#a1)

Most of my search brought up articles about neuropathy.

Please update us. Sending prayers ♡

[vdub]

I couldn't get into the medscape, but the other was useful. I think I'll start a new thread.

[drz]

Well, they have moved me from smallish local hospital to larger regional hospital. They were going to do it with a helicopter, but there was heavy fog at the landing zone, so I had to endure a 2 hr ambulance ride. The pickup chassis that they build ambulances on aren't made for comfort.

Maybe someone can help me assess this or do some goggling on it.... I have had two doctors now mention that some research has pointed to wegs as a cause of damage to conductive nerve tissue. I hadn't heard this before, but I now have two conductive nerve conditions. The first was my paralyzed diaphragm and now the second. This one has to do with the nerves controlling the heart. Of course, there are many things which could cause the heart nerves to go bad -- age is one and I'm certainly to that point (65). Anyway, I'm at the larger hospital to "probably" get a pace maker in a few hours. My smaller local hospital does pace makers (actually, my brain surgery was done at the local hospital), but I'm now considered a particularly complex situation, so I have about 5 doctors looking at me to determine the next step. All fun....

Moved [VW] -- good comments, drz. I moved them to the new thread (http://www.wegeners-granulomatosis.com/forum/general-wg-chat/5509-conductive-autonomic-nerve-damage.html) I started on this subject. Thanks, vw

[pfries]

I have to admit I do way more reading than posting, that being said I drop pred drops in my eyes several times a day.
The blood vessels in my eyes have been compromised. I can increase the screen font to make it a bit more comfortable to read,
but alas the keyboard stays the same size and I not an accomplished typist :blushing:.

Know that I do follow along and you all stay in my thoughts and prayers.

Happy Holidays to all!

Pat

[annekat]

I've been on Facebook a lot, and a bunch of us from here go there, too, especially for some special groups that have evolved around Wegs and other vasculitis, as well as for general purposes with friends and relative. I'm trying to do better at checking into the forum, too, as it is my first loyalty.

[chrisTIn@]

Happy Holidays everyone!!!!

2540

Nice initiative MikeG.
Happy Holidays to everybody on the forum.

[gilders]

Just a quick "hello" and Happy New Year from me.
I've been away from the site due to house move and continuing to organise kidney transplant. To be honest, it's a stressful time at the moment and I'm trying to avoid thinking about health issues.
Wishing you all a healthy year ahead.

[Pete]

Just a quick "hello" and Happy New Year from me.
I've been away from the site due to house move and continuing to organise kidney transplant. To be honest, it's a stressful time at the moment and I'm trying to avoid thinking about health issues.
Wishing you all a healthy year ahead.

Hope everything progresses as hoped and planned...

[greenjeep]

I too have slacked a bit in posting to this forum. It has gotten me thru some rough patches - just don't check as often when I'm not feeling bad. (Sorry) but I have had a while slew of new issues crop up since October '16, so I thought to check in today.
Happy New year everyone! Here's hoping that 2017 finds a cure and we all participate with success.

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