This is a thread for those who have not posted recently and want to update

[coffeelover]

3/20/10
hello from Lisa (coffeelover) I am so sorry I have not been on fro a while. Busy, busy and some complications.
Last time I posted over one or two months ago....I was heading towards remission and tapering off the prednisone. well....unfortunately that was a short lived "remission" and after three weeks off pred, I was suffering from pain all over, having trouble breathing and suffered from general fatigue.
But, I ignored all these symptoms (the mind is an amazing thing) and did not make sense of the symptoms until I had my regular appt with tne ENT at Mayo in Rochester, MN. He promptly told me that I appeared to be developing stenosis in my trachea again and I should make sure my EnT in Mankato who did my original surgery should be at my beckon call. WOW! Talk about a wake up call!
I immediately scheduled appts with my ENT, Rhematologist and GP.
After a week of activity with doctors and after feeling sorry for myself that this disease did not actually disappear......I am now back on track with higher doses of prednisone and mexotrexate, but actually doing fine. I had a PFT test that indicated my trachea is not at the danger level for stenosis, not perfect, but still good. I will see my rhuemy again this next week and promise not to beg to reduce the prednisone. It is truely what keeps me from getting another trach put in and for that I am grateful.
I plan to have "cosmetic" surgery to get rid of the trach scar. I am finally ready to have another surgery and while she (my ENT surgeon) she is going to check the trachea just to be sure.
So yes....prednisone stinks! Yes,......I hate the yucky feeling I have the night I take the mexotrexate....and yes....I prefer not to be sick...but I have now come to more of an acceptance of the disease.
If you take anything thing from this rambling message...do not ignore symptoms ...get "em checked out and take the drugs as the doctor prescribes. LIfe is GOOD!
I will try to read through some of the thread since I have been absent, but I know for a fact that I will miss out on quite a bit becuase of my absense and I hope to not be gone so long this time.
Lisa Coffeelover (still drinking that one GOOD cup of coffee a day and then some......)

[Sangye]

Oh Lisa, I'm sorry this stupid disease bit you again. I'm glad they caught it in time, though. We've gotten a lot of new members since you've been on. So many wonderful people to get to know! Glad to hear you're keeping the coffee at one cup. :D

[pberggren1]

Oh Lisa!

Thank God you have good doctors!

I was thinking of you last week and thought that you must be doing fairly well health wise and probably very busy at work.

I should have sent you an e-mail long ago to see how you were doing.

[JanW]

Hey, Lisa -- I was thinking about you after my SS surgery and wondering how you were doing; thanks for posting. I forget now -- did you have your windpipe surgically dilated as well?

[moyan]

Hi Lisa, bad & good news, nice to see you back, such a comfort to have this site.

[elephant]

Hi Lisa, sorry to hear about your symtoms but glad you are alive! We missed you!

[patricia]

Hi Lis, Im new my name is patricia Sorry to hear about what happend. Just stay focus and take it one day at a time. dont get to over welmed.
I am havingtrouble getting bck on this site to where i posted this morning. i was to do with new comers help please thanks

[Doug]

Welcome back, Lisa, if for the wrong reasons. I've been off myself for awhile (the forum ~ you guys are such characters!), only to catch up with your news. Take care, listen to Dennis and your doctors.

[Cindy M]

Hi Lisa, I also am guilty of being off the site for quite a while. I am sorry things didn't work out better for you but you. I have been spending a bit more time here just trying to catch up but alot of information to go through. Wishing you the best.

[jola57]

Hi Lisa, I hope that the pred and mtx does its thing. You were just like me, 3 weeks after tapering I was bleeding from the lungs. they put me back on cyclo for 12 months. I am glad the surgery is holding and you can get the scarring taken care of.

[andrew]

Greetings...
I'm kinda back. Will be in here more frequently now. Been going through a lot of stress lately. Separated from the wife and other issues as well. I have found a great new place to live and am slowly doing my own thing. I have a my quarterly checkup this Friday so will find out how the Wegs is going. Surprisingly though I feel ok Wegs-wise but the blood tests will tell a tale I'm sure :-) Glad to see so many people on here and contributing! I note we cracked 500 members a while ago!

[elephant]

So sorry to hear that Andrew. Take care of yourself, as you know stress can make our big bad WG worse. I wish you well and say some prayer for you. Thanks again for this Forum. You have done a great thing helping all of us.

[moyan]

Andrew, you get my Nobel prize, and I am Swedish so it's genuine. 3 months ago I knew nothing about wg, today.................

[Sangye]

Hang in there, friend. We'll help you through this. :)

I'm glad you'll be back on more. We really missed you!! Thank you for keeping the forum running this whole time. We have so many new members and so many who post-- it's awesome! It's really grown since I joined in Nov, 2008. I'm so grateful for you and for this group. :)

[renidrag]

That goes for me too Andrew, I knew nothing about this disease and have learned so much thanks to you and all the wonderful people I have met here. Thanks again and know Debbie and I will be thinking of you.
Dale

[DEE]

thanks from me too the forum helped hubby to deal with me having the wg in the beginning and for the past few months myself deal with alot of issues doing recent flare
wishing you all the best on your move forward
thats for giving me the chance to post with so many kind and caring people DEEx

[Lightwarrior]

Andrew, you get my Nobel prize, and I am Swedish so it's genuine. 3 months ago I knew nothing about wg, today.................

I'm not Swedish, but I agree with Moyan. You have been a lifeline for us, I'm sending you light, energy and grattitude to help you through your changes.

[Doug]

[email protected]

I had a message today from Jack. He had a fall down some stairs and is in hospital. He said he broke his knee and messed up some other parts. The link about is to him at the hospital. He says he can't access the forum, though, couriously, he was able to access my blog and leave his message. I'll post any further messages from him.

Andrew- I'm saddened to hear things are going poorly as far as your marriage. Watch the stress! (I know how that goes, but do your best....) One of the threads recently started on the forum was about how the family is affected by having a member with this disease. It definitely is a vein we haven't tapped that deeply since I've been on the forum, around a year. I started posting on it because of the lively nature ("pugnacious", "contrary", "in-your-face" qualities of the posters, in short, just like family! I joke. Family, indeed, but caring, concerned, helpful, opinionated oftentimes, but the best resource I stumbled on since being diagnosed with WG. Bless you, my friend, for what you've created and fostered with your skills, time, patience, humor ("humour" for you in the part of the English-speaking world who know how to spell the language), understanding of the issues of the Weggie community world-wide, and Aussie pluck. What a man!

[DEE]

sorry to hear about jack i sent a a message today and wondered why he had not replied he always does
please send him my best wishes and tell him he's in my thoughts as he has always been a great support to me
always straight to the point thanks jack
thinking of you DEEx

[Sangye]

Thank you for posting that, Doug. I had a bad feeling something had happened to Jack. We didn't hear from him at all yesterday. Poor guy--this must be awful for him. I'm emailing him right now... :(

[moyan]

My best wishes jack!!

[elephant]

Hope Jack starts to feel better. So sad to hear that.

[andrew]

Thanks all for the kind words.

Jack! Get better quickly mate will be thinking of you. We'll keep your seat warm here :)

[pberggren1]

I wish I was there in person to comfort you Andrew. I cant imagine what you must be going through right now.

Thanks Doug for the update on Jack.

Let us all pray for Jack and Andrew right now.

[Lightwarrior]

Heal quickly Jack, I hope you are home soon. I will miss your posts.

[Lightwarrior]

I live in Yuma and our house shook so hard that for the first time ever during an earthquake I made everyone go into the street. The 7.2 quake in Mexico was close. Mexicalie is only 60 miles away and that is where most of the injuries and the two deaths occured. Some of my friends here lost power, I did not. Many aftershocks. We live on sand here, the house I rent is only five years old so it took the shaking better than some. I felt dizzy right before it hit. Car in the driveway looked like it was dancing.

[elephant]

Wow! Glad you are OK. It is weird with all these earth quakes. I guess the earth is shifting their plates. I think that will have more earthquakes very soon. Hopefully nothing deadly like Haiti!

[Sangye]

So glad you're okay! I lived in Orange County when the big quake hit in 1989. I'd been through a lot of them before but that one was so weird-- like the ground turned to water. They usually felt like jolts or just rumbles before.

I hope this quake relieved the pressure in the plates for a long time to come.

[Col 23]

Hello my fellow Aussie.
Hope things look up for you. Im currently in your place of diagnoses, Darwin for a few weeks. Very hot but dry season starts soon I hope.
I too have appreciated the effort you have put into this group and find it most helpful.
cheers Col 23

[Col 23]

My thoughts are also with Jack for a speedy recovery.
Col 23

[Lola]

Thanks, Doug, for the information on Jack. Please let him know that we really feel his absence, and wish him my best.

[Lola]

I live in Yuma.... The 7.2 quake in Mexico was close...

I thought about you, Lightwarrior, upon hearing the news of the quake. So glad you and your loved ones are all OK. That's a bit of a biggie, 7.2!

[moyan]

It's a bit scary, we know they expect a real big one up here some day and this last one was not to far away. Faults are active.

[Sangye]

Faults are active.
LOL-- mine sure are. :D

[Lightwarrior]

LOL-- mine sure are. :D


ROTFL...maybe that's why I wasn't scared, my faults were bigger than the one shaking in the earth

[gwenllian111]

Get well soon Jack xx

[Doug]

I live in Yuma and our house shook so hard that for the first time ever during an earthquake I made everyone go into the street. The 7.2 quake in Mexico was close. Mexicalie is only 60 miles away and that is where most of the injuries and the two deaths occured. Some of my friends here lost power, I did not. Many aftershocks. We live on sand here, the house I rent is only five years old so it took the shaking better than some. I felt dizzy right before it hit. Car in the driveway looked like it was dancing.

Gad! Glad to know you came through the 'quake unharmed! I think I'd feel lightheaded myself, Lightwarrior, if the very ground I stood on didn't stay still! I've never experienced a noticeable 'quake in Nebraska, though we've had minor ones in my lifetime. Main thing: you and yours are safe!

[jola57]

Lightwarrior, glad you came out ok, we have had some here in Vancouver too, one a number of years ago has left permanent damage to our house, a deep crack in a wall that just will not stay repaired, how is your house?

[elephant]

Wow, Jolanta I would never think of you guys having a earth quake in Canada. I guess it can happen anywhere.

[jola57]

yup but at least very rarely

[Lightwarrior]

Lightwarrior, glad you came out ok, we have had some here in Vancouver too, one a number of years ago has left permanent damage to our house, a deep crack in a wall that just will not stay repaired, how is your house?

The house we rent was only built 5 years ago so it is up to code. No damage at all, sidewalk though is buckled up in one place and 2 inch crack in another place. There was a 5.2 afterschock today, I was on the road between grocery store and home and didn't feel it, but Alexis and Christopher had to get under their desks at school.

[jola57]

Must have been scary for them.

[Lightwarrior]

I made a game of it when we rushed into the street so they wouldn't be scared, so they thought it was cool when they got under their desks in fact Alexis told her teacher that her Grandma told her to lie next to her desk because if the roof cave in the desk would crush her and the area next to her desk would give her space to survive. I learned this from a trainer we had for the Crisis Incident Stress Management (CISM) who was at 911 World Trade Centers, many major earthquakes around world. As things collapse you die if you are under something, but if you lie next to or curl up next to something that is substantial, a desk, a bed that will leave space beside it when it is crushed and compressed you stand a chance. He said he has found no live survivors who were under something. I suppose if it was mild and only ceiling tiles were falling, under would work.

Brianna, my 2 year old (soon to be 3) ran up to me Sunday night, turned around shook her little bootie and said, Grandma, look at me I'm an earthquake. What a character

[Sangye]

I'm an earthquake....hilarious! :D

[katwoman]

Hi Lisa, I haven't posted for a while either, there never seems enough hours in the day and life does not slow down for anyone!

I totally understand how you feel about pred & methotrexate, I was hoping that mine would be tapered down (since my flare up last november) but unfortunately my sinus aren't behaving and since being back to my ENT (now I see him on a weekly basis to have them cleaned out) he has decided that it needs to be increased and not decreased as my Rheumi had suggested :-( not happy about this as you can expect....

Anyway, just wanted to drop in and say hello to everyone and let you all know that I do constantly think of you all and hope you guys are all doing ok.

[elephant]

Katwoman, how much prednisone are you on? I am currently weaning off prednisone for the third time. The Rheumy thinks if I can't get off prednisone....that means I am having a WG flare...she wanted to increase my cellcept, but the other doctor does not think that is good. I am seeing my WG specialist in June. In the mean time I am on duty alert for ear,eye and sinus symptoms getting worse. I am guess when our sinuses are inflamed we can't smell. It is off and on with me. It is so annoying...especially if you go out to a fancy restaurant which I don't do much at all. Order food and can't taste it. Oh, I thought today was going to be the day that I tasted food!

[katwoman]

Hi Elephant, ENT wants me back on 20mg (was on 15mg hoping to reduce to 10mg). My sinuses are really taking a battering at the moment, it is so tender up there and like you I miss my sense of taste and smell, I take big sniffs when I am eating or drinking something nice, but alas it doesn't help, worth a try though, lol!!

Make sure you stay watchful of your ear/eye and sinus symptoms, you definitely don't want them getting worse, my recent sinus infection actually pushed the DCR tube I had in my left eye out, woke up in the morning with the tube sitting across my eye (very uncomfortable), unfortunately they couldn't save it, but the ENT said he isn't sorry it has come out as he thinks alot of the sinus infections is worsened by the tube being a foreign object in my sinus area.

[elephant]

Well Katwoman lets hope you and I can get off this stupid prednisone without flaring! I am hoping for some good answers when I go to Cleveland Clinic. Your on methotrexate too? I will keep you updated on the prednisone stuff. Let me know how your doing too. :)

[katwoman]

Yes Elephant, it would be wonderful to get off the Pred...it's not a friend I would like to keep in contact with ;-) hehehe. Yes i'm on 25mg of Methotrexate once a week, not a big fan of that one either, but at least my energy levels and joint pain have improved.

Please keep me updated on how you go, I read this web page pretty regularly but don't say much, which is unusual because in real life I always have heaps to say...lol much better verbally then with the written word!

[Sangye]

Kat, If you can't get below 20mg pred without major sinus issues, it makes me wonder if the mtx just isn't strong enough. Many docs increase the pred instead of changing the main immunosuppressant. Needing to have your sinuses cleaned out every week while on 15m-20mg pred doesn't seem right to me.

[Lightwarrior]

Whoo hoo, I'm on my third day of going from 45 to 40 of Pred, I have to restart Ctyoxan tomorrow at 200 instead of 250, makes me a bit nervous. Rheumy says I'm still active and we have to back it off, I have to see him every week and he is calling me when he doesn't like my labs. He is making me take one more week off so I'm tryng to rest my body as my spirit is anxious to get back to work. He has started me on bactroban ointment for my nares.

[Sangye]

I hope it goes well for you! :)

[elephant]

Hope it goes well with you too Lightwarrior. I have been told about the Bactroban ointment to keep infection away too. It was prescribed to me when I had my Video assisted thoracic surgery last year. I had to gargle this strong stuff to decrease bacteria and bactoban in my nose. LIghtwarrior hope your feeling better being on less prednisone. :)

[FallGirl]

Hi everyone. I wanted to post an update on my health because unfortunately, after feeling fine for months, I think I'm experiencing a flare up. I have had a headache for days, I'm having sinus problems, some chest pain and just a blah feeling and no energy. I've been off Prednisone since last year, I'm just taking 150mg of Imuran and I've been fine up until now.
I'm going to see my Doctor on Friday, they found something so I'm anxious and nervous about that. I figure it's back to Prednisone but whatever makes this go away for a while.
My life has been pretty different. My Dad passed away in November of last year. He had prostate cancer and the Doctor was pretty confident that my Dad would be okay but it got worse really fast. It spread into his blood and bones and he was so much pain. But my family was there with him when he died and as hard as it was I'm glad I was there. But i'm finding it hard to get to blood tests and Doctor's appointments because I have social anxiety and can't get around myself and my brother doesn't always want to drive me around even though it's important. A friend of the family is taking me to my appointment on Friday but he has his own health problems and I feel bad calling him to drive me around even though he doesn't seem to mind. So things have been hard, I've been kind of sad lately.
Hope you're all doing good.
-Fallgirl

[jola57]

Sorry to hear about your Dad FallGirl. \now is the time to take care of yourself. I hope this flare is just temporary and you get back on track soon.

[Lola]

I am so very sorry, FallGirl for your loss. You have been under a tremendous amount of stress - the very worst kind. I, too, hope this is just a temporary flare. Do know that even those of us who don't post very often are thinking of you!

[elephant]

Sorry to hear that Fallgirl. LIke Lola stated you have been under alot of stress, hopefully this is a minor flare. Mabey they need to switch the medicines a bit. Keep your chin up and sorry your feeling sad. Keep us updated.

[Sangye]

FallGirl, I'm so sad to hear about your dad. I can't imagine how difficult that must be, along with facing a flare. Please take care of yourself and keep us posted on how things are going. We care about you. :)

[Cindy M]

So sorry to hear about the loss of your dad. That stress alone is alot to deal with, without the flareup of WG. I hope everything goes well on friday. Let us know how you are doing.

[Col 23]

Hi Fallgirl
Hope your feeling a little better, it is frustrating when you feel dependent on other people and sometimes its difficult for family and friends to totally get this disease.
It takes a while to work through grief. I hope you dont mind but a few suggestions that may or may not work for you when you feel sad about your dad, if it helps just talk out loud to him. Look at old photos and talk about him to other family members. Its okay to feel sad but you may want to talk to your doctor about your feelings if your getting really low. Also medication can make you feel really depressed at times. I wish you the best and I hope all goes well at the docs.
cheers Col 23

[Lightwarrior]

Fallgirl,
I like Col 23's advice. Give yourself time to grieve, your grief is your own and you wll heal in your own time. I lost my Mom and Grandmother within 4 months after having them live with me for 7 years. At the end of each season I held a ceremony thanking the universe for allowing me to get through that season without them and for help to make it through the next season. On the first anniversary date of thier death myself, daughters and grandchildren wrote messages on balloons and set them free for them. We have a large candle for each of them and still burn it on holidays, special events or just when we have a day that we really miss them. I think Col 23 has a good idea to use objects, photos etc to link us to our loved ones, it is painful at first but for me I find that telling thier stories now brings me laughter and comfort, in the beggining it did bring pain and tears of loss mixed with the good memories, the tears have changed from sadness to joy. Whatever your path, it is your own. We will be happy to honor that with whatever you need from us. I am sorry for your loss.

[Sangye]

I love our group. :)

[elephant]

So do I. Wonderful people here!

[coffeelover]

I agree. I love this group!

My update....went to see my rhuemy yesterday. Nothings changed so that is good. I will go see her again in two months. Still on MXT and PRED
last month I saw my ENT in Rochester who specializes in WG and he told me unless I have a flare, that he will not need to see me for a year.
Had revision/scar surgery 6 weeks ago and used this opportunity to have them cosmetically make my trach scar disappear. So fa r so good!
Still working! Not playing enough! But feeling good! Weather helps.

[Brooke]

Glad you are feeling good coffeelover!! I too go to Rochester, what is the name of your ENT?

[elephant]

Glad that things are stable for you.

[Col 23]

hi Coffeelover
Glad to hear your feeling okay. Hope it continues to stay stable. I noted you stated not playing enough, its hard to balance the pie at times but you will get there.
cheers Col 23

[Sangye]

Hey Lisa, that's great news. I hope things keep getting better and better for you. :)

[coffeelover]

Glad you are feeling good coffeelover!! I too go to Rochester, what is the name of your ENT?


Brooke,

My ENT is Dr Friedman. Who is yours?

[DEE]

good news that your feeling good coffeelover DEEx

[DuaneHart]

Glad you have good news, Lisa! I am still hanging in there. My rhuemy and GI doctors are trying to taper me off the pred, AGAIN! I was down to 10 mg just before Easter and my Ulcerative Colitis came out of remission after 13 years. I spent 6 days in the hospital due to dehydration and loss of blood but things are getting better. Took a fall a few weeks ago and tore the meniscus in my left knee so will be having surgery to repair that in June. Walking around with a cane stinks! The doctors said that it was due to the prednisone causing the tendons and ligaments to become thinned. I HATE THE PRED!! But, things will get better. Hope everyone is doing well and have a nice Memorial Day weekend.