New to site

[greenjeep]

Hi all. Had my issues signing up, but I've been browsing the forum for several months now. Glad to finally be able to have input.
I am a 43 y/o male living in west Texas - United States.
I guess i start with my story (briefly). I was diagnosed in January 2010. I had a limited case then - confined to the sinuses. I had lots of sinus and ear issues and extreme fatigue. It took about 6 months to diagnose Wegener's. My rhumy put me on cytoxan tablets for 6 months and i reached remission. Then I started methotrexate and ran with that for about a year.
My ANCA began to drift back somewhere in the middle of 2012, and then the blood in my urine began to increase. My rhumy decided to have me do a series of 4 Rhetuxan infusions. I only made it through 2. I went into the ER on the 22nd of December 2012 with what i thought was tracheal stenosis. My trachea was fine, but my bloodwork came back showing I was in renal failure. I had no idea. I was admitted and spent the next 16 or 17 days in the hospital. I never had to do dialysis, but I did several other proceedures (several a day). anyway, I am doing better now but looking to do even better as time passes.
I am currently doing cytoxan infusions monthly and tapering steroids.
I guess the biggest issues ive had are with depression and a feeling of uselessness with my 9 y/o daughter and feeling like a burdon to my wife. I was used to being active and outdoors, now i am content to sit around the house. hopefully i will feel more active once i am off the cytoxan.
Anyway, this is the first time i have really talked to anyone outside my family about this disease and around here, no one has ever heard of it. it feels good to have some like minded folk to bounce things off of and try to offer support when I see someone else in my predicament. So, I am not much of a forum guy or blogger type, but i hope to get involved here. Good to have this opportunity.

Terry

[Dirty Don]

Hi Terry, welcome to the most open & informative blog on WG. You'll find lots of good & meaningful info on here as well as shared experiences and a whole lot of empathy from people who DO understand what WG is about. Glad you have entered this slightly strange but wonderful space! Yes, it will take time for you, your docs, and your meds to get a handle on this...be patient, not just a patient! I hope you have some WG experienced docs, and I hope your family is learning to understand also. In that respect, don't feel guilt for having changed...it's not like any of us chose this...heck, most of us don't even know what 'it' is and neither do the docs. One thing you and your family must understand is that, for now, WG is forever...sighs one more time! It appears that either your docs did not correctly diagnose the severity of your case in the first place or WG has taken a turn for the worse. Either way, it can be corrected provided the correct and most helpful course of action is taken. We're all different levels in here, and what works for one may not for others. Most of all, keep a good attitude as it seems that will be one of your best allies in the long run. Best of luck to you & feel free to ask & share all that you want!

[andrew]

G'day Terry, welcome!
I'd say that you were extremely lucky to have been diagnosed prior to the kidney failure. Precious time could have been wasted if not. The Cytoxan will almost certainly drain your soul and not help with your energy levels. However also keep in mind that your body has been through the meat grinder and is slowly, with the help of several magical pills that you're taking, healing itself as much as it can. That takes a lot of energy which can also leave you feeling drained. As I'm sure you're aware by now one of the main problems for WG sufferes is fatigue. It's part of the whole 'suite' of issues and part of the 'new normal' that we are presented with. Levels of fatigue differ from individual to individual and can change as time goes on. Give yourself the best chance by not overdoing things.

Speaking of the new normal, I don't have kids so I don't know what that's like but maybe there are other things you can do (f you're not already, like watch a movie or a TV show together, play a board game - I dunno what 9 year-olds like As for being a burden, I'm sure your wife doesn't think that. When I had just come out of hospital, I would drag myself from bed to the couch and sit there most of the day - We had Cable YAY!!! Not much I could do as far as any activity was concerned so I tried to help with cooking stuff where I could have a chair and do stuff from the sitting position. It was kinda fun trying to do stuff from a new perspective Just relating my experience hoping it might help.

There's a thread on fatigue that might be worth a read if you like (although it's quite long and can cause fatgiue just reading it haha <- jokes): http://www.wegeners-granulomatosis.c...0-fatigue.html

This has been useful for many people too: The Spoon Theory written by Christine Miserandino | But You Dont Look Sick? support for those with invisible illness or chronic illness

Look forward to seeing you around here!

[mishb]

Hi Terry and welcome.
I'm glad you finally made it on to this terrific, sometimes hilarious, but always helpful, forum.

I don't have anything else to add to what Don and the Chief have said except to say that the fatigue most times gets easier.......give yourself time.


Take care and as always.........

[shannonkop]

Hi Terry

I was diagnosed at 31 with a ten year old and twin 7 year olds. I know exactly how you feel. I am 37 now and still on methotrexate but i definitely feel like I am in the best shape of life now. Give yourself a break to get threw this time and know that it will get better. You are not a burden and am sure your wife thinks she is blessed to have you around. take care and we are here for you.

Shannon

[Barbara N]

I thought my husband and others would be repulsed by me so I became very anti social. It turns out to be just the opposite, my husband and children are very proud of me, My grandchildren don't care that Mima wears a patch on her nose because I play with them. Pretty soon you will be able to recognize the phases that you are in and if you are in need of medication etc. It is all a learning process and you end up knowing more that a lot of the doctors in the end. You will find lots of help and compassion and make friends here on this forum. I am also new to the forum but a veteran with WG. Welcome to the group.

[RudiK]

Hello Terry, I'm glad you found this site, although I wish you didn't have a need to find it. I, as well as everyone here, knows the suffering you are going through. The lack of energy, the depressing moods, the mood swings, etc. I'm 69 and don't have any small kids anymore, my two grand children live far away (my son is in the military), and my wife and the rest of my family here in US are great supporters.
The people on this forum are absolutely great, their knowledge and support, albeit remote support, is fantastic. Ask questions and someone will have an answer.
Where abouts in west texas do you live? I'm in El Paso, about as west texas as you can get. Do you have any local support group?

Take care, I wish you all the best.

Rudi K.

[greenjeep]

Thank you all for the welcome and encouraging words. I can tell this kind of support and inrormation will help me cope. Rudi, I live in Lubbock. They call it west Texas around here but I guess it's more north.

[Alysia]

Hi Terry.
welcome to the forum.
I can understand your feelings.
maybe your daughter see you from another point of view: one of a daughter: for her you are the "big" father, object of admiration.
if not. maybe it is time to make it happen...
daughters do admire theirs fathers.
you can have quality time with her. listen to her, playing with her, learning with her. going for a walk. giving her attention. admiration can be mutual.
good luck.

[Jaha]

Terry,

I'm just catching up on some threads and want to welcome you to our group of wonderfull wegs. Please try not to beat yourself up about not being up to par, we have all done that and it really sucks not to be able to do what we used to do. After going thru that terrible scare and making it thru, I'm very sure your family is just glad to look at you. Let go of the guilt of being sick and enjoy the little things. Best of luck to you!