News of Jack

[vdub]

I still keep thinking that the folks at SLC might tell me that I don't have WG at all, but I'm not sure how that can possibly happen. The presence of the granulomatous hypophysitis is pretty unmistakable. Maybe my weg's will stay limited to the brain. I don't know -- all wishful thinking I suspect....

On 1Jan11 I had to go off the mtx in order to have a knee surgery. I was supposed to go back on mtx on 1Feb, but I have stayed off. I'm thinking it might give the rheumy a cleaner shoot at seeing something in my lungs, kidneys, whatever, but not sure if that is flawed thinking or not. I figured an extra week of mtx wouldn't hurt anything.

I would credit my "feeling fantastic" to being off the mtx, but I started feeling good about a month before going off the mtx. My endo increased my steroids by 10 mg (now 30mg/day), so that's probably the reason.

[Geoff]

I think this just goes to show how individual this disease is to all of us. We all react differently to various meds and at times there is no rhyme or reason. I have learnt to 'go with the flow' and not to expect anything apart from the unexpected!! I have been 'flying' since just before Christmas and made the mistake of fooling myself I had this beat, then two weeks ago it was like falling off a cliff. I was gutted. I felt dreadfull. Just to say Jack that hope springs eternal. We can all smile when the 'good days' appear, its how we cope with the bad ones. My thoughts and best wishes go out to you; on the positive side, lets hope we have seen off the worst of the winter and that Spring is just round the corner...Time for a beer in the garden? Oh yes and I am better, just returned from Town with my daughter and Fiance as we get ready for The Wedding later on this year. Its giving me a focus, and a pain in the wallet!!

[Sangye]

vdub, I don't think you should stay off the mtx. If anything, going off it shortly before your specialist appts clouds the picture. Mtx takes weeks to start working and if the Wegs is active you can lose time waiting for it to kick in again.

[Jack]

It is now 7:15 in the evening and I'm feeling much better and less sorry for myself. Still not great, but not too bad. Tomorrow will be a better day!

vdub - as Sangye has said, don't read across from other's condition to your own. There are no two stories the same with this disease and no way to predict which direction it may take or how drug side effects may change your life. I have had 15 very good years and had I been able to manage on less drugs I would perhaps still be well now. Who can say? I may have had a major flare instead and suffered that way.

[Sangye]

SO happy to hear you're doing better, Jack. Makes my day.

I must be on the other end of the seesaw...going downhill all day. You know, the day after the rtx and yesterday I wasn't feeling all that bad. Very shaky but I could still function around the house a bit. I thought, "Maybe I've just toughened up since last time." But today I'm totally flattened and worsening by the hour. This is what is was like. Even though I know I'm tougher.

[Jack]

It can be hard work having to be tough! I'm amazed that we all keep getting through this crap even after being hit time and again. You have suffered more than most Sangye, just keep in mind that you have been through this before and can do it again. All things must pass.

[Sangye]

Thanks Jack. When I did rtx the last 2 times I didn't keep daily notes like I do now, but I did make general notes about the treatment. I'm hanging onto the words I wrote: "Can really tell rtx started to work after 6 wks. Increased energy, decreased pain." Just 39 more days....

[marta]

Jack, glad to hear you're feeling better. I was concerned when I read your earlier post. I tell my friends that this Wegener's thing is so inpredictable and I laughed when my old doc would ask me "How do you feel right now". I thought that was the craziest question, and showed me that he didn't really get this disease. What I feel now can be completely different from what I felt an hour ago or what I'll feel an hour from now. It's kinda like the bunny hop - two steps forward, one step back.. hopefully you have more forward than back.

Sangye, bummer. I'm sorry this hits you like this. At the very least you've been here before and know that it will pass and make things better in the long run. I know this doesn't make it any better, but it's a thought that can pull you through the grossness. I don't know, I might be singing a different tune when I'm in the thick of it.

As for being tough. I feel like such a whimp since this thing. I was having a 'miss the old days' moment the other day. I miss normal. I miss being tough and going out for a 25km run. I miss getting on my bike and spending the afternoon flying through the woods on it. I miss skiing thousands of vertical feet in a day. I miss being able to go to work, come home make supper, clean up, play with Hana, and staying up and hanging out with Brian and still having plenty of energy to spare. I miss being the old strong/tough Marta.

[drz]

I learned quite early that Wegener's disease is like a roller coaster ride, up and down, and nothing stayed the same for long. Lately the ride has been getting tamer and I start having fantasies, or dreams that it might actually level off and stay the same for awhile or better yet improve. I remember the words of my colleague with Wegener's, in his experience he said the " first year or two are the hardest" but then things get better." I was diagnosed nine months ago and this is about the best things have been for me since diagnosis. At thanksgiving time I was feeling pretty good and getting optimistic about Wegener's disease finally getting under control and thinking I could stay out the hospital for awhile. I went in my routine blood work, fainted two times, and ended up in hospital for three days due to dehydration caused by bladder infection from Cytoxan. Then I realize silly me for thinking things are continue going along fairly well. Overall things are better since diagnosis and my rheumatologist is very pleased with my miraculous recovery so far, but I realize things can change very quickly and the bottom fall out with another new crisis. I try to just take it day by day and focus on what is going well today or how lucky I am do be able to do what I can do now since it was much worse a few months ago. If I think about what I have lost in functioning and health, I get too depressed and down to do anything. Then for me a nap is best way to deal with these feelings. I empathize with the pain and distress from feeling down that others have reported in above posts. I feel sad that others too have to have such feelings. Hope things get better for all of us. time for group hug!

[Sangye]

Marta, I'm so sorry to hear you're struggling with the grief aspect. I think you're finally getting good care though, and things will improve quickly for you. I wanna see you flying through the woods, too. I've actually had a few dreams lately about swimming, running and hiking. Been a long time since I even dreamed about it.