Living with WG (how you want to)

[Pmarsh]

Hello.

I joined this site a couple months ago, but haven't posted very often. I have browsed through many posts and read about all sorts of different stories though. It's interesting to see how people are affected so differently (in terms of the disease itself and the treatment). I find particular interest in how people are managing to keep doing what they love doing despite having health issues. This is really important to me. When I was first diagnosed in late October 2010 I was told I would most likely need 3-4 months off work. This crushed me. Not because it was financially difficult (which it would have been), but because most of my work is in the winter and I love what I do. I didn't want to miss a season. Anyway, I got back to working from home after 5 days of being out of the hospital and ended up working 50-60 hours a week by January.

I've managed to get back to being active over the past few months. It was a slow grind to get some fitness back. Before this I would regularly go for 4-5 hour road bike rides among other things. It was shocking to be floored after 10 minutes on the bike trainer. Now I can ride for 2-3 hours at a time, but try to maintain an easy effort. I'm building up to a 140km race from vancouver to whistler in September.

At the beginning of May I did the switch from IV Cytoxan to Azothiaprine. Unfortunately the Azothiaprine didn't manage things perfectly. I started to get some mild joint pain and chest tightness, so I saw my MD's and he found CRP level elevated and some crap in my lungs. Bummer. back on Cytoxan for a few months. Now I wonder if it was a drug failure or the drug dose just wasn't right. Anyway, through this flare up I haven't felt 100% but I am managing to keep my activity level up - even while on 50mg of pred. There's been some mention to "bucket lists" on here, and for me it's about taking up kite surfing. This is an amazing sport. I've been out a few times now and I'm hooked. I decided that I'm not going to wait until I'm off drugs or until I feel 100% to do things I want to do. It may be a little riskier, but it makes me happy.

Thats my story for now. I'm interested to hear how others are still getting out there and doing what they "planned". My sympathies and thoughts are also with those who are struggling right now. Unfortunately I know I'll be there at times as well. Hopefully we can all have extended periods of "good" health.

Peter

[NicShaf]

Peter,
Glad to hear that you're feeling good. I hope this round of Meds works for you.

I also went back to work shortly after getting out of the hospital, and I've been adding more physical activites slowly over the past 5 months. I'm not to the point I was before Wegs, which was running about 2-3 miles a day, but I know that will come back in time, I'm not going to rush it.
I think I was fortunate to catch Wegs pretty early on, and that has attributied to my getting back to "normal" pretty quickly. I had lung and sinus involvement. I've been on oral Ctx and Preds, and now all my Wegs symptoms are gone...a little runny nose here and there, but that seems standard for everyone. Now tapering and hoping things stay as they are now.
It seems to me that many Weggies get back to their normal lives before Wegs...I love to hear that people are doing well, I find it very uplifting ans inspiring.
Best wishes to you, Peter!

[Sangye]

I'm happy that you're doing so well, Peter! I have no idea what kite surfing is, but if you enjoy it and are willing to accept the risks then go for it.

I sit here reading your post and the longing to be able to ride my bike, etc... is so intense. Losing pretty much all my physical abilities for so many years has caused me to dig deeper than before for what my life means. Right now I look outside to what I always considered (and most people would consider) to be an ugly little dog pee- and weed-filled yard, and I see two wild baby bunnies, squirrels and countless birds feeding. The past few weeks the yard is filled with bird families--parents teaching their babies how to forage and use the bird feeder while continuing to feed them. Watching them all eat and grow stronger brings me joy. It's a different kind of joy than I used to get hiking, biking and using my body. Before I started feeding the wildlife there were no visitors to this yard. I never even heard birds in the neighborhood. Now when I walk to my car the nearby trees are full of songbirds.

Maybe I can be physically active again, and maybe I can't. But I can still save lives.

[renidrag]

And never forget how many lives you have touched through this forum Sangye.
Dale

[Sangye]

Thanks, Dale.

[Jack]

I would encourage everyone to do what they can with their lives and to do it now rather than waiting for the right time. While not pushing so hard that you overdo things and make them worse, you have to be prepared for the fact that this disease can turn around and stop you in your tracks at any time without warning. I'm afraid this has already happened for me and I have lost most of my mobility and don't expect to regain it, but on the whole, I think I used up the good years reasonably well and don't have too many regrets.

[Sangye]

I love that, Jack. I did so much in my 20's and 30's. I lived and traveled all over the world and lived many of my dreams. No regrets and lots of amazing memories.

[Pmarsh]

Jack and Sangye, don't give up hope on getting back some health and mobility, but I'm glad to hear you have no regrets and have found other ways of finding joy.

I have been lucky to be able to use my Mom as a motivator for not quitting and doing what you want regardless of your circumstances. In her 50's she had 6 back or neck surgeries due to degenerative disc disease. Through it all she maintained that she wanted to run a marathon, although she had never been a runner in the past. She would train hard, then have to stop and have a major surgery, then start all over again. She is now 61 and has completed the Honolulu marathon twice. She lives with chronic pain and decreased mobility, but she still spends 2 hours/day at the gym, 3-4 days per week. She's certainly my inspiration for doing what you want to do - sometimes even if your doctor doesn't think it's a great idea (her Dr didn't want her running).

[pberggren1]

Is kite surfing where you surf on water with a big kite attached to you?

[freakyschizogirl]

Although i am a limited Weggie i have been brought very low this last year emotionally.

I try to do things that make me happy - i've been to 4 music concerts in the last year, 4 more than the previous ten years! I love theatre and musicals and although i did more of those last year i've still got more coming up. I got bingo every monday or saturday night now just to get me outta the house.

I just do little activities to keep me busy and prop me up again.