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. :smile1:

[renidrag]

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

[Sangye]

Thanks, Dale. :smile1:

[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.

[pberggren1]

Since when did you become limited Sam?

[Pmarsh]

Yeah. Kite surfing if surfing on water with a big kite - big enough to lift you 50+ft into the air. I plan on kite skiing next winter too.

[elephant]

Sounds like fun, it lifts your spirits up!

[marta]

Your mom sounds like a super cool lady Pmarsh.
Brian and I just went for a bike ride and I was thinking about you while we were riding through the forest. Maybe we can meet up during the Grand Fondo (Brian might go in that one, he's signed up for the one in Penticton in July). We can scheme for a Canadian WG fund/awareness raiser.
Kite skiing hey? That sounds like just a little bit of fun.

[RudiK]

Hello Peter, I'm glad you are doing better. I was diagnosed with WG in late March/early April and my doctors tell me that it is retreating. I'm still on Pred (10mg), Cyclophosphamide (100mg), Salfameth (3 times/week) and Norvasc (5mg). The most important thing, besides being treaded by good doctors, is to keep a good attitude and keep on with the normal daily routine as much as possible. I was luckier than most people on this forum in that WG "only" attacked my kidneys and caused total numbness in my feet. So, I can't do my daily 4 mile fast walk anymore, and can't ride my bike anymore, but I still maintain my 5 acre land and 600 ft irrigation ditch. It's now going slower than before my feet went numb, but I still do it and that is the important thing. If one gets a bad attitude and feels sorry for one self, WG will kill us very fast.

Take care and all the best to you. Rudi K.

[Sangye]

Rudi, could you ride a stationary bike with foot straps? I know it's nothing like a real bike, just thought maybe you could enjoy some exercise and maintain some of your biking muscles. :smile1:

[RudiK]

Hello Sangye, you're right, I had not thought of that option. Thanks, I will try it. In fact, my wife used to have one of them, we might still have it stashed away some where.
Thanks again. Rudi k.

[BrianR]

I used to think stationary bikes and treadmillls were last resorts at best. Now I use them regularly. (For those of you who do not know me I do not have WG, my wife does so my talk is cheap but well intentioned). Yes it is not like the "real thing" but it works and it can be very enjoyable if you get in the right head space. You can go at your own pace, create your own environment, (I like watching a movie unless I am training hard in which case I use music) and start and quit when you want. Weather is not a factor. The key is to not make a production of it. Get it set up, get on it whenever you want to - even on a whim - and step off at anytime, even if just after 10 minutes. Everything you do physically has an accumulative effect. Even at the office, simple things like standing every time you are on a the phone contribute to better fitness; really!

I know that even moving (or even focusing) can be hard at times, let alone walking or biking or running so one can only do what one can do.

For what it's worth.

[pberggren1]

I used to think stationary bikes and treadmillls were last resorts at best. Now I use them regularly. (For those of you who do not know me I do not have WG, my wife does so my talk is cheap but well intentioned). Yes it is not like the "real thing" but it works and it can be very enjoyable if you get in the right head space. You can go at your own pace, create your own environment, (I like watching a movie unless I am training hard in which case I use music) and start and quit when you want. Weather is not a factor. The key is to not make a production of it. Get it set up, get on it whenever you want to - even on a whim - and step off at anytime, even if just after 10 minutes. Everything you do physically has an accumulative effect. Even at the office, simple things like standing every time you are on a the phone contribute to better fitness; really!

I know that even moving (or even focusing) can be hard at times, let alone walking or biking or running so one can only do what one can do.

For what it's worth.

Sorry Brian. Your talk is not cheap. We charge 100 dollars a word for non Weggies on here so your bill is now over 380 grand. Pay up buddy. LOL

[norcalian]

Brian - I started using our treadmill just the way you explained about a week ago. I felt so week in the legs, but decided to give it a try. I only walked for 15 minutes, but it was like I could feel my legs again. I do it every day for 15-20 minutes. I use a heart rate monitor to make sure that I don't push it too hard. I take it slow on an incline and adjust as needed. Anyway, i just wanted to echo your though about doing something - and indoor exercise equipment can be really convenient.

[Sangye]

Sorry Brian. Your talk is not cheap. We charge 100 dollars a word for non Weggies on here so your bill is now over 380 grand. Pay up buddy. LOL
ROTFL Just make the check out to the VF. :flapper:

[pberggren1]

ROTFL Just make the check out to the VF. :flapper:

But we get a commission as well.

[Runcolerun]

I know this may be ambitious, and I've only known about my WG for about two months, but I fully plan on completing an IronMan triathlon. I was looking for a cause to start raising money for before I went in to the hospital for WG, and now I have one.

The way I look at it, the disease can define me, or I can define this disease. I've always been a little stubborn...so I plan on giving this thing my all. And it would be a good opportunity to raise awareness for WG as well.

[pberggren1]

I know this may be ambitious, and I've only known about my WG for about two months, but I fully plan on completing an IronMan triathlon. I was looking for a cause to start raising money for before I went in to the hospital for WG, and now I have one.

The way I look at it, the disease can define me, or I can define this disease. I've always been a little stubborn...so I plan on giving this thing my all. And it would be a good opportunity to raise awareness for WG as well.

I would give serious thought to doing such an extreme sport like that Cole. I would thoroughly discuss this with your doctors. I know for a fact that if I told my doc I was doing a marathon or something like that he would admit me to the psych ward.

[Sangye]

I think it's good to have a goal like that, Cole. Wegs likes to throw curveballs but it doesn't always do that. You might do just fine attaining your goal.

[drz]

Discuss it with your doctors and see what they say. How much prednisone are you taking? That could be a big factor in whether it is safe for you to do it?



I know this may be ambitious, and I've only known about my WG for about two months, but I fully plan on completing an IronMan triathlon. I was looking for a cause to start raising money for before I went in to the hospital for WG, and now I have one.

The way I look at it, the disease can define me, or I can define this disease. I've always been a little stubborn...so I plan on giving this thing my all. And it would be a good opportunity to raise awareness for WG as well.

[Runcolerun]

I fully plan on talking to my Doc, just trying to find a new Rhmey already...the one that was reccomended by the ER doc has found a problem with calling me back.

My Pulminologist is great, however. I was registered for the MS150 before my hospitilization, (end of the month) and my Pulmy told me that if I could do it, to do it...

Im on 20mg prednisone right now, but I am taking it super easy with my running and biking because I know that the Preds can really be hard on ligaments, bones and tendons. My taper has gone really well, and I've lost 40mg since being released from ICU.

[pberggren1]

I fully plan on talking to my Doc, just trying to find a new Rhmey already...the one that was reccomended by the ER doc has found a problem with calling me back.

My Pulminologist is great, however. I was registered for the MS150 before my hospitilization, (end of the month) and my Pulmy told me that if I could do it, to do it...

Im on 20mg prednisone right now, but I am taking it super easy with my running and biking because I know that the Preds can really be hard on ligaments, bones and tendons. My taper has gone really well, and I've lost 40mg since being released from ICU.

This is very good news Cole. It sure sounds like you will be able to do it. Just listen to your body.