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marta
12-18-2010, 06:41 PM
Went skiing today for the first time since diagnosis. I had a little weepy moment as I was buckling up my ski boots - just because of the foreign feeling of normality that it brought to the forefront. I did one run (2,000 vertical feet) and felt great. I can still turn'em. Run out of breath faster, and the legs aren't what they use to be because I've done almost nothing with them for a while, but I could still turn'em. Here's a picture of me at the top - I would have taken a newspaper to prove that it was taken today, but instead chose to use my absoulutely ridiculous cheeks as proof. I know I will look back on this picture one day and say "Holy $#!^, was I a giant monster face that winter" I soooo look forward to that day.
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These pics were taken this afternoon on the mountain at -18 degrees C.

On a related but slightly different note, just got my last labs back and guess what??? I think I've been right all along. My LFT's are normalizing with my ALT being back down to normal range and my GGT going down significantly. My ESR is down to 10 and things are looking up - on paper and in my body. Now that I've been on cytox for 3 weeks and feel it's magic elixir effects on my body, I talked my doc (my GP) into trying out dapsone again. I figured our experiement is more controlled now and whatever we discover will be more significant than our last go around of a week on a week off cytox, now add the dapsone, now remove it, now back on cytox - it was nutty. So we started dapsone a week ago and no negative side effects in my bloodwork so far - touch wood. What was I right about? About the drugs not being the culprit when it comes to my liver enzymes, but my liver being affected by WG when it's active. I know, 'exceedingly rare' as Sangye pointed out, but I've never been a conformist, even in the land of Wegener's apparently.

So one step closer to normal, or remission, or whatever we want to call that final goal post that we're all shooting for. I just know that today I feel good - ginormous, but good.

pberggren1
12-18-2010, 07:21 PM
I am glad you were able to go skiing today Marta. But please take it easy while on pred, especially the higher doses, because it weakens the joints and you could easily rupture or tear a ligament.

Doctor Phil,
Signing Off

marta
12-18-2010, 08:08 PM
Not too worried about joints and ligaments - that happens if you twist yourself up inexplicably, and I'm pretty sure I can avoid that. I might need to worry about bruising and thin skin though (another pred side effect) - skiing on your inside ski can make for good falls on your butt. And not skiing for a while can make you ski on your inside ski without you intending to go there. So butt bruises, here I come. Maybe if I ski fast enough, it'll peel some of the cheeks off my face.

Thanks Dr. Phil.

Sangye
12-19-2010, 12:49 AM
Wow, I'm glad you were able to have some fun, Marta.

However... the risk of injury to tendons and ligaments is not just with twists, etc.... Pred makes them very fragile, so putting extra load on them can cause ruptures. One of our members (Onatreetop) messed up her foot (http://www.wegeners-granulomatosis.com/forum/general-wg-chat/986-what-newly-diagnosed-need-know-2.html) really bad by using a treadmill while on pred. Also, you have to remember that a lot of the strength you feel is not actual strength, but is due to high-dose pred. Exerting yourself on high-dose pred means depleting the adrenals, which means prolonged fatigue and weakness once the pred is reduced. This is the #1 hardest thing to get someone on high-dose pred to hear. Pred makes you think you can lift cars.

elephant
12-19-2010, 12:55 AM
Marta glad you were able to go out and have some fun. Sounds like you are on your way to recovery! Yahoo!

Jack
12-19-2010, 01:17 AM
Glad you were able to enjoy yourself, but I'm sorry to have to join with the others in giving you a ticking off too. :thumbdn:
Skiing has a bit of a reputation for falls and injuries and it just does not go together with the frailties brought on by Pred. You may remember that I broke some bones and pulled ligaments in April and I'm still using a wheelchair a lot of the time. It is not something that is easy to recover from. :sad:

drz
12-19-2010, 04:42 AM
I would love to go cross country skiing and skating but I think my family and doctors would put me back in nursing home if I tried it. I was given a stern warning at my last visit to be extra careful about walking on snow and ice and to avoid falls in general because of the past prednisone usage and resulting fragility of my bones. The Fosomax helps but doesn't make them as strong as they were before the massive steroid treatments.

marta
12-19-2010, 05:03 AM
Awww. I'll take the ticking off only because I know you're all delivering it from a good place, and you care for a fellow Wegster. I will however do everything in my power to do as many of the things that make my soul sparkle as long as I can. I don't feel like I can lift a car, far from it in fact. But with downhill skiing, gravity does the work, and all I have to do is control the speed - that I can do, and in fact I am skiing very controlled and slow compared to normal. I plan on skiing until the day I kick the bucket, even if I have to do it in a sit ski later on in life (the skis designed for handicapped people) - also drz, I will go for cross country ski this year - (skating not so much - the ice is hard, and I can't do it very well.) I will stick to the things I know how to do and I am quite certain that I can stay erect while doing them.

I know that pred does nasty things to your body, but I also know that if I stay stagnant because of that it'll do nasty things to my brain too. I'm not prepared to go there just yet, but I am very glad to know that I have friends from around the world (you) looking out for me, and I thank you for that.

drz
12-19-2010, 05:32 AM
[QUOTE=marta

I know that pred does nasty things to your body, but I also know that if I stay stagnant because of that it'll do nasty things to my brain too. I'm not prepared to go there just yet, but I am very glad to know that I have friends from around the world (you) looking out for me, and I thank you for that.[/QUOTE]

I can understand your motives. My family gets upset with me at times because I choose to attend certain activities where there are lots of people present since they are afraid I might catch an illness or infection due to my low WBC from Cytoxan. I do refrain from certain such outings but if I give up everything, then I feel like I am giving up what life I may left to live. I did decide to give up skiing and skating for now since my balance is so poor that I could fall just walking on flat surfaces and I figure the joy of doing the activity isn't worth the risk to me. I had to go through two classes in my rehab programs on preventing falls and the risk falls present to people learning to walk again. I believe it was 40 % of readmits to hospitals were due to falls and it was leading cause of death for elderly patients.

I admire your spirit and hope you do well and stay erect when you ski.

Jack
12-19-2010, 05:48 AM
When it comes down to it, you have to do what feels right for you. Until all my recent problems I would have loved to ride a motorbike again and probably would have if it were not for my family. However, I'm surprised now about how careful I can be and don't go out in the ice and snow (which we are currently getting! BBC News - Heavy snow and ice bring travel chaos across UK (http://www.bbc.co.uk/news/uk-12025538) ). The fact of the matter is that hurting myself badly has scared me! :scared:

marta
12-19-2010, 05:51 AM
Thanks drz. I promised myself at the start that I wouldn't turn all Howard Hughes because of the immunosurpressants. I am diligent about handwashing and keeping things clean, but I won't wear a mask or avoid being with people (I do avoid Christmas parties now, cuz I can't see myself playing dress-up looking the way I do and then having to do the small talk about Wegener's - but that's a different motivator for being a hermit). I had a Curious George Birthday party for Hana last weekend and was doing face painting - getting right up in the faces of pre-schoolers - now THAT'S dangerous.

I know about falling and old age - my grandpa passed away in my arms after complications from surgery after falling down and breaking his leg. Luckily, my balance never got affected so I'm still pretty ninja on my feet. I am weaker from not doing the level of excersise I did before diagnosis and the muscle and bone density isn't what it was last winter, but baby steps... they are not going to get any stronger by me sitting in my house. I promise to stay erect while doing any sports.

It's funny, I went water-skiing this summer on our summer holidays, and all I could think about was Sangye, telling me that as the boat started up my arms would rip out of my sockets. Luckily it was only a funny day-dream and my arms are still attached.

drz
12-19-2010, 05:54 AM
When it comes down to it, you have to do what feels right for you. Until all my recent problems I would have loved to ride a motorbike again and probably would have if it were not for my family. However, I'm surprised now about how careful I can be and don't go out in the ice and snow (which we are currently getting! BBC News - Heavy snow and ice bring travel chaos across UK (http://www.bbc.co.uk/news/uk-12025538) ). The fact of the matter is that hurting myself badly has scared me! :scared:

Maybe it is part of aging process. Maybe it is our aversion to being bed ridden again for several weeks. I have limited mobility now but it sure beats being confined to a bed again so I will give up some things to try avoid that happening. (even riding motor scooter or cycle though I would like to do that too)

marta
12-19-2010, 05:57 AM
When it comes down to it, you have to do what feels right for you. Until all my recent problems I would have loved to ride a motorbike again and probably would have if it were not for my family. However, I'm surprised now about how careful I can be and don't go out in the ice and snow (which we are currently getting! BBC News - Heavy snow and ice bring travel chaos across UK (http://www.bbc.co.uk/news/uk-12025538) ). The fact of the matter is that hurting myself badly has scared me! :scared:
You can send some of that snow our way Jack. We've been watching the news and it's crazy in Europe. We want some.

I totally get it - what you're saying about being gun shy after a bad injury. You've had to deal with it for a very long time and that totally sucks. You guys aren't used to that slippy stuff either on the other side of the pond. I use to teach Brits skiing at the hill, and for some it was a completely foreign feeling to be sliding and still standing, it was quite cool to watch them get used to the idea and then get on the lift and squeal with delight after a few runs.

Sangye
12-19-2010, 06:02 AM
I also know that if I stay stagnant because of that it'll do nasty things to my brain too.
Marta, the only choices aren't between skiiing and laying in bed....

marta
12-19-2010, 06:14 AM
Marta, the only choices aren't between skiiing and laying in bed....

Oh Sangye, I don't lay in bed... ever. I get about 6 hours at most in bed and those are all toss and turn. I keep pretty busy with life - having a preschooler in the house and all, but I also need something to keep my soul alive. Skiing gets me out there, I get to stop and look at the majesty of nature all around me (and I live in a national park, so it's quite unreal), I get to feel the fresh air in my face and feel the tip of my nose get zapped by the cool air, I get to see smiling faces all around me, I get to feel the wind in my face as I control my immediate environment, I get to feel the strength engage in my body, I get to feel like the person I use to be, I get to ski with my wonderful husband and amazing daughter, I get to go to a place where everyone is on the same page and enjoys the same thing out of life at that moment, I get to feel the closest thing to flying I have ever experienced (and I've jumped out of an airplane a few times - doesn't even come close to the feeling of flying skiing gives you.)

So I know those aren't the only choices, but it's a choice I have available to me, that I totally, absolutely love, and apparently I can still do without too much effort, so I'm going to go out there and be as safe as I can be (the thing I can think of that can damage me is someone else running into me - but I can avoid that by going when the ski hill is emptier of tourists and weekend warriors.) I also know that Wegener's has a way of giving you good days and really shitty days, so I am going to use the good days to their fullest, cuz who knows what tomorrow brings.

drz
12-19-2010, 06:18 AM
Thanks drz.

It's funny, I went water-skiing this summer on our summer holidays, and all I could think about was Sangye, telling me that as the boat started up my arms would rip out of my sockets. Luckily it was only a funny day-dream and my arms are still attached.

I got a big chuckle out of this. Maybe it is the prednisone high but I am still laughing.

Glad to hear you promise to stay upright when skiing so now I can stop worrying and try sleep nights . (smile)

Keep exercising and maybe you can take on some major activity soon like Cindy.

Don't you have plenty of snow. Ontario has some to spare I think.

Sangye
12-19-2010, 06:21 AM
In my own defense, I never said that. :rolleyes1:

marta
12-19-2010, 06:24 AM
In my own defense, I never said that. :rolleyes1:

I know you didn't - it was a funny daydream. Just shows how much I think about you guys when I'm even away from my computer.
I do stuff and think 'What would Sangye say? What would Jack think? How would Andrew react to this one? and on and on...'
Like I said before, I feel like I have one big extended family all over the globe since I got on this forum.

Sangye
12-19-2010, 06:27 AM
Oh! Missed that... :biggrin1:

marta
12-19-2010, 06:28 AM
I got a big chuckle out of this. Maybe it is the prednisone high but I am still laughing.

Glad to hear you promise to stay upright when skiing so now I can stop worrying and try sleep nights . (smile)

Keep exercising and maybe you can take on some major activity soon like Cindy.

Don't you have plenty of snow. Ontario has some to spare I think.

Sleep baby, sleep... That's the one thing I really miss. I will keep exercising, and I have a major activity in mind for next summer, but nothing like what Cindy is up to - and I'll play it by ear.

Never enough snow in a ski town - we'd be happiest if we were having to shovel our doors free every morning.

Jack
12-19-2010, 06:33 AM
Two days of it and we have all had enough here! :mad1:

drz
12-19-2010, 06:34 AM
[QUOTE=marta;

Never enough snow in a ski town - we'd be happiest if we were having to shovel our doors free every morning.[/QUOTE]

I remember when I lived in Reno and they had to close the ski resorts due to too much snow. They had to dig out the chair lift towers before they could open the resorts for skiing. Has that happened in your area?

marta
12-19-2010, 06:36 AM
Not that I know of, but Brian could answer that questions better than me. He's worked at the same ski area since 1978 - I know, he's an old handsome dude.

Jack, blow it our way - ha ha. I know how it is when people and cities aren't prepared for it. What do you mean winter/snow tires?

Jack
12-19-2010, 06:42 AM
What do you mean winter/snow tires?
I'm afraid it is true, they are all but unheard of in the UK. To be fair, we only get this sort of thing for a few days each year so it is no surprise that there is little investment in cold weather precautions.

marta
12-19-2010, 06:44 AM
Totally makes economic sense. Sure makes for a couple of chaotic days though I imagine.

Jack
12-19-2010, 07:30 AM
The press love it! :w00t:

It is the same story every year - we are not prepared, but we have learned lessons and it won't happen again. :rolleyes1:

BrianR
12-19-2010, 09:08 AM
OK - I'll wade into this. Sangye is right, there is much one can get from life; more than just skiing that's for sure! Jack is right, snow sucks unless you can use it. I am going to try and add a photo or two here to show what we do with snow. I hope I paste them in properly. More accurately, here is what my wife does with snow (I am bragging about her). Thanks for the indulgence everyone!799

pberggren1
12-19-2010, 11:21 AM
So Brian, who would be doing the shoveling everyday just to get out the door?:wink1:

Sangye
12-19-2010, 11:43 AM
I love snow. Last year we got 2 huge blizzards in one week here in Maryland. Snow was up to my hips. It made my life much more difficult getting around, but I was happy anyway. I miss the gorgeous snowfall of northern Arizona.

pberggren1
12-19-2010, 04:04 PM
I still love the snow as well, as long as I don't have to do the shoveling.