One step closer to normal

[marta]

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.
Jasper-20101217-00231.jpgJasper-20101217-00227.jpg
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]

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]

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]

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 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]

Marta glad you were able to go out and have some fun. Sounds like you are on your way to recovery! Yahoo!

[Jack]

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.
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.

[drz]

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]

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]

[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]

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 ). The fact of the matter is that hurting myself badly has scared me!