Reasonable expectations

[janewhite1]

I'm still not sure to what extent this is something I should just live with, versus aggressively treat. The lessons I learned from having fibro were all about using as little medicine as possible, exercising constantly, and ignoring pain as much as possible, which don't really apply here.

Last winter I skied 23,000 vertical feet in a single day, most of it on steeps, some of it in trees. I stopped because it was dark. A few years earlier I did almost as much at an elevation I was not acclimated to. I also cross-country skied a 25 kilometer race on several occasions, many of them close to 0 Farenheit.

That's over with, I know that. Sure, I can balance the meRAB to go out for a little while when the weather isn't too hostile, but with that kind of endurance activity, basically all day long, bronchiodilators wear off long before I "should" be finished. I head inside while the old folks and people who barely know what they're doing keep going, and then I spend the next 2 days paying for my fun. Fomoterol lasts at least 8 hours, but it triggers really bad reflux. Salmeterol is completely useless.

The fact is, barring an enormous improvement in lung function, I will never come close to last year's level of performance, no matter how much I exercise or practice, and this is not really something I expected to be faced with at thirty. Honestly, I came to this realization just before Christmas, and I haven't been motivated to hit the gym since. I'm never not motivated to exercise!

I'm not at the highest possible dose of Flovent, but I feel like I don't want to go higher, like I want to keep something in reserve in case things get worse later. I know this is irrational, I really don't think people can develop tolerance to inhaled steroiRAB, but I'm still worried.

I'm going Monday to talk to the doctor about what more I can do, and whether there's any way I can safely participate in my favorite sports. I've been meaning to do this for a while, but I put it off mostly because I know what else is out there, and there ain't much.

Arg, time to stop babbling and wrap this up.

At what point do I just say, "all right, this is as good as it gets," and live with things as they are?

 

[MountainReader]

I was officially diagnosed with my asthma at 31. Because I was coughing so much, I think I had it much longer without realizing what it was because doctors would just say it was due to my sinus problems.

It is really frustrating because you are trying to find a way beyond thetrigger of the activity and the trigger of the cold air. With skiing, you are also adding the challenge of the altitude.

As you can tell, I'm still trying to figure out an answer to your question myself. My asthma is well under control today. Because of my problems and the pattern I've had over the last few years, I'm living with constant concern I'll end up with another one of those 4 month flares or needing emergency care again. In addition to the cold and environmental triggers, I'm dealing with the acid reflux triggering my asthma as well.

I'd love to hear if your doctor has any new suggestions. For the most part, I've been on pretty much the same regimine for a long time. I did add the Xolair shots last July. I'm hoping they are helping. I only got the grant to cover those shots for 1 year though so I'm out of luck in a few more months since insurance refused to cover it even with appeals by my doctor.

 

[janewhite1]

We don't ski at elevation here in the East. My favorite area is about 3,600 feet at the peak. It does however get COLD. I frostbit my nose last winter, that's what happens when it's ten below with a wind that is literally pushing medium sized children uphill in places. Ironically, I apparently have the easiest time skiing the steep terrain, because it requires skill rather than work, and I certainly have the skill. The "easy" terrain often requires walking, which wrecked me.

They got 2 doctors at my place, father and son. If I see senior, he will prescribe stuff, but say, "Your breathing nurabers are in the normal range, you're fine, come back in six months." Not sure what Junior will say, haven't seen him in a while.

At this point, the nurse who's been taking my peak flows before every allergy shot for 6 months frowns and says, "Can you do better?" if I'm less than fifty points above my predicted value. My personal best is a hundred points above predicted, which means that for me, dead average is almost yellow zone and low normal is pretty lousy.

I might ask for Foradil. I'd rather be on a straight steroid daily medicine since the side effects of Syrabicort (reflux, hoarseness) are so nasty, but fomoterol works a lot better for me than albuterol, so possibly Foradil as needed is a reasonable compromise.

Still wondering what's going to happen when I actually get a cold. Still doing my best to avoid finding out!

 

[MountainReader]

I haven't had my peak flow measured at an allergy shot for years. There is a big asthma sticker on the outside of my shot file though.

I actually live at about 4400 feet above sea level. Makes me wonder how much that affects my asthma. I developed the asthma after I moved out her years ago.

I admire your ability to ski like that. I grew up in the flat mid-west and have been scared to try skiing since I moved to the mountians. Sad since there are multiple ski resorts within 1 hour of me.

Isn't it interesting how different doctors, even in the same practice, have different approaches.

I went in today for a B12 shot and to check on a shoulder issue. I just wanted a referral for PT. The doc wanted me to try trigger point shots and muscle relaxers instead. I know if I went in asking for the meRAB, another doc in the practice would have just approved the PT...who knows.

Good thing though...my lungs are currently totally clear right now even though we had "dense ice fog" today. Couldn't see the mountains at all through all the polluted air. It has been so cold here that the ice from storms over a week ago can't melt. It has been low teens for a couple weeks now. It goes up to 20's tomorrow then back down colder. Very unusual here, but it goes with the inversions. Hard on the lungs though.

 

[sue430]

I understand your frustration, I have been there! Did you not have asthma last year? Or did it just get worse? I understand your reluctance to add meRAB, but sometimes it does help. I was bumped to the highest advair dose for several years, & then about a year ago I was finally able to decrease the dose again. When I was first diagnosed, I was a mess. I couldn't do anything that I normally did. My dr kept telling me that I would be able to have a normal life again once we got things under control, & I more or less have gotten my life back. That said though, this is a difficult case because it's hard to treat for triggers like cold air. Is your asthma well controlled except when you try to ski? I do know that I can exercise vigorously, and I can now (thank you allergy shots!) spend time outside, but I can't exercise outside for any period of time. I have given up taking all but the shortest walks except in the winter, and even clirabing steps in an outdoor parking garage will trigger me, even though I can use my stairmaster at a high level for 30-45 minutes & barely get winded. I do hope that you can find a solution though, because it sounRAB like something you really miss. Maybe the doctor will have some ideas for you.

 

[janewhite1]

I did not have asthma last winter, it started during last spring's super-pollen bloom. It's especially difficult because I've always had this fantastically good lung capacity, and outdoor sports, especially endurance sports like skiing or hiking, are such a big part of my life.

The doctor was Senior, as I expected, he looked at my 79% FEV1 and was all, "You're fine," then he prescribed what I asked for, which was Foradil for sports (because albuterol doesn't last long enough) and Doxepin as an antihistamine, because most antihistamines seriously mess with my stomach.

Am I under control now? I don't know. I wake up a little tight, I go outside, I tighten up more walking two blocks to the bus stop, get to work, sit down, an hour later I stop noticing the tightness. Then I go home and repeat. It gets in my way when I exercise unless I'm in the pool, where the humidity is high. (I just don't like the pool. It's not fun.) I try not to use my inhaler unless it's really unbearable, which was I think twice last week and 6 times the week before.

It has been worse, but I had about 3 weeks between the end of ragweed and the beginning of serious cold weather when it was a lot better. I don't know whether to call myself under control or not.