Conferencing is good when so many docs are involved like that. I too crash from time to time, but I think it is more of a case of me overdoing it the day before.
Conferencing is good when so many docs are involved like that. I too crash from time to time, but I think it is more of a case of me overdoing it the day before.
I just have to vent once in a while, then get over it.
My docs are spread all over. Two are 100 miles from me and 100 miles from each other. One (SLC) is about 400 miles. Two docs are only about 2 miles from me (that's nice). That's the hazard of living in a small town. On the upside, we don't have traffic jams, crime, etc.
I love small towns and cities. Where I live we have about 16,000 people and can drive from one end to the other in about 10 minutes or less.
LOL Vent away!!
That does complicate things even more to have docs all over the place. I had a similar situation in Arizona, with several docs in my town, several at Mayo 200 miles away, and another in Phoenix 200 miles away. Thankfully they all were pretty good about staying in touch with each other. Hang in there, vdub!
This all has a very familiar ring to it. I know that some other WG patients would say that crashing does not happen to them. When I was young and developed severe problems with WG and at last I had remission I was almost one hundred percent for a long time. I would have said "Crashing, what crashing?" So, it makes me thing that the docs also have a tough time , since some patients experience this and some don't .
It falls upon us yet again to learn to distinguish for ourselves, as best we can, what is going on.
And then throw up your hands and go with the flow and let whatever , do whatever, whenever, tomorrows another day, most things usually go away, blah blah blah.
I have learned to dance to the rythym of the crash. It doesn't bother me as much as it used to because I'm not fighting it (so much) anymore.
At this point I am too new to the diesease to know when a crash is about to happen. I thought maybe last night was going to be bad, but as it turned out, I had one of the best nights I've had in maybe a month. Eventually, I'll probably learn the signals leading up to it and be able to handle things a little better.
I can predict some of my crashes or detect symptoms beforehand. But many still happen with no warning whatsoever. Much of the time it's completely unpredictable. One day I can overdo it and not crash while another day I can overdo it exactly the same and crash.
But you are right--nothing to do about it when it does happen except go with the flow. I don't freak out as much anymore or think "It's going to be like this for the rest of my life." It is what it is.
My experience of predicting and not predicting is exactly like yours Sangye. One thing I can do in this department is when I know I have a day when I MUST not crash I rest up the day before. This Friday I am taking a friend for a doctors appointment 100 miles away. Thursday I will rest and do easy things and try and take a nap if I can. So, I have some control on creating no crash days. BUT, it then becomes likely that the next day or so I will be tired. I plan for that too.
Sangye, aren't you close to trying to reduce prednisone? I made it through my Ritixan ok. The second dose was especially easy. I was only down for one day and then back to 'the new normal'. I don't feel any different yet. I am stable on 40 mg of prednisone - I'm just trying to enjoy that for what it is.
Aren't you on a lot less pred? I know you are very sensitive to it.
"I'll have a couple of Rituxan Miracles for me and my friends bartender"
I suspect most of us will eventually come to that conclusion and learn to live with things. It kind of has to turn in that direction.It is what it is.
Huh? We have metho martinis? rituxan and rum? celcept sunrise? :-)I'll have a couple of Rituxan Miracles for me and my friends bartender
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