Sangye's Status

[jola57]

Vitamin C to the rescue, glad you are feeling better

[elephant]

Sangye how are you doing? Is the vertigo gone yet? How much pred are you on?

[Sangye]

I still have the swirliness from the vertigo. It's gotten a bit better as I've decreased the pred, though. I'm down to 5mg pred. I was at 4mg for several days but just not doing okay--extreme weakness every day. My adrenals weren't kicking in at all.

I've also been feeling really down about ever working again with these constant setbacks. This one little inner ear virus that hit July 5 is still wreaking havoc 3 months later! Looking over my daily log of symptoms, I see that just 4 months ago I was able to do way more than I can now. I've never been able to see slow but steady improvement, not once in the 4+ years since diagnosis. The uncertainty about working again is really getting to me. If I knew I couldn't, I would grieve it and accept it. Constantly hoping and getting my hopes dashed is so painful.

It's fall--one of my favorite seasons. People are going for walks, riding bikes, or just sitting in the sun enjoying the weather. I haven't been able to do any of that in over 5 years. I'm having a hard time with that these days. I'm not just losing months at this point, I'm losing years.

Thanks for letting me vent.

[pberggren1]

I still have the swirliness from the vertigo. It's gotten a bit better as I've decreased the pred, though. I'm down to 5mg pred. I was at 4mg for several days but just not doing okay--extreme weakness every day. My adrenals weren't kicking in at all.

I've also been feeling really down about ever working again with these constant setbacks. This one little inner ear virus that hit July 5 is still wreaking havoc 3 months later! Looking over my daily log of symptoms, I see that just 4 months ago I was able to do way more than I can now. I've never been able to see slow but steady improvement, not once in the 4+ years since diagnosis. The uncertainty about working again is really getting to me. If I knew I couldn't, I would grieve it and accept it. Constantly hoping and getting my hopes dashed is so painful.

It's fall--one of my favorite seasons. People are going for walks, riding bikes, or just sitting in the sun enjoying the weather. I haven't been able to do any of that in over 5 years. I'm having a hard time with that these days. I'm not just losing months at this point, I'm losing years.

Thanks for letting me vent.

I know what you mean Sangye. I see many of my friends married with kids and I sometimes wish I did not have Wegs so I could have a family of my own too.

[Jack]

I know how you feel Sangye, any progress is painfully slow and the prospect of things getting significantly better seems remote. However, in your case, I think you should still have plenty of hope that you will get through this and achieve a more acceptable condition. You don't seem to have too much in the way of permanent damage other than perhaps lungs and all the other stuff should be treatable. Yes, I know that you have not had much luck in that direction, especially recently, but I would hope that the edema and vertigo could be cured in time.

Sorry if any of that misreads your condition, but that is the impression I get from this end of your posts.

[elephant]

Sangye you need to vent, and so glad you did. Take your time with the Prednisone. I am taking 6 1/2 mg of prednisone, if things work out I will be taking 6 mg Nov 1. I understand about the work thing, I can't even go back as a Clinical RN. Your so talented Sangye, I hope you will go back to work...if that is not possible, maybe working on line as a consultant or writing a health book. I admire you strength and the way you help people on this forum even when your feeling like crapola! Big, Huge elephant hugs!

[DEE]

Sangye know were you are coming from i keep saying when i go back to work ! can managed to stay awake all day some days but its the thought that i can keeps me going
please take care of you and thank you for helping us DEE x

[Lightwarrior]

Oh Sangye, yearning for what we used to be able to take for granted is difficult. I am glad that you (we) can vent in a safe place. A lot of what Wegners robs us of is our mental well-being. Our ability to live normally and our lack of being able to predict when the next set back will be. Fall is one of my favorite times of year also. I am sending you light and energy and the hope that your path be lighter in the days ahead.

[JanW]

Sangye - we are here for you.

[freakyschizogirl]

Sangye, You're hear for all of us with your valuable advice.

You've saved me enough times in the past few months!

Its the hope that keeps ya going. I love fall too. I dislike extremes of any weather so fall and spring are my faves.

Keep up your spirits Sangye and although you're not working you help each of us every day.