you don't look sick

[vdub]

if I lost the weight I put on all would be better

HA! Yes, I have heard that one, too. Absolutely infuriating. And if they aren't saying it, they are probably thinking it.

I am very lucky to have an understanding spouse. I got up this morning at about 7, but just wasn't with the program and was soooo tired. Finally, I just went back to bed instead of fighting it. I slept until 11 and the wife did the yard work that I usually do. I really have a hard time doing that type of stuff anymore -- I think its all the bending over that takes its toll.

[jakekell]

I am sure they are thinking no doubt. That is good your wife is able and willing to do those things. I am lucky my husband may forget once awhile about something I used to do, but once remembers he does it. The bending over isn't good, but the general tired is just always there.

[windchime]

a little vent, please ?
I came back from my wg-doc. he said that he beilieve that I will not get anything from the gov because of the wg. (I sent papers to get disablity) "looks how you look like, they will not give you anything"....
what can I say ? grrr.....
and then he continued with writing that I am still smoldering....

In the States we can hire an attorney to do an appeal for us. Anything like that over there? Or would you be better off finding a better informed doc?

[Deborah T]

I have a boss who always tells me I look great. I even had the misfortune of having a CVA (stroke) while working one day in the office five years ago. When I told my boss I was seeing double and couldn't stand up straight she suggested taking a tylenol, that I looked fine and it was probably just an inner ear problem. Wow! Ignorance comes in all shapes, sizes and IQ's. No one knows how we feel by looking at us. We try hard to blend in and not complain for fear of others running when they see us coming.
I am glad we have this forum to be ourselves, to vent, to be honest about how we really feel. We are not alone.

[jakekell]

That sounds like a boss I had really makes you wonder. I agree 100% that this forum beings some relief to be honest how we feel as I have had almost no one understand except kids/husband whote are all worried to much. One woman at our church told everyone I was in remission as she thought I looked so good! I was half dying from the treatments/infections so it really helps after all these years to feel one isn't alone in this.

Mary

[Deborah T]

I am in my very last semester for my Masters degree in nursing education. I am on sick leave from my job but anticipate being back in 2 weeks. I am exhausted just thinking about everything I will need to be doing...working...school....presenting my Master's thesis or "defend" my Master's thesis.... student teaching this week and next. Any tips on how to perk up for those days when we HAVE to be busy? No drugs please

Blessings -
Deborah T.

[Alysia]

Thank you my friends we are blessed to have each other, and this place. our mutual understanding is so precious and comforting.
Of course I will try to get it. My doc is not the one who decide. There is a committee of docs which is checking.
The problem with my doc is that all the years he thinks that my WG is not serious because I don’t have kidneys involvement. He also did the "limited wg" mistake, thinking that it shouldn’t be treated seriously. For more then 3.5 years he treated me only with bactrim and a bit of pred. each time I came with more deterioration he was surprised. Lately he apologized about reaching the state of saddle nose. (it was his neglect) but still he is available for me whenever I need and fighting for me to get approval of the rtx.
docs are also making mistakes and misunderstanding us, by the "you don't look sick" attitude. and when the doc is wrong, it is worse then when others...

[Alysia]

I am in my very last semester for my Masters degree in nursing education. I am on sick leave from my job but anticipate being back in 2 weeks. I am exhausted just thinking about everything I will need to be doing...working...school....presenting my Master's thesis or "defend" my Master's thesis.... student teaching this week and next. Any tips on how to perk up for those days when we HAVE to be busy? No drugs please

Blessings -
Deborah T.

Hi Deb. wow. it sounds a lot ! what can I say ? I think that you should listen to your body, and not overdo. nothing will go away. things will wait for you.
good luck and take care.

[jakekell]

Deborah T.

Wow is right! I worked the first 5 years I had wegs and don't know how I did it other than forcing myself. That is a big load, maybe take a power nap whenever possible. I used to sleep in my car for lunch and sometimes breaks, had a great boss during some of this time. I am now retired and still tired. I think all you can do is the best you can and I suspect that will be very good, rest every chance you get.

Mary

[MikeG-2012]

I am in my very last semester for my Masters degree in nursing education. I am on sick leave from my job but anticipate being back in 2 weeks. I am exhausted just thinking about everything I will need to be doing...working...school....presenting my Master's thesis or "defend" my Master's thesis.... student teaching this week and next. Any tips on how to perk up for those days when we HAVE to be busy? No drugs please

Blessings -
Deborah T.

OK,here's my .02 worth after not being back to work full time yet, since November 1. I'm back to 7 hours a day 4 days a week and less on Friday if I feel I need to get out of there. Most of the time, I work 7 hours on Friday too. But, there have been Fridays when I know that I'm D.O.N.E. done, and need to go home early, and I do it. I'm working on a slow and steady back to work progress.

One way to ensure that you and your employer/school are on the same page is to have your doc write your back to work letter at 6-7 hours per day, no more than (X) hours a week until you are ready to jump back into a full work week. My doc did this to me without my asking for it (he knows me too well). Right now, I am released at "no more than 8 hours a day, not more than 40 hours a week." Basically, full-time, but no long days. Pace yourself and CRASH whenever your body is telling you to do so. I've over done it more this flare up than when originally diagnosed, and have paid the consequences for pushing myself to hard. Keep in mind. it might take you two or three days to get back up to speed from the one day you over did it at work (ask me how I know). I know that I'm being very pessimistic here, but I learned the hard way, more than once, this time around!

My best advise on how to do this is LISTEN TO YOUR BODY and what it tries to tell you. It knows best.