oh and i forgot to add with my update-that I currently only have 2 doc appts a year now for DM and at my next appt we will cut my MTX dose in half. if that goes well after 6months, cut in half again, etc until i'm off! I also got bloodwork done to check my CPK before canada, I felt that it was going up and wanted to be careful...after my hike i got my results and CPK was almost the exact same as it was when i was still on Prednisone :) !!! it was 116 i think

Sitting for long periods of time is difficult for me, so I must get up often, even if only to stand and stretch. Also, I work from home and have my "office" arranged so that I can work sitting or standing--just have to move my computer between high and low desks. Here are some articles about prolonged sitting that you might want to share with the Leave Specialist. BTW, is this specialist also an ergonomics specialist, as maybe your work area could be configured so as to help you take quick breaks without being away from your work space (at least not too long).
http://www.nytimes.com/2011/04/17/magazine/mag-17sitting-t.html?_r=0
http://www.mayoclinic.com/health/sitting/AN02082
http://shine.yahoo.com/healthy-living/6-surprising-health-risks-sitting-desk-232800185.html

Nanny - what happens when you sit for a long time? I get stiff and my muscles I sit on hurt...

Joyforall - so sorry your going through this - having to stress about disablity possibilities adds so much stress- I feel your pain!

I work full time in a very stressful job too. It is mostly computer work but lots and lots of conference calls. Luckily I've been there 18 years so I qualify for benefits when necessary.

I now work from home full time which is probably the only reason I can still work. When I was working in the office, I was like you and it was all I could do. It took all my energy. I tried to eat healthy, drink lots of water, manage the stress as best as I could, and when I got home, I went to bed. Figure out easy dinners that don't take even more energy. Don't worry about laundry or cleaning house or taking care of anything like that until the weekend but know you might not feel like it then either. I hired someone to come clean for me 2 times a month. Saved me a ton.

As far as a Leave Specialist, they will probably advise you to keep your chatter to a minimum about your health since you are covered under ADA and HIPPA. They don't need or want to know because it puts them at a disadvantage. Of course, you should explain to your boss and people around you but you don't need full disclosure. In fact, things have changed so much, I had to get a doctor's note for some work I was missing due to my pneumonia. The doctor can't even list your diagnosis anymore. They just say you are under medical care.

I think you need to think about what you want. Is it part time work? Flexible schedule? Or do you think you bit off too much and need to quit? Knowing what you want will help them help you. I started by working from home 2 days a week. That was so helpful to me and helped me chart the full time arrangement. They were willing to let me work less hours (of course for less pay) or flex my time so if I needed to come in late, leave early, or something of that sort for a doctor's appointment, I could.

I agree with Nanny to adjust your working position. Our desks at work have adjustable height so you could literally work standing if you wanted. I personally find I am most comfortable sitting but I like my feet up so I put a trash can upside down under my desk so I could put my feet up.

I think the key to working full time on limited energy is to decide if that is what you want to spend your energy on and then work everything else around that. If that isn't where you want to spend your energy, figure out what you want and make it happen. You might find you need the medications to support your working if that is what you are going to do.

Thanks everyone! I appreciate the articles on sitting, I hear about that often and it's definitely a big problem to sit for so long. Thanks for your support bny! and lexis, your reply was so helpful-thank you!! I'm looking forward to seeing what my doctor will say about all this since he knows my situation well, and interested to see what my meeting with the leave specialist tomorrow will entail. as far as I know, this job doesn't seem to be too flexible--it's not something I can do at home and they seem pretty set in their ways. It's hard to "do what I want" because this job is SO good as far as financial for us and insurance for me. it seems too good to be true and it's not something I want to pass up. We are testing a possibility for us to have 4day weeks and 3 days off, so that would be helpful to me-although it would mean 2 more hours on the days I do work. Thankfully, I have a very thoughtful, servant-hearted husband who does laundry, dishes, cleans the house without any complaints or hesitations.
thanks again so much for the help!! i'll keep you posted!

@bny806
Prolonged sitting makes it difficult to get up, and I must stand for a few moments before taking a step. It can make my muscles hurt and/or burn, and, at times, feels like the muscles are being "smooshed" or wasting away. Sometimes the legs/feet fall asleep.

@joyforalifetime
Another thought for survival--On days that I feel well, I makes tons of food and wrap in individual serving sizes that get frozen. That way I can thaw out what I want to eat and quickly heat it up and eat. So one day of cooking/grilling can provide quick, easy meals for a couple weeks.

i love that idea! i wanted to gather some easy crock pot recipes so it can be on during the day and i don't have to do anything when i get home except eat it :) i also wanted to start making casseroles on weekends after i've had time to rest so i can have easy meals during the week. it's a lot to think about and sort through!
i personally don't have too much trouble with sitting for long periods of time, i just get a little achey and stiff...but i definitely want to take care of myself the best i can. i try to stand every once in a while to take a few phone calls but i don't think it helps much because it's not for very long. i'm hoping they will allow me to have more breaks (we get two 15min breaks and 1hr for lunch). looking forward to my meeting today!! :)

I was thinking after reading your post that you do have an ideal job for DM. Finding a good paying job where you can sit down makes a big difference. The hard part about what you describe is dealing with the hateful people (HA! Customer service in the modern world.) and feeling bad with the DM. You also have the added stresses of data work that may make you feel like you are pulled in several directions.

I was thinking that you might do well to discuss these issues with a counselor of some kind. The counselor may be able to give you some coping strategies for spacing out your work load. You will also need strategies for when you feel sick and stressed. (The worst people always seem to show up when your not feeling well.) You want to keep a good job. Please do not see it as a weakness to get some tips on coping strategies. The modern world is hard. DM is not going away. Some type of guidance may help you.

I was a music educator for sixteen years. I spent most of my career in a large urban school district. At the beginning of my career, I dealt with some people that I thought were hateful. I learned that I needed to change the way I looked at people. I developed many strategies so that I learned to love the unlovable.

I wish you well. Think carefully and prayerfully as you move forward.

thanks trpt1! i am so encouraged by your post! definitely prayerfully and carefully considering. and yes, i'm beginning to REALLY dislike customer service in this world...i hate the phrase, "the customer is always right"-it just gives them a right to be hateful and impatient. ugh!!
my meeting with the leave specialist was disappointing. basically, my only option is to apply for ADA with my doctor. which is great and i'm thankful for it...but if i have to be away from work due to my sickness, it just takes out of my PTO. as if it was a normal sick day! the only thing is job protection if i run out of PTO. i feel like i'm "paying" to have this disease...that is time i could use for vacation. i've been so emotional about it this week, too. i almost lost it in front of him lol!
i mentioned the fact that my doctor might suggest me getting up to walk around more often...(they keep track of your every move here-you're pretty limited to your two 15min breaks and lunch). he suggested "maybe you can break down your 15min breaks into six 5 minute breaks to walk around"-seriously? ugh. frustrated.