MCTD Support Group

Ya-- I went into managment, and my boss is a good guy. Get a special chair if you need one (I do from DVT) and get rid of ALL fluorescent light if possible, makes headaches worse. Walk around at lunch, keep busy. I work 50 hours a week... but I can get in late, work long most days, and if I feel like crap, I can leave early. (Or if I feel good enough to go skiing!) Prove yourself to your boss, slay some big dragons, they'll keep you around full time and you can keep your health insurance. When you feel bad, have trusted friends at work who understand. My theory is, let some people know about your disability, take good care of them and help them at work, and they will watch your back. And don't take Hope that's helpful.

I was working for a hand surgeon as his assistant...administrative and as his ortho tech. I worked 40-50 hours a week. I actually was moving out of state anyway, so I left that job...sadly.
That was at the end of June, '07. I recently started working again in my new home state. I am working for a GI doc. Much slower paced. We're in clinic only 3 days a week and I have office days the other 2 days. This really allows me flexibility for doc appts and what-not. I was very concerned at first, but my meds for the most part are adjusted and I don't have any pain, so I consider myself fortunate. I really don't know what i'd do if I couldn't work. All that time off made me realize how much I enjoy it and how much it takes my mind off of ME! The other cool thing is, I wear scrubs on clinic days so I can wear my comfy tennies! this really cuts down on discomfort in my feet and legs.
The only thing i'm leary about is getting sick...because of the immunosuppressent. I am constantly washing my hands and I have hand sanitizer EVERYWHERE!

I do have a fair amount of pain, but late in the day, so it's not too bad. I am great in the morning, and that's when I will exercise-- before work. I just wish my hours were shorter and there was less stress. Stress wears anyone down, but I feel like it wears me down faster. I have some mild visual disturbances and eye problems after a hard day, and when I get home I sometimes just lie down with the dog and tears roll down my face... I don't know if it's pain or blepharitis (which I have pretty bad) but I wish I could work 35 hours instead of, like, 55 to 60. I worry it will have long term ill effects, but I need to keep my health insurance.

Hi, i trained as a relexologist, and acupressurist, it just makes my life a little easier working for myself. Fortunately i can also claim disability working allowance, so when i have bad weeks and can't do much work, i still get a certain amount of money to live on. Its enough to pay my rent and keep the car on the road.

Thanks for sharing your stories. This is "git", aka Mary-need to figure out how to change my name. I am the nurse who started the thread on working. I've just recently switched from full-time professor to full-time staff educator in a rehab facility. Most of the problems stem from stress-poor environment, administrator who relies on spies to bring gossip to him, clamps down on those who are trying to just do good work. Scary. Long hours of preparation and having to come in to teach on evening and night shifts are hurting me. I'm beginning to wonder if there is a job for me? I want to ask about the "disability working allowace" mentioned in the previous post-I had disability for a while back in the '90s; now Soc Security is trying to tell me I didn't deserve it (even though it was decided at a hearing)and trying to get their money back. Catalyzt, I like your thoughts on proving yourself to your boss; my immediate boss is terrific, but the crap at work is getting to her, too. Also, corporate is asking her to move up the ladder. IF she goes, I definitely go. One last thought-just got the guilt trip from my mother via phone call-said I was having a bad day, and she responded,"you still have to go to wooork." My family doesn't get any of this, thinks I'm lazy. And my brain is so foggy, I could just cry. OK, enough out of me. Thanks for listening.

Hey, Git/Mary

Good post, glad to know you are hanging in there! It is very hard not to get sucked into silly office politics, but remember: You do not have energy to waste on that. Backstabbing and spying are for people who do not have enough to do, and you've had to learn this faster than most.

I am slowly learning not to worry about the future, either at work or anywhere else. Yes, I still worry too much about stuff all the time, but I know how stupid I will feel if earth is struck by an asteroid, or some idiot politician presses the button, and takes me out of the game long before MCTD does. So it gets a little better every day.

I've always liked Dan Akroyd's line from the 80's movie Trading Places, a classic parody of Wall Street and the workplace in general: "Fear? That's the other guy's problem."