Polymyositis & Dermatomyositis Support Group

Polymyositis (PM) is a type of chronic inflammation of the muscles (inflammatory myopathy) related to dermatomyositis and inclusion body myositis. The inflammation is predominantly of the endomysium in polymyositis, whereas dermatomyositis is characterized by primarily perimysial inflammation.

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angie1026 09/19/2011

I am really concerned about how having DM is going to affect my choice of jobs. I have been in childcare for the past 5 years. I am currently on a doctor ordered hiatus from this as picking up the kids was just getting too difficult and I was so tired all the time. My family and doc decided I really needed to just focus on me right now. I am only about a month into my treatment so its early days for me. Still, I cant help but worry about how I'm going to help support my family in the future. My husband doesnt want me to go back into childcare. He thinks it is too strenuous physically. I enjoy doing it and also enjoy being able to be there for my kids before and after school and if they are sick, etc... Also, kids are human petri dishes and I know I need to be careful about my exposure to illnessess in the future. I dont really see myself working full time (at least not for a while) but am thinking about looking into part time receptio work or something like that. Again, not right now, but in the future. I was just curious about what other people who suffer from DM do for work. Thanks! :)

lexisgirl 09/19/2011

I have PM and have had it for several years. I work for a large mutual fund company doing marketing communications. I have a client in Arizona and one in California. It is mostly computer and phone work but it is VERY stressful. The job is demanding and I work long hours. I am also required to travel regularly but they are doing their best to work with me on that part.

I would think picking up kids would be difficult. Could you bring in help and they could do the picking up and real physical stuff? Another idea is to take older children that don't need picked up physically. It is so difficult to find good childcare. Since you love it, I hate to see you give it up.

deleted_user 09/19/2011

I used to work in a clinic...on my feet pretty much daily. I did that for three years after diagnosis. I'd still be doing it if I hadn't moved. I love it. It keeps me busy and active and controls the stiffness. I have an administrative desk job now. I know, i'm fortunate...but, the sitting all day is not agreeing with my knees!! So, i've been hitting the gym like a freak lately!

I hate to sound Pie in the sky...but, I wouldn't focus so much on what you're NOT going to be able to do. It will depress you and you'll borrow trouble. Keep as active as you can for your mental and physical health and take one day at a time. No one can predict what's to come. It's very early in your process. I thought i'd never lift weights again. I just lifted heavy for the third day in the week yesterday.

It'll come. It's nice though to get input from other folks in their various stages. Just don't let the not so great stories get to you.

Keep a positive attitude.

N

eddiesgal 09/19/2011

Angie, think of it as one door closing and another one opening. I used to work on my feet constantly and found a part time profession as a cruise agent that I love! Totally different venues, but I must say I like this job much better. You'll find something, I know you will. Blessing, Kim

deleted_user 09/19/2011

Angie, I can relate to that feeling of fear about being able to do your work. I had posted something like that a little bit ago and something Lexis said really helped me.... (thanks Lexis). I was thinking I had to change careers completely, I am a massage therapist. I thought I would have to go back to my previous career of social work and maybe research. So Lexis said her boss was really cool and adapted her job for her. That made me think, I am my own boss and I can adapt my job too. So I have changed gears, doing some different, more gentle and energy work than I used to and have been slowly seeing clients again. It's going pretty well so far and I have to have good boundaries but I am determined to make it work. So, that's my thoughts on the subject, think about how you can adapt your job to make it work for you, older children who don't need to be lifted is a great idea.

deleted_user 09/19/2011

I have been off work since July 2010. I'm a kitchen designer, so I sat at a desk for most of the time, however I did have to climb 20 stair up and down over a dozen times a day. That's one of the things that made me decide to leave. I am just going to head back to work in two weeks! It's a modified return, 2 days a week for six hours a day. I think I can do it physically, they are supposed to be putting a scanner/fax machine downstairs so I won't have to be climbing stairs. I still have trouble with my hips. I'm just hoping that mentally I'll be able to do it. My dr just adjusted my prednisone as I was doing 20 mg one day and nothing the next. I had a real tough time on my nothing days! I'm now taking 10mg everyday instead have been for a week now and it seems to be better. It had seemed like my brain was scattered and I couldn't get things out, verbally, or remember things. I'm thinking this dose has me on and even keel now!

nanny1611 09/19/2011

I had a very stressful administrative position that I enjoyed. I stayed working at that job about a year after diagnosis, but the long hours and other job demands weren't helping me recuperate sufficiently. So I left that position and moved closer to family. A week after moving, I broke my leg at the knee and had a 6-month period of time when I wasn't permitted to drive or put any pressure on my leg/knee. It was during that time that I began working from home as a virtual bookkeeper and a home-school tutor. Much less stressful and more flexible when I'm fatigued. I'm sure you will find something that you can enjoy.

trpt1 09/19/2011

Angie, I teach school grades K-4. I have 1376 students. My job is very physical and I was concerned that I would not be able to do my job with DM. I decided to not quit and give myself time to see if the prednisone & MTX would work. Today, I have energy, stamina, and I am tapering down on prednisone. Give your medication a chance to work. Do not make a rash decision and quit. I have found it is very important with DM to be patient with everything and give things time to work. The economy is going to tank so be careful about quitting any job. Put your situation before The Lord with prayer. Think about WWJD? The human petri dish thing is not a big deal. I simply remove sick kids from my classroom. If The Lord wants you doing a certain job then He will keep you healthy. Think and do what is right for you. Good Luck

deleted_user 09/19/2011

I feel I'm somewhat lucky to be retired and able to concentrate on recovering from this weakening illness. I am a former police officer and would not have been able to function at work had I come down with this earlier in life. I may have never been allowed to return to work considering what is expected from a police officer in critical situations.

I've often thought about who is most often stricken and it seems like most PM/DM victims are middle aged, working, have families to support and are least able to afford the doctors, therapy and medications involved. I hope Medicare still exists when you are able to retire because it sure makes the bills affordable for me. My best to everyone in their recovery and return to work.

MareG 09/19/2011

I understand about picking up the children. My friend's baby is a little peanut and right before I was diagnosed she was 6 months old and I was unable to just hold her on my lap due to my weak arms. That was 5 months ago and there is a world of difference in how well I am now doing.
I am a Financial Service Rep. in a bank. I am back at work full time. There are days I can be in and out of my chair 50 times and days I need to make an excuse to get up and walk around. My co-workers are great, and all I have to do is ask for it and I get help when I need it. Thankfully I am rarely needing help anymore.
Good luck, and follow your heart.

brendacaytonwhite 09/19/2011

I was blessed to find a work at home position in my career field before being diagnosed otherwise I would not be able to work at this time as it is too difficult for me to get out and about and I can't drive right now

I am a corporate travel agent. It is considered a call center with scheduled breaks and lunch hours every two hours, which is great for my needed meal times, but it is very stressful at times, like during Hurricane Irene, but I have worked under more stressful situations. I would love to get away from the stress as well as out of the travel industry. It has changed so much and so many of the clients are just nasty and rude. I am putting together plans to work for my self as well as to return to school. The return to school is not so that I can get a better job. It is for self satisfaction in completing a degree that I have started and stopped too many times.

deleted_user 09/19/2011

I am a pharmaceutical sale manager on the road. I am in and out of dr's offices all day long carrying in my computer samples lunches, etc some days are harder then others but I just keep going.

deleted_user 09/19/2011

Well, I am a school nurse and I am in the petri dish every day with 3 & 4 year olds with disabilities. And I am on the usual prednisone and other agent (in my case it is cellcept) Astoundingly enough, I have not gotten sick and school has been in session over a month. I only got sick a couple of days last school year when I was much sicker than I am now. I do wear gloves a lot and wash my hands like I had OCD.

The loss of strengh can be an issue. The staff in the main classroom that I serve all know that I cannot pick up the kids ( I'm afraid I might drop someone) and they are very gracious to assist when needed.

I hope you can work out a solution to the job dilema, but I have been successfull in working in similar conditions to yours. Blessings on your decisions - Kathy

deleted_user 09/20/2011

I agree with the prior posts - I pray about big decisions and you have time to see how you feel. It will come to you. I like the thought of adapting the current job - maybe have a conversation with coworkers to offer help, etc.
Love Hugs and Prayers :-)

angie1026 09/20/2011

Thanks for your replies everyone. Unfortunately, I am the only daycare provider in my business. I do it out of my home. So I cant pass off lifting the kids to anyone else. They are 2, 1,& 5 months so ALL of them need lifting. Getting sneezed on, spit up on, etc...are almost everyday occurences. As I said, I am taking a break right now to just focus on me. I think everyone is right who has suggested I just need to pray about it and the answer will come to me. Maybe this is a way of telling me I need to explore other opportuities out there which I had thought about even before the DM. Thanks everyone! :)

deleted_user 09/20/2011

I own my own business that manages non profit organizations. I do a lot of fundraising, event planning, financial work, and travel lots.
I almost gave the business up in January before they diagnosed me, but my husband said I should wait until we figured out what was wrong. I'm glad he did. Now that I'm on medication I've been able to return to work full time. When the hours get long, and the days become stressful I try to squeeze a nap in. That rejuvenates me and I can handle the rest of the day. My muscles have started to do a turn around now that I'm at the gym at least 4 times a week. The skin rash is still really bad, and still itches. I've tried all the suggestions and haven't found anything that works. I'm going to talk to my doctor at my next appointment to see if there is anything else we can try.

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