As i have said in previous posts I am newly diagnosed, and have been through some major health issues, I was given a 30% survival rate while they were figuring out what to do with me, My anti body is one of the rarest out there too. I have intersistial lung, dermatomyositis, inflammatory arthiritis, reynauds, dvt, etc. I have been on disability since beening released from my 4 month long hospital stay. I am an elementar school teacher and was basically told I couldn't return to work for fear of germs. Does anyone on here work or am I just feeling like I should because I feel bad about not, even though I know I couldn't handle the fast and crazy life of teaching anymore.

I have been a full time parent and part time massage therapist for the past decade. But I have not been able to do massage since this began 2 years ago. I don't have the strength, stamina nor can I afford the germ exposure. It also takes all of my energy to take care of myself and my kids and I don't think I have any left to hold the emotional space needed for clients as well so I think a new career my have to happen for me. I am glad you were able to qualify for disability. I was not able to so all our financial burden has fallen to my partner (who is an electrician and due to the overall economy has been vastly underemployed these past few years). There have been times where I haven't even been able to be in my kids' schools without wearing a mask due to my immune system being so suppressed... I can't imagine what it would be like to try to work in that high germ environment. You have worked hard for many years and I think disability, though we never want to use it or feel good about it, is exactly for these times. It is the social safety net we all pay into and hope to have in times of need. There is no shame in it. Recovery takes a long time and lots of energy. It's okay to devote that to yourself and your family. My priorities changed really quickly and I had to learn to say no to everything for a long time. Then healing came and I began to be able to rechoose how and what I devote my energy too. I am very selective over what I give my time to and also try to only spend time with people that feed my spirit rather than take away. Life as I knew it was quickly taken away, rebuilding it step by step has been a trial and error process. But what exists now are the things that are most important to me and life feels full and rich. I am hoping my health remains stable enough that I can find some part time work this fall when my youngest starts kindergarten. I don't know what that will be but it will have to be something that doesn't destroy the precious balance I've finally rebuilt. And remember, it's not selfish or lazy to dedicate your energies to self care. You need to do it so you can be here for your family and your life. Kelly

I wholeheartedly agree with Kelly; you have to learn your new limitations and accept the new you and not feel in a rush to try to get things back as they were. I too have ILD, polymyositis, raynauds, & mechanics hands. I was off work for 10 months and then slowly over the course of a year increased my hours back to full time. I work in a clerical post in a hospital. i visit the wards and also work in a close environment with other people. All carry risks with a low immune system, but I love my job and it keeps me sane and from dwelling on my illness, which is how I was becoming when I was off for the 10 months. Working full time is too much though, with running a house and everything else that needs doing, but financially it's what I need to do. I am the sole earner. I get frustrated that i don't have the energy that i used to at the end of the day, and some weeks all i seem to do is work and then collapse in a heap for the rest of the evening, with no energy for cinema or meeting friends, and I do resent the lack of richness and quality of life because all my energy is used for work. Since going back to work full time I have re-homed my dog because I didn't have the time or energy to give him the walks and time that he needed (it was such a hard decision but I still see him and can see that for him it was the right thing to do, even though I shed many many tears). I would love to cut my hours to try to balance a better work/life balance but this won't be possible in the near future. I agree with Kelly, that you need to find a new balance for you, not rush your recovery or you will be back where you started, there is no need to feel guilt or measure yourself against others. Only YOU know how it is for YOU; this illness makes you re-evaluate what and who is important in your life, and who to spend your precious energy on Alison

Alison, Beautifully said! Here's to us all finding our 'new normal!" Kelly

I am also an anti-Jo-1 sufferer. I have the ILD, mechanic's hands, and tons of muscle issues. I was diagnosed 3 1/2 years ago, and have wonderful doctors who work at a University research hospital (Ohio State). My current main concerns are with the muscle issues. I've been on Cellcept for a little over a year, and it has helped greatly with my breathing. I seem to be improving in that respect. But I seem to get weaker by the day with my muscles. I work full-time at Ohio State. I can retire in 2 years at the end of July 2013. The hardest part of my job is that I sit in front of a computer for the marjority of the day, and by mid-afternoon my Restless Leg Syndrome kicks in. I've had that my entire life, and now its gotten worse because I have to sit most of the time. Overall, I agree completely with Kelly and Alison. You just need to figure out what you can and can't do, and live with what you can do. Aging is bad enough, but throw this all into the mix, and it really sucks. God bless you all, and stay as well as you possibly can, especially keeping your spirit moving in the right direction. Terry

I'm a anti-PL7 sufferer I don't yet now anyone that has this antibody. I previously worked as a coronary care nurse and was part of the crash team which required me to run from one end of the hospital to the other. Ironically I was first diagnosed when admitted in heart failure and ILD. I was initially treated with cyclophosphamide and I'm currently controlled with cellcept and prednisolone to name but a few. I also suffer with ITP, Raynauds and i'm currently undergoing investigations as my doctors are pretty sure the illness is affecting my bowel and liver. I had to fight to stay in work as the trust were hellbent on dismissing me on health grounds. However I managed to get a job in the pre surgical assessment unit which requires minimal manual handling. My consultants were only happy for me to do 2 days max, no nights or crazy shift patterns. Although initially cross at these limitations I just manage to do 2 days and have had to ask if I can do these apart in order to recuperate inbetween. It's tough sometimes seeing patients in their 80's or 90's in better shape than me and on less medication. I haven't yet had problems with infections from work I worry more about my 3yr old bringing infections home from pre school. I would'nt want to work in a school. My advice is do what makes you happy and feel well. The problem is the more you do the more people expect. I find it difficult getting people to understand that no two days are the same. I good few days are inevitably followed by bad. If you do find something you can do you will need a lot of support from family and friends and understanding colleagues and employer. I'm registered disabled which gives me rights to reasonable adjustments to my work to enable me to carry on as long as possible. To be fair with a husband, animals a 3,12 and 15yr old at home sometimes I'm glad to go to work. At least I get a decent lunchbreak. Take Care Regard Katrina x