How did you decide whether or not to keep on working FT?

[SjoGirl]

After my recent major flare and Medrol pack (which provided welcome relief) I'm now going to be upping meds a bit and hoping that proves helpful. I'm now wondering about disease management in addition to meds, exercise, sleep, etc., in particular whether I need to consider adjusting my work life.

I've been working a PT job and consulting for about two years now. I am also active in community organizations, but have come to realize that I am waaaay over committed and not sure I can or want to keep up this pace. It's a bit difficult because I live in a community with a lot of highly accomplished people, I am still relatively young, and, admittedly, my ego is wrapped up in my work.

That said, I have known for about 8 years that I have some form of inflammatory chronic disease (rheumy recently said when I asked if the flare was SjS or RA that it really doesn't matter, both have same effect) and I believe it's progressing. What I'm trying to decide is what to do about lifestyle.

I want to continue working to some degree, but being behind a computer all day (which I am) is a killer. As well, no one can say how my disease might progress or on what time table. I want to enjoy my life while I can.

If you were not forced to stop working, but felt it might be best what factors did you consider? If you slowed down or stopped working how did you adjust? Were there any books or articles that you read that proved helpful?

Thanks for any insight you can provide.

[irish]

I had been ill for many years (almost 40 years) and did not get diagnosed until after I quit work. The doctors all missed my myasthenia gravis and I quit work in 2003 in June. Diagnosed with bullous pemphigoid (skin) in 2002 and myasthenia in 2006. Now have 2 more autoimmune diseases.

I just kept plugging along and spent most of my time resting when not working. I should have quit sooner but did not realize how ill I really was. I would say to cut back more, find an easier more part time job or quit. There will be a day coming up soon when you sit down and say to yourself that you have had it. Can't do the job and other activities. You will have to choose how to keep yourself healthier and happy. Be sure to have hobbies that keep your brain active. Good luck. irish

[Joe S.]

When I was working full time, I used the Family Medical Leave Act (FMLA) to take time off. While helpful it meant that I had to use my vacation time first. Which left no true vacation. Then there was a department layoff.

The next job was part time. It allowed me to choose how much and how often I worked. It dwindled down to on hour per week. Then I had a very bad day. I took time off to take care of my dying mother and decided that I could not go back to work.

Because of this I did not have enough hours of work for social security disability. It took me too long to make the transition and Sjogrens was not considered a disabling disease, and I did not get support from my doctors.

There was no way for me to continue to work. My wife is now retired and we plan to enjoy what time we have left together. I ride with to watch her bowl and provide candy for her league mates. She drives me to doctor appointments and we still take one long trip to see our daughter in Campbell River, BC each summer.

I limit my computer time. I used to spend my 8 hour work day and 4 hours after work on computers. I still have one volunteer event that helps connect me with others. I have not found a card club for games that I play.

[SjoGirl]

Thanks all. I can't help but be reminded of what I used to hear seniors who moved into a CCRC where I worked say about moving in, "I should have done it sooner." Unfortunately, I tend to be quite a stubborn person and slow to let go of things. I am slowly working on it and see having sent this message to the group as a first step in my 12-step intervention.

Thanks again.

[Carolina]

Dear SjoGirl:

I retired 18 years ago, at age 58.  I didn't really retire early due to Sjogren's, per se.  And I had the great good fortune to have had an extremely varied and productive life, even tho' I always felt I was working against fatigue and general malaise most of my life.   I never had the stamina and energy that other people have.

There is life after retirement, for sure.  I've lived my entire life in a highly in the company of highly accomplished people, I grew up in a university town, was a National Merit Finalist, my husband taught and did research at one of the Medical Centers in Boston, and I know how high the bar can be set, and how determined we can be to 'shine' in that world.

I was 'shining' when I retired, but I had no choice, SjoGirl.  I couldn't keep up that pace, and the sudden diagnosis of a life threatening heart condition (my artery, called the widow maker, was 95% blocked when opened and stented) is a very strong motivator.  I had young grandchildren in France, and I wanted to really get to know them and to offer them long stretches of time (6 weeks every summer for 9 years!) with us in America.  And I wanted to exercise and stop all the stress.  I didn't know what lay ahead, health wise, but I knew I wanted a calmer present.

I still want that, and now I am forced to be almost totally inactive, since I can no longer drive and walk with braces and a walker.    I'm glad I did all the things I could, but I don't miss them now, and didn't miss them when I retired.

I had learned to say 'no' early on, because I didn't have the stamina to say yes to everything.  But it was fun in retirement to be President of the Friends of the Library, for example.  And join book clubs and other clubs.   My image of my early retirement is mostly one of sunshine and joy.

In the final analysis, the best thing my husband and I did, after I completed my MBA at 42, and joined the truly grown up work world, was contribute the maximum to our retirement plans.  That has allowed us (both college educators, with moderate incomes) to have a reasonable retirement.

Relative financial security is often the ultimate deciding factor for retirement.

There is no decision in life that is perfectly easy.  Something is lost no matter what.

Regards, Elaine

[Kristina09]

Hello, I?m new to this and this is my first post. I just recently switched my work schedule from FT to per diem, I?m 37 with 2 school aged children. I switched because of my frequent call outs, frequent illnesses, sometimes missing weeks of work at a time. Other than my Sj?gren?s and RA, my rheumatologist thinks I may have lupus, and my acl in my knee is destroyed so I have been working with a brace and limping around, trying to hide all of my pain. I felt like changing my schedule is the only thing I can control. It?s probably not the best financial decision but I feel better working when I can and not when I?m sick, I don?t feel so guilty for calling out and I feel somewhat in control of an other wise uncontrollable situation. I hope you find the solution that works for you 

[SjoGirl]

Thanks all. As I have said to some privately, admitting that I have a problem is the first of what is probably a 12-step process to disengage. I am working with my husband to plan so that I can step back, hopefully at the latest in a couple of years. Much will depend on availability of healthcare (which I don't have on my own since I work two PT jobs).

Thank you for entrusting me with your stories and for sharing your advice, you are greatly appreciated.

[Kristian]

Kristiana09- 

You may want to talk to a disability attorney because gradually slowing down before declaring disability if you keep getting worse can screw up your earnings history and make you earn less for life should you ever need medical disability or SSDI.

It might cost you a $100-200, but most attorneys will consult with you for free.

Just mentioning because if you don't plan it can massively blow up.  I would say everyone on this board probably thought they would get better if they just slowed down and gave it some time, but the disease ravages on with time and most of us continue getting worse or at best stay stable.

Hope this helps you.

Krisitan

[warmwaters]

I was one of those who had a relatively quick onset of serious symptoms, and had to go to disability. One of the hardest things about that is something you've mentioned - that a lot of my view of myself was about my work and engagement with meaningful things.  To say it simplistically, I mentally saw myself as " a smart person with certain snazzy job who worked with interesting people". Now, I didn't know that's what I thought then, but in hindsight....

One of the big adjustments was redefining myself. It's easy to define ourselves by what we do. I ended up doing about 6 months of therapy to help me find what I cared about, what made me feel worthwhile, now that I could no longer work.  I discovered that helping others in a one-on-one setting mattered to me, so over the years I've done various things that let me do that. For a while it was volunteering at the library to help people with tech. These days I can't show up on a regular basis so I mentor a college student. I've found activities I can do on my own that keep me amused. I stay in touch with friends.

It'll be a big transition. Pick at least one thing, and stop doing it, and see how it goes. Best of luck.