reimagining life

[AnneNeville]

I think what surprised her was how immense the relief I've gotten in terms of anxiety from the prednisone/plaquenil . . . it really is amazing.

[irish]

When our body feels better our depression and anxiety tend to decrease some. Pain and other body ailments that are relieved by the Plaquenil and prednisone can cause us more stress in our body and our lives then we are aware of sometimes. Good luck. Irish

[warmwaters]

More on reimanging life...

So I had a relatively sudden onset of Sjogren's and a quick diagnosis. I was 50, and had just taken a big high pressure job at a big company, which involved a cross country move. So I was in a new place, in a new job that I really wanted. I'd always been very engaged in my work, and it was always an important part of how I saw myself.  Then boom! Exhaustion, chronic diarrhea, "brain fog". I went out on short term disability, got a diagnosis. I  thought when the doctor told me she said "Shogun", so I thought it was some rare Japanese disease.

After 6 months, I wasn't better, and I was running through all the different "try this".  I'm a problem solver by nature, and I was sure that if I did enough research, tried enough treatments, I'd find the things that would restore me to my former life. Or at least most of my former life.

And after a while, I got very sad and very angry. Why me? Or, poor me!   Or, when I when I was having a good day, I dive into doing something, exhaust myself, and then be miserably tired for three days. I had some doctors that didn't get it.

And I'd lost my identity. I was no longer the person who introduced herself by her work background. But that's what I wanted to do.

I ended up seeing a good psychologist, and he helped me figure out what things made me feel like my life had meaning.  Some of the things that gave my life meaning were relationships. Many of my relationships in the past had been work relationships. Another was that I liked helping people.  I mentioned I like solving problems, but I like solving real problems that will have an impact on others, rather than things like math or abstract problems.  And that was useful.

I ended up find some volunteer work at the library once a week, helping people with their computer questions. I got out of the house (good thing), and did something for someone else, which helps me feel good. I started working on finding non-work relationships, by doing things like joining a book club. From time to time, what I need for meaning (or what I'm capable of) changes, but when I find myself getting sad or angry, I reassess, and make sure that I've got something in my life that's important to me.

There are many paths through this. Taking care of yourself is important, and it includes your inner self, as well as your body.

Best... warmwaters (another thing that makes me happy)

[AnneNeville]

warmwaters, thank you for your story. I can't imagine how frustrating it must have been to have this diagnosis right after a major promotion and a big move! I can identify with a lot of what you are describing, since my own career came to a crashing halt four or five years ago . . . I just didn't know what was wrong. It's been a few years of refocusing and personal growth, and in many ways I have been better off with a more rounded lifestyle.

But it is scary to be financially dependent on others.

[warmwaters]

I agree that it's hard to be dependent on others.  That was one of my deepest sense of loss. I was always the provider, worked my way from a very modest background to self-sufficiency, saved (boy am I glad I did that), and felt proud that I wasn't living on the edge.

The emotion was "I can take of myself".  And then, that too is gone.  I also just find it hard to be dependent in the little ways - the days I can't load the dishwasher because I'm too tired, or have to ask for help in lifting something.

Aside from the physical burden, this disease offers a lot of "opportunities for growth" (aka tough challenges).

[Nymph]

Hi Anne,

I just turned 38, was diagnosed at 33, and had symptoms for several years before that. I understand the difficulty of trying to plan your life around an illness now that you know it's chronic.

Here's my journey. Maybe it will help you.

When I was diagnosed I had about three years of health decline behind me. I barely crawled through the last year of grad school. It was the Recession so I could not find a good job. I tutored for a while. I moved home with my parents.

For the next five years (!) I worked as a caregiver for elderly people with dementia while I slowly recovered to a level of health and functionality. I did see significant improvements with Plaquenil but also some setbacks along the way. I worked about 30 hours a week and it was a very low-stress job. During that time I also spent 8 months in Israel studying Hebrew (which I hope to teach some day) and got another master's degree. (I cut back on hours at work while I was studying). Eventually I was able to work as a teaching assistant half time. By the time I reached my teaching internship, I was able to do it without a significant increase in disease activity. Now I have a teaching position (full time, high school, social studies). It has been a hard year in terms of my career but no major health setbacks. I am stable enough to do this job. Absolutely no life outside of work, however.

How long will this last? I do not know. I know that I need to keep a close watch and perhaps stop if I am seeing significant negative effects on my health. At that point I may go into writing depending on my financial and health insurance state. (Who knows these days?) I hope to be able to make it another 13 years to 51, putting every last possible penny in my 401k, and only taking jobs that offer long-term disability.

If you can, do something that gives you a sense of purpose at a sustainable pace. Having a partner who gets benefits will give you some extra wiggle room. If I were in that situation, I would teach part-time and perhaps get an earlier start on my writing goals. Give yourself some time. You will figure out what works for you.