Working it out.07/14/2008 09:07:18
The meeting I had scheduled for work this morning was postponed for a later date. It would have meant some extra money in my pocket, so I should be upset. The truth is I'm a little tired and it's raining, so I am actually happy to go take my suit off and go relax. You really have to be up mentally and physically to do a good job. Being an independent contractor/agent is really great for managing my own schedule. Yes I have my appointments and commitments, however, I am the one to schedule them and therefore usually have adequate time to prepare.
It is somewhat of a dilemma working when you have any type of chronic condition. Most people I know with Lupus have unpredictable health symptoms which sometimes makes it hard to plan ahead. You could wake up one morning feeling bad and the whole schedule changes. Many, including myself are currently on or have been on disability and might be receiving some supplemental income from the state. For me I couldn't adequately do my previous job in advertising. It involved quite a lot of travel and they didn't take well to last minute doctor appointments or client cancellations. I had worked hard and made a good living. It was something I did well and enjoyed doing. It took me a while to gain respect and achieve the level of management that I had attained. It is very difficult to go backwards in terms of status and income.
There are a few "back to work" programs, however you are restricted as to how many hours you can work and how much money you can make before the disability income will be removed. Its a difficult situation, because sometimes you feel well enough to work and there are other times when you can't be at the top of your game. Its very frustrating because everyone can always use more money. You really have to make sure you are able to handle the day to day of a higher paying full time job and all the stress and activity level that usually goes with it. Because if you choose to give up your disability income and then you find out down the road that the job is too taxing, you end up in a tough spot. No income and no job.
So what often happens to me, is I feel like I am holding back at work to a certain extent. I am not willing to give up my health disability, but I would like to try to work more. It is very difficult to become eligible to receive disability income in the first place. Loads of paperwork, doctor appointments, blood work, stress tests, interviews...its a long and aggravating process. There has no doubt been some abuse over the years, so the system that is in place now, practically requires you to be on your death bed before you get approved to receive disability income. It's not something to be taken lightly, because you would have to go through the whole approval process again if it got cut off.
I believe that everyone really does want to work (ask me again if I hit the lotto). I had a very hard time leaving my work some years ago. I think everyone wants to feel productive and have their contributions recognized. We have been socialized to believe that a lot of our self value and our identity are tied to our jobs. When that is taken away its easy to feel a bit lost and confused about self esteem. Not to mention how scary it is to feel like you have to start all over in something that you're not familiar with..
I find that having Lupus has turned me into a masterful multi-tasker. I am better at standing my ground, fighting for what I want and making the most of the good times and good health when I have it. I learned to focus on the things that I am good at and not dwell on what I can't do anymore. So like with everything, including juggling doctors, managing job changes, reinventing myself, I will keep learning and doing whatever I need to do. Maybe its some innate survival instinct, but deep down I truly believe I will somehow always be able to "work it out".
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