There is something to be said about creating one’s own hours and having the ability to do what one wishes from wherever one chooses to be. A dream to be sure, and yet some folks have it and live it. And I’m not going to lie, there are days when I wish more than anything that I had that all set up for myself.
I don’t. At least not yet. Perhaps not ever, but I may be trying it on account of life with lupus sort of makes adhering to schedules a bit more fun than I can handle at times. The ability to set my own hours and days would be a bit of heaven really rather than having to drag myself to work on the days when it all seems too much.
And working from home, bed, or the hospital if it comes to that, would make things so much more straight forward. No need for awkward explanations or dancing around a subject. Just me doing what I can when I can. Not that this is normal or typical, but there are times when you need to do what you can. And if you choose to work alone, the need to keep steady income as well other things such as insurance become rather important.
And that’s the catch with these things, there’s always, always, a flip side.
My father always told me that you need to know who you want in your corner when the going gets tough. And you need to know who you’d hire when you got into a really tight jam. These, he would say, are as important as learning how to ride a bike, read or do math.
Now my father was never a man to need who to hire in a tight jam, because he never got into one of those. He played by the rules regardless of the circumstances or situations he faced. My father did face tough going and he knew who he wanted and had during those times.
I know who is in my corner when the going gets tough. And I know who falls off because things get too sensitive, too hard or too scary. I also know who doesn’t blink, no matter how awful things look. I even have a person who not only doesn’t blink, but will walk through fire with me if I needed it. I am truly fortunate to have these people in my life. And I’m extra blessed to know where each person fits in my life.
As for who I’d hire in a tight jam, sure I have some names…just in case of course. But I have no intention of getting into one of these at any time. I doubt any one really does.
I don’t recommend that you go out of your way to cultivate these people in your life. But it does help to know who you can count on for different circumstances.
As a lupus patient, I have and continue to have an amazing roller coaster ride of incredible highs and quick, steep drops. There have been twists and turns and slow downs when I wanted things to go faster. And I know this is a ride that will continue for the rest of my life.
When I first for my ticket, aka diagnosis, for this ride there are things I wish people had told me. Things like this is the craziest roller coaster I would ever be on. Things like don’t take this ride without support teams in place aka good medical teams and friends/family as needed.
I wish someone had told me that the ride wasn’t going to bad, there are positives on this ride after all. I wish someone told me that I wasn’t going to be on this ride alone. I also wish people told me that my actions, or lack of them, could impact how the ride works. For example too much sun means a steep drop. Conversely, proper rest a no medication results in a climb to a good place. And with care and caution you can stay in that goodness place, to least for a little while.
I also wish that someone would have told me that it’s okay to be overwhelmed at times, to feel sad or mad about lupus.
There is something special about a uniform. It says you belong to a certain group. It sets you apart. And frankly I’m not a fan of them in general.
Sure for sports teams it makes sense. And yes I want law enforcement and emergency services to stand out. But beyond that? Not really.
However as much as I am not a fan of them, all of my dogs have detested a certain uniform. That uniform just happens to belong to the postal workers. I have no clue what it is about this particular uniform, but every dog I have had the chance to observe goes into barking mode upon sight of this uniform.
I can’t explain it. One of my puppies, upon first seeing a postal worker, across the street no less, started barking her head off. She did not do the same thing for the uniformed police officer. And this trend was something I could see in my other pups as they came into my life.
I feel bad for my mail carrier because the four-footed one loves to bark at him. And bark and bark. She can be in the house and he will be across the street and diagonal to her, and she will bark as if her life depends upon it. So maybe, just maybe we need to reconsider the uniform for these poor people. Something that doesn’t demand a barking storm.
The four-food one is not a fan of homework. She also isn’t a fan of housework, but that’s a whole other story.
Now the four-footed one does not eat homework. She doesn’t shred it or dig a hole to hide it in. Which is a huge relief because the homework I have is marking students papers and assignments. I’m not sure how well it would go over if I told my students that I wanted to grade their work, but the dog ate it all.
What the four-footed does is try to demand my attention every time she notices I’m reading papers. If m trying to submit marks or comments online, she will happily step between my laptop screen and face. Yes I know, we may have an obedience problem.
So I’ve started to be sneaky about things, getting one of those food puzzle things for her to do. However the only time I dig it out is when I’m marking, grading or commenting on papers, assignments etc. Or I give her a special treat, he that will last her a relatively long time so I can get on with what I was doing.
This may, or may not, be a smart thing to do on my part, but for now it works. And it lets me do my homework without needing to provide a dog of an excuse!
One of the questions I am frequently asked, when people learn I have lupus, is why do I bother to continue to work. Some of this may stem of a lack of understanding how lupus affects me. Although I have had more than a few comments about how it would be nice to have the chance to not work for health reasons and still have the bills covered.
I’m fortune in that despite my lupus I can still work. Sure there are days I have to drag myself to work, force myself to work the day and drag myself home. But those these days aren’t the typical ones. The typical ones are with aches and pains and some hurdles, but the joy of what I do overcomes anything else.
I Suspect people view this as they do retirement. While we are working, slogging through the thick of things, we dream about those days when we don’t have to work. The days when we can sit at home or do whatever we please.
On the days lupus gets in the way of work, it isn’t like I’m out having a grand time of things. I’m miserable and unable to do anything. And i suspect that if it came to me not working, I’d go crazy with time. Sure you can fill it up, but on a very small limit I’m not sure exactly how much you can cram into that.
It truly is one of The oddest things that has happened to me since being diagnosed with lupus, I do not dream of the day I can retire. I relish each day I go to work, even though I may complain about a few small things here and there. Because I know how fortunate I am to be able to work and continue to do what I love.
There is something wrong with me. Seriously wrong with me. No not lupus, although that is something that is wrong with me, wrong with my immune system to be exact. But that’s not what I’m talking about.
I’m talking about how I should be resting, and yet I get this brilliant idea to try a recipe, or two or three. Today is just one fine example of what I’m talking about. You see I received a lovely recipe I have been wanting to try for a while so I had decided that today would be the day for me to try it out.
And my brain, while I was out obtaining the orange I needed for the recipe, decided that a nice Quiche should be made as well. My brain even pointed out that I could easily acquire the items needed for the Quiche since I was already at the grocery store. My brain suffers from overconfidence in this department. How do I know you ask? Because as I was heading to the checkout, I saw some cherries. Naturally my brain said we needed to make oatmeal cherry muffins was the dessert recipe was cool, but before we made the Quiche.
When I got home, my brain and I started to get to work on the dessert recipe. All was good. Mid-way through the muffins, I told my brain I’d need a small break before Quiche making started. Brain argued with me, pointing out that we could do this and we didn’t really have time to wait if we wanted the Quiche for our meal.
And so dear friends I let my silly brain talk me right into the deep end of using all my energy etc for a meal. Thank heavens brain knew enough to know that if we started and finished it all early, which we did, we could just rest and relax for the rest of the day and at least have food set for tomorrow.