Mulligan Stew or Let’s Come Back To That Again

Do  you ever want a do over or mulligan for those of you who are golf oriented?  In the course of my life I’ve had several times where I wanted that one back, or this one to do over.  It happens due to the rush of time, not paying attention and a whole other bag of reasons.  But I think now if someone were to ask me if I wanted to have one to do over it wouldn’t so much be my life, but my reaction to my health.

I know you can’t wave a magic wand and make lupus disappear.  There is no magic pill, diet or place to go that will cure from this illness.  There is just a whole bunch of things to try.  Some of it works for some people and fails for others.  Something might work for a little while and then suddenly lose the effectiveness that made it so wonderful.  You just have to roll with the punches as best you can.  It’s frankly a bit a dance contest where the music keeps changing and thus influencing what you dance and how you do it.

It’s tiring and never-ending.  So if I could have something to do over it would be how I’ve reacted to my health in the past.  I might change some of the decisions I made when I was younger and thought I could just show lupus I was stronger than it.  I might have sat a few of the dances out rather than trying to prove to everyone that I was perfectly fine and completely healthy.  I may have not been as cavalier as I as with some of the choices I made when it came to treatment or travel (I’ve been known to skip treatment if a trip was planned prior to the treatment being offer).

Of course if I was granted a chance to do over there would be a ripple effect.  That is to say that the one I changed at a specific moment in my life would spill over and impact other aspects which could result with me not being where I am now.  And although I complain about some of the aspects of my current life, there’s more that I truly appreciate and am grateful for. So let’s just skip the mulligan for now and perhaps not count the strokes as closely. We can come back to that later on.


Clear As

While researching software for work, I came across one company’s explanation for why they had made changes to the way the software interacted with Windows. The company explained it as follows: our goal has always been to provide a functional tool that allows our customers to be effective and efficient in…” Within the next paragraph the documentation moves on to say that “feedback from some of our customers has been that the software, while allowing people to be effective has not been all that usable so to this end we have moved to creating usable software…”

This got me to thinking, if you paid big money (this isn’t a small or unknown company) for a product and have now been told that while it’s functional it isn’t usable what would your reaction be? I would be seeking a refund, and a different solution to my needs. There were also several typos in the documentation which did not reassure me that they cared all that much about this document. And naturally if they don’t really care about this document, what else don’t they care about?

A quick online chat with the company showed that they did not think, nor did their customers think, that the software was not usable in the past. They meant it wasn’t as intuitive as it could be. They made changes to the interface to make it more user-friendly. That is completely different from saying something isn’t usable, yet functional.

According to “Jill” I was the first person to question the documentation so either I have a comprehension issue, or people simply didn’t read it. At any rate, even after the lovely explanation, I opted not to go with that line of software because “Jill” did not seem to think it was a big issue. And if clarity isn’t a big issue, what really is? Yes I want something that allows me to be productive, effective and efficient and sure I want it to be functional and easy to use. But I also want the company to be responsive and show passion for their product. I guess I’m weird that way.

Slightly Disturbing

There’s something slightly disturbing about hospital warnings becoming routine.  Well unless you work in a hospital, surgery or treatments being the norm of your day.  At that point it probably is routine in a non-disturbing manner.  I mean it’s just your job, you aren’t on the receiving end of warnings and cautions up to and including death.

It is slightly disturbing when it becomes routine to be on the receiving end of these warnings on a regular basis.  It is more disturbing to take it all as a matter of fact, almost nonchalantly.  And then suddenly it isn’t disturbing anymore, it’s just part of your medical interactions and you have long made up your mind to things such as your own mortality.

This is just all part and parcel of life with serious chronic illnesses.  You adapt, but perhaps your family and your friends aren’t as familiar and thus not as desensitized to it as you are.  After all part of dealing with serious chronic illness is understanding how it has altered your life and then making changes to strive for the life you want.  And so you are forced to confront or at least consider your own mortality a little earlier than you otherwise might have.  And this too can be slightly disturbing to some.

I’ve never really considered this aspect of my chronic life.  I know it exists, but it was the look on my friend’s face as I causally joked about being asked if I wanted life saving measures for an IV infusion that brought this home to me.  It isn’t normal, not for a healthy person.  And yet for me it’s so normal I don’t even think about it any more and that my friends is slightly disturbing simply because it is a clear sign of how far down this road of chronic illness I’ve already travelled.

Do You Scream Over Dropped Ice Cream?

Some days no matter what you do, you will drop your ice cream cone.  Sometimes it just cannot be helped, either because of weather or improperly prepared cones.  It is, as they say, just how the cookie crumbles or the ice cream drips and slips!

Today was one of those days where despite his best efforts, Beloved had his ice cream fall out of the cone and onto the ground.  He had to do a quick swipe to clean it up before the four-footed on came to help him.  When she cleans up it involves her tongue and it ends up in her tummy, even when it’s not good for her.  Unfortunately for us, when she does help the output of those results is the most unpleasant stuff you’ve ever encountered.  So we try to avoid those moments because a hose can only do so much!

Now Beloved dropped his favorite flavor ice cream which is just insult to the injury.  And it was a nice day, a warm day too so that didn’t help matters either.   So there is Beloved sitting there with an empty ice cream cone, his favorite flavor of ice cream now in the garbage and a nice day and he looks over at me and says “it’s only ice cream, somewhere someone has lost something far more serious and important.”  Because now and then Beloved puts it all into perspective, and because he saw that I had gotten him a refill of his ice cream!

A Good Ramble

Sometimes, if the weather and circumstances are just right I will let the four-footed one pick our entire walking route. If the weather is dirty I will direct her on a shorter course, the same if I am in a hurry. But if there isn’t anything pressing to do and the weather isn’t too bad, we have an adventure of her choosing.

We may start heading south through the neighborhood and then cut sharply to the east to take in the open spaces or she may decide to slowly follow her nose towards the west (a favorite bakery is ten blocks to the south-west of us). Still other times she will insist we head to the north first.

We never stay travelling in just a north or south direction. We roam across the terrain like a kite buffeted by winds heading here and then suddenly there. This normally happens when she has decided that her nose should lead the way. Her nose does not like to travel in straight paths; we range in a zig-zag pattern. Other times she will have caught sight of marking flags and we must follow their heading until we get distracted by something like a bird, or a leaf.

When she gets to pick the route, she forgets that one tiny, yet very important piece of information. You know the fact that you have to walk all that way back home too. She’s all too happy to head out on the adventure, but she will struggle to walk all those steps back to her comfortable bed. She will bounce up on hind legs demanded I carry her (she has an issue with her hips) or simply drop to the ground in protest to having to move even one more step. No matter how many times I remind her we have to walk all that way back, she ignores me. The pursuit of the adventure is too great and who wants to be bothered with something as silly as logic?

Today was one of those days where the weather was just right and there wasn’t anything pressing to do so we headed out for a ramble with her making the decisions. Yes I know, the owner should always be in command, and to an extent I am if I choose to enforce that. But she was happy, ears flopping as she bounced along and I had no particular place to visit so she led.

We ended up in an area she had never been to before, a place full of new sights, sounds and smells for her to investigate. We leisurely walked into an opening, then ran to a bush full of birds before slowly making our way back to the opening again. We pounced on an unsuspecting plant which happened to move in the gentle breeze and then found the most wondrous tall grass to hide in before we slowly made our way back home.

Both of us returned home happy. She found her bed and her stuffed dinosaur to flop down with. And I wondered back to when I was very young and would head out on adventures with my parents. I’m pretty sure I got to pick at least part of the journeys we went on if not the entire path. I’m also pretty certain that like my four-footed one, I would forget all about having to walk that whole way back home which would result in needing to be carried at times. I’m also pretty certain I would come home happy, probably tired and ready to just flop down while my parents would be able to marvel in the comforting silence which would settle over the house. That is until I was ready for the next adventure.

Paint In The Shade Of Who Knew

Who knew that choosing a paint color would be so hard? Who knew there was upwards of a million shades of white? When did white stop being white and become “cold white” or “first snow white” or “pure white”? (I’m pretty sure my parents said these kinds of things at some point which promptly lead me to calling them old…) 

All I really wanted to do was get the paint colors sorted for the den. Nothing fancy, nothing full of controversy or anything like that. Just get the paint colors picked and purchased for the den to be painted. I wasn’t even asking for the den to be painted by a specific date. Just you know get things all lined up so that a friend of mine could help out since he is a professional house painter and things are slow in his world right now. So when he phoned me and said things were winding down for him and he would be able to come and do some work for me, I thought the right thing to do was be ready for when he could get around to the painting. 


What should have been simple turned out to be anything but simple. Another of my friends told me my first mistake was bringing Beloved with me. She should have suggested this before I left with him, she should have gently suggested it the minute I told her I was going to be buying the paint for the den. A gentle question would have been a good way to start the conversation. But she said nothing of the sort; she just said that how the paint looked in the store would be different than how it would look in the house. I told her that was why they made all those little paint card/chip samples for you to take home. 


Instead what happened was after two hours in the same store, I sent out a text to some friends, letting them know I may in fact die in the paint store. If not die, I could see myself sadly rooted to the floor while Beloved did his thing. Two hours, and that was just to check out the shades of white, never mind the fact that I wanted another color in the room as well. Sadly none of my friends seemed all that concerned about my eminent death or at least rooting as none of them responded. 


The poor clerk, tired of trying to answer questions from Beloved, who for the record has no clue about things like painting, wearily suggested that Beloved grab a whole bunch of the sample cards in the shades he really liked so he could do various squares of “size” in the room with the paint samples. I applauded the creativity, but wondered why it only came after two hours. 


Beloved, however, is not a man to take subtle hints. Frankly Beloved is often a man who needs things spelled out in large block letters as a hint. So he stayed, because after all we had to get the OTHER color. By this point I was ready for an all-white room. Heck throw some padding on the walls and let me just bounce off them. I would be fine with that. But not Beloved, which is why the clerk quickly vanished when he say Beloved head over to the OTHER color sections. 


The only vanishing act I could pull off was to leave the store, to get a coffee and a walk before I went crazy. In case you are wondering we still have little squares of various shades of white on the wall and that’s about it. No OTHER color has been chosen because now the man thinks that white might not be the right choice. 


Who knew being in a relationship was really about trying so hard to commit murder because a trait you used to find enduring is now just…annoying?

Chronically Complicated Marching

Time marches on and we kind of march with it. Some people march with amazing flare and style. There are people who can march and juggle at the same time. Others seem to glide along, feet barely touching the ground. If you happen to be like me you tend to march out of step, stopping when you should be going and sometimes getting off the path, but you still march.

Regardless of your marching style, or the length of your march, it all ends the same…in death. When you are young you don’t consider that at the end of this grand adventure known as life comes a stopping point. You march and dance like crazy wanting time to go by faster and faster. And then you hit milestones that show you time is passing as you find your own way to march. At some point though you understand that there is an end to this marching, that there will be a resting point and you begin to contemplate what that rest will be like.

If you have a chronic illness like I do, you may be more aware of the rest point that peers your age are. It comes with the package I guess. Or maybe it’s just the reality of too many hospital visits with overworked and somewhat detached medical professionals. So you start to think about what you want to happen if your march comes to a slowdown while you are in the hospital. There are so many choices from doing everything heroic to just letting things be as they are. There is this thing called a medical directive, or living will to be filled out.

And it hits you, the absurdity of this all. You are in the hospital, getting pumped full of medications and treatments which are designed to help maintain your health, extend your life even. And someone pops into your room with a clipboard and a cheerful voice and tells you that although it’s an uncomfortable topic, they want to know if you have a medical directive. If you don’t, this nice person will proceed to go through the information that basically comes down to, in the event your heart stops beating or you stop breathing do you want: A) to be resuscitated or B) natural termination.

So you are in your hospital bed, maybe being pumped full of poison to keep you alive and you are now asked if you want them to take an measures to save you if something else should go wrong. And you state your answer and if you are like me, you realize you are a bit of a hypocrite. Because killing off your own immune system with toxic poisons is not natural. Nor is it dignified, not really. And yet you choose for your own death to be natural and dignified.

When the march comes to itself final resting point for you, you want to take the rest, on your terms in your own way. And that’s the thing that I struggle with the most as I battle with lupus. Sure right now I’m taking the medications and treatments on my terms, deciding what I will and will not do based on my own risk assessments. But at the end, I want to die on my terms, if that means with medical assistance so be it. But until then, I am, in my own way, asking the medical community to extend my life with this illness. And it’s all absurd, but it’s life. Life with lupus the chronic complication.