I Worry About Charlie’s Mom or The Eyes Say It All

Charlie is three, not a little baby, but a big three year old.    I know this because  he proudly informed the whole waiting room of this important fact when he walked through the door.

Charlie’s mom may never get her eyeballs back down where they belong again if our meeting of Charlie is anything to go by.  From the moment they came into the doctor’s office until his mom went into the office with Charlie’s baby sister her eyes kept rolling to the top of her head.  How she didn’t get dizzy was beyond me.

Naturally Charlie decided the best place to sit was beside Beloved, perhaps because he was the only other male in the waiting room or maybe because it was the chair closest to the magazines.  More on the magazines in a moment.

Charlie managed to get himself up into the chair with no assistance although he had to turn around once he got both of his knees on the seat.  Beloved had a bemused look on his face the whole time he was watching this wee contortionist.  Charlie’s mother seemed relieved he had found a place to sit down while she checked in at the desk.

Apparently the baby sister was in for a check up and poor Charlie had to come along to keep her company.  Charlie told Beloved he would have sooner stayed home with the dog, but mommy said he had to come.  Beloved nodded in agreement and asked Charlie about his dog.

When the time came for Charlie’s sister to go in, Charlie informed his mother that he would stay in the chair so she told him not to talk to strangers or to touch anything.  He gave her the thumbs up and proceeded to find a nice fashion magazine the minute she walked away.  He spent a few minutes flipping through the magazine, frowning as he went along before he turned to Beloved and asked if he had a pen.

Now Beloved had heard the rules, no talking to strangers (although by this time Charlie was Beloved’s new friend) or touching anything.  Naturally Beloved asked Charlie why he needed a pen to which came the reply “to help these ladies!  They need moustaches!”

Thankfully Beloved did not have a pen and no one else seemed to produce one for him so it would seem that the new magazine would be spared some enhancements.  And yet, from somewhere Charlie found a red pen.  Not his ideal color he told Beloved, but it would do in a pinch.

When Beloved asked what the ideal color might be, Charlie looked at him and said “you heard the rules, no talking to strangers and no touching anything” in a stern voice.  He may have waged a finger at Beloved as well, I’m not sure because I had to turn away or I’d be bursting out laughing.

Just as the forms we were waiting for came back filled out, Charlie’s mother came back with the baby and asked if Charlie had behaved.  Charlie gave her this beautiful smile and said yes, but he did have to remind that man (pointing at Beloved) of the rules because he clearly was not listening. Mom’s eyes went all the way up as her face turned red and she mumbled an apology to Beloved.  Charlie was not impressed, mostly because he was showing off his enhancements to the models in the magazine…flamboyant moustachs on made up faced and triangle like cat ears in perfectly styled hair.

I’m not sure how mom was able to see her way out the door or to the car given how far her eyes had rolled up when she saw the art work.  At least the enhancements were somewhat stylish!

Chipmunks And Me

When I was younger, I used to feed animals bits of crackers and such. If you were a duck or a goose, chances are I would throw the cracker your way.  If you were a squirrel or a chipmunk I would place the bit of cracker somewhere near me for you to come and nibble on.  I might also have nuts or seed grass pieces to hold out to you if you were cute and fuzzy.

My all time favorite to feed was chipmunks, you see I loved how they would pack all the offered food into their cheeks which would get chubbier and chubbier.  I guess back then I adored chubby cheeks, and to a degree I still do, just not on me.  And unfortunately as part of my lupus treatment I take a steroid called prednisone which just happens to give me chubby cheeks.  Well actually what it does besides giving me chubby cheeks is an incredible appetite, which results in the desire to eat all the time.  Eating all the time can lead to more than chubby cheeks.  And chubby cheeks on me are not cute, not like they are on chipmunks.  Thankfully I do not stay on prednisone all the time!

Lupus Doesn’t Mean Laughter Leaves

I recall a childhood filled with many things, but what stands out the most is laughter.  My father was the type of man who told “dad jokes” before they were a thing.  When I was young these jokes were funny, as I got older they became groaner that still managed to get a chuckle.  My mother could not, for the life of her, tell a joke correctly and you’d end up with the punchline part way through the opening of the joke, which made for great hilarity nonetheless.

My own sense of humor may run a bit dark or towards the sarcastic flavor, but I still seem to find reasons to laugh.  Sometimes I’m laughing at myself, the hopeless predicaments I end up with when lupus is really flaring.  Sometimes I’m laughing at something the four-footed wonder has done.

The fact is, I laugh a few times a day.  Every day.  I cannot imagine life without laughter. And evidently my doctor agrees with me.  Laughter, according to his reports, goes a long in managing the stress and other impacts of chronic illness.  Unfortunately he cannot, nor can any other Doctor, actually prescribe laughter.

It is up to the patients, the warriors, the ones the frontline to find things to laugh about or at.  Today’s laughs were courtesy of lupus combined with my four-footed companion.  You see sometimes lupus makes me exceedingly clumsy.  Add a small, agile and highly impatient dog into the mix and great hilarity ensues.

Lupus, dear friends, does not mean the end of laughter.  All you have to do look beyond the condition and face life ready to laugh.  Trust me, I know from experience.

A Funny Thing Happend On My Journey With Lupus

There is a funny thing that happens when you are diagnosed with a chronic, invisible illness. It’s funny, but not in the “ha ha” sense of things. Rather it’s funny in the sense of odd, peculiar and unusual. And what is this funny thing you might ask? It’s called the cloak of invisibility with a shield of a visible label. I know, sort of defeats the purpose doesn’t it?

Let me explain…once you have a diagnosis in the medical world, you end up with a label and are forever after referred to as that label. I have become “lupus patient”. Let me share with you…on my last visit to the hospital I was admitted as “lupus patient Sally Sue”. I wasn’t “Sally Sue who happens to have lupus”. I was up front and center a lupus patient, name coming after everything else. When this happens enough times you end up in a strange situation where you find yourself identifying and maybe even referring to yourself in that way. You become your label. And what a powerfully visible label it is!

When I have medical appointments, I am “lupus patient Sally Sue” who also must be deaf or perhaps not worthy of some medical specialists time. They talk into records (for transcribing later on), they talk at me, but never to me. After all I am “lupus patient” first and foremost. As if I have become something of a case number.

At the same time as all of this is happening, there is a huge chance that you are trying to be “normal” for loved ones, friends and whoever else you deal with. You don’t look sick; you don’t want people to see you as a burned or such so you simply pretend things are fine. You become creative though, in your invisibility cloak. You can’t keep appointments, you miss important outings, but you get creative with the reasons why you weren’t there. “Oh that was on Tuesday, sorry I had (insert whatever excuse avoiding the fact you were too tired, too sick etc.) suddenly come up. Next time I will make it.” You smile of course and are so sincere when you say these words.

Keep in mind if you say it enough times you soon won’t be invited anymore because let’s face it if someone keeps turning down invitations or has to leave early (insert other items here)why bother continuing to invite them? So you soon find yourself off of guest lists, off of invitations and such. You become the person in the room who no one really sees any more.

Of course there is a pretty good chance that you won’t want someone to see you, not the real you anyway. I’m talking about the you that feel ready to burst apart into a million decaying or damaged pieces. The you that, if you looked how you felt, would be locked up on charges of frightening people. I frequently feel as though I’m something out of a Tim Burton movie, or perhaps Beetlejuice. And now and then I want to shout at people, remind them I am still here, but not if it is as “lupus patient”.

Poo-Poo To Planning

Why is it that when you plan for things to be relaxed and laid back, all the preparation for that to happen seems so intense? Or other people feel a burning urge to help you ensure that everything will be laid back or relaxed. But the only way they can help you reach that goal is to first of all give you a whole armload of things that need to be done PRIOR to you relaxing?

I’m perfectly okay knowing that when I’m back from my break I will have a million things to catch up on and finalize and all of that. But apparently the very “in control” type of people require that all the work is FINISHED before you relax. Perhaps its fear that if you don’t do it in advance you will be too relaxed when you come back to understand the urgency of things.

I really just wanted a few days to enjoy some down time prior to school starting up into full swing. Keep in mind that this is what I wanted. Not what happened. Not what was planned. Because you see what happened is that I foolishly mentioned to some people, a handful of people whom I thought I liked, what my plans were. These people, who again I thought were like-minded, decided that some of the things we’d be working on AFTER the relaxation period should probably be addressed prior to my down time. Just in case things got a bit deeper than anticipated, that way we’d have a buffer of time if need be. Notice that this just occurred to these people after I said I was going to be missing for a short period of time.

So what really happened was an insane amount of scheduling and rescheduling as well as assigning actions to people for things to be done in an impossibly short period of time. This was followed by a meeting. A meeting where a lot of the people admitted they had not completed their assigned actions. Where other people completed part of their assigned actions, but only half-heartedly because we have lots of time don’t you know. A meeting where I finally spoke my truth and told everyone that I was less than impressed with them pushing things ahead because they were afraid I would be too relaxed. A meeting where some even else honestly said they felt more stressed since he meeting when the idea for the meeting was to have people less stressed.

Perhaps the trick is to do things just in time. Such as let people know just in time that you will be away for a little bit. Don’t give them too much notice as that will create issues. Or perhaps don’t plan for anything until it’s time to do whatever it is you will be doing or not doing…

Remembering

Memories are a strange thing.  You think in the moment that they will remain crystal clear and sharp always.  But the mind slowly makes things fuzzy and blurry, especially when it comes to people and animals that you’ve loved and lost.  Maybe it’s a good thing.

Some memories are easy to recall, taking back to a time and place.  Others take me to a feeling. I can’t imagine not being able to recall my memories, they are a part of my very being.  They are my history, my experience and basically help to form the person I am today.

And yet there are diseases that rob you of your memories, leaving you with an empty slate.  A part of you not there any more, not like you were.  And sadly for those who love people who have lost their memory the memory that is left is of their loved one lost in some other place.  So in a way the memory loss affects two or more people even though only one has the disease.

I can’t imagine life without my memories, and a part of me lives in fear of the what if.  What if I lose my memory?  Beloved once jokingly told me that I wouldn’t know that I had lost my memory, once it was lost.  If only that were the case, if only there was some easy way of managing this, but alas that doesn’t seem to be the case.

We joke, Beloved and I, about losing our memory when we forget where we placed the phone or the keys.  We joke because these are small things, typical things people forget all the time.  Innocent moments.  But are they the hint of something more?  You see here is the rub, we could get tested, but we are afraid.  Afraid of a potential outcome, allowing fear to paralyze us and hold us in some strange dance.  A dance that maybe has us waltzing with faded memories while listening to unfamiliar music no thinking we’ve always known this tune.

Aisle One, My Mortification

“Clean up in aisle one foamy poop!”  Not words I’ve ever heard before.  And foamy poop?  Um what?  Thank heavens I’m not on clean up duty, just here to get my dog and get out.  You see the dog had to go to the animal doctor and this time he had to stay for w few hours due to a delay.

So I decided to run some errands because they need to get exercise once in a while! 😂 Get it?  Errands, run, exercise!?  Um so I thought I would do some errands and then swing by and pick up the dog.  Having completed my errands, I was back to get the dog. I had just walked in, gotten in line (two people in front of new) when the announcement came out from the back.

Of course it would be my four-footed bundle of fur who just happened to have foamy poop and spread it around aisle one.  How do I know, because when they took me back to where he was I seen five aisles and mine was in the aisle labeled one.  And right by him?  A puddle?  Yes puddle of something rather unpleasant, aka foamy poop.  Apparently this happens when he gets nervous or worked up.

Now I’m not sure what the other dogs or cats back there did when my dog had his most unfortunate release.  I mean do they laugh or have a wave of sympathy wash over them?  Maybe they just don’t care, but I know my first thought, upon hearing those words were along the lines of “whoever that poor unfortunate soul is, hopefully it isn’t anything serious”.

So for those of you wondering, it was nothing serious, rather than needing a thorough washing of the neither regions.  The dog was very nonchalant  about the whole thing.  I think I was mortified for him, which is silly because poop happens, foamy or otherwise.

Poop is a biological function so to speak and yet I get embarrassed or uncomfortable when it comes to this.  Why do we condition humans to be uncomfortable with natural functions?  Now don’t get me wrong the foamy bit might not be completely natural, but poop is just poop.  We all do it, it’s natural and healthy and I’m utterly mortified by it for some reason.