Have you ever looked in the mirror and not exactly recognized the person looking back at you? Or am I the joy one, who at times upon catching my reflection in a mirror or window think, ‘that’s how I look,’ or ‘I don’t look like that do I’?
For the record, yes I have access to mirrors at home. But also for the record a lot of times I leave the house thinking I look a certain way and when I get to my destination and catch a glimpse of myself it isn’t the same as it was before. Sometimes it is my hair that throws me off. But other times it happens when I’m dressed up and made up. Yes I know I’m dressed fancy, but since that isn’t always my style, it always catches me almost unaware.
Hey it isn’t always a bad thing either because sometimes I’m impressed with how I look. Mostly because it do snt match how I feel at that moment.
To be honest, if I looked more like I felt, well let’s just say it would be a messy up thing. Think goofy childish undead being with horrific decay and joints on fire. That’s a rough description in a gentle, or kind way of describing things. Some of that is coming from lupus, but some of that is because I do not feel all grown up. Yes I know I am technically an adult. And yes I have an adult job and responsibilities, but I feel like a rebellious teen who can still slip into that wonderment and glee of a young child. And when you feel so different from your external appearance it can be a bit of a surprise.
But maybe y’all don’t ever get caught by that reflection mirror. It is a shame if that never happens to you.
Now and then a little something most wonderful comes into your life. Today that was an extremely large quantity of top quality chocolate. The kind of chocolate you savor and enjoy. When you come into something this wonderful, in a deliciously stunning of quantity, you plan what to make with it.
Naturally chocolate chip cookies must be made, I think for me this is a mandatory thing when I have good quality chocolate. But there is a huge bounty of this and I do not need that many chocolate chip cookies. No worries, we have plans for other cookies too. And cake, let us not forget about making chocolate cake, with delicious ganache.
But being how I have been feeling and how Beloved has been preoccupied, I opted for something simple and comforting. Hence I found myself gently heating milk with cinnamon sticks and a split vanilla bean pod. Oh and a dash of sugar. I let this heat and gently infuse for maximum flavor. After fishing out the vanilla bean pod and scrapping out all their yummy goodness, I moved onto removing the cinnamon sticks. What I was left with is an excellent base to make delicious, flavourful hot chocolate.
With a sense of glee and excitement, I added chocolate to the milk and gently heated it before pouring it into mugs for Beloved and I. There is such thing as too much chocolate with this milk. Trust me on this! And oh yes we have enough chocolate for more comforting drinks and delicious baking. Because today we received a wonderful bounty of delicious chocolate sure to last a while.
It’s been an odd week for us. Four-feet required a trip to the groomers and two days later a trip to the bet. The groomers was expected, the vet was not. She got bite by a bug and started acting odd. Turns out that four-foot has an allergic response to this type of big. Shame she didn’t come with a manual so we would know without her having to have gone through it all.
In addition to the four-footed ones issues, we are kind of waiting on a second read of Beloved’s scans regarding cancer. It lingers like a horrible stench in the air. You just wait and regardless of the response, the wait is awful. Beloved though does the waiting game so much better than I do.
And then there is me. Well actually it’s lupus deciding to get in on the action as well. Nothing super serious, however it is super annoying. Just when I need a break, lupus decides I need my hand held. Perhaps we have a communication barrier. Or maybe lupus is a jerk.
So yes it’s been a bit of a week and now four-feet has stretched out on Beloved and is resting peacefully. He is reading recipes as if there is nothing else going on. He has run several menus past me already and it seems like he is content to carry on finding things to make for meals.
And I have tried to rest, tried to clean, tried to do research and a million other things because it has been one of those weeks. Hopefully we don’t have many of these. Hopefully no one else does either.
Alice, our neighbor, loves to watch sports. We know this because she has the volume up rather loud. And then over the volume she shouts and cheers. Perhaps she thinks the people in tv-land can hear her.
Alice is a loud talker by nature. She says it is from years of working in the service industry, as a waitress. Her husband made her get her hearing checked a few months ago, thinking she was going deaf. Her hearing is fine. She is just, as the doctor assured him, loud. Very loud.
Alice’s husband isn’t interested in watching sports with her. He claims her insistent need to talk all the time, about the game or at the players, makes it so he can’t stand to have sports in in the house. He goes to a local bar to watch the very thing she is watching at home. The bar, he claims, is not as loud as Alice. We took that statement and others with a pinch of salt. Until today.
Today we ended up at Alice’s house while a soccer match was on. She didn’t hear the doorbell. Nor our voices. The dog did. And the dog must have been able to get her attention. So into the house we went. A loud-ish television. We stayed for a total of ten minutes. Know it is rude, but we couldn’t handle any more of her yelling at players. She called someone moron, she demands a player be removed, she insisted a coach was an idiot,and questioned the mental health of a referee.
Beloved suggested she needn’t shout as it would give her a sore throat. She informed him she wasn’t shouting. Well to be honest as she said she wasn’t belong loud, we wonderd what loud would be like. We left, but ur eras seeking refuge from all the noise.
At home we sat in almost silence. We marvelled n all we could hear, until the game changed slightly and her team was losing. At that point all we heard was Alice, and the increasd volume of her tv.
Just once, just one time, could I please end up with a medication that has cool side effects? Just once! Surely that isn’t asking too much. Look if the medication causes hair loss I’m okay with that, but can it cause hair loss on the legs for a change? I don’t really have energy to shave my legs or get them waxed. I mean I have a limited reserve of energy, it would be so much easier of the hair loss worked in my favour.
Oh and what about was one that melted the fat off my body? Or let me sleep well without feeling slow. Is suppose that’s all too much isnt it? And how about nice, moisturized, and non-itchy skin? Can I have that? Or what about being able to eat what I want with no ill effects?
Okay if it’s asking too much for the medications to do that, why can’t lupus offer positive side effects? Oh I know. I ask too much and I get it. But honestly I’d like to get something fun or positive just once. Especially today. It would have been nice. But nope, lupus has to be, well, annoying. I know, I expect too much from a messed up autoimmune system.
But why can’t I get in on the super powers that exist for others? Listen I’m not asking for the full fancy costume, I’d settle for a cape. Or maybe some amazing bracelets or such. I mean it doesn’t have to be all out there. And nope I don’t need to leap over tall buildings, fly, or spin webs. I mean it,ugh the be cool to do those things, but I’m okay not doing them.
But I’d like something, just a little something for putting up with lupus for as long as I have. And yes I know, lupus feels the same way no doubt.
I struggle with a rather simple question. I’m just never sure how to answer it. I know that probably seems silly to you. Especially when I tell you what the question is. It is one we hear all the time and one you probably answer causally without a second thought. So what’s the question, you ask. It is: how are, or the variant, how are you doing.
Yep this question, or a variant of it, is my struggle. Yes I know I am a highly educated indivudal. Yes I know I have had this question asked to me repeatedly throughout my life. It doesn’t make it easy to answer on a regular basis however.
Sure I can say “I’m doing fine” or some variant of that. And sometimes that may be the right answer. But having a chronic illness means that I am not always doing well. Sometimes I am the opposite of fine, however to be honest with my answer means over sharing with some people. Perhaps I am foolish, but there are people who don’t need to know this struggle, not from where I sit.
Sometimes I am not worried about giving that information to someone regarding my struggle. Instead I debate if it is fair of me to share that burden or guilt with close fiends and loved ones. They all have their own lives and issues after all.
Soemtimes I wonder if I am doing okay or if something is wrong. So I’d rather not face that question. And yes, sometimes, I want to hide from my illness. This is easy to do when I ignore the question.
The truth is, a lot of times I don’t want to consider how I am doing. I don’t want to think about luous, or how hard things are, or what my pain levels are. The problem with all this is that even if the question isn’t asked, it is in people’s eyes.
So please, don’t ask me how I am or how I am doing. Let’s explore soemthing else!
Apparently Beloved and I are just not cutting it. Not when it comes to the four-footed one and playing. Sure we play with her. We play hide the eggs, we play chase, we play attack of the dinosaurs, and many more games. But it has been brought to our attention, painfully clearly by the way, that our playing is lacking.
The four-footed one now continues to play hide the egg on her own. She pushes it under a blanket, rolls around a bit, and then finds the egg again. And she taken to chasing her own tail, just to keep chase games up and running. As for attack of the dinosaur, she throws them in the air, lets them land on her back before she shakes them off and pounces on them. All of these games can be played for hours on her own. As if to show us how woefully inadequate we are as playmates.
If it were just play time we could probably mange things. But we do bedtime wrong as well. So she tucks herself in now. She just jumps up on our bed, wiggles down under the top blanket and settles in for a nice sleep. Never mind she has not provided space for us to get into bed and rest comfortably. In addition to needing to be tucked in, four-feet also demands the light get turned off when she is ready to go to sleep.
And obviously her feeding is lacking as well. Why else would she need to eat the neighbors cat’s food? Or clean up every crumb on the floor as well? And drinking is readily fixed by drinking out of puddles and such.
Obviously Beloved and I are dreadful pet parents. At least if you listen to the four-footed one! Or perhaps it is our interpretation of her behavior and she’s just being a dog, living in the moment with full joy and zeal.
When I was young, I was certain that hiding behind furniture, or under it, or even under the covers in my bed would make the bad stuff go away. Monsters n the room? No worry, just crawl under the covers, all the way mind you, and I was safe. For extra security, crawling headfirst to the bottom of my bed was always an option. The small problem with that is that now and then the sheets would be tucked a little more tightly and I’d get stuck, headfirst at the bottom of my bed. (Yeah I’m pretty sure my mother loved it when I yelled for her to rescue me during those moments!)
But this worked for other things too. Don’t want to eat th dreadful sprouts and mama was giving me that look? No worries, simply slide slowly off my chair, and hide under the table. Neither of my parents would suspect a thing. Granted I never stayed under the table for long. My parents were sneaky. They’d start talking about something fun they were going to do once they were done cleaning up and naturally I’d want to be in the fun. So I would slide out and then be confronted with the awful sprouts.
Honestly it is a shame that these techniques no longer work. Worried about a spell of bad news? Throw a blanket over your head and get comfortable in a small space. The bad news will pass you by! Afraid that strange lump is cancer? Hidin the closet! If only it were all that easy. Life certainly would be more enjoyable.
Of course life doesn’t work that way and hiding from worries, fears, bad news, and all the rest only makes things worse.
Someone gave me a bonsai tree a while ago. It came with tiny clippers, tiny watering can, and a long list of instructions. This tiny tree, ever so carefully shaped scared me like no other plant has.
Now I know there are faux bonsai trees, you know plants that aren’t really a boss I tree, just minute versions of a plant that you can trim and shape. They aren’t as old as proper bonsai trees. They may not have even had the attention and care these tress get.
There is something therapeutic I have been told, about working on and living with these trees. Calming, is what my friend said, as he gave me the beautiful container with the stunning tree. He also gave me the kit with the tiny clippers, watering can and instructions. And ever since, when I look at this tree, I get a sense of fear. What if I trim this tree wrong?
I mean how do you know what shape e tree is supposed to be? My friend said that I will just know if it needs more shaping or such. The watering is scheduled so that should be okay. But even that can be a bit tricky. What if the water is too warm or too cold? There are so many things that could go wrong.
I shared this with my friend and he laughed at me. He told me to trust the feelings I will get and the tree will tell me what it needs. I know it is supposed to be reassuring. However to me this is just more pressure. I don’t speak tree in any form.
Beloved suggested I meditate and the answers will come. Obviously he hasn’t listened to the issues I have with meditation. Is there some some special class I can take to learn all I need so I can hear the tree and understand it? Or am I just a lost cause and this poor bonsai goes down with me?
I’ve spent my share of time sitting and waiting. I’ve waited on cold, hard benches in hospitals and schools. I’ve waited in hard plastic chairs in hospitals, schools, motor vehicle offices, and libraries. Sometimes I’ve waited in soft and comfortable chairs. Usually if they let you wait in a soft and comfortable chair it is not going to be for good news. As if the chair will soften the blow of bad news.
Of course I’ve waited standing up and resting too. Sometimes it feels like a lot of my life is just spent waiting. Waiting for something to happen, waiting for results, waiting on news, waiting for packed, and so on. We all wait. It is a fact of life. What we wait for, or how long we wait depends upon the circumstances, but regardless we all wait.
And here I am waiting again. This time I’ve left the hard chairs behind to sit out on the ground and let the breeze join me in my wait. Where I wait doesn’t matter. The news isn’t for me this time. It is Beloved’s news. And once he gets it, in his own time he will share it with me. So today I wait outside, letting the breeze soothe the rawness of potentially bad news. I wait in nature, feeling for once a bit more calm in waiting than usual. Perhaps I should do this more often when I wait, but time will tell if this really happens.
For now I will wait out in the wind and hope that the news is good. Hope that we aren’t heading into another battle with cancer. But if it is, we will fight it, which means we will be waiting a lot. Waiting for treatment, tests, results and everything else.