Some days you just have to give in and have that slice of pizza or two. Or perhaps it’s a day that just calls for a slice of cake. Some days, these are the only things to get us through. We shouldn’t feel guilty about giving in to this once in a while.
Today was a pizza day for me. Well okay, if I had thought it through more closely cake might have been the answer. But pizza worked. So yes even though it’s not ideal for me to consume it, I tossed caution into the wind and had pizza.
Friends, I was bold. I was fierce. I ate two slices. I know, shocking. But I refuse to feel guilty about this. It was a rough day. Pizza was a healing balm after a day with many hiccups and issues.
Beloved partook of the pizza as well and there is plenty left for him to munch on later on if he so wishes. I have had my pizza fill for a good while now. Now cake, well cake may be another issue. Come to think of it chocolate may be used as well. But not now. For now I am in a place of contentment. And I refuse to feel guilty about reaching for one or two slices of pizza. I also refuse to feel guilty for making the choice to have pizza based on the day I had. Besides, I know it’s not ideal with lupus nor the medications I take. But it’s not the end of the world either.
My eyes, I protested. My eyes, I cried. He ignored me. He went on writing stuff, and then shining a light in my eyes. Yes it was a trip for an eye exam. Although it felt like absolute torture.
I’ve never been good with eye drops. I mean I have never been able to put them in my own eyes. And I’m not much better if someone else puts them in my eyes. And yet the lovely eye doctor insisted on outing different drops in my poor eyes.
My eyes protested. I cried on the inside and the lovely man said it was fine. Of course he wasn’t having his eyes tortured. And I’m a bit suspicious about anyone who wants to play with human eyes. I mean what sort of person does that?
Well in this case a man who believes everyone should be able to see. A man who understands lupus is not a simple illness, and it will impact eyes if given the chance. A man who insists that I will survive the eye drops. Of course he is right, I will. But in the moment I sometimes forget.
I forget to breathe. I forget anything other than the stinging in my eyes. And then, naturally things work just as he said and I can see again. And breathe. And once more I am reminded how fortunate I am to have him in my life, checking my sight.
I’m falling apart. Tiny pieces of me are breaking free, dropping off or just disintegrating. One day a finger, or part of a finger, my just fly off while I’m typing. Perhaps as I’m walking my foot will just decide to go a different way, without my body.
Okay maybe it won’t really happen that way, but it feels as if that may actually happen. I’m putting that out there because my specialist assured me that neither of those things will happen. Yep, it’s been medically asserted that my finger won’t fly Orr nor will my foot detach and go its own way.
This should be a relief for me. But it’s not. Because my specialist likes to be “thorough”. And so after a slight pause, said specialist turned around and assured me that my joints are disintegrating so I will feel more “loose”. He also assured me that my bones will continue to do their crumbling down routine thanks to lupus and Osteonecrosis. Nice.
I was good with the first assurances. I could live with those and accept them. I’m not so sure that I needed his complete honesty with the rest of it all.and so now a bit of my joy is also falling apart. But that’s temporary, unlike my joints and bones. Still, at least my fingers won’t fly off and my foot won’t shuffle down its own way.
He finished cleaning up the small shards of glass while I sat down trying to figure out what I was going to do. We were down to three glasses, five plates and three bowls. Yeah I had a day of dropping stuff. He never said anything as he cleaned up after me, he never said a word.
I was sitting there staring at the hands that betrayed me, thinking that if he had stocks in crockery we’d be good to go. But he doesn’t. Of course I was also wondering what else I would drop, break or destroy. I was beginning to think I could change my name to the Queen of Carnage. And at this rate, Beloved might just want to stay on his hands and his knees.
The fact is, there are days I can’t win for losing. And breaking. And just basically lurching from one disaster to another. I’m not sure that he signed up for this. Heaven knows I didn’t. It’s not like I stood in a line up and asked for lupus, or all the fun things that come along with it.
Every time I think I have a handle on things, I drop it. And every time, regardless of my anger, rage, frustration and disgust, he calmly comes in and cleans it up. He is a kind man, this man who seems to spend a large part of his time cleaning up after me. He will say things like, “I never liked that glass anyway”, or “it is getting time for new dishes, I was getting bored with these”.
Life with lupus, heck living with someone who has lupus, is a bit like a broken plate at times. You can see how the pieces should go together. You can even fit them back in place, but they are still damaged and unable to carry the weight they once did. A small part of me wonders if at some point he won’t throw me out and keep the dishes! 🙂
Beloved is not the type of man to give in easily. He isn’t stubborn as per say. But he knows what he wants and he is not afraid to run an obstacle course or what have you to get what he wants. And if what he wants requires waiting, then so be it. If what he wants requires learning a new skill, no problem. What ever it takes to get what he wants in an ethical and moral way, he will do.
These are admirable traits to be sure. And if I’m honest I know I’ve done a few of these very things in the past myself. There’s nothing wrong with working for what you want and pursuing your dreams to your fullest, leaving no stone unturned so to speak. And yet today this very trait of Beloved’s irks me.
And it irks me because I do not like the impact it has on me. I like living my life freely, doing as I please, and making choices as I wish. Beloved on the other hand has this weird hang up about life. He seems to want to extend his. He thinks that everyone should do anything and grasp at any offered piece of advice, weight it and then try to extend life. He does not live with a chronic illness that is trying to slowly kill him. He does, however, occasionally live with me and I do live with said chronic illness.
There is a point where trying everything just gets, well, tiresome. And there are too many disappointments, twists and turns and suddenly you just don’t know where you are any more. So well Beloved doesn’t give up easily, he also hasn’t walked a mile or even one step in my shoes. Because he can’t. And what he can’t grasp now is that I’m tired of chasing the latest or greatest new thing. So I’m not. I’m just resting on that front, doing research and waiting. And he, for once, cannot seem to wait and sit still. It doesn’t come easy to him.
A long day at treatment today. It started off with labs have to be drawn and then redone before I was allowed to get my treatment. Somehow they forgot about me after the redoing of my labs and so I waited. I waited a little more. And then I started asking questions.
The problem with asking questions is that sometimes people don’t have the answers to your questions. So when I asked when I could expect to start my treatment, no one knew. As a matter of fact a few people assured me I wasn’t there for treatment, just labs. As though I was confused.
After a few phone calls and a wonderful specialist who responded to my concern, I got treatment. That was about four hours after I was supposed to get it. And since there was a huge delay, my normal medical staff wasn’t available. This meant new people who refuses to listen to me explain where they wouldn’t have any success with my veins etc. This led to another thirty minute delay. This all made for a long day.
Some people don’t understand how simply sitting in a chair while your body is pumped with toxins can be exhausting. Trust me it can be. The same as the hurry up and wait process. It can be all rather draining.
Beloved is a cautious soul when it comes to outdoor cooking. He basically wants an iron-clad guarantee that there won’t be even the slightest hint of rain within a hundred miles or so of where he is cooking. This makes for some interesting challenges when it comes to asking him to grill anything. (To be honest I find myself voiding he with the red day forecast from two different source, just to help persuade him some.)
Today was a day that had been precast to nice and sun filled skies. With forecasts in hand and a few updates in the morning, Beloved felt it was safe to grill trout and vegetables. Everything was going as planned for a nice, grilled meal when I just knew the storm was coming.
No you couldn’t see anything. Yes a very slight breeze was present, but I’ve discovered that my body, thanks to lupus and arthritis, seem so on be a pretty decent weather system. While I know experts say rain, cold and snow do not affect joints with arthritis, my ability to know storms are coming, and sometimes how severely or quickly, is also not my imagination.
I believe that it has to do with the change in air pressure more than a shift in humidity as per say. So I could feel this ache starting while Beloved was humming and getting things together for grilling. He ignored my warnings because it was a clear blue sky overhead. Naturally the rain held off until he was out at the grill with all the food on it. Buckets of rain, as if to let the trout swim once last time.
A soaked Beloved came in with soggy, slightly grilled food. His look told me not to say one word while he went and changed and the meal indoors.