The four-footed companion doesn’t understand the concept of “too much”. As in too much heat because it was beyond war mush today. Which leads me to the next too much which was too much sun. Too much sun isn’t good for me, is great for making lupus worse, but my medications have rendered me so sensitive to the sun that when I have too much I swell up and go an odd pinkish purple. Call me the human puffer fish during those moments.
Now to be fair, the four-footed one found plenty of shade, that which was cast from parked cars and such. It would be fine with me if the shade provided by parked cars covered more than my feet and ankles. With the majority of me exposed to the sun I tend to rely on sunscreen and clothing with sun protection. It also means that I tend to be covered from wrists to ankles.
So today was a day of too much because the weather forecast indicated cloudy and so I packed different clothes for this trip. And thus it took only a short period of time to reach my too much threshold.
I wasn’t always like this, I used to enjoy the sun and the heat and never grasped the concept of too much sun or heat. Sure I still wore sunblock but I als didn’t find myself relating to Dracula as much as I do these days. There simply was no such thing as too much sun or too much heat, rather they were just glorious days. I miss those days..
Today I’ve been dreaming about food. Well dreaming is probably the wrong word, lusting is probably more accurate. I have been lusting after food today. No don’t misunderstand dear friends, I love good food and I love sharing it with people I enjoy so it’s not unusual for me to think about food. I’ve been known to plan whole menus as a means of pleasantly passing time and I’ve no shame in this either.
However today I’ve been running on the see food, think food, desire food sort of cycle. I blame my medications partially for this shift in my food relationship. I also blame people sharing delicious ideas and placed with me all in a very short period of time. This sharing lead me to feel like I need to try it all, right now. Not that I’m complaining about people sharing these things with me; whether we break bread together or separately but shared experiences I think is a wonderful thing indeed.
The thing is, though, between my medication, my lupus flare and the insane hamster on the wheel that is my brain, I fee exhausted just trying to figure out what to do and try and when. And of course this makes my health teeter totter a bit more. Again I am not complaining for I am blessed, truly blessed to have wonderful people to share food with and more importantly to not having to worry about where the next meal comes from. I just need to tame the lusting of said food into something more manageable so food isn’t falling off my plate!
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!
When I was growing up we had a neighbor who spent every moment she could in the warm sunshine with as much skin exposed to the sun as possible. The minute it was warm enough she’d be sunbathing top-less for hours on end until she reached a golden color I related to well cooked French fries! 😊
I myself did not sunbathe as per say, but I also wasn’t afraid of the sun. I would acquire a decent tan from playing outside regardless of how many layers of sunscreen my mother slathered on me. I’m pretty sure I simply out-wore the sunscreen during that time, nothing deliberate and no thought of getting a tan.
After getting diagnosed with lupus and being placed on a variety of medication which made me sensitive to the sun I tend to avoid bright sunlight as if it were the plague. This means that I am starting to match Beloved glowing white color. No, actually what it means is that I never go anywhere without wearing sunscreen and having the stuff with me at all times. It also means wearing sun protective clothing with long sleeves and legs. And yes a rather large hat.
I didn’t start my lupus journey with such avoidance skills. As a matter of fact I flaunted my exposure to the sun, because what could really happen? In case you are wondering what could really happen is that my hands and feet were swollen to twice their normal size. My skin was sensitive, itchy and a blotchy reddish-purple color. And yes friends, this had to happen more than once before I clued in that the sun and I have a different relationship.
Now id like to say that since those days I’ve never had a run in with the sun again, but there have been the odd times when it starts off overcast and somehow while I out walking or whatever the sun plays peek-a-boo and I get caught not exactly prepared. Thankfully those times are very rare. Also thankfully I don’t run and hide from the sun either. We just have a different relationship now as I said before, and I still enjoy it in different ways.
I am a pro at making scrambled eggs. If you need anything mixed together, I’m your girl, provided you don’t mind how I mix it together. I mean if you insist on having a martini stirred and not shaken, the you better get on that on your own. Shaking, twitching and tremors are all my methods of mixing things up. 😉
Of course there are times when I’d rather have a steady hand, such as carrying coffee or trying to eat. Unless it is eating with chopsticks, then I don’t mind the shaking in my hands because I’m just awful using chopsticks and at least I can use my tremors as a reason why I drop more food than I pick up when using them! 😊 And I confess, when Taylor Swift’s Shake It plays I feel like she’s singing it just for me. Granted I don’t think this is the shaking she is singing about, but I will work with what I got!
I’m not sure if I developed the shaking and the tremors from my illness or the medications used to control the illness. And the fact is, even if I knew what created it, I’d still have to deal with the tremors. So as long as you don’t mind the odd slosh or flying droplet, come on over and see what’s shaking today!
Wouldn’t it be nice to have a memory like Neo from “The Matrix”? Basically you could download whatever you’d need to know and it’s there for you to grab when you need it. I’m not really sure if there is a cap to the capacities or the storage space that would be required if we were to download everything we could ever possibly need, but hey it would certainly make things like studying for exams a whole lot different.
Some people swear by online games designed to work the pathways of the brain. People claim that they have seen a huge change in their ability to recall things since working with these “games”. How much of that is psychosomatic is yet to be determined, but there is something to be said about the power of belief. If you believe by playing these games you will sharpen or hone your memory skill than surely that becomes a self-fulfilling prophecy, a subconscious shift of effort dedicated to a desired outcome if you will.
Sure I could use a bit of refreshing on some memorization skills. Heck I have probably forgotten far more than I even realize through the simple process of deciding I no longer need to know things. I can accept this. What I struggle to accept is having a memory less like Neo and more like a character from “Finding Nemo”, namely Dory! 😊
I don’t have anything against Dory, and she certainly was a good friend to Nemo, but I honestly am worried about not being able to remember anything. Rather not being able to move things from my short-term memory to my longer term memory for recall later on I should say. I guess we all fear losing memories about who we are, what we enjoy and suchlike. But when you have a condition like lupus, one that can cause cognitive issues and you tend to make your living using memory and such, it becomes scary on a whole new level.
I find myself struggling to recognize if lupus is impacting my cognitive skills or if the haze I sometimes must stumble through is a side-effect of my medication. I confess of all the things that lupus has changed in my life, this whole potential to mess with my mind and memory is what I cannot on any level accept. Okay so technically, technically it isn’t going to care whether or not I accept the changes, but you catch my drift. A well-meaning specialist who told me that as we get older we have so much going on at once that we struggle sometimes to find the right word/thought/concept in a moment of pressure, and therefore I shouldn’t worry about what is a natural state. But if I don’t worry when I’m not seeing the results I want, will I forget to worry further down the road? Will I miss the signs that should cause me to worry? Perhaps, just perhaps, Dory was on to something after all, provided you aren’t preparing for a test or such.
So apparently I’m falling apart. As my rheumatologist put it, it’s a surprise you haven’t shattered into a millions of tiny pieces that cannot be put back together again to be complete or whole. The latest episode of falling apart started with a wee twinge, just there in my thumb. Nothing overly painful, just annoying as heck when I bent my thumb or put pressure against it, which evidently is just about done with everything I do.
A few days after this annoying pain appeared I happened to have an appointment with my rheumatologist and in passing he noticed that I was having “issues” with my thumb so he asked about it. Actually he asked me why I didn’t mention anything about my thumb when he asked what was new. The truth is, given everything else that is going on and other pains that are far more noticeable, it didn’t occur to me to mention anything about the thumb. I guess I figured it would work itself out in time, which was not at all what the rheumatologist thought was the smart thing to do. He insisted on something called x-rays.
He never mentioned to me why he wanted x-rays done, just insisted I walk over to the x-ray clinic immediately and have them done. He actually walked me over there with the requisition in his hand. Probably because he knew that if he left it up to me to do after my appointment with him, I’d never bother getting them done. So he walked me over, handed in my requisition and waited for the results. Results which showed exactly what the thought he would see – lovely fractures – and something I had not considered. (Then again I did not go to medical school, although having a chronic illness such as lupus sometimes makes me feel like I’m in a custom crash course.)
As he pushed his glasses back up he told me that we had come to a fork in the road, one where we would now have to weigh the benefits of the current treatment against the harm the medications were doing. Yes for now they are helping keep my organs safe, but at the cost of damage to my bones, which according to him, are just the beginning of the process.
He sent me home, advising me not to put pressure or weight on my thumb and to think about my options. Oh and to check my email because there would be more information coming through from him, other options to consider. I guess this is how it began for Humpty Dumpty as well.