The four-footed one loves to have her picture taken. Just tell her you want to take her picture and she will look up, all sweet and innocent, even if the moment before she was being a little devil. I’m not really sure if she understands having her picture taken, but she seems to. And she doesn’t seem to mind either.
I’ve never been a large fan of having my picture taken. After I started tea tempt for luous it got even worse. I mean it’s hard to want your picture taken when you feel awful. It’s hard to be cheerful or smile when all you can think about is the brilliant red rash across your cheeks. And please don’t ask me to smile of be anywhere near having my picture taken when I have had prednisone.
Prednisone makes me look and feel unpretty, and hungry. And it’s impossible to feel beautiful, or even okay looking when you have gained a lot of weight and have a huge, round face. It’s just so hard sometimes.
But sometimes you can’t choose the treatment that works with lupus.. Sometimes you have to settle for being so hungry you could and would eat everything in sight. Sometimes you have to settle for a round face, weight gain and feeling unpretty just to save your organs.
But you can choose to realize that what is staring at you when you look in e mirror is still a beautiful person. The vision in the mirror is just distorted. And it’s okay because you have bigger things to focus on, such as your health and how incredible you are. So let the distorted visit be in the mirror because it will disappear soon enough. But your amazingness will stay and sometimes pictures don’t show it well enough.
I wanted so much to visit with friends. We had planned is for ages. The weather was good. Lupus seemed to be minding the rules for good behavior. We were enjoying each other’s company and sharing stories, laughing and having a good time. And suddenly without warning I felt dreadful.
It wasn’t too hot. It wasn’t that I was in the sun. It was that lupus felt ready to join the party. Invitation? Luous didn’t care about the minor things like invitations and such. Nope. Lupus is brash and confident. So lupus just showed up. And got into the joining of the fun.
A dear friend noticed, before I was even fully aware, that my face had taken on a more reddish hue. She started to hover near by and say we’d get together again, sometime soon, while another friend gathered up items to give to Beloved so he could get me out of there.
And I sat there, feeling so dreadful it was insane. I sat there realizing I had no energy and we had a long walk back to the car. Back through a crowded restaurant and two blocks to the car park. It might just have well been a million miles for how I was feeling. Beloved casually got the waiter’s attention for our bill. He held bags in one hand, another was basically supporting me and then an amazing thing happened. All,of our friends sum,owned for their bills and walked us out and to,our car.
Bags were taken from Beloved so he could help me walk the million miles in what seemed like a ground now covered with sharp and broken glass. It wasn’t. It just felt the way in my joints. Friends made sure we didn’t struggle too much , helping me into the car. Others placed bags in the car and all wished us well.
Sure lupus cut our visit short, but what a visit it was! And when you have friends who get it, somehow it never seems as awful to just have to leave suddenly. This doesn’t always happen when lupus decides to make an unannounced visit, but when it does happen I am reminded just how blessed I am with people who help me manage lupus without a second thought.
Soemtimes,Es things that are beautiful on the outside are anything but beautiful on the inside. For example, seeing a talented ballerina dance on pointe is a thing of pure beauty. However if you were to look inside those shoes, you’d see feet that a lot of people would call anything other than beautiful. This feet shoe the toll of dancing on pointe, of the stress and hard effort. You may even see signs of the pain that comes with this.
I know bcause I used to dance. Before lupus, not just before the diagnosis, but before the sky,proms of the disease were active. And I worked hard to dance, to earn my pointe shoes. And the hard work showed in ruined toenails, red toes, bruises and such. From a distance I looked happy and beautiful and as if I was enjoying myself. And I did. But it came at a pice. And that price was my less than beautiful feet.
I recall getting my feet massaged once, while I was dancing, and it was incredible and my feet felt so different. But it was a very rare thing to do. Because I did not have pretty feet.
These days I don’t dance. I’m not able to dance and I’m okay with that. But I’ve never lost that idea that things that ar pretty on the outside ar not always the same. And in some ways, I may look passable on the outside, or even pretty. However on the inside I feel anything but that. I feel up pretty and ugly. Full of ruined joints and damaged organs and pain. And with lupus, no amount of massage will make that part of me feel amazing the way that foot massage once felt to my dancer’s feet.
And it’s easy to relate to this even if you don’t have lupus, because life and people can make you feel I pretty. Even though that’s not true. So if no one has said this to you recently, allow me to tell you that you are pretty.
I was asked today, that’s day of Lupus Awareness Month, if I saw myself as a warrior or survivor of this illness. It’s an interesting question, and one that is not easily answered. Part of the issue is how I interpret the words and the other part is how I see myself in conjunction to those words. Let’s breakdown for a moment.
Warriors are strong, battle prepared individuals who are typically trained for their fight. If only I had been trained for the life one lives with lupus. I guess it’s fair to say I have been trained, and still am in training, as it is on-the-job learning for the most part. Keep in mind what works for one person may not work for anther due to the individualized nature of the disease. So to me warrior doesn’t fit. It also doesn’t fit because I’ve learned that fighting against lupus is not going to help matters. I needed to learn to live with the disease to get ahead.
Survivors are people who have made it through something. As in there has been an ordeal with an absolute end. Again this is troubling too. Why you ask ever so politely. The thing is I am still living with lupus. As in it isn’t over yet. So no end, just a continuation. To take it to the nth degree, as current treatment goes, I will most likely die from a complication brought on as a subset of lupus. So I don’t see that as being a survivor.
I am a lupus patient. I am a woman who lives with lupus. I am an employee with lupus. The list goes on. But I am also so much more than anything …with lupus. There are, of course, whole aspects of me that do not need to have lupus. So I struggle with how to identify myself and my life with lupus. In fact many will point out that I do tend to post more about lupus during May and not much during the rest of the time. This is somewhat deliberate as an individual I am very clear that I am not my lupus. The drawback is I fail to advocate effectively. So I’m not sure how to answer the question. And I’m okay with that.
While I was out and about today, I saw a toddler with a cup of water. As he carried his cup of water, it sloshed around and soemtimes out of the cup, spilling. He kept walking to his destination, spilling as he went and by the time he sat down, he had less than half of the amount when I first started watching him. He seemed surprised and then angry that the water level was so low. Thankfully his dad was near by and able to fill the glass up again so the crying period was brief.
This child wth his spilling of water got me to thinking of my relationship with lupus. Let’s say lupus is the glass I have to carry. And the water is my energy and concentration levels. Naturally as I move about, I deplete my energy level a bit, just as the sloshing resulted in some lost water.
In theory I am aware of this, however as my energy levels deplete my ability to concentrate and problem solve also diminish. So sometimes when I get to where I am going with my glass, I have to thinking about why I am so tired or unable to do something. I know it sounds illy. But when you work hard at just getting from point A to Point B, you can’t always connect the dots. It’s like the water on the ground has already dried up.
This way of thinking or not thinking means that sometimes I’m like that car wreck you can see a mile away, but you still are surprised when you get near it. I will be shocked that after doing something. Am tired, or even more common, that a flare is ensuing. I know I am an adult. I know I have been living with this illness for a while, but sometimes I still get surprised by it.
Or maybe the truth is that what I’m most surprised by is that I don’t have any means of getting my glass easily refilled. There is no handy dad like figure with a large jug of water to come and just refill what was spilled. So they surprised, the frustration and angry periods can be so much more. And double that for the almost in tears, or actual crying phase.
This time of year is always a bit weird for me. No not because of the weather or such. Mostly it is because as the month of May wraps up, so does the majority of the stuff around lupus awareness. I mean it is fortunate to have a month to draw awareness to this misunderstood and baffling chronic illness. But the reality is, for me and everyone else who has the disease, it doesn’t wrap up when the awareness campaigns do.
Lupus is a 24/7 kind of chronic illness. It can even be a 365 days a year or multiple year flare. And it can be hard to see that as the attention floats away, some times people forget that you still struggle with it. I’m not complaining about it not being a every day, full day awareness deal. That would be too much.
So it’s a bit weird. I watch other illnesses step into the spotlight of their awareness campaigns. And I wonder if they also don’t go through this weird moment.
So if you should notice me still hobbling or hiding from the sun, don’t worry, it’s lupus. Just because the awareness spotlight will fade away, except for those who continue to draw attention and advocate around the illness, lupus and all the oddities that come with it, are still ever present with me.
Now and then I will meet someone who is doing something that they love so much, the person’s passion becomes an inspiration. Today, while having labs after labs drawn, I had a lovely visit with a gentleman who was also getting draws. We talked about what we did, what types of tests we were having and so on. As he talked about his job, his entire face lit up and his energy was incredible. I wish I could have bottled that all up to give to him for those days when energy is flagging and he isn’t feeling so brilliant.
He’s a librarian and as he talked about books and introducing people to new ideas and worlds I was just lost in his passion. The fact he wasn’t letting his debilitating chronic illness get in the way of pursing his passion and now working in that field was just amazing.
I sort of admired him being able to have his first passion. Although if I’m honest, I ultimately had mine too, which was school. The career change just meant more school!
All too often when I am talking other lupus patients, I discover that they have become so lost in all the medical appointments and tests, plus the side effects of medication, that they kind of give up on their passions and interests. I get it. I really do. It’s hard to focus on stuff when you feel like death twice warmed over after having been hit by a bus.
But if you can still find things to be passionate about, things that interest you, you can go from going through the motions of life while being focused on your illness to living life. Sure it’s in bits and spurts, but it’s incredible all the same. Now if only we can bottle this stuff up for the days when it’s a bit harder to finder passion or energy.