I’ve been around the block a bit when it comes to knowing what I should and should not do because of my lupus. (Note: the lower case “l”) For over a decade, I have managed my living with illness fairly well and have been very lucky so far. I have no complaints that are worthy of the air time.
I live with lupus. I work with and learn from people who are living with lupus or other illnesses that often share similar medications, experiences, doctors, and challenges. I have a library of books, hundreds of files, materials from trainings and conferences, have a multitude of websites listed in my favorites, have worked directly with patients and health professionals, and have participated (at one time or another) in more than 12 social networking sites. I have lived and breathed lupus and illness for many years, all the while discovering that there is always more to learn. One would think that I would be bursting at the seams with some common ‘lupus’ sense. Apparently not.
Do any of you remember, when you were kids, the Highlights® Magazine you could find at the doctor or dentist office? You may see them now, if you’re taking your own kids to their appointments. In this magazine (and now online) , there is an illustrated picture where you are instructed to find a list of hidden items. Some are tough to find, but others are right out in the open, thankfully. I remember being pretty frustrated when I could not finding certain items, only to realize I had been looking at it the whole time. This post, too, is about things that appear one way on the surface, but when you look more closely, you will see things aren’t as they should be.
On the surface, you might think that growing a garden and eating fresh vegetables are good things. You might also think that I always make the right choices, since I do health support services as a profession. If you look more closely, however, you will notice some big errors in judgment that I am ashamed to have made, both as that professional and as a lupus patient. At my age, and at this stage of the game, there are no excuses. I know that you may not see some of the things I am about to mention. This is where my personal accountability will come into play and I suspect there are many of you out there doing the same thing. Let’s just put it all on the table right now.
This picture shows me out there harvesting – at noon, when the sun is at its highest. I’m out there without sunscreen. I’m wearing a top that, quite frankly doesn’t cover enough of me in any way shape or form (I really need to either tone up or toss it out.) My mouth is usually wide open when I harvest the beans and peas, aggravating my symptoms similar to Sjogren’s. According so some nutritionists, I’m surrounded by tomatoes, that are considered to have inflammatory properties and may cause some people with lupus more trouble than they’re worth. Well, this person isn’t going without her tomatoes, otherwise her temper will show some inflammation. It is something to consider, though, when you are trying to gain some management in your flares.
This picture emphasizes what you don’t see. No hat to shade my face. No water bottle to stay hydrated. No one helping me do the work. No thermometer to show me that it was already in the 80’s. No time out break – I know it’s a small space, but you’d be surprised how long it takes to water and harvest this little patch! That leads me to my last point in this hidden picture that isn’t so hidden: I have no energy to keep standing, because the sun and heat are already getting to me.
The good thing about this goof up is that I can easily fix it. Not all things about lupus are that easy to remedy. I can get out there before 10 am or after 5 pm, when the sun begins to ease up. I can take a little shower caddy out there with me including a water bottle, sunscreen (to reapply when needed), a little thermometer to check the temp, a light-weight T-shirt to have in case I’m out there longer than I should be, and hard candy to keep my salivary glands active and mouth closed. I can get a hat that can hang around my neck to remind me to wear it. I can get a little stool to put out there when I get a little dizzy. I can ask my two daughters to take some time and help me, giving us a chance to be together and talk.
When we feel good, we forget. When we hurt, we remember and curse ourselves for forgetting.
These pictures show how I only have myself to blame when ( not if ) I feel like crap tomorrow. Even with all my experience, I still struggle to keep my lupus hidden. By bringing out my experience and knowledge about what I need to do doesn’t translate into being labeled as “sick” when I’m having good days. When I’m not ‘at work’, I still need to be willing to acknowledge my responsibilities to my health. Being able to be out there and by doing things right creates my chosen picture of health. That is what helps keep things in the right perspective and me still growing.
