Today I learned how much I rely on my eyesight. I had assumed I would know my way around my house, I mean I can find my way through it on a dark night. So why did I struggle trying to find my way through my house on a sunshine filled day?
Well for starters despite the sunshine streaming into my house, it could have pitch black. You see at my eye exam the lovely optometrist ran some tests which required all sorts of amazing eye drops. And those eye drops were designed for specific tests, not for carrying out daily tasks in bright light.
Some how among the eye drops going in (not a pleasant experience for me), the side effects of the drops, the tests and of course my stress I managed to work myself into a state of being unable to not only see, but also make sense out of where I was.
They had warned me, the test would render me unable to see in bright light or look at backlit things such as my electronic devices for a few hours. I was prepared for that and even had lovely dark glasses with me.
What I wasn’t prepared for was how my fear and stress would alter my rational mind to the point I couldn’t find my way through my own house. And while I wait for the rests, I’m sure the stress, anxiety and fear will continue to alter my rational thought process. But I am also sure I can find a way to occupy some of my thoughts for some of the time.
Until the results come in!
The problem with lies is that hey eventually collapse under their own weigh. Or they unravel in the most spectacular way. It’s easier, in life, if you just tell the truth; honesty is the best policy. And I know this, yet I lie.
I have had lies collapse under their own weight in the most horrific ways. And I’ve had them unravel like a poorly sewn hem on a skirt. Again in the most spectacular ways.
One would think after having dreadful experiences one would avoid doing the very thing that created the experience in the first place. Or so one would think. Apparently that one isn’t me.
While at a doctor’s appointment, one in which I was reassuring my doctor I felt perfectly fine (let’s face it with lupus perfectly fine is in degrees) my eyesight in one eye went all wavy and my eye started watering uncontrollably. Apparently other than my lupus flush I went entirely pale. And I ceased to make sense while speaking. But everything is fine right?
Needless to say my doctor didn’t listen to the whole perfectly fine bit I lied about. And now I have more tests for what is going on. The sad fact is the eye watering thing has been on and off for a bit, I chose not to share that with anyone. I haven’t had the speech issue before . I may have had the wavy eyesight issues temporarily before (yeah I know open and honest).
Once we’ve unraveled my health issues and if they are lupus related, I hope to unravel why I continue to deny how I’m really managing with my disease. I know part of my issue is not wanting to burden anyone with my health issues. I also know to a degree I don’t want to deal with my health all the time. But why on earth do I do this with my medical team? Yeah I have to unravel this.
The four-footed one decided she shouldn’t have to get out of bed this morning. I get it. Other than food, a walk and play time she has nothing pressing to do. And let’s face it, those of use who have more added to our lives also have moments where we just want to stay in bed.
Unfortunately for the four-footed one she had to get up and get going because her humans needed to get going. It didn’t mean she had to like it, it didn’t mean she couldn’t protest, but it did mean she had to get started with her morning.
Normally the four-footed one wakes up happy and ready to start her day so naturally we assume something was a little off for her. Turns out she had no desire to walk through horrible weather. It was blustery and chilly early in the morning. Ah yes, nice warm bed versus cold wind in your face. What would you decide?!
To be fair, Beloved took her for a walk this morning because he wind and cold was too much for my own body this morning. I had warned Beloved, long before the weather people did that the weather was changing. He doubted me. But when he came back from his walk he said he didn’t know why he doubted me.
Of course me handing him a warm coffee may have had something to do with that too! And the four-footed one spent the afternoon resting on the bed, beside me. Because by noon I could no longer handle the over-the-counter pain meds for my pain. And I was tired. Chronic pain can be exhausting and tiring. And if a cute four-footed creature wants to curl up beside you, all the bettering!
I’m nota huge fan of public transportation. I’m not against it as per say, anc I use it now and then. I’m just not a fan of it. I’m not a fan because I cannot control what people do on public transportation. Such as spreading germs, bodily fluids and such.
Today I had to take public transpiration. The city bus. This is a nightmare of sorts for me. Mostly because the medication I must take lowers my immune system. So I shudder when I have to take the bus. And this morning I had to hop on the bus to get to an appointment, so I girded my loins (well okay I took a deep breath and made sure I had hand sanitizer) and headed off to the bus station.
While on the bus I witnessed a person eating a waffle he had pulled out of his pocket. It looked like a microwaved Ego Waffle. He also pulled out a small container of what appeared to be syrup out of his pocket. The container was at least sealed. The waffle wasn’t even wrapped in anything. So already I’m a bit grossed out by this, but when the person began to eat his waffle, he would dip it in the container, take a bite and then wave the rest of the waffle around.
Now stop and think about this for a minute. That waffle, no matter how carefully you bite, now has your saliva on it. And you are throwing that around in the air of the bus. It’s like spitting on people.
Gross enough now doubt, but also on my bus ride was a young mother who did a full on dirty diaper change on a bus seat. That’s umm exposing us to fecal matter. Fecal matter which in this case hit the floor. It could have just as easily hit the seat where some poor person may have sat in it. At any rate there is now fecal matter being spread through the bus. Fecal matter that someone has to clean up.
I don’t even want to think about what is on the seats, the hand holds or the buzzers to ask for a stop. So yes, I’m not a fan of public transportation. Or maybe I just need my own bubble!
I finally understand, I mean really understand, why when I have my blood drawn these days they call them labs. It isn’t because they will be running tests on my blood. Nor because they will be peering into my blood to look at the circus show that happens with my blood cells, although that does seem a bit of a laboratory thing doesn’t it?
You see friends the truth is it is the shape I’m in when I go to have my blood drawn. Pretty much a Frankenstein-type shuffling being enters the room with the required paperwork. And that individual is me, although I hardly recognize it at the time.
When they take the blood, it isn’t just a tiny bit. I’m pretty certain they drain my body and refill it with some odd fluid exchange that allows me to remain upright. I know, you find it hard to believe, but consider this. When you go to donate your blood at the end of the ordeal they ensure you have cookies and juice. When I have blood draws because of lupus they don’t offer me cookies or juice despite the fact they’ve removed 15-17 vials of blood.
So the place that takes my blood is a laboratory and I am in fact a type of monster. There is no other way to explain it. Honestly, would it hurt them to give me a cookie, or at least a sticker for all the blood they take?
I still remember, clearly, when I deceived my diagnosis of lupus. The sun was out, birds were flying outside my doctor’s office and my doctor’s face bore the hallmarks of delivering unpleasant news.
He told me he was sorry to have to tell me I had lupus. He was quick to assure me it wasn’t a death sentence, but was going to change my life going forward. He also said it wouldn’t necessarily be easy, but it wouldn’t always be hard. He spelled out how the disease can affect the body and was very clear that remission could happen.
Even with my own unease at this, I realized that this wasn’t something I would face alone. It struck me then, as it does now, that there is the word “us” in lupus. Us, as in a team, a group or not alone.
There is something comforting in knowing that you never face something completely alone. Even when you think you just want to handle it all on your own.
Over the years doctors have come and gone in my life. Some have stayed, the ones who are part of my team. My lupus team. The ones who remind me of the “us” in lupus. The ones who assure me I’m not alone.
There are other people who fill in the “us” too. Friends, loved ones and support people. So each of us who have lupus need to remember there is an “us”, even in the darkest of moments. We are never alone. Because with lupus there is always an “us”. You just have to look for it!