I spent the better part of an hour in tears today. It wasn’t necessary as far as I was concerned, but then I’m not the medical expert so maybe it was necessary. I mean perhaps you are supposed to ram, jab and jiggle a needle into someone’s ruined veins because you know something about the port that I don’t.
Two nurses decided to play pin the IV as many times as it takes to get a vein. Mine are ruined from IVs, medication and such. I have notes all over my chart indicating that they are to use the port and if that isn’t feasible, to call a particular Doctor. But these two did not heed the notes, nor did they call the doctor.
Instead the used me as a voodoo doll, or so it seemed. And told me I was surely not in that much pain, as if to say shut up and let us get on with getting on. I know there are rules as to how many times they can try this little game at one sitting and so I raised that point. Still they ignored me, so determined were they. They didn’t notice the doctor walk up to where we were. Frankly I barely noticed hm through my tears and I don’t normally cry in public.
He ordered my treatment cancelled for the day, regardless of whether I needed it or not, citing trauma. He sent the nurses away and then he told me there wasn’t enough time left for treatment today. He asked if I told them about the notes and the port. He frowned as he looked at the state of me and then he sent me home, telling me to come back in a few days.
So home I went and cried some more. I cried over the pain and carelessness. I cried over not being heard or considered as a human in this game between the nurses. And I cried because I was at the point where the tears couldn’t be held back. The four-footed one stayed near by, just in case and beloved settled in with pillows and ice packs and the ever-present offer for tea. Mostly I cried because some days lupus seems so large and overwhelming. I seem so helpless, helplessly lost and unable to function how I used to.
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.
I’ve never been fully successful in matching the colors of lupus with my outfits. Part of the issue is that I may start the day off without a rash on my face, but by the end the day it may be fiercely showing. Red isn’t really my color.
And for some reason on any given day I will be sporting bruises in all shades and hugged from deep fresh purple to charming greenish-yellow as it is fading away. And there is really no way to accommodate all those colors on one canvas. Not in a tasteful way, or it in a tasteful way that I know of.
see when I first discovered I had lupus, I was prepared for some health issues. I just wasn’t prepared for being a canvas-covered in so many hues all at the same time. Heck my personality isn’t even all that colorful. So I’ve had to learn to try and take some of those colors, hide others and frankly just get comfortable with things.
And really, that’s not a bad thing to learn, getting comfortable with yourself, in your own skin. Lupus has pretty much brought that lesson home efficiently and succinctly. Most of the hiding of the colors is to be comfortable around others, to not cause them to feel uncomfortable.
I was going to take the four-footed one for a fun adventure today. I was on track for making this happen, until I actually tried to get out of bed. The struggle to get out of bed was a warning sign for how the rest of the day would go. And a fun adventure was not in the plans any more.
Thankfully the four-footed one didn’t care if we stayed home or went out onto an adventure. The four-footed one just cares that she gets attention, love, treats and cuddles. Oh and her every whim given into as it comes to her attention. If you really want to impress her, give into her whims before she even knows that it’s her whim!
So we spent the day quietly, doing less active things, but still having fun. Between her and lessons from lupus, I have come to appreciate the essence of the things rather than the big ceremonies. The four-footed one doesn’t care if it’s a special day, she makes the day special all on her own. Lupus has, at times, a way of getting in the way of celebrations, plans and such. So you learn to find other ways to celebrate, or have plans that are flexible enough. For example, lupus may not mean not going out to a park, instead it means ensuring you have shade, water and places to rest.
It’s just a matter of how you look at it!
A day at the beach always seemed nice. Not that I was one to have to go into the water as per say, but a chance to simply relax, read a book and basically have no guilt around what I was doing seemed ideal.
A day at the beach with lupus, well let’s just say it’s not the same thing. I never anticipated having to be so on top of sun screen and shade areas. If it’s too warm, I may have other issues. My beach bag went from being easy to manage into something that resembles a bag which can hold everything and the kitchen sink.
Who wants to carry a heavy bag around loaded with sun screen, water, an umbrella of sorts and a wrap, long-sleeved shirt and pants for additional sun protection. No one should feel that a trip to the beach is practice for being a pack mule. Oh wait. Maybe if I had a pack mule, except would that be fair to the mule?
So these days I don’t do days at the beach. Instead I find a nice area and set up my reading or relaxation and don’t care what others think. Nor do I have guilt about doing this. After all they are all at the beach and I need shade, plus some nice peace and quiet so I guess it all works out. You go to the beach and I will head off just over here and we will both have a great time at the same time, just not together!
My mother swore that getting a good drink of water would always help change the way you see something. I recall being horribly upset over something when I was young, and my mother offered me a glass of water to help me see it wasn’t the end of the world.
Beloved offers tea in place of water, which I guess isn’t that far off, given that tea is nearly boiled water and dead leaves. Or so I like to tell him. Mostly because I like to watch his face turn brilliant red as he listens to me say horrible things about the sacred tea.
I’ve also come to realize that one of my specialist’s has now started employ this little trick when he has to give less than pleasant news. The first time he tried it with me, he started with the gentle suggestion that I needed more hydration. Really he was stalling for time before telling me what I already knew. I’ve lived with lupus longer than he has been treating my lupus so I have a pretty good idea when things aren’t going in the right direction. I also know that water won’t help.
Water may “calm” or “distract” me temporarily, but it doesn’t fix the issue at hand. If nothing else, lupus has taught me that I need to deal with the problem head on, not wait it out or hide from it and pretend it will go away because lupus doesn’t go away. It just gets stronger and stronger.
Sure hydration and water intake is important, more so for people with lupus and certain medications. But I’ve also come to learn that lupus knows how to swim so I can’t avoid it forever.
When my doctor sat me down and told me I had lupus, in a clinical way, I wish he had taken the time to explain to me how my medical appointments would change. I mean I knew there would be more and could involve a variety of specialists (frankly I feel a bit like a hoarder with the number of specialists I currently have). But I never anticipated that the tone of these appointments would change either.
Suddenly everything was about the progress of the disease or the latest blood results. It was as if I ceased to be a person and was now having an almost out-of-body experience when it came to my medical appointments. I trusted my doctors to know what was wrong and how best to get things on the right track again.
But more and more I realized I suddenly lost my voice in decisions and I didn’t like it. So I started to read up on the illness, I read medical books and learned the language. I had determined that while I couldn’t get a medical degree, I could certainly earn an honorary one with this illness. And if I was going to have an honorary one, I should know the language and be able to hold my own to some regard. Plus I wanted to be making informed decisions, not just going with what a doctor thought was best.
So without being told, I found my way into being my own advocate. After all who knows me better, knows my wishes and my body better than I do? No one. And just because a doctor is partial to one way of having things, it doesn’t mean I am. Besides none of my doctors were stuck living with the ramifications of the illness the way I was.
Being my own advocate took me out of being a “victim” of the illness and gave me power to be actively involved in my well-being and treatment. And more than that, it gave me back my voice and my power. Sure lupus wins now and then, but I’m not just along for the ride any more. I am looking at the map and deciding which route to take. If my doctor doesn’t agree, and I can’t seem to understand his/her strong push for a specific course of treatment without taking into account my opinions, the doctor can be removed and I can find another one. I don’t have the energy to fight both lupus and a medical professional.