A huge sigh filled the air. THe kind of sigh that was full of unsaid words, unmentioned worries and unresolved problems. It was, in fact, the kind of sigh Beloved has gotten rather good at doing. One might even call it second nature to him.
It had become the beginning of his conversations, the end of his discussions and the way he filled the silence. And he wasn’t even aware he was doing it.
Sadly, I was the reason for this sighing of his. It wasn’t intentional on my part, not in the least. It was, however, a side effect to me rushing headlong into my life with lupus while still having a career and such. This meant that at times I forgot to tell him things.
Fine, since we are al friends here, it meant occasionally missing an appointment or medication times. Which yes, I know, isn’t always the most responsible thing or ideal for my health. And this, of course, is the reason for the sighs.
And as the sigh filled the air I felt s though I had disappointed him. Even though this time there wasn’t any cause for him to do that. And so my impatience rose with him as well. I wanted him to just day what he needed to say.
So he moved into the conversation and all was well. Until the end, when he suggested perhaps a small nap might be in order. As he put it, you know a bit of rest with lupus wouldn’t be bad. It’s not that he was wrong, but good heavens. I wanted to sigh and tell him to leave it. I didn’t because sighing is his field of expertise. Mine seems to be not following rules and such.
I walked into my specialist’s office feeling like absolute garbage. I didn’t go into the office because I felt so awful, that was just an added benefit on this trip. I had gone in to go over lab results and discuss which way I was going in my “chose your own adventure” with lupus.
The fact I could walk in and when my specialist asked me how I was, and point to all the various pain points was an added bonus. He suggested I consider getting a massage for some of the pain. He said that my ears had fallen, and I was guarding myself far too much. A massage, he reasoned, might help raise my ears and put my body at ease.
Now in all truth, my ears hadn’t fallen. I was in pain. When I’m in pain, I pull my shoulders up and forward. I hunch over a bit. And frankly spending any amount of time in this position doesn’t help the pain. It may, in fact, increase the pain I feel.
Since he couldn’t a reason for not getting a massage, he called in one of his nurses and told her what he thought I needed. She in turn told me she was making arrangements for the massage with the therapist just down the hall. In other words, there was no way to avoid it.
So I went. And the therapist tried to massage out my painful muscles, but she couldn’t. Because I couldn’t relax. Because of the pain I was already in. So she opted to use a TENS machine to try to help the muscles relax. While I sat there with this lovely pit of electronic equipment pulsing my tight muscles, the therapist went to talk with the specialist.
When she came back, she told me that there wasn’t much more she could do at this time. She suggested Epsom salts in bath water to try to ease some of the pain.
This is not exactly the path I chose in my adventure with lupus, but sometimes you rely on a team member who may or may not be right. We will see where we go next!
Where has the day gone? I woke up, got ready for a coffee out with a friend I’ve not seen in a few years. I walks the four-footed one before the coffee, came home and did some light cleaning before doing some work to prepare for the next day. And suddenly it’s evening and I’m not exactly sure where the day actually went.
About the only other thing I can say that I did today was find a USB stick I had spent the last three days looking for. I mean full on panic ensued when I first realized it was missing. As I tried to sleep I would try to remember everything on the stick and panic that there was something highly confidential and I had lost it in a public place.
When I first realized it was missing, a few hours after having been out doing some shopping, I felt my heart start to flutter as it dropped into my stomach. It was too late at night to do anything so I vowed first thing the next day I’d go and see if it had been turned in. And I was fine with that.
Until I tried t sleep and suddenly thought I might have confidential information on it. At that point my heart started to race again and I found myself feeling very warm. Naturally I woke up with joint pain and swelling thanks to the stress I had put myself.
Beloved, in his practical way, said it was somewhere in the house and it would turn up when I needed it. And that’s sort of what happened. You see while getting my stuff moved into my smaller bag, I found it on the floor. It must have fallen off the table and gone behind where the bags were. It wasn’t a place I thought to look.
So I guess even thought I may not know where the day exactly went, it was a good and productive day.
This is not my favorite time of year. Inevitably Beloved will, in his well-meaning ways, insist that we go to some gathering or another. Where upon people will talk about work, friends and their children.
At some point in the conversation the question will arise about OUR children. In the past we have quickly said we didn’t have children and steered the conversation elsewhere with some rate of success. But in the more recent past we’ve come across very insistent people.
If we are lucky, someone in the group will be aware of my health issues, and gently mention something about it being sad that some people don’t have the health to have children. And that person will help guide things away from this discussion.
If we aren’t as lucky, Beloved or I will say something about being too busy or dedicated to our careers. And then we move along.
The truth is, I have known from a very young age that even if I had wanted children it was impossible. I was also diagnosed young enough with severe enough lupus re was no way I would ever want to risk passing this illness on to anyone. (Sure I know depending upon which study you look at the numbers vary widely, but even if it were just 1%, that would be too much for me.)
Beloved, on the other hand, did want children when he was younger. (This was before I knew him.) However it wasn’t meant to be and instead he got stuck into his career and then stuck with me. For him, being asked about children is a painful question and clearly not something he goes into. He would never dream of invading that personal space of anyone else and he struggle so or accept the at others don’t get why the question can been seen as rude, or hurtful.
I was radiant today. Truly honestly radiant. Beaming with a glow that isn’t natural. No I wasn’t wearing fancy makeup. Sure I was made up because for some reason while getting radiation one should be made up. At least to my way of thinking.
After the radiation, I needed to pick up a few wee items and off to home it was. Where I continued to be radiant, and red. Yep lupus rash in full force. And I am not sure if it’s a reaction to the radiation, stress from too many projects and not enough energy or something else.
A short walk, while I was still beaming with radiance, to get the four-footed one out and about was in order. Followed by much down time in the house. Because one doesn’t need to share one’s radiance completely. Especially not when one is feeling dreadful and exhausted.
When one has radiated to her fullest, it is okay to simply keep one’s glow to herself. In the house. While she rests. Because radiation can be, well, exhausting. And no, for the record I did not light up the house or the room with beaming light. Although my face felt like it was doing just that!
You’ve probably heard of fake news. And no doubt you’ve heard about imaginary friends. And you may even know someone who imagines all sorts of things, but it’s all in that person’s head. It certainly is understandable that of you don’t know about something, you may not believe it exists.
I understand all of this. I also understand it is impossible to know even everything or be open to accepting everything that is out there. However I struggled friends. I struggle with well-meaning people who on suggest if I just change my diet, do a particular work out, change how I think or take that one special ingredient my lupus will be cured.
If I could cure myself with any of those things, I’m pretty sure I would have done so already. I mean this isn’t exactly the life I envisioned. Not that I’m unhappy with my life, but I’d love to be pain-free, lupus flare free. I mean hey it would be great to not have a huge debate about going out if the sun is present. It would be nice to you know have a normal life.
However this is the life I have. And it’s a great life for the most part. But no, lupus doesn’t complete me. I am completed despite it. I am completed by friends and loved ones, by all I achieve and such. And if you don’t believe in invisible illnesses, that’s fine, it doesn’t make me less complete because you think my medical reality is fake.
It’s that a time of year again. The time of year where I need to find my gloves and warm socks. Sure the temperature is dropping outside, but never mind that, it’s the having to grab items out of coolers and freezers I’m more worried about this time of year!
One of the joys that comes with my personal version of lupus is something called Raynaud’s disease. This is a lovely bit of fun that allows my hands to become chameleons of sorts. Provided the background I need blend in with is either white, purple or red. Because Raynaud’s seems to let you experience the cold more greatly based on cold temperatures and stress.
So when it’s already cold outside, and I have to reach into a freezer or cooler for some of my groceries, it’s painful beyond belief. So I have special gloves just for grocery shopping. And warm socks for when I’m on hard wood floors on tiled flooring. And yes this is something I have to manage all year round, but as the temperatures drop, the impact of Raynaud’s seems to intensify.
Sure that may because I’m more aware of it, except it doesn’t explain why the pain is more intense during this time of year either when it comes to my Raynaud’s. Maybe it’s to keep my joint pain company!