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.
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!
It was a soup day of sorts. Cool, damp weather had come back and I wanted soup. I was also not in the position to spend a ton of time in the kitchen. I was hopeful I could spend some time in the kitchen but the weather, lupus and lack of sleep decided that this wasn’t really going to happen.
A short cut could be the slow cooker, but the prep was too much for my hands. A can of soup? Sure I suppose, but not really what I was looking for.
Thankfully a friend stopped by with exactly the thing I wanted most, homemade soup. Delicious, tasty soup. Soup is a bit like a hug from the inside out. And what’s better than a hug from a dear friend who took the time to make soup and share it with me?
So in the end I got what I wanted, but more than that. I got the most amazing gift, the touch of a hug when I didn’t realize I needed it and yet was exactly what I needed! To me that is the most perfect ingredient to any course of a meal because nothing tastes as delicious as love.
I’ve never felt shame regarding my lupus. Although I do understand how someone might feel ashamed of having lupus. Not that there is any reasons to be ashamed of having lupus, any chronic illnesses or any invisible illness.
You might wonder why someone would feel shame for having an illness. In and of itself it isn’t the illness that brings the shame usually. Instead the shame comes from watching others do what you no longer can while you are in a flare. It may be the amount you sleep or even how your appearance has changed. It could be the brain fog that makes you feel ashamed. Ashamed that you can’t remember things you really should.
If you require help, special consideration or such it is easy to feel shame. Especially if your lupus isn’t all that visible. For example say you need parking accommodations, not because you are in a wheelchair, but because you cannot walk far. So you get your parking placard, screw up your courage so you use it and park in a designated area only to have people stare at you.
The list goes on. And you really don’t need to feel shame for finding ways to make your life easier. Nor should you feel ashamed for getting back some of your quality of life. After all, isn’t living with a chronic illness like lupus more than enough without shame added to the mix?