About Me~, Uncategorized

A Whirl-wind of Thoughts~


Wow.This has been a crazy whirlwhind couple of months for me. Between new diagnoses of diseases , to new medications, new heart treatments, and some other really erratic things to deal with , it’s been kind of out of control. And I got to thinking about some things, that I thought would really help me, and I just kind of wondered if maybe it would help some of my other fellow lupies too. I know sometimes we are really grateful to have people to help us at all, so we don’t say things , lest we sound really ungrateful, like ” How DARE you fold and PUT AWAY my clothes!!” when that’s not what we mean at all!! 🙂 But, I AM KIND OF known as the girl with NO FILTER for her mouth , so I’m gonna give this a go 😉
I’ve been getting a lot of questions from my friends on my lupus page about family and family drama. Things like “How do you deal?” , and “What do you say to keep people from getting upset?”, “Well, I don’t know that I’m the best at it, but I’ll give it a go. Okay? Okay.

THINGS FOR THE FAMILY~ Strangers NOT to say:

1. How are you feeling today? ~ now honestly , I know that to the non-chronically ill, this seems like the first thing most people would want to hear right? But , seriously. We hear this ALL day EVERY day from EVERY FRICKIN PERSON EVERY-WHERE. The cash register lady “How are you feeling?” The neighbor, “How are you feeling today?” But, after a while, all we really want to hear is “Hello! It’s good to see you! (Undertone meaning, I’ll talk about my illness if I feel up to it today , thanks.)

2. When do you go to the doctor next? or What do the doctors say? ~ Well, the doctors say ALL kinds of things. I’ve got 4 at last count. So which doctor’s current opinion do you want? Do you want me to be BRUTALLY honest? DO you REALLY want to know what the doctors say? A better thing to say is ” I hope your next doctor’s visit goes well.”

3. Your face/hands/arms/legs etc. look really red , swollen and/or rashy. Is that a lupus thing. NAh. I just normally look like giant bloated crimson beached whale. A better thing to say in THIS particular situation is NOTHING , PEOPLE, ok? NOTHING.

4. When you see your friend and wonder what would be the best thing you could do for them in their painful situation? ASK. Do they WANT a phone call? ASK. Don’t be offended if they dont’, maybe they are too tired to even hold a conversation with you, it’s not personal. Do they WANT help with the house ? ASK? Don’t be offended if they don’t. The thing to remember about offering help is make sure that the reason you are asking is that the outcome is really benefitting the “SICK” person , and NOT yourself. Don’t ask to do something because later on it looks good on you and you can brag later about what a good deed YOU did.

5. The easiest thing you can do for a sick person that maybe you haven’t thought of , is DON’T HOVER!!, yes we are fragile, yes a lot of us are dying and need special treatmeant, but we WANT our families and friends to treat us as normally as possilbe. So please , please try to remember, that although, we are lupies and are sick we are just normal regular people too. We won’t break if you leave
us alone for five minutes, and sometimes we just need our own personal space to be the weird, wacky,and wonky people we are!

With ❤ 🙂 and as always (hugs)


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