Thursday, December 29, 2016

Last words

What will your last words to me be,
or mine to you?
Will they be spoken in anger or sorrow,
in mirth or in jest?
Will they bite like the cold,
or sting like sands on a bitter wind?
Will they provide comfort
or nourish the soul?
Can we guarantee
what they will be?
Maybe there's a way.
If all our words are kind,
yours and mine.
Our last words, then,
should follow suit
and rhyme.
In time. 

Thursday, December 8, 2016

How do I really make others feel?

No idea! Just rolling my eyes at myself.
Lately, I've been doing a lot of thinking about how my words and actions speak to others. Sometimes I'm not real proud of myself in this area. My intentions are good. It's just that sometimes other people frustrate me to the point where I say and do some things that aren't very nice.

Now, I'm not justifying my behavior. Far from it. I'd really like to stop. I wish I had my Dad's self control when it comes to things like people disappointing me. Unfortunately, I do not. Nope. When people let me down over and over, I find it nearly impossible to hold my tongue and temper.

I suppose I could look at it as self defense, but I don't think that way. Nope. It's one of my worst character flaws and one that I am working on.

I also have this thing where taking about my frustrations helps. Unfortunately, that talk sometimes comes out sharp and gossipy. I hate that about myself.

And then, of course, there is another side. It's just way too easy to forgive myself because after all, there is good reason for me to be upset under certain circumstances with repeat offenders, right?

People who continually show a lack of consideration or those who just constantly ask for more than I have to give may be getting exactly what they deserve but I don't feel good about it.

Instead, I feel like I should be giving what I would like to receive, regardless of anyone else's behavior.

So how do I really make others feel? Is my help/advice, actually helpful or rude and intrusive? Sometimes I'm not so sure, even though I mean well. And I wonder, do they even realize why I'm so very frustrated sometimes?

Do they see how they make me feel? Or have I just become the “Big Bad Wolf” of this scenario? I certainly hope not but if I had to hazard a guess, I'm pretty sure that's how some people see me, despite the fact that they may have “started it” by being nonchalant about my feelings and/or taking advantage of my generosity.

Relationships with other humans sure are complex, aren't they? Especially for those of us who lack social skills and have limitations that keep us from attaining them. But I'm not giving up. Nope. I will overcome this habit of holding in resentments until they blow up in the faces of those I love.

Meanwhile, I hope that I make the people in my life feel loved and welcome at least 75% of the time. And as for those bad days, I sincerely apologize. Geez! I'm such a hard case! Such a human! Who knew?

Surviving the reign of social media

I'm serious, you guys. When I was first introduced to the wonderful world of the web, it was all fun and games. Well, that mixed with a bit of cursing at the learning curve. But now? Well now, if I'm on there too long, which could mean anywhere from10 minutes to 2 hours, it honestly makes me a bit nauseous.

In particular, I'm so tired of being inundated with commercialism on social media. I mean, I get that some web promotion is necessary these days. But must everyone be trying to sell something (even if it's only a plea for self-affirmation?) every second of every day?

And point proving has become an epidemic. Worse than that, people actually brag about showing others up and making them feel bad.

And does this sound familiar?

*If you scroll past this, you're heartless.
*Pass this on to 25 friends (in other words, annoy the heck out of them too.)
*Say Merry Christmas/Don't say Merry Christmas/Keep Christ in Christmas
*Wear this/Do this/Say that
*Share this to prove you're my friend

And on and on.

No wonder we're all so stressed out.

When did this all become normal and/or acceptable?
Also, when did we start thinking it was OK to spam, troll or bite the heads off of our friends for entertainment/profit or personal satisfaction/affirmation?

What ever happened to placing value on common decency, dignity and grace?

And what's worse?

I'm guilty of some of it myself.

Which is why you don't see much of me on social media any more. It's getting to a point where I'm just as nauseated by my own online behavior as I am the behavior of others. I'm now questioning my decision to participate in social media. At least the way the tone of it runs now, anyway. It just encourages such a warped mindset.

The reign of social media is changing us all. It's certainly nice to get to know people you wouldn't have met otherwise or keep in touch with/find old friends. Beyond that, though, it appears to have become a big bitch session.

I think I'll just stick to the friendly socialization part of social media from now on and cut myself off if things get ugly. I can auto-post my articles directly from my blogs anyway.

And by the way, I've never expected anyone to feel obligated to read my blogs. I just put them out there in case there's interest. I mean, sure, that's how I make money, from page views. But honestly, I want people to read my writing out of enjoyment, not because they feel guilty if they don't.

Oh, and if I feel like venting, I always have this Rants and Raves blog. It's better to put it here since it's not directed at anyone on a personal level. Therefore, there's not such a sting involved as there is in personal social media conversation.

So, that's how I'm dealing with surviving the reign of social media. How about you?

Wednesday, December 7, 2016

When someone asks me my symptoms and other negative babble

Ha! I swear that it's no wonder people don't think those with chronic illness are actually sick. Because, quite often, when I'm asked what my symptoms are, what they get in response is an open mouthed, blank, puzzled stare, as if I don't even know. When in actuality, what I'm thinking is, “Ummm where do I begin?” LOL

The list of symptoms associated with Lupus and Rheumatoid that I have experienced is extremely long. And honestly, you guys, I'm just as tired of talking about it as I am of going through it. I'm not really wanting to dwell on my pain and suffering every time I meet someone new. I'd rather talk about anything but my illness. Anything at all.

So.... symptoms. Well, I guess my answer should be, “You name it, Lupus and Rheumatoid will throw it at you at one point or another.” You know how comedians will poke fun at warning labels on medicine bottles? Well, that's exactly how a run down of chronic illness symptoms reads.

Severe pain, fever, chills, nausea, vomiting, severe diarrhea, limited mobility, permanent or temporary paralysis, acid reflux, lung infections, organ damage, kidney failure, nerve issues, tissue damage, joint issues, swelling, inflammation, low immunity, overactive immunity and on and on. The list never really ends.

I recently contracted Lupus related pneumonia. And guess what? Due to the type of Lupus I have, I can't get any preventative immunization that goes into muscle. So, I was both high risk and low protection. Great combination. Which is why I ended up in the ER 4 days before my son's wedding.

Sweeeet, right?

And the pain! You have no idea!

Have you ever had pain so bad that you actually cried? Real, hard tears, I mean. Not just “Oh, wow, that really hurts” pain. I'm talking about gut wrenching sobs. Pleas for mercy. Curling up in a ball, wishing for death to swoop you up in it's arms, knock you out and drag you away. Or worse, those silent tears in the middle of the night, shaking and quaking and trying like holy hell not to wake anyone up so they won't have to suffer with you? What if that was your daily reality? Well, there you go. That's Lupus and Rheumatoid.

Thank goodness for non-flare days!

Problem is, though, even when you do get a few days of relief, you know it will always be back. You just don't know when or how it will present itself. 

So, you can't work, even if you want to. And believe me, I want to. If you work for a living, you might think of staying home all day, every day as the best thing that could possibly happen to you. It's not. It sucks big time. Oh, the first couple weeks are heaven. Maybe even the first month. But after that, it's just a never-ending sameness, no matter how many ways you find to occupy your time.

It's also pretty hard to find ways to occupy yourself when your income is zero, due to illness. Even the simplest hobbies cost money, you know? Now, I'm lucky to have people in my life who keep me in art supplies and that type of thing. The boyfriend gets it since he's the one who gets to listen to me crying, night after night. So, he's kind enough to replace broken computers and so I can keep writing. In fact, he supports me completely and literally these days.

And you know what? I'm no gold digger, so that really bothers me. I was always a self sufficient individual until Lupus and Rheumatoid reared their ugly heads. Heck, I even kept working long after it was healthy for me to do so. I feel like that's true of most people with chronic illness. I've even considered going back to work now that I've been officially told not to. And on more than one occasion. That's how much it bothers me.

Anyway, I carry on. And I do manage to stay positive, even though this little rant may not be. I have hobbies. I paint. I write. I take photos. I make the house pretty. It doesn't stay that way long.... LOL But so what? I try. I spend time with the grand-kids. The boyfriend takes me on road trips. He drives most of the time since well, you know. Rheumatoid and those long drives equals ouch! That ain't happening.

And of course, I educate people a bit about chronic illness with my blogs. It really makes me happy to help people, you know?

But please don't ask my my symptoms. It would literally take days to answer you. Plus, it would remind me of what I'd rather forget. Aside from the fact that I write about it a lot, in "real" life, I don't really like being defined by my illness. I don't want to be that person people mention to other people with chronic illness. Oh, you know, Jaipi has Lupus too. Maybe you two can get together and talk about it.

Ummmm no. We don't want to talk about it. We want to forget it.

If only it would let us.