Posts Tagged With: Lupus

The Scream that isn’t heard – Lupus

Have you ever screamed so loud and high that no sound escapes your mouth?

This has been my reality for years. Pain in muscles and joints, pain in my kidneys, fatigue so extreme that I fight to stay awake and even sleeping for hours doesn’t make it go away. I don’t think anyone really understands what it’s like living with lupus, so I’ll try to explain one last time in hopes someone will listen.

I’m so tired right now, so stretched to my limits in a way that makes me not want to fight anymore. I’ve tried to ask for help, tried to break down everything to make it easier. They’ll tell me to just be positive. They look at me and think, she’s just depressed. And I try to tell them I need rest and help and medical care, but no one is listening.

So then, I want to stop talking. I want to curl into a ball of nothingness and waste away because I’m so tired of talking with no one listening.

This isn’t about looking at the brighter side. And I can’t even begin to fucking tell you how tired I am of hearing that. How unheard I feel everytime someone says it. I spent most of my life looking for every shred of hope in impossible situations. And I’m especially good at find it, especially good at flipping a situation on its head and pulling hope out of the ass end of nowhere, so this isn’t that.

This is waking every single day to joint pain that makes me fall to my knees. It’s muscle pain so severe I can’t lift our four year old most days. It’s fatigue so intense I find every way, including pinching myself and unwise amounts of caffeine, to keep my eyes open.

They think because I have good moments, because I have spurts of determination, because I can smile sometimes and make light and jokes that nothing is really wrong. They think if I just changed the way I look at things that magically I’ll get better, but I won’t and I don’t… and no one understands.

I think often they feel like I’m being difficult, that I’m just depressed, and eventually it’ll pass, but it doesn’t because it won’t because I have lupus. I have an illness that treats my entire body as an enemy, and then attacks it. Warm sunny days won’t make this go away because I won’t be able to stay out in them for long without extreme measures to coat and cover myself. This isn’t about vitamin D deficiencies, although I probably need some.

It’s about lupus, and the fact that I’m done talking to people who are simply waiting for a chance to respond with self-help mantras because they don’t know how to listen or simply don’t want to acknowledge that anything is wrong.

If you’re in any way interested in finding out more check out the video.

Categories: Drive by life | Tags: | 4 Comments

The “Lack of Backbone” Club & Why I’m turning in my Card

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I’ve written about self worth in some depth, both in my novels and blog posts. While this has been a very long journey, recently something came up that made me see how far I’ve yet to go.

Lupus, in spiritual terms, is a result of giving up, of the preference to die rather than stand up for one’s self. Ouch.

That’s me. The woman in the corner who makes a lot of noise sometimes, but that’s a distraction, something to draw attention while I run away. You see, I’ve never been good at standing up for myself or what I want. In fact, I’m actually convinced it’s selfish, and that I’m stealing away someone else’s joy by sticking up for what I want and my boundaries. Yeah, we’re sicker than we think sometimes.

For all my clamouring about finding your value, I haven’t been able to draw a line in the sand… ever. My course instead has been to walk away. Oh hell, I freaking run at mach speeds.

Now my lupus may or may not have resulted from this lack of backbone, but every time I’m confronted with a conflict I will err on the side of doing what’s right for others. I get stressed by this internal moral dilemma to the point of sickness.


I’m living in a beautiful house on a hundred acre farm. The plumbing upstairs doesn’t work, the toilets function properly about half the time, a few windows are broken, the front door doesn’t stay closed or lock, there’s mold in the basement, the fuse box pops regularly, there are holes in two of the bedroom ceilings, and we can only effectively heat the kitchen and family room during the winter. The other rooms are ice cold unless we use electric heaters, which result in $500 – $600 electric bills.

Every time we have a major problem — the sewage breaking or other such issue — I’m terrified to call the landlord. Last time I did he threatened to evict us and told me to go to hell. He did, however, eventually send someone over to fix it. So there’s that.

My girlfriend and I don’t want to move our three munchkins out of another school district, and with the extortion rent prices in Jefferson county, our choices if this plan doesn’t work out are limited. I can’t spend another winter in a house that can’t be properly heated. This past winter had me in bed for nearly three months. We can’t afford that happening again.

I recently came up with the crazy plan of putting two years of the rent money into fixing these problems, then signing a ten year lease at a higher rate. I figure he’ll get his money back in the repairs and the higher rent over time. Let me point out that this guy is a multimillionaire with hundreds of properties, many in the same condition, some not even able to be inhabited. Having said that, it’s still a business for him, so I get the need to make money from his properties.

So, I brought this plan to the landlord. When he started becoming difficult, I said, “Hey, if this isn’t going to work, then we’ll find another place.”

“Wait, that was my initial reaction,” he responded.

But that was also the end of the discussion. I haven’t heard from him in over a month, though he’s gone around and questioned my ability and honor to mutual friends.

Here’s the moment I should go and confront him. I should stand in his office and press until I get an answer, but…

It has caused so much stress that I’m head-deep in another flare-up. My joints throb, my muscles ache, I’m coughing up fluid again, and my chest is so tight, due to swollen tissue around my lungs, that it’s difficult to breath.

So my fellow hippie dippie spiritualists may not be far off. In fact, just writing this makes me feel better. At least, a little better.

Bottom line, whenever I’m confronted with issues like these my mind instantly thinks… “It’s not fair to ask him to fix these things” and “What a selfish bitch I am for even considering it” and “Maybe I can fix the house and pay rent and electric, so he’s not inconvenienced.”

I consider every possible way to make it easier on other people while piling a mountain of expectation, responsibility, stress, and work on my shoulders.

The world is about to make an incredible shift. Everyone, even the least connected person, feels the approaching change, and I don’t want to be stuck in these old patterns when it happens. I want to stand up for the things I believe in and what’s right for me without the whole martyr thing going on. ‘Cause yeah, I’ve done that more than once in my life, and it’s getting a little cliche.

Will I have the guts to stand up to him or anyone else?

Maybe… maybe not, but I’m going to try. It’s the only thing I can think to do because what I’ve done isn’t working, and I don’t want to be sick anymore.


Categories: Drive by life | Tags: , , , , , | 3 Comments

Update: Living with Lupus, Publishing, and what life looks like when I live it


Winter has been tough on everyone. Just ask the guy next to you. I’m certain he has more than one complaint – weather, money, illness. We’ve all been battered, and the massive shift in universal energy is throwing all kinds of crap in our face, but this isn’t a bad thing.

We all have illusions to break and walls to break down. This time has been good for that at least.

For several years my body progressively became more difficult to manage. Pain, constant pain I suffered through in silence, racked my joints and muscles, the winter being a particularly difficult time. But now I have an answer.

Systemic Lupus. Yay me! But not really.

The diagnosis came barrelling in with a lovely expiration date. That’s right, the docs gave my one remaining kidney 8-10 years at best. To make this a little more OMG, they said I wasn’t a candidate for a transplant. Needless to say I was shell shocked. I’ve since found other, less cryptic doctors, who have given me hope. Yes, hope! Combined with a steady ingestion of Prednisone, I’m feeling much better.

The lovely addition of two beautiful children and one of my best friends in the world to this too empty house has given us all a renewed sense of peace and joy. Little things, so very small, have been flowing together to ease the stress and inspire us all to love and support one another. For that I am eternally grateful.

Thank you, Universe, for having my back.

Next in line is publishing. Last month I pushed through a flare-up to put No Name Lane: Diary of an Angel up on Amazon Kindle. It’s a journey, part fiction, part personal, but all about breaking away the thought processes that keep us from joy. With any luck it’ll add a little more light into the universe, and we could all use more of that right now.

00 No Name Lane

To end this rather short update, I am coming back. Just need a little time to settle into this new joy. When someone tells you life comes with a time limit, it puts a lot of things in perspective. And I didn’t realize how much of life I was missing by wallowing in a pool of stress and obligations. Let’s face it, we’re gonna have bills and homes to care for and kids to manage. But those things don’t have to be a noose. We know they’re a part of being on this planet, so why not shrug, smile, and chase a three year old around a living room that’s covered with toys and blankets.

Those are the moments worth living. If we don’t truly reach out and cherish the people around us, then we’re facing this all alone. In the long history of our world, man has always banded together to share resources and support one another. It’s only been in the last several hundred years that we’ve broken away for it, and a progressive steam of hopelessness and loneliness followed.  Why we screwed with a good thing is beyond me, but I’m gathering a tribe, a group of incredible people for mutual love and support. Somewhere in there we’ll find a hell of a lot of joy as well.

To top it all off, you’re part of it. Yes, YOU! Why? Because I’ve seen your heart, the joy and pain, and no one should have to live either alone because, like I told a little seven year old the other day, we’re better together. Yes, I went Jack Johnson on you. ~winky smile~

Love you bunches, and look forward to talking again soon. Mwahhhh!

Categories: allowing the positive, angels on earth, breaking illusions, children, Choice, choosing faith, love, separation and society, spirituality, the universes we create | Tags: , , , | 8 Comments

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