Nobody Knows, Nobody Cares

snow covered benchI may sound pathetic in the title of this, but that’s not how I feel. I just think this is funny in a Saturn square Neptune, confused reality, way.

They replaced the windows in the front of my house today. I am super cold-sensitive with this autoimmune stuff. So I put on a coat and a scarf while they worked.

I wear a coat indoors all the time, these days. It doesn’t matter that it’s 72 degrees in the house, I’m cold and the best way to deal with it is to wear a down jacket. Er…if I turned up the heat to where I would be comfortable, my family will be melting in the heat.

So they replaced the windows. It wasn’t as bad as I thought it would be, though it was cold today. This is Colorado!

When they finished, one of the men asked me, “Would you like me to leave the window open?”

I looked at him in total confusion. “Well I’m wearing a coat…so probably not.”

He didn’t seem to register what I said.  “I closed the window. I guess you can open it if you like,” he said.


I opened my mouth to explain why I was wearing a coat. What would I say? I have Lupus? I have Raynaud’s and the blood shuts off in my fingertips?  It’s ridiculous. I smiled and thanked him for his work.

Later, I was talking to satori. “I realized there is no sense telling anyone you have Lupus. No one knows what it is, for one thing…and no one cares. Hey! If someone cared, they would get a new drug for this, more than once every fifty years!”

I’ve been trying to figure this out. What to do with this diagnosis (besides treat it). I have been wearing coats inappropriately for years now. No one has ever cared why.

Do you care if the person you are talking to is wearing a coat? And you’re not? I don’t think I would notice.

But maybe some people do care. So if someone asks, “Hey, Elsa! Why are you wearing that coat in the sun?” I will tell him I have Lupus…

Other than that, I don’t have anything.

It’s so weird, it’s been this way all my life. In my book I wondered (as a child), if no one knows that you have a problem, do you still have a problem?

This is a pure Saturn Neptune phenomena.   I have these energies mashed in my chart.

Consequently, I can be cold (Saturn) for no reason (Neptune) and have no one know it (obscured).  It’s quite weird.

I am also getting ready to move, most likely to a small community. You know how I am going to handle this? I am going to find myself a Gemini or maybe a Pisces. Anyone leaky or gossipy will do.

I am going to tell them I have Lupus and let them spread it around, unbeknownst to me.

“Psst – she has Lupus.”

“What’s Lupus?”

“I don’t know, but she has it.”

And then if anyone ever asks me directly, “Do you have Lupus?” I’ll just answer, yes.

Simple, huh? Neat petite.

I wanted to write this, because I think the point about nobody knowing and nobody caring is very powerful.  If no one knows and no one cares, it makes it easy, for me at least, to follow suit.

It’s not always best, your problems be your calling card.  The concept of a defined (Saturn) mystery (Neptune) seems pretty cool to me.

41 thoughts on “Nobody Knows, Nobody Cares”

  1. Come to think of it, it’s quite lucky in a way, to be able to conceal (Neptune) an illness. Some people have no choice but to show up in their wheelchair.

    It’s not likely someone ask me, how come you look like shit, half the time? Ha ha ha. Because why would they care? They don’t! They could care less!

    1. That really is awkward, asking someone why they look so bad (you always look good in your videos! *shrugs*) Like when someone tells you that you look tired, you want to slug them because it’s code for, you look like hell. I’m so glad they found out that you have Lups, only so treatment could begin! Thank you for being here!

  2. I care. I’ve had it for 12 years now and have felt what you’re feeling now.
    I remember making copies of things on WebMD for different family members to read, thinking if they were educated about the disease, they’d be more understanding of my behavior.
    Most of them never read the information because they preferred to keep thinking it was “all in my head.”
    It took years to learn to be my own advocate, find the right doctor, manage my meds all while raising 3 children and trying to work full-time.
    You know what they say, what doesn’t kill you makes you stronger.

    1. I’m sorry. I’m lucky, at least to this point. I certainly see people at the doctor who are far worse off. At this point, especially being treated, I can get by without explaining.

      It is weird though. Sometimes I am almost normal. The next day I look positively ghastly. I just can’t pay it too much mind. No one is asking for an explanation anyway.

      Right now I’m am trying to distinguish between “incurable” & “progressive”. I don’t really know of I am going to die from this yet. Probably, but I don’t know.

      I asked my doc about an intuition I had. I wanted to know if something I was taking might make this worse.

      He said he had no idea. Not in the curriculum! I thought it was funny.

      Last night, I finally had a chance to research. I thing my theory is correct. So right now, I fix my own site, and body..calling in a pro when I thing it will help.

      I am just getting ready to move. We will be the new family in town. I want to figure this out ahead of time. I want a social life.

      So how much does a person need to know about anyway?

      If I wear too many scarves for you, I guess we can’t be friends. If you don’t mind some gal in a coat, telling jokes and stories, you’ll probably like me, tremendously. And if you ask, I’ll answer.

      1. We can see either the glass half empty or half full. The glass may be half full for you considering that you’ve made (and are making) people aware of what Lupus is. That in itself inspires compassion and awareness from others. Knowledge is power, I think, when it comes to health.

        I’ve been reading a lot about this Saturn square Neptune thing, and of all the things that could manifest from it, the most valuable piece of information I’m getting is to work harder to connect with God (and/or Goddess).

  3. Ha ha ha- this cracks me up! I love you! The sad truth is no one really spends much time caring or thinking of anything other than themselves or their immediate environment for too long. It’s not that people lack compassion, it’s just people are too wrapped up in their own affairs. This is a tough world for all of us. I wish there were a cure for every illness…in a perfect world…but blah. Anyway, sounds like a good plan you have. I have no plan for how to deal with this energy. But I’m staying positive. And I’ve decided I’m going to act extremely rashly with this Uranus on my mars and just do something crazy. I don’t know how Saturn and Neptune will play out afterwards but I will deal with it as it comes.

  4. Love this, love you. I keep my thermostat at 75 degrees in my apartment. The wheelchair bit made me laugh out loud. I was eating dinner with my son tonight telling him about Stephen Hawking. Out of the blue my son put on this weird accent and said Hello! I’m Stephen Hawking! Would you please push me to my latest experiment?

  5. Lupus is an autoimmune that affects females 10 to males 1 – this in large part is why no new drug to treat has been developed in the past however long period of time. Also, I think women in general are less likely to participate in clinical trials of new drugs. Has any doc mentioned a clinical trial that you could join, Elsa?

    1. No…I’m doing well on the Plaquenill…which takes six months to become fully effective. I’ve been on it for about three months. It has helped me tremendously, so it’s sort of wait-and-see at the moment.

      In fact, I am going to move in a few months, and probably won’t see the doc between now and then. I will have to find a new one in my new city and go from there.

  6. If I saw a woman who wears layers of coats, even if in the Summer, I would be thinking, “This woman has lived!” “She has stories to tell.”


    1. That is IT! It’s the ‘odd’ that carry the most meaningful stories. In times not long past people gathered to hear them, trained as they were in the human character of empathy.

  7. Many people without having a lupus diagnosis are temperature sensitive. I see it all the time. It’s hard for me to relate to you having a disease because your writing and astrologizing are what I pay attention to. I don’t see your physical condition as defining who you are. It’s there because you write that it is, but it’s not all there is. If that makes any sense.

  8. Hi Elsa, no doctor can know everything, so there are always fresh alternatives. many years ago, I ‘accidentally’ cured my raynauds with niacin…100 mg 1-2 times a day for 6 mths. Raynaud’s and lupus are what “sensitives” are prone to. Raynaud’s is just a hyper- sensitive reaction to the environment.
    Lupus comes-AND GOES- depending on how exhausted and/or overwhelmed the ‘sensitive’ gets. Doctors see things more negatively and are not too interested in digging deeper. I’ve seen lots of people come out of lupus (the dr. says it’s a tricky diagnosis at that point Our bodies get a bit behind our full schedules…they let us know. If we listen to those whispers, we won’t have to hear the screams… Been there 😉

    1. “If we listen to those whispers, we won’t have to hear the screams…”

      This is what I’m finding out…and glad as can be. Because before I had no clue!

      80% of my problems are gone at this point…because I’m watchful, and because of the meds, of course.

      I think I am still processing it, emotionally though. Finding this out has solved a lot of problems though. I have no complaints. I just have to figure out what adjustments to make and where to draw lines.

      I have Uranus Pluto messing with me over the next 6 months…we’ll see how well I can land when the whirlwind stops 🙂

  9. Dr. Richard Schulze has had patients with all kinds of “incurable” diseases who were cured through his help. He has several excellent books that are now free on his blog. I suggest “There Are No Incurable Diseases” which covers his entire repertoire of processes. He is a fun character just like you. He’s from April 15, 1951.
    Here is his blog site, and the books are on the right side. The one I’m talking about is at the bottom.

  10. I understand what you mean. Autoimmune diseases are not always readily apparent, and since they are not as well known as other diseases like cancer or erectile dysfunction (sorry, joke), people look at you like you are making it up sometimes (“so what, she’s a wearing a coat, she must be cold” “so what, she went to bed early again, she must not be sleeping well”) etc.

    But this is something I learned a while ago about ‘nobody knows, nobody cares’. It was one of the reasons why I started feeling so disconnected to people. Sure, it’s empowering to not feel solely identified by an incident of abuse in childhood, or death of a parent at a young age, or horrific accident.

    But it also makes you feel like there is nothing and no one out there who wants to know you (at least for those sensitive types like me lol).

  11. I’ve always had wonky hormones. In no way does that compare to an autoimmune disease, but I mentioned it because I was the nut walking around in wool cardigans in the middle of August! So I wouldn’t think anything was weird about a woman wearing a coat in warm weather. 😀

  12. I receive so much from you and I appreciate you sooooo much. That being said – I don’t know if this is a new thing in our fast paced world or if it’s always been like this. People want to care about others – but they don’t really. My aunt died at Christmas – I have only told a few people – because they are so busy telling me about their own deaths and their own issues – it does not seem worth it. Everyone has so much going on – we can only care so much and then our pitcher is full. It’s kind of scary. So maybe by telling us about your illness we will keep it tucked away …. and then one day out of nowhere someone will share with us about their battle with Lupus and we will be able to give them the compassion they deserve. Thank you for sharing about your personal journey

    1. I agree with the no time/energy thing. I feel no one wants to look at the root cause of this…and as long as they refuse, it’s pretty hopeless to fix or change.

      But there are real people out there, who want to relate to someone for some other reason then to use them, stab them in the back, or whatever.

      At this point, I try to interact with people like this and dodge the others, like bullets! 🙂

  13. I know from lupus…my friend has it and has worn long sleeves forever all summer long. she’s managed it beautifully tho and i imagine you will..this hormome stuff is such a mysterious field -even to experts. my pituitary tumor was caused by hormone imbalence and I keep trying to eat more veggies, more veggies to rebalence. I too am cold all the time. bah.

    1. It doesn’t have to do with hormones. I wrote this off for five years, thinking mistakenly, that it was hormones.

      It has to to with ANA (anti-nuclear antibodies) in my blog. My immune system attacks me, lol. I know it’s not funny, but it sort of is. The enemy is within!

      Oddly, this has helped me deal better with the enemy, outside.

      What a trip.

      1. “My immune system attacks me … The enemy is within!” I know what you mean, living differently able, with MCS, the greatest lessons are about coming to terms (in whatever ways there may be … visible and invisible … Neptune Square Saturn) with that dynamic. “What a trip.” Yes, it is and without doubt it individual and inexplicable to most, though it’s the storyline the venture through it all that makes the most imprint I believe.

        You work, you write, you teach, you lay your story(ies) out and you live. Public via the blog. In private your insides may turn a trick … at least that is what I find as my immune system adapts or responds. Old tales of creation gave people the Trickster Coyote, for one, who was neither neat nor nice. He was instead full of himself, and life. Imperfect and unlikely the lessons he taught made living “supple” as Rebecca Solnit describes the stories in her article COYOTE in the Winter Issue of The New Yorker.

        I eat these reminders up so I will become more supple in my ways to manage an illness with ‘no cure.’ A trip! Yes, without a doubt a trip (a tumble, a fumble, a turn upside down).

  14. [Do you care if the person you are talking to is wearing a coat? And you’re not? I don’t think I would notice.

    But maybe some people do care. So if someone asks, “Hey, Elsa! Why are you wearing that coat in the sun?” I will tell him I have Lupus…]

    Some people do care. I always wear jackets, and sometimes this draws curiosity or criticism. Aren’t you hot? Why are you wearing a parka in 70-80 degree weather? I don’t know. I’m just cold. It’s been this way all my life. My thyroid is fine and the doc says she tends to feel cold too, so it’s probably just poor circulation.

  15. I had a friend in college who wore heavy jackets all the time, even into the 80s. Now I wonder if he had Lupus, and if so, did he know it? But I never asked him, because I figured if I needed to know he would tell me.

    I still think that way, generally. I have enough people telling me things I don’t want or need to know, that I’m not going to poke into people’s business on top of that. If info comes to me, I will pay attention. If not, I notice what I notice and let it pass by.

    1. thank you for the link…i have an autoimmune disease and have had a bad flare up the past week, and i noticed that my hormones also seem to be erratic. still trying to find ways around taking medication and dealing with it holistically/naturally.

  16. I do care a lot about other people, nature and animals etc. Sentimental I would see you and ask about your coat and your health. But I also know that people don´t really care that much about others..And it makes me very sad. Saturn square Neptune in my natal horoscope and Saturn square Moon..

  17. Sometimes, if I know people’s problems, I pretend I dont. Because I figure if they know I know, every time they see me they will think about their problem, because they wonder if I’m thinking about it. I don’t want to make people think about their problems.

    But I do tend to overthink this kind of thing, so maybe I’m the only one that worries like that.

  18. I loved this post. Raw thought provoking. Exactly how the “homeless”are seen. Bless you, Elsa. My heart is with you

  19. OMG … Elsa, I haven’t had internet for many months, only able to observe up here and not able to log in and comment. It has been AGONIZING to watch your health situation and not be able to respond (although I was sending prayers…). You simply must accept the fact that many of us care about you, even if we are only avatars on a screen, and that you definitely matter! As for your upcoming move, I think that’s an interesting approach to letting people know what’s going on with you. You are right not to use the lupus as your calling card … You are ELSA not Lupus! The physical situation is just that … it is not the person. Anyhow, I am blathering here so I sign off we big hugs to you and the hope that you accept the love and good wishes from everyone up here.

  20. One of my closest has autoimmune thingy. Hers is more like rheumatoid arthritis. It has not been pretty. She started out on really high dosage steroids. Man, she became a snortin bull. But then she started cutting back, lost a lot of weight, yeah steroids can pack on the pounds, and began to cut stress out of her life. I thought oh she will eventually be med free but she announced a couple of months ago that she will most likely never be completely med free but she is at minimal dosages. When she overdoes it physically she knows to move the dose up so she can get out of bed the next day.

    I was perplexed that lupus comes and recedes. What up with that. Are you a disease lupus or not? 😀 For what it’s worth, I read in my flower essences book that connective tissue degenerative diseases have to do with the fluid around the cells. Hmmm. I’d have to look into that to get what that’s all about. The book does cross reference astrology but all it says for connective tissue is bells of ireland and that it is best applied when the moon or mars is in scorpio. ????

  21. I am such a goofy virgo. Should I blame it on jupiter in virgo or mars in pisces. 😀 I went back to that book to make sure I got what it was saying. So to quote: ‘all degenerative disease involve a misalignment of the ethereal fluidium surrounding the cell walls. That’s vibrational medicine for ya. And that’s my virgo, yeah it’s the fluid around the cells. Nuts and bolts, eh? Not! 😀 I understand how vibrational medicine works but it’s the segmentation into subtle body, etheric body, rays and all that I just don’t wrap my head around. Good blog though. The Bells of Ireland flower sticky sap (holds stuff together) is also recommended for anxiety, stress, ovaries, and vagina. So that does kind of correlate with the stress comments and the thing about it occuring with women. Interesting. Some stuff to occupy my mind while I do tasks today.

  22. What is it that stops people from comprehending that I am ANA positive?

    I also happen to hate unsolicited advice, so if you’re compelled to offer it, please direct it at the general audience, and leave me out of it.

    I would so grateful for your understanding and courtesy. Thanks. 🙂

  23. Oooo. I hope you don’t think I was giving advice. Just joining in the conversation. Trying to put it together. And what came out of it for me is an interest in cells. There are all kinds. 😀 And it seems pretty clear, that you will listen to your body and do whatever it is is right for you. I’m now on a reading binge about cellular biology. 😀 Gee thanks. I love it. Hope you don’t mind. No offense intended.

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