Lupus…Another Update

Pluto roman godI’ve been on anti-malarial, Plaquenil for close to six months now.  It’s definitely helped me. I no longer have sores on my face (or lips).  I still have swollen joints and quite a bit of numbness, but the severity is greatly reduced.

Most notably, the last time I was really knocked on my ass was in February.  I’m talking about not being able to move. The improvement is undeniable.

I was also having alarming, freaky periods where I was narcoleptic.  I can’t tell you how bizarre this is. Thankfully, it has abated.

This morning I walked a mile…it’s the first time in close to five years I’ve felt able to do that. I used to work out on a crosstrainer on level 20 for an hour. A year ago, I couldn’t walk to the end of the block. So these are great signs. I had not trouble walking. I was comfortable.

On the downside, I am still insanely cold.  More succinctly, I can’t feel the heat. I can’t feel scalding water on my skin to speak of, but I just can’t feel the heat, period.

To illustrate, last night the temperature in the house was 77. I checked because the dogs were panting. I was not at all hot…in fact, I felt it necessary to put on thermal socks and gloves to sleep. I don’t know what to tell you. I can’t feel the heat.

I am trying to figure this out at this time. For example, I have to cool the house for the sake of the dogs. I have to do something, but I am not sure what…

I don’t want to go to a doctor with undefined symptoms. I figure if I can continue to walk a mile a day, building up to more, and I am no longer falling asleep, waking up at night with horrible pain from swelling and/or numbness – that will mean I am left with one problem – I’m COLD. So I am going to sit with this awhile.

But I’ll tell you something, I have to actually think about it. Because I can see the water steaming and I just can’t feel it…which means I can burn.

This has been going on for at least ten years. I remember my friend, Stevie, freaking out when I could reach into a frying pan and turn something with my fingers. I can pull a pizza from a oven set at 450 degrees with bare hands, balance it on my fingertips and set it on a cutting board.

I’m sorry, but I just can’t feel much…nothing bothersome, that’s for sure.

As for transits, I give this to Pluto transiting my 12th, broadly speaking. I am deeply, invisibly jacked.

Luckily, my mind is sharp. Hoo-boy!

I wonder about this too. How my brain can apparently misfire…while it simultaneously functions at a level I feel is near peak, in my lifetime.

This had definitely put me in a mystical kind of place.  And it’s shown me how little we  know about…anything.


Lupus…Another Update — 18 Comments

  1. Wow that’s major. Poor dogs too, they cant regulate their heat can they? That’s why they die in hot cars. I had a glimpse when I came down with severe flu and every cell hurt. I was under 3, 4 fake fur blankets and dogs, and couldnt get warm, it was just 1 night but it was literally like living in hell, moment to moment. It must also feel like you’re made of Teflon or wearing a flak jacket.
    I have PLuto entering 3rd and that’s giving me immunity from family when skeletons are rattling to get out – for the first time I actually dont care about consequences, other peoples feelings, what is judged to be true. Its not numbness exactly, more like, Iron Man? The truth seems more important, so to hell with everything else. Its empowering and not scary. Hoping you find a way to get truly warm.

  2. Mysterious is life, no doubt about it.

    Not being able to feel the heat a strangely ‘perfect’ melange for someone who has literally been through so much fire in one lifetime. Pointing to Pluto transiting the 12th House at this time: I relate to it, as Pluto goes through my 12th as well, crossing my Capricorn moon on his way. I couldn’t have known there was/is this range of emotions.

    I’m reading an incredible book “Broken” written by a Scottish/American woman journalist about life on the Arapaho Reservation and the life of a quadriplegic medicine man. In some very relevant ways this most recent lupus update syncs with that story. Ever heard of that book, Elsa?

  3. I am trying tonight, to just tell myself, I am not really cold. As opposed to reacting and bundling up, which is bound to reinforce the wrong sensation.

    It’s like having dyslexic body. I’ve got to feel one thing and override it, teach my body/mind how to unscramble the letters, basically. I don’t know if this can be done. But it seems the logical next thing to do. Because I don’t want people to come over and ask, why is it an oven in here?

    I am going to try to build my cold tolerance…though I really don’t know that I can.

  4. Thank you Elsa for your inspiration each day. I too, will be enjoying a cross country move very soon. I write because I believe that lupus is an autoimmune condition and most folks don’t know that diet can influence it greatly. If you look up the autoimmune protocol you will find info that may be very helpful. Don’t be overwhelmed. It’s basically just healthy food minus the grains, tomatoes and peppers. Well, okay, I spent 3 days in depression thinking of no tomatoes but it really isn’t that big of a deal when you realize the freedom from pain that it gives you…

  5. I’m sorry for the issue, but that’s it with all autoimmune diseases; I have Hashimoto thyroiditis and I’m permanently cold. My friends call me “Siberian maiden”, because I wear few extra layers of clothes in winter. Love summer 🙂 and it’s almost here 🙂
    Keep it up :*

    • I have this Hashimoto’s too…. since I am 20. I can tolerate the cold, but it gets uncomfortable. I don’t mind when it’s 90 degrees out.

  6. have you tried pranic breathing? i just started doing this and it seems to warm up the whole body. i used to be cold all the time, just poor circulation, but my whole body got warmer when i started a regular yoga practice.

    • No, I haven’t. My life is been in total upheaval, since August when we started to redo the house to get it ready to sell. I am still unsettled, squatting in a rental house…just trying to land the plane as quickly and as safely as I can.

      Once that’s done, I will try to optimize!

  7. I hangs the same problem Elsa, same treatment too, but Methotrexate, leucovorin, prednisone and vitamin b and d. I have been under treatment for two years and there has been a lot of improvement. I’m tired of taking pills, so I’m taking a break from it all. Just a month or two just because. We shall see how it goes. I have Raynauds , so my hands get really cold as I’d they are not getting any blood, but they gave me a blog pressure med for that and voila, worked for me 🙂 for this winter here in Denver, I didn’t have to take it this year.

  8. Nowadays, it seems all people are talking about, and I think justly so in many cases, of overmedication. So, it’s good to remember there are conditions that can be, in most cases at least, efficiently treated with medicines.

    I was in a dark pit too, in February. I didn’t even realize how dark, until I started to feel significatively better around the Solar Eclipse. And this largely thanks to having been diagnosed with a condition and being medicated accordingly.

  9. I know what you mean about being hijacked by Pluto. When mine crossed the IC, I died. Life is slowly getting better. My prayers go out to you.

  10. So it is said that there are seven levels of Chinese Medicine. Qi Qong is the highest level, the second highest is astrology, the third feng shui right down to what i do which is practice with herbs and acupuncture. So for sure Pluto sets the scene – but down in the basement floor – level seven – there may be a sage with a little ugly tasting brew that could move your condition to a greater state of balance. It is always about the balance. And the turtle eventually wining the race. Good luck with all this. My heart goes out to you. I totally love your spirit.

  11. Hey Elsa hope you feel better over your condition. It takes time to heal or get better. Glad the meds are helping , we all need em one way or another. Thanks for pulling through for the blog 🙂

  12. Glad you’re in a better place (quite literally) than you were in February. Hope steady improvement is yours, Elsa. Please stay away from hot pizzas. 😉 (Just thinking: I wonder if medical astrologer Lynn Koiner could be helpful to you?)

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