My name is Sue .   I was diagnosed with systemic lupus (SLE) in 1992. I also have subacute cutaneous lupus (SCLE), autoimmune hypothyroidism and Sjogren’s Syndrome.

Autoimmune disorders are frustrating and vexing. If you have one (or more) you understand what it’s like. If you don’t and decide to read this blog on a regular basis, you’ll eventually learn something. I’m not sure exactly what but hey, this is a blog after all.

I created this blog to write about life, friends, family, lupus and an array of stuff.

Most of the photographs that appear on the header of this blog were taken by me.  I particularly like macro photography, but am pretty happy when anything turns out halfway decent.

 

 

 

And speaking of stuff, here’s a picture that I like a lot. It’s one of my favorites … Waverly Beach, Wisconsin.

 

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12 responses »

  1. Your son is a handsome boy. I guess I should say man.

    I take prednisone for severe arthritis in my knees and back. I’m down to 10 MG and my orthopedist wants me down to 7 1/2. I tried getting off it completely but couldn’t walk at all. I hate taking it. My question is: I read somewhere on your blog about steroid hot flashes. Did you mean from prednisone? I ask because I never got hot flashes from menopause which I am through with but for the last year I have been getting mild hot flashes and that’s just about when I started taking prednisone. I wonder if there is a connection? What do you think?

    I think there’s a big connection between prednisone and hot flashes! If you’re at 10 mg prednisone congratulations! From what I’ve read about prednisone (and believe me, I’ve read a lot), it basically takes over the work of the adrenal gland, which stops producing adrenaline naturally when we are on anything over 7.5 mg of prednisone daily. That’s probably why your doc wants you to eventually wean down to that magic number. Of course, weaning down steroids is tricky business and should be done very slowly. I learned that the hard way, throwing myself into bit trouble when I decided to taper by 10 or even 5 mg a week!

    I hate taking it too. But like you, I want to walk without pain.

  2. I have been taking 7.5 mg prednisone for the past couple of weeks and have noticed no difference so I will stay there. Thanks for the info. I think it’s best if my adrenal glands are working.

  3. You have a lovely blog. I hope you have more good days than bad. Thank you for visiting my wee blog and hope to see you there again soon! ~S Le~

  4. Hey!!! i was just reading all your stuff and think you should add me on FB 😀 i have fibro so i kinda sorta in a way know what you are going though 😀

  5. Hi Sue, after many years of pain & sickness my wife was recently diagnosed with lupus. It’s not a nice thing to live with but she does her best. I can never fully understand how hard it must be because of not having it myself but seeing what she goes through makes me sympathetic toward anyone who has it. We also have a young friend, he’s only 22, who has it as well, poor kid.

    Will keep your wife and friend in my prayers. Stay strong!

  6. I read your blog and I feel for you. I have Lupus and my case mirrors yours. The Sjorgens has really did a job on my teeth an my mouth in the last few years. I am to have surgery soon, however the Lupus has now affected my heart and my rate is 120 or higher all the time. We are trying a new drug from India. A beta Blocker med is not possible to take, because I have very low BP, when they tried me on hit my heart rate decreased, however my BP went to 50/0. Do you get tired a lot?
    By the way I live near Kimswick, MO.

    Thanks for stopping by to say hello! I’ll keep you in my prayers for a successful surgery. Hope the new drug from India helps! Yes, it doesn’t take much to make me tired. Sometimes it’s very frustrating because I used to have all sorts of energy. These days, I try to listen to my body and rest when I need to. Otherwise, I’ll have trouble walking and aching joints!!

  7. Hello !

    I’m a woman from Norway who is diagnosed with Lupus.
    Lupus is an unknown disease in Norway, and the people who have SLE/Lupus is not open about it.

    Liked to resd your blog, and signed up as a follower.

    Have a nice day!

    Best regards from

    Laila

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