Comments on: What Not to Say to Someone With Lupus https://lupuscorner.com/what-not-to-say-to-someone-with-lupus/ Health Info on Lupus Symptoms, Treatments & Research Thu, 04 May 2023 16:02:42 +0000 hourly 1 https://wordpress.org/?v=6.2.4 By: Tammy https://lupuscorner.com/what-not-to-say-to-someone-with-lupus/#comment-270556 Thu, 04 May 2023 16:02:42 +0000 https://lupuscorner.com/?p=6031#comment-270556 ]]> hello, my name is Tammy and this article is great, I will be sharing it, Thank you ๐Ÿ˜„

]]> By: Tammy https://lupuscorner.com/what-not-to-say-to-someone-with-lupus/#comment-270557 Thu, 04 May 2023 16:02:42 +0000 https://lupuscorner.com/?p=6031#comment-270557 ]]> hello, my name is Tammy and this article is great, I will be sharing it, Thank you ๐Ÿ˜„

]]> By: Tammy https://lupuscorner.com/what-not-to-say-to-someone-with-lupus/#comment-270558 Thu, 04 May 2023 16:02:42 +0000 https://lupuscorner.com/?p=6031#comment-270558 ]]> hello, my name is Tammy and this article is great, I will be sharing it, Thank you ๐Ÿ˜„

]]> By: Barbara https://lupuscorner.com/what-not-to-say-to-someone-with-lupus/#comment-257630 Wed, 01 Feb 2023 23:18:34 +0000 https://lupuscorner.com/?p=6031#comment-257630 In reply to Peggy Miller.

My family doesn’t understand how much it takes for me to do everyday activities. My daughter does after working for a senior care center and seeing devastating effects of SLE. I had a great career, but it’s exhausting despite me loving every minute. Many just don’t understand. Yes, why aren’t you working, you look fine. You are faking this… You ride horses but you don’t work? What they don’t understand is equine therapy reduces neurological pain, overcomes stressor, and has been part of my life beginning at age 2. I am most pain free on the back of a horse, having a massage given by the movement of the horse. I need help saddling sometimes. My husband has witnessed my pain and finally recognized that I’m not being lazy avoiding farm chores, but it even took him a long time to realize that. it’s an invisible disease that takes a toll when others question and say a person is “faking” to get out of work. Thanks for this article. I shared it to FB.,

]]> By: Dr. Barbara J Kahl https://lupuscorner.com/what-not-to-say-to-someone-with-lupus/#comment-257628 Wed, 01 Feb 2023 23:06:42 +0000 https://lupuscorner.com/?p=6031#comment-257628 I’ve heard it all. I was diagnosed when I was 11 after rheumatic fever. I had to go to an adult doctor as pediatricians told my mom it was growing pains and “water on the knees”. Sadly, but funny now, when I saw my parents’ doctor, he ran labs. He called, thrilled and excited!!! He called us in to the office stating.. “You are the only truly sick patient I’ve seen all week”! I made his day. At that time, a year of bedrest was ordered, aspirin and penicillin. My brother’s and sisters said I was just lazy, slept all day. It took 3 years to find the right management of my symptoms. People, even family, don’t quite understand lupus. As I got older, I found what worked. I did move to an island near the equator to rid myself of pain. It Worked! However, it was a l8festyle I couldn’t keep without the rest of my family, so moved home. That brief tropical weather reset my pain neurons. My family has been kind knowing my pain was so bad I’d move half way around the world to reduce it. They were worried with me being by myself. My doctor, however, still doesn’t understand the correlation between my move to the tropics and lupus. She still quantifies it as “fibromyalgia” despite bloodwork, pain, kidney, sight and all the other issues I have. I’m just exhausted seeing so many physicians with no clue of what lupus looks like. My parents physician, trained decades ago has passed…he knew. Why is it not taught today for more sensitivity by the medical profession now, I just don’t know. One has to see a “specialist” now just for basic SLE care.
I like this article, I wish I could tag my doctor to read it.

]]> By: Peggy Miller https://lupuscorner.com/what-not-to-say-to-someone-with-lupus/#comment-243713 Wed, 26 Oct 2022 22:13:26 +0000 https://lupuscorner.com/?p=6031#comment-243713 ๐Ÿ™๐ŸปIโ€™m putting this up on social media and sending to my family and friends]]> Omg thank you so much for this article I literally cried after reading your article and saying to myself yes finally Someone saying what I think and feel on a daily base. Thank u so much๐Ÿ™๐Ÿป๐Ÿ™๐ŸปIโ€™m putting this up on social media and sending to my family and friends

]]> By: Peggy Miller https://lupuscorner.com/what-not-to-say-to-someone-with-lupus/#comment-243712 Wed, 26 Oct 2022 22:13:26 +0000 https://lupuscorner.com/?p=6031#comment-243712 ๐Ÿ™๐ŸปIโ€™m putting this up on social media and sending to my family and friends]]> Omg thank you so much for this article I literally cried after reading your article and saying to myself yes finally Someone saying what I think and feel on a daily base. Thank u so much๐Ÿ™๐Ÿป๐Ÿ™๐ŸปIโ€™m putting this up on social media and sending to my family and friends

]]> By: Peggy Miller https://lupuscorner.com/what-not-to-say-to-someone-with-lupus/#comment-243714 Wed, 26 Oct 2022 22:13:26 +0000 https://lupuscorner.com/?p=6031#comment-243714 ๐Ÿ™๐ŸปIโ€™m putting this up on social media and sending to my family and friends]]> Omg thank you so much for this article I literally cried after reading your article and saying to myself yes finally Someone saying what I think and feel on a daily base. Thank u so much๐Ÿ™๐Ÿป๐Ÿ™๐ŸปIโ€™m putting this up on social media and sending to my family and friends

]]> By: Ivy https://lupuscorner.com/what-not-to-say-to-someone-with-lupus/#comment-231415 Sun, 28 Aug 2022 21:39:40 +0000 https://lupuscorner.com/?p=6031#comment-231415 My favorite is.. โ€œhold on we have to wait for slow pokeโ€ or anything of that nature. As a woman battling this for 24 years. Yes Iโ€™m moving a lot slower than I used to in my younger years but quit comparing me to people that are fast moving. I canโ€™t help it

]]> By: Ivy https://lupuscorner.com/what-not-to-say-to-someone-with-lupus/#comment-231416 Sun, 28 Aug 2022 21:39:40 +0000 https://lupuscorner.com/?p=6031#comment-231416 My favorite is.. โ€œhold on we have to wait for slow pokeโ€ or anything of that nature. As a woman battling this for 24 years. Yes Iโ€™m moving a lot slower than I used to in my younger years but quit comparing me to people that are fast moving. I canโ€™t help it

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