getting ready to go to sleep.
not doing nothing. not the chores, not any book learnin', not a doggone thing......not washing nothin', or cooking nothin'. just not. taking a break for station identification.
my hair feels so short. left half of my pony tail on the floor at the salon. --- 3-4 inches shorter......whoooowee. got purple blue toes......and meds. very expensive helpful meds.
yesterday when i left i got in the car, buckled up, hit the garage door button.......and felt my face heating up. red and hot. didn't eat anything unusual yesterday.
not hot from exertion......I just get this flushing every now and again. My cheeks are red hot red. My chin......neck, around my collar bone all turn a variety of dots, streaks and it brings a temporary sunburnt kind of heat. it is uncomfortable, it feels embarrassing. i have tested negatively for Lupus every time over the years, it just seems to come whenever it comes and it feels pretty miserable. it is different than hives, it is similar to the mylar rash, but not permanent.
nothing has changed, no new food, detergent, soap, chemical, medicine changes that could have influenced it. i don't really know why, just that i have to bear up. it looks a lot like the flushing that used to come with menopause, but it is not menopause. there is no hot flash, no sweats, no panicky feeling.........but it does feel like i have an uncomfortable sunburn every place the red takes over.
And yes people do stare, it is a bright cherry red.......it is not subtle. at all. i arrived at the salon and the receptionist stepped out from behind the desk and helped me sit down.
at the nail place one lady handed me a sturdy paper fan and another lady walked over and fanned me with a magazine. the other girl got me a fresh bottle of cold water. sigh, sigh, sigh, sigh. i would like to dive under the floor when that happens. from pasty white to red hot in seconds is not the way i wish to be remembered. some people can really make an entrance, i prefer to slip in and slip out quietly.
it lasted for a few hours.....and then it retreated back to wherever it goes. i tend to think that it is somehow Sjogren's related, but who freaking knows really? please pray for me that the overt whomping me on my bum symptoms subside. the weather is lovely, but a flare comes when a flare comes and it is astonishing how much it impacts walk, talk, balance, ability, brains and rest.
i wish i knew how to crochet or knit. i have such an earnest desire to knit baby things before arthritis says i can't...........sometimes i get this sense of urgency to do things now cause i feel like more abilities are at risk and i won't be able to later..........not trying to be negative, it's just a gut feeling......do ya'll ever get that? i looked at yarn and needles yesterday and felt like it's now or never and then rode off and completely forget to buy either one. fibro fog is so rude.......in some ways and in others it saves me money.......lol.
it's so quiet in my home. so hush-a-bye quiet. so nice and peaceful. ahhhhhhhhhh, time to tuck myself in to bed......read for a little while or maybe catch an episode of Murder She Wrote. Tonight's co-star is none other than George Clooney. Before the world decided he was a hottie he was kind of a cute dork......and don't laugh but I have a secret wish that he fall head over heels in love and have a six pack of fat happy babies with a good woman.............good night all!
my hair feels so short. left half of my pony tail on the floor at the salon. --- 3-4 inches shorter......whoooowee. got purple blue toes......and meds. very expensive helpful meds.
yesterday when i left i got in the car, buckled up, hit the garage door button.......and felt my face heating up. red and hot. didn't eat anything unusual yesterday.
not hot from exertion......I just get this flushing every now and again. My cheeks are red hot red. My chin......neck, around my collar bone all turn a variety of dots, streaks and it brings a temporary sunburnt kind of heat. it is uncomfortable, it feels embarrassing. i have tested negatively for Lupus every time over the years, it just seems to come whenever it comes and it feels pretty miserable. it is different than hives, it is similar to the mylar rash, but not permanent.
nothing has changed, no new food, detergent, soap, chemical, medicine changes that could have influenced it. i don't really know why, just that i have to bear up. it looks a lot like the flushing that used to come with menopause, but it is not menopause. there is no hot flash, no sweats, no panicky feeling.........but it does feel like i have an uncomfortable sunburn every place the red takes over.
And yes people do stare, it is a bright cherry red.......it is not subtle. at all. i arrived at the salon and the receptionist stepped out from behind the desk and helped me sit down.
at the nail place one lady handed me a sturdy paper fan and another lady walked over and fanned me with a magazine. the other girl got me a fresh bottle of cold water. sigh, sigh, sigh, sigh. i would like to dive under the floor when that happens. from pasty white to red hot in seconds is not the way i wish to be remembered. some people can really make an entrance, i prefer to slip in and slip out quietly.
it lasted for a few hours.....and then it retreated back to wherever it goes. i tend to think that it is somehow Sjogren's related, but who freaking knows really? please pray for me that the overt whomping me on my bum symptoms subside. the weather is lovely, but a flare comes when a flare comes and it is astonishing how much it impacts walk, talk, balance, ability, brains and rest.
i wish i knew how to crochet or knit. i have such an earnest desire to knit baby things before arthritis says i can't...........sometimes i get this sense of urgency to do things now cause i feel like more abilities are at risk and i won't be able to later..........not trying to be negative, it's just a gut feeling......do ya'll ever get that? i looked at yarn and needles yesterday and felt like it's now or never and then rode off and completely forget to buy either one. fibro fog is so rude.......in some ways and in others it saves me money.......lol.
it's so quiet in my home. so hush-a-bye quiet. so nice and peaceful. ahhhhhhhhhh, time to tuck myself in to bed......read for a little while or maybe catch an episode of Murder She Wrote. Tonight's co-star is none other than George Clooney. Before the world decided he was a hottie he was kind of a cute dork......and don't laugh but I have a secret wish that he fall head over heels in love and have a six pack of fat happy babies with a good woman.............good night all!
Replies
Ruthie I get that sunburnt hot sensation diderent areas of my body. I break out in a painful rash red bumps. The bumps stay but calm down after a flare. They itch too. Yesterday it was my stomach & my back. I think it has to do with our Sjogren\'s. I need to ask my Rheumy next week about that.
You did it! You got your haircut. Brave one :). Nails all pretty in blue.
I use to crochet blankets but then my hands & fingers would stiffen up.
I watch Royal Pains tonight. I love that show. It\'s a doctor clinic set in the Hampton \'s. Saturday night is the Miss America pageant . I watch that every year. My left leg, foot ache & feels numb every evening.
Sweet dream my dear friend. Love ya
Sounds like the redness could be Sjogrens related. Or possibly a medication reaction? Or maybe at the time you\'re just incredibly embarrassed about something you did long ago and it\'s just taken this long for the memory to catch up with you! LOL...anything is possible with these crazy bodies of ours. I certainly do hope your doctor can figure something out. Lupus would be a good guess too, but if you\'ve tested negative for that. BTW...there is no one specific test for lupus!!! A positive ANA is NOT enough for diagnosis of this illness. There are eleven criteria for lupus. Rash is only one. Pain is another. Sun sensitivity......hot/cold sensitivity, cognitive impairment.....it took them three years to diagnose my daughter with lupus because she did NOT have a mylar rash, so they just discounted lupus. THEY WAS WRONG!!! There are other blood test too that need to be done, and your white cell count is usually low with lupus. I dunno. I think I\'d really grill my Rheumy about this. Could be that some of your flares are from lupus and a small dose of steroids would help you tremendously. I ain\'t no doctor. I just have a kid with many of your symptoms and it makes me wonder, that\'s all!!!
Glad you got your hair cut. I just finished trimming my own. You know how it goes, I haven\'t felt well enough to go to the salon, so I just trim the edges off, all the way around and use the curling iron (as my muscles allow) and it all looks like it\'s supposed to look like that! LOL...a curly, confuddled pile O\'Hair on ma head!! Just walk around like you think you look hot, and people will just pass on by!!!
Hope you had a good night\'s sleep, Sparrow!! oox
Short hair rocks,easy to do, dippety do you know? Mine is short and wash and wear works...no fussing with machinery and goop....nope...would love to see a picture of you someday, Ruthie. xxoo