Picking the right scarf = material that can handle the hot water required by sunguard, not too sheer, color and pattern that I like.
Since I have been out of the pool, I have allowed my hair to grow and it has followed its natural tendency to curl tightly. It is not the kind of hair style that works with my usual straw hat. So I had an idea. I took several of the cotton infinity scarves received over the past year and washed them in sunguard. I drop them over my head before I leave the house. Standing at the front door everything is covered with UV protective cloth except my neck and face. These are covered with either sunscreen or sun block depending on time of day and the amount of time I will be outside. I love my UV protective gloves and the fact that my car is sunshaded all around.
Just before I step outside I pull the scarf up over my head and all the way down to the top of my UV protective eyewear. I pull it up in front to cover my chin. When I reach my destination, I drop it back down and sometimes arrange it more artfully. Hair is smoothed down instead of sticking up. Sunscreen and make up are well blended. The scarf makes a great acessory for my wardrobe choices. And because I am "looking good" while protecting myself from the sun, I am wearing the best acessory of all -a giant smile.
Somedays the bear gets me. But when I pull off sun protection with my unique sense of style and a smile, that bear's behind is mine.
I love the scarf idea! I use cotton scarves all year long and never thought to wash them in sunguard. I wear the big sarong style for the bright pop of color and to hide the thyroid nodules. I’m sorry you are so stressed but I’m really excited that pennsaid is working so well for you. I recently developed the discoid patches and feel like a prisoner in my own home from the sun danger. Oddly enough I developed them after starting cellcept. Thank you for the scarf idea, I wear enormous hats and sunglasses but my face was always an issue. Hugs to you!
Oh, oh,oh!!! Ann A. I found this water that has taken down inflamation in my body and the pain in my feet. When I have a discoid rash or a lupus sore I put it on it and it heals it. I am in love with it. It runs with titanium plates that ionize the water and change the ph level of the water. Autoimmune diseases, cancers, tumors, etc cannot survive in a non-acidic environment. Japan has these machines in all their hospitals, but united states won’t put them in theirs because the pharmacutical companies would loose way to much money. I have been saveing my “pennies” lol for 2 yrs since I have missed 9 months being ill with lupus flares, from work in the last 2 yrs it took me awhile, lol, but I got my machine last month and it was well worth the wait. Last time I was on the water under the care of my dr, I was able to go off all my meds into remission for 3 months! It is called Kangen water. You can find info about it online. I wish you pain free days soon Ann A.
Ann, you are giving me memories of my younger days!! There was nothing quite like a cig. and a coke! I think I l lived on that when I was going through my first divorce. I was so skinny and not healthy. But such pleasure!!
Did you have enough expresso to share with the firemen? : )
Ann A. said:
I guess me and the bear broke even yesterday. One week I am getting shot in the eye and before that is healed there is a needle in
my sacroiliac. The trauma goes on and on one day at at a time. 46 years is a long time to live with this stuff. And of course it has been storming for days. These weather systems are like being beat with a whip. Wham rest wham rest wham and the to do list remains and there is no rescue. Today I had a visit from the fire department. Heating cream to froth my expresso - need the caffiene - cream spilled and burned - smoke every where, Turned off stove, opened doors, did not make it to phone to givec security company the clear. HEard neighbor on porch and then heard fire truck coming. I really need to make it to appliance store. Dinner in slow cooker. Fresh beets, chicken breasts, collard greens, spring onions, fresh tomatoes.
Protecting myself from UV -replinishing the D - eating well - seeing docs - working - and trying to survive another storm season without a flare. Big trigger. Hanging on.
I enjoyed this discussion, and I was reminded just yesterday that I am not alone in this chronic pain thing. I have a coworker with UC/Chron's and she is going through a tough time, and I asked her how she was feeling yesterday - and she said it was a bad day, they told her she had to eat, so she was going to eat - but she didn't want to. I want to share with her that I UNDERSTAND, but I don't because I don't want the whole office to know that I am sick. Bad enough that they see me limp around, which has gotten worse, be I wore flip flops last Sunday after going to the Y, and guess who is paying for that mistake?
Ann, you are getting prayers from me. I understand about the storms and so much more that you are going through. I think of you and many others here that have far more problems then what I am having and try to thank God for only having what I do have. Gentle hugs! Reet
Hang in there Ann! You have been dealing with this for soooo long! I was wondering since you have had lupus since you were very young, what did they diagnosis you with back then? Or could they have decided it was lupus? Just curious as we have so many problems today getting a diagnosis. I know I have had it for many years myself, but who knew?
That is a lot Ann! I remember I was in my 30's and I had lupus like symptoms and they told me to just say I had Hashimoto's. I always had strep throat infections too, then bronchitis and sinusitus. They are checking me now for heart and lung functions. So we will see. You have a real gem of a PCP, mine keeps farming out to specialists although she is an internist.
I will send you some prayers to banish that old infection! I still have my tonsils too!
Thanks for all the info I find it so interesting because we are so close in age.
I too am trying to keep the lupus away it's not ever easy! I drove for 4 hours last weekend and got bad sciatica from just driving! It's always something, but my spine is quite a mess itself!
I'm glad you brought up the your weather watch. I took a nap two days in a row, and woke up feeling like I had a hangover, instead of feeling refreshed. On Friday, I actually feel asleep in the living room, with my favorite blanket, my dog climbing underneath (its her favorite blanket too!) and I had one of my pillows from my bed to snuggle with. I fell asleep, and had a sound sleep. Saturday, I also fell asleep, in the living room. But I awoke feeling out of sorts, not refreshed. And then I read your post about the weather, and even though we haven't had storms here - the drastic change in temps and the rains - the barometric pressure must be going all over the place. I am going to track the barometric pressure and journal the results this summer.
Ann, I am thankful that the weather in San Diego is pretty steady. However, it too has been a little crazy lately and it can
really bother me too. The sun is so bad on me and lately I have been so short of breath. Could be the heart thing! Going to see my Rhumy tomorrow and she will get an earful. So glad that simple things bother everyone else like they do me so I have more backup. She is quite understanding though so it shouldn't be a problem.
Sounds like you have a big week ahead so leave the yard work!! Just an idea!!!
Ann, have you heard about sunscreen products that have ecamsule (mexorole SX) in them? I was told about this by a friend and the lack of a really good sunscreen made in the US. The ecamsule one comes from the UK..