Ann
Thanks so much for the link on the sun sleeves! These are fantastic....
Hi Ann
I have gone out for breakfast after church, and see a group of church ladies all dolled up in the most beautiful - colorful hats : )
Ann A. said:
Dear Trisha,At age 66 I am still discovering how little other people focus on me and what I am wearing. Oh they may give me brief glance. But by and large most people are much more concerned about what they are wearing and how they look than they are about how I am dressed and my appearance.
A hat is a fashion statement. And in Western societies it has been a woman's prerogative to wear one when she so chooses for centuries. Women are not even required to take them off in Christian churches. In fact, in some churches they were required to keep them on. A woman can wear her hat to any place that she chooses - except inside a theater!
Trisha said:The sun is definitely not my friend. I bought a big hat, and I wore it yesterday at a family gathering. No one asked me why I was wearing it in the shade : ) I don't get a rash, but my aches and the fatigue are increased when I'm outside. I didn't think that I was photosensitive - because I didn't get a rash, but instead it affects me internally.
Ha,ha yes I saw those and thought the same thing : )
Ann A. said:
@ Trish did you see ones with tatooes? I want tatoo sleeves!
Jazzy,
I have the same stomach problem so I try to stay away from. But wanted to tell you that the onlyo thing that EVER helps my stomach is YOGI Stomach Ease Tea. It reaaallly helps!
JAZZYDIAMOND7 said:
I took the same things tonight, but the naproxen is killing my stomach. I was a little desperate. I know that some times I get a bad stomach ache from it but it usually helps so I take the risk. I just didn't want to sleep my "day off" away again. I wanted to enjoy the kids. Im a hat person myself, mostly for style and bad hair days but I need to start looking into some that are actually "functional" I guess, lol. I appreciate you getting back to me, just feeling frustrated tonight and it is nice to talk to someone that understands. I hope you enjoy the rest of your night.
Hi, when you are planning a day out make sure that you have some sunglasses, that really helps!! Sorry that you are having this problem!! So much comes with Lupus…Beverly L.
Well friends I just returned from Maui,“boy do I have the lupus rash"I feel and look like I have poison oak…I loved every day of my trip,but I’m sick,.I always wanted to go to Hawaii,I used 50+sun screen and a hat.Im blonde,green eyes and milk toast skin,Ive never had a tan in my life,I did everything I wanted to do and I’m paying a serious price…my Dr said” your really not suppose to fly with pots syndrome!!! And my response was ,“well"I asked god and he said I could go”!!..pots was the least of my worries…sunshine is not my friend.So I can totally relate to your plight,And I should not complain ,I new better!!! but I live in Oregon and I get so sick of the rain and gloomy weather…welcome to life with lupus…celeste
ya it gets me too to the point i get sick like the flu kind of sick and then sometimes it doesnt bother me at all, im "borderline lupus" is what my rheumy says, i go next week for next testing now i have butterfly rash so well see
I have been wearing my hat everywhere now and I have had so many comments about my cute hat, stylish hat, how stylish I look, or some people who have slowed down and looked at me and smiled. I know it is the hat so I am becoming a lot less uncomfortable wearing it and just enjoying the brief one on one with strangers. Funny, but this interaction in todays world gives me hope for our world.
Ann A. said:
Dear Trisha,At age 66 I am still discovering how little other people focus on me and what I am wearing. Oh they may give me brief glance. But by and large most people are much more concerned about what they are wearing and how they look than they are about how I am dressed and my appearance.
A hat is a fashion statement. And in Western societies it has been a woman's prerogative to wear one when she so chooses for centuries. Women are not even required to take them off in Christian churches. In fact, in some churches they were required to keep them on. A woman can wear her hat to any place that she chooses - except inside a theater!
Trisha said:The sun is definitely not my friend. I bought a big hat, and I wore it yesterday at a family gathering. No one asked me why I was wearing it in the shade : ) I don't get a rash, but my aches and the fatigue are increased when I'm outside. I didn't think that I was photosensitive - because I didn't get a rash, but instead it affects me internally.
Please go and have your eyes checked as well.....i have retinitis ...due to lupus and sun really sets it off and i can get migraines from it as well......you need to see opthamologist not optimist..and MD.
He should help you if you have it...but you need sunglasses that are dark as possible and have sides blocked...climber's glasses have side shields plus block both UVA and B rays! Plus wide brim hat that has at least 3" brim. Plus excellent sunscreen and some of clothing.
Umbrella mentioned also is great idea...i use walking sticks(hiking ones) so umbrella is hard but with large brim it works plus i stay out of midday sun.
Look for sunscreen that has American Cancer seal on it or remember white stuff i just went blank what it is called sur someone can help. Lavera sunscreen has it in it so when you apply it you literally cannot get it all in and white shows for 15 minutes then soaks in....so far it is best!
ISABELLA catalogue carries it...they literally test all their products on themselves or staff...also has great books, house and garden etc...things for soul. If you have children Chinaberry which is how they started is most excellent place to find children's books, toys etc. They always include few adult books and items in it as well.....can find both online. IF you call in, and have question they use to either have read book or used items and if they did not know they would get the person who had...but it has grown a lot so not sure if they still will....
But yes sun....GET YOUR Eyes check...that is something they can control if you catch it early
Great response Ann : )
I made the mistake of buying a hat without trying it on first, and found out it didn't protect me at all, its too floppy. So I get to take it back and buy another one.
Ann A. said:
Eyes
And if you are taking Plaquenil please read the discussion about Plaquenil and eye exams - very important. It is also important to make sure that you wear sunglasses with UV protection or you will develop cataracts earlier than need be.
Hats
I think how people respond to a sun hat wearing woman is based on the extent to which she is wearing the hat or the hat is wearing her. If she wears the hat like it is a dunce cap and she is hiding behind it and looking ashamed she evokes one response. If she is wearing the hat like it is a personal or fashion statement, then she gets another response. So ladies put on your hats, hold your heads up, put your shoulders back, and strut your stuff like you mean it. You mean that you love yourself enough to do what is best for yourself. There ain't nothing wrong with a little swag(ger). Some women only wear their crowns to church on Sunday. Women with lupus get be a little majestic seven days a week.
Every year high SPF hats become more easily available. When you are still able to get up and leave the house 46 years after your lupus dx the only question you will have about the hat is - which one am I going to wear today?
Ann, love love love it! Yes I bought cute lil caps that I can wear with my sunglasses and I bought one in each color! I don't care what people think anymore, I have to do what is best for me and I hate the way I feel after sun exposure so I'm wearing my hats lol....
Hi siskiyousis, yes I have been seeing the opthalmologist each month. I am currently using a steroid eye drop and restasis every day. I haven't purchased any sunscreen yet so that should be my next move. I love the summer time and having to be covered up is really depressing.
siskiyousis said:
Please go and have your eyes checked as well.....i have retinitis ...due to lupus and sun really sets it off and i can get migraines from it as well......you need to see opthamologist not optimist..and MD.
He should help you if you have it...but you need sunglasses that are dark as possible and have sides blocked...climber's glasses have side shields plus block both UVA and B rays! Plus wide brim hat that has at least 3" brim. Plus excellent sunscreen and some of clothing.
Umbrella mentioned also is great idea...i use walking sticks(hiking ones) so umbrella is hard but with large brim it works plus i stay out of midday sun.
Look for sunscreen that has American Cancer seal on it or remember white stuff i just went blank what it is called sur someone can help. Lavera sunscreen has it in it so when you apply it you literally cannot get it all in and white shows for 15 minutes then soaks in....so far it is best!
ISABELLA catalogue carries it...they literally test all their products on themselves or staff...also has great books, house and garden etc...things for soul. If you have children Chinaberry which is how they started is most excellent place to find children's books, toys etc. They always include few adult books and items in it as well.....can find both online. IF you call in, and have question they use to either have read book or used items and if they did not know they would get the person who had...but it has grown a lot so not sure if they still will....
But yes sun....GET YOUR Eyes check...that is something they can control if you catch it early
Lol no maam. Only a portion of my face is covered…I bought a long sleeved jean shirt to protect the other areas.
Well what i'd like to know is when the weather is warmer and i'm able to sit under the Gazebo in the back garden with sides around me, where my body temp is just right...wearing an hat, clothes which cover me and i still end up itching, hives rash down my arms, blisters on my feet and toes besides my ears and then the beautiful butterfly rash as appeared again which as'nt since i was 29....getting my head around this is sick when i take alot of precautions SO STRESSFUL.
Kawena,
If your like me there's never enough precaution where heat and rays are involved and you seem to be covering yourself like me :)
kawena312 said:
Lol no maam. Only a portion of my face is covered..I bought a long sleeved jean shirt to protect the other areas.
What I keep wondering is it that the ozone layer is so much thinner? My sister who does not have lupus but does have other auto immune diseases is now breaking out with rashes and she has never done that before. She is always in the Florida sun.
Good thought. You have said it is cumulative and yet I still don't think in those terms. I am just learning abut all this and have read tons but not like what you know. I go to see the new rheumatologist on Thursday morning. I am worried because she does not have good reviews online and a person I talked with that goes to her does not like her but feels she is okay as a doctor. I told my PCP that I did not want to go to her so what does he do? He calls her and asks her to take care of all of my autoimmune issues since she normally does not. Obviously my new PCP only half listens. I am not liking this at all.
Wow, I had no idea one would have to apply that much sunscreen every day!! I don't but then I am not out that much and when I am out then I am getting grubby and don't stop to reapply sunscreen.
Christy said:
I do think the sun is also stronger, normally a SPF of 30 is good for my daughter but not any more
I have to apply SPF 50 every half hour. every hour for her and every half hour for me. i am learning to cover up and my mom is hinting too as she got me a long sleeve swim coverup. I'm going to stop being stubborn and listen to her :) she for me alot of hats too!!
Yes, take care of your neck and face. I've been sooo itchy the past couple days because I was dumb.
Today I was smart and ended up feeling good and have energy!!
Wow Ann ,pretty drastic ,Im so sorry for you,have you found a new vacation spot that doesn’t involve a lot of sun exposure ?? "Have you ever been to the northwest?? Oregon,Seattle area??Oregon is a lovely green state that rains a lot …I do love it here…we have beautiful water falls and rivers,I thought Oregon had better water falls than Hawaii …except our ocean here in Oregon makes your feet ache…Hawaii is the first time I’ve ever swam in the ocean… Celeste
I haven’t traveled much or very far,I grew up in a small town about 40 miles from Portland,So I in a pretty good location,two hrs to the Pacific Ocean and about an hour to the Mt hood national forest…the clackamas river runs through our little town.I love to fish,but my hands have gotten so bad the last couple yrs fishing has not been on my list of things to do…I feel like I have to learn to live life differently with the obstacles lupus puts before me…I’m a country girl ,raised on a farm ,grew up riding horses,very independent ,raised with brothers,no sisters,I can’t even lift a saddle on a horse,I can’t even open my own ice tea…so I’m learning to let people help me more and I’m trying to accept my lupus instead of hiding it from myself as well as everyone else…denial will only take you so far…I enjoy coming on life with lupus just to read…everyone here has a story to tell that’s helpful to me in so many ways,Thankyou Everyone…celeste