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taffylinden

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 #1 
I had more energy today than I've had for a long time. We had rare sunny weather, so I decided to go for a long walk. I waited until 4 p.m. wore a jacket, pants, and a wide-brim hat and sunglasses, and wore sunscreen, and I spent half the walk in the shade. Now I'm sitting here with chills, sore joints, and nausea (aka "lupus tummy"), and the Raynaud's is going berserk. I know there are patients who can't go out in the sun at all, but I've never reacted this strongly, and dang it! I did everything right, didn't I

Or didn't I?
shutterbug

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 #2 
Taffy- I'm sorry to hear that you had that bad of a reaction. Sounds like you did everything that you could think of and the UV rays got you anyway. I am super photosensitive and all of my clothes are washed in Sunguard to give them a 30 UPF protection. I also have to use a UV face mask if I am in the sun or under fluorescent lights. I also use a wide brimmed hat, always have long sleeves and wear UV protective fingerless gloves everywhere.
taffylinden

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 #3 
Knowing about people who have it as bad as you do makes me realize how stupid I am for complaining. I'm feeling slightly better today, but all the symptoms are still there. It occurs to me that the stress of the eye situation might be one reason I reacted so much more than usual despite precautions. But you have to deal with so much worse so much of the time, I am humbled. 

I take my wide-brimmed hat off to you!
shutterbug

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 #4 
You weren't complaining, you were asking a question about how a reaction could happen despite taking all the precautions that you can think of. Some of the UV rays that most people don't even think of are the ones that bounce back up from the ground. Light colored tile or concrete are the worst culprits for it. I have seen a device called shade that measures the amount of UV that you are getting and alerts you when you are getting close to your threshold. Since it's $300 and I'm pretty sure that my threshold is 0, I haven't bought one. It's called Shade. Anyone out there have one or tried it?
taffylinden

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 #5 
Thanks, Shutterbug. Is there any way to protect from the ground-bounced UV, or is it just by doing what we do for overhead light? If the Shade device is new, maybe after awhile, prices will come down. It sounds like a great device for lupus sufferers.
shutterbug

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 #6 
I haven't found a reliable way to keep the UV rays from bouncing back up, not sure if there really is one. I pretty much live covered head to toe when I'm out of the house. Was not fun when watching my grandson at my daughter's hair appointment and he kept pulling my face mask down. He thought it was a great game. I'm paying the price tonight.
taffylinden

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 #7 
Holy cow, I didn't realize you had to wear a facial mask as well. I feel for you. How old is your grandson? 

I went for a long walk again today BUT  it was raining--zero sun . I also wore a long-sleeved jacket, jeans, a hat, and sunglasses. (My eyes are very light-sensitive.) I seriously didn't know if I could make it back home, and now I'm sick again. Maybe Taffylupus reacts to fresh air. If I get my vision improved, my retirement career will be Part-Time Mushroom.  
paml2923

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 #8 
Hi there, I'm new to the boards and happened on this thread. The first thing that struck me about Taffylinden's post was that  you said "I had more energy today than I've had for a long time". I think that comment is telling when it comes to Lupus. Sometimes I feel like a yoyo! Good days, bad days, days you wake up and wonder if you'll make it out of bed. I've learned to pay close attention to the 'good' days and make sure I don't go overboard. Not that I'm always successful because we all know those energetic days are rare and we want to take full advantage of them. Even when I'm listening to my body, the next day is what tells me if I overdid it. Moderation. I really detest that word because before Lupus I was that type A who packed 25 hours into a day. As far as the UV contribution, that's a mixed bag. Sometimes I'll break out in rashes (even with long sleeves, long pants, hat, all while living in sunny Florida) for no reason or my face will change 4 shades of red and swell up. The swelling is unbearable and exhausting, no body should have to through all of this.

taffylinden

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 #9 
Hi, paml2923. Good to have you here!

I think it's especially hard on those of us who are used to being very active and pushing ourselves. My reaction to any and all difficulties is to power through. Yesterday, for instance, I reminded myself as long as my legs kept stepping, I'd get home. 

The thing with lupus is it makes us exhausted, and yet physical activity is so important for us. This is a balancing act that is very hard for me. I've always pushed myself very hard when working out, and that habit is hard to break. Most days I'm so tired, I don't see how I can walk into the gym, let alone work out, yet I always feel better once I start, and then I can't seem to stop myself. I've been in bed all morning, but my fever is down, so naturally I'm hoping I can get to the gym later, even though I know that's not just stupid but highly improbable. 
paml2923

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 #10 
Hi Taffy,
Good to hear from you. I think talking to people who are going through what you're going through, is always beneficial. I am so fortunate to have not one but two dear friends with autoimmune diseases. The one has been a friend for nearly 40 years and she suffers from RA and Psoriasis. She is 20 years older than me and was such a big help when I was falling apart and didn't know why. It also helps that she's an RN. She told me to start applying for disability because it takes years to get a hearing. I poo-poo'd her saying I'd be fine, the RA drugs were helping and I had a great job that I didn't want to give up. Well, she didn't give up and finally I applied mainly to shut her up. The last year I worked, I thanked her profusely. I had gone downhill so far in 2 1/2 years. It took all I had to finish up my work in order to leave 6 months later. My other friend is like the sister I never had. We met about 12 years ago at the park, walking our dogs. We bonded over our love of dogs but then we learned we both suffered from autoimmune diseases among other ailments. The two of these women and I are our own support group, therapist, shoulders to cry on, etc. I think if you can find that type of support when you're ill, it makes life that much better.

I look forward to these message boards. I'm trying to stay on top of the new research and new drugs. I've gone back on Benlysta recently because nothing has been helping. My flares have flares! So my doctor and I decided Benlysta was better than nothing. I'm also on Acthar gel, the injectable for the inflammation. The last few years my Lupus has become quite difficult to control and I realize its taking quite a toll on my body. It can be so disheartening to realize the disease is winning. 
taffylinden

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 #11 
Support is pretty great. I have close friends and family who support me, but it sounds like you have a golden support group. Good for you!

I've been told I probably qualify for disability now due to my vision issues, but I'm not ready to apply yet. I think disability is great for everyone else who qualifies. I just can't get past my pride. And it would mean giving up on my vision ever improving, and that's too upsetting to contemplate. 
Bikermom

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 #12 
Hi Taffy,

This Lupus takes so many different ways to Flare it not funny. I have been on Predisone 40mg, Plaq, Cellcept, Lisinopril & Laixs for a really bad 3 month flare. My worry is my eyesight is very blurry. So much so, I dont drive at night. Saw the eye Dr. said the Plaq was not harming my eyes and it was probably the Predisone. I am now down to 15mg but do not see much improvement. Was yours caused by drugs?
shutterbug

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 #13 
Taffy- my little spitfire of a grandson is a little over 4 months old. I have him quite a bit of the time and he completely wears me out. The face mask thing must be a fun game because he did it again a couple of times while we were out. Yeah, I wear the face mask when I know that I have to be under sunlight or fluorescent lights. That means most any time that I leave the house. I do get lucky and find a few places that the lighting isn't horrible in and I can look like a relatively normal human being for a little while.
taffylinden

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 #14 

Hi, Bikermom. The answer to your question is yes and no. Gee, with answers like that, I should run for office! I'll explain below. First, you were so smart to get your eye doc to check out your eyes. Good for you! The two main concerns with long-term prednisone use are increased pressure inside the eye (which could lead to glaucoma) and cataracts.  Long-term use of steroid can cause cataracts. It's important to wear UVA-protective sunglasses when out in the sun. My eye doc has me where them on cloudy days as well. But it sounds like your doc checked you for both those things, so not to worry. I know blurred vision can be a side effect of prednisone, but other than those two reasons, I'm really not sure WHY it does this. That's a real concern though, especially if your vision is that blurry. What does your eye doc say about this blurriness? Will it improve? What's the plan to correct your vision enough that you can live your life?

As for me...I'll try to be concise. I have a bunch of eye issues, most of them related to lupus or medications. I've had four corneal transplants and will be on steroid eye drops the rest of my life because I'm high-risk for rejection (indirectly due to lupus). They gave me cataracts long ago, but I've had cataract surgery in both eyes so have artificial lenses in both. Plaquenil, which is really very safe, damaged my left retina and optic nerve, so I have glaucoma now, too. My pupils are permanently dilated part-way because a few times, I've had to be on dilating drops continuously for weeks at a time to prevent the iritis from getting worse. (The pupils dilating and constricting irritates the iris, so this "freezes" the pupil.) But that just makes my eyes more light-sensitive. 

The bottom line is I can still see, sort of--for now, anyway. And I'm grateful. 

krismarie

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 #15 
Taffy, have you always been that super sensitive to sun exposure or was that a sudden change for you?  The reason I ask is that prior to last year, my symptoms remained pretty consistent and I knew what to expect whenever I was exposed to the sun for years but last year I experienced very dramatic, scary changes with just the slightest exposure to sun and/or heat. Almost like a huge progression occurred and impacted multiple systems...or a major flare unlike one I had experienced before.
  
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