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Thread: Several Questions-so confused

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    Default Several Questions-so confused

    So, being recently diagnosed, I'm not really sure what I need to avoid or do to control my Lupus. I am really a complete mess trying to figure things out. Hopefully someone can help me straighten things out.

    1. I have read that sun exposure makes it worse. I can certainly say that when I am outside, I feel like I am carrying a ton of bricks and that I am going to pass out from not being able to breathe. I just thought it's b/c I'm in Texas and it's HOT! Here's the deal, I have a 3 year old daughter and we were going to be going to the zoo this summer. We actually have member passes, so we were going to be going once a week (on Fridays, as a reward). Is this not a good idea b/c of the Lupus? I know that it will be around 98 degrees here with high humidity and lots of sun. My family is also planning a 9 day trip to Disney World in July 2010 (I know-long ways out). I'm worried about spending so much money on a trip that may be miserable for me. Any tips on either of these?
    2. I'm also confused on the fluorescent light thing. I am a teacher and am in these lights all day. Do they make you better or worse? If they make me worse, should I ask for another type of lighting?
    3. I like to exercise with free weights regularly (3-5 times per week). Could that be causing some of my joint pain? I read that it is good to exercise, just not to overdo it. I always stop at the "burn", never beyond.
    4. I get kidney stones frequently, could this be from the lupus? I'm scared out of my mind that I'm going to lose my kidneys. In December, a 6mm stone got stuck on the left side and they had to do the ESWL to get it out. I've had several stones since then.
    5. Until I start treatment in a week and a half, is ibuprofen OK to take? My right leg is becoming increasingly more painful.

    There is so much to read and consider that I don't have enough hours in the day. I am trying to balance everything I've read with the few things the doctor told me.
    He said that he wanted to start me on steroids because my disease was really active right now (assuming he knows that because of the lab work). I would also be starting on several other medications. Before I do that, though I need to be cleared by an opthamologist because I get herpes simplex keratitis in my left eye when I take steroids. That is why I am waiting.
    I see the neurologist Wednesday so that he can give me the results of my EMG (nerve conduction study only-he didn't do the needle part-don't know why, but I'm not complaining!) and my brain MRI. I'm hoping they are both completely normal. But, if they are, what does that mean? Where do we go from there? If they aren't normal, what does that mean? Getting test results are beginning to cause me great anxiety.
    As I said, I'm really confused, this was overwhelming for me. And to think that I went to the doctor just over a month ago for a sinus infection and it led to this. Wow.
    Thanks for reading all this, hopefully it makes sense. I would love help making sense of all this. You can talk to me like I'm 5, I probably need it right now!

    Thanks in advance for your help!
    ~Kristi

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    Hi Kristi....

    I didn't get a chance to welcome you on your other thread so let me do that now. Hello and Welcome....I'm Lori.

    I'll try to answer some of your questions. If I don't address something, I know others with more knowledge will be along soon.

    First off, It's completely understandable to be overwhelmed with everything. You've been thrown into this headfirst...going in for a sinus infection and ending up with this diagnosis. That'll knock anyone off balance. And then when you first hear the word Lupus, most all of us get overwhelmed with all the information that's out there...trying to sort through it and match it up with what our doctor tells us. So, what you need to do is slow down and don't expect yourself to figure it out all at once. You need to take things one day at a time...sometimes one hour at a time. You are starting in the right direction though, by joining this forum and seeking answers. There is a wealth of collective knowledge from our members and some really great people to provide reassurance and support at all times. There's always someone here to listen.

    I'm wondering...have you read through the 'Sticky' posts that are at the very beginning of Lauri's Lounge? They are full of very valuable general information about Lupus and how to live with it, that some of our experienced members have posted. They stay at the top of Lauri's Lounge so new members can find them easily.

    There's a 'Sticky' post about protecting yourself from the sun. You definitely need to read that one. For pretty much all of us with Lupus, the sun is our enemy. You need to be very careful when you are in the sun. It's important to protect yourself with a good sunblock and hat to cover your head. You need to wear clothing that will keep your body exposure to a minimum. Several of our members purchase UV protective clothing which you can find on a website called Coolibar. I think it's quite expensive, but worth it for the protection it provides.

    The zoo pass is such a great thing when you have children, and I don't want to discourage you from enjoying that experience with your daughter. What I would suggest is that you protect yourself as much as possible from the sun, make sure you bring plenty of water for hydration and maybe try to get there as early as possible in the day, before the sun is at it's strongest. You might even think about carrying a UV protective umbrella to pop up when you're standing in the sun for a period of time. Just as extra protection. Or you might try arranging your zoo time by alternating time out in the sun with some time in the shade, like a bench under a tree for a break, or step inside a building to view the animals so you can get a break from the sun. I would suggest the same thing for your trip to Florida. Don't plan too much outdoor time all in one day...or go out early morning till about 10 am and then head back to the hotel for some rest and shade by the pool. That's what we did with my kids at Disneyland when they were little. In the hottest part of the day, we'd head back to the pool and my husband would swim with them, while I found a shady spot by the pool to read or nap. Then when the sun went away, we'd head back to the park to have dinner and enjoy more rides. You don't have to avoid your special vacation...with a little planning ahead, you can still enjoy the fun.

    As far as the flourescent lights, many of us on this forum have been talking about them and it seems as if they do cause us problems. We are sensitive to Ultraviolet lighting, and that does include flourescent lights. I think most of us are finding ways to avoid them or change out the bulbs for other kinds if we can. It wouldn't hurt to talk to the administration at your school to see if there are other options for your workspace.

    Your kidneys....I remember one of my biggest worries when I was first diagnosed was that it was going to attack my kidneys and I'd lose them. I've had Lupus for 27 years now, and I've had several kidney infections and had kidney stones (wow, they are incredibly painful aren't they?) after my second preganacy with my daughter. But each time, they have been treatable and I've never had any long term problems. If you've got a good Rheumatologist, you can most likely count on them to keep a close eye on your kidneys. Just be sure to inform them if you suspect any problems or concerns so they can stay on top of any problems. One thing I can tell you for sure is that stress and worry can very much affect the course of your disease. I know it's hard not to do, we all do it when we have Lupus, but you need to try to keep your stress to a minimum. When you find yourself doing the worrying thing, try to distract your mind with something else to keep you busy.

    Exercising....yes it's a good thing to keep you healthy...just be careful in everything you do and try not to overuse any one joint too much. When you use the free weights, move around frequently to different muscle groups, so you don't use to much repetition on one particular joint. Make sure you carefully stretch out before and after each workout....that's my faithful rule when I workout at Curves. And if you find that one particular area or joint is having pain or problems, then skip that one for a workout and give it a rest. And for the days when you might have too much pain to workout, just try very gentle stretches. And your question about Ibuprofen for pain...that's what I use and it works great. Just be sure your doctor is okay with it. If you're having joint pain, there's no reason to suffer needlessly. If you find an over the counter med, and it's ok with your doctor, then definitely use it.

    Kristi...I didn't mean to write you a book to read here...but I could 'hear' your desperation in wanting some information, so tried to jump in best I could. I know if I missed something, others will be along to fill in or add to what I've shared. And please keep asking your questions of us....we are more than happy to help those that are new to this. When I was diagnosed at age 18, I had not one single other person with Lupus to talk to at all. This illness can make you feel so very alone at times and I want you to know that I care about you and don't want you to go through this alone.

    Fondly,

    Lori
    Last edited by Rastagirl; 05-12-2009 at 04:23 PM. Reason: Brain fog...

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    Wow! Lori has done a fab job in helping you there!

    love
    Angel.xxxx
    I am still here,just been on new meds so unable to function like i used to.I will pop back,just know im thinking of you all and hoping you are keeping on keeping on.xxxxxxx

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    hi kirsti,

    i agree with angel, lori did an excellent job of providing information to help you live with lupus.

    I am presently at the beach, i only go out early in the morning, and after sunset. I am wearing long sleeves, and long skirts, hats and sunglasses. So far, i have not had a lot of trouble. By afternoon, i start to feel the pain and fatigue, but i can get past it. I agree, the zoo is a great place to share with your daughter, and i hope that by following lori's suggestions, that you can enjoy this experience with your little one all summer.

    As far as the lighting in your classroom, if the school can not change out the fluroscent bulbs, then you should use sun block (not sunscreen) each day before you go to school.

    I know you are worried about the results of your different tests...just understand, it is more common for us to get results that are normal and the drs. usually say "it must be your lupus". I hate these words, but they are a reality in our lives. But, you should always get these tests done whenever symptoms are there. I kept thinking that my heart thing was just a symptom of the lupus....turned out to be totally unrelated, has been fixed, and i feel better.

    this is a frightening time for you, and just know that we are here to help whenever you need us.
    Phyllis

    share a smile today

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    Hi Kiristi...

    I would just like to add, about your work space. Maybe they could install panel diffusers over your fluorescent classroom lighting...do they know you have Lupus. If not, they maybe willing to accommodate this request...

    These are diffuser panels...follow the yellow brick road..link..http://www.stratusdesigns.net/fluore...ght-covers.php

    If you don't want to inform them about your illness..maybe ask if you can purchase them and have them installed...

    Hope you had a wonderful Mother's Day..Happy Belated one...hugs.

    Be well, keep well..
    Love,
    Oluwa
    I have Lupus. So *^#@! what.

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    Thanks for your help! You have answered my questions thoroughly!
    My only thing is still about these lights in my classroom. First of all, my administration knows. My principal is being very supportive through everything, in fact, she calls me at home because she wants to make sure I'm OK. I've worked for her for 5 years, she's really the best.
    So, the lights in my classroom. They are standard fluorescent lights with the cover on them. Is that not a diffuser? I see that the diffusers on the posted sites are fancy with pretty pictures on them. Are they better at blocking out the UV light?
    I'm thinking I have a really good understanding of why I feel worse during the school year.

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    Firstly, let me just say.. I have only just joined this site yesterday and all I have seen so far is a wealth of supportive people. Amazing. Well done to all.
    Secondly, I am a bit embaressed to ask.. what is the difference between sun block and sunscreen. Confused??

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    hi kristi!!!! wow! Lori DID DO a GREAT job Welcoming you! She Always does!!! She covered it all!!!! I am a personal trainer(im not working now cuz of my illness) and Lori gave Great advice about exercising. It IS SO IMPORTANT to keep your body moving. Cardio lubricates your joints so its a good idea to warm up at last 10mins before your weight training exercises. Cardio, weight training and stretching after your workouts is SO GREAT for people with this illness. Its great for EVERYONE of course, but to keep our joints moving and stretched out is SO IMPORTANT for us. Exercising HELPS us, it doesnt HURT us at all! Like Lori said though, listen to your body and do your workouts accordingly. I personally feel WORSE mentally and physically when i DONT work out, but there are days i go much lighter than others! Im glad to hear your taking care of yourself in the ways that are within your power to do so!!!
    We Live in a MORTAL, FRAIL, IMPERFECT world in which the word "FAIR" doesn't always apply.Make EVERY MOMENT COUNT with the ones you LOVE because it can end in the blink of an eye. Love, Jeannette

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    Hi Wysiwyg! As far as i know, there is no difference. Ive heard that they just have 2 different ways of saying what they do, either way they keep the sun from absorbing into your skin. The higher the # the better, and make sure you reaply after 2-3 hrs!!
    We Live in a MORTAL, FRAIL, IMPERFECT world in which the word "FAIR" doesn't always apply.Make EVERY MOMENT COUNT with the ones you LOVE because it can end in the blink of an eye. Love, Jeannette

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    Ultraviolet rays are given off by indoor fluorescent lighting commonly found in offices and stores. Fluorescent Light diffusers that cover fluorescent bulbs can be ordered from several different manufacturers. If you are affected by light sensitivity, look for light shields that have nanometer readings of 380 to 400. This ensures complete filtering of UVB and UVC (especially damaging to exposed skin cells), and almost all UVA.
    Fluorescent light diffusers are not the regular covers that you find on fluorescent lights. They can be decorative and/or change the color of the lights. They are often made of acrylic and most agree that if a standard fluorescent tube lighting source is shielded by a standard acrylic plastic diffuser, there's virtually no significant risk for people with systemic lupus.
    if a person with lupus is exposed to unshielded fluorescent lighting at close distances for prolonged periods of time, then the cumulative exposure to UVB and UVA could be a problem and can cause a flare!

    I hope that this has been helpful to you

    Peace and Blessings
    Namaste
    Saysusie
    Look For The Good and Praise It!

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