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    Community Voices

    Things I’m Longing For Today

    Finding seashells on the beach.


    Forests filled with moss and mushrooms.


    An end to my pain.

    #Lupus #photosensitivity #sunlightallergy

    1 person is talking about this
    Community Voices

    What is worse?

    I don't know which is worse: being up All nite without sleep completely,OR going to sleep early, then waking up a couple hours later and not able to go back to sleep AT ALL!!?? The second one is like a Tease: gives you a taste of sleep,which is great! BUT that's ALL you get!! No more sleep,period!
    Then,the Up All Nite with NO Sleep whatsoever !! And then Up All Day with No naps! And the Big Question is,Will I Sleep Tonite?? Which tortures you ALL Day!!. What will you do as bedtime approaches? Which would you prefer?? The Tease or the Guarantee?? Or,do you want to be surprised?? Which do you want???!!

    #Insomnia ,#Bipolar 2, #Anxiety ,#RA & OSTEOARTHRITIS,#Fibromyalgia ,#chronic Pain,#spinal discs & nerve involvement,#Torn Hip Lable anchor,#Neuropathy ,#PTSD ,#Depression ,#chronic Eye disorder,mainly Double Vision,#Increasing number of Falls,#Quad Cane for mobility assist,#MORE Anger,#Stressincrease ,#coloring to help Decrease Stress at home,#photosensitivity ++ Rashes,#chronic Itching,#chronic Frustration,#Too Many Meds that I Need All of Them,#Peppermint Ice Cream as go-to Comfort Food when Pizza not available,#My Own Music Therapy,#a Christian & Believer in Prayer,#Wordiness - not know when to Shut Up!!!#a Highly Sensitive Person,#a TV time Rationer on purpose to keep stress & anxiety at lower amount,#Art Lover- just not talented to produce Art myself,# The End.

    6 people are talking about this
    Community Voices

    Getting new glasses tomorrow

    Well I’m picking them out and they will be here within the week (Thank God for Medicaid) Medicaid will cover the glasses and the tint I need will be less than $20 out of pocket. The good thing with being high-risk during this mess is my wife and I have saved a lot on gas and other stuff, so we can afford it, no problem.

    I’m so excited! Will post pictures when in store and when the finished product comes in!

    Now I don’t have to wear two sets of glasses all the time, and it’ll be a lot easier using my headset for speech-to-text

    #IdiopathicIntracranialHypertension #photosensitivity #Bipolar1Disorder #ADHD #FuriouslyHappy

    Community Voices

    Happy to be here! I went to Washington DC to advocate for us

    <p>Happy to be here! I went to Washington DC to advocate for us</p>
    1 person is talking about this
    Community Voices

    What products or solutions have you used to deal with the bright lights from driving at night? #Fibromyalgia

    Now that it's winter, it's dark earlier and I can't avoid driving at night. What products or solutions have you used to cope with the bright lights that hurt the eyes? My fibro doctor says that #photosensitivity is a symptom of #Fibromyalgia, but was unable to give me any solutions. #Photosensitive #Astigmatism #Fibromyalgia

    7 people are talking about this
    Community Voices

    Any suggestions about what I should do next? #PostconcussionSyndrome #Neckinjury #photosensitivity

    I’ve been through a lot of appointments in the last 6 plus months since I fell skiing. For the most part they have been very helpful to a point but each therapist I see gets to a dead end where there knowledge and training can’t take me any further. Recently someone suggested seeing an osteopath so I will try that but it takes a while to get into - I’m willing to try pretty much anything if it might help. So it occurred to me that there may be other suggestions out there that I am not aware of - because I had never heard of osteopathy before.

    4 people are talking about this
    Jae Cobb
    Jae Cobb @jaecobb

    Surviving Summer When You're Sensitive to the Sun

    The weather is getting warmer and that means longer days, fun activities, warm weather and sun. But what do you do when the sun and heat are not your friends? Well, one could hide in dark rooms for the next few months, but I don’t believe that’s the healthiest solution. Photosensitivity means being allergic to the sun. Wild, right? How can someone be allergic to something that provides such vital nutrients? Well, it is possible! People who are photosensitive have an immune reaction triggered by sunlight. It can cause rash, redness and inflammation. Heat sensitivity can cause fatigue, nausea, vomiting and exacerbate symptoms of chronic illness. Anyone with these disorders should take heed to how they are feeling and take appropriate precautions. Here are my tips for surviving the summer when you are photo and heat sensitive. Please be advised that these methods are what work for me, and they were developed through discussions with my treatment team. Always check with a physician before taking a medication or trying a new routine. 1. Hat I love a hat. My favorite is a baseball cap, because I make them look amazing. However, I have had to upgrade to the huge sun hat in certain situations. These are my life savers. They protect my forehead, cheeks and scalp from the sun. I get a bad rash on my face from sun exposure, so it is essential to protect my face as much as possible. 2. Sunscreen I have always believed in sunscreen and I have always used moisturizer with sunscreen in it, but it wasn’t much. After being diagnosed with many chronic illnesses and put on meds that make sun exposure more of a risk to me, my doctor suggested using baby sunscreen daily on my face as a moisturizer. Best advice ever! It is gentler on my skin and a higher SPF which is great. 3. Appropriate clothing I know the weather is getting warmer, but I wear three-quarter and long sleeves during the summer. I need to protect my skin as much as possible. I have found wearing longer sleeves helps me not burn as much and I stay a bit cooler. I am also in air conditioning a lot and get really cold, so that helps too. 4. Limit exposure to sunlight This may seem like the easiest one, but it is the most important. We all want to play outside and enjoy summertime activities, but do be conscious of how long you are playing outside. If you must be outside, try to hang out in the shade to protect yourself. It doesn’t alleviate all issues, but it can help you a lot in the long run. Also, if you need to pop up that umbrella to ward off those rays, do it! I carry one in my purse so I have that emergency layer of protection. 5. Huge sunglasses Audrey Hepburn and Mary J. Blige set the trend for us all! As a photo and heat sensitive person, these save my life daily. Big sunglasses protect my eyes and ensure more of my face is covered. And hey, they complement the hat! 6. Water It’s a great accessory to any and everything. Make sure you keep your water bottle full and with you at all times! If you cannot avoid being in the sun and feel yourself not feeling well, here are some things you can do to survive the summer. 1. Wear compression garments I swell in the summer and my body tends to feel like it is on fire. I find that compression garments help. I have a great sleeve for my forearm, gloves for my hands and of course compression socks galore! They really do reduce my pain and inflammation. 2. Soak and use Epsom salt products They help to reduce inflammation as well and soothe pain. I use Dr. Teal’s body wash, Epsom salts and lotions with essential oils and these help to calm the pain and my mind. This is important in pain management because if you calm yourself mentally, your pain may ease up as well. The essential oils in these products are amazing, as well as the healing powers of the Epsom salts. You can also make your own scented Epsom salts with essential oils. 3. Steroid cream to calm skin irritations and inflammation My doctor gave me a great cream for when I break out in terrible rashes. It is a blessing to help control the spread of the rashes and reduce redness and swelling. Talk to your doctor about this option. 4. Hydrate! Even after you come home from your sun excursion, that does not mean you stop hydrating. If anything, you need to increase fluids and electrolytes more because your body needs them to refill nutrients lost after sun exposure, especially if you were engaging in activity. These are just a few things you can do to make going through summer just a bit easier. I know it can be hard, but just a few ounces of prevention can go a long way. So here’s to a happy and safe summer!

    Community Voices

    Laser Hair Removal and Photosensitivity

    Hi guys!
    I have solar urticaria, so a pretty extreme photosensitivity. I'm also Persian - so I've got a mustache that I'm really not a fan of. I've not had luck waxing it or plucking it or bleaching it or using depilatory creams. So I'm taking the plunge and doing laser. Anyone have experience with laser skin treatments and photosensitivity??
    #ChronicIllness #SolarUrticaria #laser #photosensitivity

    1 person is talking about this