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#HAWMC Lupie Chicks Love Hate Relationship with the Sun

20130411-204927.jpgWinter has finally realized that his season is over! Spring is here; the birds are chirping, the flowers are blooming, sun shining, warm weather (75+ degrees daily), fresh spring/summer fruit is ripe and sweet (I had the best strawberries from Sam’s club last week). I love this Caribbean type weather, the hotter it is the more I enjoy it! What’s there to complain about?? The sun… ooh the sun is NOT my friend. Lupie Chicks such as me should avoid exposure to the sun as much as possible. Photosensitivity is one of the most aggravating triggers of our disease. It doesn’t take much exposure to ensure that we have a reaction. I went out yesterday for lunch with a girlfriend (trying to be “normal”). After lunch we walked around, enjoying the fresh air and the street vendors. Minutes after I returned to my desk, the nauseous feeling, and migraine hit me like an atomic bomb. I could feel myself slowly deteriorating right at my desk. I wanted to crawl under the desk and lay in a fetal position until it passed. I held it together trying not to bring attention to myself. As soon as 5 o’clock came, I was OUT of there, went straight home…. 3 extra strength Tylenol and 2 hours later Advil, I SHUT IT ALL THE WAY DOWN….

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For us, sun exposure, even for as little as 30 minutes, causes us to develop migraine headaches, makes us feel nauseas and/or we will experience painful joints. Additionally, exposure to the sun can cause our disease to flare-up (an increase in the activity and symptoms of the disease. This may cause an acute attack of arthritis, pleurisy (chest pain when inhaling), fever, kidney disease, and even epilepsy. Sun sensitivity and UV light sensitivity (photosensitivity) is present in about 90 percent of patients with systemic lupus erythematosus (SLE), 40 to 60 percent of patients with discoid lupus, and about 70 percent of patients with subacute lupus erythematosus.

I had to get back into my “summertime” routine. ** I occasionally, try and move about my day like my counter parts and not like a Lupie Chick, BUT I can’t, it’s not healthy for me. I’m accepting that the few extra minutes it takes me to do the extra things are well worth it at the end of the day.

Skin, after my shower, I start by applying Shea Butter (which has a SPF of about 5) & Coconut Oil (whipped together) as an all over skin moisturizer (body only-not face).

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I then apply sunscreen (to my entire body). My dermatologist recommended Neutrogena Age Shield (SPF 70). Face, I apply Clinique Super City Block Oil-Free Daily Face Protector Broad Spectrum SPF 40, then follow with Clinique stay Matte Sheer Press Powder. You can CLICK HERE to review my complete skin routine (including usage of Clarisonic cleansing brush, hydrocortisone, and daily face cleansing).

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( I wasn’t being a diva, I was in my summer time protective gear)

Clothing, I wear either long pants, mid sleeve top, with a long sleeve spring/summer sweater or blazer (to cover my arms) or I wear maxi dresses (that come pass my ankles- to cover my legs) along with a summer sweater or blazer. I can’t adorn a hat or scarf to work, but I will wear sunglasses, if I have to go out during the day. On the weekends I will wear a wide brim hat or scarf. I purposefully bring my lunch and avoid going outside until after 2:00pm (when the UV rays aren’t as strong), If I must go outside earlier in the day, I will also use an umbrella to block the sun. Shoes, I typically wear flat ballerina shoes, but most recently I’ve had to opt for pep toe flats (due to Subungual Hematoma).

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Dress  & Sweater Target, Sandals Nine West, Necklace-hand made by Me

I try and wear brighter colors, (it may be my imagination) but it seems as if the dark colors draw more heat. I have to take every precaution necessary to stay cool. The season is here, and we have to be careful and take extra precaution to stay well during these spring/summer months.

Disclaimer: The information included on this blog is for educational purposes only. It is not intended nor implied to be a substitute for professional medical advice. The reader should always consult his or her health care provider to determine the appropriateness of the information for their own situation or if they have any questions regarding a medical condition or treatment plan.
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Farewell Mishinda


Yesterday morning I was contacted by the aunt of one of my blog followers. I was taken aback by the call, as I’m super busy finalizing details for my upcoming event (Cupcakes & Cocktails). The caller sounded unsure as to whom she wanted to speak with.  As I waited to try and catch the voice she asked if she could speak with “The LupieChick”. I paused as I knew this was a Lupus related question as no one refers to me as the Lupie Chick in conversation. I acknowledged that I was the person she was looking for and she began to tell me about her niece, Mishinda. 
Mishinda was 26 years old, mother of 2, and had passed away from complications of Lupus on Sunday, February 24, 2013. I instantly felt my heart break (literally, I had a pain in my chest) as she began to speak about Mishinda. It pains me to hear stories of anyone lost their fight with  Lupus. Funny thing, she didn’t sound sad. She was laughing and telling me how Mishinda loved my blog and my willingness to just say whatever I wanted. Her favorite post was Am I Being A Bitch Or a BabyWe laughed as I was slightly embarrassed by the title of that post. Mishinda referred to me as a pistol whipper (lol…lol…). She commented that she looked forward to my daily pictures of me smiling (I haven’t posted any pictures of my face in a while, as I’m going through a flare up and have the butterfly rash across my face) and my reference to Lupus as Mister. 
Then, she suddenly  her tone of voice became serious. She stated that Mishinda asked her family to find me and get in contact with me because she wanted to speak to me. “ME????? “  Was my reply, as I never had any interaction with Mishinda? The family tried feverishly to find me, finally coming across my Facebook page, in which has my phone number listed. She asked me if I would attend the candle light virgil on Friday night to honor Mishinda. — INSERT A PAUSE AND A LUMP IN MY THROAT—ME????  Ya’ll know I have a fear of public speaking. She replied- YES, we would like you to come and speak. I told her that I’m not a medical professional, I refrain from giving medical advice, and I can only speak about my experiences and my desire to bring awareness. Her reply: “BE YOU – BE THE FUNNY LUPIE CHICK THAT MISHINDA SO LOVED AND ADMIRED” [insert uncontrollable crying]. 
After I stop crying, and contacted a few friends, as I was unsure if I should attend. I questioned my ability to speak publicly (I have a MAJOR fear…. stomach is in knots RIGHT now as I think about it), I questioned what would my presence bring, can I meet Mishinda’s expectations or the families expectations, what would I stand up there and say??, sweating, stiff and straight like a statue with nothing coming outta my mouth?? [Oh my!]. All my friends encouraged me to do it and to let God guide my words. I realize the honor and blessing. I pray that I can deliver and fight through this fear.  I will attend the candle light service, and honor my lupie sister Mishinda the best way I know how. I can hear my siStar now “Sixx, You better werk hunty” (lol…lol…lol…) DO THAT!!!!!
Fam, I write this blog with no hidden agenda. My ONLY agenda is to share my life, and my experience with Lupus. I have no idea the number of people with whom my blog had inspired, made laugh, cry, or angry but I’m grateful to each and every one of you. Mishinda has encouraged me to continue to push, fight, and advocate for all Lupie Chicks. I NOW realize that Lupus is my ministry. It’s my duty to be a voice and a face for the invisible disease. Please keep me prayed up as I enter this new chapter of my life. #LupieChicksUnite!!!!!!!

Twitter: @lupieeChick
Instagram: @naturally_lupie
Email: lupiechick@gmail.com

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Infinite Possibilities

in•fi•nite / adjective
1. immeasurably great: an infinite capacity for forgiveness.
2. Indefinitely or exceedingly great: infinite sums of money.
3. unlimited or unmeasurable in extent of space, duration of time, etc.: the infinite nature of outer space.
4. unbounded or unlimited; boundless; endless: God’s infinite mercy

pos•si•bil•i•ty noun, plural -ties for 2.
1. The state or fact of being possible: the possibility of error.
2. Something possible: He had exhausted every possibility but one.

Most people start the day with infinite possibilities, and energy to do whatever they desire. For the most part, they do not need to worry about the effects of their actions. I’m a planner, for years I would choose and iron my clothes (and accessories) for the week, I would plan my meals for the week, I grocery shopped for the month. Now I need to think about the weather, my temperature that day, and the whole day’s plans before I can attack any one given thing. When other people can simply do things, I have to attack it and make a plan like I am strategizing a war. It’s very frustrating, especially when the plans change, hence my common saying “I hate change”.

My boss gave me a sticky note that says “Change Energizes Us” I wrote NEGATIVE on the note. Change makes me bonkers and I have to re strategize to make it through the day. I now live with the looming thought that today may be the day that a cold comes, or an infection, or any number of things that could be very dangerous.

The difference in being sick and being healthy has to make choices or to consciously think about things when the rest of the world doesn’t have to. The healthy have the luxury of a life without choices, a gift most people take for granted. The hardest thing I ever had to learn is to slow down, and not do everything. I fight this to this day. I hate feeling left out, having to choose to stay home, or to not get things done that I want to. I wish I could make people understand everything everyone else does comes so easy, but for me it is one hundred little jobs in one. When you begin your day, most people start the day off by showering/bathing, get dressed, go to work or school, come home, eat dinner, relax, go to bed. For me- it’s open 1 eye, the other, sit up, put your legs on the floor, stand up, walk to the bathroom..GET MY DRIFT- its 100 little jobs in one. It is the beautiful ability to not think and just do. I miss that freedom.