Watch the video as I shave my head (because of Lupus)
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Lupus Warrior Using My Voice to Empower Other Warriors
Watch the video as I shave my head (because of Lupus)
Subscribe to my Youtube Channel http://www.youtube.com/user/allwayzalady
Follow The Lupie Chick on Facebook
Manufacturer: Eden Body Works
Type: PEPPERMINT Tea Tree Shampoo
Size: 8 fl.oz
Attributes: This invigorating shampoo increases scalp circulation for a refreshed, renewed feeling. Removes all traces of dirt and oil build up. Formulated to help alleviate dry scalp with the use of pure peppermint botanicals. (Taken from the Eden Body Works website)
Ingredients: Water, Sodium Lauryl Sulfoacetate, Disodium Laureth Sulfosuccinate, Lauramidopropylamine Oxide, Methyl Gluceth-10, PEG-7 Glyceryl Cocoate, Hydroxypropyl Guar, Aloe Barbadensis Leaf Extract, Hydroxypropyltrimonium Honey, PEG-150 Distearate, Tocopheryl Acetate, Sodium Chloride, Disodium EDTA, Citric Acid, Panthenol, Peppermint (Mentha Piperita) Oil, Tea Tree (Melaleuca Alternifolia) Leaf Oil, Phenoxyethanol (insert-hand cramp, had to type that out due to their ingredients being a pic instead of typed..*sigh*)
The Good: My hair felt clean as if I had used a clarifying shampoo. My hair did not feel striped once I rinsed it. I used a product sample I’d received from a hair event, the sample contained enough shampoo for me to wash my hair twice (I have a TWA) while in the shower.
The Bad: The shampoo lathers really well, A LOT. I have become accustom to sulfate free shampoos, and am not use to a lot of lather. Although my hair did not feel striped, it didn’t feel as moisturized as when I use Shea Moisture’s Raw Shea Butter Moisture Retention Shampoo. I did not feel the “tingle” many spoke about when using this shampoo.
Overall: It’s a good product, and personally I will continue to use this shampoo, but as a clarifying shampoo. I will opt for the more moisturizing Shea Moisture shampoo or my sulfate free brands for daily/weekly use.
I grew up the youngest of 5 children. I was the baby and often treated like a baby. I wanted to baby someone. Have someone to play with and have tea parties with. When momma said ” who did this?” I wanted someone else there to take the blame lol..lol.. All of my childhood friends had younger siblings. I never told anyone, but I was down low envious of them. I always wanted to be someone’s big sister, be that someone to be looked up too, and with whom I could teach and share life’s experiences with. OK, lets be honest.. I wanted someone to boss around and split kitchen duty with **insert evil grin**…
My niece, Tamecca and I are 15 months apart. We lived in the same home, went to school together, and shared some of the same friends (she was friends with my friend’s younger siblings). Growing up, we DID NOT GET ALONG . I’m not sure if it was sibling rivalry or just us being stubborn, but I don’t recall too many “fun” times growing up with my niece. I could not boss her around, and she damn sure wasn’t going to help me with my chores. We argued A LOT, it wasn’t fun to always be on edge and for some reason we were never in a good place with each other. ** insert hand on hip and side eye** BUT anyone that knew us KNEW if you mess with one it was going to be hell to pay!
Fast forward to adulthood. We have a GREAT relationship. We’ve made so many phone calls to each other to share good news, bad news, and just news. I will never forget the call I made to my niece on July 15, 2011, the dreadful phone call I wish I could take back. I called my niece to tell her I have Lupus. ** insert dead silence** because it was dead air for about 45 seconds…She tried to be brave and tell me it’s OK, but I could hear the hurt, and fear in her voice as she struggled to find the words to comfort me. My niece was the 2nd person (to my husband) I told I have Lupus. I would call her before taking any meds or to get advice relative to my treatment plan. I would call (and yell) when I was frustrated, in pain, and being a big a$$ baby. She never allowed me to feel sorry for myself or willow in pity. Her famous line “ you know grandma (my mother) didn’t play that, she worked hard so we could have, she beat cancer, you can’t give up, the doctors don’t always know what they are doing!” ..lol..lol..The calls I would normally make to my mother (who is a retired RN, who is battling Alzheimer’s) I was now making to my niece! Had she become the little sister I always wanted. The late night call I received from her after she read my blog-her yelling telling me I just took her on an emotional roller coaster crying and laughing at the same time-How could I do that to her!! lol..lol..
In times of financial strain I’ve never had to ask to borrow money, she always volunteers to give, even if it meant borrowing from someone else to give to me. We have so many things in common in our adult life-growing up- it was Toni & Tamecca (us), both of our 2nd children are girls my daughter A’Yianah & her daughter Anya ( get it.. both names start with an A, and both of our 2nd children are girls, AND they are 16 months apart in age). We both became grandmothers for the first time together (2 days apart). I remember being really mad (I think I was 12 or 13 yrs old) at her because I wanted her to call me “Aunt Toni” lol..lol.. and I was really MAD that she refused! Lol…lol… Now, she often calls me on the phone and say “hey Te Ta” in her cheery “what cha doing voice”.
I still remember the day she announced that she successfully earned her RN nursing degree-the pride I felt was unbelievable. I was shouting “SHE DID THAT” YOU BETTER WERK!!!!! ..I was calling everyone (including people who didn’t know her to BRAG about what my niece had accomplished). Finally tears of joy!!! Something to celebrate J
The late night-early morning conversations about life, family, kids, fears, joys, lows, highs, with no judgment-are PRICELESS !!!!! We cry together, we laugh together, we pray together. I love my niece sister. I’m proud of the relationship we have now, I have my sister, my niece, my best friend, my ride or die, all rolled up into one!
Love you niecy-sissy poo 🙂
Lupus hair loss can be caused by the disease itself, as the immune system destroys hair follicles, or by medicines such as prednisone and immune system-suppressants—in which case hair loss often stops once the medicine is stopped. Hair may fall out in strands, or in clumps with the slightest pull, and sometimes it just thins out and gets very fragile and breakable.
According to the American Academy of Dermatology, an average person loses anywhere from 50 to 100 strands of hair each day. This may seem like a lot but keep in mind that it’s normal to lose and re-grow hair. However, when you aren’t seeing any re-growth, then it’s typically a sign that you may have an issue with your hair.
Most people don’t even notice the 50 to 100 strands of hair that they usually lose every day. With systemic lupus, the situation can be very different, with the loss of hair much more dramatic and noticeable.
It’s not a secret that I recently experienced hair loss after my most recent flare up. I didn’t speak about it much as it was happening, but on March 15, 2013 after months of shedding, loc’s breaking off, and obvious balding around my edges, I decided to BC aka Big chop.
I went to see my home girl Camille, Owner & Natural Hair Stylist at Noiree Salon in Silver Spring, MD and had her to take it off. She seemed a little hesitant, saying that she would take me shorter but I didn’t have to BC. I said NO- I’m ready- TAKE IT OFF! In a matter of 5 minutes my two strand twists were laying in a pile on the salon floor.
The previous year, I suffered hair loss and had my cousin April cut my bra strap length hair into a Diva cut.
This time, I was ready to “let it go” (in my Keyshia Cole voice). My TWA has changed my looks. Co workers barely recognized me when I returned to work, and attendees of my event Cupcakes & Cocktails were surprised at the short hair. I rocked a TWA continuously for 7 years back in the 90’s, but most of the people that I socialize with today had never seen me with short hair.
I’m still a little self conscience about the bald spots (especially my edges) – but as we all know-sometimes its part of the process (shrug shoulders).
Beginning today I will document my journey as I take steps to re grow my hair (specifically my edges). I’m not seeking to grow my hair a certain length, I just want to re grow the balding spots.
Whether you decide to go with a wig or a new hairstyle, remember that there’s no wrong way to deal with hair loss. Everyone has a different comfort level; it should be an individual decision. Stay tuned as I document my attempts!
If you have lupus and are losing hair, do NOT experiment with over-the-counter hair loss treatments. Talk to your doctor about treatment options.
Sometimes when dealing with chronic illness, you’re inner you says FIGHT, the outer you don’t know how or where to begin. It can all be a tad bit overwhelming, and at times confusing. Below are my top 5 tips to FIGHTING LIKE A GIRL FOR LUPUS!
First we have to acknowledge that we have an illness before we can take a step in any direction. Though symptoms of Lupus differ, people with them are united by the denial, anger, fear, hope, and acceptance and other feelings they bring. At diagnosis, feelings of grief and loss had consumed me. I felt that Lupus was restricting me from the things I enjoyed; no longer able to attend cabarets (because of the loud music and the migraines), it was summer, and I was unable to attend barbecues, crab feasts, or hang out at the beach/park with my children and grandson. I felt inadequate, isolated, and withdrawn from family, friends, and the MC/SC community. A month into my diagnosis, I took to YouTube and posted a video. Instantly, when I acknowledged my disease, and stop acting sick, people stopped treating me like I was sick! I buried my grief-stricken feelings, and haven’t looked back!
Ask yourself a question. Are YOU ready to “Fight Like A Girl”? By claiming your power you pledge to stand strong and fight against Lupus. You declare that you have a power within that will help prevail against weakness and that if by chance we fall while struggling to stand we will not feel guilty but reach out to our Lupie sistas & brothers for help! I pledge to do all this and believe we can because we have claimed our power!
Step 3: Find Your Social Media-Family!
We are not alone! There are 1.5 million lupus survivors in the United States. Facebook, Twitter, Instagram, and LinkedIn have hundreds of different groups and pages dedicated to raising awareness and support for Lupus. On Facebook, you can do a search (in the search box) for the keyword Lupus. A list of Lupus support groups & pages should appear. On Twitter and Instagram the way to find someone is to search for a hashtag mentioned in a tweet/picture post. All the people who have used those hashtags will appear-you simply “follow” and most will “follow back” Some of the common hastags to search for are: #lupus, #LupusAwareness, #spoonie, #butterfly, #ChronicIllness, Together we share our pains and sorrows, our joys and pleasures. Whatever we experience we can learn to share it and fight it together!
Step 4: Become an educated Patient!
Whenever I get a new symptom, like a rash or chest pain, I say to myself, “Its Mister (aka “my Lupus”) begging for attention. No need to worry. No need to check it out. It’ll go away in a few days.” At times, this is probably true. But more often, a new symptom needs to be evaluated and perhaps treated so it doesn’t become a life-threatening event. I will post on one of the support groups that I belong too and/or I will turn to Google. It’s imperative to our health that we become “hands-on” patients and educate ourselves. As patients we cannot just depend on our doctor to tell us everything. We have a responsibility to our health and well-being to do our own research! Find out the current medical news, keep a food/illness diary (this helps to discover what foods trigger symptoms-check out this app), look up alternative medicines, talk to other patients and find out what works for them. Some great Websites to visit are: Lupus Foundation of America, WebMD, MayoClinic.com, John Hopkins Lupus Center, Alliance for Lupus, NIH, and Life with Lupus.
You’ve heard it before: “It takes a village”, “Two heads are better than one”, Each one can reach one! So reach out and help someone else begin the journey to overcoming Lupus. It can be scary, but 9 out of 10 times, there is someone who can relate and/or has experienced something similar to what you are dealing with. Together we can stand strong!
I am super excited to be taking part in the Health Activist Writer’s Month Challenge which is being hosted by WEGO Health! The entire month of April will be dedicated to sharing our stories as well as educating and raising awareness!
Day 1 #HAWMC Why I Write
Initially, I had a blog relative to natural hair. I LOVED talking about natural hair, and offering advice & tips as to how to care for natural hair. Au Naturale by Mz. Sixx was my baby. I had gained followers, was getting offers from companies to host giveaways, & meetups – I was on to something. In 2011 Lupus creped his ugly head into my life. I could no longer keep up with blogging, attending social events and was lost as to what was happening to my body. After being diagnosed, I was stumped as to how I would tell my friends and family I finally had a reason for the scarring on my face and the extreme exhaustion. I took to my blog and posted Hello-I’m A Lupie Chick.
That was the first time I had actually said the words “I have Lupus”. Wow, the response was overwhelming as most of my friends and family was not educated or aware about Lupus. The inbox messages, text, emails began to be too much. First, blogging about Lupus was a “relief” and a way that I could provide my friends and family with updates. There were moments when I felt like I was complaining or no one was reading. Months had gone by without any posts, because I didn’t want to burden my followers with my Lupie Chick issues. I started to receive tweets stating that they were about Lupus because of my blogging and interactions on social media. There were a few people in my life who suffered in silence and they were speaking through me and the blog. WHAT A BURDEN THAT WAS FOR ME TO CARRY. Additionally, I was still posting on the natural hair blog. It was too much, What if I said the wrong thing? What if I felt like saying F*uck it-would I offend someone? Would I receive hatful messages because someone didn’t like my post? How can I keep up the pace with informative content on two blogs? I came to realize that I’m human; I’m not a robot that you can switch off and on. I don’t have to blog daily or weekly. I have feelings, emotions and a voice that I refuse to silence to spare anyone else’s feelings.
In March of 2013, I combined both blogs- Au’Naturale by Mz. Sixx and The Lupie Chick = Naturally Lupie. I write to be a voice and a face to a little known invisible disease. I write in a conversational way….my grammar isn’t always correct, I occasionally use slang and or profanity-not to get attention, but because that how I speak to my friends or that’s how I’m feeling at the time. I didn’t want my blog to be a text book encyclopedia type of blog. I didn’t want my blog to be a repeat of every other natural hair blog. I wanted my blog to tell the struggle and be a pillar of strength for the weak and weary. My blog is the little thing in your head saying “yes you can and YOU WILL”. I’ve always been loud and in your face type of person (some say obnoxious)-I’m not the whispering type…so why start now? Mister (my Lupus) is loud and obxinous too- when he wants attention he show up on my face and my hair. He has tried his best to take my beauty and silence me. Most recently, I’ve had to cut all my hair off aka Big Chop the day before a huge event I was hosting to celebrate women, as a result of a Lupus flare (talk about loud and obnoxious). The hair loss has left me bald around the edges and nape of my head. I posted about it on Instagram w/ pictures, and guess what- I received 36 comments where other Lupies have or had experienced the same thing.
THAT’S WHY I WRITE; to speak up and not suffer in silence or alone. I have had moments where I had no idea what to write and felt like I had no meaningful content left to offer. I have had moments where I’ve felt completely inadequate to try to offer hope to readers when I felt so helpless myself. I have had moments as recently as this weekend when I’ve felt like I physically didn’t have anything left to give. But I do- I have LOTS more to give and I will continue to write- not only for you but for ME!
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