Wednesday, August 31, 2011

Am I Being a Baby or a B*tch

I’m going to preface this by saying- I’m NOT in a good space right now. I’m agitated, and annoyed. I force a smile upon my face daily to provide my children the comfort of knowing that mommy is going to be ok. Outside of wearing makeup to cover the skin rash, I also wear makeup to make my face look brighter and “awake”.

I'm realizing that some people have diarrhea of the mouth and don't know when to SHUT UP! I understand that people sometime want to say something, but don’t know what to say. What I don’t need is for you to tell me about your family member(s) or neighbor(s) that died from Lupus. I’m NOT bringing the thought of death into my mind space. Dont't tell me its reality- maybe YOUR REALITY- BUT NOT MINE! A typical convo go like this:

You: I’m so sorry to hear you have Lupus
Me: Thank you, I appreciate the concern
You: I had a cousin that had Lupus- the medications are deadly, it killed her
Me: -_- (no response)
You: tomorrow, I will bring you my cousin doctor’s info. We’ll talk about it later... I gotta go

WHAT!!! Do people not understand boundaries?? I find those types of conversations completely out of line- especially coming from people that I’ve only had 10-15 mins worth of conversation with in the past year. The first few time it happened I bitched about it internally and shrugged it off. The occurrences are too frequent. The last time, I told the person (while gritting my teeth) that the conversation was inappropriate and although I appreciate the concern, I would rather not discuss myself or Lupus any further- Good right? No... I find out later she went and told someone else that she was only trying to provide comforting words to me and I was being a bitch- how comforting is it telling me that the lupus meds killed your cousin?

In addition to people telling me death stories, I’m constantly being hit with “You don’t look sick!”Let’s address that- WHAT EXACTLY DOES SICK LOOK LIKE? Do I need to look like I’m on my death bed to appease you? you’re curiosity? What is your definition of a sick chick? Tell me?

I put in a lot of effort not to look the way I feel. Most times I feel like I’ve been ran over by a truck then shoved into the boxing ring with Mike Tyson {and he wins!). I still have to work, I still have to be available and mobile to my children and I don’t want to give into “being SICK”. I’m NOT going to do it!

I’ve never felt the type of fatigue that I experience at least 6 days out of 7. The smallest task (cooking for example) will take me to a place of exhaustion. I’m now listening to my body- when it says sit down, I sit... When it say lay down- I lay, when it say- YOU'RE NOT GOING- I DON’T GO...

As, I’ve previously advised, I will not push my body beyond limits- won’t and cant! I will not allow any negative energy into my mental space- You’ve been EVICTED- so when I just turn and walk away from the negativity- take that as notice! You’ve been served!

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Monday, August 22, 2011

Coping with Lupus Headaches

I have begun to suffer from Lupus headaches. These are not like the average headache, pop a Tylenol and it go away. These are more on the end of migraines. My head feel like its splitting, pounding, piercing, throbbing and aching all at the same time. Followed by a spinning sensation like a tornado and a feeling of nauseous and sometimes vomiting. Typically these headaches start mid day and lasting hours into the evening. Thus far, I’ve been taking Ibuprofen to treat these headaches, but most of the time the only relief I get is from rest. I turn off the lights (make the room as dark as possible), turn off the TV, and go to sleep.

I've been told that one of the ways to help prevent headaches or migraines is to understand your possible triggers. In order to do this, health care providers often recommend using a migraine diary (also known as a headache diary). This is a tool that allows you to clearly capture, in a standardized way, how often you get migraines, how severe they are, and the possible relationship to physical, emotional, or environmental factors. There are several down able diaries, electronic diaries, and headache diary apps(s) for (Iphone, Ipad, and Droid Mobile cell phones). * They make apps for everything*

I'm trying to avoid harsher treatments and drugs such as Plaquenil and prednisone to treat these headache episodes. This seems to be the first drug of choice upon complaint of the headaches. I prefer natural alternatives therapies such as exercise, diet supplements, meditation, special diets and maintaining a strong support system. I’ve also been told that conserving energy by setting limits on how I spend my time is helpful. Fatigue is a common complaint for lupies. Listening to your body's signals by resting or taking short naps during the day can help reduce the occurrence of lupus headaches.

I’m starting my headache diary today, a gluten free diet, and hopefully I can figure out what or who ( my triggers . If you have any advice- please share ….

Thursday, August 18, 2011

Lupie Emotional Roller Coaster

Who knew that revealing to the world that I have Lupus would take me on an emotional roller coaster? I still remember having written the post 4 days before I released it. I would read it every day, and become nauseous at the thought of releasing it. On Friday [August] the 13th, I decided to finally publish it. As soon as I hit publish, I was panicked and tried to figure out how to delete it. Before I could delete the post, it had already gone to my yahoo groups, and emailed to my blog followers it was too late! Immediately my phone started ringing, emails, text, tweets, were all coming in so fast that I turned my phone off, went to the bathroom and cried. I got my composure, grabbed a hot cup of green tea and came back to my desk- 5 minutes later a co worker came over and hugged me [ I forgot that some of my co workers follow my blog] tears instantly started streaming down my face. Friends and followers told me how emotional they were reading the post. Some were so emotional that they couldn’t talk- that’s why they took to text and email. I thought to myself “why were YOU so emotional” I didn’t get it. I didn’t think much more about it, until later that evening when the tweets came in and people were crying and asked if they could forward my post. I found myself getting depressed.

“Why did I write the post” I asked myself over and over. I wasn’t ready to be the face of Lupus- or was I? People started asking me more questions about Lupus. Some had never heard of Lupus and some only knew it as the disease that Toni Braxton has. I started to explain as best I could, provide an explanation for the condition of my skin, and my inability to move sometimes. Most were very compassionate, and then something happened. I no longer was Mz. Sixx or Sixx (mc/sc club name), or Au’Naturale (my Twitter name), or Toni (child hood nick name), I was the helpless natural haired lady with Lupus. People started treating me as if I was sick. I know it was all heartfelt, and came from a place of love- but it made me a crying mess and I felt like a burden to people. Now every minute was about Lupus. Here comes the babying “ how are you”, “are you feeling OK” “sit down”, “lay down” “go home”, AGGGGGGGGHHHHHHHHH!!!!!

I had wanted to make a you tube video with me actually speaking on it, but I felt like I had nothing to talk about [Up until this point I had only created picture slide shows]. Well today was going to be different- I needed to get a few things of my chest. My hand was hurting to bad for me to type- so I came home, grabbed my lap top, sat on the floor and just started to speak. I didn’t edit it, apply music, and make it “cutesy”. I wanted it to be raw- because that’s how I was feeling at the time.

Click Here to watch Video

This experience has made me reflect on who I am. Among the many hats that I already wear, I just added one more – “The Lupie Chick”. I’m realizing that I have to be selfish [in the instance] and make myself a priority. I’m the star on the team of “ME”. Some won’t like it- but guess what? I don’t like having Lupus either [shoulder shrug]. I have to listen to my body and not push myself being what I can handle. I will not give in the “pity parties” that some have invited me to join. I will not be treated like a helpless baby, and I will not hide. I will LIVE and ENJOY my life until the wheels fall off-and all the wheels must fall off before I stop [insert fist pump]!

[climbs off the roller coaster]

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Tuesday, August 16, 2011

Hello-I'm a Lupie Chick


Where do I start…

My Name is Mz. Sixx and I have Lupus
that was very hard for me to say :(

Face Fully Made Up w/ Dermablend

Some of you are familiar with my skin troubles that I’d been experiencing for over a year. I would try different things, some worked for a while, and some never worked at all. Growing more and more frustrated and embarrassed by my skin, I went to get my prescription re filled for a facial cream my dermatologist had prescribed to me. Hoping that would be my saving grace.

Partial Makeup

As I began any normal day, I went to CVS hoping to come out with a tube of some magical cream that would clear up my adult acne (the diagnose I’d previously been given). The pharmacist informed me that my prescription required authorization. When he called to get authorization- the dr. instructed him not to fill it and have me come in his office. I thought to my self- “great, he gonna give me the sho nuff good stuff to clear this up”. I made an appointment to see the doctor the next day- never mentioning it to my husband or friends- I wasn’t the least bit concerned. I went to work late so that I could see the doctor and drop my prescription off as soon as possible.
The doctor enter the room and starred straight at my nose [insert gas face right here].

Naked Face- No Makeup- Its hard to see in the pics, but I also have a red bumpy rash

As soon as I noticed the way he was looking at me, I got scared. He began to “drill” me about what been happening to my face. He then said that my face had gotten worse since my last visit and he was concerned. CONCERNED- did he just say he was CONCERNED??? - I obviously knew my face had gotten worse- what started out as one dark spot on my forehead was now covering my nose and had spread to my checks. He did a biopsy on my nose area and took blood. I’m really anxious and nervous at this point. I’d only known people to need a biopsy when they thought they had cancer. That “c” word scares me to no end. I silently cried many days and nights, anxiously awaiting the results.

The nurse called me and asked that I come to the office as soon as possible. My first word was “WHY” what’s the problem?? She wouldn’t say. She only would say that we need to discuss treatment with you- TREATMENT??? TREATMENT FOR WHAT??? Now, I’m shouting and crying at the same time. She still wouldn’t reveal anything to me and advised that I come to the office as soon as possible. I'm sure anyone else would have ran to the office, I didn’t. I did not want to hear that I had cancer. Nope, I was convincing myself and saying Hail Mary as many times as I could over the course of two days. The doctor called me wanting to know why hadn’t I come to the office and when was I coming. (Sigh), I was being a real bitch- I just out right said. LOOK, I'M NOT PAYING YOU A CO PAYMENT FOR YOU TO TELL ME I HAVE CANCER- YOU CAN TELL ME THAT OVER THE PHONE! He said “who told you, you have cancer”? You don’t have cancer- but I need you to come in the office. I’m sure he said more, but I blanked out of the conversation when he said I didn’t have cancer. So I took my lunch break and went by the office. I was calm, cool, and collected- because I thought I had just dodged a death sentence.

As soon as he walked in, I began to apologize for being such a baby and bitch at the same time. He accepted my apology, and sat down, and asked me if I was familiar with Lupus. Lupus?? Ummm……..Not really- why, I asked. He hands me a bunch of pamphlets and goes on to explain to me that I have Lupus. Lupus is a chronic autoimmune disorder that can affect virtually any organ of the body. In lupus, the body's immune system, which normally functions to protect against foreign invaders, becomes hyperactive, forming antibodies that attack normal tissues and organs, including the skin, joints, kidneys, brain, heart, lungs, and blood. Lupus is characterized by periods of illness, called flares, and periods of wellness, or remission. I have Discoid lupus erythematosus, which mainly affects the skin. The symptoms of this form of lupus include a rash on the face, scalp, or elsewhere. The rash may last for days or years, and can recur.

I said okkkkkkkkkk, so what I gotta do to get rid of it? He then said, he can treat the symptoms (from flare ups) but there is no cure. WAIT- STOP THE DAMN PRESS- DID YOU SAY NO CURE?? I rose up outta that chair and honestly I was MAD- the kind of mad, where you’re ready to fight. I’m not sure if I was mad at the doctor, myself, or the world, but I was furious, and I felt betrayed! (I know it doesn’t make sense-but that’s how I felt). After 20 minutes of asking multiple questions and answering questions, and FINALLY having a reason for the shortness of breath, the hot flashes, sweating, headaches, fatigue, anemia, gastrointestinal problems, weight gain/lose, insomnia, bouts with depression, and the skin rashes- it was making sense now. I went home and instantly went to the Internet so that I could educate myself on Lupus- 2 days later my brain was fried and I was full of questions.

I slowly began to tell my family- starting with my husband, my kids, and my siblings. My niece who is a RN, said to me” I knew it, I was waiting on you to say something”. My sister said, she knew something was wrong because of my skin, but nonetheless I was going to be ok. I’m a fighter and I don’t quit. I've been debating whether or not I should tell anyone. Honestly- I was embarrassed. I no longer feel embarrassed or ashamed. I HAVE LUPUS DAMNIT! It's not the scarlet letter, and I will not allow it to take over my life! I’m surrounding myself with other people who are living with Lupus, and educating myself as much as I can on the disease. My blog will now included my battles and victories as Lupus is now a part of life. I’m not going anywhere ya’ll and I’m determined to whip Lupus A$$


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