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6 Months of Living with Lupus

The Lupie Chick

Wow, where did the time go? It has been 6 months since my lupus diagnosis. I had a doctor appointment Tuesday, and I was informed that I’m stable- not getting any worse, but thus far not any better. No reduction of the meds (bummer), next appointment Jan 4, 2012.

As I reflect on the past 6 months-it brings tears to my eyes. I’ve have several short stays in the hospital, many days/nights of pain, and depression. There were days when all I could do was cry.. ball up in my bed and cry. I see my doctor so often that I feel like we are dating. I know I’m a handful and I know I work his nerves. I’m always full of questions and comments. I just tell him straight- I can’t afford to do all of the things you want me to do! I know it sounds crazy that someone/anyone would say that they can’t afford to do something that may benefit them-BUT I can’t! I’ve made adjustment to my benefits at work (starting with getting the flexible spending account) in which I hope will help me financially with some of the things I need to incorporate. In the mean time, I’m doing the best I can with what I have. It has been extremely difficult for me to accept help. I’ve always been the care giver- not the one being cared for. I find myself ashamed of my appearance (because of the weight gain from the meds along with the scarring on my face). Ive had trouble with housekeeping and cooking meals sometimes-but THANKS to my children and my husband all of which have pitched in and got the job done when I couldn’t.

Some friends have hung in there with me and a lot have fallen by the wayside. That saying “out of sight out of mind “pops into my head. As long as I’m out of sight, I guess I don’t cross their mind(s). The other day my son’s step mother sent me a message on Facebook that said “you’re a fighter- I know firsthand” lol..lol.. That sentence made me laugh uncontrollably. The people that I least expect to hear from are the people that I’m in contact with. The people whom I thought didn’t care about me, have showed the most concern. For that I’m forever grateful.

November 20th my daughter turned 13 years old. Crazy me thought it would be a great idea to have a 3 day (weekend) celebration.

Pretty Girls Rock Party started Friday at 3:30pm and ended Sunday at 6:00pm. All I can say is a weekend of cupcakes, makeup, swimming, food, and dancing left me slaved to my bed for 5 days. I literally could not move. I had a conversation with my body and Lupus. I told them- “look I need for the both of you to cooperate and lean back this weekend. My mini me turns 13 once and I need to be there for her-if either of you act up, or show off there will be hell to pay!!!!!” My feet gave out Sunday afternoon, but all else was perfect!!!!! My daughter was so happy that I was able to participate and hang with the “girls” all weekend.

It’s been 6 months of living with Lupus. I’m determined to make the next 6 months much more enjoyable & pain free. I’m being forced to face one of my fears (water). It’s been demanded (by my doctor) that I begin an exercise regimen. It’s hard to imagine exercising when I’m in constant pain. I’m looking into water aerobics (to help with my joints) and yoga. I have an incredible fear of water (due to a childhood incident when I almost drowned).

I’m hoping that I can get back to wearing my stiletto’s shoes,walking without pain and leave the sneakers for workouts-not part of my daily uniform. I want to wear makeup when I want too-not because I feel like I have too (I’ve recently purchased the clarisonic brush-I’m already seeing results). I will also be doing a makeup over-a do over- a NEW ME!!!!!! So until next time Lupie Chicks-stay healthy and pain free!


** did you notice that my earrings match my jacket? I wrapped them myself using yarn**

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The Lupus Diet

The Lupie Chick

While surfing the web yesterday for my post Eat this… Dont eat that! I came across a site titled
“Can Lupus, and Lupus Hair Loss be Tamed with a Lupus Diet?”. I found this to be very interesting (1.) I have Lupus and have never heard of a Lupus diet, and (2.) My hair is falling out 😦

As I began to read the article, I was happy to see that a specific listing of foods was provided to help boost the immune system. I was never one to count calories nor could I rattle off the top of my head what food are enriched in specific vitamins (outside of the obvious- vitamin C- oranges, etc). So the list with specific foods, I found to be very helpful. After yesterdays posting, I was feeling like there werent anything I could eat- and I was hungry. With the list below I now feel like I have options!

Top 10 immune system boosters include, which supply the highest levels of these nutrients, are beets, shiitake mushrooms, avocado, curly kale, grapefruit, blueberry, brazil nuts, soy beans, green tea and garlic.

Other top immune boosters include sweet potatoes, carrots, onions, garlic, yams, red bell peppers, tomatoes, rhubarb, pumpkin, chili peppers, avocados.

Cruciferous vegetables, watercress, nettle, spinach, Belgian endive, globe artichokes, arugula, kiwi, pineapple, papayas, mangoes, guava, cantaloupe, passion fruits, citrus fruits, bananas, grapes, berries, rosehips, hazelnuts, apples.

Endive, walnuts, cashews, almonds, pistachio nuts, sunflower and pumpkin seeds, safflower oil, evening primrose oil, sesame seed and oil, aduki beans, oats, wheat germ, quinona, bulgur, rice, corn, kidney beans, lima beans, green beans, lentils, snow peas, turkey, pheasant, duck, chicken, fresh tuna, salmon, anchovy, mackerel.

Shrimp, yogurt, peppermint, chamomile, rosemary, ginger and turmeric. These foods all contain an abundance of nutrients with antioxidant, immune restoring or anti-inflammatory properties.

I realize I have to get serious about what I put in my body. What amounts are safe and just because I like it, dont mean it ok to eat it. I know all things in moderation is best- but my eating habits are CRAPPY- some things I have and will let go COLD TURKEY!

3 Objectives of The Lupus Diet

Proper diet is required not only for people with Lupus but there are some special considerations when it comes to Lupus dieting. There are three objectives of the diet and these are to counteract steroid therapy, to stock up on your potassium, and to replace the nutrients that you have lost. for you to be able to reach these objectives here are some information that you will have to keep in mind.

Control your fat Intake
For the Lupus diet, you have to control your fat intake. The omega-3 fatty acids that are found in fish oils are also proven to lessen your risk of encountering coronary artery diseases. this Lupus diet is very important to those who are high risk for these certain conditions such as women with Lupus, or those who have hereditary tendencies.

Recommended Vitamins And which to Avoid
Taking in supplements when you are in a Lupus diet should not be done without consulting with your physician. There are certain vitamins that are not recommended for you since these will worsen your condition such as Vitamin a which can exacerbate autoimmunity and Vitamin E which will induce the remission of Lupus. on the other hand, there are helpful vitamins too such as Vitamin D which helps in managing osteoporosis, Vitamin B12 and folic acid that treat some forms of anemia. Herbal supplements too should not be taken without a doctor’s prescription, since there are some that are totally restricted for you.

The food Avoid
Alfalfa is one of the foods that should be totally avoided in a Lupus diet since this one can trigger symptoms that are Lupus-like or more commonly referred to as Lupus flares. these Lupus flares induced by alfalfa can be fatigue and muscle pain, blood test result abnormalities, nephritic problems and changes with how the immune system functions. Researches have found out that L-canavanine, an amino acid that is found in alfalfa activates the immune system, and can aggravate inflammation. Not all Lupus symptoms can be eliminated but many symptoms can be controlled to at least have a normal live.

If you have tried the Lupus Diet- comment and let me know how it worked-or didnt work or you.

Related Articles:

Can Lupus, and Lupus Hair Loss be Tamed with a Lupus Diet?

Lupus Diet – How to Make Your Lupus Symptoms Better

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 healthcare 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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Am I Being a Baby or a B*tch

The Lupie Chick

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… Point…Blank…Period.com

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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Coping with Lupus Headaches

The Lupie Chick



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* lol…lol

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 (lol..lol..)are my triggers . If you have any advice- please share ….

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Lupie Emotional Roller Coaster

The Lupie Chick

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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Hello-I’m a Lupie Chick

The Lupie Chick
Repost
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.

UPDATE: Initially I was diagnosed with Discord Lupus, I have since been diagnosed with Systemic Lupus. I now see Dr. Michele Petri  affliated with John Hopkins Hospital in Baltimore, MD. My dermatologist is Dr. Valerie Callender, who has 27 years experience treating individuals with Lupus

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$$
Disclaimer: NONE OF YA’LL BETTER NOT START TREATING ME LIKE I’M SICK, OR WE WILL BE BEEFING!!!!!! Love ya much!!!!!

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