The real victim: Me… because I don’t have the energy to burn it off.
Bottom line: Steroids give me the craziest cravings.
Posted from the Diva on the road or (most likely) in bed.
As promised, I have been taking 2 GNC Women’s Ultra Mega Energy and Metabolism every morning since my last post (on a side note: I roll my eyes every single time I type-out the full label of this product… ultra AND mega??…really!?!? a little redundant, don’t ya think?). The good news is that I am no longer resisting the pills because of their crappy smell. The trick is to take the pills with a good cup of coffee.
This week, I fulfilled my part-time hours from Monday-Wednesday– a tad exhausting for me. My research team is resubmitting a federal grant so each minute has been intense, with very little time to combat any lupus symptoms that creep-up during the working hours. In addition to the occasional bone-aches, pains and cognitive fog that hit me, I found myself still wanting to pass the BLEEEP-out on my keyboard. HOW IS THAT POSSIBLE?!? I get ample amount of hours of sleep during the night (whether that sleep is actual restful is a different story). I consume coffee like a typical Latina-Faux-Euro-snob (i.e., at 3 hour increments) AND I am swallowing smelly, funky-yellow, ULTRA AND MEGA horse pills that advertise some boost in energy and mental focus. The good news is that I managed to get through the week and completed all my tasks.
Question: Why was I in such a desperate need for sleep during work?
Possible Answer 1: I have lost complete interest in my job… could be that my lupus funk has really gotten to me… I am slowly crawling out of it.
Possible Answer 2: The 7-9 hours of drug-induced sleep that I fall into is not restful. We all know that it is the quality of sleep, not so much the quantity of hours sleeping, that makes a good night’s rest. There is increasing recognition that sleep complaints are common in lupus patients and that the consequences of poor sleep quality leads to fatigue and poor quality of life (Ramsey-Goldman & Rothrock 2010). Up to 80% of lupus patients have complaints of both fatigue and poor sleep quality (Tench et al. 2000). Studies have identified the following to be associated with poor sleep in lupus folks: lack of exercise (…check…), pain (… double check…), depression (… not unlikely considering my lupus funk…), disease activity, sleep-related respiratory disorders, movement disorders, and some lupus treatments, including steroids.
Possible Answer 3: The pills don’t stand a chance against lupus fatigue. Lupus fatigue is such an overpowering force that no energy pill, cups of caffeine, snorts of blow or prayer can resolve it. Let’s not forget that I have been in “the funk”. The best solution for lupus fatigue could possibly be just a good old-fashion nap. Obviously, this is easier said than done, especially when at the workplace fighting a deadline. Check out this great post on lupus fatigue.
This week was tough in keeping my eyelids open. Regardless, I still got the work done (not at the same concentrated pace from last week), which may be the doing of the “ULTRA MEGA” pills. Thus far, I am making the conclusion that these pills do not eliminate but alleviate fatigue. These pills do provide a good dose of Vitamin Bs, Ds and etc, so I am going to continue to keep taking them with hopes that things will be different next work week.
Diva note: Feel free to contact me if you are interested in reading the full articles cited in this post.
As I have mentioned before, I lost my hair due to lupus and its treatments starting in 2010 (click here for details). Many women experience hair-loss at differing degrees because of lupus. For about two years, I rocked my bald head around Houston (with the occasional cover-up on the cooler days or when having a fancy meal).
Rocking this look comes with some great perks… and some lows. The obvious perks include: 1) easy hair management (you shower and GO!), 2) showing off your beautiful face, and 3) showing the world that you have more self-confidence in your pinky-toe than any other long-haired woman around you. The obvious lows…. well… 1) being constantly looked at (which I didn’t mind), 2) being the topic of whispered conversations (“I wonder why she is bald…” etc), and 3) having to deal with ridiculous ignorance and stupidity (seriously, once a jackass came up to me and said: “Are you lesbian?… you have no hair so that means you are a lesbian. You shouldn’t be here.” Let’s just say he walked into my fist, and then walked out with a bloody nose. Somehow, I got banned from the drinking establishment…).
Diva note: Do not allow these lows (especially brought on by other people’s insecurities and ignorance) to bring you down. It is not worth your time or your emotions!
During my time of baldness I followed the words of my hair stylist (if you are in the Houston-area, check out these ladies at A House of Designers— diva-approved) and from my best male friend (who else would know about scalp therapy than a man with a great set of hair–check out thementoringsession): TAKE CARE OF YOUR SCALP!
Sidenote: I tried the steroid injections into the scalp by my dermatologist (a total of 13 into the scalp in one sitting). But after 5 sessions, I was not seeing any results!
I became an advocate of taking care of my scalp. I invested in great shampoos and condition (check out Nioxin products). Monthly, I visited my hairstylist for a buzz-check and for a treatment of Nioxin Scalp Renew Dermabrasion Treatment. This treatment is like a facial for the scalp, can only be done in the salons, and recommended for use every 30-45 days. I recommend also checking out Nioxin Diamax, a leave-on treatment that can be used with the Nioxin 3-part systems for thicker, denser-looking hair.By the beginning of 2012, I have noticed my hair was growing back AND thicker! This is great news even if I still have a bald spot in the back of my head (about the size of a fist). My hair still tends to abandon ship when I am going through a flare. I talk about how to cover these “character” spots in a past post: Methotrexate + Benlysta= ?? On the real, I certainly do miss my no-fuss-hair-less morning routine!
After loosing your hair, you come to realize that you are more courageous in choosing hair styles– because if you don’t like it, you know you can always shave it off and still look fabulous! I was rocking my own personal style with hair– half head shaved while growing out the other side. I loved my ‘do and was certainly the only-one rocking it in the City of Houston (…where the long-haired blondes and brunettes roam…).
While watching E! Fashion Police (a diva-obsession), my auntie Joan Rivers was making a comment about Miley Cyrus’ new do. I couldn’t believe my eyes- that BITCH STOLE MY LOOK!
Damn the man! <Slapping Hand on Forehead> NOW, in addition to receiving the usual “I love your hair” comment, a statement of “It looks like Miley Cyrus” follows!
Which brings me to my quote of the day:
Imitation is the greatest form of flattery! 😉
As we all know, there is no one treatment ([n]or cure) for lupus. How many times have you been asked, “So, there is no cure for that?”. OR how about that frustrated question from your love one as you are unable to move out of bed, “Aren’t you suppose to be getting better by now?” HOW DO YOU RESPOND TO THAT?!? We have all been playing the worst waiting game… Waiting for the right treatment to make us feel an ounce better; Waiting for our quality of life to get back to how it used to be; Waiting to start living our life again.
Lupus requires a trial and error of finding the right medication(s) to help you get to that magical state of “remission”… or at least to a state where you do not feel limited. Yesterday, I had my 11th infusion of Benlysta (I will be hitting the one-year mark in December). In addition to my infusion, I had my monthly visit with Dr. Lupus. While I was waiting for him, I was flipping through his collections of throw-away magazines in the room. I grabbed one and stumbled onto a full-spread advertisement for Benlysta. It featured a happy-looking woman enjoying some social time with family and friends with the phrase: “I am fighting lupus with Benlysta.” I chuckled to myself and threw the magazine (in a passive aggressive manner) back onto the pile. I have been on this magical Benlysta for almost a year… and yet I am still waiting for a better outcome. Yes, I have felt better from 2 years ago… but I have had more than my share of lupus flares and hospital visits. Feeling my frustrations, my doctor agreed that Benlysta-alone was not doing the trick— I have had 2 lupus-related hospital visits in the month of September, become a pill-popper to minimize the pain, and was sitting in front of the man with a temperature of 99.4 degrees. My doctor and I came to a shared decision to a new combination of Benlysta, prednisone and Imuran (azathioprine). This new combo will be sixth attempt to find lupus-relief.
Here is my lupus medication history.
MY TRIAL AND ERROR
Trial #1: Plaquenil (hydroxychloroquine) + Prednisone (duration ~8 months): It takes about 6 months for the effects of this anti-malaria to kick in. Before I can even get this pill in my hands, I had to get an approval from an opthamologist . Why? Because there is small risk (no more than 4% in unmonitored patients) of blindness. Pretty severe adverse effect, eh?
Error: Major muscle weakness. I found myself saying to my doctors, “I feel like my body is too heavy for my legs”.
Trial #2: Methotrexate + Prednisone (duration: ~4 months): I first started by taking the pill-form but had to switch to the injections to alleviate nausea often associated by ingesting the pills.
Error: Respiratory problems, an adverse effect of methotrexate. Saravanan and Kelly (Rheumatology 2006) stated: “As patients become less limited by their joint disease due to treatment, an increasing number report breathlessness as a result of respiratory involvement.” Keep in mind, fans, that I have asthma; so this put me at higher risk.
Error: It was not doing the trick.
Error: Overall, feeling of still-feeling-shitty and the respiratory problems. I felt like I had the flu. After this, it became very clear that methotrexate was not for me. Oddly enough, after I was taken off of methotrexate, I ended up in the hospital for heart and asthma problems. My pulmonologist explained that methotrexate was giving me some protective factor against asthma, and once I had given it up my air sacs decided to act up!
Trial #5: Back to Benlysta + Prednisone
Error: Still feeling shitty
Trial #6: Benlysta + Prednisone + Imuran
Before taking Imuran, your doc will run a genetic test. This is to determine if Imuran is the right drug for you. Certain risks that are associated with this drug are greater in those who have a specific genetic disorder. Your doctor will perform genetic testing prior to starting therapy to determine your risk.
I will keep you posted on my treatment journey… I am crossing my fingers that I will soon finish this damn “trial and error” phase of lupus.
For more info on lupus treatments, check out these two links from:
“Beauty is skin deep and I am in a sh!#-load of pain” -The Diva
WARNING: This blog is dedicated to the ladies of lupus (sorry dudes).
While getting my infusion of Benlysta, I came across an article on allwomenstalk.com entitled “7 Great Make-up Tips for Ladies Undergoing Chemo…“. It made me think: “I wonder how many fabulous chicas in lupus pain look at themselves in the mirror and say ‘Geez, what has this disease done to me?!'” Maybe you haven’t because you are uber-fabulous, but I am going to be honest (and it may seem vain)… I have said those exact words. There have been moments when I look at myself in the mirror and do not even recognize myself. I know I am awesome but there are times where I cannot deny that my body image (defined as an attitude towards one’s body, especially appearance) is somewhat low. I blame lupus. I know I was NO MODEL pre-lupus but I have always loved my body and appearance. I had the attitude of “I can rock ______”, even if to others I looked like a damn fool.
Lupus and Poor Body Image: It is OK to Admit it
Lupus is a multi-systemic disease that mostly affect young women, and it is disfiguring. So it is no surprise that it may affect physical and emotional health. There are several reasons as to why lupus affects our body image… it’s because it affects how our body is looking! Are you on steroids (i.e., prednisone)? Go look in the mirror right now… is your face looking like the typical full-moon character that Disney usually draws up? Or, chew on this: Why is it that I am losing hair on my head but growing a mustache?! How about gaining 5 pounds within a 2-day span (how is that even possible when I barely can keep my food down from all the nausea)?!?! Do you jiggle? I DO.
Disease manifestations, disease activity, lupus treatment-related damage, comorbidities (i.e., other disease that tag along with lupus- osteoporosis, arthritis, renal failure, etc), and medications may adversely affect body image. Skin rashes, uneven pigmentation, vitiligo, scars, loss of teeth, alopecia (i.e., hair loss), facial hair, stretch marks, weight gain, fatigue, pain, depression, unpredictability of flares, or lack of independence all contribute poor body image in women suffering from lupus. This also can affect our quality of life. Although the literature on body image in lupus is scant and controversial, a recent article adds more evidence that body image in lupus patients is poor. If you would like a copy of this article, please contact me.
Younger patients and those with cutaneous disease activity or damage, or depression are more likely to have poor body image-related quality of life. The bottom line is that poor body image is a realistic problem that patients with lupus frequently face (i.e., I AM NOT ALONE… neither are you), and this needs to be addressed through focused research on these specific issues. Of course, body image-related quality of life can be dealt with through some effective interventions, such as cognitive behavioral therapy with a trained therapist (I have one… more to come on that).
How to Not Look Like You are in Miserable Pain
Back to the allwomenstalk.com article that motivated me to pop in two vicodins and type away. Although it addresses the women on chemotherapy (remember methotrexate is a form of chemotherapy), this article gives some tips on how to keep that healthy glow even though you may feel like crap, and some Do’s and Don’ts to make-up. Don’t hate on it just yet… there is some truth to it, and I think the tips can apply to all of us (regardless of the medications we are taking …keep in mind, lupus alone does some silly sh!# to our body).
Although I feel like crap, I have had some people compliment on my skin. I know it is the new skin regimen I adopted once I started to loss my hair. When I was bald, my face was my new money maker. Yes, my hair is back but I have not abandoned the skin routine. This is what I do (in addition to the cardinal rule of keeping your face clean), it isn’t much but I hope it helps:
1. INVEST IN A MOISTURIZER. My skin started to feel dry once I started taking medications and I looked like I aged soooo fast! I know I am 30, but just because I have lupus I do not need to look like I am 55. I do not use a very heavy moisturizer because I did not want to induce a bigger acne breakout. Not only was my skin super dry, but there are days where my skin was an oily mess, a la puberty-years. There is no reasoning to it. So, I opt to use a gel-cream from Garnier “Moisture Rescue- Refreshing Gel Cream”. For the really dry days, I use Philosophy “Take a Deep Breath”. This gel-cream is oil-free AND it helps calm those morning red-blotches.
2. JOIN THE BB CREAM TREND. IT IS WORTH IT! BB creams are suddenly everywhere… and there is a reason. BB stands for “Beauty Balm” or “Blemish Balm” depending on the formula, and they’re basically tinted moisturizers with skin care ingredients and SPF built in. The last thing you want to do to disguise the fact that you are feeling like caca is to pile on a bunch of make-up… then you start looking like a woman who looks flu-ridden and should be working a pole. The major plus of a BB cream is that in one bottle you have just the right amount of coverage, moisturizer AND sunscreen. We all know how important sunscreen is to us!! Basically, a BB cream is a tinted moisturizer with a little kick and extra benefits. The tinted moisturizer helps even-out my skin tone, even during those random occasions when the redness and uneven pigmentation conquers my face. My first BB cream was from Garnier, because it was $12.99 and I wanted to see what the big hype was about. Once I joined the bandwagon, I went to Sephora and bought Smashbox’s BB cream. Smashbox is best known for its primers. Their version is fragrance-free (unlike most of the others), so it’s ideal if you’re allergic or sensitive to fragrances. It feels fantastic going on and looks great even at the end of a long, hot Houston day. I can be sweaty but still have a fresh face.
3. BRONZER/BLUSH the Color Back in. This is probably common sense. The use of bronzer will add some glow and life back to your pale skin. A light-hand will give just the right touch of sun-kiss that is needed.
Fans, please don’t forget that despite the weight-gain, hair-loss, and other-body altering stuff that lupus does to us, we will always be fabulous. Why? Because we are strong enough to go through and SURPASS something that the majority cannot even imagine. And we do it with a smile.