Beauty is skin deep

“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.

Stay fabulous.

 

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Methotrexate + Benlysta = ??

Methotrexate, developed to fight cancer, is known as the “gold standard” — the best drug — for the treatment of rheumatoid arthritis. It has also been shown to be very effective in treating skin lesions, arthritis, and pleuritis in people with lupus. Belimumab (Benlysta) is used with other medications to treat people with certain types of systemic lupus erythematosus. Belimumab is in a class of medications called monoclonal antibodies. It works by blocking the activity of a certain protein in people with SLE.

Again, I awake on a Sunday morning thinking:

What day is it?!?

1) What day is it?

2) How long was I asleep? and

3) What did I do on Saturday?

As I had mentioned before in a prior post, infusions of Benlysta alone was not enough to control the monster that is lupus. This is common,  as many patients are taking Benlysta in combination of some other lupus-regimen. For these patients, including myself, lupus seems to be too aggressive for just one treatment (i.e., monotherapy). For my case, Dr. Lupus put me back on the weekly, injectable methotrexate regimen in combination of the monthly Benlysta infusions (i.e., dual therapy). After several weeks of no improvement, my methotrexate dose was increased.  The results? It is too soon to tell, as improvements usually are first seen in 3-6 weeks. The full benefit of this drug may not be seen until after 12 weeks of treatment.

Although I may not (yet) be able to notice the benefit, I have noticed some of the lovely side effects that come with methotrexate: 1) nausea, 2) slight hair-loss, and 3) FATIGUE. A little nausea is expected with methotrexate, but there are some actions that can be taken to reduce this. First, if the stomach issues are really bothersome, switching from pill- to injectable-dose can reduce these issues. I originally was prescribed the pill-form of methotrexate but suffered with crazy nausea and vomiting. Plus, my appetite decreased with the pill-form (side-note: not a great thing! I am a lady who loves to eat!). Once these concerns were expressed to Dr. Lupus, I was handed a syringe and bottle (along with some lessons on how to poke myself properly).

What about the hair-loss?Well, it isn’t too bad. I should mention that losing a couple of strands is not bad in comparison to once being bald. I do have to practice the art of “cover-up” as part of my morning routine. Due to the crazy Houston heat and humidity, I have ditched the wigs. My options have been 1) tying a scarf, 2) applying the fabulous and dependable Joan Rivers Beauty Great Hair Day fill-in powder (brush included when purchased), or 3) Kamo hair fibers (literally small hair fibers that camouflage for full-looking hair).  Different from lupus-induced hair loss, hair loss from methotrexate use does come back. Just give it some time.

Fatigue is the number one side effect of Methotrexate.

Sunday morning-ish

FATIGUE— what provoked me to write today. I take my weekly shots of methotrexate on Friday evenings. Its amazing how my body knows it is time for the weekly injection, because I am hurting Friday mornings and throughout the day. Like a druggie, all I can think of is getting home to shoot myself up with this poison (really- the color of this liquid is Mountain Dew yellow…). A couple of hours after my injection, I am exhausted and fall into my bed. I only emerge from my cave of a bedroom until the following Sunday. That’s right- all of Saturday is GONE! Yes, I am a tad frustrated– only because I am still a single-thirty-year-old who wants to have fun, especially on a Saturday. My weekend routine has become a huge lonely sleep-fest with the occasional web-browsing to have some connection to the outside world. And, of course on Sunday, I check on Facebook and Twitter to see what  kind of dumb trouble my friends got into– and I do judge them ;).

Balancing the drug risks and benefits… while factoring in side-effects, nuisances, convenience, and quality of life

THE DIFFICULT MATH EQUATION OF LIVING WITH LUPUS (or any chronic disease that requires treatment): We all know that pill we swallow, that injection we take in, or that liquid that we watch dripped and infused into our body via IV has a risk-of-something. Those risks, severe or not, have to be balanced by US, the patient, with the potential benefits. So, when do we say NO MORE to the drug that is potentially there to help us? Well, that is on an individual basis. We each have our own preference and we each need to voice that preference. We, as patients, need to know the answer to the difficult math equation:

When do the drug risks and side effects outweigh the benefit of treatment and our quality of life?  

Remember, to include those other factors that may weigh your decision- costs, convenience, nuisance… etc. These factors will differ for every person. Unfortunately, I don’t have the answer to everyone’s equation… I am just barely figuring out mine. For instance, the equation I face is the following: How do I balance pain-relief to quality of life? In other words, is the potential pain-relief worth me losing a Saturday? I will know the answers once I start seeing the benefits… but for now I don’t mind getting to spend one-day in bed while my body is getting its fix. And to be quite honest, I feel better on this Sunday.