Courtesy of my night stand and smartphone
Posted from the Diva on the road or (most likely) in bed.
I am baaaack. Where have I been? No where spectacular and not in rehab. I am going to be honest and spill some raw truth– I was in a psychologically-dark place. A place where I looked forward to my next pill-induced coma so that I can be numb to EVERYTHING.
From November to December, I have been feeling the what I can only describe as the “lupus funk“, and as time went on, the funk got funkier. I was depressed. Overall, I just felt shitty with myself and my situation. Every since I was diagnosed with lupus, it has been a battle- not only was my health failing but it had affected every aspect of my life. Because of lupus: 1) I had to move-in with my parents, 2) every move I make has to be supervised, 3) I am in bed by 7pm only to wake up in the middle of the night with pain, 4) I am always exhausted, 5) I can no longer drive, 6) all my money goes to medical bills, and 7) I am socially dead to the world, and etc. etc. etc. And to top it off, I still had to try to keep myself out of a hospital. I am sorry to have to admit this, fans, but I wanted to give up. I was tired of fighting and tired of smiling with hope so that others around can be assured that “everything will be OK”.
And that is why I have been absent for a good chunk of time. The reason I started this blog was to provide support and encouragement to my fellow warriors. I was certainly NOT in the state of mind for dishing out sunshine and rainbows (I couldn’t even queen out properly!), and therefore, refrained from writing. If I had written during my months of depression, it would have looked very similar to the chapters of a Judy Blume novel, a la Are You There God? It’s Me, Margaret. (*If you do not understand that reference, look it up, or you can trust I made a reference that was simultaneously brilliant and hilarious!*) My head was one hot-mess; not only was I blue, I was in a constant fog of confusion. I did the blog-community a service by sitting out for awhile.
So, why am I writing now? Easy- I feel psychologically more stable and do not have urges to swallow a cocktail of yummy drugs for reasons other than pain-control. I have been seeing a therapist on a weekly basis so that I can cry and have realizations. Plus, I hear fabulous people have therapists. 😉 (Diva approved) I realized at the beginning of this year that:
1) I lost 2 months of precious time. We all know that lupus does not come with the gift of time. As lupus patients we are constantly told of the many “chances of this happening” or a “risk of that happening”. I was a baby who focused on the negative and spent all her time in bed feeling sorry for herself. Not the way to go.
2) I am still lucky– even with lupus. I have the best support system in my family, true friends, and my fellow lupus warriors. AND even after the crap year of 2012, I am still able to take a breath and stand on my own feet (with a little help from a member of my support system or cane).
The point-of-the-story is not to have pity-party in my honor because there are people who have it so much worse than I do. I am fortunate enough to be able to write this down. I write this awful truth in hopes that if you are in a “dark funky place”, you are not alone and have every reason to be depressed. Up to 60% of lupus patients will experience clinical depression, which is most likely the result of the continuous series of emotional and psychological stressors associated with living with a chronic disease. Helplessness and hopelessness are two common feelings associated with depression. Also, keep in mind that lupus flares can trigger depression. Just remember, that there are many resources out there to help you and that you are not alone.
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.
There is not ONE pill for lupus; there are many! Rarely will you find two lupus patients that share the exact same drug regimen, Why? Because we do not share the same symptoms. Lupus is a complex disease. Many of the drugs we are prescribed are the same drugs that are prescribed for other disease, including arthritis, cancer, and etc. Major case in point: being prescribed Plaquenil — an ANTI-MALARIA drug!
I came across this article from Arthritis Today that gives a great description of the popular drugs prescribed to control lupus. You can sign up for email alerts and receive some great information that is endorsed by the Arthritis Foundation.
Today, I have copied and pasted the “Biologic” portion by Donna Rae Siegfried. This was compiled with the Arthritis audience in mind, so I have included some lupus-friendly information in the right place.
BIOLOGICS: (By Donna Rae Siegfried)
[Diva note: Benlysta falls in the biologic category]
What are biologics?
In general, biologics are genetically engineered medication made from a living organism, such as a virus, gene or protein, and then used to treat a problem occurring in a different organism, such as a human. Vaccines are one type of biologic agent. In contrast, other drugs are synthesized chemicals.
What conditions do biologics treat?
Because the biologics block triggers of inflammation, they are used to treat autoimmune forms of arthritis, such as rheumatoid arthritis (RA), juvenile idiopathic arthritis (JIA), ankylosing spondylitis or psoriasis/psoriatic arthritis. Inflammation is the result of the immune system’s errant attack on the body’s tissues, causing joint pain and destruction, as well as other systemic effects, such as fatigue and heart and lung damage. Some biologics approved for rheumatoid arthritis are approved for, or are in development for, other conditions, ranging from Crohn’s disease to cancer.
How are biologics used?
Some biologics are used after a patient has “failed,” or not responded adequately to, traditional disease-modifying anti-rheumatic drugs (DMARDs) or other biologics. When a biologic drug is used for treatment, it is used often in combination with a traditional DMARD, such as methotrexate, for greater effectiveness.
Will biologics cure RA or other conditions?
Unfortunately, no! But the biologics, which work for about two-thirds of people who have rheumatoid arthritis, can induce remission in most people who respond favorably. A clinical remission is defined as fewer than 15 minutes of morning stiffness, and no tender or swollen joints for at least three months. Treating rheumatoid arthritis and other inflammatory forms of arthritis aggressively with DMARDs, including biologics, as soon as possible after diagnosis increases the chance of remission, as well as minimizes the risk of limited function due to permanent joint destruction.
Why can’t two biologics be taken together?
Biologics and other DMARDs decrease inflammation and disease activity by impairing the immune system’s activity. But suppress the immune system too much, and an overwhelming infection could take hold. Limited studies suggest that taking two biologics at the same time would increase the risk of infection markedly, without an increase in therapeutic benefit.
Why are biologics so expensive?
The materials required to create these agents are more expensive, and the manufacturing processes using live organisms are more complex than are required for traditional chemical pharmaceuticals. Other factors include the high cost of research and development.
All of the current biologics are still under patent protection. After a traditional drug patent expires (20 years from the date the company applies for it), other companies can produce generic versions that cost less.
It’s not clear yet how generic biologics – frequently called “follow-on biologics” – will be handled. The unique process of producing copies of biologic agents presents issues of consistency, as well as proof of safety and effectiveness. The U.S. Food and Drug Administration (FDA) currently has no authority to approve a follow-on biologic for the marketplace, but there are bills in Congress to change this.
Why can’t biologics be taken in pill form?
The biologics currently approved by the FDA must be injected or infused (that is, given intravenously) because they are made up of large protein molecules that cannot be absorbed if taken orally. Seven oral rheumatoid arthritis drugs made from small molecules are now in early stages of development and testing.
Do all biologics work the same way?
Although the goal of biologics is the same – to stop damaging inflammation – they interrupt the complex cascade of cellular events that drive inflammation at different stages. Belimumab (Benlysta) blocks different inflammatory proteins than does the RA-biologics. Belimumab is a human monoclonal antibody that inhibits a protein necessary for the maturation of B-lymphocytes, cells involved in the autoimmune response that underlies lupus. Rituximab (Rituxan), another lupus-biologic hopeful, stops the activation of a certain type of white blood cell called B cells. It was originally approved to treat tumors, then rheumatoid arthritis, and most recently vasculitis. Evidence thus far is mixed regarding its use as a treatment for lupus (and lupus nephritis). Although randomized clinical trials (gold standard of evidence) have not found it to be superior to standard regimens, there are many signs that it may be effective [Appel GB. Clevel Clin J Med 2012– contact me if you would like to see full article]. For both of these biologics, the theory is the same: With fewer B cells, the overactivity of the immune system decreases.
On the horizon: Abatacept (Orenicia), a “co-stimulation” blocker, is undergoing clinical trials in lupus nephritis. Results shuold be available shortly.
Diva note: Overall, biologics are a serious drug, and not for everyone! The decision to take it requires: 1) a balancing act of the risks and benefits AND consideration of all factors (i.e., cost, convenience, risks and overall potential benefit), 2) making sure these medication characteristics are in alignment with your preferences, 3) a good talk with your doctor, and 4) good adherence strategy– remember to do your part as a patient. Doctors can only do so much for us.
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:
Excuse Me- I am Still Standing
I let lupus get the best of me! AGAIN! I hate to admit this but for the past 3 months, I have been in hiding and nothing, not even a huge bottle of CYMBALTA, could get me out of the dumps. I had lost my DIVA-ATTITUDE! You want to know why? Because, Lupus sucks the big ONE. I am so over this disease. Let me share my tale of terror.
FIRST, I had to come to the following as a 30-something-year-old woman: 1) I can no longer live alone and had to move-in with my parents, 2) I can no longer drive… people of Houston were in danger, 3) I can no longer work a full 50-hour work week, and 4) OPIOID DEPENDENT. If that wasn’t pyschologically-ball-busting enough, my body decided to join the fun. In addition to fighting off daily-minute-by-minute pain, brittle bones, and trying to function with a crappy-central nervous system, I come to realize that my kidneys have thrown in the towel and my ovaries felt the need to funk out (aka premature ovary failure. Now my 60-year-old tia and I can bitch about hot flashes together, and I can gain 5lbs by looking at a cupcake). Soon I will be telling tales of the diva with lupus nephritis. Surprisingly, my liver is still holding on by a string. Apparently, all that training of binge drinking and drug use I put it through during my younger years paid off. On top of that, I have been exhausted and fatigued because my lone-leukocyte from my non-existent immune system (thank you, Benlysta) has been fighting infections left and right, including urine, respiratory and folliculitus (infection of the hair follicles– lame).
Of course, I still had to deal with life. And I may have not done such a great job with dealing with it. I had responsibilities like: going to work, submitting a grant, doing maid-of-honor stuff for my friend (the bride-to-be), and still try to maintain my composure. AND people still wanted me to be social and attend birthday dinners and game night?!?! YOU HAVE GOT TO BE KIDDING ME! What I really wanted to do was: Tell my boss to go to hell, NOT submit the grant that won’t get funded because of some political reason, tell my friend that I could care LESS about her bachelorette weekend and that she could shove her royal-wedding theme bridal shower (her idea) up her small ass, and crawl into bed with two-handfuls of vicodin and Norco. HOW DARE YOU?!?
WHEW! There you have it fans, I just queened out.
All of this was physically and emotionally exhausting- which induces flares. I am confident that everything will be OK. I trust that I am in good hands with Dr. Lupus and I have tremendous support from my family and my close friends. These are the guys that are always there, even when I feel like shit. They get it. So, why am I sharing this story? I do not share my stories for your sympathy or your “I’m sorry”. Because, I am not sorry. I am grateful for this experience. I am realizing more about myself and others through this process. I am actually lucky.. VERY LUCKY. I am grateful to even be breathing and able to type this out to school my fans. 😉
Take your pen and paper out, fans. Because here is your lesson that you will never forget. If you are able to blink and take a breath, you are STILL STANDING.
I tell myself the following phrase everyday:
I have everything within me to conquer the world.
Now, I may do it at a slower pace, but DAMNIT I will do it. It sounds lame, fans, but we can do it. Do not let lupus (or anyone else) bring you down.
The DIVA is back and this is a turning point in my journey and I am looking forward it.
“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.