Courtesy of my night stand and smartphone
Posted from the Diva on the road or (most likely) in bed.
On Friday, January 25, 2013, an advisory panel to the U.S. Food and Drug Administration voted 19 to 10 to recommend moving hydrocodone combination drugs, such as Vicodin, Lortab, and Norco to the schedule II category of controlled substances. If the FDA follows the panel’s recommendation and moves hydrocodone combination drugs from their current schedule III to schedule II, prescribing practices would be more restricted. … [original article here]
Like many of you, I deal with pain on a 24/7 basis. When I am talking, laughing, smiling, or queening out, believe it or not, I am in pain. Here is an inside scope on those who live with pain— we have a high tolerance to it and we are incredibly strong. It is only when the pain is so unbearable that you can see it on our face.
Now each person has their own way of coping with daily pain. Many do the healthy-living (i.e., eating well, doing yoga, etc–check out these great posts). Overall, the majority try to keep themselves occupied so to not focus on the pain. What do I do? I keep my mind busy with some activity (i.e., work, watching some sitcom marathon on some ridiculous network [thank you, CLOO for the 3-day Psych marathon!!]) AND I rely heavily on my drugs, especially my precious Norco (hyrdrocodone/acetaminophen)– the cooler, pot-smoking cousin of Vicodin. Dr. Lupus prescribed a 180-count per month prescription, and I am expected to take one-pill every 4 to 6 hours. But as we all may have experienced, pain is not a uniform symptom. I have good days that I can take my 1-pill every 4 hours. But most likely, I will have days where I am taking 2-3 pills as needed (i.e., whenever I feel like it to keep my sanity). Why? Because- WHEN IN PAIN, I NEED MORE THAN JUST ONE MEASLY PILL TO QUIET THE PAIN. I have been taking Norco for over 3 years now. At first taste, one pill did the trick, but as time went by, I was needing more and more. Taking hydrocodone is a vicious cycle- because users can form a tolerance towards these opiate drugs, which means you need more of it to have an effect. Personally, I am OK with that. As you read this, you are probably thinking that I have a major dependence on the drug. If you don’t think that, well, keep reading, because if I haven’t convinced you yet… I think I will do a stand-up job in the next couple of paragraphs.
Before I left the office today, I received an email notification that my prescription was ready for pick-up. Just as I was reading it, I smiled, swallowed the last four Norco pills and made a mental note to stop the pharmacy before crashing into my bed. Perfect timing. You see, after 3+ years of experience with the Texas Controlled Substance Act, I have picked-up a few tips and managed to never be without opiates and always with a “comfortable” supply (for those bad days). One day, I will disclose those tips. Unfortunately, during the past month, I had to dip into my “Norco” savings, and by dipping, I mean DIVING IN. I left nothing (oops). So, I was desperately relying on today’s pick-up.
At my neighborhood pharmacy, of which my hard-earned funds go to, I was told “it is too soon” to pick-up my Norco prescription and to “come back on April 4th”. I decided to not panic right away and pleasantly state that there may be a mistake because I was notified via email that my prescription was ready. Now, the following is the dialogue that occurred at the Walgreen’s Pharmacy in Sugar Land, Texas. Because I am so talented, I played the role of the classy diva, sarcastic diva, raving queen, and Diva Licious Jones (my tranny name).
The silly pharmacist continues to speak with me with some stick up her ass: “Did you take more than what you were suppose to?”
Classy Diva: “Fuck yes I did, how else am I able to walk, stand and have this heated conversation with you about my painkillers?”
Crap-pharmacist: “You are allotted 4-6 pills a day for pain”
Sarcastic Diva: “Oh sorry. Let me give that message to my body that is being attacked by its own immune system. I am sure it didn’t get the memo.”
Pharmacist: “The controlled substance law states…”
Raving-Queen: “I am going to stop you there. How about this. Why don’t you go get hit by a truck, or get cancer, or suffer from some painful disease like arthritis or lupus, and then, tell me if you give a damn what the controlled substance law says. It is OK, I will wait.”
Dumb-bitch who still doesn’t get it: “There is no need for that. You are just going to have to come back in 7 days. You will not get your painkillers”
Diva Licious Jones: “That is where you are wrong” [pulls the around-the-world-snap and struts out of Walgreen’s] *side bar- I strutted like a true diva but that shit hurt*
What was my next move. PANIC! First, I called my fellow-lupus warrior to bitch about what had happened and to see if I could bum a few painkillers. Second, I called my long-time buddy-past-lover/druggie to score drugs off the streets. How dare that pharmacist refuse my drugs! She was clueless to say that I would not get them today. I know it is possible to score outside the pharmacy, because the older classy ladies at my infusion clinic speak of this all the time. For fuck-sake, I buy weed from a 68-year-old diva (gotta love the pain-community)! So, I left my sure-thing-slam-dunk-move for last. I called in the same prescription at the Walgreen’s in the neighboring town… AND WON! #Rulesweremadetobebroken.
What is the bottom-line? Am I dependent on opiates? Maybe. Will I do anything to have a steady stash? Hell Yes. Like I said before, each person has their own way of coping with pain. I don’t judge anyone for eating grass, going to acupuncture, smoking pot, drinking pure lemon juice or etc.
Here is your Diva’s Note: I think at this point, fans, we need to do what makes us happy AND feel good. We just have to remember that every action has a consequence. I will smoke a doobie, sprinkle Norco on my ice cream, and drink glasses of vino until I can peacefully pass-out pain-free. We already go through so much that no one would ever understand, so why not make the most of it?
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.
Experiencing hair-loss because of xx medicine or xx disease? I have touched on this topic several times (check out: this, this and this). It has been two years since I shaved my head, and to be honest, I would do it again! Being bald was an eye-opening experience and a life-changing event for me (the diva pre-lupus was lame!). But I do looove my hair. Although I have come a looong way and have enough hair to style (I use a hair dryer!), I still tackle bald spots on a daily basis. If you are in the same boat as me (i.e., have enough hair to go without a wig or scarf), let me elaborate on some options you can use as a cover-up:
1. Make friends with your hairdresser. Explain your situation and have him/her give you a cut/style that helps with your cover-up. It is amazing what a good style can do for you. My hair is styled with longer layers around the bald spot– so that I can use the Donald Trump move of swooping hair over the spot, without looking cheesy.
2. Joan Rivers Great Hair Day: My auntie, Joan Rivers ;), came up with a great product to give the illusion of thick full hair, hide hair loss, thinning hair, bald spots & root growth. This product comes in three shades: blonde, brunette, and salt and pepper (although I have seen shades for red-heads). This is a powder that dulls your shin y bald spots, therefore, giving the illusion of thicker hair. The powder comes in a compact, which includes a mirror and brush applicator for easy application. You can use the non-brush end of the applicator to separate your hair strands to expose the bald-spot, then you simply brush on the powder to the spot. It is very easy to use and is great for an easy cover-up. FYI: Running behind on your hair color maintenance? This product works for root-touch-ups. Diva tip: Although this product will not smear, I recommend hair-spraying the blotted areas for extra staying power.
Pros: Easy to use and on the cheap (no more than $19.99). Works great for smaller cover-ups. Can order from online retailers (QVC, etc) or from retail stores, such as Bed, Bath & Beyond.
Cons: If you are trying to hide a larger-than-dime-size bald spot, consider using the options below. When I used this powder for larger areas, it looked like I painted on my scalp.
The new wave of cover-ups has arrived. Hair fibers are one-step ahead of the powders and spray-on bottles, by giving the illusion of hair strands on your bald spot. The problem with powders and sprays is that, when applied to larger areas, it looks like you colored your scalp. These hair fibers give dimension– you are literally applying hair to your bald spot. Hair fibers cling to your existing hair strands for a great blend. These fibers hold on for dear life and stay on until you shampoo your hair. These products are sold in salons and come in a variety of colors to match you. I have used both the Kamo and XFusion fibers, and they both do the job. No more worrying about exposing your bald spot– you have more important things to think about!
How to apply: USE ON DRY HAIR ONLY! You do not want a wet clumpy hairy mess on your hands. Style your hair as usual (i.e., apply all products needed). Find your spot, and shake on the fibers. Gently pat to disperse the fibers. Again, I recommend, hair spraying the area for extra staying power.
Pros: Easy to use and quicker than brushing on powder. Your cover-up will not look like a cover-up.
Cons: Cost is higher but you are paying for what you get. Kamo fibers are exclusively sold at Visible Changes in Texas only. 😦 XFusion fibers seem to more widely available, and you may order online.
It is unfortunate that we are young and have to experience with issues, such as hair loss, however, it does not have to beat us down. Luckily, there are options and products we can use to make the issue disappear for a moment. Jiggly women (i.e., ME) use SPANX all the time… why not use these cover-ups to give another illusion? The great thing is that you are still able to rock your hair and show-off your great personality. If you have any more cover-up suggestions, please feel free to add to the list!
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.
Diva’s Energy Crisis Log– Day 10.
I am going to be blatantly honest. For the past week, I have been in what I am calling a “Lupus Funk“. You may have experienced this before; it is that feeling of annoying-achy all-over pain with a dash of dull headache pain and sufferings of fatigue and fogginess (we all know how difficult thinking and focusing can be while in the state of the lupus fog). Blinking even hurts. Motivation is killed by the lupus funk. Overall, this funk makes you want to just stay in bed and avoid any human contact (dogs seems to be bearable).
On the days that I had to force myself to work, I pinched my nose and swallowed the GNC Women’s Ultra Mega Energy and Metabolism multivitamin with hopes that they would get me through the day of dealing with my crazy boss. Although I left work still thinking my boss was crazy, the pills were able to give me that energy boost to survive the work day even in the state of my lupus funk. In other words, they make dealing with the day easier when in such a crappy state, but they do not alleviate the funk symptoms. I still feel funky, but at least the pills give me the energy to get out of bed and conquer the tasks at-hand.
My biggest complaint about the pills is the SMELL! Yes, I am being dramatic. This smell has restrained me from taking my daily-twos on a daily basis. Everytime I open that bottle, I regress to a child resisting to take that horrible-tasting cough syrup (…remember those days??). However, I do notice a difference in the days that start with smelly pills versus those that don’t. The main difference is that more shit gets done when I take the pills (no surprise there). So all I need is somethng to motivate me to take them every day…
I am still not 100% obsessed with this pills just yet. I will continue to take these (on a daily basis) and report to you.
Posted from the Diva on the road
It is Day 2. So, here’s a short-and-sweet update on my progress to resolving my energy crisis. These horse-pills have joined my morning pill-swallowing routine. I take 2 of these a day (recommended dose):
1. Pills smell FUUUUUNKY. The funk punches me in the face as soon as I open the bottle. I would rather be in a room filled with dirty baby diapers covered in sewage (Yes, the smell is that bad.).
2. These pills taste as funky as they smell and induce my gag reflexes (go ahead and insert your dirty joke here).
3. Energy boost is noticeable. Yesterday was my first work-day with these smelly pills in my sysyem. I arrived to a desk covered in multiple projects that had to be done by that day. While reviewing my task list, I thought it would be easier to run a marathon in heels while torturing myself to the music of One Direction and Taylor Swift. Somehow, I came out as a winner and finished all my tasks– AND still had enough energy to stay out of bed until 10pm to work on my personal projects!! Either I was lucky or these pills actually work. But I’m not drawing any conclusions just yet. It is only Day 2.
Stay tune and stay FABULOUS.
Posted from the Diva on the road
As many as 80 percent of people with lupus experience fatigue. –Lupus Foundation of America
What is your biggest complaint of lupus? Pain? Lupus fog? Fatigue? All are crappy symptoms that we must deal with daily–sometimes gracefully and not-so-gracefully at other times. Today, I plan to queen out about FATIGUE. Lately, my conversations have been going something like this:
Regular female: Hi! How are you? How are you feeling?
Diva: I’m OK (lying through my teeth).
Regular female: Well, you cannot believe the day I had! I blah blah blah blah, and then blah blah blah. So, do you want to join the girls and I to do stupid-girl things? I plan on spending 2 hours in getting ready, so to lure a shady man to buy one drink for me. And then, I am going to hopelessly fall in instant love with him- because he buys me that one drink- but then, I will be super upset because he will never call. Are you sure you are OK? You look a little beat.
Diva: Yes, I am fine (lying through teeth). I am a little tired (lying through teeth… full exhaustion and headache setting in) so I am just going to call it a night and drug myself to sleep. Have fun tonight (rolling eyes).
After dealing with fatigue for who-knows-how-long, it finally dawns on me:
Ladies and Gentlemen, we have an ENERGY CRISIS on our hands!
An energy crisis is any great bottleneck (or price rise) in the supply of energy resources to an economy. -from the experts at Wikipedia 😉 (…i have no idea what this means…)
Fatigue is no stranger to me, and it has become a blasted-barrier in my life. I have tried several recommendations to help win against fatigue, but I still find myself fighting that battle. Here are some easy tips from the Lupus Foundation of America:
Tips to Help You Manage Fatigue
Because of lupus and its adorable symptoms (i.e., including extreme fatigue), I have cut down from full-time to part-time status at work. Fatigue has really affected my productivity at work, and performing 150% 5 days a week was becoming less and less doable. Today on my day off, I proposed a plan to resolve My energy crisis. Before revealing my plan, let me break down my day to demonstrate the amount of thought and detail that went to such a logical plan.
1. Opened eyes from a 12-hour coma and crawled out of bed at 11 am (don’t judge it was my day-off) still feeling exhausted.
2. Perform my daily rituals of coffee, steroids, pain-killers, vitamins, and dulce de leche on a slice of toast (very Argentine of me ;))
3. Realized that I had a prescription of Norco (a painkiller) ready for me at the pharmacy. This was enough motivation for me to get out of bed… Showered at 1 pm. (again- don’t you dare judge!)
4. While at pharmacy, stumbled onto the vitamin and supplement aisle and noticed the following product: GNC Women’s Ultra Mega Energy and Metabolism Multivitamin. These timed-release caplets provide a gradual release of vital nutrients.
5. I read the product information:
Clinically studied multivitamin
In a randomized, double-blind, placebo-controlled study of 112 healthy volunteers, subjects taking the GNC vitamin and mineral blend in this product for six weeks experienced statistically significant improvements in markers of B vitamin and antioxidant status, as well as improvements in SF-36 Vitality and Mental Health scores compared to those taking a placebo
Advanced Nutritional Support
Calorie Burning Support
*These statements have not been evaluated by the Food and Drug Administration. This product is not intended to diagnose, treat, cure, or prevent any disease
5. Decided to give these pills a try. I am in need of vitamin B and D supplements and will benefit from the extra boost of energy (and metabolism– this diva is getting jiggggggly). Also, I would not mind the boost in mental focus.
6. Swallowed one (2 pills are recommended per day) at 4:30 pm. I already noticed one thing: these pills smell funny.
7. Today marks Day 1/2 of resolving my energy crisis with this multivitamin supplement. I plan on tracking my status every 2-3 days.
I know what you are thinking… “Diva, you sure thought this through.”
Fans, don’t be too jealous of my well-laid-out plan (haha!). I did make a note in my trusty notebook about my new purchase, because I will be visiting with Dr. Lupus on Friday and want to make sure he knows of my new plan to resolve my energy crisis.
Diva note: Always tell your doc of all the medications (including vitamins) that you put into your body.
Stay Tuned… AND
Lupus fog — the forgetfulness and fuzzy-headed feeling that can come with lupus (systemic lupus erythematosus, or SLE) – can be one of the most frustrating symptoms of the condition. –R. Morgan Griffin
Check out this video of some lupus peeps talking lupus fog. The group discussion is led by Christine Miserandino, founder of ButYouDontLookSick.com. Check it out: http://lupus.webmd.com/community-tv-lupus-11/default.htm?vid=vd-1916-extv-0011. Don’t have time to watch? Click here for the transcript.
Diva Recommendation #1: Follow Christine on Twitter and receive “spoonie” updates @bydls.
Diva Recommendation #2: If you have a chronic disease, you should definitely read up on The Spoon Theory. It is a great concept and gives a great illustration of the limitations we, as patients, face on a daily basis. When I was first diagnosed and performing countless anxiety-driven web searches, I found this theory to be helpful and nerve-relaxing.