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?
A message from the Lupus Research Institute
Urge Your Senators Now To Protect
The Future of America’s Biomedical Research
We urge the lupus community to send a strong and immediate message to the U.S. Senate to support an amendment to the Senate Budget Resolution that would increase funding for NIH research in the coming year.
Between today and the weekend, the U.S. Senate is expected to take a final vote on its Fiscal Year 2014 budget resolution. At some point in the debate, the Senate will consider an amendment by Senator Jerry Moran (R-KS) to increase funding for biomedical research funded by the National Institutes of Health (NIH). The Moran Amendment would increase NIH funding by $1.4 billion – strengthening the agency’s capacity to fund the research necessary to deliver new treatments and find cures for lupus as well as the many other chronic diseases plaguing so many Americans.
Please help and express your support for Senator Moran’s Amendment by either telephoning or emailing your Senator today or tomorrow. Urge your Senators to vote for the Moran NIH Amendment to the budget resolution.
Here is a summary of the Moran Amendment from his office for your reference:
Funding for the NIH, the focal point of our nation’s medical research, has remained virtually level since FY2010. However, when adjusting for inflation, the FY2012 budget is $3.6 billion lower than the peak year of FY2003. Success rates for grants have fallen more than 13.6 percent in the past decade and the NIH is projected to fund 3,000 fewer grants this year than it did ten years ago.
If the United States is to continue its leadership role in providing the medical breakthroughs to develop cures and treat disease, we must commit to supporting funding for biomedical research. If researchers cannot rely on consistent support from Congress, we will jeopardize our current progress, stunt our nation’s global competitiveness, and lose a generation of young researchers to other careers and other countries.
Only through steady, sustainable, and predictable funding can the NIH sustain the highest quality biomedical research to help improve the health of all Americans. In addition, the NIH plays a critical role as an economic engine, supporting approximately half a million jobs nationwide. Our commitment to the NIH will remain an important factor in saving and improving lives, bolstering the nation’s economy and driving U.S. global competitiveness.
Diva’s note: Political beliefs aside, research is the only route to discovering ideal treatments for lupus. We, as patients, have a chance to be proactive and get involved.
Posted from the Diva on the road or (most likely) in bed.
“… just remember that only we know what we’re going through each day. We need to do what’s best for us, not what others want us to do.”
Beautifully said by my fellow-fabulous-lupus warrior, Vero. She reminded me today that it is OK to say “no” in order to stay healthy and happy.
The Lupus Foundation of America recently published a nice article on saying “no” so that we don’t overwhelm ourselves with life: http://www.lupus.org/webmodules/webarticlesnet/templates/new_magazineback.aspx?articleid=3009&zoneid=67
Fans, remember that you are your number one priority. We must take it easy and one step at a time. Lupus is a life-changing chronic disease. Anyone who says differently obviously hasn’t been catatonic with pain. We have to accept it and start making the necessary changes so we can live everyday to its fullest.
Stay FABULOUS and say NO
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!
Not a day goes by without seeing an E-card created by Someecards. Out of pure curiosity (and for a need for some funny), I searched for “lupus” e-cards and this is what I found:
Giggling, yet? Spread the joy.
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.