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
A friend sent this to me, and it suddenly occurred to me how suggestive the names of the characters from Sesame Street and The Muppets are if you think of them as members of a hardcore street gang.
Imagine a neighborhood riddled with drugs and violence, and then picture characters called Kermit The Frog, Miss Piggy, Big Bird, Oscar The Grouch, Gonzo, The Cookie Monster, Animal.
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.