Let Go My Norco

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?

STAY FABULOUS!

Lupus Treatments: Trial and Error… and Patience

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.

…Just waiting…

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.

Trial #3: Benlysta + Prednisone (duration: ~2 months): I have previously talked about my journey with Benlysta. Go ahead… take a look at the past posts.

Error: It was not doing the trick.

Trial #4: Benlysta + Methotrexate + Prednisone (duration: ~3 months): I have talked about this as well. Go ahead… take a look. :)

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:

Lupus Foundation of America

Mayo Clinic

Stay Fabulous!

Insert Creative Title Here: Benlysta and Common Side-Effects

I started my first Benlysta infusion late December 2011.  I just had my 7th infusion yesterday afternoon along with my monthly visit with the GREAT Dr. Lupus.  Today, I am feeling the “what- is-becoming” my normal after-poking side effects. Although it took awhile (yes… I am a bit dumb and slow at times), I think I am finally at a place where I can predict how I will feel after an infusion. You would think that the day following infusion is all sunshines and butterflies.   WELL IT ISN’T, DAMNIT! This IS the time when you will most likely notice the common drug side-effects, including:

  • Nausea
  • Diarrhea
  • Fever
  • Stuffy or runny nose
  • Sore throat
  • Cough (bronchitis)
  • Trouble sleeping
  • Leg or arm pain
  • Headache (migraine)
  • Urinary tract infection
  • Decreased white blood cell count (leukopenia)
  • Vomiting
  • Stomach pain

I have experienced most of these side-effects post-infusion (except leukopenia) at least once, twice or thrice.  Those that are highlighted above are the ones that have become part of my day-after-infusion routine.

Let me elaborate: As soon as I came home from my infusion, I crashed into what-I-hoped was-my-bed and did not wake up until 7 hours later… at 1 am! I still receive Benadryl pre-treatment with my infusion because I am a geeky-glasses-wearing-allergic.  Although I do not fall victim to the Benadryl’s sleeping spell during my treatment, I later become tired and silly-loopy as soon as I sit in the passenger side while a family member drives me home. My poor father was victim to my slurred, idiotic conversations regarding unicorns and cheeseburgers. After I climbed out of my mini-coma at 1 am, I checked my phone and saw that I sent some silly texts in my drugged haze (similar to those drunk texts that we are all too familiar with…). This is when I come to notice that during my haze I made an attempt to become a literary genius. I can’t make this up, nor do I have any shame…. This is an example of a text I sent last night: “Hey Faaagina  [obviously sounding out vagina] I need to blow so that I can grow”.  There you have it, fans, go ahead– judge me. Don’t Text Post-Infusion!

Kids don’t Infuse and Text!

Of course, I had trouble going back to sleep after waking at 1am. During my tossing and turning, I decided to welcome stomach pain and headache into the mix. ;) When I did finally get to sleep, it was very light and unrestful.  I stumbled out of bed this morning and experienced the greatest combo o f leg and arm pain along with vomiting. Try rushing to a toilet when you can’t move your own damn legs.  It takes skills and talent. But I made it to work this morning… and on time. At this very moment, I am still experiencing arm and leg pain (on the right side) and a little of the “drugged” feeling (a la lupus fog). But I am still here and making it happen… one step at a time (baby steps)!

SIDE NOTE:

I think I am starting to see a little, teeny benefit from my combo of Benlysta and methotrexate (yay!). I expressed this with Dr. Lupus (“Hey doc, I don’t think I am getting worse!”) and we are going to continue the course… so I am crossing my fingers that I am making my way to the light at the end of the tunnel.

 

Stay Fabulous!

Smoking the Pain Away

Adios Pain. Hellllo Cheetos. (Prettied-up by The Diva)

Many of us were offered a hit. While some may have said “No thanks. I have fill in blank for excuse,” some of us tried it and coughed up a lung. As the others laughed at the consequence of your first puff, you hold in the smoke, inspect the object within your fingers, and either shake your head in disgust or nod your head with a grin. After that first time, a few of us (who grinned) returned to claim a cushion of an old sofa (or an old futon or floor space or fold-out chair on the balcony) and performed the classic ritual of puff-puff-and-pass while watching Cheech and Chong’s “Up in Smoke” or an episode of Family Guy. If you are chuckling at this very moment, then one of two things can be assumed, 1) I am f*#cking hilarious or 2) you were (are??) a stoner.

Today, on April 20, I dedicate my post to the use of weed. Your first time hearing 420? Check out this all-you-need-to-know about 420 by Boston.com. (Note: If you want to know the history and philosophy, then go ask that dude who still wears the tie-dye T-shirt with Hemp sandals, and is home during the day):
  • WHO CELEBRATES: Anyone who is a pothead. Of course, college students roam free on some grassy field. Other devout-users, who happen to have a job, will take a vacation-day. I know someone who is thirty-something and never takes a day off– EXCEPT on April 20th of every year.
  • WHAT DOES IT MEAN: Of course the origin of 420 is shady. Some sources say it was a code for marijuana spread among California-pot users in the 1960s and spread nationwide among followers of the Grateful Dead. There is even legend that says that 420 was once police code in Southern California to denote marijuana use.
  • FUN FACT 1: Today in Austin, Texas, country music legend and an open devout-user, Willie Nelson, helped unveil an 8-foot statue of himself in downtown Austin at 4:20 p.m. local time.
  • HOW MANY STATES HAVE LEGALIZED MEDICAL MARIJUANA? Sixteen states (starting with California in 1996) now allow the use of medicinal marijuana.
  • REMINDER: Marijuana use, sale and possession are STILL illegal under federal law.
  • FUN FACT 2: Archaeologists have identified fibers from cannabis stems in specimens dating back to 4000 BC, and its incorporation into textiles and paper was found in the tombs of the Chinese Han dynasty (∼100 BC) (Zuardi AW. Rev Bras Psiquiatr 2006).
  • FUN FACT 3: I am high-as-a-kite as I am writing this. (go ahead… catch all the mistakes and typos within this post)

So, other than joining all the other bloggers’ attempt to get some attention on April 20, why do I dedicate a post to this? 

Fellow lupus warriors, do you remember that first time when you described your intense pain to an outsider? Unless that person was made out of coal, he/she empathized with you, and immediately tried to help you find a solution. Remember those first couple of suggestions?

“Have you ever… um… tried smoking weed to deal with the pain? [sometimes followed with] I know a guy…”

We have all been asked. We have all researched it. We have all considered it. Many websites are dedicated with the use of marijuana and lupus. What does the medical research say? Using my research skills for some good, I performed a medical literature search on the topic– using the search terms “cannabis” and “lupus”– one article from 1998 comes up. A result of 148 articles come up when I broaden my search (using the terms “cannabis” and “chronic pain”). In summary: The analgesic effects of smoking weed remain controversial. That really doesn’t stop anyone, a (under)reported 10-15% of patients with non-cancer pain still light up a doobie (Ware MA, Doyle CR, Woods R, et al. Pain 2003).

Why Mary Jane to Treat the Pain?: The first record of cannabis as a medicine can be found in the oldest Chinese pharmacopeia, written in AD 25 to AD 220, which was indicated for rheumatic pain, malaria, constipation, and disorders of the female reproductive system (Touw M. J Psychoactive Drugs 1981). Without going through all the pharmacological mechanism on the nervous system, let me just say there is a biological plausibility for smoking to reduce pain.

Does it Work?: Based on personal experience, HELL YES IT DOES. But it is no miracle drug, just like all good things in life (i.e., vicodin), the effects do not last long nor are they powerful. Smoking dulls the pain and puts me at ease. Also, smoking helped solve my appetite-loss and nausea associated with beginning uses of methotrexate.

When Do I Light Up?: Not everyday. I am not going to lie, when I first got my hands on marijuana, I  would light up every night. Sounds fun, eh? EXCEPT I started to realize that the effects were faaaaaaading away fast. In other words, the potency of smoking weakened with every light. Similar to other painkillers, I became use to its effects and more was needed to dull the pain. Also, lighting up everyday did not work well with my lupus CNS. Marijuana can cause multiple psychmotor symptoms, including impairment of cognition and memory. I already experience foggy-moments, shakes, memory loss and etc… I certainly did not want to intensify these symptoms! Currently, I save my joints for those special occasions. You know- those days when you are at the point of tears from the pain and frustrated with the situation. On those special days, I hobble to the balcony and “take a breath.”

Why the Doctors Are Not Handing You a Joint with Your Painkiller Prescription: Weed/cannabis/mary jane/pot is recognized as a substance with a high potential for dependence, which occurs in 1 out of 10 people of anyone who takes a puff. It can lead to behaviors of preoccupation, compulsion, reinforcement, and withdrawal after chronic use (Dragt S et al. Can J Psychiatry 2010). Smoking can also cause some other bad things to happen to users, especially the first-comers. So, it just comes down to balancing the risks and benefits. The potential risks are known and the benefits are not that great to trump the risks (boooooo!!!).

You thinking about it? I believe we should try anything once, how else will we know if we like it or if it even works. USE CAUTION! Tell your doctor that you are using. There is no shame in being open about it when using for pain treatment. Get your dose from someone dependable— NOT from your friend’s, friend’s sister’s ex-boyfriend’s roommate. As with any new treatment, use your common sense and don’t be dumb.

Enjoy 420. Light up, take it easy and zone-out, lupus warriors. I leave you with three of my favorite smoking songs:

BE FABULOUS!

Painkillers and smiles

If I didn’t need the drugs so badly, I would sale them to you.

As I was popping my pills freely, including my beloved vicodin, among dudes, one asked the common question with a sly smile: “Can I have a vicodin? I will pay anything.” I looked at my white oval pill with such love and desire. I thought to myself, “I could spare one and make a couple of bucks.” But then, I thought of the moral implications- ‘Tis wrong for thee to share prescriptions amongst comrades’- plus, it is apparently illegal (minor detail). I looked at the dude, who was desperately still trying to hold onto his early twenties (and deny his thirties) by wearing a backwards cap, and said with a polite smile, “Fudge No!!!” (Ps I don’t say fudge…). It is then I realize that the Houston’s streets would be safe from my medicine cabinet. Lupus patients would never become drug dealers… we almost enjoy the drugs (i.e. powerful painkillers) too much…. and we can’t live without them!

image

Enjoy your prescribed painkiller… maybe sprinkle it over ice cream, cupcakes, be creative. Enjoy that moment of haze, forget why you are even taking it and smile.

Posted from the Diva on the road

Stories of a pimp cane

More than 90% of SLE patients will experience joint and/or muscle pain at some time during their illness. 

“It is not uncommon for people with lupus to experience muscle aches and pain (myalgias) or have inflammation of certain muscle groups (myositis), which causes weakness and loss of strength. More than 90 percent of people with SLE will experience joint and/or muscle pain at some time during the course of their illness. Muscle aches and pain may be from symptoms that happen when your body is responding to some type of inflammation, from muscle atrophy (weakness), or from a true myositis. Some people with lupus develop myositis, an inflammation of the skeletal muscles that causes weakness and loss of strength. Lupus myositis often affects the muscles of your neck, pelvis, thighs, shoulders, and upper arms; difficulty in climbing stairs and getting up from a chair are early symptoms. Later symptoms may include difficulty lifting objects onto a shelf, lifting your arm to comb or brush your hair, getting out of the bath, and even raising your head or turning over in bed.”

I have a pimp cane. I am 30 and I have a pimp cane- a leopard-print cane that helps me get around and with STYLE. I know there are many in my position…. too young to be using a mobility aid. I tried to research stats regarding how many of us are out there but could not find anything, but that does not mean it is of insignificance prevalence. In addition to my muscle and joint pains, Dr. Lupus has the pleasure of treating my muscle weakness (the fancy term- myositis). Somedays, my legs will pass a  message to me that they are on break (or on occassions go on strike), giving me the impression that I am too heavy for them (On the real: I am not going to deny that I have put on a couple of pounds since the initiaion of my steroid therapy and the lack of movement caused by pain and weakness does not make me any skinnier… as I eat a full plate of tex-mex in my bed). BUT how dare my legs suggest that I am toooooo overweight! It is on these days that I pop in a Mintos (I substitute Mintos with Vicodin) and look to my trusty cane. As soon as I grip onto that handle, something comes over me. It is like I gain super powers and a new attitude- an attitude beyond my typical diva-ish ways-one that is similar to the famous character Dr. House. For those who have never heard of this fictional character- shame on you! This character paralells the greatness of Sherlock Holmes. I’m not going to rant about House, as I am pretty sure there is a blog dedicated to the show and the character (now I am curious to know… let me know if you find one). Here is the point of this blog, I turn into a Vicodin-, steroid-, meloxicam-popping, bitter, moody curmudgeon with a triple dose of wittiness when holding my walking cane (aka pimp stick). But, honey, why are you so bitter when using the cane (you may ask)? Here’s my answer: Because I am in pain and I can :-) .

Are you using a pimp stick? Here are the top 5 pimp stick activities that will make all non-users jealous:
5. Poking people to get their attention instead of using your voice.

4. Sitting on a park bench and enjoying the day while tripping joggers.

3. Shaking cane angrily and possibly yelling “You wipper-snapper!”- this is an ultimate form of expression.

2. Cane-wars: an old-fashion artform among two sophisticated opponents who have an argument to settle. (Sophicated is defined by one who uses cane). cane wars pics on Sodahead

1.  Causing pure disruption. This video explains it all: