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!

Just Say No

… 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.

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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.
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Stay FABULOUS and say NO

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Vero and me (December 2012)

Diva-Worthy Song of the Day No. 4

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.

Stay Fabulous

Catching up

It doesn’t matter what you have or what you look like, everyone has to work at being confident.

I have been a horrible entertainer– I have been taking too long of an absence from sharing my stories. Although there is no excuse, I have been on a pendulum where my health has not been stable! Instead of recording my events during my free time, I have been living in my bed and popping pills with hopes the next is better. It is too bad that work gets in the way of me getting better. So for now, let me spit out a list of events that will satisfy two things: 1) Give you a sense of the stuff I have been going through, a need to come back to read the full scoop and perhaps give you the chuckle you needed today and 2) Function as a to-do-list of blogs for me to write within the next couple of weeks (yup- lupus CNS/fog has gotten the best of me and I have no memory).

Let me try to do this in chronological order:

1. Feel like crap
2. Dr. Lupus decides to put me on a dual-therapy lupus regimen of Benlysta and Methotrexate because the Benlysta alone is not doing the trick
3. There is a shortage for methotrexate serum (for injections)
4. I get tattoo #6 (first tat while a lupus patient) in dedication to my lupus fight and survived it
5. Discovered a new product, other than Joan Rivers’ product, to cover-up those couple of stubborn bald spots– Kamofibers.com
6. Met a man who seemed to understand and accept what I was going through (who I shall now refer to as Mr. Pibe)
7. Dr. Lupus gives me a guilt trip when he found tat #6… my immediate excuse: “I don’t even know how that got there!! I just woke up and it was there… must be a new lupus skin reaction…”
7. Man took me to one of my infusions and took care of me afterwards… how sweeeeeeeetttt
8. The phrase “Lupus Nephritis” enters into the conversation between Dr. Lupus and I
9. High blood pressure…
10. Feeling crappy and decided start a pain diary
11. Work is becoming a dread and harder to do. Co-workers and management are starting to notice…
12. Realize that I can’t just leave work because I need the health insurance coverage
13. Mr. Pibe becomes an ass and “has too much on his plate…”
14. I get tat #7… which needs about 5 sessions to finish… also dedicated to lupus. Pictures coming soon!
15. Want to stay in bed but don’t because I have the most amazing support system that keeps me ALIVE.
16. Played the MegaMillions… and lost
17. Getting psyched about the upcoming 2012 LUPUS NOW Walk– May 6 in Houston, TX. Join or donate to TEAM UNBREAKABLE.
18. I am the maid of honor for my best friend’s wedding
19. Put in two federal research grants… with more to come in the summer.
20. STILL CLASSY AND FABULOUS despite it all!

Stay tuned and take of yourself.

Posted from the Diva on the road

What Did Lupus Take Away?

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For about 6 months I have been seeing a therapist to help cope with the changes that lupus brings. I am able to be raw and queen out freely in her office. Plus, fabulous people have therapists. I recommend this to anyone! My therapist has helped me not only to cope with lupus but to accept it. Before the end of 2011, I sat down with my therapist. After an hour of me queening out, she wrapped up the session by giving me “homework” in a form of a question to ponder for our next session. She acknowledged that I was angry, frustrated and upset to have such a disease at a somewhat young age, then she asked me: “What did lupus take away from you? I want you to make a list of these things and grieve the lost. ”

So, here are 10 things from my list that lupus took away from me:

1. The sun. I miss being tan (I am latin!), the beach adventures, poolside with a drink and laughing at men get silly drunk trying to impress the women in bikinis
2. My energy. I used to be able to conquer it all. My day would consist of me going to work for 10 hours, have dinner and drinks with friends, grad school work, and then eventually sleep. I used to say, “I will sleep when I am dead”. I never used to say, “I am sorry but I am going to have to pass because I am too fudging tired.” Now I have a bed-time equivalent to that of an 80 year-old.
3. Physical activities: Dancing, walking up stairs, going to the park with my dogs, late-night Guitar Hero, typing without having to rub my hands after every other keystroke, standing for long periods, sitting for long periods, laying down for long periods…
4. High heels.
5. Ability to multi-task, ability to focus, ability to think clearly. My CNS inflammation and lupus fog… enough said.
6. Strutting. I had a natural strut … a diva’s strut that demanded attention.
7. My hair.
8. Weekends filled with crazy festivities and after hours
9. Social life
10. My independence- to depend on so many to help me through the day.

So, fans let’s grieve our lost together. What is on your list?

Don’t worry fans- of course, during my next session my therapist asked me to make a list of the things that lupus gave me. Stay tuned- you don’t want miss out!

Posted from the Diva on the road

L’Shana Tova

L’Shana Tova!!! Wishing all a great and HEALTHY year.

Remember my fellow lupus patients:

“If you don’t like something change it. If you can’t change it, change your attitude. Don’t complain”  – Maya Angelou

It is that time of year again, Rosh Hashanah, the Jewish New Year. I am out celebrating- but will be back very soon to continue my story (yes, it is the real truth 🙂). As my dear friend reminds me: “So, you know you have to be extra good for the next 10 days…” Yikes! Looks like I need to review what being good is… 

Want to learn more? Click here: http://www.washingtonpost.com/blogs/guest-voices/post/rosh-hashanah-ettiquite-guide/2011/09/27/gIQA8JrM4K_blog.html

In the meanwhile, please enjoy: