POP- Put on Purple

Research shows most Americans know little or nothing about lupus and its devastating impact on millions of people. You can change that! Put on Purple and tell people why it’s important to raise awareness of lupus and show support for those who suffer from it. BAND TOGETHER for lupus awareness and help the Lupus Foundation of America (LFA) fight this unpredictable and sometimes fatal disease.” –Lupus Foundation of America

Get your purple ready for May 18.

WE CANNOT DO IT ALONE— we need your support!

Join the thousands of people nationwide for Put on Purple (POP) on Friday, May 18, 2012. 

It’s super easy to participate:

1. Wear purple proudly on MAY 18 and don’t you dare be afraid to tell people why!

2. Spread the word! Tell your friends, family, coworkers, employer about PUT ON PURPLE and FORCE them to join you.

3. Consider organizing an office-wide or company-wide participation.

4. Take pictures of your participation and share them with others:

For more information and details, click here: http://www.lupus.org/newsite/pages/Put-On-Purple.html

Let the count down begin!

Be Fabulous! Tell your story and change lives. 

Diva-Worthy Song of the Day: No. 2

Gallery

Divas are naturally known for that unpredictable, roller coaster of emotions. What easier way to express our adorable attitudes, then by the magic of music? For those lupus-induced frustrating mornings, remember this: “Do what you, what you want You don’t … Continue reading

BE A SUPERHERO

Join the Superheroes of TEAM UNBREAKABLE

 Do you live in the Houston Area? Ever wanted to visit Houston? Mark you calendars– Houston is the place to be on MAY 6. As we do it BIG (a la TEXAS STYLE) for our version of the 2012 Walk and Run for LUPUS NOW.

What better team to join than the fabulous and famous,TEAM UNBREAKABLE? We are all about bringing the party to any situation (plus this will be your chance to meet THE DIVA in her purple tutu). Most importantly:

We are UNBREAKABLE in our spirit; UNBREAKABLE in our faith (that things will get better), and UNBREAKABLE in our hope (that one day there will be a cure).

JOIN NOW AND BE A SUPERHERO! 

Want to join the fun on May 6? Click here: http://2012walkforlupusnowhouston.kintera.org/faf/search/searchTeamPart.asp?ievent=1000485&lis=1&kntae1000485=4B71976FB7484BA0A44838977731E369&team=4920310

Can’t make out on May 6? You can still help with the fight and donate! Click here: http://2012walkforlupusnowhouston.kintera.org/faf/donorReg/donorPledge.asp?ievent=1000485&lis=1&kntae1000485=4B71976FB7484BA0A44838977731E369&supId=320053016

BE 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!

To Ink or Not to Ink??

“There are no specific problems that have been associated with tattoos in lupus patients. Keep in mind the small risk of infection with hepatitis B and C. Occasionally lupus patients have been known to have a reaction to the tattoo dye but this is very rare. Remember, if you are on immunosuppressive medication, this may increase the chances of infection and slow healing of the tattoo area. As with other procedures, it is best done when you are in remission or a welled controlled mild disease state. Consult with your physician prior to getting your tattoo.” —Wise words from the Lupus Foundation of America

It was a regular Saturday early evening. I am in the passenger seat of a big, Texas-style truck (the typical ones you see in all Texas-related commercials). Driving the roaring beast was my dear friend and fellow lupus warrior, Vero. We were two runaways sneaking off towards a town southeast of Houston to the thing that lupus patients are not recommended to do. We were on our way to get inked.

My obsessions with tattoos started as a young Jewish, latina– translation it was never (and still not) accepted by los viejos (e.g., elders). It was a big NO-NO. Tattoos were a big “estas loca!” mentality. I had my first tattoo experience in college when I finally had a design in mind and accomplished what I had identified as a “big event”. I survived college (literally.. there were many mornings when I thought “how the f&*# did I get here?!?”).  Anyways, pre-lupus I had accumulated 5 tattoos with no thoughts of stopping.

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TAT #5 on the rib... ouch

Of course, with the diagnosis of lupus I had worries that my so-called “body mutilation” (as my parents and Dr. Lupus call it) days were over… Fast-forward a couple days before that Saturday evening, Vero and I are discussing a lively topic of “things we should do in 2012”. And you guessed it, my dear fans, getting tattoos dedicated to our batte with lupus was on that list! So, on that lovely Saturday evening, we visit the one-and-only man who can ink my body, Mr. Bill Greenman. For our first lupus-dedicated tattoo, Vero and I decided to get butterflies… and we lived through it.

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Vero's Butterfly on upper mid-back (right on the spinal cord!)

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My Butterfly nicely placed under tat #3

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“This is wanted pain. I paid for this pain” – Vero

WANT TO GET A TAT?
What to expect (here is another one of my famous lists):
1. Do not even dare of getting inked if you do not feel your best. In lupus terms, reschedule your session if you are having a bad, lupus day. You know when you are not feeling your best; listen to your body and bow-out gracefully if necessary.  Do not even think of going to get inked on the day of or day after your methotrexate, Benlysta, or other lupus-treatment intake. Take your steriods HOURS before the session. Are you on anticoagulants (i.e., blood thinners)?? Guess what– you will be bleeding a waterfall with one prick… and maybe you should consider on doing something else to express yourself (e.g.., dye your hair, etc).
2. Pain is not that bad- Consider this, you are in pain 24/7 so you are most likely use to the induced-pain. Taking some tylenol, NSAID, or etc obviously helps… see point #4.
3. Eat before going- You are putting your body through some stress when getting inked, therefore, you will need all the nutritional support. Consider on bringing a little treat to the parlor, just in case you feel light-headed during the session. Passing-out during a session can happen to the best of us, so having a little sugar near-by can help you get through that.
4. What about the painkillers? I am not going to avoid this question. We as lupus patients have access to the best painkillers. I am not going to lie to you, dear fans, I popped in a vicodin pre-session. This eased some of the pain of sitting still for a period of time, and of course, the pain associated with getting inked.
5. Inform your tat artist that you have lupus. He may not know what medically means, but tell him that you are a little more sensitive compared to the average-Joe.
6. When the tat artist is about to take a break from your piece, ask him/her to spray it down with some Bactine (it helps soothe the skin a bit while giving you that anti-bacterial proctection).
7. Post-session: FOLLOW ALL CARE INSTRUCTIONS provided by your artist. This is for your protection, as you know, you are more at risk of picking up any kind of infection.
8. Expect heavy bruising as you heal. Remember, fellow lupus warriors, we bruise so eeasily.  Go ahead, look at your legs, I bet you have some kind of bruise from that “bump” you made with the coffee table. Post-tat, my arm looked like it went through some heavy beating, and technically it did.
9. Aquaphor (or something similar) + Bactine (or something similar) are your best friends.
10. Healing will take longer. Keep caring for it as your body heals, it is worth the wait.

*I shouldn’t have to include the following into my above-list: DO NOT GO TO SOME SHADY-ASS, DIRTY TATTOO PARLOR. Just like you check-up on your doctor and medications- DO YOUR RESEARCH BEFORE GETTING INKED! If you go to some shady place, you might as well have gotten your tattoo in prison.

WHY DID WE DO IT?
I don’t want to speak on behalf of my beloved, fellow warrior, Vero, but I wanted to know that I could still get inked. Also, there was a control issue… I wanted, for once, to have control over my pain. Yes, I paid for it $$, and yes, everyone who cares for you will be little upset that you put your body through that stress (i.e., Dr. Lupus gave me the greatest lecture/guilt trip EVER when he found my new work). But, to be honest, there was some feeling of accomplishment when Mr. Greenman was working on my piece. I think often when we are in pain and popping pills to try to silence it, we become frustrated; not only because that damn pain never really goes away, but it reminds of us how lupus can take some control away from us.

Vero and I have continued to express our fight through the art of tattoo. Vero is on the path of getting this amazing wolf tattoo on her lower back (near the kidneys) to express her struggle with kidney failure and the continued fight with lupus nephritis.

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The wolf that attack Vero's kidneys

As for me, I have gone through 3 sessions of a leg tattoo to express my love and hate with lupus. I chose to have the Phoenix depict how I rose from the ashes as a new person with new perspectives with my struggle with lupus.

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Phase 2 of the Phoenix Tat on upper left thigh

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Phase 3 of the Phoenix

Now dear fans, I am not saying you should go out and get inked to show your fight. What I am suggesting is to do what you can to take back some of that control that lupus robbed from you. Want to breathe in the ocean waves? Drive to the beach, lather yourself in sunscreen, wear that floppy hat, sport those designer sunglasses and be that diva sitting underneath the umbrella. Want to share your lupus war stories?  Join your local chapter of a lupus support group (i.e., Lupus Foundation, Lupus Research Institute, etc), start tweeting, or better yet, start a blog.  No one is ever going to know what you are going through, but many can relate and many want to hear your story.

Do you have a tattoo dedicated to your fight with lupus or in memory of someone who is fighting or fought with lupus? Don’t be shy and share the art. 

 I look forward to seeing them.

Be Fabulous!

Posted from the Diva on the road

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