Welcome Back- Tales from the Dark

welcome-back-kotter-10

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.

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!

Methotrexate + Benlysta = ??

Methotrexate, developed to fight cancer, is known as the “gold standard” — the best drug — for the treatment of rheumatoid arthritis. It has also been shown to be very effective in treating skin lesions, arthritis, and pleuritis in people with lupus. Belimumab (Benlysta) is used with other medications to treat people with certain types of systemic lupus erythematosus. Belimumab is in a class of medications called monoclonal antibodies. It works by blocking the activity of a certain protein in people with SLE.

Again, I awake on a Sunday morning thinking:

What day is it?!?

1) What day is it?

2) How long was I asleep? and

3) What did I do on Saturday?

As I had mentioned before in a prior post, infusions of Benlysta alone was not enough to control the monster that is lupus. This is common,  as many patients are taking Benlysta in combination of some other lupus-regimen. For these patients, including myself, lupus seems to be too aggressive for just one treatment (i.e., monotherapy). For my case, Dr. Lupus put me back on the weekly, injectable methotrexate regimen in combination of the monthly Benlysta infusions (i.e., dual therapy). After several weeks of no improvement, my methotrexate dose was increased.  The results? It is too soon to tell, as improvements usually are first seen in 3-6 weeks. The full benefit of this drug may not be seen until after 12 weeks of treatment.

Although I may not (yet) be able to notice the benefit, I have noticed some of the lovely side effects that come with methotrexate: 1) nausea, 2) slight hair-loss, and 3) FATIGUE. A little nausea is expected with methotrexate, but there are some actions that can be taken to reduce this. First, if the stomach issues are really bothersome, switching from pill- to injectable-dose can reduce these issues. I originally was prescribed the pill-form of methotrexate but suffered with crazy nausea and vomiting. Plus, my appetite decreased with the pill-form (side-note: not a great thing! I am a lady who loves to eat!). Once these concerns were expressed to Dr. Lupus, I was handed a syringe and bottle (along with some lessons on how to poke myself properly).

What about the hair-loss?Well, it isn’t too bad. I should mention that losing a couple of strands is not bad in comparison to once being bald. I do have to practice the art of “cover-up” as part of my morning routine. Due to the crazy Houston heat and humidity, I have ditched the wigs. My options have been 1) tying a scarf, 2) applying the fabulous and dependable Joan Rivers Beauty Great Hair Day fill-in powder (brush included when purchased), or 3) Kamo hair fibers (literally small hair fibers that camouflage for full-looking hair).  Different from lupus-induced hair loss, hair loss from methotrexate use does come back. Just give it some time.

Fatigue is the number one side effect of Methotrexate.

Sunday morning-ish

FATIGUE— what provoked me to write today. I take my weekly shots of methotrexate on Friday evenings. Its amazing how my body knows it is time for the weekly injection, because I am hurting Friday mornings and throughout the day. Like a druggie, all I can think of is getting home to shoot myself up with this poison (really- the color of this liquid is Mountain Dew yellow…). A couple of hours after my injection, I am exhausted and fall into my bed. I only emerge from my cave of a bedroom until the following Sunday. That’s right- all of Saturday is GONE! Yes, I am a tad frustrated– only because I am still a single-thirty-year-old who wants to have fun, especially on a Saturday. My weekend routine has become a huge lonely sleep-fest with the occasional web-browsing to have some connection to the outside world. And, of course on Sunday, I check on Facebook and Twitter to see what  kind of dumb trouble my friends got into– and I do judge them ;).

Balancing the drug risks and benefits… while factoring in side-effects, nuisances, convenience, and quality of life

THE DIFFICULT MATH EQUATION OF LIVING WITH LUPUS (or any chronic disease that requires treatment): We all know that pill we swallow, that injection we take in, or that liquid that we watch dripped and infused into our body via IV has a risk-of-something. Those risks, severe or not, have to be balanced by US, the patient, with the potential benefits. So, when do we say NO MORE to the drug that is potentially there to help us? Well, that is on an individual basis. We each have our own preference and we each need to voice that preference. We, as patients, need to know the answer to the difficult math equation:

When do the drug risks and side effects outweigh the benefit of treatment and our quality of life?  

Remember, to include those other factors that may weigh your decision- costs, convenience, nuisance… etc. These factors will differ for every person. Unfortunately, I don’t have the answer to everyone’s equation… I am just barely figuring out mine. For instance, the equation I face is the following: How do I balance pain-relief to quality of life? In other words, is the potential pain-relief worth me losing a Saturday? I will know the answers once I start seeing the benefits… but for now I don’t mind getting to spend one-day in bed while my body is getting its fix. And to be quite honest, I feel better on this Sunday.

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!

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

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: