Energy Crisis- Day 14 (zzzz)

Day 14

As promised, I have been taking 2 GNC Women’s Ultra Mega Energy and Metabolism every morning since my last post (on a side note: I roll my eyes every single time I type-out the full label of this product… ultra AND mega??…really!?!? a little redundant, don’t ya think?). The good news is that I am no longer resisting the pills because of their crappy smell. The trick is to take the pills with a good cup of coffee.

This week, I fulfilled my part-time hours from Monday-Wednesday– a tad exhausting for me. My research team is resubmitting a federal grant so each minute has been intense, with very little time to combat any lupus symptoms that creep-up during the working hours.  In addition to the occasional bone-aches, pains and cognitive fog that hit me, I found myself still wanting to pass the BLEEEP-out on my keyboard. HOW IS THAT POSSIBLE?!? I get ample amount of hours of sleep during the night (whether that sleep is actual restful is a different story). I consume coffee like a typical Latina-Faux-Euro-snob (i.e., at 3 hour increments) AND I am swallowing smelly, funky-yellow, ULTRA AND MEGA horse pills that advertise some boost in energy and mental focus. The good news is that I managed to get through the week and completed all my tasks.

Question: Why was I in such a desperate need for sleep during work?

Possible Answer 1: I have lost complete interest in my job… could be that my lupus funk has really gotten to me… I am slowly crawling out of it.

Possible Answer 2: The 7-9 hours of drug-induced sleep that I fall into is not restful. We all know that it is the quality of sleep, not so much the quantity of hours sleeping, that makes a good night’s rest. There is increasing recognition that sleep complaints are common in lupus patients and that the consequences of poor sleep quality leads to fatigue and poor quality of life (Ramsey-Goldman & Rothrock 2010). Up to 80% of lupus patients have complaints of both fatigue and poor sleep quality (Tench et al. 2000). Studies have identified the following to be associated with poor sleep in lupus folks: lack of exercise (…check…), pain (… double check…), depression (… not unlikely considering my lupus funk…), disease activity, sleep-related respiratory disorders, movement disorders, and some lupus treatments, including steroids.

Possible Answer 3: The pills don’t stand a chance against lupus fatigue. Lupus fatigue is such an overpowering force that no energy pill, cups of caffeine, snorts of blow or prayer can resolve it. Let’s not forget that I have been in “the funk”. The best solution for lupus fatigue could possibly be just a good old-fashion nap. Obviously, this is easier said than done, especially when at the workplace fighting a deadline. Check out this great post on lupus fatigue.

This week was tough in keeping my eyelids open. Regardless, I still got the work done (not at the same concentrated pace from last week), which may be the doing of the “ULTRA MEGA” pills. Thus far, I am making the conclusion that these pills do not eliminate but alleviate fatigue.  These pills do provide a good dose of Vitamin Bs, Ds and etc, so I am going to continue to keep taking them with hopes that things will be different next work week.

Diva note: Feel free to contact me if you are interested in reading the full articles cited in this post.

Stay Fabulous!

Advertisements

Energy Crisis- Day 10

Diva’s Energy Crisis Log– Day 10.

I am going to be blatantly honest. For the past week, I have been in what I am calling a “Lupus Funk“.  You may have experienced this before; it is that feeling of annoying-achy all-over pain with a dash of dull headache pain and sufferings of fatigue and fogginess (we all know how difficult thinking and focusing can be while in the state of the lupus fog). Blinking even hurts. Motivation is killed by the lupus funk. Overall, this funk makes you want to just stay in bed and avoid any human contact (dogs seems to be bearable).

On the days that I had to force myself to work, I pinched my nose and swallowed the GNC Women’s Ultra Mega Energy and Metabolism multivitamin with hopes that they would get me through the day of dealing with my crazy boss.  Although I left work still thinking my boss was crazy, the pills were able to give me that energy boost to survive the work day even in the state of my lupus funk.  In other words, they make dealing with the day easier when in such a crappy state, but they do not alleviate the funk symptoms. I still feel funky, but at least the pills give me the energy to get out of bed and conquer the tasks at-hand.

My biggest complaint about the pills is the SMELL! Yes, I am being dramatic. This smell has restrained me from taking my daily-twos on a daily basis. Everytime I open that bottle, I regress to a child resisting to take that horrible-tasting cough syrup (…remember those days??). However, I do notice a difference in the days that start with smelly pills versus those that don’t. The main difference is that more shit gets done when I take the pills (no surprise there). So all I need is somethng to motivate me to take them every day…

image

I am still not 100% obsessed with this pills just yet. I will continue to take these (on a daily basis) and report to you.  

Stay Fabulous!

image

Posted from the Diva on the road

Energy Crisis- Day 2

image

It is Day 2. So, here’s a short-and-sweet update on my progress to resolving my energy crisis. These horse-pills have joined my morning pill-swallowing routine. I take 2 of these a day (recommended dose):

1. Pills smell FUUUUUNKY. The funk punches me in the face as soon as I open the bottle. I would rather be in a room filled with dirty baby diapers covered in sewage (Yes, the smell is that bad.).
2. These pills taste as funky as they smell and induce my gag reflexes (go ahead and insert your dirty joke here).
3. Energy boost is noticeable. Yesterday was my first work-day with these smelly pills in my sysyem. I arrived to a desk covered in multiple projects that had to be done by that day. While reviewing my task list, I thought it would be easier to run a marathon in heels while torturing myself to the music of One Direction and Taylor Swift. Somehow, I came out as a winner and finished all my tasks– AND still had enough energy to stay out of bed until 10pm to work on my personal projects!! Either I was lucky or these pills actually work. But I’m not drawing any conclusions just yet. It is only Day 2.

Stay tune and stay FABULOUS.

Posted from the Diva on the road

Resolving the Energy Crisis

As many as 80 percent of people with lupus experience fatigue. Lupus Foundation of America

What is your biggest complaint of lupus? Pain? Lupus fog? Fatigue? All are crappy symptoms that we must deal with daily–sometimes gracefully and not-so-gracefully at other times. Today, I plan to queen out about FATIGUE. Lately, my conversations have been going something like this:

Regular female: Hi! How are you? How are you feeling?

Diva: I’m OK (lying through my teeth).

Regular female:  Well, you cannot believe the day I had! I blah blah blah blah, and then blah blah blah.  So, do you want to join the girls and I  to do stupid-girl things? I plan on spending 2 hours in getting ready, so to lure a shady man to buy one drink for me. And then, I am going to hopelessly fall in instant love with him- because he buys me that one drink- but then, I will be super upset because he will never call. Are you sure you are OK? You look a little beat.

Diva: Yes, I am fine (lying through teeth). I am a little tired (lying through teeth… full exhaustion and headache setting in) so I am just going to call it a night and drug myself to sleep. Have fun tonight (rolling eyes).

After dealing with fatigue for who-knows-how-long, it finally dawns on me:

Ladies and Gentlemen, we have an ENERGY CRISIS on our hands!

An energy crisis is any great bottleneck (or price rise) in the supply of energy resources to an economy. -from the experts at Wikipedia 😉 (…i have no idea what this means…)

Fatigue is no stranger to me, and it has become a blasted-barrier in my life. I have tried several recommendations to help win against fatigue, but I still find myself fighting that battle. Here are some easy tips from the Lupus Foundation of America:

Tips to Help You Manage Fatigue

  • Alternate activities with periods of rest throughout the day.
  • Establish good sleep patterns.
  • Plan ahead; for example, shop for gifts throughout the year.
  • Prepare meals in advance.
  • Eat a healthy diet and exercise regularly.
  • Stop smoking if you smoke.

Because of lupus and its adorable symptoms (i.e., including extreme fatigue), I have cut down from full-time to part-time status at work. Fatigue has really affected my productivity at work, and performing 150% 5 days a week was becoming less and less doable. Today on my day off, I proposed a plan to resolve My energy crisis. Before revealing my plan, let me break down my day to demonstrate the amount of thought and detail that went to such a logical plan.

1. Opened eyes from a 12-hour coma and crawled out of bed at 11 am (don’t judge it was my day-off) still feeling exhausted.

2. Perform my daily rituals of coffee, steroids, pain-killers, vitamins, and dulce de leche on a slice of toast (very Argentine of me ;))

3. Realized that I had a prescription of Norco (a painkiller) ready for me at the pharmacy. This was enough motivation for me to get out of bed… Showered at 1 pm. (again- don’t you dare judge!)

4. While at pharmacy, stumbled onto the vitamin and supplement aisle and noticed the following product: GNC Women’s Ultra Mega Energy and Metabolism Multivitamin. These timed-release caplets provide a gradual release of vital nutrients.

5. I read the product information:

Clinically studied multivitamin

  • With 1600 IU of vitamin D-3 for breast+ and bone health*
  • Calorie burning support*
  • Boosts energy and metabolism*
  • Supports mental focus*

In a randomized, double-blind, placebo-controlled study of 112 healthy volunteers, subjects taking the GNC vitamin and mineral blend in this product for six weeks experienced statistically significant improvements in markers of B vitamin and antioxidant status, as well as improvements in SF-36 Vitality and Mental Health scores compared to those taking a placebo

Advanced Nutritional Support

  • Includes 1600 IU of vitamin D-3. +Emerging research suggests that adequate daily vitamin D intake may play a role in supporting breast and colon health.*
  • Supplies B-vitamins that are essential for energy production and metabolism.*
  • Provides important bone-strengthening nutrients including 500mg of calcium, magnesium and vitamin D-3 that are essential in the development of healthy bones and teeth.* Adequate calcium and vitamin D in a healthy diet throughout life may reduce the risk of osteoporosis.

Calorie Burning Support

  • Features an energy and metabolism blend that helps boost energy and metabolism and support calorie burning.* The components in this blend also help support mental focus.*

Antioxidant Protection

  • Contains a premium blend of antioxidants including selenium, vitamin C and vitamin E to aid in supporting the body’s immunity.*
  • Combines lutein and zeazanthin to support eye health with lycopene, an antioxidant from tomatoes to support cardiovascular health.*

*These statements have not been evaluated by the Food and Drug Administration. This product is not intended to diagnose, treat, cure, or prevent any disease

GNC Women’s Ultra Mega Energy and Metabolism Multivitamin Label

5. Decided to give these pills a try. I am in need of vitamin B and D supplements and will benefit from the extra boost of energy (and metabolism– this diva is getting jiggggggly). Also, I would not mind the boost in mental focus.

6. Swallowed one (2 pills are recommended per day) at 4:30 pm. I already noticed one thing: these pills smell funny.

7. Today marks Day 1/2 of resolving my energy crisis with this multivitamin supplement. I plan on tracking my status every 2-3 days.

I know what you are thinking “Diva, you sure thought this through.”

Fans, don’t be too jealous of my well-laid-out plan (haha!). I did make a note in my trusty notebook about my new purchase, because I will be visiting with Dr. Lupus on Friday and want to make sure he knows of my new plan to resolve my energy crisis.

Diva note: Always tell your doc of all the medications (including vitamins) that you put into your body.

Stay Tuned… AND 

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.