Hair loss and cover-ups

Experiencing hair-loss because of xx medicine or xx disease? I have touched on this topic several times (check out: this, this and this). It has been two years since I shaved my head, and to be honest, I would do it again! Being bald was an eye-opening experience and a life-changing event for me (the diva pre-lupus was lame!). But I do looove my hair. Although I have come a looong way and have enough hair to style (I use a hair dryer!), I still tackle bald spots on a daily basis. If you are in the same boat as me (i.e., have enough hair to go without a wig or scarf), let me elaborate on some options you can use as a cover-up:

1. Make friends with your hairdresser. Explain your situation and have him/her give you a cut/style that helps with your cover-up. It is amazing what a good style can do for you. My hair is styled with longer layers around the bald spot– so that I can use the Donald Trump move of swooping hair over the spot, without looking cheesy.

joan2. Joan Rivers Great Hair Day: My auntie, Joan Rivers ;), came up with a great product to give the illusion of thick full hair, hide hair loss, thinning hair, bald spots & root growth. This product comes in three shades: blonde, brunette, and salt and pepper (although I have seen shades for red-heads). This is a powder that dulls your shin y bald spots, therefore, giving the illusion of thicker hair. The powder comes in a compact, which includes a mirror and brush applicator for easy application. You can use the non-brush end of the applicator to separate your hair strands to expose the bald-spot, then you simply brush on the powder to the spot. It is very easy to use and is great for an easy cover-up. FYI: Running behind on your hair color maintenance? This product works for root-touch-ups. Diva tip: Although this product will not smear, I recommend hair-spraying the blotted areas for extra staying power.

Pros: Easy to use and on the cheap (no more than $19.99). Works great for smaller cover-ups. Can order from online retailers (QVC, etc) or from retail stores, such as Bed, Bath & Beyond.

Cons:  If you are trying to hide a larger-than-dime-size bald spot, consider using the options below. When I used this powder for larger areas, it looked like I painted on my scalp.

2. Hair fibers (Products: Kamo and XFUSION)

xfusionThe new wave of cover-ups has arrived. Hair fibers are one-step ahead of the powders and spray-on bottles, by giving the illusion of hair strands on your bald spot. The problem with powders and sprays is that, when applied to larger areas, it looks like you colored your scalp. These hair fibers give dimension– you are literally applying hair to your bald spot. Hair fibers cling to your existing hair strands for a great blend. These fibers hold on for dear life and stay on until you shampoo your hair. These products are sold in salons and come in a variety of colors to match you. I have used both the Kamo and XFusion fibers, and they both do the job. No more worrying about exposing your bald spot– you have more important things to think about!

How to apply: USE ON DRY HAIR ONLY! You do not want a wet clumpy hairy mess on your hands. Style your hair as usual (i.e., apply all products needed). Find your spot, and shake on the fibers. Gently pat to disperse the fibers. Again, I recommend, hair spraying the area for extra staying power.

Pros: Easy to use and quicker than brushing on powder. Your cover-up will not look like a cover-up.

Cons: Cost is higher but you are paying for what you get. Kamo fibers are exclusively sold at Visible Changes in Texas only. :( XFusion fibers seem to more widely available, and you may order online.

It is unfortunate that we are young and have to experience with issues, such as hair loss, however, it does not have to beat us down. Luckily, there are options and products we can use to make the issue disappear for a moment. Jiggly women (i.e., ME) use SPANX all the time… why not use these cover-ups to give another illusion? The great thing is that you are still able to rock your hair and show-off your great personality. If you have any more cover-up suggestions, please feel free to add to the list!

Stay Fabulous!

New Hair Product Obsession

My journey of hair loss has led me to try several products to combat my rebellious hair strands. My newest obsession is the new line from Garnier Fructis “Fall Fight”. The system includes shampoo, conditioner and leave-in-treatment. The formula with energizing caffeine, fortifying biotin and fruit vitamins, strengthens hair from root to ends, reducing falling, breaking strands. The trick with the conditioner and leave-in-treatment is to take a moment to massage the product into your scalp; at this time you will feel your scalp being refreshed.

These products are widely available and are at a low-price.

Diva note: I have used this product for almost a month, and have noticed my hair is getting stronger. I have also noticed less rogue-strands on my pillow and in my fingers after running them through my fabulous hair.

If you try this product out, let me know what you think!

Stay Fabulous!

BITCH STOLE MY LOOK

As I have mentioned before, I lost my hair due to lupus and its treatments  starting in 2010 (click here for details). Many women experience hair-loss at differing degrees because of lupus. For about two years, I rocked my bald head around Houston (with the occasional cover-up on the cooler days or when having a fancy meal).

Rocking this look comes with some great perks… and some lows. The obvious perks include: 1) easy hair management (you shower and GO!), 2) showing off your beautiful face, and 3) showing the world that you have more self-confidence in your pinky-toe than any other long-haired woman around you. The obvious lows…. well… 1) being constantly looked at (which I didn’t mind), 2) being the topic of whispered conversations (“I wonder why she is bald…” etc), and 3) having to deal with ridiculous ignorance and stupidity (seriously, once a jackass came up to me and said: “Are you lesbian?… you have no hair so that means you are a lesbian. You shouldn’t be here.” Let’s just say he walked into my fist, and then walked out with a bloody nose. Somehow, I got banned from the drinking establishment…).

Diva note: Do not allow these lows (especially brought on by other people’s insecurities and ignorance) to bring you down. It is not worth your time or your emotions!

During my time of baldness I followed the words of my hair stylist (if you are in the Houston-area, check out these ladies at A House of Designersdiva-approved) and from my best male friend (who else would know about scalp therapy than a man with a great set of hair–check out thementoringsession): TAKE CARE OF YOUR SCALP!

Sidenote: I tried the steroid injections into the scalp by my dermatologist (a total of 13 into the scalp in one sitting). But after 5 sessions, I was not seeing any results!

I became an advocate of taking care of my scalp. I invested in great shampoos and condition (check out Nioxin products). Monthly, I visited my hairstylist for a buzz-check and for a treatment of Nioxin Scalp Renew Dermabrasion Treatment. This treatment is like a facial for the scalp, can only be done in the salons, and recommended for use every 30-45 days. I recommend also checking out Nioxin Diamax, a leave-on treatment that can be used with the Nioxin 3-part systems for thicker, denser-looking hair.

Nioxin, known for products for thinning hair, has taken the science of skincare and applied it to a new at-home hair-thickening treatment, DiaMax. The intensely hydrating formula—which contains niacinamide and panthenol, ingredients also found in some of the best skin-saving creams–directly infuses each strand with healing, strengthening, and protective properties for plumped-up, thicker locks (nioxin.com; $50). [credits: Christina Han; W Magazine]

By the beginning of 2012, I have noticed my hair was growing back AND thicker! This is great news even if I still have a bald spot in the back of my head (about the size of a fist). My hair still tends to abandon ship when I am going through a flare. I talk about how to cover these “character” spots in a past post: Methotrexate + Benlysta= ?? On the real, I certainly do miss my no-fuss-hair-less morning routine!

January 2012 with a dear friend. My hair was growing back blonde!

After loosing your hair, you come to realize that you are more courageous in choosing hair styles– because if you don’t like it, you know you can always shave it off and still look fabulous! I was rocking my own personal style with hair– half head shaved while growing out the other side. I loved my ‘do and was certainly the only-one rocking it in the City of Houston (…where the long-haired blondes and brunettes roam…).

April 2012

While watching E! Fashion Police (a diva-obsession), my auntie Joan Rivers was making a comment about Miley Cyrus’ new do. I couldn’t believe my eyes- that BITCH STOLE MY LOOK!

September 2012

Damn the man! <Slapping Hand on Forehead> NOW, in addition to receiving the usual “I love your hair” comment, a statement of “It looks like Miley Cyrus” follows!  

Which brings me to my quote of the day:

Imitation is the greatest form of flattery! ;)

Stay Fabulous!

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

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.

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

I am not my hair- inspiration

Here are some helpful links regarding lupus-related hair loss:

http://www.mayoclinic.com/health/lupus/AN01876: A quick Q&A overview

Coping with lupus-related hair loss from the  Lupus Foundation of America

Lean more about alopecia (aka hair loss) (click here for pdf)

Also, here is one of my favorite songs: “I am not my hair” India.Aire. I hope it gives you a smile and some inspiration.  I cried when I heard this song for the first time as a bald woman. Now, I hear it and feel like I can do anything.

Do you know any helpful sites regarding lupus-related hair loss? Please feel free to post!

I am not my hair- introduction

“Hair loss occurs in 45% of people with lupus at some time during the course of their disease.”

Most frequently the hair loss occurs at the onset of the illness, and may be one of the first symptoms of the disease recognized by the person. Most often, the hair loss is from all over the head, but sometimes the hair falls out in patches. When the disease is brought under control, the hair should grow back. Sometimes there is a rash in the scalp—usually subacute or chronic discoid—that interferes with the hair follicle. In this situation, the individual is left with a permanent area of alopecia. Drugs used to treat lupus, such as prednisone and immunosuppressive therapies, also may be the cause of reversible hair loss.

Good-bye long hair!

I use to spend so much $$$ and time/effort on my hair. My hair use to be my identity and my creative outlet. OK- so maybe the masses were not jealous of my hair and maaaaybe they weren’t saying “Geez, that Diva has great hair!”  As much as I fought with my hair every morning, I still loved it and ROCKED it.  I noticed my first bald spot in May 2010 and didn’t think much of it. “No worries- I can hide this.” Before I knew it, my bald spot spread like wild-fire! I was leaving traces of hair everywhere. Showers were torture as I could see strands going down the drain. I was loosing hair in massive amounts. The strong strands that survived the massacre were those in the front of my head. At the time, I was with my ex, Mr. Aguinaga. We were together for 9 months at the time of my first strand departure. By the time the last strands were hanging on for dear life, Mr. Aguinaga disappeared into the arms of another woman who was healthy (more details to come.. it’s juicy). I knew Mr. Aguinaga was never going to be good enough nor strong enough to be with me- more on that to come.

There came a point when the inevitable had to happen- I had to shave my head. I remember the day my favorite stylist picked up the razor. I cried as soon as the razor hit my scalp (luckily- I had my one of my best friends with me- thank you Mr. Carmona). Through my tears I thought: I will never be the same. I knew that lupus was going to bring out the best in me by pushing me outside of my comfort zone and revealing my strengths.

I have an arsenal of wigs and scarves. Wig shops became a bi-monthly visit. I was not worried about the shopping expense as this was now a medical-expense. I bought hair and submitted receipts to my insurance company and for those not covered will be on my tax return. (Perks of a chronic disease, eh?) Over time I gained knowledge on the world of wigs and became an expert (“Wig knows wig“). I learned new terms (I had a “wig-face”- meaning all the wigs looked great on me), and learned to stay away from all natural elements (water, fire, and air).  Each wig had a name and a personality: Streak, Kikki, Lolita, ‘Nita, Bambi (my blonde one). My wigs were my new accessories and together we were fooling everyone. Joke is on you world!

Even with all the fun I was having with the girls,  there was one thing that bothered me: THIS ISN’T MY HAIR! It was exhausting just to make sure the damn thing stayed on my head and straight I would spit my drink out when men would come up to me at a bar and say “I really like your hair”. I almost want to respond with: “Well, if you like it so much, here ya go!” (As I whip it off my head- That would not be too classy of me). In upcoming posts, I will talk about how men react to my hair-situation.

Will I be bald forever?

Thanks to daily pills of prednisone, 15 steroid shots to my scalp once a month, and  calming of the lupus symptoms, my hair has started to grow back in- BUT not all at once. Of course, I have some lazy follicles that are taking their time to grow back in and, unfortunately, I do have some scarring which will result in permanent bald spots (i.e., scarring alopecia). As I had mentioned before, I am currently taking a form of chemotherapy, methotrexate, as an injection once a week. Like other chemotherapy, a side-effect is hair loss. I started chemo at the beginning of this year as a last-chance treatment option. When Dr. Lupus explained the side-effects, I laughed when he said, “oh, you may loose your hair.” I responded with “Doc, I have already crossed that bridge!” My experience with methotrexate in regards to hair loss has not been too bad. Actually, I haven’t really noticed- because I am keeping my hair short these days. Every once in awhile, when I rub my hand on my scalp I see little hairs breaking free- but I know they will come back. ;) For the majority of patients experiencing hair loss, the hair does grow back once you start to feel better. Rarely, does the flare-up cause scarring, which prevents regrowth.

Wanna hear the perks of being bald? Stay tuned for a fantastic list in a future post.

I am not my hair- Going on the “cover-up” strike

A couple of months ago, I went on strike. Part of it was because of the Houston-heat– it was just too hot to be wearing hair. I was already having hot flashes from the steroids and chemotherapy! The main reason was because wearing the hair wasn’t suiting me style. My style is to be true to myself– to be a fabulous diva no matter what. Wearing hair felt like I was ashamed of myself and denying my true fabulousness. Don’t get me wrong- wigs are great and you will see me wearing one from time to time (especially on cool nights out). I am glad that I lost my hair- because I learned a great lesson- I learned that I am not my hair. Physical features do not define who I am. I am me and beautiful bald. I recommend you, my fellow patient, to put down that wig/scarf and let loose by walking proud with your bald head.