Uncategorized

CSC: Confidence, Support groups, and General Updates

It was definitely an internal battle earlier.

To shower or not to shower?

Showering still won though. I know I have to, so I will. And I did. Yay to having the courage to shower three days in a row! I think it also helps that I am seeing less and less shedding every time I comb my hair. It’s now almost back to the amount of hairfall I get when I was still “normal”.

I now have more courage to wear my bonnet — not that I have a choice, but I’ve now learned to own it than hide it. I’ve even learned how to style it better! I’m actually looking forward to maybe buying a couple more, just so I have some variety.

Surprisingly, I also have been liking the taste of the Spiced Tea that I made. So much so that I brewed a liter of and I’ve slowly been drinking it. I’ll share the benefits and the recipe within the week.

For those who stumbled on this blog looking for more information about Alopecia Areata and perhaps for support, I’d like to share a Facebook group that I am part of that has shed much needed light to our condition and what can be tried to help.

I’m a new member, but so far all I’ve been seeing are nice messages, helpful tips and doable recommendations. Please note that this is only for females, but if you’re looking for a gender neutral group, I joined one too. I just haven’t interacted here much.

I’m also a part of an all around female support group, which introduced me to a cool blog that I now visit daily. This group offers me good vibes and positivity everytime I drop by.

My mood is much, much better these days. Maybe it’s the good food I’ve been preparing for myself lately, or if it’s the medicine effects, or if it’s just my outlook in general. Still not complaining. I hope this continues.

Here are my stats for today:

Weight
Mood
Temperature
Blood Pressure

See you next time!


P.S. I’ll be using the abbreviation from now on to save space. CSC = Current State of the Crown

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2018, Alopecia Areata, Current State of the Crown, Health and Fitness, Reactions

Current State of the Crown: Victim Blaming, Noticeable Progress and Plans to Move

Before anything else, I just want to say that I appreciate all the messages I’ve been getting lately. I was so scared of judgment that I can seriously count on my fingers the number of people that I told about what is really going on with me. And even within that group, less than half knows what I’m going through. I’d like to say I’ve never missed a day of blogging ever since I got diagnosed, and these blog posts are connected with my Facebook profile. So everytime I posted here, it gets shared to my social media accounts. For some reason however, a photo album of the blog pictures get created rather than being under the Featured Image blog photo. Of course, my Facebook friends are seeing it and I’ve been receiving quite a lot of comments and personal messages about it. I really do appreciate every single message (and I am surprised I am receiving this much support), but messages like this just doesn’t sit well with me.

“Kung ano-ano kasi ginagawa mo sa buhok mo kaya nagtatampo.” (Your hair is mad at you because you do so much to it.)

“Ayan kase kulay ka ng kulay ng buhok mo.” (That’s the effect of always coloring your hair.)

“Kung ano ano kasing kaartehan ginagawa mo kaya nagkakaganyan katawan mo.” (You’re too vain that’s why that’s why that’s happening to you.)

“Baka naman kung ano ano pinapahid o iniinom mo kaya nagkakaganyan.” (You’re using too many cosmetics or taking too many unnecessary things which is why that’s happening.)

Or something along those lines. Look, not that I want to look ungrateful to the attention and support that I am currently experiencing, but I would love it if people would ask first what’s happening and why it’s happening rather than immediately pointing fingers. It does nothing to improve the situation. It just makes you look like a jerk, which I know you’re not. I know you’re trying to tell me that you care and hope for my wellbeing, but saying those things just doesn’t do it. There’s absolutely nothing wrong with just saying “I’m here for you.” or “You can get through this.” or any other paraphrasing or translation of that statement. That alone is enough, and much more appreciate than you blaming me for a condition whose reasons can’t even be explained by science. With that rant aside, I’d like to report a pretty awesome day today. I was able to drop by the grocery store and purchase a few things that I wanted and needed, like food and spices. I bought rice, bread, cheese, sweet potatoes, cooking oil, bullion cubes, sesame seeds, paprika, ginger and turmeric powder. Then I also bought some more vegetables in the wet market near my apartment and I cooked pinakbet. I wish I took photos but it doesn’t really seem photo-friendly for me. That didn’t stop me from finishing everything though. I don’t know if it was because I was hungry or because I made good pinakbet on my first try. I made some spiced tea to go with my healthy lunch too. I brewed green tea and added turmeric, ginger, cinammon and a tiny bit of brown sugar. I know I said I wouldn’t try anything else aside from the medication I am currently on, but I don’t think it would hurt to try and live a little healthier. I also really liked this tea that I had it twice. I don’t know what to call it though. Spiced Tea? Another thing I’d also like to share is the amazing boost of self-love and care that I experienced. Not only did I cook a healthy lunch and prepare herbal tea, I also took a shower twice in a row since I my hair started falling out. I became wary of taking daily showers when my hairfall intensified because I was scared of more hair falling out. I know, I was instructed not to skip showers to heal the dandruff that was starting on my scalp when I got diagnosed, but I just can’t. Everytime I see and feel the hair strands shedding I just don’t want to mess with it. That’s why when I got the courage to take a shower, I did. I made sure to use moisturizer afterwards too and I felt really refreshed. I also made sure all traces of makeup was removed and used a sheet mask instead of just using a makeup wipe and going to sleep. I think yesterday was my best sleep in a long time. Not to mention — my hair fall significantly lessened today. I think it’s both the effect of my thyroid levels normalizing and the corticosteroids calming down my immune system. I’m not complaining. I’m enjoying effects of actually feeling normal again. I wasn’t able to get my vital stats checked, but I promise I do those tomorrow. I’m also planning to move my blog to Blogger, because I do want to monetize my blog without having to purchase a hosting plan on WordPress. I have tried to figure out how to do it, but I think it will all boil down to moving it manually, post by post — which I’m not too excited about, but I think this would be a great way to revamp and streamline my blog. I will keep you all posted, as always.

2018, Alopecia Areata, Current State of the Crown, Dear Diary, goals, Health and Fitness, IRL

Current State of the Crown: Rollercoasters, Goals, and Expensive Wigs

I spent the weekend in an emotional rollercoaster. I spent Friday extremely productive. I booked an appointment with a dentist (this is long overdue) and an gynecologist (because it’s about damn time and I’ve read about the possible links of AA and the female parts). I finished about half of my laundry load, I deep cleaned my bathroom and I tried new (vegetarian!!) recipes.

Then from that lovely light feeling of productivity, I fell in a deep ugly crying session. I cried about my hair (surprise surprise), asking the cliche “Why me?”, mourning for my hair generally. Then I fell asleep and when I woke up I drafted about six blog posts.

Pretty much still losing quite a bit of hair at this point. I fell asleep without even changing into lounge clothes so of course I wasn’t able to shower. I woke up with an itchy scalp which went away after my first corticosteroids dosage. Fucking little pills punch a bitter explosion. I either take it with milk or a literal sugar spoonful. That’s the only thing that can mask the taste right away. Kind of like chasing a tequila shot with lemon and salt.

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12/13/18
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01/14/18

Same routine. I was writing nonstop in my journal, noting various “remedies” and “cures” I was able to find on the internet and judging whether I am willing to try them or not. I’ll share the information I’ve gathered in another blog post I guess. Then come the afternoon and I was bawling again. I don’t even know the reason why. Perhaps it was my hair again, or I was feeling so hopeless about my situation, or my monthly visitor is just wrecking havoc.

The 14th of January was yet another productive day. A productive no-sleep day because it was back to work for me come midnight. So yeah.

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2nd day to wear a bonnet

Now I’m sitting here in my station wearing my bonnet and having a full face of makeup on. I styled my hair into two braids and just pinned the loose ends up and put on my bonnet. Then I made my face up. Defined eyes, blinding highlight, bold lips, the works. Probably not the best idea, but whatever. I need a confidence boost.

And I need a nap, I’m literally passing out. BRB in 45 minutes.

Okay, back.

Once I had my face made up, I realized that this may not be so bad. It opened up a lot of opportunities for me. Opportunities that I didn’t even think of before, like wigs, hats, etc. I even got back into wearing makeup, which is really nice. I missed doing my makeup. I just have to choose between using makeup and trying out a new skincare routine. I’m not sure if it’s okay to use makeup with new skincare routine.

So… now my goals are to make myself better. Maybe it’s taking care of my skin, or making my skin color even. Or maybe creating new makeup looks. Or experimenting with wigs. That’s another thing I wanted to talk about.

I was inquiring about a wig, and the conversation was going well until we talked about prices. It felt like a poisoned arrow when I realized how much my hair would have been worth if this didn’t happen. I wouldn’t need to look into wigs or anything at all and just be.. normal.

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But right now I’m not and I have to deal with it. Diosmio, what a mess I have gotten myself into.

But is it really my fault? That my immune system decided it’s a good idea to attack my own body? Perhaps, since this pretty much means that I wasn’t taking care of myself.. Or maybe not, because genetic lottery is just not on my side in this lifetime.

In any case, let’s deal with it.

Oh, and for my vital stats, I wasn’t able to track those these weekend since I didn’t have any means to. Resuming those tomorrow.


Sources: Advanced Hair Clinics and National Center for Biotechnology Information

2018, Career, goals, IRL, Self Management, Time Management

My Ideal Week

I came across Michael Hyatt’s blog post about making an ideal week, suppose you have 100% control of how your time is spent. The idea is that since time is a resource, it will be treated as a resource, and is allotted to certain “departments”.

As Michael Hyatt explained it,

My Ideal Week—the week I would live if I could control 100% of what happens—is divided into a simple grid. Each day has a theme. In addition, each day is segmented according to a specific focus area.

My week looks entirely different now, compared to how my spreadsheet would have looked like a few months back. I actually made another one that’ll show how may have looked like if I went back to school this semester. (I filed for a leave of absence — that’s another blog post)

Anyway, let’s focus on the spreadsheet that I’ll actually be using.

janessapablo-my-ideal-week

My day theme is right above the days of the week.

My Sundays are dedicated to tying up loose ends (errands, week calibration) and taking a bit of time for myself (devotion, meditation, etc) before I go back to the workforce.

My Mondays and Wednesdays are my routine days — work, home, meditate, relax and sleep. I think this would boost my stress management skills and reinforce the thought that I have an outlet, writing.

My Tuesdays and Thursdays are my fitness days — I’d like to take some time from my day to be active for one and a half hour — be it power walking or actually going to the gym. I intend to eat a little healthier these days as well.

My Fridays are reserved for house keeping like groceries, planning out the week, cleaning, etc. Mostly groceries, as it would be time and energy efficient (the market is on my way home and it’s my first rest day)

My Saturdays are my creative days. I am refreshed from getting more sleep and I have a plan to follow for my posts. This is the day that I consider my “cheat day” as I won’t impose any time for sleep. More flexibility.

My focus areas are on the first row. The time blocks of my week are color coordinated with my focus areas. I modified this part to reflect my week instead of following the template Michael Hyatt used because I have a different shift schedule. I just made sure to give myself ample time to wind down before sleeping and roughly the same time waking up to create a routine.

One thing I also learned from his blog post was to make hard boundaries, which I can only explain as “Once work time is up, stop working.”. Each of my focus points are also there to be used as my guidelines, and not set rules. I believe this would help me this year because there’s more flexibility with the periods, unlike when I had every hour assigned to a task. Now, I can just refer to my Ideal Week and see if the task on hand is in line with my goals. If yes, then I decide where to put it in. If no, then it’s taken off the priority list and revisited sometime later. I made sure to allot large blocks for rest and relaxation. I think with my current condition, I need all the chill I can get.

I also used the notes feature of Google Spreadsheets to insert any snippets that I do have to remember such as medicine doses and writing prompts. When I print this out, I’ll just use a ticker or a post it for reminders.

I foresee that having a routine and a template to follow will lessen my stress levels because I don’t need to brainstorm what to do first. I can just assign tasks to their corresponding time blocks and deal with it when the said time block comes up. It will allow me to focus on specific tasks for specific time periods which I believe will increase my productivity greatly.

 

I plan to implement this by next week and document my progress. Just as I always do.

2018, Alopecia Areata, Current State of the Crown, Health and Fitness

Current State of the Crown: Bonnets, Musings and Little Steps

janessapablo-firsttimewearingabonnet
Smiling despite being heartbroken.

I have come to the point that I can no longer style my hair to hide the spots.

Still, the fear of people knowing or being curious strikes fear in my heart.

Fear of judgment. Fear of gossip. Fear of pity.

But what can I do?

Not covering it up would invite much more questions.

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Highly visible bald spot.

I’ve been listening to a motivational podcasts lately and one thing stands out.

Fear becomes progress and struggle is beautiful.

I have an ongoing battle within me, the good wolf and the bad wolf. Both of them ready to kill each other any minute of the day. Both are mortally wounded but neither have any indication of backing down.

Spotify: Motivational Podcast Playlist by Landon Lynn Clark

Everytime I listen to these podcasts, I see in my mind’s eye that the good wolf is growing bigger, stronger, fiercer than the bad wolf. Everytime I get lost in my thoughts, the bad wolf growls louder and prouder. There have been multiple times the bad wolf has grown so big the good wolf looked like a newborn pup.

But somehow, the good wolf slowly recovers and catches up with the bad wolf.

I almost let the bad wolf win earlier. I was so fearful of what other people are going to say that I almost didn’t want to go. But I have to, and so I did. I’m so proud of myself.

But now I’m here.

Standing strong and facing all these struggles. One day at a time, one step at a time.

Lately I’ve been researching so much about my condition, learning about any possible cure (there’s none), chances of relapse, chances of passing it down, possible causes, diets or regimens that I can try.. All sorts of things that I can do to help myself.

Looking for something that can help me step up, get up, rise up.

The common denominator is to take care of myself. To realize and remember that I am a human being, I have limits, I need down time.

I am proud of myself.

I am proud of being able to push myself farther and harder in everything I do. I am proud of creating me.

But I am not proud of abusing myself.

There’s a thin line between pushing limits and abusing capabilities.

I very well believe that I abused my capabilities. To bounce back, to endure, to ignore.

How will I proceed?

I’m not really sure right now.

But sure enough, I will overcome this.

I decided to start with making an effort to keep myself healthy. I got a new Fitbit Zip for starters.

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New Fitbit 🙂

As for the actual Current State of the Crown, here we go;

01/11/18

Weight: 53.2kg

Mood: Flatline

Temperature: 36°C

Blood Pressure: 100/80

I think I’ll also add in a screenshot of my Fitbit Dashboard somewhere.

Regarding my second day of taking corticosteroids, I feel mildly bloated and my favorite shirt feels a bit too tight on me. I don’t really have an appetite as well. I think I’ve eaten less that a thousand calories yesterday.

The ointment is still the same — meh.

I skipped the medicated shampoo today, as I’m only to use it MWF. So I used the gentlest shampoo I have, Johnson’s Baby Shampoo.

I still have a lot of shedding though, and even thinner hair. Oh well.

I guess I have nothing else to do but take care of myself and as always, trust the process.


Note: These Current State of the Crown Posts are posted a day late. Please refer to the date noted in the post instead of the date the post went live.

2018, Current State of the Crown, First Impressions, Health and Fitness, Reactions, Uncategorized

Current State of the Crown: Foundations of the Battleground

So I decided to make a blog series about my experience with Alopecia Areata, starting with out with my hair’s current state and some progress pictures.

I will also be sharing with you my trichoscopy photos and how my medication is affecting me. I’m hoping to make this a daily post, but will most likely be an every other day thing. I still want to post about different things and I have a couple of posts that I am pretty excited to post about.

So, let’s get started.

janessapablo-Felix_Paolo_Lizarondo

As mentioned in my previous post, I was diagnosed with Alopecia Areata on the 9th of January, 2017 by my father’s cousin, Dr. Felix Paolo Lizarondo. If you need a friendly, understanding and knowledgeable dermatologist based here in the Philippines, I highly recommend him!

 

 

Just a heads up, some people may be a bit grossed out by the next pictures, which are my trichoscopy photos.

Trichoscopy is a hair and scalp evaluation technique which helps in distinguishing conditions like Alopecia Areata and and Telogen Effluvium in my case. These are usually 10-fold or 70-fold magnifications but I think mine is just 10-fold.

The red flags of alopecia areata are visibly noticeable on my scalp, such as the exclamation mark hairs, coudability hairs and broken ends or what I used to call regrowth. I included a photo from the internet for comparison.

 

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I also have the yellow dots and black dots, indicative of hyperkeratotic plugs and destroyed hair follicles.

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Hyperkeratotic plugs are an indication of a presence of an abnormal quantity of keratin resulting in rough, cone-shaped, elevated papules. The openings are often closed with a white plug of encrusted sebum.

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As for the scaling and irritated parts of my scalp, those are mostly after effects of me not washing my hair everyday — resulting in itchy scalp, dandruff and icky stuff.

Now that we have that laid out, let me show you how my hair currently looks now, fresh out of the shower.

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01/10/18

I have Diffuse Alopecia Areata, so rather than having patches of bald spots, I have very noticeable thinning all over.

Here are photos taken in a similar fashion so you can see the progression easily.

I have a very active case of DAA , which is why Dr. Lizarondo decided to act fast and prompt my system to hit the brakes. I was prescribed corticosteroids to be taken daily for 2 weeks. I started taking them on the 10th of January 2017 and holy fuck I wish I was warned about the taste. And the after taste. and the after after taste. Heck, even my burps taste like it !! The only thing that was able to “extinguish” the taste was a cup of milk.

I was told to monitor myself for anything out of the ordinary, and girl, I took that to heart. I am now monitoring my weight, mood, temperature and blood pressure.

01/10/18

Weight: 53kg

Mood: Irritable

Temperature:

Blood Pressure:120/90

I think I’ll monitor my water intake and food intake as well. Just for shits and giggles. I mean, I used to, and I don’t know why I stopped. Life, I guess.

I was also prescribed a topical scalp ointment, calcium and Vitamin D supplements and a medicated shampoo. Let me just quote my journal entry for my first impressions regarding these products.

…the shampoo, well, it’s medicated. What can I do. The smell is not too bad and it doesn’t really linger. No irritation so far, except for a teeny sore bump I had on my nape after shower. It’s gone now though. The shampoo felt a little weird when I washed it off though, as if my scalp absorbed the bubbles and it’s just some viscous liquid that I applied. The cream is.. satisfactory, for the price. Come on. It cost nearly 3k for that tiny bottle! Of course I expected at the very least a cooling sensation, or a nice scent, or something. But no. It was just a semi clear gel that smelled literally invisible and felt like nothing when I applied it. Just a bit greasier.

To end this, I’m just a bit disheartened to know that it’s not recommended to use a hair concealer or spray to hide the obvious balding spots yet, as it may interfere and contaminate my scalp and treatment. I mean, it’s for vanity purposes, yes, and I know why it’s not recommended, but your girl needs a little boost you know? I can’t live in hoodies and not going out forever. Which means 2-3 months, since that’s how long it takes for hair to actually and noticeably grow back.

Do I have anything else to say?

Hmm. Nope. Don’t think so. I guess I can always add it in if needed.

That ends the first Current State of the Crown, meeting adjourned.


Information provided by my doctor, American Academy of Dermatology, Philippine Society of Cutaneous Medicine and National Alopecia Areata Foundation.

2018, Alopecia Areata, Health and Fitness

I have Alopecia Areata

The hardest part is overcoming the fear.

My fear.

My fear of judgment, of other people’s opinion, of how they see me.

I am going for my dermatologist appointment later, my grandparents are coming with me. The two people that I have disregarded and taken for granted before are now the two people I can’t live without. They are my rocks, my foundations. I’m glad they will be with me later.

My doctor will be a relative of ours, Dr. Paolo Lizarondo. He’s my grandmother’s nephew. I contacted him and sent him the photos that I have been taking to record what’s going on with me. His first guesses were Telogen Effluvium or Diffuse Alopecia Areata. I’m praying that it is Telogen Effluvium, because it means that it’s temporary. I would just need to determine my…

Update: I have Diffuse Alopecia Areata.

I was not able to finish this blog post due to time constraints, but let’s continue where I left off.

Alopecia areata is an auto-immune disease that affects about 2% of the global population. I just computed this myself, basing on the estimate of the affected global population and the current global population, so please don’t quote me on this. But imagine the odds. Out of 7.6 billion people in the world, I get to be part of the estimated 147 million people who get Alopecia areata. Cool.

I’m not complaining. I have already come to terms with my situation and is well over the self-pity zone. What I want to do now is recover and make sure I don’t pass this on.

Dr. Lizarondo confirmed that I have Diffuse Alopecia Areata and that it was good that I was able to check with him the soonest possible time. He said that my case was very much active, and right now our goal is prevent any more shedding. I told him that I wanted to just shave it all off, but he convinced me to wait a little while — two weeks actually — and see how I react to the medication first.

I was also finally assured what the stubble and painful bumps were. The stubble was breakage, not regrowth, and the bumps were due to not washing my hair as often as I should. I was given gentle shampoos that are safe to use and he reiterated that this is not an external issue.

Due to the advanced state of my hair loss, I was prescribed steroids. 20mg of Methylprednisone to be exact. A corticosteriod, to be exact. Corticosteriods suppress the immune system, which makes sense, as Alopecia Areata is an auto-immune disease.

Long story short, my immune system decided to attack my hair follicles and treat them as enemies. My white blood cells gather round my hair follicles and basically bully them to stop hair growth. This weakens my hair and it falls out.

janessapablo-alopeciaareata-hairfollicles
Photo from JCI

Now the medication prescribed is to calm and/or suppress my immune system and stop it from attacking more hair follicles, which in turn should lessen hair fall. I also have an topical treatment and supplements.

I have a feeling that it’s not just my thyroid that’s causing this — it could have also been the sudden increase of stress levels in most of my life aspects. Or my dysmenorrhea medications. Or genetics.

I have a lot of things to consider right now. I want definitive answers for what’s happening. This actually sounds like a losing game because the only predictable thing about this disease is that it’s unpredictable.

I’ll have to make several doctor’s appointments to get to the bottom of this. I want to get as much information as I can to be better understand this issue and how I can move forward.

As for now, I’ll take my medications religiously and observe myself for two weeks. I won’t try anything  else like I planned

Thank goodness for medical insurance. I don’t know how else I’m going to afford all of this.


Information provided by my doctor, American Academy of Dermatology, Philippine Society of Cutaneous Medicine and National Alopecia Areata Foundation.

 

P.S. I know this post is unorganized — just like my thoughts. I’m still trying to process everything in a logical manner.