It’s Okay To Just Be… You

by Y on October 16, 2023

My whole life, I’ve been told to “smile.” Smile more. You’ll be prettier if you smile. It always made me feel bad, because this was my face naturally, how it wanted to be, how it rested. But it felt not enough.  like how I look when I’m not smiling. Pensive. I am a pensive person, that’s much different than sad. 

People assume all sorts of things in life, they assume if you aren’t grinning from ear to ear, or you face isn’t naturally resting in a smile, that something is wrong. 

They assume if you are grinning ear to ear, your life is grand. Neither is necessarily true, or both are true. 

Assumptions in hair loss. You have a wig, well you should be fine, what are you upset about? Other than the loss of our actual hair you mean? Throwing on a wig was life changing, it didn’t solve having to work to accept my evolving look as my hair thinned over the years, the knowing it was final. 

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Nov 2022 I was diagnosed with a second type of hair loss, an inflammatory alopecia. This was in addition to the 24 year old female pattern baldness I have had since I was 21 years old. I knew this was different, it did not behave at all like my hair loss did the previous 2 decades of my life, so I went to try and seek out what could be the cause and received that diagnosis. 

Inflammatory, autoimmune related hair loss is a completely different type of hair loss than androgenetic alopecia (female pattern baldness) and the treatments associated with it are different as well. 

There are two (lesser known) things that are available for *potentially* being of benefit, to those dealing with autoimmune, inflammatory hair loss type situations, and I wanted to share those, because I don’t see them widely being discussed or referenced.

**Please note I am not a doctor, this is just what my understanding is of all of this information, always consult with your own doctor. 

1) Antihistamines – This was surprising to me, but I guess in an inflammatory alopecia the goal is to bring down the overall inflammation of the body, with the end goal of hoping that it helps turn the ship around. I was told to take Zyrtec at night and Allergra in the morning. Although no prescription is required for this, you should always discuss what you plan on doing with your doctor as there could be medication interactions or perhaps in your case it wouldn’t be good for your overall health in general. 

2) Naltrexone – which is primary used as an opioid blocker to help those dealing with substance addiction, it has also been found to be useful in LOW doses, for autoimmune conditions. Referred to as LDN (Low Dose Naltrexone). I take 3mg and I get it from a compound pharmacy, prescription is required for this. 

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It’s not been a good day, I managed to type just that before I start crying. From that I want people to understand how painful hair loss can be, I only wrote “It’s not been a good day,” and the tears poured out of my face, and all at once I’m flooded with emotion.

It’s been so long so long, well before 2022, that I had these feelings to contend with… like this. After I started wearing wigs in 2012, I cut my hair short to an edgy cut that looked like a choice, though it was for functional purposes to look fuller, hide the thinness, see less of the fall and it made wig wearing easier. I adapted. Fully adapted and I lived my life mostly free of hair loss for over a decade.

Getting a second hair loss last year has truly devastated me in what words probably never ever fully capture. It’s disbelief, of how lightening can strike twice, how I could have had to struggle so much in my life with this, then find my way, and then been thrown this, another type of hair loss, one that changes everything I did from the wigs that I wore, to no longer being able to have that short hair cut that I accepted and felt okay in.

Many people don’t understand I lost the frame of my face, the way my hair line used to be, the one thing female pattern baldness never took was these little baby hairs on my forehead, they didn’t help much of anything other than being my trademark thing I saw, since birth, and what felt like me.

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Join me as I attempt to shave my head properly, in a manner that hopefully helps prevent my folliculitis from re-flaring. I began shaving my head May 7, 2023, due to getting a 2nd hair loss (inflammatory alopecia), on top of my 24 year old female pattern baldness. It got really bad, and I reached a point I could no longer look at myself. Shaving my head has been a challenge on multiple levels, beyond the practical aspect of just having a shaved head (which isn’t ideal), and adjusting to that, I got folliculitis, which I had to treat for 3 weeks with 200mg Doxycycline, Clindamycin 2x a day, T/sal Shampoo and 10% Benzoyl Peroxide.

I also discuss some of the struggles I have faced including some frustrating judgment and commentary from others. I explain why I did this, what it gives me, and that I also don’t see wearing my wigs, as a cover up. Replacing the hair I lost, isn’t vanity or hiding, for me it’s reattaching a limb that has been fading away since I was 21 years old. It completes me, it makes me whole, and we all deserve to feel whole.

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Healing In Hair Loss

by Y on September 30, 2023

Healing. Allow yourself time, in all this to cry, to be upset, to accept the unexplained emotions of chaos at times, to scream, to meltdown. Allow yourself the ability to grieve. Within that have hope that this moment can pass from beyond the pain of which you are in.

It can.

Don’t allow others to rob you of your feelings, to make you feel less than or vain, or stupid for feeling downright devastated by the loss, a loss that I don’t think anyone can comprehend unless it’s happened to them.

I took this picture and I see my age – Drier skin, wrinkles, the dark circles I always had since I was born, raccoon eyes. The signs of aging doesn’t bother me, I’m 45. What bothers me is that I lost so much of life to hair loss, 13 years really spent in a deep struggle before I started wearing wigs at 34. I will never get back that time, and I wish I could get a do over, with the mindset of NOW. My life would look very different, hair loss and all.

Hair loss is awful, I’ll never state otherwise, but it wasn’t worth losing years of my life over. At the age of 21 I didn’t know how to cope, at all, with any of this. I couldn’t process a future. What I didn’t know then, that I wish I did, was that I could make it work in a non perfect way, but still in a way that I would allow me to feel good and live my life. I wish I would have accepted sooner. The denial kept me struggling, the denial kept me in pain.

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I shaved my head May 7, 2023, due to a second hair loss I got last year, an Inflammatory alopecia. I have had female pattern baldness (androgenetic alopecia) for 24 years, since the age of 21.

Podcast Episode and YouTube Links Below

I began wearing wigs 11 years ago at the age of 34.

I never expected to get a second hair loss, I never thought I’d be forced to NEED to make this choice for survival, in order to be able to continue to live with hair loss without it stealing any more of my life from me. 

I don’t love this, I don’t love seeing myself with a shaved head, but it is better than the alternative, it is better than the creaturish loss that was more obvious before. In the months prior to shaving, I had reached a place I could no longer look at myself in the mirror, at all. 

Listen On Apple Podcasts: https://podcasts.apple.com/us/podcast/the-womens-hair-loss-project/id1496551496?i=1000629123379

I made the decision to show my shaved head, after never showing my bio hair online for 16 years (the length of time I’ve been online talking about hair loss), I started my site in 2007. I did so because it was so difficult for me to do this, basically impossible… and the one thing that did help was seeing women that had done this FOR hair loss. For that reason, and that reason alone I made the difficult decision to show my head, knowing that I would get dismissive comments about my hair loss. I knew people would see follicles and judge, that’s how it goes. It doesn’t matter if 90% of your hair is gone, or that this destroyed your life for so long, or that you devoted 16 years of your life sharing about your journey, struggles and trumps with hair loss, and trying to help others, none of that matters, people judge.

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If someone has taken the time to share about their hair loss, or post about it online, please don’t dismiss what they are going through. 

Comments such has:

“Your Hair Loss Isn’t That Bad,” or

“I’ve Seen Worse,” or

“Mine is Worse”

Are dismissive and hurtful, to the majority of people on the receiving end. I’m sure there are exceptions to the rule, but to myself and MANY other women comments like these are dismissive and diminish our own suffering we have had to contend with, with our hair loss.  To those that have moved on to another acceptance point in their journey, it can also be potentially quite triggering to a regressive state of a time when they experienced more pain in dealing with their hair loss. 

The struggle is already real for many women with hair loss, no need to add to it. 

Time and time again, I see women feel like they have to PROVE their hair loss. No one is claiming hair loss for the fun of it, no proof is required. 

You do not need to prove your hair loss to anyone, however much you may feel you need to, for that understanding and validation – this is true for friends, family, and online.

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Hair Loss Poem

It is OK to feel this way about your hair loss, it is.. but then we also have to process and move forward. 

Roses are red, violets are blue, I’m losing my hair and this is f’ing Bullsh*t.   I was going for more of a Haiku poem thing ? Watcha think ?

When I say I understand, I really do, and in so many ways.  I mean here I am on the 24th year of dealing with female pattern baldness, and now dealing with a second hair loss I got last year (diffuse alopecia areata) completely carving out my temples and hairline, and I think this is some bullsh*t. 

I accepted my female pattern baldness, I accepted wearing wigs, I accepted cutting my hair off (in 2013) one year after starting to wear wigs so that I could deal with my hair loss better, and by doing that accepted never being able to wear my bio hair in a pony ever again… I accepted the progressive thinning of my hair, I accepted it was never going to come back. 

I accepted, I accepted, I accepted.  

I made it all work and then life is like, wait up, one more. Here is alopecia areata for you, just to keep things interesting.

That’s life, unfortunately, and I have grappled with the understanding of how this can be… now, after all I had already been through, and accepted, but I also know there is no logic, rhyme or reason, nothing that will truly bring comfort. It just is, also the process of mind tormenting oneself with thoughts, of “why” doesn’t really help at all, least not me. 

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My insurance company has just sent me a letter to inform me that there is a “Lack of Medical Necessity” for the Kenalog (Triamcinolone Acetonid) Injections to treat my new hair loss situation.

This isn’t for my female pattern baldness, this is for the diffuse alopecia areata I got last year after an insanely stressful situation I went through – mind and body in 2022. To learn about that, please watch my recent Hair Loss/ Life Update video: https://youtu.be/_8kVx2P7PYg

The steroid injections are to hopefully assist in resolving this new hair loss and get me back to just having the one I’ve had since 1999, androgenetic alopecia. I actually didn’t expect that they were going to pay, but I did receive an approval letter. I was pleasantly surprised when I got the letter stating I was approved. I thought, this must be the first hair loss break I got… ever in 24 years, only for it to be followed by a rejection letter. Citing that I was diagnosed with hair loss (duh), and that the service requested (Steroid Injections) is being “Modified” aka Denied, because there is a “lack of medical necessity.”

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I know it has been so long since I have posted, and so much also has happened. I am still struggling to really go deeply into it all, but I have made some posts on Instagram and a YouTube video to discuss what I have been dealing with this past year.

Long story super short. My father passed away last year, and I recently was diagnosed with a NEW type of hair loss. This is of course in addition to the hair loss I have had for 24 years – female pattern baldness (androgenetic alopecia). I now also have a variant of alopecia areata. I see it referenced as Diffuse Alopecia Areata and also Alopecia Areata Incognita, I’m truly not sure if they are the same, but they are seemingly used interchangeably online. I had no idea it was possible to have more than one type of hair loss. Well, it is.

My body went through so much last year… SO much. My health suffered tremendously, and I share in the video some snapshots of how my face was looking during this time. This full on assault to my immune system is what is to be believed to have very likely triggered this episode of alopecia areata. It does run in my family, both of my brothers experienced patches of alopecia areata on their beards (now resolved), and I have a cousin in Panama who had alopecia areata on her scalp. It was there, just waiting…

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