Comment

Comment by Halfbakedwho on February 20, 2018 at 4:08pm

Unless your thoughts in your head have little bitty fire-fingers that you have purposefully caused to pinch and burn out your hair follicles from the inside out, I don't understand how you can blame yourself. If this is the case, then maybe you can blame yourself. ; )

I can think pretty crazy things, however, I don't think that I went and rubbed my head in lichen planopilarus (was in in the soil? Then maybe I did) (kidding), or that it's because I forgot to put a hat on when the volcanoes were spewing ashes in Iceland... 

Don't blame yourself please. 

Comment by Afraid on February 20, 2018 at 3:23pm

So so sorry to hear about your brother in law  halfbaked.  I agree re the blog! Great to hear about your pixie cut Minter.  

I keep reading everyone’s comments and I feel less alone with this silly condition but find it just as difficult to understand and accept perhaps even more because it really doesn’t sound as if we escape from it.  

I range from pretending I have a limited time left to live ...haha... sounds drastic but it does work (it shakes me into feeling being bald is nothing in comparison and makes me want to make the most of every second) to being in denial that I am losing my hair which buys me some time but makes me feel worse when I feel or see the bald areas and from thinking this is the best it’s going to be so try and make the most of it before I need a wig. 

What I currently find most difficult is the rate of progression of loss... rapid and extensive since September.  I re-read the BAD FFA factsheet as if magically I may have missed something important that may help! I have used clobestal now for 4 months & hydroxychloroquine for almost 3 months.  The only hope I have is hydroxychloroquine can take between 4-6 months to effect any change.  However I know it only ‘may’ help slow progression if at all. At this rate it’s unlikely by then that there will be any hair to save where I need it to be saved.  How did this happen?  I blame myself.  

Sorry...self pity strikes again! 

Comment by Halfbakedwho on February 20, 2018 at 2:06pm

Wow, I love the pixie in theory, but am very scared of it as a hair-reality on *moi*. I am so used to having big old hair. Now it’s just old, and confused (big in some places, gone in others), like yours truly. 

I love the way your color sounds, Minter, and I think the idea of glueing down the sides is ingenious. I have a block when it comes to spelling Clobetasol, which is telling I suppose. It’s the same name in French just with the accent. 

I don’t actually *look* at my hair in the middle of the night but what I do isn’t much better - I touch it - I touch my scalp - Now that we were talking about the four fingers or five fingers forehead thing I have been putting my fingers on my forehead - yes- in the middle of the stupid night. No this isn’t helpful. 

Today I went to the post office to get my very first hair pieces that I ordered - they LOST THE PACKAGE. They couldn’t find it anywhere. What does this mean??? (I take everything as a sign). Maybe another balding person stole it?? Every damn person has hair envy. Endemic human illness.

As for a blog, I am flattered, but I love venting on here and getting told I should have a blog ; )

Comment by illustr8r on February 20, 2018 at 1:16pm

@HalfBakedWho I think you should start a FFA blog because you really have way with expressing the feelings this stupid disease brings out. I hope you feel better when you write-because I feel better when I read it. :) All the best to you,I know you are going through a sad and stressful time right now.

@Minter Welcome to Pixieland! Mine keeps getting a wee bit shorter as it seem my temples keep moving further back. I always wonder if people I know wonder why my hair is so short now. *sigh*

Comment by Minter on February 20, 2018 at 9:00am

Halfbakedwho, never look at your hair in the middle of the night, never look at anything in the middle of the night- it always looks worse then it actually is.  I am glad you have the support of your lovely family through this. 

I have stopped using Clobetasol, well that is a lie- I do use it, very, very rarely if there is really intensely bad itching on my arms, but never on my scalp anymore.  For any itching on my scalp I use tea tree oil or cinnamon oil + castor oil (I also use castor oil every night along my hairline and forearms/hands) 

I got my hair cut last week too, I went from a shoulder length long layer bob to all shaggy and spikey hair and there is still length in the back, but it doesn't look like a mullet, it looks like a grown out pixie- she also cut "sideburns" and did a darker color at the roots and blonde highlights and I LOVE my new hair! The shaggy layers hide the thinning hair, unlike when it was longer there was really no way to hide the thinning at my part and if the wind blew, well forget- I was doomed to show my naked front of the ears. 

But with this hair I can make it spiky or softer and a little Got to Be hair glue on my "sideburns" holds them down all day even with putting on and off my reading glasses, illustrated8r, I bet that can very well be part of the reason why hair thins above the ears! So, I am hoping I can get away with this hairstyle for a while.

Comment by Halfbakedwho on February 19, 2018 at 7:11pm

Hi and thank you for the condolences. Tonight - up in the middle of the night - seems my hair is going faster these days. 

Ws it a good idea to read the side effects of the Clobestasol - aïe as we say here- thinning skin, weird purple veins, etc. I put some on behind my ears...

My sons are very helpful, they are lovely kids. My husband is a saint with OCD, but that’s another story. 

I am considering stopping my highlights to help my remaining hair get healthier. This means mouse-brown greying remaining hair. So I don’t know.

Back to sleep, not quite coherent. 

Comment by illustr8r on February 19, 2018 at 5:15pm

@HalfbakedWho My hairstylist told me many of her 45+ year old customers who wear glasses have lost their "sideburns" by their ears (and behind their ears too) from years of putting on and taking off their glasses.

Got my hair cut on Friday and I went lighter with my highlights-so is that a highlighted strand or the skin on my forehead showing through? Ugh.

Comment by Minter on February 19, 2018 at 7:53am

Halfbakedwho, how awful for your husband to lose his brother in law at only 56, cancer is so brutal and I am sorry.

Acceptance of the loss of hair, it doesn't make it easier when you look in the mirror, but it means no more using up valuable energy for endless fighting against something that just can't be beat.  It helps when you have supportive family and friends, & it sounds like you have a great set of kids- oh and I am sure that you rock that headband! :-) 

Comment by Halfbakedwho on February 18, 2018 at 12:43pm

hi everyone

I am in a headband today. I am starting to move towards more acceptance. At least today, at least right now. My hair loss seems to be accelerating, though I admit I have run out of the cortisone this week and haven't been using it, which is probably not helping. I am trying to get used to seeing myself in the headband, my kids say it looks nice (they are very honest kids ; ) ! ).

I notice my hair loss more "all over" - up through the crown it's thinning. It is SO not worth it to me to go crazy over this. I really just want to move on and look for options to hide it. The annoying symptom right now is my glasses are bugging my scalp behind my ears - this started a couple of weeks ago. Does anyone have this? Are my glasses causing more hair loss? Not that I really care that much anymore - it's just going, going, and it's just ridiculous and ... like I said not worth disturbing my hard-fought equilibrium. 

I also have ordered (rather expensive) oils - apparently us curly-heads really should just use oils. Castor oil (apparently the best is Tropical Isle Jamaican Black) Red pepper oil, coconut oil, argan oil... so I will take care of what I've got left. 

I am trying to change on a deeper level (kind of a life-long project lol). Organizing my time, my priorities - my hair looking more or less okay is a priority, but obsessing over its leaving my head (to land in the shower, in my family's food, on the floor, on the pillow) is not. 

My brother-in-law, my husband's brother, died yesterday of advanced cancer at age 56. So, F.. the hair, it's important, but God has made headbands and hair pieces. 

Tomorrow I might be much less okay with all of this, so don't hold me to it  ; )

Comment by illustr8r on February 16, 2018 at 7:37pm

@Yash Yes, it’s an amino acid and the other one (NAC) is too but is made to be more “bio” friendly. This is all from reading about it. (?!?) NAC is given to kidney patients after procedures involviing dyes that can further injure the kidneys-so my family dr thought it would be okay for me to take. We’ll see.

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