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Comment by CurlyK on May 30, 2018 at 1:13pm

I’m right in between Tampa and Orlando. If you are ever this way, let me know!

Comment by Halfbakedwho on May 30, 2018 at 8:55am

CurlyK I will be in D.C.

My mom lives in Boca though so I may get back down there at some point. I'm from Upstate NY and also grew up in Philly, went to college in NYC, then lived in Maryland, now I live in France (for 20 years now). Where are you in Florida?

Comment by CurlyK on May 29, 2018 at 7:10pm

Halfbakedwho, are you coming anywhere near Florida?

Comment by Halfbakedwho on May 29, 2018 at 6:28pm

I am making up for lost time I think (not having written in awhile).

The thread above on the cannabis tincture is very interesting. 

I am feeling very ambivalent right now. The doctor (the famous one) I saw last February prescribed very little medicine, and I am having another flare-up - and I admittedly haven’t been consistent in following his regimen (steroid lotion and antibiotics). My impression is that he doesnt’ think it’s possible to stop the loss, and b/c he does hair grafts he doesn’t seem to care one way or another (though who knows what he thinks really...). I called about a month back telling him that my scalp was still bumpy and red, and he said it was « too soon » for the meds to have any effect. I found this a bit facile... 

The dermatologist I had before threw the whole diagnostic book of potions at me... did I lose less hair? I don’t know, but maybe having a lot of stuff to put on my scalp made me  *feel* like I was doing the right thing. She also had a better bedside manner, she also wanted to do a biopsy. It’s now too late in the season for a biopsy (she won’t do them in the summer b/c scarring). 

I am scared again - it comes and goes. Part of it is feeling at times that the hair loss happens so fast; other times I suppose I just don’t notice. I am coming to the States in mid-June and will see my sister (who is beautiful and has all of her hair of course) and that could be why I am more upset right now. 

I think I might go back to derm 1...

As long as I’m writing a novel... I will add that I can’t stand hormone therapies (I bloat up, I get irritable, my digestion is a mess), but yet I’m thinking I *should* try that again. 

It’s midnight and I should stop here. There are times though where I just think « how can this be happening, this is just insane, I will make it stop now. » I suppose delusional-denial thinking is about as effective (for me) as anything else, so there’s that... : /

Comment by Halfbakedwho on May 28, 2018 at 4:02pm

And it looks really nice, CurlyK - it really helps to see your picture - it’s extremely reassuring. 

I ask too b/c recently I had to have my foot wrapped in athletic tape, and after about 3 weeks, I developped an allergy and couldn’t use it anymore - an allergy to the glue in the tape. 

I suppose it’s silly for me to worry about yet another thing with this problem, but it’s hard to not worry. Like not thinking about pink elephants or whatever...

Comment by CurlyK on May 28, 2018 at 3:58pm

Halfbakedwho, I will ask about the glue when I go in in a few weeks. I’m not sure about that one other than I can tell you that it’s never bothered me. Sometimes my scalp gets irritated and I have to pat my head sometimes. (can’t scratch it like normal) But it’s never been so bad I couldn’t stand to wear it. 

Comment by Halfbakedwho on May 28, 2018 at 3:48pm

`Hey Plf if it’s any consolation I’m in the same place right now. The little creepy red dots are inflamed on top of my head, and I want ice cream to make it go away. Because it’s 9PM and at night I obsess and ice cream helps. I apply it directly to the red dots, and I swear it works just as well as all that cortisol nastiness. Then when it melts down my face it actually tastes good. 

My humour is a manic defense against depressive anxiety, BTW. 

CurlyK - the thing that worries me - I tend to develop allergies - and I’m worried that I would become allergic to the glue. Another thing to worry about (can I glue it on with ice cream ... sorryyyyyy). So, please tell me that the glue they use is absolutely non-allergenic, right? Please? 

Thank you for your excellent information : )

Comment by Plf on May 28, 2018 at 7:03am

Thanks curlyK, for all your insight and positivity, about to loose another cm on the front of my hairline..grrr, although I have decided not to go down the line of drugs and know it will mean a wig I am still in the fingers crossed mode it's just going to stop aka denial, enjoy the conference and thanks for your feedback.

Comment by CurlyK on May 27, 2018 at 8:19pm

Hey gals! Here's some answers to your questions.

1. Menopause. I agree there has GOT to be some connection. My hair started changing after I had my hysterectomy in 2008. I will ask about this at CARF.

2. How often I take my hairpiece off. Everyone is a little different - it depends on how dry or oily you are. Some ladies need to go in every 3 weeks. I go every 5 - and can honestly go 6-7 (I'm dry). I only have one hair piece. Never heard of having two...?

3. The place I go (Custom Hair Tampa Bay) specifically helps women with hair loss from cancer treatment or alopecia. You can google them and see their website. I found them by googling hair replacement.

4. I still have some of my natural hair on the sides and back but its thin. My hair piece pretty much is what everyone sees now. I'm excited to go be with people who know what its like to live with this - and to hear from researchers and doctors who are trying to find us answers.

Comment by Halfbakedwho on May 27, 2018 at 4:03pm

Hi everyone long time no write, b/c honestly there are times I just want to check out and not think about my forking hair (and watch The Good Place, can you tell?)

Curly K, I am so glad you are going to the CARF conference for us. 250$ sounds normal to me too. How often do you have to get your hair taken off and put back on? When I went to learn about your bonding system, they said I would need two hair pieces. Do you have this too? 

Illust8r; I am feeling more and more numbness on my sides, and the same issue with thinning on top to the midpoint of my head. 

That article is very interesting on the different patterns of FFA. I am in pattern 2 very clearly, with eyebrows, without facial papules. 

The numbness is so weird, so weird... what the hell *is* this creeping crud crawling along our hair follicles? No you don’t have to answer that. 

I admit I am falling off of my prescribed regimen of Clobéstal and tetracycline, mostly from a sort of puttering-out fatalism, and feeling I’m being taken for a fool by the dermatologists, who though well-meaning (I hope) and apparently well-informed (well... maybe) are just throwing crap at me so I feel like *someone* is doing *something*. 

Which is why I’m looking forward to some honest info from CARF. If no one knows what the hell they’re doing I’d at least prefer to hear it from people who are honestly trying to figure this out, rather than those who are covering themselves (and me) with steroids, minoxidil, and various lotions and potions. 

Cheers my friends : )

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