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Comment by Halfbakedwho on January 27, 2019 at 8:38am

Yeah, I get the bad scary places too. These days I would like to be able to explore getting injections locally which seems less invasive to me than Finasteride, etc., but I don't live in Paris where they would do this for me. 

I too envy women who have HAIR. The only consolation - when my hair goes and I am wearing hair pieces, my hair will suddenly look amazing ; ). 

I am going to make another appointment at the Dr's in Paris, and maybe we can try something else- again if the injections don't work, or if they leave strange marks, well I will be needing a hairpiece no matter what anyway...

Bisous, and feel better everyone. It's Sunday : ). 

Comment by Minter on January 27, 2019 at 8:32am

illustr8r, I'm glad you got happy results from your hairdresser!  

Kandy15 & illustr8r, I am constantly checking out other women's hair and brows and think how lucky are they and most of them don't even know it :-(  

Kandy15, I hope your day is better today, I really do- days like this are so hard, I've been there and to put it bluntly it sucks.

Lots of hugs to you  :-) 

Comment by illustr8r on January 26, 2019 at 5:20pm

My hairstylist was encouraging today, saw new growth in the unscarred areas and doesn’t think I’ve had any new loss. She was impressed with how much hair I had so it’s growing well thanks to Castor Oil and my other oil. She said right now is a bad time for hair. It’s winter and with the furnace running more the air is dry and it affects your hair. So, I went blonder to hide the gray and to made my bangs appear thicker since they match my skin more. Oh the things we do...

@Kandy15 I’m waiting for my haircut and a lady with salt and pepper hair is there. She is older than me-big thick bouncing hair. Why her and not me?!? It’s a common thing. I look at ladies my age all the time. Do they have their eyebrows? Is that a pencil brow? Oh, she’s got microbladed brows too...how’s her hairline? Her hairline looks like mine from the side. Does she know about FFA?

The torturous internal dialog about hair...some days I don’t think about it and other times it’s 24/7. Up, down...not sure if that ever goes away no matter how accepting of the condition you are. Hang in there....(((Hugs)))

Comment by Kandy15 on January 26, 2019 at 4:56pm

Hi everyone,

Having a really down day today.  I went to do the grocery shopping and noticed all of these women - some much older than me - and they all have their beautiful hair.  I couldn't get home fast enough to hide away in my house.  I live alone. Today I feel like I have a huge boulder tied to my heart.  I miss my happy self.  Now it's hard to find joy in anything or anyone.  I live in northwest Florida  along the beautiful beaches.  Several family members are wanting to make their visits to my house like they do every year but I don't want anyone to come.  I don't know what my hair is going to be doing this summer or if I will be trying to find helper hair and getting used to it.  I look at pictures of myself from just last summer and I have my hair and look so happy.  Now I'm so extremely sad.

I would like to get a bonded hairpiece but there are no locations close to me.  The only one I can find is the one that CurlyK uses in Tampa - 8 hours away.  I still work so it's not an option due to the required monthly maintenance.  There is only one wig store in my area and the ladies there seem less than helpful.  I think they are trained to just plop a wig on someone's head - no muss, no fuss.  Plus they all still have their own lovely hair so how can they even understand my plight and my fright?

I can't for the life of me understand why I got this disease.  Don't drink, don't smoke, don't do drugs.  The harshest thing I've put in my system are birth control pills way back in the day and blood pressure medicine.  I have seen posts about the flu vaccine maybe being the culprit.  I got my first one about 4 years ago and shortly after that is when the rash that would take away the hair from my temples to my ears appeared.  I didn't get another one until this October and lo and behold my front hairline starts with a rash in November.  I've lost about 1/2 inch there over the past two months and it makes my temple area and no-sideburn area look worse.  Hairloss there is about 1-2 inches. 

I am so so so thankful for this site and for all of you. I read comments even from way back when it first started and wonder how those ladies are faring and how they have moved on.  Thanks for listening.  It makes me feel a tad better being able to put some thoughts down in words, knowing that you won't judge me or tell me " it's only hair!" 

Hugs to all of you incredible ladies. 

  

Comment by Halfbakedwho on January 26, 2019 at 2:28pm

Hi - yes there is a place downtown here where they are offering this light/laser therapy - I am wary about the cost though. Erika does this require you to actually go into his office for the treatments every day? 

Did any of you see on the FB group page that there is a new FFA article published online that's very recent? It defines more clearly who has LLP and who has FFA as in they're two separate-related entities. I used to think I was more the straight FFA, but with my current scalp-state, I may be wrong. However, I still have my eyebrows which are thinner but not red-bumped. 

It seems to me that the top/front of my scalp is just filled with those red dots these days - illust8r- and the skin doesn't feel so good either. 

But I'm in good spirits. I may have asked you this before but if you could provide me with a list of American products that have seemed to help you - CBD oil, Aloe Vera stuff, whatever, I would appreciate it. Leaving in two weeks. Probably will lose more hair, because I'm visiting family. There's a reason I live on the other side of the pond, though it obviously didn't save my hair, alas. 

Comment by DW on January 26, 2019 at 10:42am

Erika B that is exciting news about the laser therapy.  I too have been to Dr. Donovan when he used to see patients at Women’s College Hospital in Toronto in 2015.  This sounds like a new break through since I saw him.  I recently have ordered an integrated hair system at a clinic that’s been in business in Toronto  for 40 years.  While I was there I noticed a poster on the wall of a device called a LaserBand 82 (by Hairmax).  The owner said they’ve had some success with our condition and laser treatment.  He mentioned Dr. Donovan had referred some people to him for laser treatment.  How long did you have the treatment before results were noticed?  Is this something you do at home?  Do you purchase the laser cap? Is it costly?  This is exciting!  Thanks.

Comment by Minter on January 26, 2019 at 8:42am

Hi illustr8r,

You are so right, this is a stupid, horrible, awful disease and you are very lucky to have a supportive husband to be in your corner and cheer you on!  I hope you have a lovely day at the salon getting your hair done- it is a great feeling to walk out with a new cut and color after being a little pampered and it will boost you up a bit :-)  

Comment by illustr8r on January 25, 2019 at 9:09pm

Hubby is very supportive. I reread what I just wrote and it might have been misread as sarcasm. I don’t know how I’d handle this without him. We’ve both had our share of random medical issues at too young of an age. Makes you stronger I guess “We’ll get through it.”

Somehow.

Comment by illustr8r on January 25, 2019 at 9:05pm

I was doing so well...but.

Two days ago,I got a tell tale red dot in my left temple. Lately, when I get out of the shower the hair in the front is a dry knotted mess and I’ve noticed a lot more hair by the shower drain. Hubby is so supporting when I feel so low. :( I get my hair cut tomorrow and I hope a trim and highlights gives this mess a bit of a boost. 

Some days I think a wig would solve everything but it won’t since my chin and cheeks are pitted with dents and I miss my eyebrows. Tomorrow I might feel better-today I’m angry and sad that I have this stupid disease. 

*sigh*

as always, thank you for listening. 

Comment by Dianna on January 25, 2019 at 2:31pm

I can no longer access the cannabis product I have been using on my hairline. Does anyone have any recommendations for products that are working for them? Any recommendations appreciated. I have found that the topical application has been very helpful.

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