Replies to This Discussion

Permalink Reply by Ally W on April 29, 2017 at 11:43am

Hi Annie May,
I'm in the same stage as you, from the sounds of it! I have had my eyebrows microbladed as I gradually lost them altogether. This really made me feel like I had my face back! My receding hairline is disguised to an extent when I go out as I wear my hair forward (it's also naturally curly which helps disguise the scalp areas). I'm thinking about making head bands to wear at the front but unsure if this is a good idea or not. I'd love to find any frontal hair pieces that I could wear comfortably, but I'm not sure they exist or what the options would be in the UK. I've started looking at some YouTube videos for ideas, if that is helpful to you.
All good wishes that you find ways to feel confident x

Permalink Reply by Mel on April 29, 2017 at 12:26pm

Hi, AnnieMay and everyone.
I use Desert Essence apple and ginger shampoo and coconut conditioner and Avalon brand rosemary volumizing shampoo.
At night I rub in solid form coconut oil into my hair line when possible.
I color my roots every 4-6 weeks with henna and indigo I order online from mehandi.com or hennaforhair.com. I really love the color.
I eat a mostly autoimmune paleo diet to reduce Inflammation.
If it is super windy I will wear a hat if possible.

But I thought I would share my latest unexpected health news. I will say first that I have no history of cancer in my family though my dad did have prostate and he's OK now. I will also say I'm fairly athletic and quite healthy. I walk or bike to work every day. And just before being diagnosed I did a big organized bike ride. So all that said (and I've never smoked)early this month I was diagnosed with oral cancer. The first line of defense is surgery and I've had two now. Been battling pain.
Hope to go back to work in about a week as long as nothing is found in my lymph nodes.... still awaiting results.
All that to say..... it puts it all into perspective. Even through all this I don't think I've lost TOO much more from my hair line. But I am just happy to be alive!!! Everything and everyone is more beautiful to me now, inside and out. At this point I am Stage 1 so my chances of long term survival are pretty good.
But I have learned a lot in the past month. Love, helping others and our the things that matter. ...How we look is very much secondary. They may have damaged a nerve in my neck and now I can't smile right. And to be honest I love my smile. After dipping low and shedding tears for a couple days about that I can honestly say.... it is OK.
We can still make a positive impact in this world, and love others, despite how we look.

Thank you for listening and let's all keep our chins up and remember to be truly happy. There's so much to be grateful for -- and happy about!! :)

Be well.
--Mel

Permalink Reply by AnnieMay on April 29, 2017 at 6:46pm

Ohhhh I'm so sorry that you're going through all of this. You're words are inspiring and I will be thinking lots of good thoughts and sending them your way. You're right, there is so much to be thankful for.

PS Thank you for your suggestions. I will be trying them all.

Please keep us updated and take care

Permalink Reply by Mel on April 29, 2017 at 7:54pm

Thank you!
By the way with the henna I order the "Malluma Kristolovino" which acts like orange juice or an acidic liquid. It gives my hair more brown color and less red. Works great on the grays too. You can also call them to discuss the color you are going for and hone in on that. My theory is stay away from most regular household products since they are full of toxins or other petroleum industry derived ingredients. Go for more organic and natural products.
Good luck!!

Permalink Reply by Mel on April 29, 2017 at 7:57pm

I also use castor oil on my eyebrows at night. I believe it HAS helped them to grow back some.

Permalink Reply by Airam-FFA on April 30, 2017 at 1:41pm

Hi Mel

Your post is so positive. I wish you strength for all you are going through. Life is so tough at times.

Thinking of you and wishing you well.

xOx

Permalink Reply by AReg on April 29, 2017 at 6:45pm

Hi AnnieMay,

I don't need microblading right now, but I will definitely do this when I feel I cannot "draw" my eyebrows on any longer. I have a friend with this disease, and her microbladed eyebrows look fantastic. 

I highlight my hair routinely and will continue to do so.  I gives my hair body which helps to hide the thin spots, and it makes me feel better.  My natural hair is a mousy, yucky color. 

One beauty item I cannot live without is the Bumble and Bumble Blondish dry shampoo. I am bald above my ears on both sides and this spray helps to cover that area.  I no longer worry when the wind blows.  I put a piece of cloth over my ear as I spray so my ear doesn't get covered.  I buy the bottle on Amazon, and it is worth every cent of the $38. 

Good luck with your journey!  It is quite a weird experience that is for sure!

Permalink Reply by AnnieMay on April 29, 2017 at 8:13pm

Thank you! I have two bald spots in front of my ears and my temples have receded a lot. I wonder if the Bumble and Bumble would help there? Thats actually where I am the most self conscious in the wind. So curious how it works. I will try it!

And I think I'll go in for a consultation for microblading. It's a little scary but might be worth it!

 

Permalink Reply by Airam-FFA on April 30, 2017 at 3:18am

Hi AnnieMay

I am constantly assessing other people's hairline to convince myself that my loss isn't 'too bad'; I try to also keep busy so as to not focus completely on my appearance, and I hang on to any positives that I can think of: there are lot of other ailments that I could have but don't; my friends tell me that I am attractive, and have the personality and creativity to 'carry-off' various looks - this boosts my confidence; and when I am unable to hide the loss, or can't tolerate how it looks, then there are various systems available to me.

Needless to say, there are times - though getting less - where I dissolve into tears about this crappy condition.

I still colour my hair but no longer put conditioner up to the roots as my hair is now very thin on top of being fine, and the conditioner was weighing my hair down.

It is a bit like the 'Pollyanna' story - finding things to be glad for ...

xOx

Permalink Reply by Nerida on April 30, 2017 at 6:27am

Hi, Regarding Tattoos

I have not eyebrows.  I use to use stick on eyebrows which can look get.  I uses to get mine from 'finial touch' eyebrows.  They are expensive and a pain to attach and really only look their best for a day.  Great for special functions.  I now have mine tattooed on.  It hurts A LOT but if you get a good numbing cream it is ok.  Cosmetic tats are meant to last 12mths but this is not the case for those with alopecia as our immune systems are overactive and basically attack the pigment of the tats.  I get mine touched up 3times a year.  Mine fade very quickly so I use a eyebrow pencil to touch them up everyday.  This isn't difficult because they already have the detail there they are just light in colour.  A firm eyebrow pencil which can be sharpened with a pencil sharpener to a fine tip works best in my opinion.  I like getting them done with the blade as I find the detail is better then when it is done with the tat machine.  I also think it lasts longer.  If you do go down the tat path remember to pay attention to the pre and post care.  You want to avoid bleeding during the tat procedure (look at your food and medication prior) and post care DONT get them wet at all for 1 week and no swimming for 4 weeks.  No one knows unless I tell them that I have them tattooed on.  I wish I had real eyebrows but I find my tats are the next best thing.  

Hiding it

At the moment mine is worse around my ears so I changed my hairstyle.  I use to have long hair which I'd wear in a pony tail and now I have it just above my shoulders so I can wear it out all the time and it covers the loss around my ears.  When it gets worse on my forehead I plan to shave it all off.  Well that's the plan.