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Comment by Afraid on March 1, 2019 at 1:03pm

Hi, my eyes itch too!! I google obsessively.  I wonder about other autoimmune diseases which on top of losing my hair and potentially having awful skin would completely tip me over the edge so I rein myself in, try to stay in the moment (or have my head in the sand)  and make the most of every day!!!  Definitely not  easy to do, but our collective highs and lows and your ongoing virtual support helps massively! Thank you 

Comment by Kandy15 on March 1, 2019 at 12:43pm

AnnieMay, that is a really great question.  My hands and arms have really been driving me crazy with being so itchy.  This is a new thing for me just over the past couple of weeks.  I thought it was the change in weather, then thought it was because I started taking Plaquenil a couple of months ago and maybe it's just getting into my system.  Then I thought it was my age (61).  I don't see a rash and the only area that is effected right now are the hands and arms.   I bought some Calendula Cream which seems to help.  I did some research yesterday and found that Natural Colloidal Oatmeal can be soothing so I ordered some lotion with the ingredient in it from Amazon. 

I'm anxious to hear what the other ladies on this site have to say. 

Comment by AnnieMay on March 1, 2019 at 11:44am

Questions for all of you courageous ladies: I'm wondering how many of you have issues with your skin as well? Ever since I was diagnosed my skin has been awful. The texture is much rougher now and it feels tight, leather like and itchy? But my forehead where I've lost hair is tight, smooth, white and shiny. It's like my skin is one big scar? 

And my eyes itch so much which drives me crazy. Is all this from FFA or just from getting older? Frustrating. . .

Comment by Minter on March 1, 2019 at 8:11am

Thanks Kandy15 & Jules Australia I guess I was down too because of the thought of this stupid FFA stopping me from doing stuff that I want to do and it makes it even worse as it's not because of a physical limitation but only because of feeling embarrassed and self conscious and it is frustrating to feel like that :-(   & how great it would be to not have to think about HAIR all the time!

I am going to order the travel pack Today from Moo Goo, I am looking forward to trying it all out!  Yay!

Illustr8r I hope your scalp calms down and you hair appt goes well!

Comment by Minter on March 1, 2019 at 8:03am

CurlyK You look AWESOME!! 

Comment by Jules Australia on March 1, 2019 at 6:09am

Oh Minter, when I read your post the other day when you were feeling down, I totally get how this condition  can get to you. Am glad tho to here your haircut turned out ok. I resonate with what you said about the sweating &  the affect it has on the look of your hair. & how self conscious it can make you feel. We've had another incredibly HOT summer here in Australia ( day after day, week after week)this past summer & it certainly doesn't help with the itchiness & scalp sensations. Heat seems to aggravate it all the more! Glad you've been able to get hold of Moo goo.... I really like the shampoo & conditioner, scalp cream, & the protein shot helps with dryness. Let us know what you think of it .... best wishes Jules.                   Ps... Kandy15 ... 'same here', with your description of the emotional struggles living with lpp/ffa, how it makes you feel, the daily challenges, future uncertanties it forces upon us, how it creeps in & messes with our thoughts. Oh to just look & feel '& normal' again (without having to try sooo hard!!)

Comment by illustr8r on February 28, 2019 at 7:06pm

Ugh. One beet red hot ear and two hot spots on my head. Outta the blue. No reason for it that I can tell. Caught a falling hair today too that was twisted like a pretzel-a sign that FFA is active somewhere.

Put an ice pack on my head and ear and did get some relief. This is the thanks I get for thinking I might try overall color on my hair again at my hair appointment next weekend.

Stupid friggin disease. :(

Comment by CurlyK on February 28, 2019 at 2:15pm

Sending love and support to all my FFA sisters on Rare Disease Day!

Comment by 2Dachshunds on February 28, 2019 at 12:59pm

Hi all: I ordered some moogoo and will report back after I use it for awhile.  Here's hopeful it helps with the itchy, creepy, crawly feelings!

Comment by Kandy15 on February 28, 2019 at 12:46pm

Minter, Never ever feel sorry about having a down day.  We all understand.  We all have those depressed feelings from time to time.  For me I think it's because I get so anxious just wondering what the future holds for me with this disease and when I will be in a position to seek helper hair.  Will it be next month, next year, 5 years from now?  It's the not knowing that is the hardest part of being able to cope.  

I'm so happy that your haircut turned out cute and you feel better about yourself.  I too used to look so forward to the pampering of going to the salon for a color and cut.  Now I am always apprehensive and feel blue about going simply because I am in a salon where other clients are having their lovely, undiseased hair   being done and I feel like I am on display with my glaring hair loss.  It always looks worse when it's wet too.  But I feel better when I walk out and I can look pretty normal with the bangs and style that covers the bare sides. 

We all just move forward one day at a time, sweet friends.  

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