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Comment by Bloomingdalekid on April 17, 2019 at 8:40pm

Jules, Australia, 

I have had the scalp tenderness and it hurts for days - then I have a bout of hair loss - mostly off the crown now.  I also get the itchy scalp, but that hasn’t happened much lately.  I live in coastal California, so I don’t have the humidity and heat that you all have in Australia.  I was in Australia in October - wish I had known and perhaps we could have met - I was in Sydney for 10 days and Cairns for 4 days.... I think Cairns is in Queensland, right?  I have my bad days too, don’t let my positivity fool you.  When I take my “helper hair” off at night and see the awful state my real hair is in, I just want to cry.  I used to have thick, full hair - and it started to disappear in 2003.  My hairdresser told me at that time that I was losing my hair and should get it checked out... of course I didn’t think anything about it.  Fast forward to 2007 - and my forehead started getting higher.  My eyebrows are almost totally gone and I have no hair on my arms.  My forehead has receded about 2 inches but I still have my sideburns (sort of).  I don’t have the facial breakout that so many talk about.  I do have the scaly look around hair follicles on my head - so I suspect I am going to go through a shedding phase soon.  I wash my hair in the shower and have a “catcher” in the drain so I can see how much hair I lose every time I was my hair and it is very scary to me - but I tell myself there’s nothing I can do about it so I try not to fret, and put my “helper hair” on when I go out.  I avoid mirrors when I am inside my house.... So, yes, I have anxiety about my appearance too.  I had my bonded hairpiece changed to “clips” so I can clip it on the crown of my head and then I tape the front to my forehead.  With the lace front I can style it about anyway that I want, including pulling it back.  I am going to Palm Springs this weekend where it will be 97F, so it will be a real test to see if the tape continues to hold like they way it will.  Sorry for my ranting.... This group is fantastic and everyone is very open and honest.  We are in this together and we are all at different places in the acceptance phase.  I wish only the best for all of us.  

Comment by KarenD on April 17, 2019 at 8:31pm

One idea I am going to pursue about the excess sweating we have where we have lost hair is perhaps botox.  I have read that people have had botox injections along their hairline and it has helped with the sweating.  I am hoping this is true as I would l love to not look like I have just stepped out of a shower when I get hot and the sweat starts streaming down my face.  Not a great look!

Comment by Tessa on April 17, 2019 at 8:12pm

Jules, Australia,

I understand completely. I live in Sydney if you're ever down here. Not as hot as QLD but too hot for me as I'm originally from UK.

Comment by Jules Australia on April 17, 2019 at 7:28pm

Thank you all for baring your soul with exactly what it's like living with this horrid disorder.... it sure  is a test to maintaining our sanity, & I relate to every single one of your feelings,; the desparation, frustration, embarrassment (at times), doing the things we enjoy NOW as much as possible (with thoughts that as this progresses those things may become less joyful). Bloomingdalekid, I admire your tenacity to, as you have said many times, "not let this disease beat you or bring you down' .... That's what I TRY to keep telling myself, but oh boy, sometimes that is sooo hard to keep up. Your hair looks great & I love to hear your positive attitude, so please keep posting; I was wondering though have you experienced the odd, wierd sensations, painful discomfort & scalp tenderness, itchiness etc with ffa/lpp or just the loss. As Sad in Chicago said, wearing a wig or hairpiece in very hot humid weather can be extremely uncomfortable, especially when those ghastly sensory scalp symptons 'rare their ugly head' ... I have had to put up with this many times  & i feel that besides the never ending 'outgoing tide' (hair creeping back from forehead &all around the ears), the scalp sensory symptons have been one of the WORST things to live with (for myself anyhow)..... as for me these sensory symptons are not just in front, but all over, epec on top; it's amazing when I have long periods of much more subdued scalp discomfort, just how much better I feel (much more positive, can 'get on with it'), so to speak; as when the pain feelings are niggling, you just don't get much of a break from the reminder that the disease is ever present; can be quite an eerie feeling, not good for your emotional 'peace of mind'. I love gardening & exercising but the combination of hot weather, sweating (and its been observed that FFA causes EXTRA sweating on forehead in area of hair loss, Gr8, another wonderful side effect :-(() &wearing a hat .... it's not conducive to an already itchy head & hairline. We had close to 6 months of such hot humid weather here in Qld Australia this past summer, & although my scalp has been much less troublesome for a while now, just 5 or 10mins of being in the heat,without any extra effort makes your forehead sweat (b4 ffa I was not a person that sweated readily) ....  , Well I just can't imagine what it would be like in a wig or bonded hairpiece. Winter would probably be ok, but Summers here, not so sure! And yes I agree, only those actually going through this can truly empathise, understand just what it's like; to live & cope with on a daily basis.so thankyou again for being such wonderful support, Love to you all, my FFA/LPP sisters, big HUGS ..... wish it could be in person, if any of you ever come to Auzzie land for a hol, & you find the,time please look me up, ... but for now HUGS online will have to do :-)))  xxx

Comment by Sad in chicago on April 17, 2019 at 1:46pm

Ladies, I am with  you.  Throughout the winter this is more tolerable (and with my wig, warmer on my head!), but this spring and forthcoming summer I am again faced with decisions, and discouraged by how much I am dwelling on this.  I too have considered shaving my head, but as I am still working, I find this too drastic and also the color of my scalp compared to my face after tanning and just living life for all these years is just too weird

So I keep purchasing and spending so much money on wigs now.  Pieces don't do it and I don;t think even bonding is appropriate as I have lost at least six inches on front going back, almost everything around my ears and now my nape is skinny and horrific too. 

This is unbelievable and had taken so much out of me.  I have to keep working just to pay for my hair!  And, yes, I think about growing older gracefully often and know I will be an old lady with a lopsided wig.  I am uncomfortable all of the time, at home, at the pool, taking walks, with my grandchildren (sleepovers are not fun anymore!) and more.  I know no one really knows and I get compliments constantly on my "cute" hair.  What a stupid joke!

Comment by Kandy15 on April 17, 2019 at 11:26am

Bloomingdalekid,

I so appreciate your positive attitude and how bonded hair had such a good impact on your life.  I am trying very hard to get to the acceptance stage of this disease and what is to come.  It's hard as you well know since you have had to experience the fear of not knowing what to expect and how long it would be before you needed to have the bonded hair.  You look beautiful in your picture.  Your attitude gives me hope, although I'm certain that my heart will always be sad.

I have checked into support groups in my town/county in Florida but had no luck in finding one.  That's when I searched on the internet and found this site which has helped me tremendously.

Hugs and deepest gratitude to all.

Comment by Bloomingdalekid on April 17, 2019 at 10:36am

Louise - 

You are right - this is an AWFUL disease and one that nobody really understands... currently no cure and no defined reason that we get it.  I know that it affects each of us differently and my defining moment was when I had been outside working in the backyard on a hot day,.  My curly hair was out to my shoulders and the top of my head was flat with sweat filled hair and my forehead looked like it was all the way to the middle of the crown of my head....  It was that moment that I decided this wasn’t going to define me and I could do something about it!  Yes, bonded hair is expensive - in the USA about $2200, but can I tell you that it’s the best money I’ve spent in years... it gave me my self esteem back.  I get nothing but compliments on my hair and how good it looks.  Most of my friends just looked at me and asked what was different.  I told them that I cut my hair, got a new color and lost weight..... and as time has passed I have told some that it’s hairpiece. It has given me back my self esteem.  There are also places where you can buy a baseball hat that has hair attached, or even hairpieces that are just meant to be worn under a hat of your choice, and those are much less expensive as they are synthetic hair.  There are less expensive solutions than human hair.... check it out and live life!!!!!  We only have one shot and to live it behind closed doors because we are afraid what others think isn’t, to me, living life.  Maybe find a support group for people with Alopecia - they are popping up all over the country.  We all react differently to this, I understand that, and I am not diminishing your feelings, as I was there about a year ago... but no more.... I bit the bullet and bought the hair.... best thing I ever did for myself!  

Comment by Kandy15 on April 17, 2019 at 10:34am

Hi everyone,

I can relate 100% to the feelings of sadness and despair that has been written here.  This morning I am angry!  I vented to myself in the car all the way to work.  I simply DO NOT understand how I ended up with this disease.  I've never smoked, never have done illegal drugs, hardly ever consumed alcohol, ate right and exercised regularly and here I am, singled out for a lifetime of misery with this disease.  I am so frightened of the future.  All of my dreams for retirement - traveling, spending time with my grandkids, even volunteering at animal shelters have been squashed.  I don't even want to leave my house or have visitors anymore, but I still work so I don't have a choice.  I feel like I'm on a timer too, trying to get things done before I quit my job and become a total recluse. 

It baffles me too as to why, with modern science and cures being discovered for other diseases, that not one doctor/scientist can offer anything to help us.  To truly cure us and give us hope for a future. 

Anyway, this is my rant for the day.  I am so sad and depressed.  I know that all of you ladies are as well.  I pray for all of us every day, for strength, comfort and a cure.  

Comment by Minter on April 17, 2019 at 9:19am

Louise-

This is an awful, soul crushing disease and I don't mean to be flippant at all by saying I will shave what is left of my hair when the time comes- It is just that I have a relative with FFA and the only hair left is really only on the back of her head- so seeing her hair and knowing what is in store for me, I have decided I would shave what is left of my hair when the time comes. I don't know what other option there would be at that point, meaning that is what I feel will work for me- whether that means just being bald all the time or wearing wigs or whatever.  All I know is I don't want to end up looking like her.

I feel sometimes like I am living on a timer of some sort, that I have to do everything I can while I still have "hair" before I end up not wanting to do what I want to do- pretty much only out of embarrassment, because obviously physically I will still be healthy and able to do stuff- but mentally I won't.  I've also realized that I have already limited my life, just socially now it is really only family and a couple craft groups, church and such & also going through a divorce so will also probably never date or be involved with anyone ever again, so dying alone with no hair is also something to look forward to! 

Which now when I see it all written out it all does sound pretty silly, but that is what this disease does- it makes you want to hide away because of shame and feeling embarrassed & to someone with a full head of hair, it would sound ridiculous!  Oh I can't do that because I have no hair.  What?! But until someone, like all of us here- is living this life, no one would understand how it feels :-( & even then it feels different to each of us suffering from FFA. 

I guess we each have to do what what we think is the best option for ourselves and being able to come here and learn and share and vent and yell and scream and ramble even like my post here- but every bit of it helps every single day to get through this, I know it helps me.

Comment by Louise on April 17, 2019 at 8:06am

Hi all of you,

Back on this forum and after so many years with this dreadful disease it is obvious that only women who suffer from this condition really understand you. We lose at lot in life, even if this disease does´nt kill you, But to feel joy? I havn´t for the past 3 years. Like you I hate mirrors, I hate photos I hate dinnerparties. I Always have exuses not to go. I hate to hear "well just get a wig or a hairpiece", even women with FFA say "get on with yourl life, get a wig or shave your head". Shaving it´s out of the question I think I have tried 10 different hairpieces, all of them are quite horrible. The cheapest one are around 500$ - synthetic fibres. A custom made hairpiece with human hair will cost around 2000$ per year.

Whats really make me depressed is when my hairdresser says that my hair is much better, thicker" and so on. It is not! I have a many bald spots on the crown, absolutley no hair on my temples and a very, very high forehead. Even my dermatologist tries to convince me that some spots have  disappeared after three months on Metothrexate. I feel deceived! Methotrexate is a very potent immune suppressive drug with many sideeffects.

Trying to live day by day - but the future really make me horrified. I believe that maybe - if friends and family could be a bit more understanding, every day life would be a little better.

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