Comment

Comment by Minter on February 28, 2019 at 8:06am

Hi all, sorry about being a real Debbie Downer yesterday!  My hair actually came out pretty good and she cut it in a way that it will (hopefully) still look normal while running around the gym and sweating.  She had been razor cutting it and using these scissors that do layers and my hair does not like that- it puffs & frizzes up like crazy and she switched back to choppy layers done by scissors and that should make a difference and make it not a frizzy mess. 

P.S. Jules Australia I'm going to order the Moo Goo travel pack today and see how I like their products, thanks again for posting about the company!

Comment by Minter on February 27, 2019 at 8:02am

Kandy15 yes, that is the thing, to feel normal :-(  I'm a little down because today is hair cut/color day- it is always a shock to see my hair after being freshly washed and under the bright lights at the salon.

 I used to go in and get a trim or color or a whole new haircut and be quite easy and happy about it and look forward to it- now I dread it and go in with a phone full of photos to show her how I want the 'sideburns' cut, how I want the back cut, how to do the bangs etc.  because it is all smoke and mirrors to disguise the loss!  To make it even worse I started a new workout program at the gym and it is hard, so I sweat, a LOT and I'm so embarrassed about my hair- I spend half the time looking in the mirror praying that it is not pushed too far back from my forehead or the sides are still covered.  

I feel like I need to do these workouts and really anything where I sweat and/or my hair would be blown around or wear a helmet or whatever.  It all needs to be done now before the loss is so bad that I can't hide it.  Sort of like live like you were dying, it is actually a lot like that- I feel like I am living until a part of me dies, the old me with real hair dies and then it will be a completely different life and lifestyle because of my stupid hair or lack of and stupid FFA.  

Comment by Kandy15 on February 25, 2019 at 12:32pm

Thanks CurlyK.  This helps so much in just trying to figure out how to move forward in order to look and feel somewhat normal.   

Comment by CurlyK on February 25, 2019 at 12:28pm

Hi Kandy. In addition to the receding hairline, I thinned out alot on top through the crown. I had a mold made that goes from front hairline to crown. It’s like a cap for your head similar to a wig. Yes, they had to shave some spots where the edge of the cap gets glued to the scalp. As far as cutting and coloring your bio hair, they can keep that trimmed up to match your overall hairstyle and they can color it too. They do this coloring of bio hair when your bonded piece is not on your scalp. Hope this helps!

Comment by Kandy15 on February 25, 2019 at 12:20pm

Hello to all and as always, thank you for the great information on so many things that we encounter with this crappy LPP/FAA.  My hands were super itchy this morning - the first time I have had this problem anywhere besides my hairline.  I rubbed some Calendula cream on them and they felt better right away. 

I'm having (another) really down day today.  It seems that no matter how I style my hair all of the balding areas stick out like glaring headlights.  The sides of my head, my temples and my receding hairline is getting harder to camouflage. 

I have checked into bonded hair for those areas.  My question is for those who have gone the bonded hair route.   Did you only have a hairpiece made and bonded for the front and sides?  Did a portion of your head need to be shaved in order to properly bond it?  What about having the rest of your bio hair colored and cut?  How is that accomplished when you have a portion of bonded hair?  So many questions, I know.  If anyone can shed some light on this process, I would really appreciate it.      

Comment by Halfbakedwho on February 25, 2019 at 10:29am

Hi everyone

back to work and life here. I have come to realize I must have LLP - my eyebrows remain but I am getting other bald spots further back in my scalp. My mom is sending me on the NasalCrom (I think?) and there is a thread on FB on an immunosuppressant for rheumetoid issues (sorry can’t spell) that could maybe be not too nasty...

thank you all once again for just being here, will be back later.  ; )

Comment by Minter on February 25, 2019 at 8:14am

Jules Australia, after reading your post I went and googled Moo Goo and it is available here in the USA both through their site and on Amazon.  Looks like good stuff so will bookmark it to give it a better read later. Thanks for passing it on!

Comment by Jules Australia on February 24, 2019 at 9:37pm

Curly K, like yourself I haven't used any medication  (other than in first year a corticosteroid on scalp) which did absolutely nothing for me. After extensive reading/research I just don't believe there's any real efficacy or cosistency n their effectiveness, & the side effects concern me (short & long). Having said that, if some feel from using them, that they've found relief from symptons of this rotten condition without side effects, then that's a good thing. My Mum had breast cancer in her mid 40's so am reluctant to try dutasteride &finasteride. Anyway I use products from a company here (Auzzie land) called Moo Goo; shampoo&conditioner (no harsh chemicals, silicon free,sls free)& a scalp cream, made from natural oils, active   ingredients ie coconut & olive oils, plus almond, melaleuca, lavender, rosemary oils etc. Many people who suffer from eczema,  seborrheic dermatitis & mild psoriasis use it as a natural alternative, (it is marketed as "symptomatic relief of dry& inflamed skin around scalp, ears, and along side of nose"), made in Aust, not sure if they sell to o/seas. My husband uses it for seb dermatitis. It's by no means a cure & may not work for all, but I've found the shampoo/ condit is gentle to scalp & hair, & the scalp cream somewhat soothing, altho to a limited extent, so by no means a cure.Thx for other suggestions from the ladies here, I should give them a try. I find the itching & odd scalp/skin feeeelings (anywhere from mild to intense)are one of the most haunting & distressing symptons of this disease. I have also had an incredibly itchy neck rash twice (?maybe 3 times))over the last 6&half plus years living with this. And the last few weeks had a pinkish itchy eyelid & itchiness along eyelids/eyelash line where I barely have any eyelashes left to write home about! Also the non-existent eyebrows area & along sides of my face sometimes feel niggly itchy. Why is that ? with no hair there (no arm leg hair all gone, face eyelashes/brows pretty well zilch); maybe the nerves surrounding the 'on the way out' follicles under the skin are activated on/off during the process ...... I wish it could be explained scientifically, cause it just sometimes feels sooo freaky. I'm one of those people who needs an informed explanation. I have learnt more about this disorder from the ladies at this forum & by doing my OWN research, as my GP ( whom by way is a lovely lady doctor -gr8 support) knows little about ffa/lpp); and the 2 derms i've seen, obviously were pretty ignorant on the subject. If it wasn't for this forum/site I would feel much MORE helpless living with this, than I would have without all of your input,  thankyou all for listening!!  Xx

Comment by CurlyK on February 24, 2019 at 7:26pm

Great input everyone! Thank you. I’ll give these a go. 

Comment by illustr8r on February 24, 2019 at 3:55pm

@CurlyK Also, maybe boost your B-12 too. Not crazy amount but 500-1000mg a day. Low B12 causes itchiness and hair loss. It was part of the puzzle for me to get this mess calmed down. I have to take 500mg a day because I have a deficiency.

• ‹ Previous
• 1
• …
• 34
• 35
• 36
• 37
• 38
• …
• 507
• Next ›
• Page