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Comment by Halfbakedwho on January 12, 2018 at 5:29pm

Hello Agneta, and Rachel and mc, Yash and everyone. Thank you so much for all the information, honesty - all of it.

I am a complainer. I own it, and I try to complain positively and productively, so it may possibly lead somewhere. I don’t always succeed in this endeavor. Sometimes it’s too traumatic, and my thoughts just spin around into rumination. Gets me nowhere at all. But that’s what trauma does - it paralyzes. 

I’m an anxious soul, and I need a LOT of comforting stuff in my life. I also need antidepressants, and sometimes anti-anxiety medicine. It’s not a big deal, and personally it helps me a lot. There are both genetic and family history components to this. Just like my hair, there are many things that are out of my control, but can be helped a bit if I take care of myself. Given that I’m already on these medicines regularly, I’m really wary of swallowing more - like you said Rachel. 

I tried the no-gluten route but it didn’t seem to make a difference. I generally avoid dairy, and eat a lot of fresh foods. I have re-started ballet classes after 20 (!!) years. So that’s good enough for me. 

SO - My sweet and nutty husband lost EVERY HAIR on his body in 2014. Thyroid. Bald as an egg, and bald everywhere you can think of (don’t overthink it ; ) ! ). 

My ex brother-in-law - same thing. 

It’s very late here, good night to you. 

Comment by illustr8r on January 12, 2018 at 5:24pm

Hi Agneta,

I’m sorry that you are having such a difficult time with this mess. We have all been there and have ridden the rollercoaster of emotions that accompany this diagnosis. Some days, weeks even months get easier then one bad hair day knocks the wind out of you again. “At least you don’t have cancer” is a viable statement. However, I was more devastated and wrecked by my diagnosis of FFA than when I was told of my failing kidneys. I adopted the attitude regarding my kidneys that, “at least I don’t look sick” but FFA changes that bit of comfort. It’s a stupid, sad, maddening condition and I wish we all didn’t have it. Try your best to feel your best and visit here often to vent. We do understand this private hell that FFA is. ((Hugs)) to you.

Comment by Afraid on January 12, 2018 at 4:35pm

Hi Agneta

thank you for your post. I admire you for your honesty.  I remember your earlier post when your referred to going to A&E in relation to your panic about this condition.  It helped me enormously because it made me realise that my feelings of abject horror, devastation and despair were completely normal.  Thank you.  I still have those feelings but I keep going for my partner, who is my absolute rock, and my beautiful son.  I have contemplated disappearing so that I can spare them this journey.  This forum is so incredibly supportive and is helping me to fight the fight so to speak and for that I’m very grateful.  Please keep going.  I too think you are incredibly brave. 

Comment by mc on January 12, 2018 at 10:53am

Today I get a little closer to finding out how different chemicals in sunscreen products and other cosmetics affect me.  It's been a weeklong process of testing over 100 chemicals.

Also, in response to husband's reaction to my FFA...When I first got diagnosed eight years ago, I was crying and he said "You're crying because you're losing your hair?"  I felt so vain I did nothing about it for years.  Now I'm turning over every stone to stop this affliction.

Comment by Yash on January 12, 2018 at 7:12am

Helen, I too loved your comment about your husband. I married a man with no hair, so we can be bald together. 

Rachel, I too have decided to opt out if the medication. Haven't told my dermatologist yet. I hate taking even something for a headache.

Yes, it is devastating and I hate looking in the mirror but I guess, there are worse things out there. 

Bald is beautiful. We don't need to hide behind locks.

Comment by Rachel Germany on January 12, 2018 at 6:14am

@Halfbakedwho I think we could sit down and talk all night about the dilemma of whether or not to start the medication, we seem to be at a similar stage in the thought process that is evoked by our "little" (the size differs from day to day)problem.  I spoke to my husband yesterday and had a revelation...I am quite certain that I will not get the medication past my lips, as my daughter said " mum it's against your life philosophy".  She is right! I then said to them both that if I don't go down the medication route I have one choice that will work for me and that is to be a warrior.  Stand up straight and tall arms wide and embrace it.  I will not crash and burn, I will sometimes feel small, I will sometimes feel hopeless and sad but I will be in control because I am a warrior.  @all: I joined this group about a week ago and since then I have read posts everyday.  At first I considered stopper the email alerts but decided against it.  This group has accelerated my acceptance and although I could feel different tomorrow today I am strong and let's be honest today, right now is all that counts when taking our feelings into consideration.  Let us take control, be it that green smoothie every morning, staying away from gluten or disciplining ourselves not to look in the mirror at every opportunity...or all three;). Let's find that happiness that we have in our lives and expand upon it.   

Comment by Rachel Germany on January 12, 2018 at 5:55am

Oh Helen, you really made me laugh (out loud) with your last sentence.  :)) Although it would not be fair to leave it at that because your positive attitude has also inspired, motivated and given me strength.  So much so that I have made an appointment at a 'Second hair' (as it is called here in Germany) salon for a consultation next week. I feel a little more freedom coming back. Thank you. 

Comment by Helen M on January 12, 2018 at 4:28am

Hi Yash. Yes my partner is totally supportive and understanding. He couldn't care less what I look like as long as I am healthy and happy. He loves me for who I am not what I look like. I'm actually sitting beside him on the couch as I type this, with my bare head.  We actually joke about it, then again he has a bit of a wonky face so we are a right pair!!

Comment by Airam-FFA on January 11, 2018 at 10:15pm

Hi Liz

Is the Genomes Project the one that they were doing at Guy’s? I didn’t see the BBC News about it. Do they hope to have the results by the end of 2018?

If it is the research project at Guy’s, I was hoping for the feed back at the end of 2017. 

It always seems to be the Waiting Game - Time - and Time = More Hair Loss!

We need a ‘Trigger’ to be found that Halts or preferably Reverses  this condition :/

xOx

Comment by Airam-FFA on January 11, 2018 at 10:07pm

Hi Halfbakedwho

Like you, I thought that my hair loss was caused by stress, and that it would return once I left my stressful job and found something less stressy! I had spoken to my Dr in the Autumn of 2014 after noticing more and more hair loss over a couple of years - but when the hair loss just continued, I had to push my Dr to get a referral to see the Specialist. After yet more waiting, I was diagnosed at the end of 2016. So I guess, that I have had the condition 5+/- years.

Creativity is definitely part of the way we all cope and get on with this crappy condition (I refuse to think of it as a disease! Apart from the receding hairline I am generally fit and healthy and won’t think of my body ‘having a disease’!)

Have to try to keep smiling!

xOx

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