Comment

Comment by Celia on March 17, 2014 at 4:50am

Debs - I just read your post on Jen S' discussion.  Interesting we are both not taking the meds.  Lymecycline did not agree with me at all in that it gave me tummy ache each time after I took it.

I won't go to the GP any more, I'll go to a different one.  Wouldn't you think that if they didn't know about a condition, their professional curiosity might lead them to find out ?  I guess they encounter this so infrequently................ x

Comment by Debs on March 17, 2014 at 3:23am

Hi C, I had a terrible experience with a GP at my practice when I was first diagnosed. It added greatly to the shock of the diagnosis and I wrote a letter of complaint to the practice manager. It is galling when this group shares valid medical info given to use by our derms and by CARF newsletters and other respected medical sources.

It is very unprofessional of your GP to speak to you like this and he could have learnt a great deal about FFA from the ladies in this group.

I hope you feel a better now after this unpleasant incident. X

Comment by Jules UK on March 16, 2014 at 3:29pm

How infuriating! I wonder how clued up this GP is on our condition and the range of treatment options we're faced with, none of which have any tested evidence to back them up. C, it's understandable you were upset.
Of course I'll be pleased to type up an agenda. I'll keep an eye on posts here for suggestions. X

Comment by Celia on March 16, 2014 at 3:18pm

Hello everybody.  I am still reeling from a very negative meeting with my GP 10 days ago.  He was very dismissive about any form of forum/they don't know what they're talking about etc etc.  He was very animated to the point where I said that I had to leave.  He felt that any info we have on this 'kind of forum' is probably incorrect etc.  I was very upset but managed to leave with dignity until I got to the car. I wonder if any of you have hit a GP brick wall ever ?

Jules, I wonder if you might be able to type up an agenda for next Sat - my WORD facility is gone since I actually use it so little. Thank you in advance !

Perhaps over the next 2/3 days those of you who are coming over next Sat might like to let us know agenda items.  Please, if anyone does not know directions - let me know via this site. So looking forward to seeing you all - wish we could be meeting up in better circumstances, but I will try to make the day pleasurable for you.  If there are any dietary requirements please let me know and I'll try to make sure you have whatever you need/like. xx C

Comment by Jen S. on March 14, 2014 at 10:01pm

Thank you MJ and Jules.  I can't tell you how much I needed to hear from y'all.  You are both spot.  MJ - I think I will look into the book.  I am looking forward to talking with you though out this.  Long day of tears and worry -- so, I'll write more later.  It's 10:00PM in GA.  Good night and take care.

Comment by MJ on March 14, 2014 at 7:22pm

Hi Jen, I have two little girls, ages 11 and 8, and my little one is always telling me I am beautiful no matter what. I was so upset with my dx in December that I couldn't eat and became obsessed with all things hair related. I am still obsessed with everyone else's hair, and certainly have small moments of self pity, but with the help and strength from this group, I decided to take all the action I could to combat FFA. I am following the standard medical protocal, but I think the thing that has helped me the most is coompletely overhauling my diet and mindset. I started following Dr. Weil's anti inflammatory diet (learned about it from Debs) and started looking into alternative medicine. I started by reading Spontaneous Healiing by Dr.Weil and just did alot of reading from there. I decided that know one knows what triggered this, so there is no reason to believe I can't untrigger it! During the past three months, my focus has been on getting the healthiest I can thru diet, exercise, and breathing exercises. My head is in such a different place from where I was just three months ago. All the cosmetic options I have learned from these ladies has also reassured me that if I lose too much hair or my eyebrows, there are really good options available. One other point I will share with you. I had breast cancer four years ago and handled a mastectomy and reconstructive surgery much better than hairloss. Just so you get a sense of how bad I took this initially. You can and will get past this point too!
MJ

Comment by Jules UK on March 14, 2014 at 6:19pm

Hi Jen, I'm so glad you found us too. This forum has been a huge source of support. I remember well that "screaming inside" feeling you probably have right now. I was diagnosed 18 months ago, having had FFA for 10 years now, as it turns out. I think we've all struggled to find causes and cures; you'll read about them here.... And it's good to feel you're doing something for yourself.
I have only just reached a point where I can look at my hairline without squirming. I think hairloss is slower than I feared at first, and there's always the chance that it could burn out. It has certainly helped my outlook to know that a hairpiece is possible that can stay put and behaves like your own hair. For you, that might still seem a horrible prospect, and you may never need one. There are many degrees to this condition - but its unpredictability is so frustrating.
Where are you? UK? Just be kind to yourself, as my daughter tells me! Listen to your family - they care about you. And have that glass of wine! Jules x

Comment by Jen S. on March 14, 2014 at 4:34pm

Hi all!  I admit that I have been obsessed with this site the last week.  I had a biopsy last week that confirmed Wednesday what I thought was already happening -- mild FFA.  Really - is there such as thing as "mild-forever-hair loss"  Yea!  (sarcasm).

I am having trouble getting past this.  You all seem to have adjusted pretty well.  How do I get there?  How do I accept?  How do I look in the mirror?  I'm only 43.  My 10-year-old son has been telling on a hourly basis how beautiful I am and how he'll love me forever.  My 12-year old son doesn't know what to think and my husband tells me that I am strong enough to get through this.  I am not sure I agree right now. 

I had a series of shots around my hairline and am using Minoxodil 5% and Clobestal (sp?). 

I want to fight this.  I don't really know where to start. So many things that "may or may not work" or that "work for a little while then stop".  Argh!!!  So angry.   I don't drink more than maybe a glass of wine a week, I don't smoke, I run six days a week (though haven't at all in the past few weeks of my personal pity party).  Why me?

Help!  Advice?  Where do I begin? I hate going to sleep and I hate waking up to this every morning as well.

Anyway, I promise I won't rant all the time.  I didn't expect to today -- just happened.  Regardless, I am so very grateful that you started this group, Celia. 

For now, I will continue to linger on the site -- looking for hope and strength.  Take care fellow fighters.  Bye from Marietta GA.

Comment by Jules UK on March 14, 2014 at 3:55pm

Pam, I saw Rob, your hairdresser, today. He was so helpful! I've ordered 2 hairpieces. I'm looking forward to seeing your new hairdo at c's next week too.

Comment by claire on March 14, 2014 at 3:43pm

YES A GOOD POINT WHAT WOULD YOU LIKE ME TO BRING FOR LUNCH?

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