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Comment by Jen S. on October 10, 2014 at 8:26am

PS - I hated my hair in my profile pic - sure miss it now.  Oh well :-)

Comment by Jen S. on October 10, 2014 at 8:25am

Okay guys - reality check.  I was diagnosed in March - -so, about 6 months of treatment (and I am taking just about everything you can take) once all was up and going.  Still seem to be losing the battle.  I am on the verge of "giving up" the battle.  Am I being too hasty?  I was so very hopeful when this mess began and am now walking around in a bit of a cloud.  I suppose I am looking for a "atta' girl -- hang in there" on an overcast Friday morning in Atlanta.  Thanks for putting up with me, ladies! :-)

Comment by Liz on October 10, 2014 at 7:33am

I'm very wary about all injections, flu and otherwise. If you do have the flu injection Celia do so because you have informed yourself and decide to and not because the doctor suggests it, unless you are in a high risk category and having flu would be a major health risk.

Enjoy your meet up next week.

xx

Comment by Celia on October 10, 2014 at 6:40am

The flu shot apparently does NOT contain live viruses - it cannot give you mild flu just a sore arm.  I will go ahead and have this.  The nasal one they are giving to under 4s in UK does contain live viruses but they have removed the ones that make you sick. 

Comment by Celia on October 10, 2014 at 6:35am

Oh dear - I am due a flu shot in 10 days time.  I had one last year and spoke to my doctor about the probs |(extra) it might cause me - she said it would not be a prob for me - now I don't know what to think.....

If anyone coming to me for our get together next week on the 16th does not know how to get here - please send me your e mail address to my inbox on this site and I will give you directions - don't want to give them here for obvious reasons.  Look forward to seeing you !

Comment by Maddy, California, U.S. on October 9, 2014 at 9:38pm

Hi MJ, Well, I hate to say this, but I definitely think the flu vaccine was a trigger for my FFA. Mine started about a month after my first flu vaccine. There certainly could have been other factors involved....but whatever the mix was, I think the flu vaccine was a trigger for me. My immunologist told me no live vaccines and to be careful with other ones. My endocrinologist and my dermatologist (CARF recommended) both agreed that this could have been a trigger for me. However, I know that all our triggers seem to be different, so if you have not had trouble with the flu vaccine before...it probably isn't one for you. This condition is so crazy because it seems to be so different for everyone. Good luck making this decision.

Comment by MJ on October 9, 2014 at 9:20pm

Hi all, looking for feedback on annual flu shots. I just got a new job and found out that a condition of employment is a flu vaccination. In order to get an exemption, one must have documentation from clergy or medical exemption from a physician. My first flu shot a couple of years ago is on my list of possible triggers of FFA. Has anybody run into this with their employer and successfully gotten exemption, or can anyone assuage my fears of getting the flu shot?
MJ

Comment by Jen on October 8, 2014 at 3:44pm

Hello Ladies,

Just thought that I would pipe in about "THE FRIZZ". I have had difficult frizzy hair all my life. My hair is about 1 inch coils, very coarse and dry. I could never leave the house without a lot of product which ends up making my hair crispy. Recently, I have been using stuff out of my kitchen to calm  my hair. I wash my hair every other day and the night before washing, I usually slather it with coconut oil (olive oil if I do not have coconut). I then put  it in a bun at the top of my head and over the whole thing with a plastic grocery shopping bag and go to bed. Next day, I wash it out but I do not over wash it.  Then I condition, rinse and use a leave in conditioner. By the time it dries, the hair is softer. I never brush or comb my hair because it will result in a huge disorderly afro. If I could get rid of that nasty coconut oil smell then I would use oil in my hair during the daytime also and not leave in conditioner. I hope that this information helps. When I was a child, my grandmother spent many hours massaging all her grandchildren's skin and scalp with coconut oil. I think she knew something. 

Comment by Catherine on October 8, 2014 at 3:03pm

Thanks Debs for letting us know about the CARF meeting on the 14th of November. I will definitely go too!

Comment by Debs on October 8, 2014 at 1:17pm

I have followed the same idea as Liz re shampoo. I used organic for about 2 years but recently have gone back to Redken, I also dyed it last week. I have been wearing my own hair increasingly, with my wide headband/silk scarf round the front hairline. I am wearing a wig to work but in my personal life I am wearing myown hair as I have got used to 'styling' myself now.

Friday 14 Nov CARF hold their 2nd London patient support group. I went last year. If I am not working I will pop along.

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