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Comment by Anne Louise on April 29, 2014 at 10:19am

Thanks Kath. I am grateful to have this forum to share my frustrations, as I know nobody else gets it like you ladies. My dermatology visit yesterday was rather uneventful, but at least it wasn't cancelled! For now I will continue with the Clobex, Minocycline and Plaquenil and see him in 3 months. I did ask him his thoughts about using probiotics and he wasn't opposed and said they may be helpful in protecting against yeast infections while on minocycline. I then started to blabber about my theory and how probiotics can do so much more, I mumbled about PPARgamma and a case study of a guy with LPP; he nodded and remarked that I've clearly done a lot of reading up on FFA. It just wasn't the place to launch into a presentation as the appointments are so time limited. I'm thinking of writing up a summary of my findings and then mailing it to him...I would love to see more research done on probiotic use for non-GI autoimmune diseases. Of course I'm very busy with my 7,6 and 4 year olds but it is a goal of mine. If nothing else it will synthesize for me all the research studies I've been reading, and if it compelling enough perhaps it is something that can be shared with other dermatologists.

I will let you all know how the tattoo goes tomorrow and if I'm brave enough I may even post some pictures!

Comment by Kath UK on April 29, 2014 at 5:30am

Anne - I'm so sorry you had a wasted journey and felt so fed up.  What a drag for you.    Please will you let me know how the eyebrow tattooing goes?  I'm thinking about it but have yet to find anyone good near where I live. 

Oh ..... and I love your upside down photo. Always makes me giggle.

Comment by April on April 28, 2014 at 12:08pm

Anne, sorry about your experience with the support group!  So disappointing.  Good luckw with your eyebrow tattoos, I'm sure you will be really pleased!

Comment by Anne Louise on April 27, 2014 at 6:29pm

And yes, Celia, I have a notebook I've started that I brought with me. I continue to collect info and maybe something will come of it all.

Comment by Anne Louise on April 27, 2014 at 6:28pm

Thanks Anne and Celia for your encouragement. Maybe I should change my name to Upside Down Anne since I can't seem to change my picture! At least it gives us all a good laugh and reminds me to keep my chin up. Derm tomorrow and tatto Wednesday; I plan to confirm both appointments!

Comment by Celia on April 27, 2014 at 5:37pm

Oh lovely upside down Anne ! That is tooooooooooooo bad ! And you have gathered so much info that you might have been able to share - you must feel so fed up ! Things can only get better and I am sure I speak for the group in that you have added so much to our forum over recent times.  Don't give up or go and eat a bar of chocolate or other things that are apparently bad for us.  So sorry.

Your eyebrow tattooing is something now to focus on I hope.  I am having mine touched up/renovated (!) in June - had hoped for earlier - nearly 18 months after the initial procedure.  You will be so pleased that it will put recent events out of your mind.  X

Comment by Classical Anne in NC mountains on April 27, 2014 at 5:30pm

Anne, I am SO sorry about your group miss.  I know just how frustrating and disappointing that can be.  I wondered about a meeting on a Sunday afternoon -- is it possible somebody just gave you the wrong date?  Well, as they say, keep your chin up -- and in your case you seem to have got that conquered!  I love your upside down photo -- just makes you head and shoulders above the rest of us.  Keep the faith,

Classical Anne

Comment by Anne Louise on April 27, 2014 at 5:20pm

I really need to vent. I've been feeling cursed with this FFA, now I know I am! If the canceled eyebrow tattooing two weeks ago was tough, today was even worse. I drove 45 min to a CARF support group meeting and there was no one there. I even showed the meeting info to the security guard to make sure it was the correct place and he said I was at the right place. I waited 45 min and finally decided to leave. I had email contact with the group coordinator a few weeks ago, so she knew I was planning to come. I sent her an email asking what happened and am still waiting for a reply. I'm glad you ladies are here 24/7... you never cancel on me! Thanks for listening.

Comment by Liz on April 27, 2014 at 4:17pm

Jen. Yes it's the Vesta hairpiece. My wig voucher covers £130.00 towards the cost of a wig, twice a year. If you get one of these, Income support, Tax credits, Job Seekers, ESA, Pension Credit or you have a partial or full help certificate you get the full £130.00. xx

Comment by Debs on April 26, 2014 at 9:13am

GPS are not used to doing wig prescriptions but they do have the authority !!! Mine had never done one before mine. Just advise them to contact the surgical appliances department of the NHS trust and they will sort it out. X

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