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Comment by illustr8r on October 4, 2017 at 1:53am

I went off the AIP Diet while on vacation. I tried to stick to it the best I could but eating out is a toughie-I hate being that person who wants everything on the side and inquires how the chef cooks things. I’ve had eggs and coffee for breakfast. A few salads had cheese that I forgot to ask about leaving off so I’ve had some dairy. I’ve not had any grains or gluten. Guess what? I’m itchy! I also have red dots in my widows peak and on my left side. My skin has gotten bumpy where it looks sun damaged. So, when I get home it’s back to strict AIP eating. Since I didn’t proper reintroduce suspect foods I don’t know which things have triggered a response...*sigh*

Comment by Ana_Brazil on September 22, 2017 at 1:14pm

Hello!

I got connected with a group in San Franciso, from a recommendation from someone here, that I cannot find since I don't know how to go around the site very well. I highly recommend the site and newsletter very informative, encouraging and empowering. I am supporting them!

http://www.carfintl.org/

Best!

Ana

Comment by Jules Australia on September 22, 2017 at 6:35am

AnnieMay I hear you loud & clear & totally relate to your feelings.....i have always been a fairly positive person with a 'live in the moment type attitude', & even though i try really hard to keep up that approach, it simply can at times be such a struggle to achieve. Especially with relentless scalp dysesthesia; it's a gaunting reminder of whats likely to come (more loss & adjustment).... but at the same time we have to try view life by looking at 'the big picture' .....i know its easier to say than do.....but we all only get one chance on this earth.......& somehow have to find a way to cope with this horrible disorder & the challenges it throws at us... i'm thinking of you AnnieMay as i understand your struggle....if i could give you a hug right now i would....it sounds like you have a loving family (as i have also), which is pretty special, a lot more than many have.....if its any consolation it helps me sometimes when i think of my friend (from high school) who died 9 years ago,at 50, from matestatic breast cancer (a long 6 year battle), how strong & brave she was all the way through...and the fact that she never got to see her two young boys (7 & 10 at the time) grow up..... i am not at all religious, but i love  & have a huge respect for nature & the world around us in general.....having said all that i totally get how this disorder can bring you down.....but we r all here to support each other....i have a busy time helping my Mum move over next week, bu t will check back in in few days time to see how you're doing Annie. By the way, what country are you from..... i live west of Brisbane in Queensland, Australia, am 59 in a few weeks.....be kind to yourself...you deserve it!!!!!

http://www.realestate.com.au/rent/between-0-325-in-brassall%2c+qld+...

Comment by AnnieMay on September 22, 2017 at 12:07am

To all: Honestly just being able to vent about things that no one would ever be able to understand unless they are waking up every morning dealing with the realities of this "shitty" condition helps so much. It's so hard (impossible) to explain to anyone why this is so all consuming and so devastating. It sounds superficial but it is so much more than hair loss. I wish I could forget about it but the scalp sensations and skin issues for me are such a reminder everyday. And as a smart woman to not have any clear direction on any way to help or move forward in any way is just beyond depressing. .. . the thought of wearing a wig to my daughters wedding someday makes me cry and keeps me up at night. I have always been such a strong woman but I have no idea how I could ever get through something like that. I thought I was strong but this is testing me in ways I never knew. I wish I had some positive reaffirming things to say but I'm having a bad day/bad week. Not sure what I would do without all of you. . . huge hugs to all of you

Comment by Jules Australia on September 21, 2017 at 11:11pm

Curly K, I understand your sadness....this condition certainly does often feel bizarre & weird......i am also dealing with moving my mum right now from her beloved home (in an independant retirement village) into a larger village where she'll be in a 'serviced apartment' with support on site if needed (medical/nursing etc).... she's 88 diag with alzheimers this year (v sad to watch). I, like you, also chose not to take medication, after much research & finding no effical conclusive evidence of its effectiveness (&due to potential side-effects)........look forward seeing your new hairpieces.....may be needing to travel that route in not too distant future...take care

Comment by Jules Australia on September 21, 2017 at 10:53pm

Annie May your words describe my exact thoghts.....the awful thought of possibly having to worry about & deal with this chronic progressive conditiion for the rest of our lives or at least much of it....at times it just becomes so draining, taking so much joy from our day to day living.....had ffa/lpp for 5 years now.....had couple years (2015,2016) where the scalp discomfort really calmed down to point that much of the time i managed to put thinking about it to one side ( still had some itchiness & at times pain, with v slow progressive loss, but much milder than first couple yrs). Since mid march 2017 when symptons ramped up & hit again, i have become so sick of feeling the uncomfortable itchiness tenderness & pain...it really does SUCK!!! And our weather in Australia is starting to become quite hot.....often seems more aggravated from the heat; & the loss is definitely creeping back from front, around ears & diffusely....... I think most people really wouldn't understand how intrusive this disease can be to our general feeeling of well-being, unless they experienced it themselves....Although the symptons can wax & wane, i think because, for a lot of us, it progresses over many many years, dealing with the scalp discomfort & the continual adjustment to the asthetic effects on our appearance makes it all the harder to just get on with living.....without the everyday ' thorn in the side' type feeling! 

Comment by AnnieMay on September 21, 2017 at 11:44am

Ohhh  Sad in Chicago-I'm so sorry you're having such a hard time. It's not fair that this condition robs us of so much. Like illustr8r said I don't want to "feel" my hair so I pull it back all the time because it drives me crazy. There are some days where I wish I could shave my head but I know I would look like an alien! I hate how much this affects all of us. I don't want to think about this everyday for the rest of my life but I think that's the new reality. People don't understand that this is much bigger than just losing some hair.  

Comment by Lo on September 20, 2017 at 9:25pm

CurlyK... looking forward to seeing pics. It seems you've tackled this thing head on with good solutions. That is terrific! So sorry to hear about your mom. It terrifiea me to think about losing mine. I'm 46 and the youngest of 4 kids ... so my parents are in their mid 70s. I'm blessed to still have them... truly. Thanks for the update!

Comment by CurlyK on September 20, 2017 at 8:58pm

Hi ladies! It's been a while since I posted. Been dealing with my elderly moms move to an independent living place following her fall and rehab, selling her house, my FT job and Hurricane Irma! Whew! As some of you know I was officially diagnosed July 2016. I chose not to go the medication route due to side effects and lack of strong evidence it would make my hair grow back so I opted for the hair piece route. I just got my new hair piece after wearing one for a whole year. I just felt confident enough to post a couple of pictures so take a look. This was a great decision for me as it works for my busy life, and my self-consiousness gave way to self-confidence again. I will add some pics of my FFA once I make it back on to my computer where they are housed. The hair loss has gotten worse since my diagnosis, receded back to my ears, diffused on top and back. Some days I still feel very sad and almost shocked that I have something so weird and rare as FFA. This forum has been a real life line throughout my journey! Hugs to all

Comment by illustr8r on September 20, 2017 at 8:05pm

@SadInChicago I find my pixie cut liberating but also frustrating. My instructions to my hairstylist about my hair now is that, "I don't want to feel it and I don't want to see it." I have more hair loss on the right than the left so my bangs are short and swept to right and my "good hair" is cut down in volume to blend with the sad hair in the front/sides. I like my pixie but gone is the fun of changing hairstyles. When this style changes it just gets shorter and shorter...and grayer.

Hubby tries to cheer me up by saying I'll be wise- just like the Bene Gesserit in the movie, Dune. Looking like a sci fi character was never a life goal...but hubby tries to be a comfort. :)

All the best to you. I'm sorry that you are having a tough day.

((hugs))

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