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RobynCS

Female

Albany, NY

United States

Profile Information:

Relationship Status:: Single
About Me:: I'm a single mom of two high school children. I've had alopecia for 8 yrs and now it's just about AT. Went to the NAAF conference in Indy. Next best thing to living in Italy...

I found a good acupunturist too this past year. He really helped me emotionally and I went to him for herbs (chinese, ha) for about 8 mo. Now, Im tired of taking 20 capsules a day and spending so much out of pocket cash on pills. As for the derm doc, after 8 yrs of monthly injections, then 4 mo. of oral medrol two different periods, i really maxed out my steriod use. I stay on the fosamax and work hard to keep up my bone density. Must say there are no 'physical' aches or pains with alopecia.

Back to my wig permanently until I'm brave enough to bear all. Must say I'm grateful for it and all my friends here.
Do you have alopecia?: Alopecia areata
Are you age 18 or older?: Yes - I am 18 or older

Comment Wall:

LeslieAnn Butler

Hello and welcome, Robyn!
How are you today? Wow, the conference must have been great -- I guess I'll have to go next year.
LeslieAnn

Jul 27, 2010
Kimberly O'Donnell

Hi Robyn! I live in Troy, and my daughter,Isabelle (15) has AA...all her life. I was thinking about trying to get together a support group of somekind in the Capital District....would you be interested???

Aug 12, 2010
LeslieAnn Butler

Oh, I'm so glad my book has been helpful to you!
Thanks so much for letting me know.
I'm in Portland, OR. The weather has been really nice, not too hot.
Hugs to you and your family!

Aug 12, 2010
Kimberly O'Donnell

Hi Robyn, Yes Dr. Schwartz is our dermatologist!! We will definitely be involved in your group!!! Feel free to call me anytime!! 496-6425

Aug 14, 2010
Dotty

Hi Robyn,
So nice to see you on AW. It's a great place to meet friends and talk about anything and everything. So, I guess your kids are still not coming around huh? Well, hopefully someday they will realize that you are still the same cool mom without hair. Miss you!!! Maybe we can plan a get-together some time. It would be cool if Joyce and I could meet up with you somewhere. Big hugs to you my friend.
Love and Hugs,
Dotty

Aug 15, 2010
Kimberly O'Donnell

Hi Robyn, I finally found where to see the rest of your message....Yes, I am in Troy, and know several others that are interested in a support group! This is fantastic! Please feel free to email me at: kodonnell4@nycap.rr.com

Have a great day!!

Aug 17, 2010
RobynCS

Kim,
This is all very good news. How did you find me on here? Did Dr. S. give you my name? He was actually the person who seriously suggested that I start a group. Right now, I'm looking at the EG Library or The Acupuncture Office in Latham. Will hopefully get an answer soon and we can tentatively schedule a meeting by the end of Sept.

Where does your daughter go to school? I have a daughter who will be 15 in Nov. She is going into 10th gr. at Colonie Central HS.

Do you know more local members on AW? Pls introduce me. ttys.

Aug 17, 2010
JeffreySF

Hi Robyn,
How are you? Was this your first Conf? I can't remember....
All is good here with Leo and I. We got some great shots at the Conf! What fun eh?
So yep, I decided after the conf to not shave my head an see what was "Growing On" I had been shaving on a daily basis but I didnt actually think it was going to be this much. I still have 10 white patches which are also shorter and less diffuse than the rest. But hey it's workin' for now.....

Jeffrey

Aug 18, 2010
JeffreySF

Hi Robyn,
Did we meet at the Conf? I'm drawing a blank.
I've been dealing with alopecia for 3 years now and decided to see what was growing. Thats where the 10 spots come in. I'm not doing any steroid injections. I'm just letting nature take it's course through all of this.
Hope you can make it to NAAF LA next year.

Jeffrey

Aug 19, 2010
Matt

Hi Robyn,

This is the place to put up a bald pic. It's safe here! My summer has been great. I think my advice to leading a group would be just to be a good listener and to not try to do too much. Just be present for those that want to speak and be there for them. Take Care, Matt

Aug 24, 2010
JeffreySF

Hi Robyn,
Yes, it's coming back to me now.
So you are starting a support group eh? Thats great!

Jeffrey

Aug 24, 2010
george

Hi Robyn, thanks for the friend request and nice to meet you. Did we meet at the NAAF conf? Anyway, I look forward to getting to know you. Take care and have a great weekend.

Sep 4, 2010
george

Robyn,

Thanks for the encouraging words... I dont think we met in Indy, but I met so many people who knows, we might have run into eachother. I realized the night before I flew out to the conf. that I didnt have a stitch of red clothing except for a rain jacket, so I wasnt wearing my area colors as I should have been. Are you planning on going to the conf. in LA next year? You gotta check out the hotel it looks awsome with this great big outdoor pool ....."Cannonball"! Enjoy the rest of your weekend, hope to talk soon.

Sep 5, 2010
Gail

Robyn, In answer to your question about where I order my wigs.... The auburn one in my photo is Revlon's Scorpio. It's an inexpensive synthetic that I have worn since I started wearing wigs back in October 09 (actually I have 3 of the same style to switch out). You can buy this wig pretty much on any of the web sites. I got mine from wowwigs.com, but have recently found a couple new sites where the prices are MUCH better: namebrandwigs.com & wigsalon.com. I am wearing my new one today (no pics yet) and I got it from namebrandwigs. It's a Noriko "Reese." My daughter saw it for the first time today (she is my harshest critic) and liked it, but she prefers me in slightly longer hair. I need a change of pace now and then!

Sep 5, 2010
Mary

Hi Robyn - thanks for the friend request! I wish I could have been at NAAF in Indy this year, but I'm DEFINITELY going to attend next year in LA. I hope to meet you and lots of my AW friends there. All the best,
Mary

Sep 6, 2010
Caley Vangelis

Thanks! I would love to know information about a support group in Albany.. I think that's great! Keep me posted...

Sep 6, 2010
Gail

When I first started losing my hair last year to the point where a wig was inevitable, I did buy an expensive human hair wig at a salon. It was colored (lowlights) especially for me and cut (kind of) to my liking. I have worn it about 6 times! I don't like it and I could get no satisfaction from the salon. Needless to say, I no longer do business with them. The maintenance (blow dry & styling) is a pain also, and it is very fragile. I have definitely gotten my money's worth out of my little synthetics and receive many compliments on my "hair" regularly. While I envy those who are able to purchase the vacuum wigs and Grippers and the like, I could never fathom spending that much on a wig (several thousand dollars), and also have the expensive maintenance. I need me a sugar daddy ... lol

Sep 6, 2010
JeffreySF

HI Robyn,
Our SF group is pretty awesome for sure.
Happy Labor Day!
I'm smelling BBQ!!!
Jeffrey

Sep 6, 2010
Gail

Ha! I have first dibs on the "S.D.!" lol Thanks for the compliments on both wig and children. They are awesome young people and I count my blessing every day! Have a good weekend.

Sep 11, 2010
margaret staib

That is AWESOME!!! How did you network for my group is still really small. I know they are out there. I figured if I built it they would come (ha ha) but, it still remains small. Yes, school is a little nutty, they went back on the 7th. Now it's soccer soccer soccer, The mini van is going all over. Had my first melt down in like four months after coaching on a windy field the other day. The emotion of feeling like my wig was going to come off and the feeling of the fake hair on my face really just pushed me over the edge. I had a good cry and then it was over. I have to say even though I run this group and I feel great I'm stil still pissed that I lost all my hair. I have these "moments" that come every four months or so when I'm like wtf! Then I get over it. (or do i :)
how is life with you? Kids? Think of you often. xo
Margs

Sep 11, 2010
kaitlin lavin

Thank You, that was really sweet! And yes, I do go to the city pretty often. My brother lives there and I love walking around times square and going to broadway shows!!! You def need to get into the city more often haha!

Sep 11, 2010
Andrea L.

Hey there, thanks for your nice comment and reply to my post. Thanks for sharing your experiences with wig caps. I think I might skip the cotton ones, sounds like they are way too thick. Sorry that acupuncture and steroids didn't do it for you either. You got the right attitude though. I am at the point where I am beginning to think that I should just have fun with the wiggies and get a few hairstyles I always wanted. I ordered a halo wig 2 days ago since I also like wearing hats. Will be interesting to see what that animal looks like, heehee. All the best to you. ;-)

Sep 14, 2010
Sam Sam

Thanks! Its exciting!

Sep 15, 2010
Bruno Manuel Rocha

Pleasure is all mine!!!! Txss

Sep 26, 2010
Christy Ingram

Hi Robyn, Thanks you for the compliment! It was a beautiful wedding! No wig mishaps have appeared on camera...just waiting for the professional photos. I don't think there will be the dread I was fearing! Yes everyday is new and my outlook gets better, and I am having fun changing my hair! lol

Sep 28, 2010
Pat

Hi Robyn, thanks for your comment on my profile page...yes I agree my hb is a good looking guy and yes he's always been very supportive to me. I love him so much. So far I have no side effects on the prednisone but I suppose it's early days yet. I'm hoping to taper off to a low dose over the next few weeks. What dose did you get down to?

Sep 28, 2010
margaret staib

Hello Miss Robyn!!! How are my love?

Oct 25, 2010
margaret staib

LOVE your profile pic. You look BEAUTIFUL!!! :)

Dec 20, 2010
margaret staib

Hello my friend! Wanted to say hi and I was thinking of you! Hope all is well! Golf soon? xo
Margs

Apr 10, 2011
R0BB

Hi Robyn - Thanks for the add !!
Keep smiling :)
-R0BB

Apr 14, 2011
margaret staib

Hi Robin, sorry we were away! :) Call me so we can touch base. My husband is a HUGE dead fan and still goes to DSO shows, phil shows and when the dead comes to town sees them too. We will be in lake champlain on that date but, maybe we can set something else up! xo 631-680-0148
Margs

Apr 26, 2011
R0BB

Hey Robynowitz,
Hows it going ?

Apr 26, 2011