Replies to This Discussion

Permalink Reply by Leah England on October 26, 2010 at 7:23pm

OH MY GOSH, we sound like Sisters on this matter!!! I too feel the same, about change and I feel pretty secure with myself- sure I get some apprehension about losing my hair, but already Ive started seeking out cool tattoos and got my nose pierced - HA! (and I still have most of my hair- I was diagnosed yesterday officially, but have been losing my hair slowly for 2 years- VERy slowly).

And I TOO feel like- I am not fighting for my LIFE here. Is it worth it to put myself and family through the painful injections, the hope vs. false hope, the grouchy-ness, the HUUUGE list of possible side effects for months and months- for ... my HAIR? I can see doing it to hang onto my life or my physical abilities to participate in life... but Im having a hard time swallowing all of this for - like I said- my HAIR., NOT that I dont value it- it's been THICK, long and beautiful ALL of my life, and I LOVE LOVE LOVE doing it every day, different ways and all that- but then again I keep coming back to the same thought: "Eh" (LOL)

I am struggling a little bit with my family and friends not taking my feelings seriously too. they are all VERY pushy about wanting me to "TRY EVERYTHING" first, as if I'm giving up hope or being negative about it but I DONT feel negative, I just feel like... life is short and I have SO VERY much to give out of WHO I am. How much time do I want to spend feeling bad, in pain, grouchy, tired... to SEE IF it will work (they say the MINIMUM trial is 12 weeks of this crappy treatment) ..

Then again, something TO consider is what IF it did work, even with minimal treatment and/or effort and we could just go right on back with normal life shortly and could have perhaps given up that chance had we not TRIED... then there is also the point that my entire life I have never left ANYthing without giving it an honest shot- and openmindedly SEEING what comes of it. Marriages... friendships... injuries... may as well give it an open-minded effort - I can always stop whenever I want to or whenever I find myself feeling even more strongly one way or the other, right?

I was diagnosed yesterday and start a MILD hormone tomorrow- and will try my first injection treatment next Thursday. If you want, I'd be happy to let you know how I do... and we should keep in touch! I am BRAND new here too... :o)

Leah

Permalink Reply by Cheryl, Co-founder on November 11, 2010 at 12:07pm

Hi Leah, I find there are always more than 1 way to handle a situation. For most of us, it is to just get things back to the way they were. Our families have good intentions, but the hard facts are that in more cases than not these treatments don't seem to work or if they do, after stopping a treatment the hair falls out again. So, family may not yet understand the ups and downs of this roller coaster and that eventually we just have to get off. My family felt the same when I first lost my hair. When I made the decision to stop treatments they thought I was "just giving up". I explained to my family that I was not giving up, just moving on. I got tired of trying to control the uncontrollable, so now I let it do what it wants to do and I live my life regardlessly. I know not all are in the place that I am and I understand and respect a person need to continue to explore their options. For me the cure took some surrendering, and in addition finding the nerve to continue my life how it was before alopecia. My answer was not giving up on happy fulfilled life, but giving up on what was going on on my scalp.

Permalink Reply by Leah England on November 11, 2010 at 12:45am

Dorna, don't wait too long before you decide though, I keep reading that 2 yrs and your treatment repsonse chances are next to zero. I lost my hair so slowly that I waited over 2 years (thinking it was stress) and now my chances are crap. maybe you should just get a single injection in your spot and see what happens since it's so early! I would have had I known what was going on... can't hurt to try it, if it's awful/doesn't work, no harm no foul right?

Permalink Reply by Sharon Mather on January 15, 2011 at 11:08am

Oh my goodness, Carolina - that wa the mot inspirational thing I've ever read! I discovered my bald patches just before Christmas and the doctor told me it wasn't alopecia, it will grow back and it's all in my imagination!!! I went back to see another doctor last week and she told me her BOSS was wrong and that I do have alopecia! I start the injections next Wednesday. I'm losing my hair quite rapidly now and felt really sad until I discovered this site last night. You people on here talk a lot of sense. You're right too - it's only hair! I'm quite looking forward to changing my image with loads of wigs and having fun with them. I'm still a Mum, a Daughter, a friend, a colleague and it would be so much worse if I lost any of those things.

Attitude Adjustment - love it!!!

Permalink Reply by Jennifer Schlueter on February 3, 2011 at 2:02am

Thank you for sharing! I've been newly diagnosed as well, and have been pondering the exact same question! Is it really all worth it? It looks like there are so many great looking wigs out there and they could actually be fun? I don't have an answer, but I'm glad to hear someone else has the same thoughts as I. I look forward to hearing what you decide to do!

Permalink Reply by Leah England on March 15, 2011 at 5:28pm

Oh Alice I was EXACTLY where you are now, when I first started all of this crap too. You are SO wise to be honest with yourself and allow yourself to FEEL the way you FEEL. I felt horrible and desperate too, but was met on most fronts (family, friends, everyone-) with "You should be grateful, there are so many worse things" etc. and so I tried to squash my feelings (add guilt for them to the mix), and it just made me MAD and drove distance between me and the people that I needed support from.

So I called my best friend who's been battling a horrible cancer in her FACE of all things, since we were in our mid-20's, so she never got to be pretty or live any of the life she wanted (AT ALL) and is totally disfigured and crippled from it all, and SHE gave me permission to HATE what I was going through, and cry and whine and bitch.... it's SOOO important! I really believe that part of what triggers this for us mid-life-late-comers is some kind of stress/trauma, so negativity is the OPPOSITE of what we need to recover.

DO IT ALL, Sister, and then you'll KNOW that you turned over every stone, were totally fair to yourself- no matter what. GOOD LUCK!

Permalink Reply by Catherine on May 14, 2011 at 3:12am

I think like the others on here I stopped treatment when it got the point where it obviously wasn't working, and my hair was falling out faster than it would ever grow back. I think if you only have a couple of patches then it wouldn't hurt giving cortisone a try. I had the injections when I was very young, probably about 13/14 and they weren't that bad and although they worked quite well, and in some people would successfully treat alopecia I was destined to go all the way! (my dad is also completely bald) I think the same with the topical solutions, fine on small areas but on big areas for a long time you'll notice some side effects and not feel too great. I've never regretted my decision to stop treatment, but I'm glad I gave it a try to start with. The treatments aren't futile and I think can kick start the process of hair growing back that otherwise wouldn't..whether that stays growing back or not is the difference but the problem is you wont find many people in this group that were successfully treated!

You have a really good attitude to this but once you get to that point of going completely bald its very difficult to go back and you really have very few choices, at the moment you have choices so I think you should consider them carefully. Maybe give a time limit, try treatment for 3 months and see what happens then. Its good that you see it as intriguing to lose your hair and don't fear it, but as you can see from this group isn't always easy to deal with, and once you get to the point of being bald its likely to be permanent so you need to think if that exhilaration will last your whole life. If you're thinking about it from an expense point of view everyone will tell you it's probably more expensive to live with this than treat if you're spending hundreds or thousands of pounds (or dollars!) every year on wigs, permanent make up, eyelashes..etc. Good luck which ever way you decide.

Permalink Reply by holyhairlossbatman!! on July 17, 2011 at 3:12am

Ok. I knew about 2 weeks in that there would be no chasing it for me. Everyone I know had something- some kind of advice, or cream or pill or something. And I already had ruled out some stuff before I even visited a doctor. I researched many treatments and immediately decided that for me THERE IS NO CHASING THIS. Unless you call a wig wordrobe and an eyebrow pencil chasing. What I mean is what falls out falls out. I have had many challenges in my life that I handle with varying degrees of success, but this is just going to be one of them. Don't get me wrong, it sucks, but it's not sending me to an early grave.

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