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Comment by Susan Innes on December 12, 2011 at 12:58pm

Welcome to all who are joining--some of us hoping for snow and some of us not:). Don't hesitate to add some discussions as there is so much to share about this disease...all appreciated.

FM - There are 2 essential things to know about vacuum wigs: expensive and requiring a bald head. So, some of us end up shaving whatever hair is left or whatever grows back. My first one (in this picture) cost $3600. Ten years later a second one cost $3400 but that was because a company rep began buying directly from the New Zealand factory, passing on her savings to us (forming her own company).

There are ways around the vacuums (or cheaper solutions) which will depend upon how much one can tolerate heat and/or whether the skin is highly sensitive. If heat is not a problem, then a wig can be put on hair and if the skin is not sensitive, then a synthetic wig can be in contact with the scalp, etc.

Comment by Figarosmom on December 12, 2011 at 10:28am

Hi Jean! Nice to meet you!!

Susan... I totally agree with everything you said below. Totally. Thanks for sharing about your husband. That really is a horrible disease and way to die.

You are the second person I have seen mention vacuum wigs. I am very confused about what those are. I think I need to do some searching...

Comment by Jean on December 11, 2011 at 6:35pm

Hello Wisconsinites! I will look on this site for any fundraisers/events in the future. Enjoy our beautiful winter.

Comment by Susan Innes on December 9, 2011 at 4:23pm

Divorce has to be much worse; at least, from what I've encountered with my friends. My husband died in April but had suffered with severe emphysema for 8 years, actually losing his battle to either a blood clot or heart attack which was a great blessing for him as he had been declining a lot during the past year with few things that he could still do. Supposedly, it's an easier adjustment for the survivors if it's not a sudden, unexpected death but as you mentioned, there is the emptiness of the silence. (There were many tears over the years as I watched his decline; at least I know now he's no longer suffering:).)

I've always been one looking at tomorrow and missing out on today so as my husband became ill, I struggled with learning how to appreciate each day. One of the worst effects of alopecia is the days, months, and years lost to "counting hairs." We become so absorbed with how our appearance is changing (without any control) that we don't want to involve ourselves in anything else...good or bad.

The truth is that the future may not be there for many of us or it may be far from what we are imagining. If and when the future arrives, we are different people from the person of the past so how would it ever be possible to imagine the effect of something on us?

As the hair disappears, we are changed. The new person that develops has a different reaction to being hairless. And, it's amazing how much stronger we become. Having said that, I will always believe the men have it much easier than the women, especially today.

Remember that a comfortable wig makes a huge difference in the tolerance of the condition. I'd be suffering far more from the disease if not for vacuum wigs which I actually sometimes forget is not my hair..maybe a little senility here:). I also enjoy running a brush through it in the ladies' lounge, making everyone around me envious (wicked old witch that I am...snickering to myself as I do it). But, this is exactly what we need...a chuckle. Let's face it, not everybody with hair has "beautiful hair" so if we can buy it and enjoy it, life is good. Bald is good for some people too; one just needs to find a comfort zone and the anxiety will go away:).

Comment by Figarosmom on December 9, 2011 at 11:24am

Susan. I am very sorry to hear about your husband. When did he pass away? Hairloss is one thing, but when something like this happens in our life, it's just so difficult to cope. I remember when I got divorced. It felt like a death. The new lifestyle. Being alone. It was so hard. I think the first month I cried every night and hid in my bedroom.

That is something I have thought about....wig wearing and wanting a break from it. I mean. No matter how wonderful they have become, they are still not the same as your real hair. It will feel better some days than others. I wonder how about that. As you can see I am very good at "imagining the future." I think this is a habit that truly contributes to my anxiety problem. Good grief. :-)

Comment by Susan Innes on December 6, 2011 at 1:08pm

Living a peaceful existence has been my goal since the death of my husband. Those days when I don't feel anxious or fearful of the future are a welcome gift; the calm seems to be derived from accepting the new lifestyle and making the needed adjustments (very reminiscent of the early days of hair loss). As you say, there will always be bad days but it does help to have a method for coping with them.

It's hard to believe that someone without hair loss could ever understand our relationship with that part of our identity. There are so many "little traps" that we don't encounter until placed into the situation. Also, any time we have to attach a false part to our bodies before facing the public, it's becomes another obligation....sort of like having to wear hearing aids or false teeth if needed as we grow older (not looking forward to that either):).

As to "wig lover," I'd be one too if it weren't sometimes mandated. I do love the hairpieces, different colors and styles but there are days I'd rather not wear one; however, knowing that I will look better with it on (and therefore feel better about myself), it becomes a requirement....OY.

Aaaah, yes, life just gets better with each year! Believe me, thjs is just training for them "good ol' retirement years!:).

Comment by Figarosmom on December 6, 2011 at 10:14am

I think I am going to join NAAF or whatever you do. I sent an email to the Bald Girls Do Lunch group yesterday asking if I could participate despite having AGA. It was a big welcome. That made me very happy. I would like to read stories and connect with others. NAAF is such a nice organization that way. I am disappointed that AGA doesn't have a similiar organization.
I was reading a psych paper written yesterday by a friend of mine on wigsupport. She has a blog. She doesn't suffer from hair loss but has chosen this as her topic of study. She's a big wig lover. Anyway. Reading that paper really brought it home how little the psych world knows about what we go through and how they are just starting to address the issue.

I agree about sound judgements. You can't make them when you are going wacky and will buy anything. I also honestly think much of the stuff like rogaine, is largely ineffective in the long haul.

I like walks too. I stopped exercising because I hate washing my hair. Until I get strong enough again to do the washing without worrying...I probably will stick to walks.

I think I universally that it does get better. But we will still have those days where it will get to us. I would be happy to just be able to live again.

Comment by Susan Innes on December 5, 2011 at 1:30pm

With alopecia, maybe the more difficult times are always determining whether to remain in a dark corner or throw out a rope, hoping that someone will pull us out:). Sometimes when I feel its best to hide, a friend will call and coerce me to join her somewhere which usually has good results. As always, laughter remains the best medicine and learning to laugh at our bald situation is a good healer. Still, this "look" would be intolerable without knowing others who are missing hair, eyebrows, and eyelashes; these contacts are the only ones who truly understand. The NAAF magazines and the conference are great reality checks, sometimes bringing tears and other times, smiles, but they confirm that all of us are compromised yet able to find peace through our friends.

Exactly! The medical field has no answers right now and all of us have faced some of our worst "lows" in the clinics where there is little time for compassion (or understanding of the emotional trauma of this disease). Of course, there are always exceptions like one nurse that had a sister with the disease.

Hold onto your money! I always recommend cheap temporary solutions in the beginnings of the disease. This is an ongoing journey where hair often comes and goes and the most important part of making any decisions about investments is waiting until sound, wise judgements can be made. While in the early stages, we want quick fixes with relief from the pain but there's nothing like that available.

When possible, I always recommend hats and long walks:). Hats or wigs to protect our heads and camouflage the bald spots, and long walks to clear our minds of negativity and enlighten our spirits. Exercise always helps. As we pull out of the initial depression, we can return to the activities that made us feel better about ourselves.

Everyone will tell you that it will get better...because it does; however, that doesn't mean that all hair days will be good. It's just that the bad hair days are not as devastating.

Comment by Figarosmom on December 5, 2011 at 11:20am

That makes sense. I know I vasciallate between wanting to hide and wanting support. So that really does make sense. I was hoping to connect with those who have moved on and what the process was like for them I think there is a lot to be learned from that.

I also agree the newly diagnosed need help. I know there is NOTHING in the medical community. So the person is left to wander around trying to figure out what to do. You can get roped into stuff that is just a scam and waste a lot of time and money on those things.

I am searching for that person to connect with...I hope I will find them and it will make a big difference.

Comment by Susan Innes on December 2, 2011 at 11:54am

From others who have shared their stories at the NAAF conference, it appears that people stop attending meetings when their alopecia situation changes and/or they are strong enough to live without outside support. The groups that survive are composed of people who have made a friendship outside of hair loss and/or are lead by a "pair" of some sort (friends, significant others, or spouses). Although I've never attended Hospice grief support groups, I have witnessed similar circumstances with my friends who were widowed and actively engaged in grief counseling sessions; they leave as soon as they are stronger.

The problem is that there need to be people available for the newly diagnosed. I am forever grateful for a kind lady in Long Island, NY, whom one of my close friends located on the internet. We didn't have support groups then and the internet was a fairly new thing. When I called her, she spent an hour on the phone listening to my story. It's good to remember these special people as we can easily forget our own meltdown:).

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