How do you feel about hair loss remission?

[Angela]

I am attempting to grow back my hair. I haven't shaven my head in a few weeks and it seems to be coming in very nicely. I'll know in about six months if my hair is in remission, but in the meantime I must say that I am feeling optimistic about my new growth.
For anyone with Alopecia Areata or Cicitricial Alopecia, we know that our hair loss can go into remission and give us a break. Our hair may start to grow once again and we feel very optimistic about the outcome. I have learned not to become too optimistic, however, because I know that it can come out of remission and the hair loss can start all over again. Its very unpredictable. That is the most devistating part of this type of loss. It can be down right agonizing.
The question in the title of this post was "How do you feel about hair loss remission?" I am asking the question because I want to know if there are any ladies that feel a sense of anger towards women who may be growing their hair back.
I know that we all want to celebrate when one of our fellow ladies has hair growth, but is there a part of any of you that feels resentment about those who are able to regrow their hair because it has gone into remission?
I had resolved myself to being a bald woman and never expected my hair to grow back as it is right now. While being bald was the most freeing and liberating thing I ever did for myself, I also fell into the tempation of being known for my baldness. It is the polar opposite of being identified by my hair. Once again I am stepping out of my comfort zone of baldness and opting to try hair again and I can't help but wonder what others would feel about that. :confused:
Does it make others suffering with hair loss feel worse about themselves right now? Would you feel like I'm no longer a valid person to come to for questions about hair loss...especially if my hair grows in fuller than I even expected?
These are the hard questions that go through my head.
I know that one question that lurks on a few members minds that they have shared with me privately was that if they showed their hair loss or even what they looked like now, would they be accepted if their hair loss wasn't as bad as others on the Network or Forum. It is a good question. Hair loss is hair loss, no matter how great or small and it leaves us all feeling insecure in our emotional healing process.
As my hair grows in, I hope that I will not become less of a valid resource and that others can celebrate with me...because it has taken a lot for me to have the courage to actually let my hair grow again. However, I would like to hear your thoughts about it. :>

[valentine]

Angela,
I can only answer for myself, and that answer is YOU GO GIRL ! :DI am so happy for you or anyone for that matter that is having something good going on with their hair. what ever you do that makes you happy ( grow or shave )is great and if your hair grows ( and I pray it does ) better than ever that would be wonderful as far as I am concerned . we are all in this together , and it hurts whether its a little loss or a lot ! so I for one am happy when someone has good news . Hopefuly I can say that about myself some day ;).In the mean time it I like knowing it can happen.
so enjoy your hair growth and stay with us we need your imput because you will never become ( less of a valid resource ) to any of us .
take care and keep us up on your hair growth :)( thats soo cool to say )
hugs
valentine:>

[Angela]

Thanks Valentine. This is uncharted territory for me. The Network and Forum are like a beautiful appendage part growing out from my body...if I were to cut it off, it would be self mutilation. LOL I am a "Lifer" in this place, hair or no hair.
In my journey though, I do wonder about the feelings of others. It helps me to grow and to also be sensitive to the needs of others on the Network and Forum.

[valentine]

Thanks Valentine. This is uncharted territory for me. The Network and Forum are like a beautiful appendage part growing out from my body...if I were to cut it off, it would be self mutilation. LOL I am a "Lifer" in this place, hair or no hair.
In my journey though, I do wonder about the feelings of others. It helps me to grow and to also be sensitive to the needs of others on the Network and Forum.
you are doing just fine as far as I can see , be happy and the world will be happy with you =)
just my thoughts , again LOL

[VictoriaG]

I feel optimism when I read about a friend's regrowth. I am honestly happy for them, I wish them (you!!) continued success. I love you for the person you are, not because of how much hair you have at any given time.
My hair loss is slow but steady. For a long time, I was reluctant to post pictures of my head because I still do have quite a lot of hair compared to others. But I posted them, because like you said Angela, hair loss is hair loss, no matter how great or small, and it affects ME!
It would never occur to me to stop asking for support for someone who is doing better. I would hate to think I'd ever be that selfish!

[VictoriaG]

P.S. I just got a message from a "friend" who looked at my pictures and said that lots of women have that kind of hairloss that's just visible when you pull your hair back, she'd trade with me anyday. That's the kind of comment that bites a little:(

[valentine]

not sure how to delete posts :rolleyes:

[valentine]

P.S. I just got a message from a "friend" who looked at my pictures and said that lots of women have that kind of hairloss that's just visible when you pull your hair back, she'd trade with me anyday. That's the kind of comment that bites a little:(





sorry about your "friend" s remark , that is why I dont post my hairloss pictures. my loss is not as bad as some but worst than others . to me it is heart breaking and haveing someone poo pah it( hope I spelled that ok LOL ) , hurts.
hugs
:>

[VictoriaG]

Thank you! And if it's spelled wrong - I'm not sure - I don't care, I appreciate your understanding! We're here to support each other, no matter what :)

[kawawa]

Hi,

I am happy to hear that you are having a remission. I have had HL for 14 years and I had years where is was in remission, but it never lasted more that about 10 or 12 months before it would start falling out again and I would develop the shiny bald spots again. I hope you remission last for a long time

All my Best

[Angela]

Hi,

I am happy to hear that you are having a remission. I have had HL for 14 years and I had years where is was in remission, but it never lasted more that about 10 or 12 months before it would start falling out again and I would develop the shiny bald spots again. I hope you remission last for a long time

All my Best

Thank you, I try to stay optimistic about it, but I do know how unpredictable it can be.

[Angela]

not sure how to delete posts :rolleyes:

Which post do you need deleted?

[Coco]

Angela, What great news! I hope it keeps coming in quickly and you experience permanent remission. I do find it hard to believe that anyone could feel resentment if someone experiences regrowth. I would feel nothing more than happiness for them, After all one person having success means there might be a chance for any one of us. The only thing that would anger me is if they didn’t share their success. It really lifts our spirits and gives us hope to hear good news.

[Angela]

Angela, What great news! I hope it keeps coming in quickly and you experience permanent remission. I do find it hard to believe that anyone could feel resentment if someone experiences regrowth. I would feel nothing more than happiness for them, After all one person having success means there might be a chance for any one of us. The only thing that would anger me is if they didn’t share their success. It really lifts our spirits and gives us hope to hear good news.

Thanks hon. The pictures I took today of my hair tell a different story. I do have a LOT more hair, but it still isn't going to be enough. :eek: That's sad. My head would look a lot worse without all the new growth. I do smile when I see all the white hairs coming in though.

[Angela]

sorry about your "friend" s remark , that is why I dont post my hairloss pictures. my loss is not as bad as some but worst than others . to me it is heart breaking and haveing someone poo pah it( hope I spelled that ok LOL ) , hurts.
hugs
:>

It seems to be a common problem among women. Many of them think that by saying that our hair doesn't look as bad as theirs, that they are making us feel better. It actually makes us feel worse because we feel minimized. All of the best intentions are meant by making a compliment like that, but in the end it is actually more hurtful. :(
I hope more women who want to post pictures of their hair loss will do so without fear of another making light of it. It takes a lot of courage to post pictures of how we look.

[kawawa]

I am so sorry that may have been me. I meant that in the nicest way. I think your hair looks great and I totally understand how you could take that wrong, but what I meant was lots of us have our hair loss start the way yours is now and gets worse. I was remembering when I had enough hair on top to hide the hair loss on the sides. I just meant that I would go back any day to when my balding could be hidden by leaving my hair down. I guess it wasn't until I lost the ability to hide the loss that I really appreciated the little bit of hair I did have. I actually can see your hairloss and understand because mine was so much like yours a few years ago. Take Care

P.S. I just got a message from a "friend" who looked at my pictures and said that lots of women have that kind of hairloss that's just visible when you pull your hair back, she'd trade with me anyday. That's the kind of comment that bites a little:(

[VictoriaG]

No no no, It was not you!!! Honest! It was on the Network, not here on the forum, You said nothing wrong! :)

[Angela]

I am so sorry that may have been me. I meant that in the nicest way. I think your hair looks great and I totally understand how you could take that wrong, but what I meant was lots of us have our hair loss start the way yours is now and gets worse. I was remembering when I had enough hair on top to hide the hair loss on the sides. I just meant that I would go back any day to when my balding could be hidden by leaving my hair down. I guess it wasn't until I lost the ability to hide the loss that I really appreciated the little bit of hair I did have. I actually can see your hairloss and understand because mine was so much like yours a few years ago. Take Care

Hi hon,
It wasn't you. There are a few women on the Network that have opted to remove their photos because of comments that were meant to be compliments. The incident that Vicki mentioned happened on the Network with someone else.

[kawawa]

Oh, good. I am glad that it wasn't me. I posted a photo for Victoria on my photo page so that she can see that we are sister's in hair loss.

[Angela]

Hi,

I am happy to hear that you are having a remission. I have had HL for 14 years and I had years where is was in remission, but it never lasted more that about 10 or 12 months before it would start falling out again and I would develop the shiny bald spots again. I hope you remission last for a long time

All my Best

Hi,
What kind of hair loss were you diagnosed with? You mentioned that your hair has gone into remission before. :)

[kawawa]

Hi,
What kind of hair loss were you diagnosed with? You mentioned that your hair has gone into remission before. :)

I have no idea what type of hair loss I have and while it went into remission for a few years I never regained a lot of it. I had one great regrowth in late 2007 and then I lost it with a vengence. Today, when they take my topper off I don't see the glaring balding spots but it is still too thin.

I have a lot of photos of the loss and growth and how it looks today, but they are not photos I want to post. I don't kow if I can send those somehow if i send a private message.

I literally could not even speak about it to anyone. I could not bring myself to say the words not even to a doctor. It took my 13 years to say one word to anyone about it and then the doctor blew me off, I was so devestated that I search for natural remedies, but nothing worked for me. She did a few blood test but everything came back normal. I look back now and know how much I was suffering in silence all those years. I still don't speak to anyone about it, but at least I found a solution.

I am super healthy and eat Pryamid foods in correct portions.

I exercise, drink 40 ozs of water a day and don't suffer from depression. I do however have chronic heart burn and thought for a while that the tums was causing it. I them up for 8 months and suffered both heartburn and hair loss that was miserable. I take prolisec now. My girl parts work perfectly so I think it may just be heredity. The women in my family all have the same type of hl just at different levels. It is all really hard to figure out and that is why I just gave up and got the topper.

Your regrowth looks great, it this a first.

[Angela]

This is the first time my hair loss is going into remission. I have in the past shaved my head, let the hair grow and then shaved it a few more times, but new growth was never a part of it. I would shave it all off to see how much damage was done by a flare up and if I thought the plaques were small enough, I would try to grow the hair I had left back. Usually it would just start falling out again and the process of shaving it all off would start all over again. It was only last July that I finally accepted my bald look as an option. Before that I would NEVER go out bald and I rarely let anyone even see me that way. I always either wore a wig, a head covering or was in the process of growing it back.
I had one bout with Alopecia Universalis and that was horrible. My hair did come back after that. I thought for sure it was going to be permanent or close to that. Many people once they reach the Universalis stage end up staying that way for years. But my hair did grow back after that.
This time around, the triggers that cause my hair loss to flare up are non-existent (unless there are other triggers I'm unaware of...thats always possible) and so since there is no mold here that I am allergic to, POOF here comes the hair that has been missing for a long time. I had been literally living in moldy homes for the past 5 1/2 years.

Ok thats enough of me...
You mentioned that you have heartburn and also that you drink 40 oz. of water a day. Are you drinking fluids with your meals? It might help if you don't drink any type of fluid 30 minutes prior to eating and at least an hour after eating. Fluids can upset the acid balance in the stomach. If you're eating proper proportions of food, than it could be your fluid intake during meals.

[esmerelda]

Angela, you've hit on a topic that has bothered me for a while.

Sometimes I feel very uncomfortable answering questions about minoxidil - and relaying my positive experience with it. I feel like I have no business doing that (sometimes) because many have had a bad reaction or no reaction to it, people don't like or can't use it, and there are people who still lose hair no matter what they try. I worry that it might make people resent me because I found something that works for me, but I WANT people to know that it CAN work so that people aren't afraid to try it (if its appropriate for them) and maybe it will help others too. Being on the network gave me the courage to keep up the routine - which was my BIG problem before - sticking with it. The support of so many people helped me get to the point where I stuck with it, where I hadn't before. I didn't think I'd have long term success, but I'm going on my seventh month with it and being here has helped me to grapple with the possibility that it wouldn't work and I would need a topper, or a wig, or to shave my head. I accepted these things and learned about them and then hair loss didn't seem quite so scary, especially when there were so many other women here going through similar scenarios.

People come here and they are so distraught about their hair loss and understandably so; maybe the last thing that some of them want to see are posts about my regrowth when they have none or worse, view pictures of it. Also, I would worry that people would view my hair and expect to get the same results but then NOT get those results and feel misled /hate on me.

I'm NOT looking for sympathy or for anyone to say 'there, there' or to be coddled. I am just sharing how I feel sometimes and I worry that I might inadvertently offend someone when I speak of my good experience. I can't control the reactions of others, and when it comes to hair loss, I realize the emotions run deep and raw.

I share my positive experience in the hope that maybe others will be encouraged to try it, and that they, too, will see some success. For example, maybe for one person, it will only stop their shedding but not regrow hair, but maybe for that person, that might be enough of a solution to help them get through it and make them feel happy again. Conversely, in someone else, it might only stop their shedding and that might not be ENOUGH for them.

[Angela]

Hi Esmerelda,
Thank you, thank you, thank you! I LOVE what you wrote. I hope that you can post pictures of your regrowth and share all your experiences with us. It is so important and offers hope! Its true that it may not work out just the same for other women here, or that they may have a bad reaction, but each person is very different and we can't control that.
One thing we need to see more of are women that have experienced positive experiences from different treatments because it all seems so futile at times. Some women may drop off the Network for a while because they have had growth, and that is when we need to see them the most. I want to be able to post my growth pictures, because my hope is that it will give other women with AA inspiration that their hair loss can go into remission too.
For other women that are using Rogaine and may not be using it consistently, you can definitely be an inspiration. One of the ladies that has AA was using Rogaine on her large bald area on her head...she had it measured and showed the progress of hair growth till the bald spot was gone. I cried when I saw that. It was so beautiful to see.
Please post pictures so we can celebrate with you. I celebrate with you. :>

[esmerelda]

Thanks Angela; I will post some pictures in a while when it gets long enough to see in pictures. My camera does not show close-ups so well, but the regrowth is only about half an inch long in the front and while it is darkening, it doesn't show up so well on pictures. I can see it very well under the bathroom lights but the camera does not illustrate it very well. I think it needs to get darker and longer to show up... its a long process, but I will post some pics maybe in a few more weeks.

[Angela]

When you're ready my dear. I can't wait! :D

[lorihutch13]

what have you done angela to have your hair growing back? what is the cause of you hair loss, do you know?

[Angela]

I moved to a drier climate that did not have a predominate issue with mold growth. Humid climates tend to keep mold activated and growing. Mold is public enemy #1 for me. I am hypersensitive and allergic to five of the most basic house hold molds. I have almost died a few times due to pneumonia brought on by mold.
I have been out here in NM for six months now, and in April I noticed that I had more hair coming in than I have had in years. A lot of body hair started coming in as well. It was a very difficult decision to let it grow, because I know that I could lose it all again or just not be able to handle the emotional aspects to hair loss.
I haven't used any types of treatments...understanding what triggers my hair loss and avoiding those triggers has helped the most.

[lorihutch13]

Holy Moly!! This is really mind blowing. I live in Indiana and had been getting allergy shots since 2002 for dust and mold. I am extremely allergic to mold. I kept getting sick recently with sinusitis and bronchitits , pneumonia like sx.'s and got re-tested.
Now I am allergic to even more mold than before. My allergist said..hmmm.." this is strange". So--the fact that you posted that makes me wonder about myself now. I am now on new allergy shots.

So you think it was the mold causing hair loss? any data to supprt this?

[Angela]

Holy Moly!! This is really mind blowing. I live in Indiana and had been getting allergy shots since 2002 for dust and mold. I am extremely allergic to mold. I kept getting sick recently with sinusitis and bronchitits , pneumonia like sx.'s and got re-tested.
Now I am allergic to even more mold than before. My allergist said..hmmm.." this is strange". So--the fact that you posted that makes me wonder about myself now. I am now on new allergy shots.

So you think it was the mold causing hair loss? any data to supprt this?

The only data I have is the years of suffering and finally moving to a dry climate with very little mold and making a complete recovery. Allergy shots made me worse and my very first dose sent me into anaphylaxis. They had to reformulate it to make it even weaker. I felt absolutely horrible on those shots. Avoiding moldy environments did the trick for me. Its better than any shot you could get.
I have had my hair grow back before, but a lot of it was still missing so it looked horrible every time I tried to grow it. I do have permanent loss due to my autoimmune disorder, but the other hair that was missing has grown in. I keep getting more and more hair now, not just on my head but everywhere. My hair hasn't been this thick since before the first time I lost it.
Definitely have your home tested for mold. It could be the problem with your hair loss.

[divinem]

RU kidding? You're too cool to be unhappy for! :D I think you look great either way, but obviously we prefer to have our hair. You're right. It is coming in nicely. And I have had periods of remission followed by relapse, too. So I know that dubious sense of hopefulness you speak of as well.

Praying it's for real and for good this time!
:> ~M

[Angela]

Thank you hon, you are so sweet.