Dealing with the unpredictability - Alopecia World2024-03-28T14:52:51Zhttps://alopeciaworld.com/forum/topics/dealing-with-the-unpredictability?x=1&id=2022678%3ATopic%3A1060586&feed=yes&xn_auth=noI think you put into words wh…tag:alopeciaworld.com,2013-07-02:2022678:Comment:10645132013-07-02T01:04:03.400Zchristy murphyhttps://alopeciaworld.com/profile/christymurphy
<p>I think you put into words what many of us feel. I have had AT for 9 yrs. I just recently lost my eyebrows and eyelashes. I am devastated. I am currently in therapy because I just can't come to terms with the loss. <br/> I wish you all the best. Just know you are not alone :-)</p>
<p>I think you put into words what many of us feel. I have had AT for 9 yrs. I just recently lost my eyebrows and eyelashes. I am devastated. I am currently in therapy because I just can't come to terms with the loss. <br/> I wish you all the best. Just know you are not alone :-)</p> I Just want to say thank you…tag:alopeciaworld.com,2013-07-01:2022678:Comment:10644072013-07-01T17:51:32.350ZKatelynhttps://alopeciaworld.com/profile/Katelyn447
<p>I Just want to say thank you to all of those who replied. I was actually very touched by how many of you took the time to respond. I'd love to write you all individually but I'd be here all day if I did that, also I do not want to tear up here at my desk. :) It's nice to know that so many can relate. At this time my hair loss is still very steady and every day my hair is getting thinner and thinner. Right now I have more bad days than good but I'm not going to give up and I have faith that I…</p>
<p>I Just want to say thank you to all of those who replied. I was actually very touched by how many of you took the time to respond. I'd love to write you all individually but I'd be here all day if I did that, also I do not want to tear up here at my desk. :) It's nice to know that so many can relate. At this time my hair loss is still very steady and every day my hair is getting thinner and thinner. Right now I have more bad days than good but I'm not going to give up and I have faith that I will feel better, no matter what happens. Thanks again from the bottom of my heart for all your attention and caring words :)</p> Katelyn, everything you said…tag:alopeciaworld.com,2013-06-25:2022678:Comment:10633202013-06-25T20:42:39.035ZNicolle joi housemanhttps://alopeciaworld.com/profile/Nicollejoihouseman
<p>Katelyn, everything you said is exactly how i am feeling. I have been dealing with AA since 2007, i have currently lost at least half of my hair,it does not stop falling out, everyday it sheds. I wish i could say it gets easier, but for me its not the case.I try to function normally, as i have a full time job i must go to. I certainly feel like hiding out the rest of my life. My hair was everything to me,i think about it continually. I just cant afford to get all these treatments people talk…</p>
<p>Katelyn, everything you said is exactly how i am feeling. I have been dealing with AA since 2007, i have currently lost at least half of my hair,it does not stop falling out, everyday it sheds. I wish i could say it gets easier, but for me its not the case.I try to function normally, as i have a full time job i must go to. I certainly feel like hiding out the rest of my life. My hair was everything to me,i think about it continually. I just cant afford to get all these treatments people talk about, so everyday i watch more and more hair go away. I spend quite a bit of money on products to make what little hair i have left seem like more and i cover the spots with joan rivers great hair day. I find myself staring at people with thick, pretty hair and i feel jealous, wondering why that cant be me!! :(</p> I thought I was the only worr…tag:alopeciaworld.com,2013-06-23:2022678:Comment:10624812013-06-23T06:18:18.642Zfarrahhttps://alopeciaworld.com/profile/farrah
I thought I was the only worried about changing wig styles. I have a coupla of very natural looking human hair wigs in a lovely mix of dark brown, auburn and yellow gold. Beautiful! Company has discontinued this wig. I have bought similar color, but have not been able to get human hair OR the exact mix. I keep wondering what I am gonna do when these two wear out or just look too ratty to wear any longer.
I thought I was the only worried about changing wig styles. I have a coupla of very natural looking human hair wigs in a lovely mix of dark brown, auburn and yellow gold. Beautiful! Company has discontinued this wig. I have bought similar color, but have not been able to get human hair OR the exact mix. I keep wondering what I am gonna do when these two wear out or just look too ratty to wear any longer. Katelyn, my heart goes out to…tag:alopeciaworld.com,2013-06-23:2022678:Comment:10625592013-06-23T05:22:28.267ZDenisehttps://alopeciaworld.com/profile/DeniseLethbridge
Katelyn, my heart goes out to you. I have not been on here in a while. I have been an alopecian since April 2009, I was working nights which I still work shift work. am and my hair burned and started falling out. I will never forget stuffing hair in my pocket and going to the washroom to realize omg my hair which was longer than my shoulders was falling out. I said not a word, went back in and finished my shift without barely moving at all.... fast forward a wk it was falling out in…
Katelyn, my heart goes out to you. I have not been on here in a while. I have been an alopecian since April 2009, I was working nights which I still work shift work. am and my hair burned and started falling out. I will never forget stuffing hair in my pocket and going to the washroom to realize omg my hair which was longer than my shoulders was falling out. I said not a word, went back in and finished my shift without barely moving at all.... fast forward a wk it was falling out in droves.....cortizone injections which made me so sick, a yucky nauseated feeling all day and they flipping hurt.....needles in head just not right, my hair was pretty well all out within 3 wks , so had to shave it , comb over was not working, hats to hide it, ya like that worked. I remember sobbing on way home after she shaved it off. I had bare spots I never realized I had, all over, today I have bare spots that have ever grown back at all , except white odd hairs with a few small areas of black fuzz that never grow long, they fall out when stress is in my life. WHich in my job is pretty much all the time.<br />
it is bald for the most part I have no eyebrows ( I wear eye brow wigs I love them ) no one can tell....... and barely any lashes. My hair grows in spots in shadows and falls out.....<br />
<br />
If I was to be as honest as you were when you wrote this , I would have to say I am angry still. I do not understand, a tiny part of me waits in case, but then even if i gently touch my hand over my head the shadows fall out. So I wear wigs, my dilemma now is , I have some almost all the same, as I try to hide I have ALopecia in public. I wish I could just dig deep enough to find the courage to wear what ever wig I chose to and not feel uneasy, insecure, always wondering can they tell, what if it rains, what if the wind is strong, what if someone hugs me before I can hug my arms above theirs they might move my hair OMG the fear of that one......... I act like I am so ok with it, when in reality there are days it is like it is the first day all over again.<br />
<br />
I never had the patches grow over like you did. I would be too afraid to be in the bank in line and then all of a sudden whoooopp the swoosh of falling hair......ya , no........<br />
<br />
My fear now is can they tell it is a wig? am I pretty still , am I still likeable looks wise. I know BEauty is inner but , it is a struggle...<br />
<br />
SO if I can say anything it would be that , each day, be thankful for all the good in your life and I agree with all the other posts , their words were all what I feel inside. Yet told in diff ways.<br />
<br />
ALopecia is a hard journey, some good days , some really bad inside battle days.......<br />
I am still figuring this all out. But your right where you need to be.<br />
<br />
:) there is no magic wand , but there is alopecians who understand....<br />
Denise :) Katelyn, Losing hair is horr…tag:alopeciaworld.com,2013-06-22:2022678:Comment:10623862013-06-22T20:59:05.935ZEmilyhttps://alopeciaworld.com/profile/EmilyYoungMother
<p>Katelyn, <br></br> Losing hair is horrible. It just sucks. And I am sorry. It is so frustrating. Your journey sounds a lot like mine. My alopecia areata started when I was about twenty-two. Just like you, the patches were relatively small, but they got bigger. I could always conceal them, but I WILL NEVER FORGET HOW I FELT WHEN I FIRST VISITED <a href="http://WWW.NAAF.ORG" target="_blank">WWW.NAAF.ORG</a>. I was in total shock. The condition was new to me, and the lump that formed in my throat…</p>
<p>Katelyn, <br/> Losing hair is horrible. It just sucks. And I am sorry. It is so frustrating. Your journey sounds a lot like mine. My alopecia areata started when I was about twenty-two. Just like you, the patches were relatively small, but they got bigger. I could always conceal them, but I WILL NEVER FORGET HOW I FELT WHEN I FIRST VISITED <a href="http://WWW.NAAF.ORG" target="_blank">WWW.NAAF.ORG</a>. I was in total shock. The condition was new to me, and the lump that formed in my throat pretty much hasn't left; today I am 34. The patches have come and gone, and I have never had to wear a wig. Instead, I dutifully put my hair back in a low bun pony tail and always check the mirror to make sure that the "ugly" spots aren't showing. It SUCKS. I realize now though that I have had it pretty good. All of a sudden, the hair is coming out aggressively. More than it ever has in the past. I can still hide it, but those days look like they might be numbered. I don't want to wear a wig. I want someone to make it stop falling out. Being without hair and wearing a wig doesn't sound like fun. Hair is not only pretty but it feels wonderful.</p>
<p>I wish your hair would stop falling out. I think it will.</p>
<p>Going to treatments and seeking help from a variety of medical professionals is draining. I know. I used to spend a lot of time doing it. I don't anymore. For what it's worth, once I stop nursing my four month old, I am going to begin using topical anthralin cream. Have you tried it? I prefer it because I can do it at home rather getting steroid shots from my dermatologist where I always wait at least 45 minutes beyond my appointment time....with two kids under two, this is really not an option for me. If you haven't tried the anthralin, you might give it a go. It is a tar like substance that essentially makes the skin react as if you have gotten poison oak or something. Uncomfortable? Yes! Effective....maybe?! Hard to say.</p>
<p>Just curious: did you ever eat restrictively? I did for years. I know that I went in and out of anorexic periods. That adds a whole additional layer to this condition. Most people with this confusing condition can't help but wonder if they are doing something to cause it. Well, in my effort to maintain control and to reach some conventional ideal left me with a kind of misery I wouldn't wish on anyone, ever. I hate that my patches today could be a result of my obsessive eating years ago. Not fair.</p>
<p>With all of this said, I am now happily married with two of the most beautiful kids on the planet. My husband is amazing. It's not every day that I suffer. Like you, some days are great and some days are really hard.</p>
<p>I wish you strength and peace. You are not alone. Cry when you need to. Don't let anyone tell you it's not a big deal. It is. What you are going through is not fun. Hang in there. I hope your hair stops falling out.</p> It is devastating to lose one…tag:alopeciaworld.com,2013-06-22:2022678:Comment:10623232013-06-22T19:36:21.018ZTeresa Coxhttps://alopeciaworld.com/profile/TeresaCox
<p>It is devastating to lose one's hair..I know mine is gone. Over the years I have learned that it is not our hair that defines us but the life we live and how we treat one another; which is the basis of humanity. When I first found Alopecia World and saw the many pictures of all of the bald beautiful people here; I felt pretty good and I hope this will happen to you. You are beautiful with or without hair.</p>
<p>Have you considered wigs? There are many out there that are so beautiful and…</p>
<p>It is devastating to lose one's hair..I know mine is gone. Over the years I have learned that it is not our hair that defines us but the life we live and how we treat one another; which is the basis of humanity. When I first found Alopecia World and saw the many pictures of all of the bald beautiful people here; I felt pretty good and I hope this will happen to you. You are beautiful with or without hair.</p>
<p>Have you considered wigs? There are many out there that are so beautiful and none will be able to tell you have one on. there is a site called Wigs by Patti's Pearls and she is wonderful and will customize your wig(send her your head measurements); she has training videos on how to measure your head, how to take care of your wig, etc. It's worth checking out this site!</p>
<p>I f people stare at you, well you can always yank ( not too hard) off your wig and say "Make a wish" and either they will laugh, pee on themselves and faint or just run... A little wig humour for you! IU found a sense of humor helps the mind and spirit!!</p>
<p>But there is a grieving process that you do go through when you lose your hair and never feel guilty or that what you are feeling is wrong, because it isn't. Give yourself a chance and remember you are not alone! there are as I think you have found out; are many folks on this site are wonderful and can help you. Take care of yourself and do check out Patti's Pearls.. ithink youw ill be pleasantly surprised!</p> Dear Katelyn,
Wow, I feel you…tag:alopeciaworld.com,2013-06-22:2022678:Comment:10621232013-06-22T15:58:36.174ZCinder B. Randhttps://alopeciaworld.com/profile/CinderBRand
<p>Dear Katelyn,</p>
<p>Wow, I feel your frustration. I think what you are feeling is so right-on for what we all go through. I agree with you not to do the treatments. Some of them are painful, cause other damage to our bodies, most of the time do not work and oh yes…expensive. It is ok for you to rant and have all of the feeling you are feeling. You need to go through this at your pace. You have an amazing support system here with this site and you will be surprised how many people you will…</p>
<p>Dear Katelyn,</p>
<p>Wow, I feel your frustration. I think what you are feeling is so right-on for what we all go through. I agree with you not to do the treatments. Some of them are painful, cause other damage to our bodies, most of the time do not work and oh yes…expensive. It is ok for you to rant and have all of the feeling you are feeling. You need to go through this at your pace. You have an amazing support system here with this site and you will be surprised how many people you will meet that have this. I am always amazed. I live in Chicago and I must tell you I meet people all of the time. I still wear pieces but I am very open about telling anyone that I have this. In the beginning not so much (now for myself a little over 6 years). I have Alopecia universalis and although it was a very hard adjustment we as human beings are amazing and we do adjust to what we must adjust to (wow that was a mouth full). I will tell you I never have a bad hair day anymore. For myself and around my very close friends I have become comfortable about not wearing my hair all of the time. I do hope for you that your spots all come back full and beautiful and you never have to deal with this. But if you do have to deal with spots and more just know you have a wonderful support system with so many wonderful people that will understand (us). None of us want this but I will tell you for myself I do not want my hair back if it was to come back and then fall out again. I have seen this happen to a number of people and that this seemed worse to have to experience the loss again. But it is something we really do not have any control over. I can only talk from my own experiences but it has brought to me a lot depth that I did not realize that I had within side of me. I am not going to say that I am happy that I have this but…I sure am not going to say that I am unhappy. I know that there is a lot more to us then our hair. I had great hair and people use to stop me on the street to tell me so. Well now every day I just wear different pieces and like I said I look different every day (if I want to). So go crazy, write a story, go to groups, don’t go to groups, rant, rave, cry laugh…it’s all good. I am not sure if I answered anything for you but I hope that maybe it helped just a little bit. You look lovely in your picture, with or without hair. Hugs and Peace, Cinder</p> I agree about the medication.…tag:alopeciaworld.com,2013-06-22:2022678:Comment:10623122013-06-22T15:43:02.390ZMichjo57https://alopeciaworld.com/profile/Michele386
<p>I agree about the medication. I was on Griseofulvin, the side effects on the liver were too much to think about. What, I get my hair loss stopped but I need a liver transplant down the road? No way. It's a crazy disease or whatever it is. I know it is autoimmune related.</p>
<p>I am also doing some essential oils for the emotional aspect of all this. It certainly helped calm me down. I was so emotional when this all started. By the Grace of God though, I have learned to accept it. Going…</p>
<p>I agree about the medication. I was on Griseofulvin, the side effects on the liver were too much to think about. What, I get my hair loss stopped but I need a liver transplant down the road? No way. It's a crazy disease or whatever it is. I know it is autoimmune related.</p>
<p>I am also doing some essential oils for the emotional aspect of all this. It certainly helped calm me down. I was so emotional when this all started. By the Grace of God though, I have learned to accept it. Going camping today with my scarf on. Wear a wig to work everyday. We only have one life on this earth and we can't let hair stop us from living. There are beautiful wigs out there now. I worked in Oncology for 10 years and never thought twice about the women having to wear wigs. It was just part of my work life. I think we are harder on ourselves about having to wear hair, than we need to be. Nobody notices. We are just more aware of hair now. Just take time and keep the faith! You can overcome this! God Bless!</p> I feel the same way so you're…tag:alopeciaworld.com,2013-06-22:2022678:Comment:10621182013-06-22T14:34:04.221ZSharihttps://alopeciaworld.com/profile/Shari
I feel the same way so you're not alone! You didnt say how old you are, I'm 43, and my story is so parallel with yours. My AA Started 18 months ago with a spot in the back, did the shots, had regrowth and thought it was over. Exactly a year later new spot in the back, got shots, figured it woukd grow back and id moce on like last time....but then each week I would find new spots. It was nothing like my last experience and I'm up to 10 spots of various sizes now. Shots seem to help but growth is…
I feel the same way so you're not alone! You didnt say how old you are, I'm 43, and my story is so parallel with yours. My AA Started 18 months ago with a spot in the back, did the shots, had regrowth and thought it was over. Exactly a year later new spot in the back, got shots, figured it woukd grow back and id moce on like last time....but then each week I would find new spots. It was nothing like my last experience and I'm up to 10 spots of various sizes now. Shots seem to help but growth is much slower than the last time. Like you I have my moments of hair envy, I hate spending money on shots and taking time off work every few weeks for dr appts. I spend time wondering if it will ever end! If my AA will go away or if I will forever keep finding spots until my head is a patchy mess of different length hair. I'm a busy full time working mom of two daughters and don't have time to spend on this. Most days I force myself not to focus on something so superficial as hair but as you said, I see women everyday with beautiful hair and think about how scared I am that the wind will blow and my secret will be revealed. It's a hard disease and this site has me helped a lot! Thank you for sharing your story because it helps knowing we are not alone!