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Comment by Jude on July 22, 2021 at 10:45am

I meant to say Hi Tundra Woman and sorry for any mistakes.

Comment by Jude on July 22, 2021 at 10:39am

Hi,

I am sorry I didn’t get back to you sooner.  I had a couple of very busy weeks.  My daughter and family came to visit from Germany.  I usually cook the week before and freeze everything so I can spend every minute with them.  They have only been home twice in eight years. We visit them every year wherever they are. We have not been able to visit because of Covid. Before  Germany they lived in Japan for three years. It is so hard just seeing my four grandchildren and daughter only once a year. Now they are going to live in Bahrain.  We had a wonderful time.  It was so good to spend time with them.  My son-in-law is in the Navy.  That is why they have lived in so many places.  Two doctors said I have autoimmune disease and one says it is just Androgenic Alopecia.  The one doctor says I inherited Androgenic Alopecia.  Both my mother and father never lost any hair and they lived into their eighties.  The doctor said someone way back in my family had it and I inherited that gene.  I can’t believe what happened to you!!  That must have been a nightmare!!  I am so glad that the nurse practitioner ordered those tests.  I can’t believe that gastroenterologist would not listen to you.  He caused you a lot of suffering.  That is awful.  The goiter sounded horrible.I am so sorry that you had to have a complete thyroidectomy.  You must be on a lot of medicine.  That is such a shame.  I had nothing like that.  You went through a lot of sickness.  I am so sorry you had to

• go through all that.  (Sorry I don’t know what this print is doing and don’t know how to fix it). I will go on the Wrapunzel site.  Sounds great.  I did go to a person that specializes in wigs and toppers but she said to wait until I really need one because if I got one now the topper might be wrong or I will need a full wig.  She did show me some, although she didn’t have a big selection. I tried on a topper and it is not that bad wearing one.  I liked her a lot.  I felt a little better after trying the topper on. I will try some more people.   I want to thank you for everything and taking the time to help me.  I have been on another site and nobody even answered me.  You are an amazing person to have gone through all that you did and  still have such a wonderful attitude.  I only hope I can someday have your attitude about hair loss.  You have been so kind and helpful!!  I really appreciate all your suggestions. I feel you have helped me so much with my hair loss.  Thank you so much!!!

Comment by Tundra Woman on July 17, 2021 at 8:47am

Better late than never! Wrapunzel is the site I used, the head wrap is called a tichel and there’s plenty of sites selling them accompanied by Blogs and lots of ideas including Wrapunzel. Best wishes and I hope this helps you, Jade.

Comment by Tundra Woman on July 7, 2021 at 9:57pm

Aww, Thank you, Jade! How kind: I am so pleased you’ve found any of my comments helpful in any way.

What I’m thinking is because of the kind of alopecia you are dealing with, perhaps a topper may work the best for you to fill in the thinner spots while you’re waiting to see what your hair does next. You absolutely can bend over with any kind of hair you wear and it won’t be noticeable nor will it fall off-promise-and that’s why I think you’re so lucky to have bricks and mortar stores in your area! They can help you find a hair color that blends with your own and maybe give you some nice highlights or lowlights without the expense and the time it takes to maintain highlights etc. regularly by a professional hair salon  Do you wear your hair up for exercise class? Since you have thick hair, I assume you get pretty warm as we all tend to sweat quite a bit through our scalps Anyway, they can help you blend your natural color with some options for your particular situation.

Also, there are very fashionable head wraps-I not thinking of the ones you wear for chemo but for example, the ones conservative Jewish women wear called titchels-I’m sure I’ve spelled that incorrectly but I’ll send you some examples in my next note, OK? You wrap them yourself and there are many color combinations and accessories you can incorporate with them.  You may feel more comfortable wearing one of them especially if it’s pretty warm. Anyway, please have a bit of patience and I will get back to you in a few days, promise!

You also shook loose some hair memories from decades ago-Mon Dieu, how could I forget this hair event! You mentioned your hair getting “soft.” My late husband was like your’s even when I had him feel how incredibly soft, like the finest textured baby hair mine had become and he responded just word for word as your’s did! (They must have read the same script!)Thank heavens I wore my hair up but it was becoming increasing difficult to braid my very soft, slick, baby fine hair.

Here’s where the plot thickens ;-) Your diagnosis is considered an autoimmune illness, right? Well, for *years* I had allllll The symptoms of hyperthyroidism and struggled to get up to and stay at 100lbs. on my 5’6” height. I was working with a gastroenterologist who kept repeating blood work for my thyroid-for 6 yrs. and every. single. my bloodwork came back “perfect.” *He was not at all interested in what I was telling him* and instead was much more interested in my lab reports. Sometimes as wanted to grab my file away from him and scream, LOOK AT ME...I Have  EVERY SINGLE INDICATION OF HYPERTHYROIDISM, YA FOOL! My sense was he was blaming ME for his failure to correctly diagnose what ailed-not an uncommon response among certain segments of the medical community. Sometimes they are NOT the smartest person in the room.

Further, the social implications were appalling: People speculated constantly on my alleged “eating disorder” especially when they watched me eat everything in sight and then, when I went to the bathroom shortly thereafter because my body was on overdrive, well, for sure I had an eating disorder of some kind....Uh,  NO. Then there was the speculation I “must be” using cocaine-HA! Not a chance and there was also speculation I was HIV+. It was truly embarrassing as I was a professional and meeting with new people every day. I need to add the most offensive rumors originated and were perpetrated by women. Anyway, decades later I am still suffering medical implications from his failure to LISTEN TO ME.

Just as I was about to give up I met a nurse practitioner whose office was not far from my home. I told her about all my symptoms and she actually LISTENED to my symptoms including my hair etc. She ordered a series of tests starting with blood work which big surprise, came back “perfect.” But we had to follow a certain protocol for my insurance to cover the cost. The next two lab tests she ordered were a thyroid ultrasound (which visualizes the form of the thyroid) followed by a thyroid uptake exam (which demonstrates how the thyroid is  actually functioning .) The results of both were just off the charts crazy. Shortly thereafter when she referred me to a great Endocrinologist, I precipitously grew a goiter which was choking me within weeks. Of course my bloodwork was STILL perfect. The result of years of unrecognized hyperthyroidism resulted in a *complete thyroidectomy.*

I’ll finish this later-my cat has decided she’s gonna plop down between me and my IPad and no amount of persuasion will extricate her from her position! To be continued along with the headwraps I mentioned.

Sorry for the typos etc. as she doesn’t believe proofreading is anything but another attempt to dislodge her from her “rightful place” on top of me!

 

Comment by Karen on July 6, 2021 at 1:29pm

First and foremost I AM NOT SELLING ANYTHING, my son lost a spot of his hair that was about the size of the palm of my hand.  He has many health challenges so we were at his neurologist, she told us to get him on a good mineral after trying a few and going to a natural health food store we found one. We started him on the mineral in September and by Christmas his hair was all back.  We have kept him on it so no more bald spots.  I know it may not work for everyone but it sure is worth a try

Comment by Jude on July 6, 2021 at 9:52am

Tundra women

I believe you are the nicest person on the planet.  I appreciate your help so much. You are the only one that truly understands. You are such a life savior!  I will try to find someone I feel comfortable with and can help me. I still can’t picture going to exercise with a wig. When I bend over my hair goes upside down.  Won’t everyone see the wig.  I would also be afraid  it  would fall off.  I thought that would be the end of my exercise class if I have to wear a wig.  In my exercise class everyone always because commented on the thickness of my hair. I had unusually thick hair. Of course exercise was cancelled because of covid and I have not seen them in a long time.  If it starts up again I know they will notice that my hair is thinner than it was.  I am so embarrassed by it.  I wish I can get rid of this dark cloud.  I have tried but it is on my mind constantly.  My husband tells me that it still looks good and nobody is going to notice.  I notice, I can’t wear the same style hair, it won’t curl under the anymore and it is getting stringy. My hair was corse and now it is soft.  It feels like nothing on my head,  I feel I am about to lose my identity.  My biggest fear is looking in the mirror some day and I won’t be looking at me anymore.  How did you get rid of the gloom and doom feeling.  I have tried being happy but I cannot get rid of this awful feeling of losing my hair.  Thanks again for all your help.  I keep telling myself if you got through it maybe in time I can, too.  I want to believe I am in charge of my own destiny but that doesn’t seem to work yet.

Comment by Tundra Woman on July 3, 2021 at 2:53pm

Lucky you to have bricks and mortar shops available to you! Maybe just consider doing a Reconnaissance Mission to them and speak with the people who own/are employed by the various shops until you find someone who “gets” you, someone with whom you feel comfortable, OK? You don’t have to necessarily buy anything (although I would pick up something inexpensive, simply because I took up a lot of their time.) Also, it will help you become acquainted with some hair people in the event you do choose to avail yourself of their services sometime in the future.

Jade, what exactly are your fears/concerns regarding the possibility of wearing hair? Can you nail down your major ones aside from the obvious such as living with uncertainty right now? I’m asking because you mentioned you didn’t realize all the activities you can do with wigs, extensions, weaves, toppers etc. Your life does not have to be constricted in any way because of hair loss. There seems to be a lot of fear initially among those who are new to the alopecia community regarding other people’s responses to our appearance; is this one of your’s? 

In the event it is, remember, *you are in charge of how you respond to any challenge in your life:* ANY challenge, any arena. In fact, that’s all any of us have control over in this world.

I choose who I reveal my hair loss to while out in public. Obviously my close friends, family, colleagues etc. are aware of my Follicular Fiasco so no challenges there. If people are respectful when I’m out in public (this is a very conservative area, “my hair” style, color etc. is NOT) I’ll be happy to speak with them about my hair loss experience and more generally, medical conditions associated with alopecia. People are consistently surprised to learn this is not my natural hair. Just about every time I go out in public I get compliments on it which is the result of finding “my hair.” I’m originally from the NY metro area although I’ve been here for 40+ yrs. and continue to dress what the local’s call “city” so I’m already “branded” ;-)

Then there are the Idiots, aka those who are “Socially Challenged.” One that comes to mind was a Queen (certain segments of my gay friends prefer that designation) who screamed from waaayyy across the grocery store where I was minding my own business mauling the vegetables, “OH MY GAWD! I LOVE YOUR HAIR! IS IT YOUR’S?” while bearing down on me like a heat seeking missile. Time went into slo-mo as people turned to look at both of us. Of course it’s my hair: I bought and paid for it. He received a very chilly, Arctic response to his inappropriate “inquiry.” One would think as a hairstylist (as he informed me he was) he would have learned the necessity of discretion and manners.

Whether or not you have hair, there’s gonna be Idiots everywhere, Jade. Thoughts? Feelings? Experiences? 

Comment by Jude on July 1, 2021 at 11:00pm

Tundra Woman,

I am so glad I found this site.    I am too embarrassed to discuss  my hair loss with anybody. I do not feel so alone thanks to you and all the other people that responded to me.  I am so depressed not knowing when I will  lose most of my hair or all it.  It just continues to get thinner and thinner.  You can’t keep on losing that amount of hair and not go bald or lose most of it.    You are so brave.  That must have been devastating to lose 90 percent of your hair in three weeks!! Then to lose all your bodily hair, too.  I truly understand how you must have felt.  I am so encouraged by your story.  Maybe someday I will accept my hair loss like you.  Also, thanks for letting me know you wear a wig.  I did not know that you could do all those things while wearing a wig.  Maybe I can wear a wig someday.   I had thoughts that I would never wear a wig. Right  now I have much thinner hair and bald spots I can cover.  Let’s face it, I don’t know how long my hair will last losing 450 hairs or more a day.  You have helped me so much and gave me such encouragement. I really don’t want to hide away, but I thought about it.  I think there is a couple of wig salons I can start with.  Thanks so much for caring about me and helping me through this devastating journey.  Thanks again for sharing your story with me.

Jade

Comment by Tundra Woman on July 1, 2021 at 12:01pm

Hi Jude,

I had a hairpocalypse of three weeks most unexpectedly during which I lost about 90% of my (hip length) hair. To say hair “falls, out” initially is an accurate description as it spreads the Crime Scene far and wide. But then (cue creepy Muzak) it mats. It mats like a Persian cat dipped in a vat of melted Italian Ice and it hurts! While this was going on I was getting weaker and weaker and one night I looked in the bathroom mirror and looking back at me was a woman who looked like they had mange. I found a dull scissors and started chopping as I was afraid I’d be too weak to stand in front of the mirror if I waited any longer. This should have demonstrated how foggy my brain was because what resulted could NOT be called a “hairstyle” by any definition and I sure didn’t need a mirror to bend over the sink and chop away. Then I lost all my hair; my bodily hair to include eyebrows to eyelashes (oh my poor eyeballs!) and ah....I was seeing things I hadn’t seen since I was about 11 yrs. old. Also, it was winter and I did not wear hats so I had none. When I started feeling a bit better I made an appointment to see my Primary and one of my neighbors was kind enough to lend me a tooke. When my appointment was scheduled, I kept my head down and found a seat in the back of the waiting room.

I live in the boonies and many people know me personally and professionally. There are no bricks and mortar hair stores so the learning curve on line for Hair You Wear was really steep. I found one company online that offered a lot of education and more stylish wigs so I worked with them. Nonetheless, I made every blunder in the world-and probably invented a few! (Some were hilarious, TBH!)

Jude, so many of the people you see in the media are wearing hair: From toppers and weaves to extensions and full wigs. People who wear hair recognize NO ONE’S hair looks that perfect every day, so we the “Folicularly Challenged” notice. A lot. Since I felt like a freak there was some consolation in acknowledging that reality. Nonetheless, we are not celebrities etc. so hair loss and it’s sequelae are *as unique as each one of us* regardless of whether we are men, women or identify in some other way. In my experience hair loss *is* traumatic for everyone. It’s truly a grief issue, so please  don’t under estimate how much of our Identity is tied up in our hair and appearance. Additionally  living with uncertainty is one of the most epically demanding mental states in which one can reside: If we *know* the outcome, we can start the process of accepting that reality no matter how bleak it may be *at the time.* Your response to your hair loss is normal IMO, Jude.

Clearly you are working with a physician-which is good. However, in my experience they can’t predict the course of anyone’s alopecia for sure: We live in a world of uncertainty, my friend. Further, hair loss can be a part of an illness that effects the whole body-but often that reality is not recognized as we are referred to a variety of specialists who may be experts in their field BUT not in certain kinds of illness that have multiple discrete manifestations over time throughout the entire body forming a medically recognizable clinical picture. As a result initially that presentation may not be  treated accordingly. To further muddy the waters, alopecia may be a part of the clinical picture of *multiple illnesses.* (Yeesh, hair: Thanks for the specificity!) That’s why I work with my Primary: They see the “whole picture” and we have a reciprocally respectful relationship-because I refuse  to tolerate anything less, frankly.

I don’t know where you are in your hair journey, Jude. Are you open to trying some toppers? If so, do you have a bricks and mortar store in your area? Do you realize you can do everything you’ve always done with Hair You Wear? Swim, ski, go hiking, camping etc. What ever activities you enjoy, there’s at least one solution/hack (usually multiple) to get you there. My concern is you’re going to hide inside because of your hair loss. People can become clinically depressed over their alopecia and it’s important to recognize this potential situational outcome, OK? 

Finally, we are not what’s ON our heads: We are what’s IN it. That’s a reality that comes from our intellect, not from our emotions. It takes awhile to work through the psychological issues associated with alopecia. Please hang around, Jude and remember, *YOU MATTER.* 

Best wishes :-) 

And any and all typos, omission, commissions, impressions, opinions etc. are on me: Objects are closer than they appear in the mirror. Use caution when operating. Keep away from children. Dispose of properly etc. etc.!

 

Comment by Jude on June 30, 2021 at 8:04pm

Anyanwu,

Thank you so much for your kind words.  I wish I could be like you.  I am a mess because of my hair loss.  Maybe with time and a caring community I will be better.  Just knowing there are people like you makes me feel a lot better.  Thank you so much for your encouragement and taking the time to show that you care.

jude

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