Women’s Hair Loss Project

Most of you know me as “KatKat” or even the “resident topper expert” as I frequently give advice on toppers and how to wear them. I developed diffuse alopecia and chronic telogen effluvim four years ago and started wearing hair in my previous career as a pharmaceutical representative where I was judged by my appearance on a regular basis. I have worn hair through dating adventures and then under a veil on my wedding day. My topper and I have been through airports and dental surgeries, in wind storms and downpours, and on a cruise. But of all of the adventures I have ever had in my “hair,” none could prepare me for the events of my life this year.

On March 7, 2011, I gave birth to my wonderful son. After nine long months, I was so excited to meet my baby! Yes, my hair grew fuller while I was pregnant. However, what grew was just more bad, miniaturized hair — not “usable” hair. I discovered that I was so comfortable in supplemental hair that I would rather continue to wear it than resort to trying to fix my old, flyaway hair. I won’t lie, it was nice to see more hair when I took my topper off each night but that was the extent of celebrating seeing my hair come back.

Throughout my pregnancy I wondered about the day my son would be born. Would I have my topper secure enough? Should I just tell my nurses about my hair since we would be up close and personal? Would I have time to wash it when I went into labor? Should I wear a headband or a ponytail? So many scenarios played through my head. Deep down I longed not to care about any of it; but I did. [click to continue...]

In communicating with a fellow network member today I was reminded of some thoughts which I wanted to share with all of you.

Dealing with hair loss has been hard, very hard. I’ve felt it has robbed me of many years of my life because I spent so much of my 20’s hiding, making excuses, avoiding social situations and really feeling completely uncomfortable in my own skin. I placed walls around me and rarely would let anyone in. I was a stranger to myself.

With time… a lot of time, I became more accepting of my current hair loss situation. I no longer prayed for all my hair to come back, I really prayed for strength to deal with this hand I’ve been dealt and I prayed for the courage to take the next step towards moving on. With the passing days/months it did get easier to deal with my hair loss and as the years progressed, while I’d still slip back into my own self loathing and depression, my “down times” became shorter and my recovery times much faster. Most days I can stare at a pile of hair in the sink that used to render me a sobbing mess, and just say a few curse words and send the mess down the toilet. Au Revoir. Other days, it takes the wind out of my sail, but never to the extent that it used to.

Most of the time we speak of what “such and such as done to us,” but not nearly as often do we sit and ponder what “such and such” as given us. There is no question that hair loss took a lot from me (because I allowed it to), but it also gave me things… it gave me a deeper understanding of human emotion, it afforded me a whole new perspective on things and life, it handed me appreciation for many things I previously took for granted and it taught me to be more patient - albeit not nearly as patient has I’d like to be It also showed me that I was stronger than I had previously given myself credit for. [click to continue...]

As women dealing with hair loss we often want to conceal the fact that we are enduring a struggle that we feel no woman should have to be faced with. It’s a secret, and for many of us, it’s a very dark one. It’s not easy to come out to friends or family, for fear of not being understood or sheer embarrassment. Which is why I was so proud to hear that Lisa, a longtime member of the Women’s Hair Loss Project, was coming out of the shadows and sharing her story in a big way - front page of the CNN Health section. How’s that for an audience?

The story is titled, “An agonizing secret: One woman’s story of loss.” It is an honest, and heartfelt inside look into the struggles of being a woman with this condition. Knowing Lisa, makes this story and reveal all the more emotional and amazing. Despite having understandable hesitation and reservations about “coming out,” she persevered. Being a woman who has essentially lived in hiding with this condition, only using an initial as my identity on this site , I’m in awe of what Lisa has done. Sharing her story brings awareness to women’s hair loss, and it lets other women know that they aren’t alone in this. We don’t have to be silent, we don’t have to keep it to ourselves. Sharing is healing – I believe that.

Lisa joined the WHLP in June 2008, and quickly became a beloved member of the community and a close confidant of mine. While struggling through the sadness, we often found laughter in making light of some of the idiosyncrasies of dealing hair loss, we shared more than our hair loss, we shared our lives – as many women do in the network.

I encourage everyone to visit CNN Health and read Lisa’s story. We often live in the shadows with hair loss, and it is a proud moment for us all when a woman steps forward and represents us all – our feelings and our struggles.

To Lisa: Celebrate today, and never second guess the amazing thing you have done. Be proud and feel strong. If you cry, make them happy tears! I’m crying happy tears for you. Your path is one I hope to take one day – accepting myself entirely as being a woman with hair loss and willing to stand tall and share that with the world. For now, I’m still that lonely initial, “Y.”  Much love to you girl!

I’ll be interviewing Lisa later this week about her decision to come forward with her hair loss story.

So I’m sure many ladies have already run up against the issue of having difficulty in getting Aldactone (brand name for Spironolactone) prescribed to them. Not all doctors are aware that this drug is used to treat androgenetic alopecia, and most of the ones I have met refuse to prescribe it at all, or in a dosage sufficient to actually potentially be of any help.

After a recent visit to a local dermatologist I left feeling smaller than slug, completely deflated, misunderstood and humiliated. My current prescribing physician is not local, and I was hoping to find someone close to home that would provide me with the prescription I need to help keep my hair from falling out of my head.

A few months ago my fiance went to a local dermatologist, and while there he thought to ask if he prescribes Aldactone to female patients with hair loss.  The doctor stated a resounding “Yes,” and seemed to be fully aware of the potential benefits of it for hair loss and for hirsutism. So knowing this, I make a visit there in the hopes of leaving with a prescription for 200mg (100mg/ 2x day) of Aldactone, that is after all what I currently take. I even went to the appointment armed with my existing prescription bottle to prove that I am in fact currently taking this.

To make a long story short, the nurse and the doctor were completely shocked at the dosage, telling me “That is way too much!” and that they only prescribe 25mg, or tops 50mg. What? They then proceeded to ask me if I’ve ever had any blood work to determine what is causing my hair loss. Well gosh darn, why didn’t I ever think of that? I’ve only had every blood test known to man done a 100 times over. The doctor then continues to tell me that this is the culprit of my dry skin, when in reality I’ve had eczema and dry skin my entire life. I try and explain my situation, my 11 years of hair loss and that for 10 of those I’ve been taking Aldactone and that ceasing to take it now would cause a tremendous hair shedding, and at the thinness where it is now, that would leave me with basically no hair. I’m the first to admit that I don’t like taking this drug, I hate it, in fact I’ve written on numerous occasions that I feel like a prisoner to it. My saving grace is knowing that once I make the choice to wear a bonded lace hair system that I’ll ditch the meds and be done with it, but that time isn’t now.

The doctor then suggested we try 100mg. 100mg? I let the doctor know at that dosage my hair will shed. How do I know this? Last year I tried to wean myself off the Aldactone and guess what? My hair shed.. a lot. I guess I probably looked super pathetic and desperate in that doctor’s room since he decided to go ahead and have the nurse write me a prescription for it. The doctor leaves and a short while later the nurse who is in the room with me still, says “I don’t care what you say, you have to get off that, it’s not good for you” and she didn’t say it in a caring way, it was a stern rude way. Of course this is coming from the woman who is probably in her 50’s and has never lost a hair in her life. How easy to judge when you sit there with a full head of perfectly coifed hair. And my favorite part of the whole conversation comes next, she then says to me, “Well, what do you think is causing your hair loss?” Yes you read that right, that is exactly what she asked me in her cold harsh way. Well lets see, hummmm bad genetics? the Loestrin FE pill? A curse? You take your pick. I just told her it’s genetic, that’s it, nothing more to it. I can treat it, glue it, or let it fall out. Those are my options.

I could feel my face getting red, and my eyes feeling like the ocean was about to pour out of them. I couldn’t get out of there fast enough, once I got to my car I burst out into hysterical tears.

That day was just another reminder of how much suffering hair loss has caused me, it’s not bad enough that this is happening, but I have constantly been confronted with doctors that have no compassion or understanding and who fail to do one simple thing… LISTEN. On multiple occassions I have asked the various doctors I have seen to prescribe me the Aldactone and they all look at me like I was asking them for crack. Actually it probably would have elicited less of a reaction if I’d asked for crack. The doctors are usually aghast that I would be taking such a dosage, their reactions make me feel like I am taking arsenic.

Anyways this rant is something I had to get off my chest. I would love to get a list of doctors together that do prescribe Aldactone at the higher dosage levels of 100mg - 200mg / day. Does your doctor prescribe it? If so, please share the name and location of your doctor because I know I am not alone in my struggles to find a doctor that can support my hair loss treatment decisions without making me feel like a piece of garbage in the process.

So I can across these amazing videos on YouTube made by MonroeZombieDoll, who is my new hero… she is absolutely amazing and I’m so thankful she made these videos of herself applying her lace front wig. I came across having a much better understanding of what goes into the process, it definitely helps to demystify things a bit.

How I Apply My Lace Front Wig

Reapplying Lace Front Wig

eHow.com has some articles on the lace front wig application process as well:

How To Apply a Lace Front Wig

One thing I had no clue about is what is written in the final step:

Once you have the wig on your head, it may be tempting to style and comb it. Don’t. Unless stated otherwise, both tape and glue adhesives have to cure for about 24 to 48 hours before any excessive pulling on the hair can occur.If you follow the rules, the bond should stay strong for a good while.

I’m sure once you are a pro at the lace wig application process you eventually develop your own technique and figure out what does and does not work for you.

How To Remove a Lace Front Wig

I’ve seen enough fabulous hair pieces and wigs to know that it remains a very realistic, viable option for women who deal with hair loss. But the question always remains, where do you go? I know I’d definitely want to go somewhere that was caring, compassionate, patient, and a place that wasn’t pushy and truly had my best interest at heart. After all we aren’t buying iphones, we are buying something so intimately personal, I think a little TLC and hand holding is in order.

There is no question in my mind that a lot of women close the door to wearing hair because their first attempt turned out to be an awful and traumatizing experience, or the product was subpar, and from that they probably figured there was no point in continuing to try. Unfortunately, wearing hair isn’t really SO common that you can just turn to your girlfriend and say, “Love your hair, where’d you get it?” It’s also a completely different experience when you are buying hair because you NEED it, as opposed to buying it because you just think it would look neat with an outfit. One situation has deep rooted emotions and the other is really more of an optional accessory. For that reason, it is crucial to find a place that actually deals with women losing their hair and understands the devastation and feelings that encompasses it.

I think finding a good hair replacement salon is probably tantamount to finding a needle in a haystack, so I wanted to share the names of two shops that seem to truly be helping women.

I have heard several positive stories about:

Lee Anthony
1001 W. 17th Street, Suite H
Costa Mesa, CA 92627
949-515-0631
leeanthony.com

One WHLP member stated that Lee actually told her that it was too soon for her to need to wear something, which I think definitely shows honesty and integrity.

The place I most recently heard about is:

Wigs Today
6338 W. 3rd St.
Los Angeles, CA 9006
323-954-8809

If you make a visit here, make sure it’s the address I listed above. I did find another place in Los Angeles by the same name, which had horrible reviews, but I’m pretty certain this isn’t the same place. According to the listing I found on Yahoo: http://local.yahoo.com/info-20415634-wigs-today-los-angeles#overview this place was only recently established in 2009.

I am super cautious about ever recommending a product or service provider, but I feel confident that the experiences I have heard about regarding these salons are from real women who have been a part of the site for quite sometime with no ulterior motives.

As a final note, I’d also run (not walk) from any place that asked you to sign a contract, gave you a hard sell or made you feel uncomfortable in any way whatsoever.

I’ve always been a private person, definitely more of an introverted personality. I find happiness and solace just being all by myself, never really feeling the need to have to be out and about and socializing. Well, hair loss added to that in a negative way. What once felt like a personal preference now seemed like a prerequisite to my life… solitude and isolation.

There were two monumental, emotionally catastrophic times caused by my hair loss. One was when this began in 1999, and the other crash came in 2007. I was losing my hair the whole time and having bouts of depression the whole way through, but those points mark times where I just sat constantly feeling helpless and completely without any motivation to live life. It’s definitely no coincidence that I created this site in 2007, it was an extremely sad time for me, and if you read my earlier posts you will likely feel the sadness and pain I was going through. I was withdrawn, I submerged myself into the comfort of my keyboard and I began to pour my heart out onto electronic paper. The more I typed, the more I shared, the more I started to feel better. Sharing is incredibly healing; I say it all the time.

During this time, I started to avoid my friends; I was ashamed of how much worse my hair was starting to look. It was thin before, but after having experienced a nonstop massive shedding from the 2 years prior, it was now a complete hopeless mess, and seemingly progressing each day. I didn’t want anyone to see me this way. I hid. In every sense of the word. I hid. I started avoiding phone calls, text messages and even started to skip the “reply” part of an email I would receive. It was just easier to push that part away (socializing) and focus on communicating and writing to women I met online, women who I knew understood what I was going through, that felt a whole lot safer.

As time passed I started to feel guilty for abandoning the friendships, and I started to feel empty.  I was saddened that I had pushed everyone away just so I wouldn’t have to share my secret and have them see me a way that I didn’t even want to see myself.

I wanted to reconnect, but how? So much time has passed. What do you say? Where do you pick up? “Hi, how are you… I’ve been balding for over a decade and it’s made me miserably depressed, sorry I didn’t call you back,” that just didn’t have the flow or direction I was hoping for.

I wrote emails, apologizing and explaining what has transpired in my life, or more appropriately put… what took over my life. I went out to lunch with someone else, and burst into tears over my jambalaya. I was scared, I felt vulnerable, but I was received with such love and understanding. I wasn’t judged. All that I had built up in my head of how no one would understand, was really just in my head. I also think when you share such a deeply personal part of your life with others; it can deepen and grow your friendship.

Make no mistake, this is still very much a secret of my life, but I told a few people I very much care about, and I don’t regret it. I know in writing with lots of women on this site, that others have also lost touch with their friends, and in some cases family, and I want to tell you… Your friends, your REAL friends, are still there, waiting for you to reach out. If you want to reconnect, make the choice, and decide how you feel most comfortable – phone, in person, email, telegram and do it.

It’s been quite some time since I’ve written a blog post. Now all at once I have several things I want to write about, but I’ll separate them into different posts, and play catch up that way.

Something I find myself confronted with from time to time, is balancing the things and activities in my life that I deem to be normal, with the reality of how my hair loss colors almost every situation.

Examples

A Run Is Not Just a Run

Running… turns out I love to run! Over the last few months as my asthma was improving I took to the streets with my running shoes and started pounding the pavement (quite literally) and realized, hog diggity dog, I LOVE RUNNING. I’m a slow runner, and I do have asthma, but I love it just the same. What I don’t love is being outdoors with sweat pouring out of my head highlighting how thin my hair really CAN look. So my solution is wearing a nike running headband, which is excellent at absorbing sweat and hiding the hairline and top of head. I also use a wide array of different sporty adidas and nike caps. I guess hair loss has caused me to be a tad bit more stylish out of necessity. I’d love to run sans anything on my head from time to time, but I wouldn’t be feeling the wind blowing through my hair, it would be more of a draft penetrating my scalp. So, no thanks.

Dinner Is Not Just Dinner

I’ve danced around tables at restaurants, playing musical chairs, grabbing the one that has the least overhead lighting. I’ve nearly knocked over waiters diving for the chosen one, the one that will least likely show to others that I’m losing my hair. I’ve enlisted my fiancé in this process as well, so he’s on the hunt for picking me a good one too, always asking me if I’m okay with the seat. I’ve changed tables at restaurants several times over, looking like a nut, because each table seemingly had more overhead light than the one prior. It’s dinner, it should be dark… really dark, like I want someone to put a flashlight to my menu. Ha ha.

Buying Clothes Is An Exercise In Visual Discipline

I’ve perfected the art of trying on clothes in dressing rooms without actually looking at my face. Neck down only. Unless it’s the Gap, god bless the Gap, whoever designed their dressing rooms definitely has hair loss.
——
The list can go on and on, but I suppose my point is, in time we learn to adapt. In an effort to maintain our sanity, our minds adjust to a new “normal.” We have to adapt and learn to work with the hand we have been dealt. I know in time my hair loss cards will include glue, tape, a hair piece, and possibly a razor, but I’m not there just yet. When I am, it will take time to adjust, as every step always has, but history has taught me that we are so much stronger than we give ourselves credit for, and I’ll be okay. Make no mistake, I still get sad, I still have my down days, I shed more today than I have been lately, and it all does affect me… but the length of time it affects me is so much shorter, my turn over period is much quicker. Thank Goodness!

Several things have happened since I last wrote, including a 3rd trip to see Dr. Greco for PRP therapy, I’ll be writing about all that soon.

I wish you all a wonderful and beautiful Sunday! Get out there and live your life, don’t let your hair loss rob you of that. Make adjustments as necessary, there will always be those for sure, but after pretty much losing out on my entire 20’s I want to encourage others to not make that same mistake. Those years, I’ll never get back.

Cheers to moving forward ( I have my glass of wine, do you have yours?)

XOXO

Hello Everyone!

Recently I ventured back to Florida to have another PRP (platelet rich plasma) hair loss treatment with Dr. Joseph Greco. I went back at the 4 month mark, which is before the time usually recommended to patients. I did so because I was quite pleased with the results I saw, and I wanted to make sure I kept my hair in that happy state it seems to be in. After 10 years of hair loss, when you find something that helps, you pretty much jump all over it… or at least I do.

So round two begins….ding ding.

I arrived at the hotel the day before my appointment, ready, excited and pumped with anticipation to have this treatment done again. I had a lot less apprehension because I pretty much knew what to except. As some of you will recall, a big point of anxiety for me during the last trip, was exactly how much pain was involved in this process. Well thankfully that anxiety didn’t exist because I had already experienced the process and knew it was not that big a deal.

I slept like a baby, no nerves whatsoever, part of that may be attributed to the wine I drank that evening. Gotta love wine! I awoke the following morning and stepped outside on the balcony with my cup of coffee and was just in awe of how beautiful it was. It was an incredibly gorgeous day so I just soaked it all in.

An hour before I was to depart, I dialed the front desk to ask for a cab to pick me up. Before I knew it I was being whisked away by some crazy driver who seriously needs to re-evaluate her profession. I’ve never in my life had a cab ride quite like that before. I found myself bracing at every turn and frantically clutching on to the seat for dear life. And to make matters worse, she didn’t take credit cards! Every cab pretty much takes credit cards nowadays, but her machine was getting serviced (uh huh). So now I had to rummage through my purse (something resembling a black hole) to pull out dollars and quarters. Shockingly I had the cash. Yay for spare change!

I walk into the office and am warmly greeted by the receptionist. I re-sign some forms and take my place in the waiting room chair. Not much waiting time before Dr. Greco appears and welcomes me back. I say my hellos to Val, his awesome assistant, and shortly after I’m in the chair getting my blood drawn. Like I mentioned in my first post, Val is a pro at drawing blood and there was no real discomfort there at all. [click to continue...]