My Journey with Lichen Planopilaris

Behold….My New Look!!!!

If you follow my Facebook Page, you know that I had a consultation and chose out a new “hair piece” which was ordered and delivered last week and yesterday I had my appointment to get it altered to match my hair style.

I went to Georgio 635 Salon a few weeks ago and had a consultation with Brenda. She measured my scalp and determined the colour match and we discussed my options. We agreed on a synthetic Topper for my first piece because it’s easier to manage and will fall back into place if it’s synthetic and I wa looking for something low maintenance. The downside is, I have to remember not to cook with it on or ask someone to put things in the oven or take them out as well as being too close to a bonfire or any extreme source of heat.

I called her last week and she placed the order and I went in yesterday afternoon for a desperately needed hair cut and fitting. While she finished up with her other client, she gave me the hair piece to play with and get used to.

We determined the length to cut my hair to match my 8-10 inch hair topper and she gave me a wash and a trim. Then she clipped the topper in place and matched the bangs and softened the edges so it all flowed. It still poofs out a bit at the top but it should mould to my head more and settled after about a week’s worth of wearing.

It’s weird. I am now a woman who wears wigs. I’m having a hard time getting my head wrapped around that now that it’s actually mine and in my possession but it’s still exciting! I can’t wait to go to a concert with my husband in a couple of weeks and be able to wear my hair down instead of in a bun like I normally have to (not really a concert hair style!!). I’m excited to have options again. But it will still take some getting used to. Because I don’t work. Outside of the home, I won’t be wearing it everyday, I can slowly get used to it and practice clipping it to my hair securely enough not to shift but gently enough at the back not to hurt my scalp.

In the end, it’s something, until a few months ago, I never thought I’d purchase or wear in my lifetime but here I am, a woman who wears wigs and a woman who can go out with “her” hair down again. It’s an experience with mixed emotions, but overall it’s positive and exciting!!!

Missed my other posts about hair loss? Here they are!

I’m Losing My Hair

An Update

....because let's face it, Bald may be Beautiful but Patchy Not So Much!

Living with Hair Loss..an Update

let’s face it, Bald may be Beautiful but Patchy…not so much!!!

I thought since September is Alopecia Awareness Month I would write about my hair loss again. I revealed my hair loss in a post in June and had amazing support and feedback…THANK YOU!

Sure Bald is Beautiful but Patchy...not so much!
It’s been 9 months since my diagnosis of Lichen Planopilaris and I’m happy to say I’m in a pretty good place. It feels great to have it out in the open and not feel that I have to hide or be ashamed of my hair loss, although I am still self conscious about it.

When I wrote before, I described how painful it was, but now I feel I have a pretty good concoction of medication helping me manage my condition. Although I still have to wear a hat outside to prevent my scalp from feeling like it’s melting, the regular, every day itching and burning is almost non-existent!!! However, if I miss a couple of days applying my protopic cream, it’s incredibly itchy and sore, I have learned to stay on top of my prescriptions!

I’ve come to terms with wearing a hair piece! The type of piece I need is actually called a “toupee” but I’m not ok with calling it that or wearing a “toupee”, I am not an old man. I will soon be ordering and wearing a “hair piece”. I went to a consultation and got everything I need…colour match, measurements, etc. I’m still doing some research and want to shop around but I’m pretty excited about ordering it and being able to go out and wear my hair down for the first time in over a year! WooHoo!!! Once I have picked and ordered my hair piece I’ll be sure to fill you in with all the steps and details it takes to get a new look! (Stay Tuned!)

I’m still losing my hair, but the hair loss has thankfully slowed down. It can still be challenging to cover up my scalp but with my new options of hair pieces and my growing hat selection, I’m feeling better about things and more confident. When I see the back of my head, I still get taken back…”Is that my head? Where did my beautiful hair go?!” but it’s starting become more familiar and I am accepting that.

Over that past few months I’ve learned a lot. I’ve found a great online support where I am able to learn a lot through others’ experiences. I discovered my grandmother had a form of Alopecia, although it was never talked about. This information helped with the “why is this happening to me” question but saddened me to think my grandma suffered in silence and that it is in fact hereditary and I can pass this down to my children. I have come across great articles regarding hair loss and have had lots of inspiration through hearing other people’s stories.

So again, I write and encourage you to learn about as many rare medical conditions as you can, know what’s happening to your body and learn to recognize when your body is telling you something is wrong. Don’t suffer in silence, seek out support and no matter what, love yourself, because in the end, that’s what makes the difference.

It’s time to get Real…I’m Losing My Hair. Please Read & Share My Story

I’ve been thinking about writing this post for months, I’ve even wrote a few that I didn’t feel comfortable posting. But it’s time to get real. It’s time to face the truth and share my story. I have a rare disease. I have Lichen Planopilaris. It’s a form of Cicatricial Alopecia. I am permanently losing my hair. One day I might be bald. One day soon I will have to start wearing wigs. Here’s my story…

At the beginning of 2012 I noticed some red bumps on my scalp but didn’t think much of it as it wasn’t bothering me so I shrugged it off, thinking it would go away (big mistake!). I became pregnant with my son and had him in June 2013. After he was born, I noticed the hair on the crown of my head was a little thin so mentioned it to my doctor. I assumed it was due to hormones from my pregnancy and never connected it with the inflammation I found a year and a half prior, I had actually forgotten all about it.

My doctor ran a bunch of tests….fungal infection, thyroid, celiac and more. After a few months of tests and trying different creams with no results I was referred to a dermatologist. I was put on a waiting list. It took over four months. When I finally saw the dermatologist he didn’t give me the time of day, barely looked at my head and wrote a prescription for Rogaine, blaming my thinning hair on hormones as I had initially suspected.

When I went to the pharmacist, they said I couldn’t take Rogaine because I wanted to get pregnant again. I got a second opinion. The second dermatologist I saw in September 2014 took the time to examine my scalp and wanted to do a biopsy. I couldn’t get an appointment until December that year.

On the morning of my 30th birthday I had my biopsy…Happy Birthday to Me! I got the results in January 2015 and was diagnosed with Alopecia Areata. After sending the biopsy results to my dad’s cousin who is also a dermatologist in another province, we changed the diagnosis more specifically to Lichen Planopilaris, 3 years after I noticed the initial symptoms.

I’m not writing for pity or anything like that of course, I often feel guilty about getting so upset with my situation because I’m generally healthy, it’s not terminal. But it took me 3 years to get diagnosed. 3 years of permanently losing my hair before I started to receive treatments. I’m writing because I hope you will read and share my story so people will become more aware of this disease. So if someone notices these symptoms they go to their doctor immediately and hopefully their doctor will recognize the symptoms and refer them right away because early intervention is the only hope to save your hair.

My scalp burns. It itches like crazy. I’m terrified of scratching it because when I do, more hair falls out. When I lose a hair, I usually lose the follicle too, having it replaced with scar tissue so it can’t grow back. Every 3 weeks I see my dermatologist for Cortisone injections…usually about a dozen needles jabbed in my already sensitive scalp. Between visits I apply a Protopic cream twice a day. I hate this. It forces me to stare at my balding scalp and apply cream to it, greasy cream so my hair is never nice and soft anymore and it makes it harder for me to hide my exposed scalp. The cream also has some side effects which doesn’t help it get in my good books. It causes my scalp to be even more sensitive, I can’t be outside in the sun for more than a few minutes without my scalp feeling like it is sizzling. I have to wear a hat and am getting in the habit of carrying one on me at all times as I barely made it into the grocery store a few weeks ago, grabbing the shopping cart and loading my son in took too long in the hot weather. There is also a very rare side effect that causes it to mix badly with alcohol and I am lucky to experience this on the rare occasion. Sometimes when I have a drink I get extreme hot flashes to the point that I can’t concentrate on anything.

As well as the steroid injections and cream I use the Body Shop’s Ginger, scalp repairing shampoo, gentle, paraben free conditioner, I take B12 supplements and have a cream I can apply if the itching becomes unbearable between shots.

That pretty much sums up the medical side of it all. Here’s a little about the personal side of permanently losing your hair…

It’s humiliating. I don’t like to think of myself as a superficial person but a woman’s hair is part of her beauty and when you know you’re losing that, when you look in the mirror and don’t recognize a part of your body anymore, well it’s not a great feeling.

It’s sad. I am mourning the loss of my hair and in doing that I seem to be going through the traditional stages of grieving. Before I had to apply the cream I was definitely in denial. There have been a number of days where I’ve broken down and cried, probably confusing my son. I wish I could be told a reason why I’m losing my hair, I’ve always been very careful not to use a lot of products but there isn’t a known reason. Some people believe it’s an autoimmune disease but I’m told that’s not definite. The way my mind and personality works is I need a purpose, so in writing this and with your help to share my story, I can at least feel that spreading awareness about this rare disease can help others and through my loss and suffering, hopefully others can be spared.

It’s painful. I already shared a bit about how sensitive my scalp is with heat but it’s also little things. It’s excruciating when my son’s little fingers get caught in my hair or he accidentally pulls it. Sometimes , after a few attempts, I have successfully put my hair up and covered all the bald spots but the hair is pulling and it’s too painful so I have to start again. Sometimes I just have a constant dull pain in the back of my head.

It’s anxiety provoking. I’ve never considered myself an anxious person but as I lose more and more hair I become more and more anxious about things. Instead of getting excited to get dressed up and go to a formal event with my husband, I worry about my hair and wish I didn’t have to go. Our good friends are getting married outside this summer and as happy as I am for them and their special day, I can’t stop stressing about how I’m going to sit outside while they share their vows. Our photographer only does family photos outside in the summer. Will my kids be embarrassed when I take them swimming and I can’t wear my wig in the pool? I’m self conscience sitting in rows like at church, worried if I did a good enough job hiding my scalp, worried they’ll notice.

I’m partly writing this because I want people who know me personally to know why I am experimenting with different styles of hats…and if I’m wearing one that doesn’t suit me, please tell me! I can still hide my balding scalp when I wear my hair up but it is getting more and more difficult to hide so if you see me and see my thinning hair parted with my scalp exposed, please tell me so I can fix it. When I find the courage to go wig shopping, you won’t have to ask why my hair is different, you will have read this and you’ll know why I have to wear someone else’s hair on my head. If you see me outside without a hat and I’m running like a mad women with my hands on my head, you’ll know it’s because it feels like my scalp is melting and I’m running to find shade or shelter. If you have any questions please ask me here or in person, but please know that although I’m getting better, I still struggle talking about it without crying, I’m ok with crying, I just want you to be prepared and maybe not ask me in a very public place!

Looking on the positive side of things, I’m so grateful for the love and support I’m receiving from my husband and the friends and family who know. I’m grateful to be able to work from home, blogging and making things for my Etsy Shop because I used to work with young children and I don’t think I could face their honest curiosity…“Miss Rachel, I can see your skin” “Miss Rachel, are you bald? “Miss Rachel, are you wearing a wig?!” “Miss Rachel, why are you crying?”. I’m grateful for the medical help I’m receiving and for Canada’s Healthcare system. I’m grateful I only have hair loss on my head, although a little on my legs wouldn’t hurt if I didn’t have to experience all the itching and burning pain that goes with it! When I first noticed my thinning hair I would say, “I’ll figure it out, going bald isn’t an option!” But now, the reality is, that’s my only option unless we find a concoction of medication to control my hair loss which we haven’t been able to do so far. Although I’m still adjusting to this reality, I always remind myself, it could be worse, I still have a lot to be thankful for.

So please please please share this post, spread awareness of this terrible disease so it can be treated early. Please pray for all the doctors and researchers treating Lichen Planopilaris and everyone living with this disease. And please don’t stare if you see someone with a strange balding pattern on their scalp, either they’re brave enough to walk around with their thinning hair or they don’t know it’s showing. Thank you for taking the time to read my story.

Lichen Planopilaris...permanent hair loss

Please read and share this story to bring awareness to this rare condition.

  This is the crown of my head when my hair is down, you can see the inflamed redness on my scalp where the disease is still active and I’m still permanently losing my hair.

Here’s a more recent post for an update on where I’m at now!