Never Sell Your Saddle

 

Never sell your saddle.  I remember seeing this meme on social media once: don’t sell your saddle and there was something that hit me deep; a deep truth that went beyond the saddle itself.

“Don’t sell your saddle, Don’t give up on your dreams.  Take time to see them through, there is no magic recipe, hard work makes them come true….”

My saddle is currently sitting in Canada under my mom’s supervision.  It’s been sitting there since I made the move 8 years ago to Australia; but one day I will have it with me again.

I remember when I bought my saddle; a Bob’s Custom Duane Latimer reining saddle.  I went through a few different saddles over the years till I got this one and not only was it a comfortable ride but most importantly it fit my horse Ares.

And that is where this post is headed; my horses.  As most little girls I was in love with horses; seeing them afar, having my own imaginary horses, getting older and having the occasional ride on my mom’s or oma’s horse and then there was the time I entered the show pen and I was hooked. As the years went by that love with this animal grew into something that even now, I have difficulties describing. The best way to describe it is a deep-down blood tie; and in the years since moving to Australia I mourn the loss of the daily interaction I had with my horses.

I say horses but I actually only owned 2 horses but I worked with and rode many more.  My home in Canada was a boarding stable that homed 100s of horses that I would help take care of.  They were mine, in the respects that I treated them as if I actually owned them aswell as their actually owners

I bought my first horse, a yearling filly Suzie from a PMU ranch when I was 20years.  If you don’t know what a PMU ranch is, well that’s simple, Pregnant Mares Urine.  These are the places that collected the urine to make our birth control pills.  It was always understood, and maybe its still today, but a lot of these ranches didn’t care about the animals they were breeding, the only concern was the end product.  But there are some ranches that saw the benefit of breeding registered horses of decent bloodlines that way not only did they have an end product but they also had horses that were more sellable.  And that was what my little filly was.  She was a registered Quarter Horse with good decent working cow bloodlines.  And with some research into her breeding, she had some racing blood too.  Specifically, she was a descendant of Go Man Go; a red roan stallion known for his speed and attitude. My Suzie definitely had attitude.

From the day I brought her home she showed her attitude but she also showed an amazing wiliness to please; her way.  She taught me so much in her life from the first day I put her in the round pen, to the first step in the stirrup, the show pen, the trail rides and to the day I had to say goodbye to her.

She was never meant for the reining pen; she didn’t have the breeding or the skill level to be highly competitive but the one thing she had was heart and there was never a time that she didn’t put her whole heart into what was asked.  She also fought you just as passionately; when she didn’t want to do something.  I remember one time at a riding clinic Suzie pitched a fit, I learned over the years the best thing to do was not to fight back but let her run it out and so we did, circle after circle till she was tired enough to listen. Much like a parent watching their child stomp and kick, sometimes you just have to sit back and let them stomp it out.  That race blood in her always worked against both of us as it took so much to wear her out and she only got fitter in the process.  Afterwards the trainer came up to me and mentioned how well I had handled the situation. Patience is what she taught me more than anything, and compassion to recognise when something is not going the way you want it to at that moment, to remember that it is more than just me in this.

Suzie taught me to have trust and faith and what it means when another puts their faith and trust in you.  We went for many trail rides and she would always walk the path I pointed her to.  Even when one day that path led as to a water hole.  She walked right into the water even when the mud surrounding us came up to her knees.  She had to jump out to release herself out of the mud which unseated me right into that water hole.  I remember picking myself up soaking wet and also struggling out of the mud laughing and Suzie just standing there waiting for me.  Then there was the time we went for a trail ride down by the river with some other riders.  Most horses won’t go willingly into water but not Suzie, she enjoyed water as much as I did. We were all standing in a calm part of the river letting the horses have a drink and cool off.  Suzie decided this was a good time to play in the water splashing every person and every horse near us and she almost went down for a roll. Make good decisions because you don’t know who will follow you. 

We shared so many highs, laughter and tears of joy, but with the highs there was some deep lows.  And in those lows Suzie showed her heart just as strongly.  In my later twenties I went through a period of suicidal depression.  And I leaned into Suzie more than anything or anyone else.  There were days I would just sit in her stall and she in return would stand blocking the doorway with her head over me.  Much like a mare over her foal, others in the barn would be calling my name looking for me but with Suzie blocking the stall entrance no one knew where I was and I felt safe.

As she took care of me during those dark days, in turn I was there for her on her darkest. It was a wet snowy February when I got the call that Suzie was colicking.  Anyone having been around horses for anytime knows when a horse colics it may pass uneventfully or turn into a shit show fast.  And that was what happened that day.  By the time the vet showed up she didn’t even look like my horse anymore, her heartrate had spiked so high that the vet was concerned that she wouldn’t be able to stand. He gave her a cocktail of pain reliver just to bring down her heartrate to assess the situation.  But as soon as the cocktail kicked in, she collapsed. I remember going down with her in the cold mud; and when I stood up, she stood up. She went down 2 more times before not only my mom but the vet had said that I was going to have to lay in the mud with her just so she would lay still.  And I did that for her.  I still remember that day clearly.  We were going to have to say goodbye and I was going to do that laying in the February mud holding my Suzie

RIP Suzie June 1994 – February 2004

Anyone that has owned an animal/pet/fur baby knows that we will most likely outlive them.  It is our duty and honour to be there for them during their darkest time, just as they have always been there for us.

That was one of my hardest days, even today, that day marks a dark day incomparable.  As this post started: its more than a love, it’s a deep blood tie; and on that day I went down to the barn that night and climbed on the back of my gelding. 

My gelding Ares; he was the son from the mare my mom owned.  He was my next project, to be trained, shown and potentially sold with profits split between mom and myself.  But as this little gelding grew up, he was showing more promise in the show pen and a more willingness to try.  And as it was he ended up being the only horse I had after Suzie.

Ares showed more than even I gave him credit with for so many years.  I always considered him my little unbroke pony.  As a 2-year-old he was tiny and he spent a lot of time in pasture just growing up; but that little pony grew up to be a true quarter horse size; in height and size.  And as much as I thought of him a work in progress, he proved himself time over time just how much he knew, how much try he had and how much he could be trusted.

During one horse show where I shared showing with him, with my best friend’s young son.  We switch saddles back and forth, his youth saddle with stirrups barely wrapping around Ares’ belly and my own reining saddle.  Ares never faulter for either one of us that day.  He did everything asked of him and more.  He was also the horse that you can jump on bareback anytime with just a halter and ride.  He went where you wanted to go with no complaints and gave as much heart.

Of all the horses I have ridden I never experienced a horse with such a high work ethic to please.  If horses could be known with such, but he did.  Even out on pasture with grass up to his belly and a field of other horses; if I came to the gate and whistle for him, he would come running.  He also showed this work ethic when one time just before a show I had the farrier come out, I knew the shoes looked tight but I was told by everyone that everything was fine.  Well, the day of the show, loading him on the trailer he was sore and it didn’t change at the show either.  I even had the show’s farrier check his shoes; it was mentioned to just to walk him and he never did argue, where I lead, he followed.  Wasn’t till we got home and I had the shoes pulled thinking that was our show season finished that Ares walked completely sound.  Trust your instincts.

The year before I moved to Australia, Ares and I had our final show and he gave me his best to that date with our highest score.  He has now moved on to retirement with my mom.  After my mom having to say goodbye to Ares’ mom, Ares went to live with her, while I moved to Australia.  Saying goodbye to Suzie was difficult but saying goodbye to Ares was nearly as hard. Knowing that we were parting it felt like a part of me was being ripped away. After 8 years I have yet to mend that rip but I have understood it as grief.  Grief never goes away, especially when that source comes from a deep internal spot within but that grief changes, it molds around you.  So, you never forget all the moments and memories that you have learned, felt and was brought into your life.  Horses are imbedded in my blood and in my soul; it in part makes me who I am.

So, NO I will never sell my saddle, for it’s a part of me, like the horses that ride under it. Its part of the dream I got to live and experience, and the dream that I will never let go of.

 

 

 

 

Finding My Purpose: Growing Into Who I am As A Bald Woman

 

“If I can prevent this from happening to any other little girl...”  That’s what I use to say in the early years living with alopecia areata.  I hated this disease. It took away my identity as well as my hair. It was my dark shameful little secret for so much of my life.

Needless to say a lot has changed over the course of nearly forty years.

I was first diagnosed with alopecia areata when I was about 9 years old.  Mom took me to our dermatologist hoping to find out why I was losing my hair in patches.  There wasn’t a lot of information back in the eighties concerning alopecia and we left that day with a diagnosis of that I was too stressed; that was why my hair was falling out and a bottle of Rogaine.  After that I remember so many “helpful” tips from family to not only to grow my hair but how to hide the bald spots.  Mom did the best for me even with everyone chiming in with their opinions. It was these helpful opinions that would haunt me for years to come.

I was a shy child growing up, and school was tough as a chubby kid.  I played alone more often than not.  My younger brother had more friends than I did.   I did make school friends but nothing that ever stuck into lasting relationships.

And when alopecia entered my life it made perfect sense to keep those kids at bay.  Especially when the hair loss became extensive enough that wearing a wig was a necessity.  That was a particularly difficult time.  I finished the previous year of school with thinning hair to the next semester with a full head of synthetic hair. I remember one cruel day when walking the hall to my next class and someone actually ripping off my wig, all the kids were laughing, pointing and calling out “wiggy”.  I had to bend down in the hall to pick up my wig off the floor.

Thankfully I only wore that wig for one year.  The fates would have it that my hair was to grow back.  I lived that alopecia period as something that had happened.  It was in the past, a childhood thing that I moved on with.  But it was not so; life is funny that way sometimes.  High school and my twenties saw me hiding still; I would get a bald spot or two that I would cleverly hide with hair styles.  I always kept my hair long just so I would have something to use to cover up spots as they came and went.  I still never talked about living with alopecia; only family and the closest of friends would know about it. 

I was still a shy person as I entered adulthood, never wanting to get too close with people.  I still had a weight issue and had my own personal load of insecurities.  There was a period of time when I turned 24 that I entered a really low period of depression and suicidal thoughts.  It was just after my parents broke up for the second time.  They first divorced when I was just a couple years old and I grew up not really knowing my father.  After many years; when my brother and I were teenagers; they tried a second time.

 I was 23 when they broke up, living on my own in my first apartment.  My father had confronted me on the breakup.  I remember saying that I was ok with it, I was an “adult”, and if this will make them happier then it was for the best.  I remember saying to him that I don’t need my parents together to have a relationship with them.  Sounds pretty grown up, doesn’t it??   But it was exactly how I felt.  They gave it a try twice and it just wasn’t meant to be. 

Unfortunately that is not how my father saw it.  He told me that if I wasn’t willing to put them back together then I could “get the hell out of his life”.  Those words still ring in my ears today after so many years, and that was the last time we spoke.

With that I spiralled into a dark depression for a couple years.  Blessedly mom was always there, she was my rock and with the help of a couple really close friends I slowly saw the days brighter.

It was during this time that I was spending a lot of time at a horse boarding facility and I connected with some wonderful people.  People that shared the same love and passion for horses, which I had for my own horse.  It was here that I made close friends that I trusted myself to lean on.  I still have those friends today.

I still remember what that doctor had said when I was first diagnosed, that I was too stressed.  But that entire time of my depression I did not lose any hair.  I still had my alopecia secret intact.  So much for stress causing my hair loss.

It was a few years later that my alopecia areata decided to return to my life.  I was in my later twenties and I started noticing more hair in the bathtub drain and in my hair brush.  I was always so careful, checking for any new spots, treating what came up. This time it was different. 

Getting on the internet was easier as well at this time.  I started researching alopecia for the first time.  I learnt that it was an autoimmune disease, which funny enough apparently can be triggered by stress.  I started finding support groups, and since growing up with alopecia this was completely new to me.  Up to this point I never knew another person with this disease.  All the years going to the dermatologist to treat my alopecia; I never recognised another alopecian there or saw any literature or support groups notices.

Statistically speaking approximately 2% of the world’s population has a form of alopecia.  I also learned that there were different types of alopecia. Alopecia areata being the type of bald spots on the scalp which I grew up having to the most extreme version, alopecia universalis which is complete hair loss on the body and scalp.  This is what I now live with.

As my alopecia progressed I went to my doctors monthly, and started aggressive treatments, mostly consisting of corticosteroid injections to the scalp.  During the worst of the treatments I was getting close to 100 injections at a time. We also threw in the occasional lotion, potion and any other treatment that would grow my hair back.  I felt like a human pincushion; which also played on my mental health. 

This is when I decided that if I could possibly prevent any other child from going through what I went through with this disease then I was going to do it.  With the help of doctors and the various support groups and actually speaking to others with alopecia, I started to feel my voice and how I can help bring awareness to a disease that is not often spoken about and holds so much shame.

I started with a Facebook page and adding my journey with alopecia in blog posts.  I stood in the middle of the baseball diamond at a local game to speak about alopecia.  I had articles written in local papers and spoken on the radio.  All in the name of awareness.  I wanted the world to know that alopecia existed and not to have another child be scared.  I was standing on my little soap box.

It wasn’t til I had other people come up to me sharing their stories; stories that often times had nothing to do with alopecia, that something changed in my narrative.  I found myself listening and empathising.  I was growing and learning to see there was a much bigger picture out there in the world. 

We all have our own story, as different and as unique as we all individually are.  These journeys make up who we are.  We each deserve to share our story, to have someone to hear us and understand.  It’s more than sharing my alopecia story and bringing awareness to this disease.  It’s still about how to help that little girl going through alopecia, but it’s not about preventing it anymore.

Yes a cure one day would be fabulous!  But until that day preventing is more about sharing, not feeling alone, about connecting with a community that understands what if feels like going through a difficult time.  Whether that is alopecia, depression, cancer, or anything else that this world throws at us.  To know that you are not alone; even if my story is different than yours; we share a commonality in the struggle, the acceptance and the growth.

My journey into alopecia may have started with hiding and then bringing awareness to this one topic but it has definitely grown into something much larger. With living with this disease I learned how to tap into an inner strength I didn’t know I possessed.  I still speak out and write.  I live openly bald and am still overweight; but now with no thought to what others think. I have people come up to me asking did I shave for someone with cancer but I also have them ask if it is alopecia. To me this is progress.  I have moved to the other side of the world, I have found love with a man that loves and supports me just the way I am.  I have even recently been on podcasts to share my thoughts. My plans are on doing even more.

 I know now today that this is my purpose; to show and share with others.  I listen with a compassionate heart with others.   I am grateful that this once hated disease, this once shameful dark secret is no longer.  And I am also grateful for what it has taught me about the world and about myself.

Hair Today, Gone Tomorrow Or Am I Healing?

 

For the last few months, I have been experiencing hair growth on my head.  At this stage, it is still fine blo
nde hairs thinly scattered in an un-uniform way.  When I did have hair it was dark brown and thick; also the few years before going universalis I was seeing grey hairs!!  I was colouring my hair as to hide these nasty greys.  Funny thing about looking back; back then I was worried about hiding grey hairs.  Then it was hiding the bald spots. 

Why is it growing this way? Why is it blonde? Why is the growth so scattered?  Why now?  What is going on inside my body to cause such an effect?  How long will it last?  Will it all come back?  Will it stop growing again?

I do not have any answers to these questions.  However, I do have a few thoughts.

1.       Living with alopecia is unpredictable.  One day you have a full head of hair, then the next you are noticing more hair in the shower or in your hairbrush or even scattered on your pillow.  You do not think much of it at first.  Maybe it is the season, like the dog shedding its coat.  Then one day while getting ready and brushing your hair you notice visually or maybe it was running your hands through your hair; that smooth skin where it was not before. 

That spot maybe grows back or maybe that spot gets bigger.  Maybe that spot turns to more spots.  Then the roller coaster ride starts; more spots, some grow bigger, some grow back, it all grows back, it all fall out….. and on and on the ride goes.

I call it The Unpredictable Alopecia Ride.  The one roller coaster ride that changes constantly and is different for everyone that is on it.  Not only the physical aspect of living with alopecia but also the emotional toll it takes.  How each person with alopecia chooses to live with this disease is theirs alone; but at least we are joined by the disease itself.

2.     My other thought lately has also to do with what is happening inside our bodies.  Why is this autoimmune disease attacking my hair follicles?  What causes autoimmunity?  In addition, how can I help my body in such a way to lessen the attacks?

I am not doctor, or even work in the medical field. However, I am curious and an amateur researcher.  When a topic interests me, I tend to fall down the rabbit hole of learning more.  When I was looking at how to lose weight, with years of doing the calories in, calories out; eat less, exercise more diet.  I needed to try something else.  I fell into the world of intermittent fasting, and down the rabbit hole, I went to learn more about this “diet”.  A diet it is not, it is a timing method of eating and not eating. It is about giving your body the necessary rest it requires to heal, to regenerate, and to detox.  We have all fasted at some point in our lives maybe we just did not recognise it.  We fast while we sleep; from dinner to breakfast, we are fasting.  Intermittent fasters just expand that time.  Some of us skip breakfast and wait til lunch, others will just have one meal a day.  Me personally, I never was a big breakfast eater, and I like the idea of having my one big meal at dinnertime and with an appetizer like snack before that meal.  And I love the flexibility and the relationship with food this has given me.  Especially when I saw the weight loss happening.

Nevertheless, what did I learn in this journey?  Fasting is A LOT more than weight loss.  When given the time to let my body rest from digesting food I am letting other actions to happen.  My body is healing from the inside out.  How does that happen with fasting?  When we fast we lower insulin which then allows the body to tap into our fat stores to keep our body running.  A process of ketosis begins as our body is breaking down fat into energy.  Then a wonderful thing happens… Autophagy.  Autophagy allows our body to break down and reuse old cell parts so our cells can operate more efficiently. It's a natural cleaning out process that begins when our cells are stressed or deprived of nutrients. Researchers are studying autophagy's role in potentially preventing and fighting disease. 

Diseases maybe like alopecia? Is this what is causing the regrowth?  Am I healing my alopecia?  From what I have learnt is that autoimmunity is an inflammation response in our bodies.  Well if fasting is, healing inflammation is it possible that it is healing the inflammation that is causing my body to attack my hair follicles?

I am not here to tell you to do intermittent fasting.  But it does not hurt to try does it?  Even if my body is healing from the inside out or not; and all the science is proving that it is; the weight loss is great.  I have been fasting for 2 years now (October 2022) the first year I saw great weight loss but this past year I have been at a stall but this was when I started noticing other changes in my body like hair growth.  Time will only tell if the fasting is indeed making the change or is it The Unpredictable Alopecia ride. My hair could stop growing at any time again, but at least I am giving my body a fighting chance to heal.

For now I am walking around with fuzzies growing and watching them grow longer.  I am an experiment of one and I will continue to observe what is happening until such time I am done with watching.

 

 

Choices

 

With the recent FDA approval of the drug “Olumiant” (baricitinib) to treat alopecia; it has gotten me thinking of choices.  The choices we all have concerning how about we navigate thru this journey of alopecia.

Alopecia takes  away the one fundamental choice we had prior to our first sighting of that clean bald skin, that coin size area where once we had our lush locks. It takes away the choice of what we do with our hair; cut, curl, colour, and style how we want and when we want.  We watch this area like a hawk and if you were like me started to count the hairs in my hair brush and anywhere else we found fallen hair.   I started examining my scalp each day and night for any new spots or thinning; watching in horror, fear and anger.  Alopecia had officially taken over my control and choice on what was going on with my hair.

It took many years of tears and anger, shame and hiding, depression and anxiety to understand that there are many options available for me; for all of us going through this disease.  So many more than when I was first diagnosed in the 1980’s.

Just some of those choices are:

1.       Treatments – these normally treat the symptoms of alopecia and usually consisted of an immunosuppressant drug.  I did the cortisteriod injections for over a decade trying to stay one step ahead of the bald spots.  I even convinced my doctor to give me the injections in my eyebrows when they started to fall out.

I even did the delightful DCP (diphenylcyclopropenone) treatment which the side effects far outweigh any sort of benefit.  I would blister so bad that my pillow would be wet with the serum from the broken skin of my scalp.

And now we have the new immunosuppressant drug Oluminant, a JAK inhibitor.

The following is taken from PUBMED

JAK inhibitors are small molecules that are capable of blocking T-cell-mediated inflammation. They have been shown to be beneficial in several inflammatory conditions, such as rheumatoid arthritis, psoriasis and psoriatic arthritis. Treatment with three JAK inhibitors, ruxolitinib, baricitinib and tofacitinib, led to hair regrowth in alopecia areata patients, and similar effects have also been demonstrated in animal models for alopecia areata. Based on these data, JAK inhibitors have gained widespread popularity for the treatment of moderate-to-severe alopecia areata patients. Nevertheless, treatment with JAK inhibitors can lead to adverse events, with infections being the most worrisome. Furthermore, the durability of JAK inhibitors for alopecia areata is still unknown. Clinical trials with topical and systemic JAK inhibitors for alopecia areata are ongoing, and hopefully will provide us with better understanding of the safety and efficacy of these medications. If indeed these treatments will prove to be effective and safe, they might become the first FDA-approved treatment for alopecia areata.

 

And recently posted on the NAAF (National Alopecia Areata Foundation) website:

“This is the dawn of a new era,” said Nicole Friedland, President and CEO of the National Alopecia Areata Foundation. “For the first time, alopecia areata patients have the option of an approved treatment that has undergone rigorous testing in clinical trials. We anticipate more treatments to come, bringing additional choices to our community.” Olumiant™ (baricitinib), belongs to a class of medications known as Janus kinase (JAK) inhibitors. Oluminant™ is approved by the FDA for adults with (severe) alopecia areata. Olumiant™, from manufacturer Eli Lilly and Company.

 

2.       We also have the choice to cover up; which can include all, or even a combination of choices of wigs, scarves and hats.  Personally I have done all of those at one time or another.  And even have fun with the choices that it gives.  There are many beautiful natural looking wigs that make you feel and look like yourself prior to any bald spots.  I even had fun with flamboyant colours of wigs and scarves and stylish hats.

There is even the cover up option of tattooing.  You can get a scalp tattoo to resemble the buzzed hair look, to fill in areas that are clear.  Or decorate your head with a decorate tattoo that speaks to you.  I have such tattoos; one on the back of my neck to remind me that I’m more than my hair and another on the side of my head to mark my 1 year anniversary of shaving my head.

 

3.       Which comes to another choice, a choice many may think is courageous and bold.  Shaving the remaining hair off and living openly bald.  This is the choice I had personally come to.  I had tried all the others and still continue to do so (other than the treatment part).  This is not to say I will never do another treatment again but at this stage of my journey I have chosen not to.

 

4.       Another choice worth exploring is the research going on about autoimmune diseases being a result of an inflammation in our bodies. I am currently reading Why We Get Sick by Benjamin Bikman and he mentions autoimmune diseases as well as other health concerns, definitely worth reading for anyone.  For the past year and a half I have adopted an intermittent fasting lifestyle not only to lose weight loss but also for all the many health benefits that comes with it; one of which is reducing inflammation.  Interestingly within 6 months of starting IF I found new baby fine hair growing.  Something I hadn’t seen in over a decade.  I watch curiously as my hair got a little bit longer but in the end I shaved this as it was patchy.  I haven’t seen any new regrowth since then but I still watch to see as I continue my IF lifestyle if my hair will start to come in again. 

I have now made a choice that if it does or does not I won’t let it take away my control of what I do.

There is many choices and combination of choices we as alopecians can do, ones that we are personally comfortable living with.  And many choices we may later decide to do.  We didn’t choose this disease but we can choose how we will live with it.  No choice is the wrong one and what one person may do, may not be something that another would consider. 

We are in this alopecia journey together, all the emotions and stages we have all felt together.  We can support each other, share together but the choices on how to travel this journey are ours to choose.

 

 

My Apology to Self: Part 1

 This is an apology to my Self; to my body, to my mind and to my soul.  For all the things I did to myself over the years. Starting from my childhood, into the years of anxiety and depression and the years of treatments I did to regrow my hair.  I want to also want to say this: that I don’t regret what I have done for without that I would not be where I am today.

 I find myself entering into another phase of self-exploration and self-love.  When I first shaved my head and decided I was done with all those painful treatments.  Treatments that not only physically hurt but also caused a large amount of emotional pain.  I remember looking at myself in the mirror that night, thinking and saying to myself that I was Fabulous.  I learned how to start loving myself regardless of the lack of hair.

Now for the last year and a half, I have been following an Intermittent Fasting Lifestyle.  Something I started after hearing about my brother doing it and having success with weight loss.  My weight has been something I have battled since childhood. I was always on some sort of diet.  Lets face it, I will own it right here, right now, I am obese and have been for a good portion of my life. Owning this is also an apology to myself that I always told myself I wasn’t.  But numbers don’t lie.  

My diet life always consisted of counting calories and if I workout harder I will lose weight.  I was also a closet eater; hiding food or quickly eating on the way home before anyone noticed.  I had a food obsession.  As a child I was bullied for my weight and then when I started to lose my hair, well the bullying only got worse. As you can imagine I did not have much self-esteem, I always felt lacking.  I went about my life, and participated in activities with my family and friends; I showed my horses, went out and had fun but there was always a part of me that felt I stood out in the wrong way, and that only made me want to hide my Self more.  “Hide yourself Terri, don’t stick out, don’t be seen, don’t let them know you are overweight or that there is those bald spots”  

Well today “Im sorry Terri that I did that to you” 

So here it is the next phase, I have learned to love myself bald.  I Am Bald and Fabulous.  I don’t give my baldness much thought anymore, it is who I am.  I own it fiercely. Now I am learning to love my body.  And fasting is teaching me that.  When I first started I have to admit I didn’t know much about it other than the obvious, don’t eat for a period of time then eat.  Well I fell down the rabbit hole learning about this “new” lifestyle.  Firstly it's not a “new diet”; it's been around for hundreds of years.  Also it's a lot more than just not eating.  Basically it's about giving your body a time away from constant digestion.  To allow your body to work on other things in your body, like healing.  If your body is busy digesting it can't work on other things as I have learned. The short story:  When we eat insulin goes up, insulin stores fat, as long as insulin is raised you can't burn fat.  Now if you want more on the science there is so much literature out there.  My biggest sources have been Fast, Feast, Repeat by Gin Stephens and The Obesity Code by Dr Jason Fung, as well as many many more, including podcasts.  

Knowing the starting stages of how insulin works in my body, no wonders why my old standby of calories in, calories out.  I could not out workout the calories I put in my body for the long term.  Short term; Yes, but as always the weight would come back with a vengeance.

I started fasting and I quickly lost the weight I put on after getting married.  Ah married life, you get comfortable and let some things go.  Absolutely no regrets, but time to take care of that body that I have to get me through the years.  What I unexpectedly found after the first three months was regrowth!  I was growing hair, something that had not happened in over a decade.  It was coming in fast and was baby fine.  I watched it curiously, unbothered if it stayed or it went.  Thanks to the acceptance I found in myself by this time.  Eventually I shaved it as it was becoming more noticeable and was very patchy.  But this got me down another rabbit hole of researching intermittent fasting.  

I was told many years ago that going gluten free would fix my alopecia.  With the diet mentality that I had already and just coming to accept myself bald; I was unwilling to try this.  The notion is that gluten causes inflammation in the body.  And most autoimmune diseases are a result of an inflammatory response.  And  alopecia Universalis is an autoimmune disease that affects the hair follicles of my body.  I guess I would consider myself lucky that my autoimmune disease has only affected my ability to grow hair and the eczema that I was born with.  Although looking back at the struggles I had with my alopecia, I don’t know that luck is a fair word.  But my rabbit hole digging also revealed that fasting is anti-inflammatory.  By allowing my insulin to lower, and giving my digestion system a much needed break, my body system can go around repairing and healing other areas of my body including reducing inflammation.  So was the hair regrowth a result of this?  Well only time will tell and I am an experiment of one. 

What has happened with the regrowth?  Well it has stopped.  As I reached closer to the set weight point that I was before marriage and moving, my weight stalled and plateaued.  One victory in that plateaued period is that all during the Christmas and New Year celebrations I didn't gain anything! I am currently at the same scale number I was when I was undergoing all those treatments a decade ago.  Those treatments that were adding toxins to my bruised and shame ridden body; to grow hair.

  “I'm sorry Body for doing that to you, I just didn't know better.”

That scale number might be the same but my body is definitely smaller.  Thank you autography.  After all the reading I have done and the more learning I do; I honestly believe that my body is currently undergoing a lot of healing.  And I will give myself the time to heal.  Because I love My Self, and I deserve to heal.  To heal not only my body, but my mind and soul.  I do believe I am heading down the right path and as I always say I am a Fabulous work in progress.

Its a FABULOUS Ride

I find myself looking at a new stage, a new bend, a new dip and climb in this roller coaster ride of living with alopecia.  I could say that this ride started back when I was 8 years old when I was first diagnosed with alopecia. But in truth I look at the real ride starting when I entered into social media and found others just like me.

When I was 8, alopecia was completely unknown to me and my family.  My mom was frantically looking to treat her little girl and that little girl not truly understanding what was happening other than one day having to put on her first wig.  And that ride was short even with all its hairpin turns. . She went on that ride facing bullying and a new identity even if it was short term.

When her hair grew back it was a relief to all.  Thinking it was a bad dream and not to repeat. Over the years occasionally finding that odd bald patch but was easily covered for no one to notice.  Keeping each patch a secret.

Enter into adulthood and once again the dirty little secret was poking thru; like all secrets eventually not being able to hide.  I was seeing a dermatologist every 6 weeks, receiving painful injections into my scalp. I was trying everything; lotions and potions to regrow my hair.  My hair that once again was going to desert me. Hiding under hats and scarves until it was time to get a wig.  

My story of the day I shaved my head on the below link

http://baldnfabulous.blogspot.com/2013/03/the-day-i-shaved-my-head.html

It was during this painful period that I first step into the arena of social media.  And what a world size arena that was. I found others just like me, that were not only going thru exactly what I was going thru but also those that have experienced other sides and other stories with alopecia.    Finally I was NOT ALONE on this alopecia ride.  

As in any ride it has its FABULOUS moments and the moments that scare you to wanting to get off.  I jumped on that ride and went for a wild spin. I bravely shook off the binds of fear and along with it any head covering I was wearing.  I was a fearless BALD AND FABULOUS woman. I spoke out in my community, giving knowledge and support to anyone that would hear me. I was not going to let my lack of hair stop me, and I was certainly telling the world that.

My interview with CTV Consumer Reports on Alopecia Awareness link below

https://www.youtube.com/watch?v=RrOBp4GMuQc

My interview and article with Horses All, read it here 
https://www.facebook.com/BaldnFabulous/photos/a.385875251424011/481215548556647/?type=3&theater

I was also going to be a BALD BRIDE in a new country as I made my way to a new life in Australia.  And I was determined to be that FABULOUS BALD BRIDE. And it was in this new world, new life that I experienced something I hadn’t given much thought of since becoming bald…. Regrowth! What?!?!  Before my wedding I was sprouting patchy hair all over. I was upset and angry with the regrowth, because I had finally gotten to a point where I accepted and loved who I was as a bald woman. I didn’t want this.  And now another bend on the ride, after only a few months this regrowth was to slow down.

Today I rarely give my baldness a second thought; It is just a part of who I am. Alopecia has changed my life radically; things that use to bother me …don’t anymore.  I see the world differently. I don’t hide who I am; and I definitely don’t hide my baldness. But I also don’t give it much thought to cover up or not.  If Im cold yes I will put something on my head, no different than putting on a jacket. Here in sunny Perth, Australia I always make sure sunscreen is part of my skin regimen no different than the rest of my skin.

I don’t speak out much about awareness or support as I once did.  I don’t spend nearly as much time on social media talking and discussing Alopecia.  I live my life as I want without feeling as I need to broadcast ALOPECIA. But if the subject arises I don’t miss a beat.  I don’t know what is coming around the next bend, a climb or a dip; but one thing I do know is that I still consider myself and always will; be  BALD AND FABULOUS !

Just A Bump In The Road

One year ago today I went for my medical for my Australia visa; not only was this day much awaited and anticipated but the course of the day was anxiety filled and crazy.

I have waited to get the go ahead to take my medical for months and I knew that this was one of the final stages that I had to do for my PMV (prospective marriage visa); the other being my police clearance.  I had carefully booked my appointments for this day, scheduling it around my work schedule.  I had everything mapped out and planned; that was until my jeep decided it needed to go in for service.  I brought it in 2 days before I had to make the 3.5 hour trip to the approved visa panel doctor; it was later that day that I got the call from the shop that the parts needed were going to take an extra day to come in; therefore leaving me car-less for my trip.  This was not an appointment that I could just reschedule as I had waited months to get this one; so this left me having to get a rental.

The morning that I left for my appointment it was pouring down, so much so that when I walked into my kitchen to get a coffee there was a puddle on the floor from a leak in the ceiling.  So this was the way that my day was going to begin; a ceiling leak, driving 3.5 hours in a downpour in a rental car.   So after I got ready to leave and after telling my landlord about the leak, I headed down the highway, barely able to see the road in front of me. 

While on my drive down I got the call from the mechanic telling me about my jeep, it seems that there was more going on with it; and it was going to cost me royally.  I felt my anxiety rise with each mile I covered and my temper going with it.  I was losing control of my emotions and thoughts, to me at that precise moment the world was coming to an end; how the hell was I going to afford all this?  The medical, the rental car, the repairs to my jeep and the potential damage to my home; I seriously thought that I would come home and see the ceiling on the floor; as ludicrous as this sounds now.  I even called my mom and my fiancé to rage out my frustrations; causing them hurt in the process and feeling frustrated with me.

And my day was getting even better, as I got into the city and was trying to find my way around, the exit I needed off the highway had an accident at the ramp; therefore I was stuck in traffic and when I finally got through the traffic and made my way to the doctor’s office it was to find that I was in the middle of Chinatown at lunchtime.  There was no parking to be found and I had to walk in the rain blocks away from where I needed to go.  The doctor’s office was located in a mall that just so happened to be closed and locked for a lunch break; which had me sit outside the office in the halls of the mall, with passer-bys and children screaming.  By this point I was done, I was ready to call the whole thing off and go home, I was beyond frustrated.  And when I finally got into see this special panel doctor to approve my medical for my visa, I was insulted further.  It was the first time in my life that a doctor actually said to me that I was “FAT”.  Yes I know that I am, and I have had doctors mention that I should start a weight loss program, it is something that I have had issues with my entire life, but to be told that I am fat by a professional.  That was it, that was the final straw for me that day; I had to pay $300 for this treatment.

And I wasn’t even done for the day yet, I was then on my way to the next appointment for the x-rays that was also needed for this visa medical.  A lot of hoop jumping for one little piece of paper to allow me into a country that I had already visited.  It was at the next office that I found out that the third part of the medical would need to be done at yet another office and which they only do by appointments.  It was for my blood work; the receptionist there said that I may get lucky on a walk in and since I was out already and it was nearby that I decided to try it.  Besides if I decided to go back to my own doctor for the blood work, it would take 2 weeks for the tests to get back to the panel doctor and then sent to immigration.  At this point what did I have to lose?  When I got to the lab the receptionist there said that they were closing shortly and for visa medicals the blood work needed to be done by appointment only.  I guess it was the look on my face and despair I felt that had the receptionist take pity on me; she said that since it was currently quiet that she will slip me in.  That was when all the frustrations of the day finally burst through my eyes and I started crying, I couldn’t believe that I had finally caught a break in the day.  The sun had finally come out. 

Now was the time that I had long awaited, time to go home, to make the long drive home, made twice as long since I was now leaving during rush hour traffic which came with accidents at almost every exit that I needed to take to get on the highway.  Looking at the time I knew that I was not going to get the rental car back before they close for the day.  I made the call to find if they had an after-hours drop, which I was informed that they did BUT it would still cost me an extra day rental since the drop wouldn’t be recorded til the next day.  GREAT …WONDERFUL …. Another charge to an already expensive day.  I did finally make it home and to no damage to my home and everything did dry up. 

What started as a day that I believe was the worse day, as a day where I believed the world hated me and karma was definitely not on my side.  Today I look back at it that it was just a bump in this journey to get me where I am today.  Here with my husband, loving and living in Australia.  Was it worth it?  Yes because I’m where I belong.  Did this experience teach me anything?  Most definitely, I do survive and get through anything that sets up roadblocks in my life.  And it was this day too that taught me that overreacting and getting angry and frustrated and screaming and hurting those that I love with my frustrated words doesn’t change the things that are actually happening but it does impact and hurts the people around me and most importantly it impacts and hurts myself.

Wishes Do Come True

I have been living in Australia for a month now, and it still seems a bit surreal.  Surreal being that after all these years of thinking and wishing, I am finally in the same time zone, same city, under the same roof with the man that I love. 

Seven years ago with a chance meeting on an online poker room, I will be marrying this man this year.  All those years ago with no thought of love much less marriage, we met and became fast friends, sharing our stories and pictures, not even meeting until 2 years ago.  This moment now has all I have been thinking about for years and now being here I couldn’t be happier.  I feel relaxed for the first time in a long time; minus a few homesickness moments. 

This has been a long and trying process; not knowing if and when it would happen.  And dealing with all the stresses that not only goes along with a long distant relationship but the unneeded, unwanted and non necessary crap that I was dealing with from my job at the time.  This was definitely the time for me to do something, make a change and this was the perfect change.  I filed for my visa after my fiance came and visited me in Canada and it took 11 stressful sleepless months for it to be finally approved.  Secretly planning my big move, not wanting the world; minus family and friends; to know that I was moving to be with my fiancé.  Making the appointments needed for the visa process, traveling at times long distances to make the appointments; turned out that the panel doctor for the medical portion was outside my city.  And while worrying and stressing over the completion of my visa, I was also working on the visa process of moving my dog.  Trying to juggle both our moves, so we can leave about the same time only added to everything. 

Then the big day happened, while talking to my fiance in the morning of October 9 I got the call from the embassy.  They wanted an exact wedding date to put on the visa.  I asked them what happens now, she replied by saying “you will be getting a confirmation email shortly”  “A What!!??”  Yes this meant I was approved!!!!!  I couldn’t believe it; especially since only 2 days prior I lost my job.  It seemed that fate was finally on my side and I could shout out to the world that I was moving to Australia to be with my fiance.  It was then that things picked up fast, and I couldn’t believe how fast.  Within a week I found out that my dog was booked, and I had my flights booked.  Then there was the packing and selling of everything that I own.  Fate kept working on my side too, I was able to pay for everything, get things sold and I was able to sell my jeep on the day that I needed to.  My dog’s flight and quarantine time went without a hitch, and she landed in Australia the day before I got in.  My own flight went smoothly, other than the long lay over in LAX and getting a bit confused at Melbourne.  Soon I had landed in Perth, and I couldn’t wait to get my long awaited hug.  Then it was off to the RSL Christmas party; really is there any other way to start my new life in Australia than a party??? 

We got to pick up my dog before Christmas from her quarantine stay and she looked great, she breezed through her travels well and even one of the check in emails from quarantine said the she was doing well and was super friendly.  I knew they wouldn’t be able to resist her charm LOL.  My fiance and I had our little family for Christmas, just as I had hoped.

And now here it is, one month later, looking back on all the hard work, the sleepless nights, the anxiety attacks, and tears, ……was it worth it? 

I couldn’t be happier where my life has taken me or correction where I have taken my life.  Because I worked to make this happen, I wanted and wished for this and whether fate gave it a good shove in that direction, I am still driving my life and I am right where I want and need to be.  For the first time in a very long time I truly feel like I’m home.

And now for the wedding planning; and the adventures of our shared life together. 

No Its not Cancer it's Alopecia

I consider myself blessed, yes blessed.  Some of you after reading this might not agree; but looking at it in a different perspective you can see what I mean.  I have alopecia universalis; this means that I have an autoimmune disease that has robbed me of my hair.  And choosing to live my life as a “fabulous” bald woman without head covering, a lot of times it is assumed that I have cancer and going through chemotherapy.  A lot of alopecians hate this assumption and there were days where I too thought this.  But lately my thoughts on this have changed. 

I look at it from another perspective, most people that come up to me asking if I’m going through cancer treatments want to relate and share their stories.  They are entrusting me with their story, hoping that I can relate.  Well the truth of that is; No I can’t relate to fighting for my survival with a horrible disease.  But I can listen, I can sympathise (even if I can’t empathise) and the one thing I have learned in my own alopecia journey is that having someone to listen to you, that might be able to relate, to understand..... Is HUGE.  And with listening and sympathising comes an even bigger responsibility to treat their story with respect and dignity.  Just like I wanted and still want my story to be treated as such. 

Working in a customer service oriented business I get the chance to frequently mingle with the guests.  And every once in a while I meet a guest that impacts me.  Like today; I had a guest ask me if I was going through cancer treatments and if that was why I was bald.  When I responded “No its Alopecia” He was curious enough to ask me about what that was.  When I finished explaining what the disease is, he told me that his daughter had leukemia.  She survived her battle and went on to live a strong life.  In fact, as her father related to me, later when she remission for a number of years she met a man and decided to get married but only after the doctor gave her the “cancer is gone” diagnosis.  She and her fiancé got married in Las Vegas.  I thanked him for sharing this story and congratulated them all.  This father was so proud of his daughter and all that she went through that he wanted to share her story and her victory and I was the opening that he needed to do just that. 

Last week I was also given the opportunity to listen to another’s story.  And this is a story that greatly affected me and still does.  This senior gentleman had come up to me and kindly asked if I was going through treatments.  He told me that he is about to start treatments and even though he went to a support group of other cancer fighters, he couldn’t bring himself to ask all the questions he had.  But he did ask me.  I answered what I could, but also told him never be shy or nervous to ask questions. 

This is where I have changed my perspective on these matters.  We all look to someone that can possibly relate to our own journey.  And with a journey such as cancer, or for that matter any journey that changes you,  we all want that “I’m not alone” feeling, and connection.  We want to reach out and “pay it forward” To help others, to be there like others have been for us, to impact and touch others.  It’s a small community of those that have fought, struggled and battled our way here.  Either for our lives literally or figuratively and we want to pass on that message of “You are not in this alone” If we allow it, it changes us at our soul, our essence of who we are. ”  When I told that senior gentleman to never be shy or nervous to ask questions, because your questions will not only give you the answers you crave but by answering those questions, by opening up and sharing their story it’s just as healing to them as it is to you.

 Why am I honoured to hear these stories?  Because I have no hair?  Because they recognise a similar battle?  Whatever the reason I feel blessed that I have been included to be a part of the story.  To leave my footprint.  To be able to say “Its ok, you are not alone.”

My Year of Yoga - April

This was suppose to be a dedicated journey of this new year's resolution of doing yoga every day for one year.  Well I have kinda failed in staying up to date on my progress.  As I have stated before, I havent been exactly practicing a yoga workout daily, and I cant say that I have been daily in the practice of yoga of the mind, and spirit;  especially this past month. 
And this is a great mistake for me; for I have learned one important thing about yoga.....and that is that yoga gives me the peace and calmness I crave.  After every practice I feel better, even after one of the worse days I experience, 30 minutes of yoga and I feel like I can take on the world.
So why is it that this past month I have found I get home and the last thing I want to do is roll out my mat.  I get home and plop myself on the couch and zone out.  Well the answer to that is pretty simple;  the stress and anxiety I have been experiencing lately.  And being honest with myself ... old habits, no matter how hard you try to make the change, die hard.  But try hard I will continue to do.  If yoga gives me calmness and lowers my stress levels and I come home from work feeling on edge and high on anxiety then instead of zoning out on the couch I should be rolling out my mat.  I know this, now I have to be more dedicated in doing just that.  "Do or Do Not, there is no try"

My Year of Yoga - January

Having completed my first month in this journey of one year of yoga I have come to learn a few things about yoga and myself.  Most importantly what I am capable of.  I have learned that physically I have much more strength in me than I thought but also I have many weakness. I have felt myself getting stronger physically as well as mentally; but one of my weakness and consequently fear is holding plank.  Since the first time I ever tried holding plank or even doing a push up, my arms would shake and I would say to myself, Argghh I HATE PLANK!  I know now that it isn't that I hate plank (altho I still say I hate plank) but I feared that I couldn't hold the position for longer than 10 seconds. I have learned that yoga is not just about the physical aspect but also the mental aspects; if I tell myself I cant do a certain pose then what I am doing is setting myself up for failure of that pose; whether I can do the full pose or not.  I have always picked up on that yoga is a breathing exercise, allowing the breath play the most important role in the movements you drive your body through.  But its more than that too;  the breath fuels those movements and with the right breath and the right concentration of the breath the movements have a better flow.
The biggest thing I  have learned, especially tonight, and this most likely has to do with all that is going around me in my life currently, is that I still hold fear in my heart.  A deep seated fear, one that I thought for the most part I have worked through with everything that has gone on.  But when the instructor on my dvd said tonight, trust in the path your life is going, to focus on the one aspect of your life in which you wish to cultivate and let all other thoughts go.  It really brought back to light that I fear the unknown, I fear those other thoughts and what others think of me.  And I will admit, even though I fear what would be thought of me for saying this, but hearing that tonight, I wept my release as I came to realize that I do fear.
But maybe its ok to have that fear.  I have never been one to back down over something that scares me or makes me nervous.  And the fear of what others think of me and that fear of the unknown will be something that I will have to acknowledge more in myself.  After all this is me, my life, my choices and my path.  No one can walk this path but me.
Yoga has allowed me feel those emotions, acknowledge and give the much needed release; as I inhale thinking "LET" and exhale "GO"
Namaste 

My Year of Yoga

January 5, 2015

This is me. Im a 39 year old overweight woman that has been living with alopecia since she was 8 years old.  I have faced bullying in those early years of having alopecia, learning to hide the bald spots in my teenage years through to the day when I was 35 that I finally stopped and shaved it off. In hiding my alopecia I learned how to put up many walls in order not to be hurt.  In doing so I didn't and still don’t have many people that I would consider close friends.  Im in a long term, long distance relationship with a man whom I love completely and have known for nearly 6 years.  He also lives literally on the other side of the world from me. We met playing poker one night on Facebook, and fast became friends.  We have met in person twice and now planning a future and a wedding together.  I still battle my weight and try to exercise and eat healthy daily.  Or course I am human with many flaws so I do fail at the healthy choices occasionally.  I have given myself a new challenge this year, part of my new year’s resolution, that being “my year of yoga”.  This being the fifth day of January, I have missed my practice one day.  Being so early on in my resolution I took this pretty hard at first but then I decided that I was allowed to miss the occasional day so long as I stayed true and honest to the practice itself.  Meaning that when I did a yoga session I did it true and not just go through the motions to get it done.  I have been practising yoga on and off for about a year now and find it rewarding both physically and mentally.  In that time I have found changes already in myself; I stand taller, even with the extra weight I carry I see changes in my body...I am leaner and stronger.  Other changes also show that I don’t hold on to my anger or frustrations as long as I use to.  And believe me I use to hold on to them for a long time.  I still get angry or frustrated or emotional, after all I am female. But when I come home from a bad day and I do some yoga I become much more relaxed.

 This here will be the account of what I learn about yoga, meditation, myself and others.  Enjoy 

New Year's Resolutions

It will soon be a new year meaning symbolically a fresh new start.  I, like so many others come into the new year with a New Year's Resolution.  And this year will be no different.
When I started this blog my goal was to raise awareness about alopecia with my own journey.  And its still my intention to raise awareness for this disease.  But for me personally, alopecia, this passed year has definitely taken a back burner put that on low, stance.  There has been so many other things going on that I dont have time to fret about my lack of hair and what others may think about it.  And I think in doing so I believe I have put to peace many of my ghosts concerning this disease and about living as a bald woman.  And if I can be so bold to say maybe, possibly in allowing my soul to heal some I have opened the door for my body to heal.... meaning I have seen regrowth in the first time in 4 years.  Not much but some.
This passed year has seen me traveling to Australia to meet my long term long distance relationship, and become engaged, to having my fiance visit me here in Canada, to now planning the next stages of our future together.  And to answer whether I would be a bald bride or cover up.  I have full intentions to follow my hearts desire that day; most likely being bald and not giving a hoot.
But to get back on topic.... New Year's Resolutions.  I have made a couple.  Firstly to continue living my life by being happy and not giving a whoop what people think, and making healthy life changes.  Starting with .... I resolve to do at least 10 minutes each day of a yoga practice. 
This passed year I wanted to see myself be healthier and fitter; and along with other sorts of workouts, I have come to find yoga not only physically rewarding but mentally and spiritually. 
So with this resolution in writing here, I will now track my year of yoga.  Stay tuned to my year of yoga and more about my becoming a bride.
Cheers