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

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


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

BaldnFabulous Turns Four Years Old and What I have Learned So Far

It is truly unbelievable that I'm coming into my fourth year of living as an openly bald woman.  From the once shy and hiding woman that was terrified to let anyone know that I had alopecia and fighting to keep my hair, terrified that I may indeed be bald. To the day I became “Bald and Fabulous”. 
Much has happened during this time, many stumbles, to downright falling flat on my face, to successes to failures, to learning about me and learning about the people I come into contact with.
I wish I could say it was easy or even enjoyable; but that would be a lie.  But the one thing I can say is that it has been one hell of a roller coaster and a ride that I wouldn't have changed for anything.  And as I continue on this journey I will always try to stay authentically myself.  I will own my mistakes and failures as long with my successes and triumphs. 
My one and only goal when I started on this journey was to aide in the awareness of this disease as well as wishing to help those that are feeling the same struggles that I did and still do.  To let you know that you are not alone. 
When I first step into the alopecia arena, I was shocked to know that there were many others that also had this disease; because for so long I truly did feel as I was the only one.  In all the years of going to the doctor’s office for those painful treatments, not once did I visually see another person struggling with hair loss.  So when I stepped into the social media world; actually more liked leaped in without looking; I was greeted with so many others that I “friend” anyone that shared my story.  It wasn't till later that I learned that this was wrong for me.  There was many that even though they also had alopecia, I shared nothing else with them, we would have completely different values, thoughts and interests.  There was also some that didn't even have alopecia but lived bald or said they did for completely different reasons.  I made mistakes those first few years, and forgot to be authentic to myself.
Also in these last four years, like any other four year old, I have grown and changed, and some of my own thoughts have changed along with them.  Even though my goal still remains the same; raising awareness and helping others; I don’t feel the need to shout it out from the roof tops any more.  I thought I wanted to campaign for awareness, but to do that some things in my life would not receive the attention that they deserved; other things that I consider far more important to me.  So I changed and reset my priorities.  And like growth and change, ever fluid, I'm sure as some point in my life I will be resetting my priorities again. 

I guess what I'm saying in all this is that; just because you share the same adversity with someone else does not necessary make them “friend”.  And change and growth is just that- CHANGE.  Ever fluid, ever moving, always constant.  That’s life after all.  So don’t be hard on yourself for finding yourself at a crossroads again, don’t feel like you are not being true, because honestly I do believe to be authentically yourself always, is to accept that you may change your mind and change your values, and so long as it is what you feel is right for yourself.  That “yourself” that speaks to your conscience. 

How to recognise true love

Over two years ago, before my fiancé and I ever declared our feelings for one another he once shared with me this thoughtful passage from Bob Marley.  It was during this time that my feelings for my now fiancé were already strong even though they were not announced and after reading this passage I knew in the deepest part of my soul this is how I felt for him.
I share this passage with you all now so that you also recognise that person in your life for what they mean to you.  Or if you have not found them yet that you will recognise them when they appear.
I never thought growing up that I would find that one, I always figured I was too damaged or have too much baggage for someone to want to live with.  But its true ..... there is that someone special out there for everyone.  You just have to be patient, trust, live your life as you want it and take care of yourself.  After all, if you don't care for yourself, love yourself; how is anyone else expected too.
Enjoy this passage

"Only once in your life, I truly believe, you find someone who can completely turn your world around. You tell them things that you've never shared with another soul and they absorb everything you say and actually want to hear more. You share hopes for the future, dreams that will never come true, goals that were never achieved and the many disappointments life has thrown at you. When something wonderful happens, you can't wait to tell them about it, knowing they will share in your excitement. They are not embarrassed to cry with you when you are hurting or laugh with you when you make a fool of yourself. Never do they hurt your feelings or make you feel like you are not good enough, but rather they build you up and show you the things about yourself that make you special and even beautiful. There is never any pressure, jealousy or competition but only a quiet calmness when they are around. You can be yourself and not worry about what they will think of you because they love you for who you are. The things that seem insignificant to most people such as a note, song or walk become invaluable treasures kept safe in your heart to cherish forever. Memories of your childhood come back and are so clear and vivid it's like being young again. Colours seem brighter and more brilliant. Laughter seems part of daily life where before it was infrequent or didn't exist at all. A phone call or two during the day helps to get you through a long day's work and always brings a smile to your face. In their presence, there's no need for continuous conversation, but you find you're quite content in just having them nearby. Things that never interested you before become fascinating because you know they are important to this person who is so special to you. You think of this person on every occasion and in everything you do. Simple things bring them to mind like a pale blue sky, gentle wind or even a storm cloud on the horizon. You open your heart knowing that there's a chance it may be broken one day and in opening your heart, you experience a love and joy that you never dreamed possible. You find that being vulnerable is the only way to allow your heart to feel true pleasure that's so real it scares you. You find strength in knowing you have a true friend and possibly a soul mate who will remain loyal to the end. Life seems completely different, exciting and worthwhile. Your only hope and security is in knowing that they are a part of your life."

― Bob Marley

LDR Manual


Long distance relationships... there should be a manual on how to survive them.  This has to be the one single handily hardest thing that I have gone through.  And I have gone through alot in my life.  I have finally found love, experienced love, to know that I am loved and now I feel as if I'm in a holding pattern til I can have it again.  On top of it all there is my fiancé’s feelings in all this too.  A relationship regardless if there is distance or not still requires you to acknowledge and do your best as a partnership.  When I'm feeling sad or frustrated or even angry about things, I must remember that it will also reflect on my fiancé’s feelings. 
How does one get through this, especially knowing that the distance is great and it will take much time to close that distance.  As in my case in this overseas relationship.  It’s not like I can just pack an U Haul and go on my merry way.
Honesty is the best policy.  Always has been and always will be.  Sharing eachother’s thoughts but being mindful of how they can be interpret.  I find it so frustrating when I'm sharing the thoughts going on inside my head, and being asked “What do you want to do about it?”  There is nothing that can currently be done.  Nothing more than what we are already doing; Working towards that common goal of being together.  Just because I would want it today doesn't necessary mean that it will happen that way.  And it’s that what causes my biggest grief, sadness and frustrations.  If I could wave a magic wane I would make it so.   
Not being hard on myself or my fiancé.  We are doing the best that we can do.  Even if we both want more and I most certainly do, taking it out on him is not going to fix it.  I have never been known to be the most patient of people.   And when I do decide I want to do something or want something it’s now not later.  As my mom always said “shit or get off the pot.”  One thing that helps in this is making a date.  It gives me a final point, a goal to work towards. 
And trust; the biggest of them all.  Loving my fiancé and trusting him to totally let down my guard was something that I learned to do in the process of our relationship taking to fruit.  My past experiences never let me fully let down my guard before and now I have.  It’s not just the letting down my guard and trusting him, but its remaining open to trust him always.  And entrust that he trusts me.  Distance only adds to the insecurities of everything.  To trust is crucial.
At the end of the day it all boils down to LOVE.  Loving this man that anything is worth going through to have him in my life.  Because I honestly wouldn't want it any other way.  I love him dearly.  And look forward to a future where we are together forever.

These are my reminders, my how to manual on surviving a long distance relationship.