About Me

A hilarious view of life with multiple autoimmune disease and chronic illness. Lupus, Dermatomyositis, Myositis, Alopecia, Raynaud's Syndrome, Sjogren's Disease, Depression & Anxiety. I have it all and have learned to not only accept what come my way but to see the humour in all that life has to offer. If you know someone struggling with chronic illness please refer them to this blog. My hope is to brighten the days of those who need it the most and give hope that there is still a beautiful life to live even if it may be a little bit broken!

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Losing Your Hair Just Sucks!

Losing Your Hair Just Sucks!

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Losing all of your hair sucks!  There is just no way to flip it to make it positive.  It was one of the single worst parts of developing autoimmune diseases and it took more of an emotional toll on me than many of the other challenges I would face.  Even the pain of inflamed muscles and joints was right up there with the heart break of losing my hair.  Maybe that makes me vain, but so be it.  I loved my hair and I miss it every single day.  Have I come to accept the wigs and living without facial or body hair?  Absolutely, but I still wish that I had my own hair again.

For me my hair loss started when I was only 16 years old.  I was alone at the hair dressers and she was cutting my hair when she gasped and said “Did you know that you have a bald spot?”  I didn’t.  She held up a mirror and showed me a spot about the size of a loonie on the side of my head that was completely bald.  I instantly could not breathe.  Being only 16, I assumed that I had some horrible disease and was going to die.  I tried to just be brave while she finished cutting my hair but by the time she finished I was pretty much sobbing.  The other hairdressers all hugged me and made sure I was calmed down before I went home.  When I showed my parents, they booked me into the doctors but my mom told me that she had once lost some hair when she was very stressed out at school and I felt a little better because I was a pretty anxious teen.  The doctor explained that I had alopecia which means that my immune system was attacking my hair.  She referred me to a dermatologist and explained that I may or may not lose all of my hair.  All of my hair??????  I almost died when she said that.  There is not much that you can say to a teenage girl that is worse than you are going to be bald.  The dermatologist did not have much better news.  I remember her examining my face, sighing and saying “shoot, and you have such pretty hair and long eye lashes” in a sad voice.  She explained that there wasn’t much they could do except give me injections of steroids into my scalp to try to get the hair to grow back.  I was willing to give it a try and each month I would drag myself into the dermatologist’s office, where I would dish out my 15.00 to get 50 injections of steroids into whatever new bald spot I had developed.  It frigging hurt too.  Like bee stings but I could take anything to get my hair back.  The injections worked for a quite a few years and I was able to stay on top of the bald spots for the most part although I could always count on sporting a few bald spots somewhere.

Covering up the bald spots became a mission in my teenage and young adult years.  I tried everything.  Different hair styles; luckily it was the 90’s and big hair was in so I could tease and hair spray a nice giant head of helmet hair over top of those spots.  Then one day I discovered on a cheap TV infomercial spray on hair in a can.  You know the stuff that looks like spray paint?  I had to have it!!!  My amazing parents were willing to pretty much do anything to make me feel better about this so off they drove to the states to hunt down cans of spray on hair.  A few times a year they would drive to Watertown where they would then pirate cases of the stuff across the border.  The crossing guards probably thought they were for my dad, not knowing that he was secretly sneaking the stuff into the country for his teenage daughter.  The spray worked pretty well on smaller bald spots.  It didn’t work like the ads said it would and did not look like hair at all but it did paint my scalp so that it was the same colour as my hair and so that there was not a glowing, white bald spot peeking out.  The spray was really messy though and it would wear off part way through the day.  My pillow cases were always dyed brown, my towels were all brown and my bath tub had a permanent brown ring around it that was almost impossible to scrub off and lord help me if it rained or it was hot outside and I began to sweat.  Gym class and rainy days were my nightmare.  Now they were a nightmare for all teens in the 90’s who had their hair perfectly Aqua Netted into giant beehives but I not only had to contend with the Aqua Net turning to plastic in the rain but I would also have a stream of muddy spray paint that would suddenly pour down my forehead or the back of my neck staining my clothes.  Nothing like batting your eyes at your boyfriend only to have a stream of brownish paint suddenly spurt from your hair down your forehead, leaving you with a glowing bald spot.  I remember one time riding to school on the public bus after being in the rain.  I could feel the spray dripping down my neck onto my shirt and I didn’t get off the bus but took it right back home to change my clothes.  I then returned to school where I was given a detention.  I can’t tell you how many bad hair day detentions I served. My tardiness became such an issue that by the twelfth grade the school had given up and my homeroom was in the vice principal’s office where I would let them know that I had arrived and was on time to make it to my first class.  They thought I was just a rebellious teen because I never once told them about the bald spots being too embarrassed.  I could have saved myself a whole lot of time sitting in detention but my vanity at the time was way more important than sitting in a stupid detention hall.  So bring on the punishment, I didn’t care as long as my hair looked good and I wasn’t covered in brown paint.  I made detention cool anyway!

Before my daughter was born I fell and broke my leg very badly, needing some surgeries.  After giving birth I had to have another surgery on my leg and this, combined with my heavy work schedule while caring for a five year old, three year old and newborn, as there is no maternity leave when you own your own company, was too much for my body to take and my immune system shot into overdrive.  That is when I began developing symptoms of Lupus, Raynaud’s Syndrome, and Sjogren’s Disease.  I was super sick and my hair began falling out rapidly along with my finger nails, toe nails, and a tooth.  I visited the dermatologist more and more often begging for more and more shots but nothing they did could keep up with this hair loss and for the first time in my life I had to think about getting a wig.  I thought it would look horrible and I put it off for a while, just tying a bandanna on my head hoping I could pull off the pirate look for some time.  You really can’t pull off the pirate look at public events and when going out so I became a bit of a home body turning down most social events because I couldn’t dream of going with half of my hair gone.  Finally I went to the wig specialist in town to purchase my first wig.  I took my best friend with me for moral support and thank god for her because if she was not there to make me laugh I would have ran out of there within the first five minutes.  They tried all sorts of wigs on me that looked terrible!!!  Whenever the hairdresser would leave the room, my best friend would try them on too and we would air band that we were 80’s heavy metal rock stars because that is what they looked like.  After many bad wigs went on my head, it stopped being really funny and even my friend was tearing up on my behalf.  Then they found me a partial wig that was a good match for my hair and would clip into the hair that I had left, blending and covering up the bald spots.  Something about it only being a partial wig made me feel better since it meant that I did not yet need a full wig.  That was a big mistake as within a few short months I would need a full wig anyway, but I was so hopeful then that my hair would stop falling out and would grow back.  I have never seen that hair again.  Then she gave me the price; $1500.00 for this little clip on piece of real hair.  AGHHHHH!  I didn’t have that kind of money.  Our daycare franchise was still very young and my salary was smaller than most of the people I knew at the time.  So I set up a payment plan thinking that this hair piece would last a lifetime; also a myth.  I soon came to learn that human hair wigs are the only wigs that look like real hair.  They cost close to 2000.00 a piece and they only last about 5 months before they are so thin and worn out that you can see right through them.  This means that not only did I have to wear these stupid, scratchy, hot wigs but I had to dish out close to $400.00 a month to do so.  A huge financial hit for our family that we could not afford but my super hero husband said we would find the money for them because he felt so bad that I had to go through all sorts of pain, meds and chemo treatments for the Lupus and I at least could walk around with hair on my head.  They eventually found me a wig that I love and I have been getting the same one every five months for the past 7 years.

Many people have asked me why the wigs are not covered by medical benefits but they are considered cosmetic and under almost all programs the coverage you receive is about $500.00 for a lifetime, which basically covers ¼ of your first wig and no more for the rest of your life.  In the past seven years I have paid out $33,600.00 on wigs.  I actually almost fainted when I read this, no wonder we are always broke.  It is a part of chronic illness that most people do not know about.  It is a huge financial burden on any family.  The Canadian health care system is pretty great as long as you are not really sick but if you get a disease you are pretty much screwed.  There are many blood work tests that are not covered that must be paid for.  Parking at the hospitals and doctor’s offices can cost up to $100.00 a month.  You have to visit the eye doctor and have ultrasounds that are not covered to check your eyes for damage from your meds that cost about $200.00 every three months.  Eye drops to save your eyes from Sjogren’s disease are also not covered and cost about $80.00 every 3 months.  I have to visit the dental office for cleanings every three months to stop my teeth from decaying below the gum line from the Sjogren’s disease and our health care covers 9 month visits so dental expenses are about 1000 extra dollars a year and I can count on needing a root canal or a tooth pulled every other year which takes about 1500 more dollars out of pocket.  It keeps piling up and I have turned down many possible treatments simply because we just can’t afford them.  There are many, many people in the exact same situation and I am lucky that our family is able to squeak by because many are not.  Tonight I was so sad to read about the sudden death of one of the members of the dermatomyositis group that I joined.  The poor woman was very young and was petitioning the government to pay for the really expensive treatment that she needed but they turned her down as they said it was to experimental to justify the cost.  Within three months she had passed away.  Our health care system is better than most for sure but still has a way to go when it comes to dealing with those who are chronically ill and truthfully I am pretty fearful of what may come my way in the future or how my own family will make it through if I need more and more expensive treatments and I can only imagine how some other families who have far less than our family are making out.  I am blessed to be running a hugely successful business and I can barely make ends meet with all of the extras that I have to pay for so I can only imagine what situation others are in and I hope that one day my business will be an enormous success so that I can use that money to help many others.

Just when I thought it couldn’t get worse, I looked in the rear view mirror of my car a few years back and had to pull over.  There was a small spot of hair missing from my eyebrow.  I knew what that meant, that I was starting to lose my body hair but after all of these years I thought that I had dodged that bullet and it was the last thing I wanted.  Within a couple of days my entire right eyebrow was gone.  That’s right people, only one eyebrow!!!  Leaving me with one eyebrow and one missing like I had some suffered some sort of horrible Nair accident or been the victim of a horrible hazing ritual. HORROR!!!!  I started pulling my bangs down over my eyebrows to try to hide the ridiculousness of my eyebrows but there was no hiding this.  I even was at the grocery store one day when a lady loudly commented to her boyfriend, “my god, did you see what she did to her eyebrows?”  Now I have gotten stronger since those days and now I would have whipped off my wig and put her right in her spot but at that moment this was still new to me and so I just walked away and then cried the whole way home without the groceries.  When my husband asked me what happened I explained that he would have to get the groceries from now on because I only had one eyebrow.  He didn’t question it, just got the groceries.  He’s a good man.  I was actually happy when the other eyebrow finally fell off.  I should have just shaved it off but I was so hopeful that the other one would suddenly grow back and then I was worried that the one I shaved off wouldn’t grow back.  It’s a vicious cycle I tell you.  So then I spent a year with no eyebrows or eyelashes which gave me the appearance of an alien without a ton of make-up.  I was never able to draw my eyebrows on with a pencil because there were no brows to follow.  If you were even slightly off you had a weird cartoony look that looked much worse and within hours part of the eyebrows would be worn off and I wouldn’t know until I caught people staring at my brows with a perplexed look on their faces.  Fake eyelashes were also out of the question.  Fake eyelashes only work if you have eyelashes to attach them to.  When I try to stick on fake eyelashes they immediately slide into my eye ball, because they have nothing to grip onto, gluing my eyes shut, blinding me and causing my eyes to water down my face.  When my business partner and I were featured in Distinctive Women’s Magazine a professional make-up artist was able to finally get some false eyelashes on me after accidentally gluing my eyes shut not once but three times.  My eyes literally teared through the whole photo shoot and I periodically had to pry my eye lids open before shots.  I couldn’t get them off fast enough although I did like how the pictures turned out and wish that fake eye lashes were an option.

Another hazard of not having eyelashes is that everything and I mean everything ends up in your eyes.  Pieces of dust, dirt, flying finger nails, you name it they land in my eyes because I have no lashes to protect my eyes from debris in the air or flying around.  Also a problem is that I get sick a lot since I have no nose hair to protect me from germs in the air.  The only really positive part is that I no longer have to shave.  Luckily this came about just when the whole “no body hair” trend came into play so I was right up there with the fashion trends with zero body hair.  No more shaving!  That part is awesome and I do not miss the body hair at all.  My skin also feels super soft, like a baby’s, because I have absolutely no body hair getting in the way.  My husband does like this part as he doesn’t have to worry about picky winter legs poking him and can always count on hugging a super smooth and soft wife which makes up for the lack of hair on my head.  Yet I couldn’t get over the no eyebrows and eye lashes so my amazing family pooled their funds and bought me eyebrow and eyeliner tattoos for my Birthday.

I was pretty excited about getting the tattoos but also really nervous.  I mean these are permanent and one slip up and I could end up looking like some weirdo with big bushy drawn on eyebrows that do not match.  I have seen some pretty shocking mess ups on the internet and I was terrified that that may happen to me.  I also was worried that if my real eyebrows did one day grow in they would not match up with the tattoos leaving me with a double brow on both sides.  I was still very hopeful that those crazy eyebrows would come back.  So I did what I normally do when I am afraid of something and researched the hell out of it, finding the best beautician to do my tattoos.  I made the appointment and was so nervous about her messing them up that it never even crossed my mind that this was going to hurt.  WOW did it hurt.  My body for some reason never takes to freezing very well.  When I had my children the epidurals only worked for one of them, my spinal gave out in the middle of having my leg surgery and my freezing will often give out at the dentist, so it should have been no surprise when the freezing cream they put on my skin did not take until the last 5 minutes of the hour long procedure.  The brows weren’t too bad.  They just felt like my skin was being scraped and burnt but the eyeliner part was horrible.  Throughout the procedure my eyes literally exploded with tears, along with my nose which was pouring and I am pretty sure I was drooling too.  Not one of my finer moments.  My eyes kept seizing too and fluttering so she literally had to hold them open while tattooing.  I was so glad when that was over.  When it was all done she showed me the final product and my mouth dropped open.  When you get tattoos they are ten times darker than the final product because the ink and blood are on the outside.  This colour wears off over the next few weeks and she had warned me about that but when I looked in the mirror and saw two angry looking black eyebrows staring at me I almost fell through the floor.  It looked pretty bad and my eyes were already swelling up like I had been hit in the face with a fry pan.  My husband picked me up and we both said nothing all of the way home.  Once home I explained that it would lighten up and he just nodded his head and gave me a look of sympathy.  Oh god!  I had to go to a Birthday party for my friend’s twins the next day and I sported a nice pair of sunglasses to cover the swelling and most of the tattoos but I had to spread this gelly substance on them for the next two weeks so they were dark and shiny and stood out on my face like two greased up caterpillars.  I literally looked like someone drew on my face with a sharpie marker and then smeared Vaseline on top of it.  Horrible!  As the weeks went by they did fade to a really nice colour and within a month I loved my new eyebrows.  They are in need of a touch up now and I will have to wait until I can afford to do so but there is no way that I am ever going to touch up the eyeliner.  That hurt way to bad.

Now I have joined some support groups where people will often post pictures of themselves without their wigs on and I have the utmost respect for these people.  They are superheroes in my eyes.  They will go about their day with their bald heads out in all of their glory.  I am not one of those people and almost no one has ever seen me without my hair.  Only my husband and children in fact have seen me without my wig on.  I am not that brave.  It is one area where I am not strong at all.  I hide behind my wigs like they are my shields protecting me from the truth of these awful illnesses.  Maybe I’m in denial and putting it out there would be like accepting that this really has happened to me but, honestly, I just don’t like what I look like bald.  My head is ok and I have a pretty normal shaped head with no lumps or bumps but I do have major scaring on the back of my head and neck from the Dermatomyositis and Lupus rashes.  I am just not ready to have anyone see me that way.  I don’t want to look sick or different I just want to look like I looked when I was healthy.  Sometimes I feel like if I don’t look sick then I won’t feel sick and that has always been partly true for me.  On my worst days, I always make sure that I dress myself nicely, put on make-up and do my hair and then I feel better and feel like I can slap that smile on my face and face the world.  So, although I have the utmost respect of everyone who posts pictures of themselves sans hair, I won’t be doing that here.  At least not yet, I am willing to open up and share my inner most thoughts with all of you but you will have to wait for me to be braver to share my bald head.  Unless one day my wig gets blown off on a roller coaster or flies out of my convertible which there is always a good chance of happening.  So you never know, one day all of my neighbourhood peeps may get a glimpse of my bald head flying past in my convertible bug!  I bet that will get a stir on Facebook!  LOL  Welcome to my itchy, hot, expensive, beautifully broken life!  XOX


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About Me

A hilarious view of life with multiple autoimmune disease and chronic illness. Lupus, Dermatomyositis, Myositis, Alopecia, Raynaud's Syndrome, Sjogren's Disease, Depression & Anxiety. I have it all and have learned to not only accept what come my way but to see the humour in all that life has to offer. If you know someone struggling with chronic illness please refer them to this blog. My hope is to brighten the days of those who need it the most and give hope that there is still a beautiful life to live even if it may be a little bit broken!

Stay Connected