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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Hair Today Gone Tomorrow

Hair Today Gone Tomorrow

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After seven years with zero hair, all of my hair came back in and it was awesome!!!  It was so thick and had an adorable curl to it too.  Well it fell out this week!  Damn!  I knew as my dose of prednisone decreased that it would probably start to fall out again but I was really hoping to have one summer with hair.  I wanted to be able to swim in the pool again without having to hang onto a scratchy, hot wig on my head.  I knew it would probably not last and I was certain that I would have no reaction when it started to fall out again, yet as the handfuls of hair started coming out I found myself sitting on the bathroom floor crying my heart out like I had seven years ago.  It completely caught me by surprise how heartbroken I was.   I guess a little part of my was hopeful that my immune system would back off of my hair and let me keep it at least for a while.  Yet for five glorious months I had hair again!  I enjoyed washing it and brushing it.  I coloured it, gelled it and had all sorts of fun with it.  It was a nice little gift amid all of the nausea and swelling that the medication caused.  I realized that it was falling out while I was reading my book.  My head was bent over reading the pages when suddenly the pages were covered with hair.  I brushed it off and looked around to see where the hair was coming from when I suddenly realized it was falling off of my head.  I put my hand up to run my fingers through my hair and my hands came away just covered in hair.  It was so disappointing.  I am now at that horribly awkward stage where the hair has fallen out in huge patches so I am going to have no choice but to shave the rest of it off as it looks just terrible.  It is such a pain to shave the rest of it and I wish that it would just get it over with and all fall out at one time.  Now that the medication is going down I am feeling much better so I guess that will have to be the pay off.

 

I am now down to only 20 mg of Prednisone, along with the IVIGs and the other immunosuppressants that I am taking which is really, really amazing.  My doctor had thought that I would not be able to taper so quickly off of the steroids but the IVIG infusions have been a miracle treatment for me and have allowed me to bring the dose down really quickly.  A lot of the side effects of the Prednisone are disappearing which is making me feel so much better.  My strength is returning.  I am able to do so many things that would have been impossible for me a few months ago.  My family cheers me on with every little success like I am a child learning how to do everything all over again.  Tonight I opened a jar of spaghetti sauce and you would have thought I was Rocky winning the big fight.  I danced all over the kitchen with that jar in the air and my family cheered.  Now they were probably cheering because they will no longer have to open it for me but I appreciate their enthusiasm.

 

This winter has been full of changes.  I sold my daycare centre and now my parents have decided to sell their bungalow and move into an apartment so they can enjoy their retirement without having to take care of a house and all of the chores that go along with it.  This is a great move for them but meant that they had to sell their house.  So in came my brother and his real estate team to stage and prepare the house for sale.  We were all there last weekend for a Birthday lunch when they found out that someone was going to come and see the house after dinner.  So we all raced around to get the house all set up properly.  My brother shouted to my mom to light a nice smelling candle to cover up the pizza smell from our lunch.  As I was cleaning, my nose was suddenly assaulted by this horrible smell.  It smelt like a combination of Vick’s vapour rub and some sort of muscle rub or ointment.  The smell was so strong that it was as though the bottle of vapour rub had been jammed up my nose.  Clearly others smelt it too as my brother yelled “MOMMMMM!  What the heck is that!!!!  I said light a nice smelling candle like one that smells like cookies or banana bread!!!  What is that???”  My mom had plugged in some sort of electric aroma therapy machine that clearly was meant to clear you out if you had a cold or pneumonia.  She started laughing and unplugged the machine but the damage was done!  Now we were all running around the house whipping open windows in the freezing cold weather and waving the air desperately trying to get this horrible smell out of the house so that people coming in a few minutes didn’t think that someone who lived there was sick with the plague.   I can just imagine what everyone walking by the house must have thought as they saw us all jumping around and waving things in front of the open windows while my brother was shouting “Everyone fart right now and try to cover up this smell!!!!!”  Not a great thing to yell out!  Hilarious, but not a good idea as his niece and nephews are young enough to take him literally and we now had a house full of children trying to pass gas so hard that I was sure that someone was going to fill their pants.  I knew at this point it was time to get the kids out of there before disaster struck so we left my poor parents amid the chaos and headed for home.  They must have done a great job with their showings though because my brother’s team managed to sell their house in less than a week!  Amazing!  I am sure that there will be tons of hilarious stories to blog about once mom and dad have moved into the retirement apartment so I should probably thank my parents now for the material.

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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

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