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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OMG!!! NERVE PAIN IN MY FACE!!!

OMG!!! NERVE PAIN IN MY FACE!!!

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This is how my journey with Dermatomyositis began with the above caption as the email subject that I sent to my poor brother who is an Ear, Nose and Throat surgeon in Halifax.  It was followed by the following note:

 “OMG!!!  I have nerve pain in the right side of my face.  I am going to die.  Keeps coming and going.  I may have to shoot myself.  This is not a suicide note but OMG!!! I think it may kill me.  What the Hell is this???????  Holy god, what can I take to make it stop!!!!!

HELP!!!!

Tee”

And I meant it!  I literally wanted to die.  The first jolt of nerve pain that I felt shot through my face, teeth, right eye and head, and it felt like an electrical shock of pure agony that lasted for the longest minute of my life.  It happened just as I pulled into my driveway from bringing my daughter home from soccer.  I could hear her chattering away to me but the excruciating pain was bad enough that I couldn’t speak or even breath and my eyes nose and mouth spontaneously exploded with tears, snot and drool all at the same time.  I literally thought that I was going to pee in my pants it hurt so badly.  When it subsided I went inside only to have it reoccur over and over for the next five days.  My family never had any warning that it would hit because by the time it started I wasn’t able to even speak.  One minute they would be talking to me and then realize I was silent and laying in fetal position clutching my face.  The nerve pain also showed up in my left arm and has been my constant companion now for the past three months.  I have gotten good at masking the pain so that no one would really know it is happening except that I immediately freeze when it occurs like I am in the world’s longest lasting game of “Freeze Dance.”  I will literally be walking in public and then freeze in whatever position I am in for 30 seconds to a minute.  It has drawn a couple of stares and some attention from bystanders but I just move on right afterwards leaving people wondering what the hell just happened.  I sometimes wonder how many people I have passed by and left wondering if they themselves had just suffered some sort of mental breakdown or panic attack.  Did time really just stand still and freeze? Because that lady just froze and then walked away like nothing happened at all.  I could give an explanation but the perplexed looks on their faces gives me just a little bit of enjoyment and I’ll take what I can get whenever I can get it.  My family physician prescribed me Lyrica.  I can’t honestly say that it worked but I tried one and was so stoned that I could still feel the nerve pain but really didn’t care that it was happening.  The problem is that I am a mom and I own my own company, with my two business partners.

When you run your own company and are a mom to three there are no sick days, there is no disability there is just suck it up and get it done.  The perks are that when I could no longer get myself dressed I could work from home in my pyjamas and no one was the wiser, but the work still had to be done.  My portion of the company’s work load consists of completing programming and curriculum that we ship across Canada and the world to all of our preschools and having a program planner who is stoned out like snoop dog was not going to work. Although I bet those plans would have been awesome and I am still debating taking another Lyrica and seeing what kind of awesome educational activities I come up with.  So I save the Lyrica for times when I have time to be asleep for at least 15 hours straight…  I have taken exactly two Lyrica in the past two months.; who the hell has time to sleep for 15 hours?  Better to just keep going, freezing and baffling bystanders while getting the job done.

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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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