One morning I woke up with an ache in the arch of my foot. I thought at the time I may have pulled a muscle but how was this possible? Well, within a couple of weeks my feet, ankles and knees were swollen like balloons and then shortly after the inflammation crept into my hips and the pain was just as intense as wild fire. It was October 1988.
From there the pain and swelling went into my wrists, elbows and hands. By now I'd been to the doctor who sent me to a Rheumatologist. By the time I finally saw this doctor I’d had numerous blood tests, etc, trying to figure out what was going on. I hobbled into this doctor's office and he proceeded to lay out a drug treatment plan. Well, taking drugs of any sort was not high on my list of wants no matter how much pain I was in. I told him I wanted another option. I was 24 years old and he said that either way drugs or no drugs I had to get used to the fact that I would permanently be in a wheelchair by the time I was 30 years old. I looked at him, lifted myself out of the chair, replied with a 'Fu.. You!' and hobbled out the door. I then found Dr. Arthur Bookman, the kindest, sweetest Rheumatologist at Toronto Western Hospital. I did end up taking the drugs but Dr. Bookman was always very considerate of my aversion to them and I respected that.
So, from 1988 when I was diagnosed with what is called Serum Negative Rheumatoid Arthritis, which means it never showed up in my bloodwork (hmmm....???) till probably 1993 I struggled with relapses sometimes leaving me completely incapacitated and close to quadrapeligic paralyzed for months at a time. The pain was more than I can ever explain and over 40 joints were inflamed. Searing pain 24/7. I made a mindful decision one day while lying in bed at 26 years old that this was not how I was going to live my life and slowly, very slowly I started to heal and I started to wean myself off the drugs, the steroids and the painkillers.
When I was 28 I was living in Vancouver and I went to my first Kundalini Yoga class. I couldn’t do the yoga but I could sit or lie down and breathe and listen to the mantra music and one day I noticed that I could sit cross legged. And then another day I noticed that I could step up a street curb. One step, literally at a time my body began to break out of the shackles of this mysterious disease that robbed me of years of my life and living.
As the years went on I lived as normal as I could however there were things I always noticed. For instance I always felt weak and I never had the endurance of others around me. Yes, I look like a big strong girl and I have the mind and determination of a wild bull but I’m not physically strong at all. Also, I have had muscle aches and pains ongoing for what feels like forever and I don’t heal well. If I cut myself it will take much longer to heal than it would most people. This is why some doctors have thought I may have Sjogren’s which is a connective tissue disorder but I only have some of the symptoms not all.
This past weekend I discovered something very interesting and very disturbing which has left me burdened with resentment and grief. Are you ready for the great revelation?
I was misdiagnosed. Not once but repeatedly for the last 22 years!
I didn't know but its a known fact that people who have autoimmune diseases like Rheumatoid Arthritis have thyroid trouble. Gee, no wonder the Rheumatoid Factor never showed up in my bloodwork, it wasn’t necessarily Rheumatoid, it was Thyroid Disease!!! Every time I've had my thyroid tested it has come back NORMAL! How could it be normal when I’ve had a slow growing cancerous tumour growing inside it for years?
Well, that’s because I was an uneducated advocate for myself. I was told that my thyroid was being tested but only the Thyroid Stimulating Hormone (TSH) was being tested not the actual Thyroid Hormones (T3 and T4). And each time the TSH would come back in range, a perfect 1.8 and I would still be exhausted and worn out. I'd still have headaches, constipation, lazy metabolism and my hair has been falling out by the handful for over a year. I've taken almost every supplement known to man and seen every healer under the stars searching for something to lift me up but nothing has worked. I realize now that I was excellent at making up excuses for my exhaustion, too much work, not eating right, not exercising enough, the gloomy days of Vancouver living, daily stresses, etc. If it wasn't for my innate mental drive and soulful determination I would be a crumpled couch potato living off government disability and welfare not able to get my body up and into action. But as you all know that isn't ME. I'm not made of that and I'm not one to give in to a fight very easily even one with my own body.
The only reason I became sick with Rheumatoid in the first place was because my mother had died tragically and violently when I was 22 and within 6 months after I had 2 other great losses, one I’m not prepared to discuss openly and the other a heartbreak, a deep heartbreak. From there I decided the best way for me to cope was to work and I did, almost 7 days a week until I became sick and even after that I would still load up on painkillers and carry on. The body can only handle so much stress before it breaks down and I admit in fear of feeling all that grief and loss I ran from it and put my body under tremendous pressure. All in all it was STRESS that wore me down and made me sick, STRESS!!
For those of you who know me and are intimate with the many chapters of my life know that I have not lead a life filled with rainbows, sweet flowers and little bubbles but rather pages of colourful challenges and rocky mountainous hills and yes, yes, yes one day you will see all these amazing stories some sad but many hilarious in print on your local bookstore shelf. All has made me who I am today which is strong, fearless, able to witness humour in everything, flexible to change, forgiving more than one woman should be, open to any adventure and willing to try anything within reason at least once but I’m tired. I’m tired beyond tired and have been for a very, very long time but its only my body that's tired which leaves me in such conflict. My mind is sharp, active and constantly striving to reach a new height and my spirit is so playful and filled with wonderment and expression and reaches deep into my soul. But today I fall to my knees and admit with my heart in my hands, I'm tired.
Today as I sit here in the quiet of my bedroom currently listening to Miten, partner of Deva Premal sing So Much Magnificence (There is so much magnificence near the ocean, waves are coming in, waves are coming in, halleluja) I strive to find acceptance. This piece of music always brings me to peace and peace is what I need right now as I’m torn between raging anger and knock me down grief. This could have been prevented if I would have known there was a connection between autoimmune and the thyroid but I didn’t and I should have and I feel so ignorant with all the physiology and health and wellness training I’ve had over the years. I should have known better. Damn it I should have! And if I did I would still have my thyroid and I wouldn’t have to take medication for the rest of my life in this physical form and I wouldn't this horrible gash across the base of my neck which will be a lifelong chore of acceptance and self love. Damn, Damn, Damn!!! I guess its just another chapter.
PS - I still want to add music to my blog if anyone could tell me how to create a URL from my iTunes playlist I'd be so grateful!!
isnt it nice when we can read your life and figure out you without the candy coating. to be in the moment with you when we are with you and not be retelling our stories in real time. thanks for taking the time to lay it down. we can reread or replay at our leisure and when we are together in life, we can just play with the energies of that moment. cant wait to play with you...rereading chris giscom's estascy is the new frequency and knowing who i was then inspired who i am now. blessed be.
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