In 2016, we had our last PJ Days organized by Find the Common Thread Foundation. It wasn’t going to be the last, but as the month went along, the realization came that we have done as much as we can do from our end toward our lofty goal.

It started off on February 27, 2016 and ended off on March 31, 2016. An entire month (Autoimmune Disease Awareness Month in the US) and inspired by the writings of Dr. Noel Rose, and the efforts of AARDA (American Autoimmune Related Disease Association.)

On February 27, 2016, Jasper Junior Olympics’ Dream Team (the little guys) raced in their PJ’s. Jasper Junior Olympics is the longest standing and largest participant ski race in North America with over 400 skiers racing the weekend.

The Dream Teamers raced in PJ’s and the organizers of the race donated $1 for every skier in the ENTIRE race – a surprise beyond belief. We were just thrilled to have them participate in PJ’s and help us with our awareness efforts.
February 29, was the official PJ Day in Jasper with our annual Jasper Volunteer Fire Brigade Pancake Breakfast, followed by a PJ Parade through town at lunch time. The turnout wasn’t near as big as last year’s over 700 people, but the spirit was as high as ever with those who made it out.

IMG_2018People throughout town did their own PJ events – PJ Yoga, PJ runs, PJ breakfasts, PJ fitness classes, PJ dinners, and more in the coming days that raised money and more important, raised awareness for this disease that kills more people than any other, yet for various political and economic reasons isn’t counted and not part of the official stats.

The true cost of autoimmune disease is absolutely staggering and one day in the future we will all be a little ashamed for letting this slide by the way it has thus far. All except the folks in Jasper who have gone above and beyond to do their part in righting a wrong.

 

IMG_2084The weekend of March 12 and 13 saw a gathering of Healers using various complimentary modalities and volunteering their services to not only raise the awareness bar but also give people supplementary healing techniques to aid in the healing process for a disease that according to the western medical paradigm, has no cure. It’s hard to heal your life when you’re told by your doctors that there is no cure.

This was a powerful weekend, and I had hoped that it would spill over into something bigger. My dream this year was that with the money we raised we could make Jasper the premier healing destination on the planet. I still think this is a very viable option, however I am not going to be part of this dream and will let it manifest on its own. I have a person in mind that would make this dream a reality, but I will let that person move at their own pace, and if it is meant to be then it will be.

JAG and PJsOn March 18, Jasper Artists Guild (JAG) put on a great show that was inspired by the theme of healing. The Healing Nature of Art was a quaint opening with great food and bevies supplied by The Downstream Bar and beautiful, thought inspiring, healing art donning the walls of the cozy little gallery. We are fortunate to live in this magical place with these magical people we call our neighbours and friends.

On Sunday March 20, 2016 we had a fantastic PJ moment at Jasper’s ski area Marmot Basin. My second family. People who have supported our efforts from day one. I don’t mean just day one of PJ Days, but day one of my personal journey with this disease. I am forever grateful for all they have done for me, my family and our foundation’s efforts through the last six years. We had a group PJ ski at Marmot Basin that felt as wonderful as the previous year’s PJ Parade in the town of Jasper. The backdrop of this PJ event was unsurpassed, and the spirit of the crowd was amazing.

 

IMG_2167The final event of the month, March 31, was a PJ Onesie party put on by the Jasper Legion. I couldn’t personally attend as I had a doctor’s appointment to deal with the new flare of my disease which is the reason that I am personally pulling out of this endeavour and the foundation. I am back with the warriors, fighting for a normal life. Fighting against a beast that has taken too many friends’ lives, and this is a fight that will require all of my efforts as there are new symptoms that are deadly serious, along, of course, with the treatment protocol (which is often the mortality factor after diagnosis – and this is where the stats fail the autoimmune disease patient.)

Jasper gets it. As far as I’m concerned, this is the most educated group of people when it comes to the issues of Autoimmune Disease. More so than even collectives of patients in some cases. That’s because Jasper is a magical place full of magical people who are full of compassion, empathy, curiosity and a will to do something right for the right reasons.

I am forever grateful to everyone who has helped out over the last five years. I have no words to express the gratitude to my sister, who despite trepidation and a strong aversion to go into her own history of Psoriatic Arthritis has stood behind me no matter what. Her amazing family who have put blood, sweat and tears (embarrassed tears) to help support my crazy visions over the last five years. I am eternally grateful to my own immediate family, my unwaveringly supportive husband, my inspiring daughter, my strong, solid parents, and of course my extended family, all of whom have been there through thick and thin. I am grateful to friends and neighbours and even strangers who took up the cause across Canada, the US, Australia, Mexico, Europe and who over the last five years have done so much on PJ Days to make them special and memorable and something that is meaningful and lasts in the psyche of our town and social consciousness here and abroad.


I am truly blessed, and despite the hard times, I can say with total sincerity that this disease has brought out so much more good than bad, and it has been a journey of discovery and awakening unlike any I could have dreamed up on my own.

It is now in your hands. If it is meant to grow, it will grow because of you. If not, then we certainly gave it the old college try, and there is absolutely nothing wrong with that. I leave you with this video I posted on Facebook before the month started… I was a little blown away by the number of views it got, but it is now gone as I have deleted my Facebook account – part of Letting Go of the stuff that isn’t good for me. I have been on steroids since the end of March and already look much different than I do in this video. Love the stuff 😉

No pred
March 2, 2016
About a month on 50mg of pred
May 10, 2016

Thanks for being so awesome everyone. May the Power (not Force) be with you.

With best wishes and much much Love,

Marta Rode
Founder of Find the Common Thread Foundation (now retired)

 

2 thoughts on “PJ’s in 2016

  1. THANK YOU MARTA for all that you do!!! I wanted to share my story with you as well. I wish we could do this together.
    My story begins in the year 1978. I woke up one morning and could not get out of bed as I cannot move my legs or left arm. “I am only 18 yrs old. I went to the hospital, was admitted for a week, but only to discharged by the hospital, with no diagnosis except that I still have Psoriasis’s as well as Psoriatic Arthritis.

    Weeks go by and I’m getting worse, I have red raised nodules on the shins of my legs below my knees. They put warm towels on my legs. They take pictures of my legs for a medical book. My legs are warm to the touch and very painful. The doctor’s are baffled and send me home with no diagnosis.
    After a few weeks of horrific pain, I’m finally carried in bodily by my father and again admitted to a different hospital.
    The doctors tell my parents that they think there may be fluid in my ankles because they are swollen and red and that I will never walk again. But thank God there was no fluid. I spent a week in the hospital only to have them discharge me with a diagnosis of Sarcoidosis and Erythema Nodosum.
    They thought it could have also been Polio or Rheumatic fever and so I spent the next 9 months in a wheelchair, because I had Psoriasis’s, Sarcoidosis, Erethema Nodosum, Lupus, and I was receiving steroid injections in my ankles and taking liquid painkillers just to be able to walk & function. I also had Psoriasis, Scleritis and Uveitis in my eyes and then, one day, it all just seemed to just vanish.

    It’s now May in the year of 1995. I am giving birth to my second son by C-section. During this 3 day experience the only symptom’s that I had was severe tremors and headache. The nurse said it was normal after a C-section. I didn’t agree, as it was.. involuntary and uncontrollable.
    Finally, my husband and I left the Hospital and took our baby home. Two nights later after being at home, I had to go back to the E.R. as I had a severe headache and my blood pressure was up. The doctors gave me a CT and a shot of Demerol, and sent me home. They said I was fine. I knew I was not.

    The next day, I literally woke up feeling like I only had a head in the bed!! I could not feel my body parts especially from the neck down to my toes.. and I had no control of their movements. I was numb from the neck down.. and unable to walk. Today, I have learned that what I had experienced has a name, “PROPRIOCEPTION”. Another symptom of MS that we all need to learn about.

    At this point my speech started to slur. My husband drove me back to the hospital. By the time I entered the emergency room, I had no vision, I was blind and within hours, and I was paralyzed. I could not respond to any of the doctor’s commands. I simply did not know how to respond. Yet I could hear every word they spoke.

    After being admitted for weeks and after undergoing many, many tests, and countless procedures, and having had Nitroglycerin put under my tongue every few hours, the only diagnosis that I received was that I had Post Partum Psychosis and that I needed to see a Psychiatrist.
    I remember a Neurologist checking my balance before I was discharged, and because I had a slight responding reflex, he said I was fine, yet… I still could not see or walk correctly. I had no perception of time or space or even where I was and I could not drive a car as I didn’t know how? I relied on my husband for everything that had to do with thinking.

    As time went by my vision finally did come back as tunnel and “mirror like” vision. I was discharged from the Hospital with 1mg of prescription Ativan 3x a day as it calmed the tremors that had overcome my body as I left the Hospital. But I listened to the Doctors recommendations and I did go to see a Psychiatrist and had a Neuropsychological evaluation.
    It was my Psychiatrist who said I had every symptom of Multiple Sclerosis and suggested that I see an MS specialist. So I made an appointment to see an MS specialist who finally diagnosed me with Multiple Sclerosis. He was also very upset at the other so called educated Doctors as they had no idea as to what they were looking at when viewing my MRI’s.
    He said it showed that I had MS on all different MRI’s. He also said I had a host of other autoimmune related diseases as well.

    In June of 2001, I was told I had a secondary disease diagnosis called Multiple Sclerosis. I had to undergo speech and cognitive therapy for almost 3 years and I had to be detoxed from a medication called Ativan that I was now addicted too for the Tremors and was now shutting down my digestive system. I was taking up to 18 mg a day of Ativan because of a MISDIAGNOSIS.

    I feel that telling my story here would be of interest to anyone who maybe experiencing or already has experienced this same kind of situation. Im also telling my story so that I may one day save someone’s life.

    One doctor wrote a letter to my Psychiatrist that he had spent over an hour counseling me on my symptoms and complaints. Others said it was all in my head.
    Since my diagnosis of MS, I have also been diagnosed with ITP ( Immune Thrombocytopenia Purpura as well as Anemia.

    Today, I have become a self educated and volunteer leader for a non profit organization called American Autoimmune Related Diseases Association at http://www.aarda.org.

    We now have a live support group in the local Detroit area with meetings held once a Month, March thru November only for the comfort of our members.

    Our autoimmune support group is the first of its kind in the nation, as we bring education, research and support, to the growing public and to the healthcare system on over 100 autoimmune related diseases.

    We are located at Henry Ford Medical Pavilion,
    16151 19 & Hayes, Clinton Twp, Mich 48038.
    Meetings are every 2nd Thursday evenings of the Months March thru November only.
    4th Floor-Conference room 3
    Times: 7:pm to 9:pm

    We look forward to seeing you all In March. Please contact http://www.aarda.org for more information or call 586-776-3900 04 586-741-9918.
    Thank you so much!

    Kimberly Radomski
    Snugs1@wowway.com
    Volunteer Peer Group Leader for AARDA

    1. Hey Kimberly,
      I’ve never heard your whole story but as you know I’m a huge fan of AARDA and you. What a crazy ride you’ve been on. I love it when the docs who are feeling in over their heads, will instantly default to ‘it’s in your head’. That should be the tip off that a doctor barely passed medical school. They like to assume we are all hypochondriacs yet the number of hypochondriacs must be significantly smaller than the number of autoimmune disease patients, but that seems to never be the thing they jump to – it’s always ‘it must be in your head’. You really do have to be your own best advocate, and learn as much as you can, regardless of how much that intimidates the egos in the medical profession. The real docs, the ones that know what they’re doing and also who have compassion for their patients will never tell you that. And when you find one of those docs, like I have (after some serious searching) you gotta hold on to them like a pot of gold, because that’s what they are, rare and precious.
      Big hugs to you and yours and thanks for being my inspiration.

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