Our Journey thru JDM and Life!: Missing Betty Mak....

Timeline from first symptom to diagnosis

Our son Connor was diagnosed with JDM in January of 2010 and here is a bit of a timeline to show you how this diagnosis was reached...

Towards the end of November 2009, Connor mentioned some pain in his right foot. We found a Plantar Wart and began treating it. We went on vacation in Germany were he mentioned a pain in his knee's, to feeling in his own words, pain 'inside his legs'. By the time we got home on December 9, he needed to be carried almost everywhere. By the end of December he was unable to feed himself, dress himself, sit up or down, lay down and of course walk. Here is a list of tests he went through between December 10 to December 28, 2009

X-ray of his Hips

MRI of his spine

X-ray of his chest

CAT Scan of his brain

CAT Scan of his chest

MRI of his chest

MRI of his hips

Numerous Blood Work

Spinal Tap

and we finished with a Muscle Biopsy

There were many speculations of what might be causing Connor so much pain and one of them was Gullian Barre Syndrom (GBS) due to his first symptoms showing up within a few days of his H1N1 Flu Shot.

The final Diagnosis came on January 11, 2010

-Juvenile Dermatomyositis (JDM)-

Tuesday, July 30, 2013

Missing Betty Mak....

Thanks to my friend Heidi, who I often refer to as my little sister, I was adopted into a most wonderful family.

First, thanks to FB, I met her beautiful Mom Nancy, and then was introduced to Heidi's Aunt and Nancy's sister Betty.

So many times I felt as if Nancy, Betty and I were the three Musketeers when it came to political issues and matters of humanity and human rights. Betty was also a voice for CureJM and had so much wisdom for me in regards to questions on how to deal with a rare Autoimmune Disease.

Her insight came from living with an Autoimmune disease for years and using many of the same medications Connor is and had been on....

We talked and messaged about the fear and frustrations that the side effects of some medications have. How they are needed to fight the disease but are also a thread to other areas in our body.

Getting to today's date, July 30, 2013, was not an easy journey for her. She had been in pain for weeks fighting Leukemia that with pretty good likelihood was caused from years and years of medications to control the Autoimmune Disease. More added pain came when it was detected that she also had Bone Cancer. Morphine was not a match for her pain and once again we learn how devastating Cancer is...

She passed away today and died way to young. My heart hurts for my friend Heidi and her Mom, Nancy. Betty's husband and her daughter and family.....

Goodby Betty 💔 and may we meet again so we can talk some more about all the injustice going on in this world!

You are loved and adored by so many... And I will miss you so much on FB.