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)-

Hope

Hope

Wednesday, January 2, 2013

Mind over Body?

Have you ever wondered how much control your mind has over your body? 
and do you believe your mind or your physical body is stronger in a fight about willpower?

I admit I do this every time I get sick. I believe my mind can override any ailment my body might have, which to 98% of the time means my Asthmatic Bronchitis.
I battle this about two to three times each year for the last 14 years and every time I know when it is starting to act up as it starts with a slow burn and bubbly feeling on my lungs. Then my breathing gets affected as in me having to take very shallow breaths because any normal or deeper breathing causes those painful coughing fits that end up giving me Migraine like headaches.

Well, I love living life and being on the move, so I detest this with every fiber of my brain...
I knew in my heart my Bronchitis was returning about two days ago. The boys have started up with head colds and when they get a plugged up nose I will get issues with my lungs. My last battle was never cured so I knew the last Antibiotics and steroids where never enough but since my lungs sounded better the Doctor did not order anything more even thought I told her I still had that slight burn. So this was laying low and only waiting for a trigger to set it up ...

To make a very long story a bit shorted, we had planned a trip to Ski and Snowboard today for a while out. Those plans were made right around Christmas and if you know me then you realize that hardly anything can stop me from going Skiing!
Last night was very painful and I got very little sleep thanks to my lungs. We had planned to get up at 6:30 am and head out by 8 am. I finally 'passed' out from exhaustion by 5 am. I almost jumped out of bed when I woke up at 7:30 am to see everyone else still asleep as well!!! I woke up my husband and told him we needed to get moving when he looked at me and said we are NOT going. That I was way to sick and needed to stay in bed ...
It took me a good 30 minutes to talk to him and convince him that we needed to go....
See, my issue is that 'yes' my physical body as in my lungs might not be up to speed but my heart and mind NEEDED this ski day. I love love love being on ski's and out in the fresh air. There comes a huge piece of happiness and peace for me with this Sport and I did not wanted to see this day slip away ...
Finally, Ron conceded but not to happily and by 8:30 am we were on the road.

Now came obstacle #2 .... every minute we were in the car heading towards Monarch Mountain the Temperatures dropped with a record of -18'F. Ron kept looking at me and telling me that up in Alaska they would close a Ski Resort if it got below -15'F. So I sat their in silence looking at that Temperature Gage and willing it up ... all this while focusing to breath shallow so I would not get into any coughing fits....

The End Results was we arrived in Monarch at Temps of 4'F!!! Sunny Blue Clear Skies and we had a most wonderful day. My cough slowed down a lot when I was out on my ski's and it only tried to act up when we went inside the Lodge for lunch and later a Hot Chocolate Break.

We are home now and I feel wonderfully recharged and happy. How my lungs will do tonight is still up for the open but for now I am so happy we went.

On Connor's Medical News we thought we saw some improvements in his coughing yesterday but he coughed nonstop all morning as well but it stopped for most of the day as well. Not sure yet if I call the Nexium a success but he will keep taking it and on the 8th we will see Dr.Stillwell the Pulmologist and see what his opinion is :)

Hugs,

R A C A

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