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

Thursday, January 5, 2012

Annoyances


So yesterday my Mom, Dad, Ron and I finally were able to sit down and watch the movie "Christmas with the Kranks". We had all read the book that inspired this movie (Skipping Christmas by John Grisham) so this movie was suppose to be a part of our Christmas movie lineup.
I ordered it around December 18 from Amazon and the tracking showed it would arrive well before Christmas on the 21 st. Well, it did not show up so I figured it was held up due to the Christmas traffic. Not until the 28th did I think about checking the tracking on this Shipment which to my surprise said the package arrived at the Lake George Post Office on Dec 21 at 12:01 pm. Sure enough, Ron went to the Post Office and it was confirmed that it was scanned in that day.
To make a long story short. The Gentleman working there was very apologetic and figured it must have ended up in the wrong P O Box. No big deal on this part as everyone makes mistakes and Christmas is always stressful for a Post Office. We had other people's mail before in our P O Box but there is a drop box for misplaced mail so no big issues at all as you just put it back in the box.
In our case unfortunately the person that received this movie decided to keep it. Truly great Christmas Spirit from their end ...
I know, I know, it is just a movie and my spirit should be AND used to be up to a while back that I would shrug it off and hope who took the movie had a fun time watching it. 
I really wonder why there are such contradictions to my personality, that is so opposite to what the reactions for the majority of the population is when faced with a life changing event.
For one, many feel that small things just don't matter anymore in the big picture and well I know for me it so the opposite... 
Were I used to look for the good in people and believed always in the best outcomes I now have no patients for people who lie, are incompetent, inconsistent, selfish, arrogant (not to confuse with confidence) or just plain ignorant. 
I also did not run towards a stronger believe in God as so so so many of my fellow JM / Cancer Families have done but as you know started questioning a believe that often left me with no answers or true facts....
I started questioning people who had no true connection to me and my trust levels went down a lot.
I don't think there will ever be a chance for me to be the person I used to be and while others around me might miss that part I so many times feel like my eyes finally opened up. I am so grateful to my family and friends who get this!
So here this little event about the 'lost' DVD plays right into my new disposition. Stealing is stealing, no matter how you go about it. Someone being pick pocketed in Rome, broken into their house in Miami or taking something that is not yours to keep ... You are no better then them if you knowingly keep something that is not yours.
I would love to see them sit in Church on a Sunday, trying to make everyone around them think what a great godly person they are.
Oh and by the way there is a Church now in Sweden that made it a Religion to steal and copy online, I believe they are calling their believe Kopimi, and you can feel it is your right to download Lady Gaga for free.
Yes, I am not above everything or everyone, and of course I am not perfect. I can be very blunt now, I am very outspoken and I do know words can hurt just as bad if not worse then actions. I know I have not been the kind of friend I should be. I actually have done a good job at pushing people close to me away. What will always keep me sane and level will be those very close to me. They know I am trust worthy and that I would do anything to keep them safe.
I spend more time with my intermediate Family and I feel that I am more patient with the boys. There is not much patience for others so maybe I should work on cutting people more slack.....
I know I don't put on a show, what you see is what you get, always have and always will. I don't lie or try to be someone I am not just to fit in. I stopped trying to fit in a long time ago - most likely when I turned 20 - but my Mom might say the moment I started talking ;) - haha
So I went and bought us a new Movie and I am happy to say the four of us were laughing a lot last night.


I do want to Thank the Gentleman that works at our Post Office and who made a mistake but took ownership right away and was very apologetic. He right away told Ron he would replace the movie. I am not putting any fault to him as we all make mistakes, it is those that don't admit making them I have issues with.

So this is to keeping people with integrity close to you. I respect those that tell the truth more then anything and those that truly love you always will!
Hugs,
R A C A

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