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

Friday, May 20, 2011

Cynic or Disillusioned?

If you know and love me then bare with me tonight :) I am in one of my deeper moods and I am feeling the need to vent :)

First my thoughts are about JDM directly and the following is indirectly but you will get the feel of it.
Do I dislike and even have a hate for JDM at times? YES! but here is one important thing I want to be known. We as a family are NOT victims to JDM and we do NOT sit down and feel sorry for ourselves each and every day. The ones who are the true victims of JDM and other deadly diseases as in Autoimmune or  Cancer are the families who's kids died from it! If you have a child that is still fighting or doing fairly well or even in remission then you are still on the winning side. Is it fair your child got sick? NO, but I have been around a few families now that lost their child and no! no! no! pain will ever compare to that. I am grateful and happy with Connor's progress and I know he is still worse off then some cases and in others he is way better, but most importantly he is not dead. So who am I to complain, really?
Now this does not mean I am not going to have days when I do feel sad and frustrated at the loop that was thrown our way, and I do understand the frustration and fear of fellow JDM families. The fear when you first get the diagnosis and the pain you feel when you see pain in your child. I am NOT making light of this at all, I know and live it, but I just think at times we need perspective. I will consciously love my live because I still have everyone in it and my weekly trips are rather to a Doctor and Therapy then to a cemetery. It is as simple as that for me ...

Now comes my next complain for the night. What is happening with all the Hero and Profession worshipping?
Am I to think just because you wear a certain uniform or you have a certain job means I have to be in awe of you and believe everything you say?
Let's take on Religion again. I know many have been offended of my previous postings on questioning my beliefs, but is it really about my beliefs or those that are trying to sell it to me. Should I honestly listen to Pastors who lie and deceive? We have a Church here in C-Springs who acted all shocked when their leader turned out to be not the wonderful family man he preached to be but instead was having sex out of his marriage with another man and taking drugs, all while publicly speaking against Homosexuality ... mmmhhh, would we call that a Hypocrit?
Then we have this Pastor a few weeks ago who told his congregation that he was a Navy Seal and Hero, only to find out he was making it all up. A PASTOR? LYING??? I am just shocked!;)  I am sure as time goes on there were about 100 Navy Seals in Team 6 that took down Osama Bin Laden. Let's just give them time to make up their story!
I could throw out several more cases like this but you get my point I think. I am trying to not even start with Rome and how holly everyone from the Catholic Church is. I am sure all the sexual abuse victims belief that as well. For years and years they raped children but hey, that's just life right! What does not kill you makes you stronger. I hope those kids are!
Now I can write all this because of course tomorrow the world will end! :):):)
How credible will that group be when we are still all up and standing tomorrow? To the ones believing in them very credible most likely. They just got the date wrong 'again'! Of course it does not matter because they will come up with another excuse to call out the end of the earth in a few more years.
Yes, I am disillusioned. I think in the big picture we humans must be very weak and we must all crave stardom in one way or another. Worst of all those who get away with it must all feel so invincible.
I just laugh at the fact that we seem to have so many Navy Seals now, retired Hero's and that Vietnam had more soldiers on the ground after the fact because all of a sudden everyone wearing a Uniform now or is retired was there and done that. Do we not realize how insulting this is to the real Hero's? Just because you served does not put you automatically on the Hero Pedestal. I have seen and heard enough corruptions, abuse and rape stories during my time as an Army Wife to know that not everyone is a shiny penny. This goes for every profession. We have so many true Hero's we do not need those with low self esteem to make up stories. I am one person you would have a hard time selling it to.

So sorry if I am once again stepping on toes but if I really am then I have to wonder what is it that bothers you about my post?
I am angry to see people in the position of power to abuse that position and get away with it.
As I said, a Cynic and quiet a bit disillusioned at times and grateful that those I call friends are the real deal. So I guess there still is hope ;)

Hugs,

R A C A

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