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, February 16, 2011

Stockholm Syndrome, again or still?

I had a lot of great conversations today with friends of mine and one thing that has nothing to do really with how today went but that stuck to me during one of my phone calls was the following:

When you are dealing with a sick family member you of course take charge of their care in regards to finding a great Medical Facility and Medical Employees. You go and try to find the best doctors in the field, you say that cost does not matter because for your child or partner only the best is good enough. You know at some point you will face parts of that decision because the bills come in but you might worry about them but you do not regret them per say.
Now, after a bit you find out that the Doctors of course are vital to deciding on the right treatment plan in regards to Medications and Therapy, and then you see that the ones helping you to put this plan in action are the Nurses, Therapists and even the Pharmacists down the line.
You make your choice and then you figure you did your home work by finding the right Doctors and everything from there will fall into place.... WELL, let's think again.
I could page back on this blog the times we had issues with medical personal, appointments not falling in place, mistakes in blood work, waiting times in offices or the ER's, mistakes or problems filling prescriptions etc etc. I am not even mentioning dealing with Insurances because that is a blog on its own.
So, then in this crazy little world you live in, where you wonder if anyone really listens or cares there comes this light in the form of a wonderful caring Nurse, Pharmacist and Therapist. You so cherish them that you hope each time you go for Infusions, go to Therapy or pull through the driveway of the Pharmacy that they would be there working today. Your chances are not always the best because of course they have a life as well and they don't just work when you come in with your son.
So here is my Stockholm Syndrome thought. I am loving and cherishing people that are rare and are really doing an amazing job. Now how can this be? Of course I want to recognize those that do a great job but why the HECK are the other 90% not doing it??????? How can you go to work and get paid and make mistakes and peoples life miserable and not do your job?
My job I thought was trying to be a good wife and mother and I had no idea I had to take a crash course in the whole medical field so I could do their job when they mess up or even worse I have to find the mistakes they make and fix them before my child could suffer from it. How wrong is this?
I do not get paid obviously but those services even put me in debt. Can someone here please make sense of this for me?
Today's incident at our pharmacy was minor per say as the Antibiotic I wanted to pick up was never filled because they had not checked the answering machine for a request from Connor's Doctor and had erased it by accident before listening to it. So no drive thru for me and I was so so so lucky I had Connor's Doctors Cell Phone number programed in my phone and got a hold of her. I did however have to drag both my boys into the pharmacy and wait for it to be filled. I was not happy this morning and sadly I was not nice at all to the poor girl working. It is how they say the drop that fills the bucket. I did say sorry when leaving but truly why can nothing ever go as smoothly as it should?

I said it before in regards to being a Weather Man (Woman) and I say it again. I want a job that lets me mess up and pays me and even gives great Health Coverage! Please send me a msg if you have one!!!

Just think for a minute next time you get on a plane and figure how many times can the Crew in the Cockpit afford mistakes during their career? How many chances would my husband get to crash a plane and walk away saying, oops I am so sorry I just wasn't focused and I am just having a bad day. I promise I will do better next time?

Now remember everything I write here is my story and I am not trying to implying that happens to everyone. It happens to me and it is my world and I am not always happy with it.

Hugs,

R A C A

1 comment:

  1. WOW!!!! You are so right, Anke!!! I am so sorry that your day went as it did. There is no reason that you had to drag Connor, sick, and Alexander into the pharmacy to wait for that prescription. I hope that today taught the pharmacy that they need to really be careful when checking the answering machine and filling prescriptions.

    I hope that tomorrow is a better day.

    Hugs,
    Susan

    ReplyDelete