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

Monday, February 25, 2013

Carmen ...


  • Those of you who know me personally also know or have heard me talk about my most wonderful sister Carmen. She is the first born of our Clan of five kids and there are times I wonder if she was the one who has gotten the purest heart of all of us ;)
    Truly, I can describe each of my siblings in a certain and happy way but when it comes to describing my oldest sister the words, happy, laughing, giggling and joyful come to my mind, but also someone that absorbs stress like a sponge.
    For some wicked reason when Carmen and I get together we always end up laughing tears and giggling like little girls but she also inspires me constantly to live and eat better. She is the oldest of us and was 15 years old when I was born but I do not feel 15 years between us when we are together and I think by me having older siblings explains why in many cases my friends are older then me.

    On Friday morning I got a call from my Mom and she gave me the horrid news that my so adored Sister Carmen was in the ICU due to a Heart Attack she had during the night.
    Now she is in her 50's BUT the shocking thing about all this is that she is hands down the healthiest person in our whole huge extended Family.
    She has been a Flower Child and still is and has been a Vegetarian since her 20's. Her husband and her grow their own Fruits and Vegetables and she even grains her own Flour for breads.
    They are both very active and she has traveled to almost every Continent, often backpacking through Countries. She takes a bicycle to work in the summer and loves to walk and hike. They ski each winter and by just looking at her you would think she was a picture of health.
    She is this tiny person who is a tad taller then me and is a size 2 maybe 4! and I am 5'6''!
    I know in her case I would point the source of her heart-attack to her job. She has a very stressful position at a Bank and every time we are together she tells me how stressful the work is for her.
    I have been able to Skype with her on Saturday and Sunday and I was thrilled the two of us were able to be giggling and laughing with each other as we always do. She really is a ray of sunshine even if she looks so grey, white and tiny in her hospital bed. However, there is not taking lightly to what happened here. This was a serious and still is a very scary wake up call for her and for now she was moved into a private room out of ICU but a lot of testing will be done this week.

  • She is already asking to go home BUT the doctors told her she will have to stay at least until Friday maybe longer and then they will release her straight from the Hospital to a three week stay at a Rehabilitation Clinic.
    I am super proud if her as she has her mind in one place as even questioning the nurses already. They handed her a cocktail of pills that seem to be a standard for heart attacks patients but she asked to have each pill explained.
    One was a aspirin to help thin the blood,
    One is a Beta B blocker
    One was to lower her cholesterol (which my sister chimed in in pointing out she has this monitored all the time due to our genetic link and that it is always a tat high... Normal for us 
    The last pill made her almost jump out of bed as it was a blood pressure lowering pill!!!! Her blood pressure has always been very low and came in at 90 over 60. She asked the nurse if she wants her to have no blood pressure????
    That's my sister, always alert and now we have to hope she can also learn to stop worrying about work and learn to let go of outside stress factors .... I am not a good one to teach this but I have gotten better at this in the last three years ... thanks to JDM. Those around me know how much easier it has become for me to say 'NO' but I am still improving ....

    Hugs,

    R A C A

    1 comment:

    1. Anke, I am sorry to hear that Carmen and your family are going through this, but I am so happy to hear that she seems to be recovering well. What a shock! What symptoms did she have that prompted her to go to the hospital? I have heard the symptoms are often different in women, that's why I ask.

      I will keep you all in my thoughts and prayers. Prayer and meditation are good for relieving stress! :-)

      ReplyDelete