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, January 27, 2014

The need to belong and be understood?

So here I am thinking again and I am wondering if people in general crave to belong to a group and if that gives us as sense on comfort and belonging?

I have the tendency to criticize the Sheep mentality when I feel as humans we to easily follow someone or something instead of stopping to think for ourselves. I often challenge those around me to not take the easy route and follow the stream but to turn and swim against it sometimes ;)

However I am now wondering if there is a need to know that there are others like us and that we are indeed not swimming alone :)

I always believed I did everything my own way and in many ways I feel it fits me very well. I went against the stream each time I felt I was told I could not do something. Often it payed off and other times it backfired.

However back to needing this feeling to belong…. I look back and I realize I do have the tendencies to add myself to certain Groups but also leave them easily once I move on to another interest or subject.

The first beloved group was in the early years of 2000 and was called CAR Ladies. CAR stood for Center of Assisted Reproduction. We were a fun group of women who talked online and met for lunches and dinners and who all had one thing in common, We were dealing with infertility. So all of us went to the same clinic with the hope of becoming pregnant. We were an amazing support for each other as the Invitro Treatments are anything but fun. We could relate to each other on the numerous injections we had to take daily and how our whole life was consumed with trips to the clinic and daily blood draws. Truly I looked like a junkie as my arms were bruised up and down from the numerous blood draws. We cried a lot when the a procedure was unsuccessful. We laughed and were happy when one of us succeeded and carried to term. Those women made this time period bearable in many ways. We all sooner or later lost touch as in time there was either success, defeat or as in our case turning our focus towards Adoption. Of all the great women I met I have to admit I am only in touch with one all these years later……

Then I made the transition into the next Group setting in the form of Adoption Support Groups. In this one I admit I mostly observed as there was a lot of diversity in regards to Adoptions. Those who adopted within the US and those who went Internationally. I did get more involved once we had started the process and we found a support group for just the Agency we were using. Here once again we moved on after about 1 year after the Adoption was final with our Dumplings. I stayed in the group for another year to help those that were just starting the process but life gets very busy when you are a Parent of Twins so this also tempered off. In this Group as well I was friends with many but are now only in touch with one family.

So off I went and found a new group to replace the old. I became friends with other Twin Mommies. I was lucky to meet a fellow Twin Mom at a mall and together we joined a Multiples Club. While I left the Club when we moved from TX to CO, I can happily say you don't really outgrow having twins so we are still friends with many families we met. I joke many times that there is a certain language you speak when you are a parent of multiples and I felt so at home talking to fellow moms that I met. Actually two of my best friends came out of that group :)

Following this came the next group adventure a few years later. This one I did not seek out but were and are grateful for it. I think while I truly did not want to be a part of this group I will belong in it one form or another for the rest of Connor's and my life. That group would be CureJM and just as with the Twins Community, here as well you feel as if you speak a different language that only those in the loop understand.

I guess at this point I am pretty fluent in Infertility, Adoption, Twin Parenting and JDM…… Still learning of course as with everything else it becomes dangerous if we feel we know it all….

So there are certain labels that we receive through our life and some stick and some we leave behind. I embrace the lessons I learned in all of them. I believe all of them shaped my life and might have changed my characters to a small degree. However they do not define me as a person. Just because we have one thing in common with others does not make us clones. Of course I get thrilled when I meet someone in a group that has similar believes and approaches, so there might be a little bit of sheep in me after all, but please remember I do claim the color black - lol

Hugs,

R A C A


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