Surprise, surprise...
Spencer had his appointment with the Rheumatologist this past week and it was no surprise that he has Hypermobility disorder too! Imagine that. His level of pain is not as bad as Shelbie's, probably because he has more muscle mass than she does but he still experiences daily, chronic pain.
This diagnosis helps to explain the carotid artery murmur as well. This visit went much better because we weren't blindsided by the news. We sort of knew what to expect. Meh!
I'm not even going to bother taking Sam in. I already know the boy has it. He can fail all the same tests that Shelbie and Spencer failed. Sam has always been able to turn his feet completely sideways and almost facing backwards.
The conversations I have had with several parents who have children with hypermobility disorder are extremely interesting. The similarities in all the symptoms we have SDS, Mito or otherwise are uncanny! Depending on the doctor and their specialty, the disorder is either grouped with autoimmune stuff or mitochondrial stuff. Makes sense.
I have also come to terms with the fact that this is not a new disease or diagnosis. Just another manifestation of what they already have going on.
The problem with chronic illness is that it's just so chronic and ongoing. One day, they may feel okay, the next day or even the next minute things have deteriorated. In a disease that is progressing, set backs like this are to be expected. I just don't enjoy them very much.
I know this may sound twisted but last night, we were reminiscing about the good ol days. We have seen some pretty dark moments and at times felt buried in problems, hard problems. As experience after experience was noted and discussed I began to see how far we've come! WE have come a very long way!!! I'm surprised that none of us have thrown in the towel and called it a day yet! We keep going no matter what! Maybe a bit slower but we keep going.
This diagnosis helps to explain the carotid artery murmur as well. This visit went much better because we weren't blindsided by the news. We sort of knew what to expect. Meh!
I'm not even going to bother taking Sam in. I already know the boy has it. He can fail all the same tests that Shelbie and Spencer failed. Sam has always been able to turn his feet completely sideways and almost facing backwards.
The conversations I have had with several parents who have children with hypermobility disorder are extremely interesting. The similarities in all the symptoms we have SDS, Mito or otherwise are uncanny! Depending on the doctor and their specialty, the disorder is either grouped with autoimmune stuff or mitochondrial stuff. Makes sense.
I have also come to terms with the fact that this is not a new disease or diagnosis. Just another manifestation of what they already have going on.
The problem with chronic illness is that it's just so chronic and ongoing. One day, they may feel okay, the next day or even the next minute things have deteriorated. In a disease that is progressing, set backs like this are to be expected. I just don't enjoy them very much.
I know this may sound twisted but last night, we were reminiscing about the good ol days. We have seen some pretty dark moments and at times felt buried in problems, hard problems. As experience after experience was noted and discussed I began to see how far we've come! WE have come a very long way!!! I'm surprised that none of us have thrown in the towel and called it a day yet! We keep going no matter what! Maybe a bit slower but we keep going.
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