Thursday, 7 August 2014

Lot's of things. But Mainly Lost Time!

I am really struggling with time and getting things done.  I don't seem to have too many extra things in my day but it is full.  I haven't written a post here in a while and I have worked very little on my two other projects (they are a surprise).  I will talk more about my other projects when they are further advanced.  Right now everything seems to be in a holding pattern or moving backwards. 

Micah has been volunteering at the barn weekday mornings, except on therapy days, so usually four mornings a week she is there.  She is really enjoying it.  She finished her forty hours of volunteering for high school in the first few weeks and she hasn't even started grade nine yet!  She is doing well at it and getting stronger and braver.  She can lift sacks of feed and even killed a spider one day when no one else was around to do it for her!

Last Friday, August 1, we finally got into our appointment at the Child and Family Clinic to see a child psychiatrist.  We had been referred in December, when Micah was first diagnosed with PTSD by the pediatrician.  The psychiatrist is in agreement that she has PTSD, so that is good but they only offer medication and CBT.  We are taking her suggestion of increasing the one medication and discontinuing the other.  She also agreed that since the equine psychotherapy is working, we should continue.  We are noticing gradual changes especially at Micah's riding lesson.  I know it will take a long time for her to get over the damage done to her at the Catholic school.  Although she had lots of anxiety before her trouble there, she was happy most of the time.  She is no longer as happy and definitely not trusting anymore.

Micah is struggling with a lack of friends.  She has some distance friendships but the last friend on our street has stopped coming around.  I don't know whether she has outgrown Micah, been turned by the other kids on the block, or whether it is something else.  Micah is also losing another friend with whom she rides once a week.  Even though the girl's mother says they will still get together, I know they are busy and the parents are divorced so it is not likely that Micah will see her much, if ever after the end of this month.

I don't know where all my time is going.  I do my usual things each day but some days I just can't finish, especially if I have extra things like appointments etc.  I think I am going to have to make a list each day after I have done each thing and document the time it takes, kind of like a time budget. Then maybe I can figure it out.  Of course, that is going to take time too!

I have also been researching Ehler Danlos Syndrome EDS).  I first heard about it after Donna Williams, an autistic woman I follow on Facebook, posted about it.  I thought it was interesting and that is all.  I started reading bits over the past year from her and also there was a young woman who did a parody of 'Let It Go' as an autism version.  She made it after being diagnosed as autistic.  I went to her Youtube Channel and website and discovered that she also has EDS.  I started becoming a little more interested as I found a few other autistics with EDS.  I began to wonder if they have a high comorbidity rate and whether I could possibly have it.  I still wasn't entirely sure what it was other than the fact that people are hyperflexible, which I didn't think I was.  I can't do the splits after all! 

It wasn't until about a month ago, when Donna William's posted a video by a lady named Dr. Diana.  She posts under the name, prettyill.  I started watching her videos and discovered that I am in fact hypermobile.  Here is her video on hypermobility type EDS https://www.youtube.com/watch?v=k4ob-Lf8sTo.  I am now working on getting a diagnosis.  The tears I have in my knees and my torn calf muscle would make sense, if I do in fact have this condition.  Hypermobility is scored with the Beighton Score.   I think I have the hypermobility type.  I don't think my skin is too stretchy but I do bruise easily.  I score at least a 5 on the Beighton Score- I can't check the degree of angle in my elbow or knees myself, I have double jointed thumbs (grosses Micah out!), lots of pain and various other issues including fibromyalgia.  I fit the diagnostic criteria for hypermobility type. 

My new doctor (we get residents so a new one every two years in July), said he will research it.  My husband saw our rheumatologist, who said he can't refer for genetic testing.  Based on what I have been told by local people who have been diagnosed, my best bet is to get a referral to the Mt. Sinai Wasser Pain Clinic and a referral for genetic testing at the same time at the same hospital and see which I get into first.  I will need both anyway.  The problem is there is no genetic test for hypermobility type yet but they would need to rule out the other types including the deadly vascular type.  My father did die of an aneurysm but he was in his sixties so it is unlikely that he had it since most die by their forties.  My mother was and my sister is hyperflexible so there is some inheritance there.

We can see where some of my time has gone missing, researching EDS!

That's about it for now.  We are currently preparing for Micah's hopeful return to school in September.