Wednesday, 26 November 2014

Confusing Trip!

This isn't completely about autism but it is about me and does involve my autism because it is a big part of me.  It is about my trip to the genetics clinic for my Ehlers Danlos assessment.

At the beginning of the month, I had my appointment at the Mount Sinai genetics clinic.  I have never driven alone in downtown Toronto other than going to the parking garage across from St. Mike's.  I carefully went over Go bus schedules and where to catch the bus, where to get on and off of the subway, how to get to the clinic from the subway.  I printed maps and everything! I also mapped out how to get to the Cannabis place to get more medication before getting on the subway to come home.  It was within walking distance, so I thought no problem. The problem is that on a map the buildings are nice flat shapes in between the roads and subways only have one entrance/exit.  In real life buildings are 3D and you can't see the roads around them.  It is hard to find street signs, there are no arrows pointing from the Go bus station to the subway, there is more than one entrance/exit from the subway and there are lots of people and construction.

The good thing is that I had some of my medication saved and took it before I left.  Very good thing!  At the Go bus station, the ticket counter was closed and I had to get a ticket out of the machine, which I managed.  Next, I had to figure out which number was the bus stop for the bus that I needed.  I followed some older people to the only bus there and asked if it was the one to Union Station.  It was.  I don't know how you are supposed to know which stop is which but I got it first try so that was okay.

We got to Union and then I had to find the subway.  I thought it would be where the buses pulled in but it wasn't!  I couldn't find any signs pointing the way, so I tried following people but then lost them.  I found a subway finally.   There was construction everywhere in that area.  I got off the subway at the right stop, but there are always two ends to the subway station and both have different exits.  I went the way I thought was right and walked along what I thought was the right street.  It was sort of right, but there would have been an easier and faster way.  Since I had no idea on my map where I was, I brought up Google Maps on my phone and followed the little arrow to get to my destination.  I was anxious, but nowhere near what I would have been without my medication.  I'm glad I had a little left. 

At the clinic, I was supposed to get a hospital card before going up but there was nobody at the desk so I went up without.  I was told to go across the road to the actual hospital and get one there and then come back.  I was given directions but forgot most of them as soon as I went out the clinic door!  I went across the road and knowing that there were two hospitals side by side, I asked a security guard if I was at the right one.  No, I was to go next door.

I went in and found my way to registration, got my card and went back next door.  They took in me at the clinic quickly.  Nice for a doctor's office!

I saw someone who took my health issues down and my family history and then she told me to get into a gown for the doctor.  I asked if I had to and she said she guessed not.  I hate those.  I just had to take off my sweater.  The first lady was nice and the doctor who came in next was also very nice.  She took down more history and asked me questions about things that I hadn't thought to list like if I get migraines. Since then, I have thought of other things but I'm not sure how to get a hold of the doctor.  I will have to wait until they call me for my results.

I found out that I do have stretchy skin.  I didn't know.  It is mostly on my face and I actually score 7/9 on the Beighton Score.  I was told that I overlap hypermobility and classic EDS.  The doctor also was interested in my autism, learning disabilities, and anxiety.  She also said there was something genetically going on in my family, based on history.  The doctor decided on genetic testing for EDS type (hypermobility doesn't have markers and other types may or may not show up), she is also checking for Fragile X (because of the autism, learning disabilities etc), and chromosome deletions.  She said something may or may not show up and that they may have to do more testing.  I was asked if I would participate in a study to which I said yes.  I was told that they would have to bank the blood pending OHIP approval for the genetic testing.  It goes to the States.  I won't get results for months- I was told probably late winter or early spring.  It's going to be a long wait!

They were very nice at the clinic.  Next, I had to go back to the hospital to get blood work done.  I was told they wouldn't know where to send it if I got it done in Newmarket so I had to get it done at Mt. Sinai.  I found the blood lab after a bit of searching.  Places really need to be better signed for those of us who need such things.  It is an accessibility issue.  I didn't have to wait long and then the nurse had to figure out what to do.  There were many vials and they had to go to three different places so she got the bags ready ahead of time so things didn't get mixed up.  That is a long way to go if I had to go back just to redo blood work!

With that sorted out, it was getting late and I was hoping to be home in time for Micah getting home from school.  I had it in my husband's calendar just in case though.  I decided that since I got lost just trying to find the clinic, that I would not go to the Cannabis place (too bad since I am still waiting to get into the other clinic to get a prescription to do mail order).

I used my Google Maps right away to get to the subway quickly and then to Union Station.  I followed the signs toward the Go bus exit.  There was an employee at the bottom of the stairs and I asked him how to get to the buses since it had been complicated getting to the subway.  He said across the street; I thought no problem.  I went out and went across the street and after walking a ways, realized it must be the wrong direction.  Went down another street, nope.  Saw a security guard and he pointed a different way.  I tried it and it was correct.  I messed up again though because, I thought the sign meant to go inside the building but that was for the Go train.  I walked all the way to the end and then back and went outside.  Found the bus!  The bus that was there went to Newmarket Station but not East Gwillembury where I was parked.  I took it anyway or I would have had to wait about 40 minutes for the next one.

I texted my husband to make sure he would be home for my daughter and then we worked out that he would bring her and they would drive me to the other station to pick up my car.  After we had worked out those details, the bus driver mentioned to those of us who had to go to East Gwillembury, that that bus would be along 5 minutes after dropping us off.  I had to decide whether to take the chance and just wait for it or get a drive.  I figured the bus would be late so I asked my husband to still come and get me.  I waited for what seemed like forever!  The bus did come and go!  Oh well, I know for next time to check schedules better and believe the bus driver.

I was at meltdown stage by the time I got home.  I had left at 8:30 in the morning to drop off Micah's iPad keyboard to her at school and then catch the bus.  I didn't get home until after 4:00.  I had gotten lost and gone back and forth to the hospital.  Now, I had to get the dogs out and get dinner both right away.  Not good.  I managed pretty well considering the day I had.  I didn't have a major meltdown but I also took some of my valium as soon as I got in so that I wouldn't.

I don't know how much I could have done differently to make the day go smoother but I managed to somehow get through it.  I didn't have a meltdown in the city so that was good.  Next trip, I will have to come up with a better plan but I also know a little better where I am going.

This picture and others are on items in my new Red Bubble store, just search my name in the store or click here.