Before I start on my story, some medical background. I am diagnosed with Asperger's Syndrome, a form of Autism, ADHD, Learning Disabilities, Anxiety Disorder, Chronic Anemia, seasonal Allergies and Asthma. So asking for help from the clinic and suppliers has been a bit tough for me.
After gradually increasing problems getting to sleep, waking up and feeling refreshed after sleeping, bouts of insomnia, increasing weight gain and twitchy pains in my legs, I went to a sleep clinic in 2007 to see whether I had Restless Leg Syndrome. Did a sleep study and went to the meeting after. The doctor was very distant; literally, the patient chair was a good pace from his desk and his assistants had to hand me papers from him. I received a few informative brochures and pamphlets with my official diagnostic circled from a list.
But he said they didn't find any sign of Restless Leg (turns out I have loose knee caps that's wearing down the cartilage in my knees), but they found moderate Sleep Apnea, with me having apnea episodes and waking up something like 33 times per hour, and told me that while there was a surgery for it, given my body structure, my best form of therapy would be C-PAP. I knew a little about Sleep Apnea, since a friend of mine online was (then) recently diagnosed with severe Sleep Apnea and is struggling with problems with her heart.
So I agreed to the C-PAP. I went in for another sleep study, this time to get my prescription, and the diagnosis was supposed to have been faxed to my family doctor, but he never got it. At one point, they gave me a slip with my prescription, so I gave a photocopy of that to him.
The Sleep Clinic works with a supplier named Sleep Management Group, and they called me up for me to try out my C-PAP and mask for a month. They work on a month-long trial. Being autistic, I was nervous and a little overwhelmed going in for fitting, but picked out a Mirage Liberty mask since I don't like my eye-sight being obstructed and I'm a mouth-breather. I'll often switch from nose breathing to mouth breathing throughout a night, and especially if it's stuffy-nose season for me.
Getting used to the C-PAP and mask was hard. Being autistic and sensitive to touch, it was just plain weird. I was also disappointed that I couldn't easily sleep in my favorite position with the mask on, on my belly, which leads to some nights where I just can't get comfortable. I also noticed for the first week or so that I would take off the mask in my sleep.
But I persisted in using it, and got used to it. Now I feel healthier and more refreshed.
I had issues with my insurance company, who wouldn't pay for it, so my parents did. About a year ago, I was approved for the Ontario Disability Support Program, which doesn't pay for the C-PAP, but does pay for the "accessories" such as masks. So every six months I can get things like new mask cushions, and the ODSP paid for my Mirage Quattro mask. I decided to get this new mask, even though if not placed properly it'll pinch my sinuses, because when I'm sick the area around my nose breaks out, which makes the Liberty painful to wear.
And now I'm here, moving back to my hometown in Kingston, and so will be setting up supports there.
Edit on June 30, 2009: Recently, I got all the paperwork for intake at the sleep clinic in Kingston, which was a lot more than what I got at the sleep clinic here, from what I remember. I was suppose to send them back for the 19th of June, but apparently we didn't put enough stamps on the envelope, so my mother took in the papers herself. She also went in to change the date of my first intake appointment to August, when I'd actually be in town. By the way, my mother has written permission to speak on my behalf, so she can do this.
Apparently the Kingston clinic is in a nice house down the street from one of the two hospitals (seriously, in walking distance to the emerg). It's not marked with any sign, but inside is supposed to be very nice. According to my mom, there are fabric paintings and artwork, including a fabric painting of CAT scans of a schizophrenic patient having an episode. Also, according to my mom, the staff is friendly, helpful and very understanding. She had no problems rescheduling my appointment and was even shown around the offices.
So, the new clinic is sounding nice.