Although the Ontario Government agreed to open a clinic for those with EDS following the statement we made at Queen's park, there was still more for us to do at the legislature. The clinic will will have specialists that play an advisory role to the rest of the doctors, and there's so much research that still needs to be done. They said they will start research of their own later down the line. They've only found 50% of the genes that cause the Hypermobility Type of EDs. They won't be able to start working on a cure until those genes are tracked down. Article:
http://www.ctvnews.ca/health/ontario-to-set-up-clinic-for-people-with-rare-disease-eds-1.2797357#_gus&_gucid=&_gup=Facebook&_gsc=kcXsPEK
In the February of 2016 I suddenly started throwing up very frequently. It was violent, and it happened many times a day. We assumed the cause was medication related but I'm on just as many medications now and only throw up about once a month. For awhile we ignored this, but then one day there was blood in the vomit. This can be very serious, so I went to a Gastroenterologist and they did a gastroscopy, which means they put a microscope down my stomach. They also did yet another ultrasound. I was knocked out for this, and I felt no pain for about 15 minutes after I woke up. I had my dad take a video to remember the moment, which I will post below. That was the fourth time since 2009 where I felt no pain. The gastroscopy found a a mallory-weiss tear in my esophagus, and the bleeding from that is what showed up in the vomit. My stomach hurt for quite awhile after, but the medication I was given eventually did their job.
Eventually the vomiting came back just as violently as before but it had all been blood free. I almost couldn't go be a councilor at the camp which I had applied for months before. I had to lower my medications to avoid another esophageal tear, which brought my sleeping issues back to the forefront. At the same time the Canadian Government began releasing Cannabis oil through some of their licensed producers, so I started buying that instead of getting edibles at the dispensary. My cannabis specialist doctor has quite the grudge against dispensaries, as they steal business from him, someone who actually got regulated the proper way. He also warned their products are far less consistent and you don't really know what they put in there. Quitting dispensaries was fine by me, for I no longer had to go the sketchiest parts of downtown to get my hookup.
It was around this time that I took up a new hobby: streaming video games. I had finally graduated high school and I was feeling pretty well yet still had to wait a little longer to move out towards my friends again in the fall. Streaming gave me some human interaction and entertainment. It was a challenge too, because you have to be constantly entertaining for people to subscribe to your channel and stay interested. Since coming to university I had no time for it, and when I stopped I had 57 followers. I'm told this is a good amount for only having a couple of months. One of them even reached out to me to have me voice-act in a machinima series they were working on on YouTube. We also co-streamed together, someone I'd never actually met. There were also some weirdos, like a 12 year old that got upset when I wouldn't let him stream with me. You certainly meet some interesting people, and establishing a consistent audience can be a lot of fun. I fondly remember it as a mentally stimulating hobby.
When we went back to Mexico in 2015 something weird started happening to me. First I would feel hotness in an area of my body, then the skin turns into red dots, then it starts hurting in a strange combination of stinging, burning and itching all over an area, usually my arms or legs. It would sometimes never happen over an entire month, and in other instances it happens almost every day. We still have absolutely no theories on this except for again just blaming it on the large amounts of medication I'm on. It was in this time period that my medication situation became more out of control than it's ever been. A few years ago I was taking 200 mg of the sleeping pill quetiapine. This was enough to both knock me out and keep me asleep. Now, in 2016, I take 2000 quetiapine and yet that often even that isn't enough to knock me out. This isn't a sustainable situation, because taking such huge amounts of quetiapine puts one at risk for diabetes. An ordinary person taking a normal dose of quetiapine has a 5% chance of getting diabetes, according to my sleep doctor. No one can say what my risk is, because no one has seen someone taking this much of the drug. This is why I was desperate for alternatives. I looked online to find any new data on people with EDS solving their sleeping issues. I found a bunch of new medications to try, and an EDS sleep specialist doctor to contact. Unfortunately he lives in the U.S. We emailed him and hoped for the best. We found him through a presentation where he explained that many people with EDS have trouble sleeping due to adrenaline rushes. He recommended beta blockers to solve this problem. I went to my family doctor to discuss trying this out.
http://ehlers-danlos.com/2014-
No comments:
Post a Comment