I tried replacing zopiclone with zolpidem and codeine with nucynta but they simply don't work as well. The nucynta also suppressed my breathing more than codeine ever did and caused more stomach problems. Still, enduring the withdrawals and discomfort wasn't totally pointless. I gave my body a break from my more helpful meds to reduce tolerance at least somewhat. I've now switched back to the same meds that I've had for years and they seem to be working better, for the time-being at least. Since the new pills weren't very effective I have been figuring out when I should to go to bed with a simple test. I stop vaping and reading, lie down in bed, and close my eyes. If I struggle to keep my eyes from fluttering shut that means I have a good shot of falling asleep soon. If I open them without issue then that means I screwed up and tried going to sleep too early. I've also noticed that on bad days I would never do something like sing along to the radio in the car. If you see me doing that there's pretty much 0% that I'm extremely fatigued on that day. As for my over-medication crisis continuing unabated I am of the opinion that I'd rather live to 70 with mostly good days than 100 with mostly bad days. Even so, I sometimes worry I'm on the same path as Micheal Jackson. If you didn't know, many doctors think he had some form of EDS. He was obviously very high functioning and so when his pain got worse he demanded more and more medication to maintain functioning enough to be able to preform concerts and whatnot. It also explains his flexibility/hyper-mobility.
I had to go to the dentist for a regular checkup though I have been experiencing gum pain. It became pretty obvious why. Upon examination they told me I have 32 bleeding spots in my mouth. You're supposed to have none or just a few maximum. It could have something due to with people with EDS bleeding more easily. My blog notes say they cleaned my mouth with some sort of laser but I should give a disclaimer that I don't remember that part just in case as it was some time ago.
No matter how you look at it, 2017 was a fucked up summer for me. I went to camp again for 3 weeks and shit started going wrong before I even got there. I was on the highway passing through a small town. Already that's something I'm not used to. On the highways I always go on there are no intersections where you have to slam on the brakes to turn right, there's just ramps meant for exiting. There was actually a ramp for exiting right turns on this highway but the driver in front of me chose not to take the ramp which is there so you can exit without having to slam on the brakes to slow down fast enough. Instead he did slam on his brakes and turned out of the intersection. I was paying attention and not speeding but I might have been driving closer to his car than I should have because I wasn't expecting any sudden right turns. As a result I hit the driver in front of me from behind. The damage to his car was almost inconsequential, one nearly invisible dent. My car on the other hand will cost thousands to repair... It functions fine but the front is very messed up. A witness also got out of their car and told me it wasn't my fault because the other guy didn't take the ramp and was speeding which is why he needed to slam on his brakes so hard. The witness told me to call the police so I did. This was a big mistake. The police said yeah the other guy should have taken the ramp but it wasn't illegal not to. I knew I was screwed when the cop and the other driver were laughing and reminiscing about something. I realized that since I was in a tiny town everyone that lived there knew each other, including the officer. I was sitting on the grass waiting for the police to write their report and he walked over to me and told me stand up. He seemed to think I was being disrespectful but I was just resting my legs. Still, he told me I was getting off easy so I didn't say anything. He said he could charge me with distracted driving (which is bullshit) but charged me with driving too close (which is fair.) It got worse though, because I think the officer didn't realize I didn't have my full G yet.
As I found out 3 weeks later, if you get charged and don't have your G then your license gets automatically suspended for a month. I also got a $310 fine and 4 demerit points even though my damage was 1000 times worse than the other guy's.The demerit points go away after 2 years. The repair cost alone isn't "getting off easy," it's so expensive! If I knew about the incoming suspension I wouldn't have plead guilty. I would have gone to court explaining the aggravating circumstances and how much losing my license in August would screw me over. The reason I went to camp for only 3 weeks instead of 5 is that I decided to set aside August to see all my doctors before the university semester starts again. I have a lot of doctors and most are very far away downtown. Now I'll have to uber to them all which on its own will be very expensive. I know a judge I met through my high school field trip that said to ask him if I ever need any help, I would've asked him to write a letter or something. I have no prior charges so I think there would have been a decent chance that my suspension would have been cancelled or postponed on compassionate grounds because of how disproportionate the punishment is in my case. Too late for that now, so I guess I'll simply have to contend with "getting off easy"...
Friday, July 28, 2017
Friday, June 16, 2017
A Sleep System
Click link here ^
This is a kid waking up to a new life following surgery. After seeing something like this I can't help but be hopeful I will one day be in this situation. I wouldn't be my honest self if I didn't admit I also have to suppress envious feelings of those who have the ability to fix their chronic pain by having a surgery, it would make things a lot simpler. Whenever I think about a day where my pain ends I don't know what to do with myself so I'll often just bury my head in my arms lying on my desk while just sitting there for a few minutes to bring myself back to the present. I know with a condition like mine treatment even in the distant future won't be an instantaneous thing. Medications will slowly improve, there will be stronger pills with less dangerous side effects. As we learn more about EDS it's likely more surgical options will open up. I won't wake up one day with all my pain gone but I have to believe I'll get there in an extremely gradual process. I have already experienced a tiny fraction of this outcome a couple of times. Whenever I'm given general anesthesia I wake up free of pain which then slowly returned over the next 15 minutes. That's a moment to cherish so I still have a video someone took of me pain free floating around Facebook somewhere. You can't imagine lying there in bliss knowing it's all going to come crashing down again very quickly. I often wonder if it's better to have your pain taken away for a few minutes only for it to come back again rather than the pain being constant. Either way, I think it's an important experience; it reminds me that there are even now ways of making pain go away. I just have to try and hold out until they can do so permanently
This is a conversation I had with a friend explaining the sleep system I developed to maximize my chances of having a decent night's sleep:
The pain spike was pretty unbearable on its own but it was made even worse from unfortunate circumstances. I had sinusitis since for half a year which was finally starting to clear up. The headaches were absolutely torturous, they got worse when you lean forward or strain to do anything. The doctor has said mine was initially very severe. We tried several nasal sprays, each one stronger than the last. It could just be coincidence but the strongest spray he had might have helped a lot. Went in for a nasal scan a shortly aferward and there was just a bit of gunk left in my head but it's not infected and is shrinking. Then there's the opioid issue. I had been taking codeine every day for half a year so the tolerance very likely made it useless by that point. We got the replacement as I mentioned in the last post and would have taken only one codeine pill instead of two to minimize withdrawal symptoms. The problem is I noticed the new pain pills were making breathing rather laborious so we couldn't risk taking the codeine because I'd be screwed if I stopped breathing in the middle of then night. This resulted in me having to stop codeine cold turkey while the 9/10 pain spike was happening so it was quite the recipe for disaster. I'm glad that even on on my absolute worst days I don't destroy anything. I don't smash stuff as an outlet, I expend pent up energy by doing harmless things like slamming my sweater onto my bed or pounding on my desk. I was still up until 4 am because of the pain even though I was exhausted from a crap sleep the previous night. Blessedly my pain is returning to its usual 8/10 levels and pain spikes such as the one pictured a few days ago only seem to happen a couple of times a year. It's not like I'm in that state every time I have to cancel plans. It's simply far more uncomfortable than people might realize.
Wednesday, June 14, 2017
The Bad Days
A quote from someone else with EDS:
The sinusitis continued to stubbornly refuse to go away. I went back to the nose doctor several times and each time he gave me a stronger spray. After using the strongest nasal spray he had for a few days I noticed some improvements in the headache but I was still constantly sneezing. Eventually I had a nasal scan done to get a better look at what's going on. My sleep doctor mentioned that he too suffered from Sinusitis while he himself also has a chronic pain condition. Despite that he said the sinusitis headaches were one of the most uncomfortable experiences of his life.
It's become a rarity but on certain occasions someone tries to venture themselves as an inspiration for me by bragging about their own medical achievements, especially relative to mine. A relative called me and said I should be strong like them. They like to remind me how old they are with the implication being they are way older yet doing better than I am. He even said he's not trying to belittle me but that's exactly what he was doing. Funnily enough, as part of the boasting, they told me I have"no idea how many pills," he has to take. I'm pretty certain I take more but it shouldn't be a competition. I take up to 20 per night. When I mentioned I had just woken up they told me I "can't just lie in bell and waste the day away," without having the slightest clue what was going on at the time. That day was actually a massive improvement, I had woken up at 10:15 am. I went from waking up at 4:30 pm to 1 pm and then 10:15 am in the span of 3 days. It was torturous because lack of sleep worsens my pain. I had to put up with the same kind of crap from others before I got my diagnosis but I refused to stand for that any longer. Some people just really don't get it.
My dad and I talked to the doctors at the nascent EDS clinic and they expressed interest in using me for studies to find out why medication hardly affects me. Even Xyrem, the synthetic version of the date rape drug, had absolutely no sedating effect. It's supposed to knock you out cold in 60 seconds. The clinic was still in the patient acquisition phase and they expected to begin research in August. Unfortunately they informed me that two out of three of my referrals will have a waiting list of 6-8 months. Only the least important one will go through any time soon.
I also saw my neurologist for the first time in half a year who prescribed a topical analgesic cream but my pain is far too deep for that since its musclo-skeletal. It's not my bones or muscles that hurt, it's the tissue that connects them together. So the worst of my pain goes down in a line at the back of my legs which on top of aching also feels like there are little knives all along in each tissue cell of that line. This is because people with EDS often have micro-tears on a microscopic level. The medical marijuana helps me ignore it but using it every night leads to funny scenarios like my vaporizer screen falling off causing me to suck in a mouthful of herb. Tasted as gross at it sounds.
I'm starting to realize that a couple of times a year I seem to get some form of a massive pain spike for no particular reason, just part of the fluctuations with EDS but to an insane degree. My pain is really bad at the best of times so when I say a massive pain spike I'm talking 9/10 on the pain scale or higher. 10 is the highest pain I can imagine, like being doused in gasoline and ignited. 9.5 would be some CIA agent methodically torturing me. A few days ago my pain was at 9. It's usually 7.75-8. It resulted in nights like this.
Some of you might be a bit shocked to see this but should you really be? Those days where we had plans but I had to cancel, those days you noticed I didn't make it to class, those days I seem more irritable than usual over Facebook are days I'm in incredible pain and so I shut myself in my room and stay there until it passes. This means only my immediate family truly knows how bad my worst days are. While I have more bad nights than good thankfully the situation the picture depicts happens around twice a year. This isn't very reassuring though because every time it happens I'm terrified it will stay that way and never get back to 'normal.' It's not particularly likely but not unheard of in people with EDS. This is after years of my pain tolerance continuing to rise so I'm confident if someone healthy were to suddenly have what I consider a 9/10 level of pain they'd be screaming rather than crying. The whole ordeal has left me a bit depressed because when the pain becomes that unbearable I inevitably begin to develop suicidal ideation again. The pain is starting to recede so those thoughts are going away but I have had a rude reminder of my own mortality. I understand that there are many things to try before ever going through with that. I can try stronger unorthodox painkillers again until it passes, I can go to the emergency room, hell I'd even try amputating my own damn legs if it is indeed micro-tears causing my pain. I think most would agree it's better to be in a wheelchair than dead.
My neurologist wants to try ketamine infusions when I get back to camp. Point is, there are still things left to try. My family doctor prescribed an opoioid called nucynta which is stronger than tramadol but weaker than morphine. It's going to replace codeine because since I'd been taking codeine every day for almost a year the tolerance has probably made it useless. Jury is still out on how useful it will prove to be. I will have to be very careful though because it can cause life threatening serotonin syndrome which I've already experienced two too many times as well as dangerous respiration suppression. Of course, once again, I wasn't warned about these things from the doctors. I looked it up online and confirmed with them after. It will be up to me to monitor any change in symptoms.
"I’m faking being sick? You
must be confused because what I’m actually doing is faking being well. I don’t
always talk about all my symptoms, I don’t always admit when I'm not feeling
well and I often put on a happy face because it’s just easier that way. Any
idiot can fake being sick, it takes real talent to fake being well."
"Insomnia sufferers look on the bright side, only 3 more sleeps till Christmas."
The sinusitis continued to stubbornly refuse to go away. I went back to the nose doctor several times and each time he gave me a stronger spray. After using the strongest nasal spray he had for a few days I noticed some improvements in the headache but I was still constantly sneezing. Eventually I had a nasal scan done to get a better look at what's going on. My sleep doctor mentioned that he too suffered from Sinusitis while he himself also has a chronic pain condition. Despite that he said the sinusitis headaches were one of the most uncomfortable experiences of his life.
It's become a rarity but on certain occasions someone tries to venture themselves as an inspiration for me by bragging about their own medical achievements, especially relative to mine. A relative called me and said I should be strong like them. They like to remind me how old they are with the implication being they are way older yet doing better than I am. He even said he's not trying to belittle me but that's exactly what he was doing. Funnily enough, as part of the boasting, they told me I have"no idea how many pills," he has to take. I'm pretty certain I take more but it shouldn't be a competition. I take up to 20 per night. When I mentioned I had just woken up they told me I "can't just lie in bell and waste the day away," without having the slightest clue what was going on at the time. That day was actually a massive improvement, I had woken up at 10:15 am. I went from waking up at 4:30 pm to 1 pm and then 10:15 am in the span of 3 days. It was torturous because lack of sleep worsens my pain. I had to put up with the same kind of crap from others before I got my diagnosis but I refused to stand for that any longer. Some people just really don't get it.
My dad and I talked to the doctors at the nascent EDS clinic and they expressed interest in using me for studies to find out why medication hardly affects me. Even Xyrem, the synthetic version of the date rape drug, had absolutely no sedating effect. It's supposed to knock you out cold in 60 seconds. The clinic was still in the patient acquisition phase and they expected to begin research in August. Unfortunately they informed me that two out of three of my referrals will have a waiting list of 6-8 months. Only the least important one will go through any time soon.
I also saw my neurologist for the first time in half a year who prescribed a topical analgesic cream but my pain is far too deep for that since its musclo-skeletal. It's not my bones or muscles that hurt, it's the tissue that connects them together. So the worst of my pain goes down in a line at the back of my legs which on top of aching also feels like there are little knives all along in each tissue cell of that line. This is because people with EDS often have micro-tears on a microscopic level. The medical marijuana helps me ignore it but using it every night leads to funny scenarios like my vaporizer screen falling off causing me to suck in a mouthful of herb. Tasted as gross at it sounds.
I'm starting to realize that a couple of times a year I seem to get some form of a massive pain spike for no particular reason, just part of the fluctuations with EDS but to an insane degree. My pain is really bad at the best of times so when I say a massive pain spike I'm talking 9/10 on the pain scale or higher. 10 is the highest pain I can imagine, like being doused in gasoline and ignited. 9.5 would be some CIA agent methodically torturing me. A few days ago my pain was at 9. It's usually 7.75-8. It resulted in nights like this.
Some of you might be a bit shocked to see this but should you really be? Those days where we had plans but I had to cancel, those days you noticed I didn't make it to class, those days I seem more irritable than usual over Facebook are days I'm in incredible pain and so I shut myself in my room and stay there until it passes. This means only my immediate family truly knows how bad my worst days are. While I have more bad nights than good thankfully the situation the picture depicts happens around twice a year. This isn't very reassuring though because every time it happens I'm terrified it will stay that way and never get back to 'normal.' It's not particularly likely but not unheard of in people with EDS. This is after years of my pain tolerance continuing to rise so I'm confident if someone healthy were to suddenly have what I consider a 9/10 level of pain they'd be screaming rather than crying. The whole ordeal has left me a bit depressed because when the pain becomes that unbearable I inevitably begin to develop suicidal ideation again. The pain is starting to recede so those thoughts are going away but I have had a rude reminder of my own mortality. I understand that there are many things to try before ever going through with that. I can try stronger unorthodox painkillers again until it passes, I can go to the emergency room, hell I'd even try amputating my own damn legs if it is indeed micro-tears causing my pain. I think most would agree it's better to be in a wheelchair than dead.
My neurologist wants to try ketamine infusions when I get back to camp. Point is, there are still things left to try. My family doctor prescribed an opoioid called nucynta which is stronger than tramadol but weaker than morphine. It's going to replace codeine because since I'd been taking codeine every day for almost a year the tolerance has probably made it useless. Jury is still out on how useful it will prove to be. I will have to be very careful though because it can cause life threatening serotonin syndrome which I've already experienced two too many times as well as dangerous respiration suppression. Of course, once again, I wasn't warned about these things from the doctors. I looked it up online and confirmed with them after. It will be up to me to monitor any change in symptoms.
Wednesday, May 3, 2017
Sinusitis Sucks
Almost immediately after realizing I was actually happy again I was struck down with a bout of sinusitis. It started off as your usual cold and was so insignificant to compared to my other discomforts that I ignored it and expected it to clear up on its own rather soon. It didn't. I had it for almost 6 months. Then it got worse, comparable to a flu but being very sick when you have a chronic illness is a whole new ball game of hell. The worst part is the way being sick affects my regular chronic pain. It makes it far worse. Exhaustion and bad news and traumatic events can bring forth the occasional tears but it's very rare that my pain alone makes me break down simply because it's so constant. So if pain is making me lie awake at night crying you know it's truly unbearable. On a 10 pain scale it was easily a 9. It was so bad I couldn't stand unsupported. I took the maximum number of pills I could without risking acute danger and that still wasn't enough to put me to sleep through the pain. They eventually simply wore off. I was so tired it felt like I had been awake for days except I still wasn't sleepy because of effects of the pain. I had codeine on hand but since I'd been taking it daily for so long it had very little effect due to tolerance. Then there was the headaches. They would get excruciating whenever I strained to do anything or leaned forward. I was constantly spitting crap up from my throat and typical cold symptoms came and went. The Guelph doctor gave me antibiotics but they didn't help.
If you want the opinion of an observer of my good and bad days simply ask my dad or sister about our trip to the dentist. I had an awful sleep and couldn't sleep in to make up for it because of the appointment. My dad had to drive us because of my exhaustion, I was essentially an irritable zombie. I figure I'll feel better the next day because of my alternating days sleep quality pattern. This is why I need to know about plans in advance. I will purposefully wake up early the day and feel awful the day before an event to ensure I sleep wall that night. Despite my debilitated state I couldn't sleep well that night either because the pain is severe enough to keep you up for what feels like indefinitely. Even just last night I stayed up until 5 am to see if it allowed me to fall asleep while taking less pills. It didn't. Now that summer break has begun I have been focusing on taking less medications at the expense of much of my functioning and results have varied. Staying up until 5 am hardly made a difference, it allowed me to take 1800 quetiapine instead of 1950. My most successful night so far involved taking 1650 quetiapine and half the amount of zopiclone. I'm just doing what I can to minimize the risk of diabetes developing due to quetiapien overdose. I'm just hoping that my situation will improve once the sinusitis is gone. I have trouble differentiating between having a headache and being sleepy so I would take a couple of tylenol before bed which has been moderately effective.
I arrived back in Toronto and the sinusitis still hadn't improved so I went to see a nose doctor. He examined me and said I definitely still had sinusitis and that it was very severe. He said the inside of my nose and throat were extremely red. He gave a prescription of a stronger antibiotic called Biaxin. I wanted to know about any potential side effects so I looked it up when I got home. That's when I noticed something incredibly alarming. Under the 'drug interactions' section it warned not to take it with... maybe you guessed it... quetiapine. Yes, the very same medication that I take a dose of up to 2300 when the maximum dose is supposed to be 300. I don't even want to think what might have happened if I didn't notice that. This wasn't the first time something like this has happened. Some of you might remember my bout with serotonin syndrome back in what I believe was 2014. I had suddenly started to get really sick and looked up my symptoms online. We sent a message to my neurologist asking about my concerns and lo and behold he said I needed to stop tramadol (an opioid) immediately because it was interacting with mirtazapine; both drugs contain high levels of serotonin. Serotonin syndrome is no joke, if unresolved it will likely drive you crazy and then kill you. I just felt the very beginning of that danger and knew something was wrong. That was rather frightening and then I had to deal with tramadol opioid withdrawal while at camp. Even after this happened I suffered yet another bout of serotonin syndrome from the interactions of a different medication. Here are a list of symptoms, I put the ones I experienced in bold:
If you want the opinion of an observer of my good and bad days simply ask my dad or sister about our trip to the dentist. I had an awful sleep and couldn't sleep in to make up for it because of the appointment. My dad had to drive us because of my exhaustion, I was essentially an irritable zombie. I figure I'll feel better the next day because of my alternating days sleep quality pattern. This is why I need to know about plans in advance. I will purposefully wake up early the day and feel awful the day before an event to ensure I sleep wall that night. Despite my debilitated state I couldn't sleep well that night either because the pain is severe enough to keep you up for what feels like indefinitely. Even just last night I stayed up until 5 am to see if it allowed me to fall asleep while taking less pills. It didn't. Now that summer break has begun I have been focusing on taking less medications at the expense of much of my functioning and results have varied. Staying up until 5 am hardly made a difference, it allowed me to take 1800 quetiapine instead of 1950. My most successful night so far involved taking 1650 quetiapine and half the amount of zopiclone. I'm just doing what I can to minimize the risk of diabetes developing due to quetiapien overdose. I'm just hoping that my situation will improve once the sinusitis is gone. I have trouble differentiating between having a headache and being sleepy so I would take a couple of tylenol before bed which has been moderately effective.
I arrived back in Toronto and the sinusitis still hadn't improved so I went to see a nose doctor. He examined me and said I definitely still had sinusitis and that it was very severe. He said the inside of my nose and throat were extremely red. He gave a prescription of a stronger antibiotic called Biaxin. I wanted to know about any potential side effects so I looked it up when I got home. That's when I noticed something incredibly alarming. Under the 'drug interactions' section it warned not to take it with... maybe you guessed it... quetiapine. Yes, the very same medication that I take a dose of up to 2300 when the maximum dose is supposed to be 300. I don't even want to think what might have happened if I didn't notice that. This wasn't the first time something like this has happened. Some of you might remember my bout with serotonin syndrome back in what I believe was 2014. I had suddenly started to get really sick and looked up my symptoms online. We sent a message to my neurologist asking about my concerns and lo and behold he said I needed to stop tramadol (an opioid) immediately because it was interacting with mirtazapine; both drugs contain high levels of serotonin. Serotonin syndrome is no joke, if unresolved it will likely drive you crazy and then kill you. I just felt the very beginning of that danger and knew something was wrong. That was rather frightening and then I had to deal with tramadol opioid withdrawal while at camp. Even after this happened I suffered yet another bout of serotonin syndrome from the interactions of a different medication. Here are a list of symptoms, I put the ones I experienced in bold:
- Cognitive effects: headache, agitation, hypomania, mental
confusion, hallucinations, coma
- Autonomic effects: shivering, sweating, hyperthermia, vasoconstriction, tachycardia, nausea, diarrhea.
- Somatic effects: myoclonus (muscle
twitching), hyperreflexia (manifested
by clonus), tremor.
To prevent these situations my brother who is a doctor recommended I mention my copious amount of medication every time I see another doctor. I told my dad about the quetiapine danger who then told my doctor who then switched antibiotics again to moxifloxacin. I'm still waiting for that to kick in. I'm proud of myself because despite the sinusitis I started working out again for the first time in months, even doing two sessions in one day and then writing a blog post. I had slept well the night before which just shows how much more I'd be capable of if every night was a good night like that. I still looked fairly strong even after not working out for months. I theorized that I don't lose muscle progress because my muscles have to work overtime to make up for my bad joints. This causes pain and is the main source of fatigue in people with EDS. Perhaps this also prevents atrophy even after extended disuse. My tone won't improve if I'm inactive but it also seems like it won't revert the progress I've gained.
It was finally time for the appointment that it felt like I'd been waiting forever for, that being the one at the brand new EDS clinic I helped open. Being one of the first patients at the clinic seemed like a fair reward for my efforts. The appointment lasted almost 3 hours. We went over my medical history for an hour, they examined my physical condition for an hour, and then I asked them questions for an hour. They told me I should ask my neurologist about doing pharmacokinetics testing which could cost thousands of dollars. It would show how I metabolize certain pills. The clinic is more of a decentralized institution that sends you to the doctors you need rather than having all the doctors there themselves. They found that I have orthostatic hypotension, which is what causes me to be very dizzy after standing up. They were the first to tell me that I have dysautonomia meaning my autonomic nervous system isn't functioning properly. That was one of the few presentations I thought I'd been spared. To address this the doctor told me I need to see a cardiolagist in Hamilton who is familiar with EDS. I need to get an ECG every 5 years to ensure no prolapse and an eye exam every two years to make sure I don't experience a detached retina, which are both associated with EDS. I'll also be seeing a new sleep doctor. He's not an EDS specialist like I hoped but he's at least familiar with the disease in contrast to my current sleep doctor who had to look it up when I told him my diagnosis.I told them about the stinging hot rashes I started getting a couple of years ago and so they suspect I might have mast cell disease, an autoimmune disorder that is also associated with EDS. I've still heard nothing from the EDS experienced sleep specialist in Washington. I was put on his wait-list for a year. At the clinic I received validation about my complaints about my pinky fingers. I would always show people how it only can get locked into 2 positions, I have no freedom of movement with my pinky fingers. It seemed like they'd never really seen something like that before and they told me it was happening because my tendon keeps sliding over my bone. They found lots of deformities but mostly talked about them to each other in medical jargon. Those that have had the pleasure of seeing me shirtless probably has noticed I have a bump in the middle of my chest where my bone is poking out a bit and I had winged shoulders that pop out in my back. In the end they told me there's absolutely no doubt I have EDS and that they will keep in touch as they start to set up medication trials and case studies.- Cognitive effects: headache, agitation, hypomania, mental
confusion, hallucinations, coma
Professor Problems
The University of Guelph have given me many accommodations, but even this can cause problems of its own. They allowed me to move the time of my history exam to the late afternoon so I could sleep in as much as I needed. When I sat down and looked at the exam I realized I couldn't differentiate between the history knowledge I had beforehand and the new lessons learned from the class. If I was writing with the class where the professor was present I would have asked for guidance on how to approach the questions which required me to explain the significance and meaning of a bunch of history terms. My previous experiences in that class involved me losing marks for having a technically correct answer but one without relating it back to the class lectures. I wasn't sure if I should simply write everything I knew about the different topics or if I should really just do my best to articulate what we learned in class. I chose to write everything I knew on each topic. As I would later find out, this was the wrong decision.
At the end of that semester I had an 80 in my politics class and a 79 in the history one. If you have an average of 80+ you make the dean's list. I went to see the history professor during office hours to see if there were any marks I could argue for to bump up my average. As soon as I walked in the door I realized she was quite angry with me. She immediately said there would be no negotiations. She explained she took a lot of marks away from my answers for writing too much. She was offended because in her view I had abused the extra time Student Accessibility Services (SAS) gave me. I hadn't thought of it that way at all, I just wasn't sure what to do and couldn't ask the professor for direction. I see her point though, so I apologized and she said I'm a great and engaged student and that she hopes to see me in her future classes. The SAS accommodations were to supposed to help me but due to my mistake it actually hindered me on this exam.
In the next semester I also ran afoul of a different history professor. My quality of sleep seems to follow a pattern of alternating days. I sleep in and feel great but then have trouble sleeping that night so the next day I feel super crappy all day and have an easy time falling asleep and then sleep in again to feel better. I mention this because it turned out my 2 exams were booked in 2 consecutive days. I brought the exam change request form to my professor and he gave his signature but left the date blank. I thought that meant I can select the date myself as long as it's before the exam deadline. This was done months in advance of the final exam. A few days before the exam date, the SAS people asked my professor for a copy of the exam which they will then give to me to write. When my professor saw the date I chose he told SAS that he never agreed to that date and then cancelled my exam booking. For some reason he thought I had just recently filled out the form and so told me this has to be done 3 weeks in advance. I did it months in advance, he's the one who cancelled it! I needed that booking so SAS talked to him and explained what actually happened. He then said he never had any problem with me changing the date just that he needed to know because he didn't want to me to be able to cheat by asking my classmates what was on the exam. He needed to get a copy of an older exam to give to SAS. He was a jerk to me from the start of the semester, I think he wasn't convinced of my illness until my SAS adviser contacted him. I always have to wonder if maybe he saw me on my bike and so assumed I was faking. It wouldn't be the first time.
If I was healthy then I wouldn't have written the exam without the professor being around and wouldn't have needed to change the date of my other exam. My illness indirectly screwed me over academically for my first year of university by putting me in situations where I can easily make mistakes. Many lessons have been learned regarding how to deal with professors and SAS staff. Some are as simple as checking ratemyproffesor, all the warning signs were there. I realized the only people who take this history of science course are the engineers who have to take it as a required credit. Literally about 95% of the class was engineers. This guy's exams caused several people to leave the midterm room crying within the first 10 minutes of the exam. Forcing engineers to write that many essays is cruel. His response was doing the exact same format as the final except with twice as much information. Who makes the entirety of a history exam essays? Literally the entire thing was essay questions. Fun times. I fare much better in my politics classes. I bonded with that professor over the fact we both have joint issues and we've spent hours talking politics outside class. I won't talk about his political beliefs but we see eye to eye on a lot of things. I just hope my sleep situation improves by the next semester because as of now the next politics class he's teaching is too early for me. I answered the vast majority of the questions in that class and so in the middle of the semester I asked if I should wait to raise my hand to give others a chance. He said it's fine and that I should keep raising whenever I have something to contribute. Funnily enough in the very last lecture when I raised my hand he half jokingly said to give others a chance and chose someone else. He asked for volunteers to play a game of exam review jeopardy. I was one of the first to raise my hand but he purposefully chose others. Unfortunately none of them knew the answer to the very first question so I ended up doing it anyway. It was a trick question, where is yadda yadda yadda in the constitution? The answer was it isn't in the constitution at all. We spent a crazy amount of time on exam review because the class average of the midterm was 49%. Interestingly, no one cried that time.
At the end of that semester I had an 80 in my politics class and a 79 in the history one. If you have an average of 80+ you make the dean's list. I went to see the history professor during office hours to see if there were any marks I could argue for to bump up my average. As soon as I walked in the door I realized she was quite angry with me. She immediately said there would be no negotiations. She explained she took a lot of marks away from my answers for writing too much. She was offended because in her view I had abused the extra time Student Accessibility Services (SAS) gave me. I hadn't thought of it that way at all, I just wasn't sure what to do and couldn't ask the professor for direction. I see her point though, so I apologized and she said I'm a great and engaged student and that she hopes to see me in her future classes. The SAS accommodations were to supposed to help me but due to my mistake it actually hindered me on this exam.
In the next semester I also ran afoul of a different history professor. My quality of sleep seems to follow a pattern of alternating days. I sleep in and feel great but then have trouble sleeping that night so the next day I feel super crappy all day and have an easy time falling asleep and then sleep in again to feel better. I mention this because it turned out my 2 exams were booked in 2 consecutive days. I brought the exam change request form to my professor and he gave his signature but left the date blank. I thought that meant I can select the date myself as long as it's before the exam deadline. This was done months in advance of the final exam. A few days before the exam date, the SAS people asked my professor for a copy of the exam which they will then give to me to write. When my professor saw the date I chose he told SAS that he never agreed to that date and then cancelled my exam booking. For some reason he thought I had just recently filled out the form and so told me this has to be done 3 weeks in advance. I did it months in advance, he's the one who cancelled it! I needed that booking so SAS talked to him and explained what actually happened. He then said he never had any problem with me changing the date just that he needed to know because he didn't want to me to be able to cheat by asking my classmates what was on the exam. He needed to get a copy of an older exam to give to SAS. He was a jerk to me from the start of the semester, I think he wasn't convinced of my illness until my SAS adviser contacted him. I always have to wonder if maybe he saw me on my bike and so assumed I was faking. It wouldn't be the first time.
If I was healthy then I wouldn't have written the exam without the professor being around and wouldn't have needed to change the date of my other exam. My illness indirectly screwed me over academically for my first year of university by putting me in situations where I can easily make mistakes. Many lessons have been learned regarding how to deal with professors and SAS staff. Some are as simple as checking ratemyproffesor, all the warning signs were there. I realized the only people who take this history of science course are the engineers who have to take it as a required credit. Literally about 95% of the class was engineers. This guy's exams caused several people to leave the midterm room crying within the first 10 minutes of the exam. Forcing engineers to write that many essays is cruel. His response was doing the exact same format as the final except with twice as much information. Who makes the entirety of a history exam essays? Literally the entire thing was essay questions. Fun times. I fare much better in my politics classes. I bonded with that professor over the fact we both have joint issues and we've spent hours talking politics outside class. I won't talk about his political beliefs but we see eye to eye on a lot of things. I just hope my sleep situation improves by the next semester because as of now the next politics class he's teaching is too early for me. I answered the vast majority of the questions in that class and so in the middle of the semester I asked if I should wait to raise my hand to give others a chance. He said it's fine and that I should keep raising whenever I have something to contribute. Funnily enough in the very last lecture when I raised my hand he half jokingly said to give others a chance and chose someone else. He asked for volunteers to play a game of exam review jeopardy. I was one of the first to raise my hand but he purposefully chose others. Unfortunately none of them knew the answer to the very first question so I ended up doing it anyway. It was a trick question, where is yadda yadda yadda in the constitution? The answer was it isn't in the constitution at all. We spent a crazy amount of time on exam review because the class average of the midterm was 49%. Interestingly, no one cried that time.
Sunday, April 30, 2017
Mad World
Mad World
Out of all the songs that really get to me Mad World was both the first and the saddest. In 2010 when I was on the verge of attempting suicide it was the straw that broke the camels back. If I never came across the song for the first time that day it wouldn't have prevented that attempt but probably would have slightly postponed it. I was already 99.9% of the way there but the depressing song was the only thing I felt I could relate to since at that time since I was seen as having a mental illness rather than physical one and couldn't connect with others suffering like I can now since I never got a real diagnosis. I overdosed with the pills shortly after it ended and so now I of course associate the song with that traumatic event, meaning it can really affect me despite the fact I'm no longer miserable though I still of course have moments of feeling down.. Let me again acknowledge my interpretation of the song is not how the artist intended. Here is the link: https://www.youtube.com/watch?v=4N3N1MlvVc4
Out of all the songs that really get to me Mad World was both the first and the saddest. In 2010 when I was on the verge of attempting suicide it was the straw that broke the camels back. If I never came across the song for the first time that day it wouldn't have prevented that attempt but probably would have slightly postponed it. I was already 99.9% of the way there but the depressing song was the only thing I felt I could relate to since at that time since I was seen as having a mental illness rather than physical one and couldn't connect with others suffering like I can now since I never got a real diagnosis. I overdosed with the pills shortly after it ended and so now I of course associate the song with that traumatic event, meaning it can really affect me despite the fact I'm no longer miserable though I still of course have moments of feeling down.. Let me again acknowledge my interpretation of the song is not how the artist intended. Here is the link: https://www.youtube.com/watch?v=4N3N1MlvVc4
All around me are familiar faces, Worn out places,
worn out faces: This makes me think about the constant unproductive
doctor appointments and the scowl of my teachers when neither
understand what I was going through. You see the same unhelpful and
accusatory people that were meant to help and support you telling you to try
harder.
Bright and early for their daily races, Going nowhere, going nowhere: I was not on any effective medication at this point, so my insomnia was as bad as it had ever been. I forced myself to get to class, a monumental effort when you are that exhausted and in pain. I then fall asleep in those classes; I was bright and early for the daily races that were going nowhere. On the days I wasn't able to get out of bed, my family resorted to dipping my feet in baggies of water filled with ice to wake me up. It got me up and then I of course promptly fell asleep in class again. When I was on morphine I attended more classes but couldn't absorb any of the information, going nowhere.
Their tears are filling up their glasses, No expression, no expression: Tears filling up their glasses is pretty self-explanatory. Lots of tears were shed. Then the morphine dulled my mind and made me apathetic, while also hardly improving my pain. I was zombified, having no expression.
Hide my head I want to drown my sorrow, No tomorrow, no tomorrow: I wanted to drown my sorrow and ensure there will be no tomorrow by dying.
And I find it kinda funny, I find it kinda sad, The dreams in which I'm dying are the best I've ever had: When you're suicidal for an extended length of time you become unable to think about much else. It dominates your every thought and emotion, even when asleep. I would dream of dying, of the pain ending. And it wasn't a nightmare.
I find it hard to tell you, I find it hard to take, When people run in circles it's a very very
mad world, mad world: Exhaustion from a rare complicated medical issue can cause a vicious cycle. You need to be able to articulate what's wrong to get proper help, and the more exhausted you are the more crucial the help is. However, the more exhausted you are the harder it is to explain what's wrong. It certainly felt like the doctors and I were running in circles. Bouncing me off each other as each gave up trying to categorize me.
Children Waiting for the day they feel good, happy birthday happy birthday, Made to feel the way that every child should, sit and listen, sit and listen: My pain started when I was infected with swine flu a few days before my birthday. Instead of cerebrating my birthday as I normally would I was instead mourning another year of unresolved pain.
Went to school and I was very nervous, no one knew me, no one knew me, Hello teacher tell me what's my lesson? Look right through me, look right through me: Out of every time period in your life that chronic pain could start the very worst is probably right before high school, as it was in my case. Pain and exhaustion made me miss a lot of classes and when I was at school I was usually sleeping in the hallway or the classroom. I sorta stayed friends with the people I had been friends with in middle school but we hung out a lot less. The larger problems were the people I didn't know who just knew me as the weird kid who always missed class and slept in the hallway. Then when I was hospitalized I even drifted away from my old friends. My social life has only been rebuilt recently when I finally made it to Guelph. The teachers didn't understand what was going on as so just saw me as the kid who never paid attention in class and claimed he was sick but looked healthy. They refused to differentiate me from any other healthy student, looking right through me.
Bright and early for their daily races, Going nowhere, going nowhere: I was not on any effective medication at this point, so my insomnia was as bad as it had ever been. I forced myself to get to class, a monumental effort when you are that exhausted and in pain. I then fall asleep in those classes; I was bright and early for the daily races that were going nowhere. On the days I wasn't able to get out of bed, my family resorted to dipping my feet in baggies of water filled with ice to wake me up. It got me up and then I of course promptly fell asleep in class again. When I was on morphine I attended more classes but couldn't absorb any of the information, going nowhere.
Their tears are filling up their glasses, No expression, no expression: Tears filling up their glasses is pretty self-explanatory. Lots of tears were shed. Then the morphine dulled my mind and made me apathetic, while also hardly improving my pain. I was zombified, having no expression.
Hide my head I want to drown my sorrow, No tomorrow, no tomorrow: I wanted to drown my sorrow and ensure there will be no tomorrow by dying.
And I find it kinda funny, I find it kinda sad, The dreams in which I'm dying are the best I've ever had: When you're suicidal for an extended length of time you become unable to think about much else. It dominates your every thought and emotion, even when asleep. I would dream of dying, of the pain ending. And it wasn't a nightmare.
I find it hard to tell you, I find it hard to take, When people run in circles it's a very very
mad world, mad world: Exhaustion from a rare complicated medical issue can cause a vicious cycle. You need to be able to articulate what's wrong to get proper help, and the more exhausted you are the more crucial the help is. However, the more exhausted you are the harder it is to explain what's wrong. It certainly felt like the doctors and I were running in circles. Bouncing me off each other as each gave up trying to categorize me.
Children Waiting for the day they feel good, happy birthday happy birthday, Made to feel the way that every child should, sit and listen, sit and listen: My pain started when I was infected with swine flu a few days before my birthday. Instead of cerebrating my birthday as I normally would I was instead mourning another year of unresolved pain.
Went to school and I was very nervous, no one knew me, no one knew me, Hello teacher tell me what's my lesson? Look right through me, look right through me: Out of every time period in your life that chronic pain could start the very worst is probably right before high school, as it was in my case. Pain and exhaustion made me miss a lot of classes and when I was at school I was usually sleeping in the hallway or the classroom. I sorta stayed friends with the people I had been friends with in middle school but we hung out a lot less. The larger problems were the people I didn't know who just knew me as the weird kid who always missed class and slept in the hallway. Then when I was hospitalized I even drifted away from my old friends. My social life has only been rebuilt recently when I finally made it to Guelph. The teachers didn't understand what was going on as so just saw me as the kid who never paid attention in class and claimed he was sick but looked healthy. They refused to differentiate me from any other healthy student, looking right through me.
Monday, April 3, 2017
Therapeutic Music
Therapeutic Music
As
is common among those with disabilities, I find certain music quite
therapeutic. There are a few select songs that particularly evoke strong
emotions, for varying reasons. The thing that connects them all is that I find a way
to relate them to myself and my experiences. When I associate a specific song
with a certain memory listening to the song almost makes me relive it. This can
have both positive and negative outcomes, but even when it comes to negativity its
cathartic to listen in the same way that crying is. On days when I’m already in
a lot of pain, I listen to a song, and relive the memory. It can even make me cry on
occasion, especially when I am exhausted from a bad sleep. With all this in
mind, I’m going to share the song that currently sits at the top of this list
of several songs, The Humbling River. For me it’s not even so much about the
quality of the music as it is about the ways I relate to them. I’ll write down
the lyrics and explain how they’re connected. Here’s the Youtube video link for
the song: https://www.youtube.com/watch?v=O0YxeTjFn70
The Humbling River
Nature nurture heaven
and home, Sum of all and by them
driven: My motivations are primarily centered on both my family my friends,
their support, and simply who I am.
To conquer every
mountain shown, But I’ve never crossed the river: I’ve persisted through
challenges large and small yet there’s still so much I’m still unable to do.
Brave the forests,
braved the stone, Braved the icy winds and fire: This represents the
physical side to my pain, especially the fiery burn I often get in my shoulder.
Braved and beat them
on my own, Yet I’m helpless by the river: This depends on your perspective.
What I mean by that is that I have massive support from friends and family but
at the end of the day I’m the one who has to face the pain, no one can share
that burden and so there’s again so much I can’t do.
Angel, angel
what have I done? I’ve faced the quakes, the wind, the fire. I've
conquered country, crown, and throne, Why can't I cross this river: “What
have I done” references my suicide attempts and is also a good description of
my current thoughts on those attempts in hindsight. What have I done?
Pay no mind to the
battles you've won, It'll take a lot more than rage and muscle: It doesn’t
matter what I’ve accomplished in the past, securing the future requires new
tactics. Before I received my diagnosis I was considered crazy. Before deciding
to end of my life I tried to escape my situation in two ways: muscle and rage.
First I tried muscle, meaning I thought maybe my pain would go away if I simply
got strong enough. I would quite literally run around the block over and over
again in a desperate attempt to strengthen my legs. I did this for about a week
and it only made my pain worse, so I gave up on that and turned to the only
thing I had left: Rage. When I was at my worst point I had a breakdown of fury
mostly aimed towards my doctors. It involved screaming and pounding on the ground.
My dog came up to me to see what was wrong so my parents quickly moved her
away. Simply witnessing this action blew all the fight out of me. I would never
in a million years hurt me dog even in that state but the fact others were
worried I might even for a second was depressing, and so rage turned to
sadness. Obviously these incidents weren’t particularly helpful either, which is
when I turned to overdosing.
Open your heart and
hands my son, or you’ll never make it over the river: This represents the
need for myself to open up my experiences to others, partially so they can help
me deal with any future unpleasant experiences. I must also be willing to
accept help to make it through this.
It'll take a lot more
than words and guns, A whole lot more than riches and muscle: I tried using
words to describe my pains with my doctors so we could figure out how to manage
them. That also didn’t pan out how I had hoped. As for the gun, as I mentioned
in a previous chapter, that was what I decided my next method to die would be.
Thankfully I never went through with that plan.
We also tried throwing money at the problem. While there are services crucial for functioning I have to pay for, in general money will only get you so far. I need weekly therapeutic massages to keep my leg pain under control, and insurance only partly covers this. We paid $1000 for a pharmacogenetics test which ended up being totally worthless. The test couldn't explain my medication problems. There's a chance that pharmacokinetics might give us some answers (why I need to take so many pills for such a small effect) but that's $10 000. We're going to wait to see what the EDS specialists at the new clinic recommend. We tried paying naturopaths, osteopaths, and physiotherapists. Only the physiotherapy made any difference, but in strength, not pain. I need medical marijuana to fall asleep and this is incredibly expensive since I need enough for every night, not to mention the vaporizer. Money has mostly allowed me to maintain the status quo but it can't make my pain any better.
We also tried throwing money at the problem. While there are services crucial for functioning I have to pay for, in general money will only get you so far. I need weekly therapeutic massages to keep my leg pain under control, and insurance only partly covers this. We paid $1000 for a pharmacogenetics test which ended up being totally worthless. The test couldn't explain my medication problems. There's a chance that pharmacokinetics might give us some answers (why I need to take so many pills for such a small effect) but that's $10 000. We're going to wait to see what the EDS specialists at the new clinic recommend. We tried paying naturopaths, osteopaths, and physiotherapists. Only the physiotherapy made any difference, but in strength, not pain. I need medical marijuana to fall asleep and this is incredibly expensive since I need enough for every night, not to mention the vaporizer. Money has mostly allowed me to maintain the status quo but it can't make my pain any better.
The hands of the many
must join as one, And together we'll cross the river: I won’t survive if I
go it alone. I need the help of friends and family and shouldn’t be afraid to
admit that.
Nature, nurture
heaven and home, And together we'll cross the river: As long as I maintain
these motivations and work together with others, much more can be achieved.
With
so many emotions brought out by re-experiencing such strong memories it can
sometimes be overwhelming, but I’m determined not to run away from my own
memories. It’s a step away from Post-Traumatic Stress Disorder, where sounds or
sights associated with traumatic memories can trigger flashbacks; the main
difference being that my memories aren’t immersive in the same way as an actual
flashback. It’s more about reflecting on my choices and horrible experiences
rather than actually fully reliving them.
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