A little while ago I had to see a different masseuse than the regular one I've been going to for many years. I told him what I tell to every masseuse, use as much pressure as possible. My muscles are so paradoxically tight on a constant basis that only extreme pressure can alleviate the knots in any way. I've found that most masseuses simply don't have enough arm strength to meet my needs. The therapeutic massages can be very painful, especially with the hip flexor muscles. That's a problem for new therapists because they're afraid if they hurt me too much I won't come back. On top of that I think I'm going to stop mentioning I have EDS because then they become terrified that they'll dislocate one of my joints. He told me if the first appointment goes well he'll use more pressure next time. I didn't mention the fact that I would never be seeing him again since my regular helper was available once more. He told me that most people can't handle a deep tissue massage let alone one with maximum pressure. I was annoyed because I thought I had just finished explaining I wasn't like most people, my pain tolerance is off the charts by now. I'm sick of saying, "I know I look healthy but..." They often think I'm exaggerating. With my regular massages I can't help grunting pretty much every few seconds and when I saw this temporary guy I didn't grunt a single time. It's hard to find strong masseuses these days.
I'm happy to report that the sleep specialist I've been seeing for a few years finally fully trusts me now. My old sleep doctor ran out of ideas for solutions and so referred me to the new one. During my initial visits things didn't go very well. In large part due to certain family members misrepresenting my situation the doctor got a negative first impression of me. When he was falsely told my main issue is sleep hygiene he believed it. Over time I proved the truth of my words, that medications simply don't work properly on me. As he realized this his perspective changed and he gave me more freedom in managing my medications. This led to an improvement in functioning and he became happy with my progress. When I last saw him I told him about my excruciating pain spike that I have talked about in recent chapters, showing him the picture of me in agony. He told me to hang in there which I really appreciated. He himself has severe chronic spinal pain and so I think him seeing the picture was a bit like looking in the mirror with his own past experiences. During that visit he gave me many prescriptions to try out different combinations of medications in my own way when the time is right. He now agrees that maintaining my functioning is the most important thing. He doesn't like how much quetiapine I take, and neither do I, but we both believe that if taking copious amounts of quetiapine is what it takes to get me to function then it's worth it. The EDS clinic told me they know several patients with similar medication absorption issues as me but none are anywhere close to as extreme as me. We're all becoming a bit less worried because everyday it seems more than likely my body is just not absorbing most of the pills I take.
A couple of months earlier I had been working with the sleep doctor to try to lower my quetiapine dosage for the umpteenth time. As always I was able to take less pills, I was able to wake up earlier, but at the cost of my functioning. I put up with this for a month before we gave up again. I think what made a huge difference in perception is that I was utterly exhausted at that earlier appointment with the lower dosages and full of energy at the next appointment when I was allowed to take as many pills as I needed. I was speaking fast, smiling, and telling tales of all the cool stuff I'd been up to since my functioning had returned. This showed him my potential. His main goal is now to help me reach that potential rather than always pushing the usual things that won't work because of my unique situation. Progress!
While I was at camp I found it interesting to note the different ways people notice my health changes. Whenever I had a crappy sleep I would get asked by half the camp what's wrong. At home I have way more crappy sleeps than at camp because I can get away with losing functioning while working on taking less pills so the constant overdosing at camp made me have more good days than usual. Most people at the camp don't realize how much these things are apart of my life, they don't know what I'm going through when I'm locked in my room back home. This means them seeing my exhaustion is a rarity and so they assume it's a seldom problem for me. I used a bike to get everywhere at camp this summer, I didn't use my cane a single time. Biking is easy on the joints so biking without a cane is still way less painful than walking with a cane. The pain is still awful though and so when I limp people notice it. It's out of the ordinary for someone constantly on a bike to be limping and so people get confused. I am often limping to some extent on bad pain days, though the style of the limping changes day to day just like my pain does. Sharp pains that come and go are the most common causes of limping. It definitely seems that most people at camp assume I'm far healthier than I am because of the reasons mentioned above. I don't really mind that much as long as people don't make a fuss when I need to rest for a day.
Friday, July 28, 2017
Summer Lovin', Had Me a Blast
In terms of this crazy summer the car accident was just getting things started. At camp there is a game that we play once a year called the Mattress Game. Usually there are 2 teams that send members to grab a mattress laid out in the middle of a field. Whoever gets the mattress to their team's side of the field wins that round. This year for whatever reason there were 4 teams instead of 2. This meant that anyone actually winning was far more difficult. Half of the time the round ended in a draw after a timer of a couple minutes expired. Since the mattress is being pulled in 4 directions rather than 2 it took far more strength to win. I suppose I was pretty naive about physical exertion, especially when it came to me specifically. I didn't think there was anything dangerous about full out exertion as long as it's for a short period of time. I thought that 2 minutes is short enough. Trouble was, I was going up against 3 people twice my size. I weighed only 124 pounds, I would not be surprised if they were over 200. It ended in a draw, though when the timer ended it was closest to my side of the field. Was it worth it? Not even remotely. I immediately collapsed and could not stand back up for 10 minutes. It felt like my heart was going to burst. Who knows, maybe it was actually close to that. When you have EDS that kind of thing is always a possibility albeit usually a rare one, unless you have vascular type (which I don't.) As soon as I could I stumbled into the nurse's office. The air conditioning was blessed. I fell onto the couch and witnesses who saw me lying there said I looked like death, worse than they'd ever seen me. The nurse gave me some gross orangey tasting liquid to drink. I had a lot of trouble breathing and was wheezing with a sore throat. We think I had Exercise-Induced Bronchoconstriction, a form of asthma. The doctors in my family said my body can absolutely not handle this and to never do it again. It was an hour before I could get back up again and it took a week for my body to fully recover from the ordeal. The moral of the story is this: sometimes trying your best is a bad idea. If my life was on the line I don't think I could have done much better except maybe from the adrenaline boost. One things for certain: I'm never doing that again and not playing that game unless they switch it back to 2 teams.
The camp director came again with my sister and quickly packed up some essentials like my pills and drove me to the nearest hospital. They told me I was conscious but completely unresponsive during this time. I was completely disconnected from reality and before I passed out it felt like I was going to die. I woke up what I think was hours later at the emergency room. It was just my luck that I woke up right before they decided to transfer me to a different hospital. They couldn't figure out what was going on and so felt anxious about keeping me there. It was a very uncomfortable ambulance ride. I was at the same time extremely nauseous while incredibly hungry. I hadn't eaten anything in a while since I was completely incoherent. I asked how long the car ride would be and was miserable when they said 50 minutes. I was brought to the intensive care unit and was given many IVs while they tried to figure out what happened. I had to stay overnight and was only allowed to take a few of my pills so I woke up at 7 am exhausted. A couple of hours after waking up and being able to speak I had finally remembered what actually happened the night before. I made the connection of the oil with the fainting and we were all quite relieved to find out this would be temporary. My stomach got very messed up again as the oil made its way out of my system. My sister stayed by me for over 12 hours, most of which I was asleep for. Almost all of my stuff was still at camp so my mom had to drive many hours to get it all and bring it to the hospital and then bring me home the next day. I felt like shit over the next few days but eventually got back to normal.
But wait, there's more! Out of the blue my stomach starting aching. "Well, Mitch," you might say, "I get stomach aches all the time!" I'm sure ya do friend, but the problem is it got worse, and worse, and worse... What did I do? I moaned and groaned on my bed thrashing about for hours on end. I should have gotten help as soon as I was bed-ridden, but my experiences have caused more than physical damage. Every time some acute problem comes up we end up finding out what's wrong and by extension find out nothing can be done and so I would just have to wait it out. It's happened countless times; I thought this was just another instance of this. The main problem was I simply couldn't go to the bathroom. Imagine needing to go more than you ever had in your life and simply not being able to. It was the worst stomach pain of my life except for maybe Serotonin Syndrome. SS made me feel sicker but I think this was more painful. Unlike SS I was constantly vomiting my stomach contents since they were stuck. To make matters worse whenever I need to go to the bathroom my leg pain gets worse, presumably from compression on the sacral nerve. Eventually the discomfort grew so bad I felt I had no choice but to go to the ER. The camp director drove me to the hospital. The pain kept growing the whole time I was sitting in the waiting room. Eventually I'm told they're going to do a scan soon. Fortunately or unfortunately (depending on how you look at it) I was able to go to the bathroom twice 10 minutes before the scan and it was an awful experience. The next part is even crazier. The scan showed that there was an obstruction and when I asked if EDS related gastroperesis could be the cause they said yes and that taking codeine nightly was also likely a large factor. Gastropersis means the nerves that push food through your stomach aren't working and so things get stuck. Since the scan itself was pretty bad the doctor agreed my situation must have been ridiculously bad before I was able to go to the bathroom. My sister stuck with me through the mess, playing a harry potter audio-book for me to listen to. She covered me in newly warmed blankets because the cold IV fluids passing through me were making me shiver constantly. I was prescribed medication to prevent it from happening again but I hated having to add anything to an already overflowing cocktail.
Did you think that was everything insane that went down that summer? Nope. On the last night of camp I went to take my usual nightly cannabis oil like I do every night to help me sleep. I have a measuring syringe that lets me squirt the exact amount I need into my mouth, 0.8 ml. Trouble was, the bottle was almost empty; meaning I couldn't get the syringe far enough to get the last of the oil. I had already taken my other sleeping pills and so wasn't thinking particularly clearly. I decided that since I can't get at the oil there must be very little left so I'll just drink the last bit straight from the bottle. What I should have done was pour the oil left into a fuller bottle. Honestly I probably ingested 10 times the oil I was supposed to, accidentally. I fell asleep pretty quickly (duh) and thought all was fine. Then at around 6:30 am outside I woke up feeling beyond wasted. I couldn't stand up, I could hardly move, and I couldn't shout. I literally felt like I was dying. Imagine the slow awkward movements of a sloth and then you'll have a clear picture of what I was doing. I knew something was very wrong and so I fell out of bed and started trying to crawl towards my roommate on the other side of the room. When I got to his bed I tried banging on it, saying his name over and over. I was only able to use such little force that it took some time for him to wake up. When he did wake up he saw my lying on the floor and knew I was fucked up. With my last bit of energy I told him to get help and then passed out. I remember nothing beyond that, everything else had to be told to me after the fact.
The camp director came again with my sister and quickly packed up some essentials like my pills and drove me to the nearest hospital. They told me I was conscious but completely unresponsive during this time. I was completely disconnected from reality and before I passed out it felt like I was going to die. I woke up what I think was hours later at the emergency room. It was just my luck that I woke up right before they decided to transfer me to a different hospital. They couldn't figure out what was going on and so felt anxious about keeping me there. It was a very uncomfortable ambulance ride. I was at the same time extremely nauseous while incredibly hungry. I hadn't eaten anything in a while since I was completely incoherent. I asked how long the car ride would be and was miserable when they said 50 minutes. I was brought to the intensive care unit and was given many IVs while they tried to figure out what happened. I had to stay overnight and was only allowed to take a few of my pills so I woke up at 7 am exhausted. A couple of hours after waking up and being able to speak I had finally remembered what actually happened the night before. I made the connection of the oil with the fainting and we were all quite relieved to find out this would be temporary. My stomach got very messed up again as the oil made its way out of my system. My sister stayed by me for over 12 hours, most of which I was asleep for. Almost all of my stuff was still at camp so my mom had to drive many hours to get it all and bring it to the hospital and then bring me home the next day. I felt like shit over the next few days but eventually got back to normal.
It goes without saying I learned a lot of lessons this summer.
1. Don't listen to random witnesses, they might make you call the cops on yourself.
2. Remember that everyone is friends with each other in small towns. You won't beat friends.
3. Don't drive too close, apparently people can exit dangerously like that on highways. It's legal to not take the ramp.
4. Remember that licenses are automatically suspended if you have your full G, consider pleading on compassionate grounds.
5. Don't always do your best. Don't over exert yourself, especially if you have EDS. It doesn't matter if it's a short period of time.
6. When you are in so much pain you are bed-ridden unexpectedly get help without waiting many hours for things to get worse.
7. Never take cannabis oil without a measuring syringe.
Getting Off Easy
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"...
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, 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.
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