A Doctor's Trust

     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.

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.

   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"...