A Tactical Retreat

Someone with EDS created the following artwork to try to convey what EDS pain would look like if it were visible. There's arrows through the head, neck, chest (costochondritis) and knee joints. It can be so bad that I take even the tiniest shortcuts. For example, you know how they advise you to wait a little bit before drinking from tap water? I don't do that because even just the few extra seconds of standing make it not worth it.

 

     To start off, my doctor brother gave me some really cool news. A patient of his mentioned she had EDS and so my brother mentioned that he has a brother with EDS who has a blog named Bend or Break. Turns out she recognized the name and had read my blog all on her own, she wasn't in my special little Facebook group of friends and family. I had never met her or spoken to her. She just found it randomly online and followed it from there. This was really encouraging and awesome to hear; I wasn't sure if anyone outside the group I run read it but apparently there are some out there. How many? I have no idea. 

     In terms of academics the lecture professor saw how I was struggling and looked for ways he could help. The biggest offer was to do reading courses with me. I had never even heard of reading courses before. Basically you choose a topic in your field (political science) and research the hell out of it. That of course means a lot of reading, hence the name. The point of it is so you can work at your own pace. It's one on one with the professor and can be done online so due dates and such are far more flexible. This was invaluable to me because due to the renewed horror of insomnia we decided it'd be best for me to do the winter 2019 semester from home. I look at it as a temporary tactical retreat.

       A big factor was that the problem of sleep deprivation combined with being at university meant I was sick from the extra germs and weakened immune system more often than not. Being sick in turn makes my pain worse which in turn makes my insomnia worse which in turn... To make matters worse I was told my allergy injections may further weaken my immune system. Thankfully, with a doctor's note the university gave me my residence deposit back as a refund. If needed I could extend the reading course into the summer. During all this I kept breaking personal sleep records; a few days ago I slept 21 hours and 10 minutes. The whole day just goes poof. 

     I started transferring to a new sleep specialist who was the colleague of my old one and he said at some point we should do an overnight test that checks what my melatonin  blood levels are throughout the day. He also prescribed 2 new sleeping medications to help me try to lower the consistently ridiculous quetiapine dosages. The quetiapine had been causing brain fog which I would successfully treat with vaping CBD cannabis. The new saphris medication is very similar to quetiapine and helped me lower it from 2000-2300 to 1350-1650. The new silenor medication is similar to melatonin and helps me stay asleep. They didn't help reduce my wakefulness periods at all but they did help me fall asleep with my quetiapine dose almost cut in half again. That dose kept rising as the ketamine infusion effects continued to wear off. I always have to wonder what the bigger factor is between my body not properly absorbing medications or my pain being so high that it takes extra doses to help at all. As my functioning decreased again I was forced to defer one of my final exams into the end of February next semester. Why so late? I needed time to recover from an upcoming surgery because...

     An old issue suddenly reached a tipping point: my umbilical hernia. I've had it for many years but it didn't start being painful until a couple of years ago. I mostly ignored it because it didn't appear to be dangerously strangulated and most of the time didn't hurt at all. No longer, now it hurts badly almost all the time. Hernias are a very common problem in those with EDS. I had 3 inguinal hernias when I was 9 and 10 years old, this was my first umbilical. My worry was that the hernia would become strangulated (which is life threatening ) at a very inconvenient time, like in the middle of a difficult semester or while travelling. I was examined by a surgeon who agreed we should get surgery out of the way now. 

    I'll have another scar to add the collection and was told my innie bellybutton might become an outtie. I barely cared, but found out there's a simple method the surgeon can use to keep it an innie. I have a very slight preference for that if it's no trouble anyway. Since the xolair allergy injections tamper with the immune system I'll have to be given extra antibiotics for the surgery. That's probably the smallest of the many problems surrounding this. Of course my shitty fragile EDS skin also increases the risk factor. According to the surgeon the general population has a 15% chance of the surgery going wrong and I have a 20% chance. Even with that, I'm worried my number might be significantly higher because even for someone with EDS my skin is really weak. He may be a great surgeon but knows very little about EDS itself. Recall that that was how I got diagnosed in the first place. Skin biopsies are usually non-conclusive for this kind of thing but my skin was so deformed the dermatologist said there's no doubt I have EDS. As you might imagine, I don't exactly trust my skin to do its damned job after the surgery. To add on to that, I will need extra antibiotics because the allergy injections mess with your immune system.

    Something especially problematic was that the surgeon said he can't use the mesh procedure to repair the hernia and so would need to solely use stitches. When I had my groin hernia repaired in 2004 it broke and recurred in 2005 and they had to do it the mesh way the second time to keep it safe. I worry this foreshadows that without mesh my bellybutton hernia will also recur. To make matters worse, the surgeon said another risk factor is that I have very little fat in the area to work with. I'm still not sure if he means me being fit is a bad thing in this way or if the lack of fat there is just biological chance and nothing to do with fitness. My cousin who is also a doctor said that if it does recur there's a high chance it will be worse than it started. When I heard that, I almost called off the surgery but when the pain continued to worsen and significantly impact functioning I made the decision to stay the course. 

     The same cousin suggested that I talk to my old EDS specialist to ask if there's any special surgery precautions we should take given all my known issues. The head of the only EDS clinic in Canada said: "Surgery: Patients with EDS have fragile skin that is more prone to wound dehiscence and delayed wound healing. If the patient requires surgery the  following should be taken into consideration for: Skin closure should be  performed in two layers with minimal tension, a sufficient amount of sutures, deep stitches, and supportive Steri-Strips or skin glues. Skin clips/staples should be avoided.  Finally, sutures should be left in twice as long as normally recommended in 

order to avoid wound reopening. If anesthesia is required, refer to PubMed PMC4223622." I also asked him about if they're now willing to look into pharmacokinetics medication absorption testing as a study with me but he said they still don't have the funds for such an undertaking. At least I take that to mean they might one day be interested in using me as a test subject if the required cash ever materialized ($10 000 I think). 

     My dad added this, saying "I don’t have expertise in this so I am basing it on theory. They would assume that the connective tissues don’t have normal support so they would avoid using those tissues to close the gape in muscle. They would suture muscle to muscle and use extra sutures to close the internal wall." He warned me that this special method will mean a more painful recovery but I say bring it on. As long as the entire hernia doesn't recur I am perfectly fine with dealing with temporary increased pain. When you suffer severe constant chronic pain anything that's temporary seems minuscule in the overall picture. 

     These worries of mine increased when I again turned to the EDS group. I asked about people's hernia repair experiences and received some crazy stories. Almost all of them got mesh. This one person had the stronger mesh repair and it STILL recurred 2 weeks later, and no mesh for me. Now they have to live with this: 4 prongs sticking out of their stomach.

      

      Lastly came the most important occurrence: I got approved for more ketamine infusions! After begging for the entire semester they finally agreed to another 5 day stint at the hospital at the end of January. It's a shitty feeling to have to beg for something you hate. It's not as if the infusions are remotely pleasant. They suck, hard. I wouldn't ask for more unless I was truly desperate. If you are reading this before the end of January 2019 and want to visit me at the hospital of downtown Toronto then the dates are January 21-25 from early morning to afternoon. Just shoot me a message and we can coordinate.They normally do infusions once a year but I need them once every half year, evidently. Yes there are brain damage risks but if the doctor (reluctantly) agreed that means they're acceptable. I'd rather have some functioning and risk brain damage from ketamine than have no functioning and risk brain damage from constant sleep deprivation. 

      I was really hoping to do the procedures over winter break but the best they could do was put me on the cancellation list. Thankfully, before we began finalizing things, I realized a very major concern: how the infusions would impact the surgery. As you might remember from my original ketamine infusion post, the flood of high dosed ketamine into your body makes you shake uncontrollably for hours on end as if you were having a seizure. If I were to do the infusions after the surgery I'd surely rip my stitches back open and ruin everything. Therefore we booked the surgery to take place a few days after the infusion. This unfortunately meant I'd have to put up with the hernia pain a bit longer, not to mention it completely screws over the next semester. 

     At the very start of the new semester my productivity will be low all of January because of the insomnia and hernia pain until infusions and surgery. Then I have to set time aside to deal with the week of infusions themselves followed swiftly by surgery recovery. Like I mentioned earlier, my recovery will be twice as long. Then there's the time needed to re-study for the deferred exam. Then there's the allergy injections which may become once every 2 weeks instead of monthly. Then there's my important weekly massages and a constant barrage of other doctor appointments. With all this going on it's very valuable that I have access to reading courses because I'll probably have to extend them into the summer. My productivity will hopefully skyrocket again from the infusion treatment and hernia going away but I'm not looking forward to  another period of constant work and no social life. I'll put effort into being social over winter break, that stuff's important. I just have to hope I haven't built up a tolerance to ketamine or something. Still, I may struggle to complete even a single course next semester. Maybe my some miracle I can do one and a half courses if I recover quickly and then finish the second course in the summer. Wish me luck!