You know that scene in Charlie and the Chocolate Factory when Violet Beauregarde starts chewing the meal gum and starts swelling up when she hits the delicious blueberry pie? Well that’s me, but without the pie. Mostly. David did pick me up some delicious blueberry/blackberry juice at the local fruitstand, but that is neither here nor there.
My feet, ankles and legs are swelling so bad that I am wearing compression socks on 90F heat. My face is puffy. I am gaining weight and look like I am on steroids. It got even my recalcitrant GI to order some bloodwork. Still waiting on those results. Hopefully, they come in today, otherwise I won’t know until next week.
This morning I took my last dose of the second round of antibiotics for my presumed SIBO. Yesterday, I accidentally pushed a flush too fast and the resulting pain made it clear that I remain no where near ready to increase my feed yet. But for a change, I get to discuss the issue with a doctor soon.
Next week is a double GI week. Tuesday, fingers-crossed, I get to see my previous GI at Stony Brook. And my complex care coordinator has been sending her all of my latest blood work results, so she will be up to date. Thursday, I have an appointment with my current GI. He noticed that my last round of bloodwork came from another GI, so the cat is out of the bag that I am looking elsewhere. But I reassured him that I was not switching doctors at this time.
In a couple of weeks we are meeting up in the Berkshires with David’s large extended family. I have started a medical packing list and it is long. And the logistics are fraught. In the past, David and I have struggled to find enough outlets and horizontal surfaces for all of our devices and chargers and my CPAP. But now we have just so much more crap to bring with us. And I am anxious about the usual paucity of outlets by the bed. I sleep while quadrupally tethered these days: my CPAP (2) my tube (1) and my pump (1). Apparently a power strip is now among our travel essentials.
But wait, there’s more. There are the syringes for flushing, feed bags, stoma cleaning and dressing supplies, formula, etc. And then there are the contingencies. If something comes up, my supplies are not the kind of thing that you can just run out to the local pharmacy to get. For example, I haven’t needed bags to vent into lately. But I will be packing some just in case. You get the picture. Back in The Before Times, David and I were firmly carry-on only travelers. Those days are clearly gone.
I am completely and utterly exhausted. Not the needing a nap kind of exhausted. The existentially drained of spoons kind of exhausted. Two months of starvation has left me utterly spent. I am finding my mindless games overwhelming. Everything is just so taxing that it is all I can do to get through the day. And the days are looooooooong. Last night I was ready for bed at 8pm. But giving in would have messed with my medication schedule ,so I forced myself to stay up until 10. I felt like Ulysses using toothpicks to keep my eyes open just to make it until bed time.
The heat isn’t helping, but it isn’t bothering me as much as it might have in previous years. My dysautonomia means that my internal thermostat is on the fritz. This is good and bad. The good is that, while I am warm, I am not sitting here in an 87F/30C room sweating miserably (I am sitting right next to an AC, but it is off. It feels too hard to climb up on a couch to close a sticky window, so I am just relying on a fan to cool me). This is also dangerous because it means that I could be overheating my body unintentionally. This is why high heat is so dangerous for the very young and the elderly. They have the same thermostat issues that I have.
Fortunately, I have a David. He will be home soon and he will close the window and turn on the AC for me. Although, to be fair, if I didn’t have David to do it for me, I would have gone and fought with the window myself. But the point remains that I need to be very careful about temperature regulation during this multiple-record breaking summer. Yet another thing to pay attention to when attentiveness is very hard to come by.