I guess it’s been awhile since I’ve written a real post. Since it’s Endometriosis Awareness Month, I’ve been trying to reblog my better endo-related posts to raise awareness at a time when it’s most important. You can check out my new endo-specific page here, with information, expanding resources, and links to my blog posts. It’s pretty and has that new-page smell! 😊🎗
I guess, when it comes down to it, I’ve been using this month to hide. From myself, from the world. Some good things and some not-so-good things have happened, which you would know if you read any of my weekly Monday “Share Your World” posts. (But the vast majority of people who read those are people who don’t actually know me, so what do the finer details of my life matter to them?)
I’m on this merry-go-round that happens to be a roller coaster at the same time. And I really want to get off it so I can puke (no, really, I am actually uncomfortably nauseous right now, but it’s become a constant part of my life, too, so whatever.) Or at least purge…something. Continue reading “A Quality-of-Life Update”
What’s it like to have dysautonomia? Let me take you through a day in my compression socks so you have some idea of what I fight through on a daily basis.
Imagine it’s a new day. You wake up and get out of bed. You do your business and then brush your teeth (with an electric toothbrush, by the way.) As you’re doing this, you place two of your fingers over your carotid artery. Your heart rate is rapid, probably in the 120s, maybe pushing 130. And all you’re doing is standing up, brushing your teeth. Continue reading “A Day With Dysautonomia”
Now that Christmas has come and gone, I suppose it’s time to be like everyone else and write about it! I’ll start with Christmas Eve, since that’s when all the action started.
The day began quite horribly. I was still wearing the Holter monitor, and it’s a good thing too, because I was extremely symptomatic. I have never had to try so hard in my life to get off the couch. A lot of it was because I hated the way I felt when I stood up, so I tried to avoid it. At one point I got up to get a snack and wound up having to sit down on the kitchen floor to eat it, because even sitting in a chair would have been a bad idea. The only way I was able to do anything that still had to get done was to drink a ton of water. Meanwhile, I got a message from my endocrinologist (on Christmas Eve, bless her) that the thyroid labs she had ordered the day before (TSH, free T3, and prolactin) were normal, so my thyroid is not causing this issue.
I had to keep the Holter monitor on until 3:30 pm. Taking it off and then finally being able to shower was glorious. I made it through my shower, but when I checked my heart rate on a monitor a full 25 minutes after having first stood up to take my shower, it was at 130. So I grabbed a 30 oz container of water and a bag of pretzels (gluten free, of course) and stuffed myself. Remarkably, it made me feel a lot better; another giant clue that I have some sort of orthostatic intolerance, as increasing sodium intake and hydration is basically the primary means of managing POTS. But more on that at another time.
My family (parents and brother) arrived in the evening and David got home from work shortly thereafter. Since it’s a tradition in David’s family to have homemade New England clam chowder on Christmas Eve, we had that for dinner. We spent the rest of the night catching up. Based on my response to my “salt loading,” David and I came up with a daily hydration plan to try to keep my symptoms at bay. First thing when I get up in the morning, I will drink a Gatorade to get some sodium into me. Then, after I’ve at some point consumed two 30 oz containers of water, another Gatorade, and so on.
I tried out the hydration plan when I got up Christmas morning. And by golly, it worked! I felt great for most of the day! David’s parents arrived around 11:30 am as David was finishing preparing Christmas dinner. It was delicious and enjoyed by all!
Following Christmas dinner, we did a video chat with my brother-in-law and sister-in-law, which was, as always, very entertaining! By 3 pm, it was time for presents! It took us two hours to get through everything with there being seven of us. It was a lot of fun because I think everyone got things they wanted. I got a nice haul of books I wanted and other stuff. Even the cats were enjoying their new valerian-filled pouches (except Aurora; she gave it a sniff and went back to sleep. Molly, meanwhile, was going nuts.) David’s parents headed home after we all spent some more time chatting, and the rest of us just basically hung around being lazy for the rest of the night. I suppose you could say it was technically a white Christmas, but all the snow was melting and there were patches of grass everywhere. All the rest of the snow melted today since we hit a record high of 64 degrees Fahrenheit (18 degrees Celsius.) But the snow will be back in a few days…
This weekend was a true test for me. I will be upfront and say both days completely depleted my spoons. Last night, as I was folding up tissue paper to store away and be used again, I suddenly started to feel off, so I had David get me a Gatorade, which was my second one of the day. I finally crashed to a stop around 7 pm, when I sat down on the couch and realized I could do nothing more functional that day. I was even too tired and unable to concentrate on anything that we didn’t even watch the Doctor Who Christmas special live. I’m so ashamed; it’s been a whole year since we had a new episode of Who. When midnight hit, I could no longer keep my eyes open, so I went to bed and didn’t get up until 11:30 am today. I’ve felt reasonably well today, despite being tachycardic when I got out of bed, but right now my head hurts and my throat is sore since we have a cold front coming through. So I really don’t feel well at the moment and it’s making me grumpy. It’s getting hard for me to think right now.
I also learned that I still have a long way to go as far as my health is concerned. Yes, I got through the weekend, but definitely at a price. I’m not the same as I was a year ago and I may never be again. I’m anxious about what happens next.
Anyway, this post is crap because I can’t think very well anymore. So I’m just going to stop now. Hope everyone had a great Christmas!
This is, verbatim, a journal entry of mine from January 17th and 18th, 2016, back when I did a lot of writing prompts. It’s interesting to look back on now.
Another writing prompt I saw online was to list out 100 things that you want. At first I thought that sounded kind of selfish, but then I thought about it and realized that things you want don’t have to be material, and wanting things doesn’t indicate a lack of God’s blessings, but it can give you appreciation for what you already have and how you can better yourself, your life, and the world around you. I don’t know if I can come up with 100 things, but I’ll list as many as I can think of now. Continue reading “Is It Everything You Dreamed It Would Be?”
Although the current time is no longer nocturnal, I was literally up all night and started thinking about maybe writing a blog post in the predawn hours, so I’m going to count it anyway.
Yes, I was up all night. And I’m obviously still awake, even though it’s after 10 am. Maybe thinking through and writing down what is on my mind will help me pinpoint why I’ve been awake and will help me get to sleep. This will be complete stream of consciousness to try and get things off my mind. Continue reading “Nocturnal Musings #14: Up All Night”
Recovery is a tricky adventure. You can take ten cases of the same surgery and no single recovery is ever the same. There are certainly some trends, but never the exact same set of circumstances. I’ve had five surgeries total now, but the road to recovery has been different for all of them.
Take my pelvic surgeries for my endometriosis. I’ve had three of them, and all three had different recoveries. The first one resulted in a UTI (which I’m still bitter about) and slight surgical site infection. The second one was a painful recovery (because it was my excision surgery), but otherwise flawless. The third one had a slight surgical site infection, but my umbilical incision ended up being extremely painful for awhile because the stitches were super tight.
But this is my first (and hopefully only) brain surgery. And this is a recovery unlike anything I’ve experienced before, with an entirely different off-ramp and exit strategy in comparison to other surgeries I’ve had. Continue reading “Recovery Road”