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”
I’m going to try something a little different here. Last year was a rough year for me due to medical problems I had. I poured out my heart and soul into my personal journals, which were my lifeline keeping me somewhat grounded. To give you an idea of what it was really like to go through all that I did, the rest of this entry is only direct quotes from my journals. I plan to do this every month this year.
Welcome to the inside of my head and heart. Be warned, this is honest and raw.
Finally, a post that’s not about dry medical procedures and appointments! I’m not expecting this post to be much of anything, though. I just need an outlet to get my thoughts together.
Since my appointment with Dr. J the first week of January, I’ve made the specified modifications he asked me to do to help me feel better. But it’s not all physical things I’m dealing with. My emotions are all over the place right now, going from angry to sad to…nothing, I guess. So how am I doing, really? Continue reading “Modifications and Coping”
Start humming “Auld Lang Syne.” (Seriously, just work with me here.)
“Your grace will never be forgot
Your mercy all my life
Will be my soul’s forever song
My story and my light…”
It’s easy for me to sit here and bash 2016 for what a horrendous year it was. I’ve already done a pretty good job of that in my personal journal.
I am not yet done grieving the past year and what it did to me. But I would be remiss if I said that nothing good came out of this year. I almost have to grit my teeth saying that, because I want nothing more than to scream and cry and release some serious emotions about this trash heap of a year. But not knowing what is to come in 2017, maybe 2016 can at least go out on a high note.
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!
Having three surgeries in four months makes for a lot of pre-op testing. Today was pre-op day for surgery number three in 2016-placement of the Pipeline Embolization Device for my aneurysm.
The day began far too early. I went to bed at midnight because my first appointment was at 8:15 am. Unfortunately, I woke up at 3:30 am and couldn’t fall back asleep. I tried going upstairs at 5 am to snuggle with my black kitty Luna on “her” bed, (anyone else have a queen-sized bed their cat has claimed as their own?) but still I lay there awake. I almost cried when my alarm went off at 6:45 am. And of course, I still managed to be late getting out of bed. I ended up getting up when I wanted to leave. Oops. But I just barely made it in time by speeding and parking in a different parking garage than I was planning to, which cut out a 15-minute walk. Continue reading “Pre-Op Day…Again!”
Since things have been getting a little dark around here lately, I want to lighten it up. I currently have 124 followers and many more who read my posts on Facebook and Twitter. So, to make things exciting…
I want ALL OF YOU to submit a question (or more) you would like to ask me either by commenting on this blog post or on my Facebook posts. They can be off the wall crazy or serious; it doesn’t matter to me. And at a future date, I will answer them for you! I’d like to think of it as a coping exercise.