Share Your World- March 27, 2017

This will be a weekly post of the most random of random questions to answer- to share my world! Thanks to Cee’s blog for being the brainchild behind this!

Does your first or middle name have any significance (or were you named after another family member)? My first name, no. My middle name is my mother’s first name (same with my brother; his middle name is my father’s first name.)

Music or silence while working? It really depends on what I’m doing and what kind of mood I’m in. I have music on right now and I generally do while I’m blogging. But while I’m writing in my journal, I’m a bit more introspective, so I prefer silence. If I happen to be doing anything else, like folding laundry, I like music to be on. Continue reading “Share Your World- March 27, 2017”

A Quality-of-Life Update

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! πŸ˜ŠπŸŽ—

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”

Share Your World- February 20, 2017

This will be a weekly post of the most random of random questions to answer- to share my world! Thanks to Cee’s blog for being the brainchild behind this!

When you cut something with scissors, do you move your jaw (as if you were about to chew)? No…do people really do that? Continue reading “Share Your World- February 20, 2017”

One Lovely Blog Award

What a treat to be nominated for the One Lovely Blog Award on Valentine’s Day! Thank you spooniemom (aka Tracy) at Me, My Spoons, and I for the nomination! I am honored! Tracy has been fighting an as yet undiagnosed chronic illness for a long time. She is a true spoonie warrior! (You all need to check out her blog and her awesome Etsy store, The Spoonique Boutique! Love the candles but haven’t had a chance to try out the shower steamers or scrubs yet!)

The Rules:

1- Thank the person that nominated you and leave a link to their blog

2- Post about the award

3- Share seven facts about yourself

4- Nominate other people (15 at most)

5- Tell your nominees the good news

About Me:

  1. I’m a lover of Jesus. He is my everything. Without Him, I’d probably be dead. That being said, before some of you stop reading, these are just my beliefs. I believe in Jesus Christ, but that doesn’t mean I’m going to push my beliefs on anyone else. Everyone has the freedom to make their own choices, and I love you (and so does Jesus) regardless of what those choices are.img_0974
  2. I’m a book-a-holic and I have been since my parents first started reading to me when I was itty bitty.
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    My TBR shelf!

    I was reading Nancy Drew books by the time I was seven. In middle school, I used to read around 30 books a summer. Now I’m back into reading again after a long hiatus (aka six years of college and then my career) and I’m loving it.

  3. I have lots of chronic illnesses (see my About page), but my most recent diagnosis is dysautonomia/POTS. It sucks. I hate it. It’s mean and spiteful.img_0776
  4. I had a brain tumor last year that was removed through my nose. Although I would have picked that over any other method, it was just as unpleasant as it sounds.design
  5. Due to my dysautonomia and associated brain fog, (seriously, it’s debilitating), I have to write down everything in a planner, otherwise I forget to do it.fullsizerender
  6. I marched on Washington to raise awareness for endometriosis before it was cool to march on Washington, haha.image
  7. I have seven cats. They all love snuggling on the bed with me and the electric blankie. Can you find all of them in the picture?img_1864

Nominees:

πŸ’›ribbonrx

A Day With Dysautonomia

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.

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Heart rate after brushing teeth

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.)Β 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”

Share Your World- January 23, 2017

This will be a weekly post of the most random of random questions to answer- to share my world! Thanks to Cee’s blog for being the brainchild behind this!

Ok, I know it’s not the 23rd but I was feeling incredibly run down yesterday and didn’t feel like doing much of anything. Not that I’m feeling much better today, but I’ve gotten restless enough that I think I can sit up long enough to get this one done.

Pause for nosebleed. Such is life on aspirin and Plavix in the depths of winter.

Do you prefer juice or fruit? Juice. First, because I’m lazy, so if it involves washing, cutting, slicing, etc, I don’t like it. Second, I tend to prefer my diet in as liquid a form as possible, especially lately for some reason. I just don’t seem to have the energy to chew my food anymore. Continue reading “Share Your World- January 23, 2017”

We Wish You A Spoon-ful Christmas!

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.

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Get this thing off me!

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.

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Good night, Christmas.

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!

πŸ’›ribbonrx