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Raising Awareness About Life

Share Your World: July 10, 2017

Share Your World: July 10, 2017

July 10, 2017 ribbonrx Comments 3 comments

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!

How do you like to spend a rainy day? Strangely enough, today is a rare (as of late) rainy day! Which makes me so happy because I honestly prefer rainy days to sunny ones; it’s the migraineur in me. As I don’t work anymore, one day is not any different from the other in terms of what I do with myself. But I’ve always loved to spend rainy days reading, which I have been doing today. As long as it’s not storming, I also love opening the windows in our bedroom just a bit so I can really hear the rain as it drips from the flora outside. Ah, petrichor.

http://gph.is/2nrpFVF

List at least five favorite treats. (They do not have to be sugary).

  1. A family tradition called Hydrox Dessert
  2. Gluten free lemon bars from Mom’s Place Gluten Free
  3. Gluten free Chocolate-dipped cookies from Katz Gluten Free Bakery
  4. David’s mom’s Jello dessert she always makes at Christmas.
  5. Peanut butter cup milkshakes

Where’s your favorite place to take out-of-town guests? The beach just up the road.

IMG_1482
Photo credit Dave Hoekstra

You are trapped in an elevator, who would you want to be trapped with? Probably my brother. He knows enough about elevators (owing to a slight childhood obsession with them) that he would probably be able to figure out how to get us out.

Optional Bonus question: What are you grateful for from last week, and what are you looking forward to in the week coming up? To make a long story short, I’m grateful that I was persistent enough in hounding the benefits people at work that I was able to deduce their true intentions regarding my long term disability benefits (newsflash: they’re doing everything they can to avoid granting me benefits.) I can only hope I can get what they’re “missing” together before it’s too late.

For this week, I finally have my appointment with the POTS specialist that I’ve been waiting six months for! This means I may finally get effective treatment!!! And we may figure out a cause! Seriously, I cannot wait to see this guy. He previously had a practice in Florida and he’s so good at what he does that many of his patients from that practice fly all the way here to Ohio to continue seeing him. I’m still only cautiously optimistic, though. POTS is an extremely complicated illness to manage because there are no treatment guidelines and no approved medications; everything is really anecdotal evidence and trial and error. What works for one patient won’t necessarily help the next. So I’m hopeful, but not holding my breath. Still, maybe I won’t have to live like this anymore.

?ribbonrx

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beach, blogging, dessert, dysautonomia, postural orthostatic tachycardia syndrome, POTS, rainy day, Reading, share your world

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3 thoughts on “Share Your World: July 10, 2017”

  1. Cee Neuner says:
    July 11, 2017 at 12:31 pm

    Thanks so much for sharing this week.

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  2. Maureen Hartnett says:
    July 14, 2017 at 12:33 am

    You are good at sharing the rubber-meets-the-road POTsies life. I am with you on hospital phobia. I think it is roots a feeling of being under someone else’s control or being trapped. The last time I was in hospital was March 28th and I told the nurse I have a history of escaping from the hospital..which is true. It totally freaked her out and I stayed the extra days the cardiologist asked for, because I felt sorry for her. When we are old we will have a lot of stories to tell our grandchildren. Keep up the good work and continue to spread the word!

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    1. ribbonrx says:
      July 14, 2017 at 1:43 am

      Thank you! Oh, I hate the hospital now. It’s made worse by the fact that I worked there for six years, so I’m always worried about running into someone I know. Of course, now I have many more appointments scheduled, so I’ll just have to bite the bullet!

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