Monthly Archives: September 2016

Reading Wrap-Up: A Madness So Discreet

Mindy McGinnis’ “A Madness So Discreet” is about a young pregnant woman named Grace who is put in an asylum by her family in the 1800s. (I can’t say any more about that or I’ll give away important plot details.)  A doctor studying criminology is amazed by Grace’s intelligence and attention to detail.  They hatch a plan to get Grace out of the horrible asylum and into a different one that is much more humane and progressive than many asylums at that time.   Grace is allowed to work as the doctor’s assistant and she accompanies him to crime scenes.  Eventually the details of how she became pregnant and wound up at the horrible asylum come out of the woodwork.

My library classified this book as teen fiction, which kind of irritated me.  There’s this stereotype that teen fiction is code for “shallow and lame.”  I assure you the book is neither of those things!  (Side note:  I wouldn’t recommend the book for younger teens.  If this was a movie, it would definitely be rated R.)

I love this book so much.  It’s an emotionally difficult read, but it’s super well-written, and I felt like it handled the subject of asylums respectfully, unlike the “lunatic asylums as entertainment” mindset that is so prevalent in our culture.

 

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How to Shower Safely With POTS

Showering is one of harder everyday tasks when you live with POTS.  Not only is it exhausting but it’s extremely dangerous because of the risk of falling and hitting your head.

Here’s my checklist for shower safety:

1.) shower stool

2.) Non-slip plastic mat that goes under the stool

3.) full water bottle in the shower to ease dizziness and other symptoms while showering

4.)  Baby monitors (the “baby” one stays in the bathroom and my husband uses the “parent” monitor.  This may sound, well, babyish, but I need to be able to get help if I feel like I might pass out.  Once I have the service dog, I hope to train him to bark on command, which the monitor will pick up.)

5.)  Manual chair or walker positioned right by the tub (a sturdy chair will work fine if you don’t use a wheelchair or walker.)

6.)  Safety handles in tub

All of these items are available on Amazon in various styles.

If you have a spouse or roommate, I recommend showering when they are home as much as possible, especially if you are newly diagnosed and struggling to get your symptoms under control.  You just don’t want to take any chances with shower safety since it can be such a hazardous situation.

I also recommend reducing your showering frequency as much as possible.  Most people do not need to shower every day, especially in colder weather.  Reducing showering frequency will reduce the risk of falls and it will also save you a ton of energy.  Speaking from experience on the latter!

 

 

BEDS Challenge Wrap-Up and a Big Announcement!

I decided to wrap up the BEDS challenge early.  Life has been super hectic, and the weather has been craptastic and wiping me out.  Plus, I got some Big News, and once I share it, you’ll understand why I need to save my energy.

Okay, here is the Big Announcement:  I am starting service dog training on the 5th!!!  I’m getting my dog from Can Do Canines.  If you need a service dog and are in this neck of the words, I highly highly recommend them.  They are beyond fantastic.  Unlike some organizations, they will customize the training for individuals’ needs.  If your needs change during the course of your dog’s life, they will work with you to add new tasks as much as they can.  When I first applied, my primary disability was chronic pain and fibromyalgia, so I wrote on the application that I needed a mobility dog.  When I was diagnosed with POTS, CDC changed the category from mobility to seizure alert. (I do not have epilepsy, but this is the skill category they use for people with POTS.)  This way I can still get help with some mobility things, but we will also be able to work with the dog on helping with POTS episodes.

I don’t know anything about my dog other than it’s a he.  I’ve been jokingly referring to him as Eddie, because that’s the dog on “Frasier” which is one of the best shows ever.  Yep, I’m weird!

I still want to blog as much as I can about the training process and life in general, but removing the pressure of blogging every day is helping me breathe a lot easier.  Thanks for your understanding, and I hope you all have a wonderful weekend!

Day 16: Awakening Game Series

Over the past week or so I’ve gotten hooked on the Awakening game series, which is available for Mac and iOS devices.  The first two games are available for Mac only, and the rest are compatible with iPads.  You play the role of Princess Sophia, who has woken up after being asleep for a century only to discover that she is the only human left in the world.

I love everything about these games.  The scenery is gorgeous, and the music is soothing and weirdly effective at reducing my pain level sometimes.  There are a bunch of puzzles and mini games you have to solve, which are more challenging than you might think.

If anyone has recommendations for other fantasy games I’d love to try them out!

BEDS Day 15:My Favorite Shows

I want to write a post, but thanks to the brain fog I have the thinking capacity of a Tupperware, so I decided a list might be a good idea.  Here are my current favorite TV shows.

1.) Parks and Recreation (2009-2015)

If you like Amy Poehler, you need need NEED to watch Parks and Rec!  Leslie Knope is the deputy director of the parks and rec department in Pawnee, Indiana.  I have contemplated making Lego and knitted creations based on this show.  If there was ever a show that deserved to be immortalized by yarn and plastic bricks, it’s this one.  The first two episodes move a bit slowly, but then it picks up and gets hilarious.

2.)  Frasier (1993-2004)

Frasier Crane is a radio psychiatrist who dispenses decent advice over the air, but fails hilariously at basic things like fixing a toilet.  His brother, Niles is an absolute hoot!

3.)  The Golden Girls (1985-1992)

Blanche, Rose, Dorothy, and Dorothy’s mother Sophia live together in Miami.  They may be getting older, but they’re not dead yet, and they have plenty of hilarious misadventures!

4.)  The Big Bang Theory (2007–)

This show is an absolute gem, to say the least!  Leonard and Sheldon are geeky scientists who excel in their fields.  Their relationships, however, are quite a different story.  The thing I love about this show is the writers don’t seem to be running out of material.  They just started filming the 10th season, and it’s stayed hilarious all this time.  The other thing I love is how the actors genuinely like each other in real life.  You really see that chemistry in the show.  I won’t be surprised if this winds up being the last season.  But it’s been a great run!

Okay, I’m officially out of brain power for tonight.  I’ll be back for Day 15 ASAP!  Peace out!

BEDS Day 14: Unpredictability

My efforts to get caught up on BEDS posts hit a bit of a snag the past couple of days.  The weather went from sunny to blarg.  The change in barometric pressure can cause excruciating joint pain and mind-numbing fatigue.

My current flare-up is a good reminder of why I don’t have a conventional job or go to school or do anything that requires a solid commitment right now.  I am reliable, but my body isn’t.  That may change once I have my service dog and I get on supplemental oxygen, but I’m not there yet.  This is the body I have, and I am learning to love it and use it to the best of its abilities, but some days this is easier said than done.

I’ll be back with day 15 as soon as I can.  Take care!

BEDS Day 13: Head Covering in Medical Settings

I have worn head scarves full-time for almost four years.  By now it feels as normal to me as putting on socks and underwear in the morning.  One question I get asked a lot is whether or not I wear my scarves for medical appointments and procedures.

The short answer is yes.  I always cover for routine appointments and dental exams.  I know I’m going to be lying down, I will put my hair in in a pony bun with a soft scrunchie and wear a pre-tied tichel so I can lie flat without killing my neck.  For diagnostic procedures and acute situations, I’ll wear a scarf if removal is not medically necessary.  When I had surgery a few years ago, I just wore the surgical cap as my covering.  I have never been asked to move it if it wasn’t medically necessary.  I think that’s probably at least in part because I’ve always lived in areas where head scarves (Jewish and Muslim) are a fairly common sight.

A related question I get asked is what kind of head covering I wear if I was giving birth.  I don’t have kids, but I have heard every answer in the book from women who do.  Some women like wearing their usual style of head covering, some opt for something comfier, and some don’t cover at all.

If you have any more questions feel free to leave a comment!  I’ll be back soon for day 14!

BEDS Day 12: Guess What’s In the App Store?!

The best thing that could possibly happen today has happened:  I discovered Cluefinder games in the Mac app store!  My sister and I were obsessed with these games when we were kids.  I downloaded 4th Grade Adventures and I was slightly disturbed to realize I still have most parts of the game memorized.  My sister’s impression of the villain was absolutely hilarious.  While I’m glad I found a way to play the games on my Macbook Air, I’m slightly disappointed that I don’t have an excuse to get a vintage iBook, since those things are so adorable!

Okay, arthritis pain in my hands is skyrocketing so I’m going to end this here. Woohoo I’m actually making headway on the BEDS posts!

BEDS Day 11: Diverseathon Reading List

There’s this readathon going on in the “Booktube” community called the diverseathon.  It runs from Monday, September 12th through the 19th.  The idea is you read books by people who are different from you, and/or people who identify as a minority in some sense.  I really want to participate but I’m also way too exhausted to make videos right now, so I thought I’d do blog posts.  Since reading can take me awhile, I’m going to give myself till the end of September to get through all the books on my list.

Diverseathon Reading List:

1.)  Days of Awe by Achy Obejas

A Cuban woman traces her identity back to Sephardic Jews who converted to Catholicism to stay safe during the Spanish Inquisition.  When most people think of Jews, they think of Eastern European Jews.  So I thought this would be an interesting read.

2.)  The Muslim Next Door by Sumbul Ali-Karamali

I realized I don’t know much about Islam, so I wanted to read this.  The author delves into common myths about Islam.

3.)  Purple Hibiscus by Chimamanda Ngozi

This is a coming-of-age story that takes place in Nigeria.  It’s about a 15-year-old girl named Kambili who has an abusive father.  She goes to live with her aunt and learns that there is so much more out there.  I read this about ten years ago and I can’t wait to reread it!

4.)  Sparks by S.J. Adams

A 16-year-old lesbian develops a crush on her religious best friend, and she bands together with a few other teenagers who don’t “fit in” and they create their own religion called the Church of Blue.

5.) Wandering Son by Takako Shimura

This is  a graphic novel about a girl who wants to be a boy and a boy who wants to be a girl.  I have only read a handful of graphic novels and books about people who identify as transgender so I’m really looking forward to this one.

6.)  Homegoing by Yaa Gyasi

Two half-sisters in 18th century Ghana lead vastly different lives.  One marries an English colonist and lives in comfort and affluence.  The other is captured and sold into slavery in America.  This book was mentioned in a few different YouTube videos I watched and I knew I had to get my paws on it!  I don’t want to say it sounds interesting because  it’s talking about slavery, but you know what I mean.

I’ll be back soon with Day 12 of the BEDS challenge, and if I can manage two posts tomorrow I will finally be caught up!  🙂

 

 

BEDS Day 10: No Perfect Answers

I’m trying so hard to get caught up on posts while juggling my usual responsibilities of illness management, cat mom, domestic goddess duties, and who knows what all else.  I hate that my BEDS challenge has turned into a “three steps forward, two steps back” kind of thing.

Lately I’ve been feeling like any decision I make about my treatment options is going to be wrong.  I’m doing my best to throw that attitude down the toilet where it belongs, since there is really no such thing as perfect answers when it comes to treatment options and trying to figure my life out in general.  I guess that is one pieces of advice I’d give anyone who has recently been diagnosed with a chronic illness:  Make the best decisions you can at the time and try not to get hung up on results.  Try not to be afraid of changing your mind.  Everything is constantly in flux and you will rethink your current game plan countless times.

I hope this is at least mildly coherent!  Benadryl makes the whole “words putting into sentences doing” interesting!