Tag Archives: spoonie life

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!

 

 

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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!

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 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!

POTS Diagnosis and Holes In The Health Care System

As I mentioned briefly in my last post, I was recently diagnosed with POTS.  POTS stands for Postural Orthostatic Tachycardia Syndrome.  It’s a form of dysautonomia, which is an umbrella term for diseases that affect the autonomic nervous system.  POTS is fairly common in people with fibromyalgia.  There is so much I want to say about all this but I’m exhausted and my brain is full of cotton balls at the moment, so this might end up being relatively short.

Out of all the fibro-induced diagnoses I’ve received in the past year and a half, POTS is definitely the most frustrating.  I have to constantly drink electrolyte solution and eat tons of salty snacks just to be able to move around a little bit each day.  Recently it’s been discovered that people with dysautonomia often have extremely low blood volume, and therefore patients could see improvement with partial or whole blood transfusions as well as supplemental oxygen.  (Because of the low blood volume, many people with dysautonomia don’t get adequate oxygen dispersed evenly throughout their whole body.  My limbs will actually turn blue and breathing gets extremely difficult if I don’t take my medication.)

The problem is the science is far ahead of the insurance companies at this point.  Most insurance companies aren’t willing to cover transfusions for people who have normal blood counts, or oxygen for people whose O2 levels aren’t dangerously low.  I’ve been asked if this is the doctors’ fault, and it’s not.  Doctors do not determine how much a treatment or medication costs.  Insurance companies make that decision.  I am beyond frustrated with the American health care system right now.  Medical care should cost a fraction of what people are currently paying.  People living in one of the richest countries in the world should not be going into debt for their medical care.

As for my personal POTS treatment plan, that’s a little up in the air right now, because of the insurance crap.  My daily POTS med is inexpensive and actually does something, so I will definitely keep taking it.  I’ll be seeing a cardiologist in August.  I also plan to see if Mayo Clinic is currently doing any research studies on medications or treatments, since it’s close enough that I could be there and back in a day if need be.  Research studies are free for participants and sometimes you even get a stipend.  At first I was extremely hesitant to talk about all this, but then I decided that if it helps even one person, it will be well worth it!