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Showing posts from June, 2017

Personal Experience with Saline Infusions for POTS

I've been pretty sick.  From the very beginning of February until very recently, I was essentially bed bound.

My Postural Orthostatic Tachycardia Syndrome (POTS) symptoms were completely out of control. So...

I started getting intravenous (IV) hydration a.k.a. saline infusions once a week. My cardiologist, who specializes in POTS, prescribed them and faxed the prescription to my local primary care doc who also doubles as my migraine specialist.

My local doc rewrote the prescription so I could have the infusions locally, as my cardiologist is about three hours away.

That would not be a convenient weekly drive.

It wasn't horribly fun to get a liter of saline over 3 hours once a week, but I only did it four times.  
I went to two different infusion center locations, the first in the downtown hospital location, and the second at the newer more suburban hospital location.

The downtown location had nurses more skilled at starting the IV, but the newer location had private rooms and…

Medication Organization 101

Organizing your medications can be a daunting task especially if, like most people with a chronic illness, you take multiple medications at different times throughout the day.  I've tried everything to keep my prescriptions and other medications organized.  I think I've owned every pill organizer ever created.  It can be rough managing refills or even just trying to find physical space for all the bottles.

Here are some pro tips to make this process a bit more manageable.
This post contains affiliate links, for more information see the full disclosure under "links to other sites" or scroll to the very bottom of the page.

Keep All Your Medications  Especially Prescription Bottles  in One Place 
This may seem at first like a no brainer, but it can be easy to scatter small bottles around the house.

Pretty soon, if you aren't careful to corral your bottles into a single designated area, you start to lose them in your car, a purse, a suitcase.

Basically, it doesn'…

The Mascots of Chronic Illness

Have you ever heard of the yuru-chara?
If you haven't... They are mascots Japan created for places, industries, and events both public and private.

The idea was to boost tourism, and although the goal wasn't quite achieved, people around the globe have fallen in love with these goofy, adorable characters.

They have a mascot for just about everything.
So I got to thinking... What if there was a mascot for Chronic Illness? What would a Chronic Illness Mascot look like?  What traits would this mascot have?

Well, I am proud to announce that I have worked diligently on behalf of the chronic illness community to create a number of mascot suggestions.

Introducing, THE The Sensory Overload Ostrich
When it is all too overwhelming and you can feel absolutely everything (and all of those everythings hurt), your chronic illness mascot is the Sensory Overload Ostrich.

If this bird gets too overwhelmed he buries his head in the sand and says "Nope!" "not today."

It is …

How I feel about people living with chronic illness

Today I want to share how I feel about anyone living with chronic illness.  I admire you.   I know first hand how rough this road can get.  We are warriors and survivors, and sometimes we don't appreciate or celebrate ourselves enough.  So today and everyday let's give ourselves some love and appreciation! If you have a chronic, rare, or invisible illness, I admire you. (extra points if you have all three!)
If you take care of someone or love someone with a chronic illness, I admire you.

If you got out of bed today, I admire you.
If you couldn't get out of bed today, I admire you!

If you got to the doctor's office, or scheduled some appointments today, I admire you.
If you had to skip the doctor and stay home, I admire you.

If you did some kind of housework today, I admire you.
If you left the dishes dirty, and the laundry undone, I admire you.

If you took care of children today, I really admire you.
If you needed to be taken care of today, I admire you. (and I'm …

The Problem of Positivity

How many times has someone told you to "stay positive"?  As if your illness could be cured if you simply refuse to acknowledge how rotten it is to hurt 24/7 and have friends, family, and strangers crap all over you.  Thanks for the invaluable advice.  I was once told by a friend, after pouring my heart out to her for hours about my life and my symptoms, "you just need to change your attitude."  But, she had no idea what kind of attitude I had because she was not part of my life or my health journey.  That is my huge issue with this emphasis on positivity.  

It's just another way to shut us up When someone is done hearing about our chronic illness woes, they tell us to "be positive."  What they really mean is stop telling me about all the things in your life that make me sad or upset.  When people ask me what has been going on in my life I have a few options.  I can be honest and tell them that I have been sick and am mostly depending on a wheelchair.…

Must Haves for any Spoonie's Bedside Table, Travel Kit, or Hospital Bag

What do you keep on your bed-side table?  If you're chronically ill, keeping items within arm's reach becomes more important than ever before.  

And, if like me, you have periods of time when you spend so much time either in bed or on the couch, that you jokingly refer to these resting places as "your office," you understand the importance of a well stocked bed-side table.
These are the items I have found necessary to have on my bedside table, with me when I travel, and in any overnight bag.   This post contains affiliate links.
Earplugs From migraines to insomnia, earplugs are a must for me.  I use them at home and on the go.  Earplugs have gotten me through my senior prom and many an airplane flight. 
These are the earplugs I currently use.  I usually avoid the pink, marketed towards women brands, but I've tried a few types and these are a slimmer shape that fits my ear better.  I don't know if that has anything to do with my gender, and I certainly don&…