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The #1 Question NOT to Ask People with Chronic Illness This Holiday Season

The #1 Question  NOT to Ask People with Chronic Illness  This Holiday Season
The holidays are a time for family gatherings, and family gatherings inevitably lead to probing questions about everyone’s lives.

Just as every senior in college hates to be asked about their plans after graduation, or if they have a job “lined up,” and newlyweds hate to be asked when they plan to have children, there are questions that people with chronic illnesses are used to being asked, and get tired of answering.
Every family get-together without fail, all the relatives who once pinched cheeks and tousled hair now gather ‘round me and ask “How do you feel?”
I hate this question, and I’ll give you five reasons why, because I understand that at the surface it seems quite innocent, and reasonable to ask such a question.
But I am being singled out by it.No one else is being asked how he or she feels.
My friends and family are asking because they know about my health issues and they want an update on how things…
Recent posts

Five Ways To Hydration This October

October is Dysautonomia Awareness Month
It's time to #MakeNoiseForTurquoise

In fact, On October the first, Dysautonomia International hosted a Celebration on the Canadian side of Niagara Falls to mark the beginning of Dysautonomia Awareness Month, and they lit the falls a beautiful shade of turquoise.

So in honor of this beautiful month of October, I thought I'd write a Dysautonomia themed post.
My form of Dysautonomia is POTS.

Yanno, Postural Orthostatic Tachycardia Syndrome.  Duh.

Anyhoo, for many of us with POTS, hydration is a way of life.   When we think POTS, we think salt and water, and awful compression tights, and a whole lot of fainting.  

Before I get into my hydration tips, PLEASE understand that I am not now, nor have I ever been a doctor.  I am not qualified to give medical advice.  What follows is simply my experience as someone with Dysautonomia, and what I have heard from other people with Dysautonomia.  PLEASE, discuss all treatments with your doctor before …

A Silly Poem for People with Chronic Illness

Hello spoonies and friends!
Please enjoy this silly lyrical poem about my trusty heating pad and the pain relief it brings me.
I bet some of you can relate, and hopefully you'll have a chuckle or two.


An Ode to My Heating Pad

Oh, heating pad,  your warm hugs ease  my aches and pains. I need your healing squeeze When my feet get cold, or when I get one of my migraines.


From arthritis to subluxations, you've nursed me through. When I find my muscles tied, I cuddle up to you. It's so nice and toasty, with you by my side.


Due to my poor circulation, I'm often very cold. When my thyroid acts out, you are too hot to hold. Still, you know I'll be back,   it's your gentle hugs I'm mad about.




So what did you think?  Did it make you laugh?  I hope so :)

Are you a heating pad person, or and ice pack fan?  I'd love to know!  Leave a comment!!

Wishing you Healing Hugs And Hope

My Chronic Illnesses as Candy Bars

Having multiple Chronic Illnesses isn't very fun.
But, you know what is?

Candy!
So I am going to try and choose a candy bar to represent each of my main diagnoses  (Lyme, POTS, EDS, CFS, Fibromyalgia).
This post contains affiliate links (pictures) see full disclosure under "links to other sites" or scroll to the very bottom of the page

Lyme- Take 5 by Hershey
Lyme throws so many symptoms your way, it's hard to tell what's going on at any given moment.

It affects every body system, and it's co-infections bring along their own lists of complications.

It is called the great imitator for good reason.
With so many symptoms attacking every body system, it is easily confused with other illnesses like lupus or MS.

I chose the Take 5 bar to represent Lyme because it has pretzels, peanuts, peanut butter, caramel, and chocolate.

It's like the candy bar is attacking all your taste buds the way Lyme attacks all your body systems.   You get salty, sweet, crunchy, smo…

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 …