Thursday, October 19, 2017

My POTS Story: How an EDS Diagnosis Led to POTS

This post contains affiliate links and I will be compensated if you make a purchase after clicking on my linksThank you for helping me keep this blog going!

I remember sitting in the shade as a kid while my siblings ran around and played in the sunshine.  I had no interest in joining them because the sunlight made me feel "funny."  I didn't know it at the time, but it was the first symptom of Postural Orthostatic Tachycardia Syndrome or POTS.

Since I was a teenager, I've had chest pains.  They're sudden and sharp, and they feel like I'm being stabbed in the heart.  After mentioning it to my doctor, she ordered an echocardiogram and an EKG, both of which came back normal so I wrote it off as me being weird again.

My POTS Story: How an EDS Diagnosis Led to POTS

When I was 18, I went to a two day Christian music festival and camped in a tent with some of my friends.  It was hot and sunny the whole time, and I was absolutely miserable.  I ended up sleeping in the tent most of the time, so dizzy and nauseous that I could barely stand.  When I was able to get out and listen to some of the concerts, the sun was so bright that I couldn't see and I got a headache from squinting so hard.  I thought I'd be fine when we got home, but a few weeks later, I was still so fatigued that I couldn't keep my eyes open and not feeling well at all.  I went to the doctor who diagnosed me with a severe chronic magnesium deficiency.    

POTS Warrior shirt from Sunshine and Spoons
See the whole "POTS Warrior" collection in the Sunshine and Spoons Shop

I have never fainted, but I've always had issues with being dizzy and lightheaded.  I black out easily and it usually takes me a minute to feel okay again after I stand up.

With each of my four pregnancies, my symptoms got worse.  After my fourth baby, Davy was born, he had a host of medical issues so my own health got put on the back burner.  But by the time he was a year and a half older, he was doing much better and even got his feeding tube removed.  I realized that it was time to figure out what was going on with me.

My POTS Story: How an EDS Diagnosis Led to POTS

I wrote down a list of my symptoms which ended up being two pages long and included hypermobility, joint pain, dislocations, subluxations, back pain, muscle pain and spasms, GI issues, chronic fatigue, chronic pain, headaches, a severe heat intolerance, an inability to regulate body temperature, easy bruising and scarring, dizziness, brain fog, and more.  I scheduled an appointment with my primary care doctor and began researching my symptoms so I could go into the appointment prepared.

Dysautonomia Warrior shirt from Sunshine and Spoons
See the whole "Dysautonomia Warrior" collection in the Sunshine and Spoons Shop

One of the conditions that caught my attention was Postural Orthostatic Tachycardia Syndrome.  I added it to my list of possibilities and even took the poor man's tilt table test at home.  The results definitely showed that it was something worth looking into.

When I saw my doctor, she took one look at my list and referred me to a neurologist.  I asked the neuro doctor about POTS and she scheduled me for a tilt table test, the standard test for POTS.
      
The day of the tilt table test, I woke up feeling unusually good.  The elevators from the parking garage to the clinic didn't even make me feel dizzy like they generally do.  The test went well, which surprised me.  Not surprisingly, the results came back normal and negative for POTS.

But You Don't Look Sick shirt from Sunshine and Spoons Invisible illness
See the whole "But You Don't Look Sick" collection in the Sunshine and Spoons Shop

The neurologist ran a few other tests as well, which all came back normal so she referred me to a rheumatologist who was booked out about six months.

Instead of sitting back and waiting for my appointment, I kept researching, hoping to find some answers.  And then, I posted a picture on Instagram of Davy's hypermobile ankle and someone asked if he had Ehlers Danlos Syndrome.  I started researching it and realized that it fit both his and my symptoms perfectly.  At his next genetics appointment, I asked the geneticist about it and it was like a light went on in the room.  He and I were both unofficially diagnosed that day.  Later that summer, Davy, two of his older siblings, and I were all diagnosed with Ehlers Danlos Syndrome.

My POTS Story: How an EDS Diagnosis Led to POTS

I threw myself into setting up specialist appointments, therapies, and more and for a while, mostly forgot about POTS.  But it stayed in the back of my mind and once things slowed down on the medical front, I brought it up to my EDS doctor.  She agreed that despite the results of the tilt table test, (which can be wrong!) my symptoms definitely sounded like POTS.  EDS often comes with POTS as well so it made sense.  She diagnosed me with it that day.

----------------------------------------------------------------------------------------------------------
My POTS Story: How an EDS Diagnosis Led to #POTS: http://bit.ly/2hLb3Mm 
----------------------------------------------------------------------------------------------------------

You can learn more about POTS here.

I'd love to hear your POTS story!  Please feel free to share it in the comments.






You might also enjoy:




























Monday, October 16, 2017

Just Like Me: Toys for Kids with Special Needs

This post contains affiliate links, and I will be compensated if you make a purchase after clicking on my linksThank you for helping me keep this blog going!

Kids love it when their toys look like them.  From hair and eye color, to any special needs that they might have, it helps them feel accepted.  They can also help kids feel less afraid of their differences or medical conditions.

My son Davy was only two months old when he had surgery to get his G Tube.  The day before his surgery, a nurse came into his hospital room with a stuffed bunny that had a G Tube just like the one Davy would be getting.  I practiced hooking the extension tube up on the bunny before and after Davy got his feeding tube which was much less stressful than having to practice on my screaming baby.  He got his G Tube out when he was 18 months old, but the bunny still sits on top of his dresser.  I plan to add it to his memory box when he gets older.

Just Like Me: Toys for Kids with Special Needs

Toys that are adapted or created to have special needs or disabilities shouldn't just be for the kids who have them though.  What greater way to teach your child that it's okay to be different, have a feeding tube, or wear leg braces than for them to play with a toy like that?

Friday, October 13, 2017

Handsocks and Eczema Awareness Month

I was compensated in the form of product for this post.  Nevertheless, everything in this post is my honest opinion.

October is Eczema Awareness Month.  Mild eczema is usually no more than an annoyance, but for people who have severe eczema, it can be downright miserable.

With four of us diagnosed with asthma, eczema is also a common issue in our family.  Davy's eczema is definitely the worst though.

Handsocks and Eczema Awareness Month

The poor kid has eczema from head to toe and when it's flaring up, he's so miserable that he can't sleep at night.  He scratches until his skin is raw and open.  I do a skin care routine for him each night that includes a layer of triamcinolone (a prescription steroid cream), vaseline, and then vanicream.  The triamcinolone often burns when it's applied and so understandably, Davy hates his skin care routine.   Periodically, his eczema will flare-up so severely that nothing I do at home can get it under control again.  The only thing that works at that point is a round of Prednisone (an oral steroid) and antibiotics.

To keep Davy from scratching and rubbing the cream and lotion off of his skin after I put him to bed, I put him in footed pajamas like these.  However, he'd still scratch and no matter how short I kept his fingernails, he managed to scratch hard enough to draw blood every night.  I tried putting socks on his hands, but he pulled them off the minute I left the room.

Handsocks and Eczema Awareness Month

When Casey, founder of Handsocks, offered to send me some of her Handsocks to try on Davy, I was pretty excited.  I was desperate to find a way to keep Davy from scratching his eczema at night and Handsocks looked like they'd solve the problem.

Guess what?

They worked!!  No matter how hard he tried, Davy couldn't pull them off.  Having a way to keep him from scratching his eczema meant that it could finally heal better.

So here's the lowdown on Handsocks...

Casey, a mom of two, came up with the idea after using a pair of ski socks to keep her daughter's hands and arms warm during the winter.  They come in sizes newborn through 3T and in a variety of designs, including college football themed ones.  The soft minky mittens fold back so kids can still use their hands to play or eat without taking the Handsocks off.  There are no snaps or velcro to keep them on, but they're stretchy enough that kids and babies can't pull them off.


Handsocks and Eczema Awareness Month

For each pair of Handsocks purchased, a donation is made to Orphan's Promise, an organization that provides shelter, medical care, food and education to orphans in the US and around the world.

----------------------------------------------------------------------------------------------------------
What are Handsocks? Find out here! http://bit.ly/2yH351I @sunshineNspoons @handsocks 
----------------------------------------------------------------------------------------------------------

Just a few of the uses for Handsocks are:
  • To keep little ones from scratching eczema, rashes, or other skin conditions.
  • To keep hands and arms warm in cold winter weather.  Babies and kids often pull off their mittens leaving their little hands exposed to harsh conditions, but Handsocks stay on!
  • To keep little ones with medical conditions from pulling out their feeding and/or oxygen tubes.
  • To protect fingers from little ones with oral fixations who like to chew on their hands.  
You can find Handsocks on Facebook, Twitter, Instagram, and Youtube.  Don't forget to subscribe to get discounts and updates!

What would you use Handsocks for?









Thursday, October 12, 2017

What Is Life Like with ALS?


I have Ehlers Danlos Syndrome and it can make being a mom hard.  My kids know that there are days that Mommy has lots of owies and needs to rest.  I can't do a lot of activities with them like take them to the park or go for walks with them.

My EDS has given me a small taste of what it's like to be a mom with Amyotrophic lateral sclerosis or ALS (also known as Lou Gehrig's Disease).  Sarah from Speed 4 Sarah was diagnosed with ALS when she was 33 and her daughter was just two years old.


ALS is a progressive neurodegenerative disorder.  Early symptoms include muscle cramps and twitching, weakness in the limbs, and difficulty swallowing or speaking.  As it progresses, the muscles atrophy and eventually become paralyzed.  The survival rate is generally 2-5 years after diagnosis.

In an article for CNN about her journey navigating motherhood with ALS, Sarah writes: "At first, I was drowning in my inability, in all the ways I thought I would fail her as a mom.  Then something unexpected started to happen.  The things I couldn't do for her, she started to do for herself.  When she was two, she dressed herself.  By age three, she was opening doors for me and helping with groceries.  At 4, she could make a quiche, and these days, she folds laundry and cleans her room with only the slightest bit of prodding."

I'm teaming up with the ALS Therapy Development Institute and Linqia to raise money for ALS research with the #whatwouldyougive campaign.  It challenges people to temporarily give up an ability such as using their arms or legs to get a small taste of what life with ALS is like.


Are you ready to join the fight?  Donate here and share the #whatwouldyougive campaign on social media and let's #endALS.  Click here to learn more about ALS and who it affects.

----------------------------------------------------------------------------------------------------------
Support ALS research and join the #whatwouldyougive campaign: https://ooh.li/69de6e4 #sponsored #EndALS @ALSTDI @sunshineNspoons
----------------------------------------------------------------------------------------------------------

Together we can fight ALS!





Tuesday, October 3, 2017

Giving Back Program Pick for October

In the past, I've selected March as a month to give back by donating a percentage of all sales in the Sunshine and Spoons Shop to a foundation or charity organization.  But now it's time to up the ante.

From now on, I will be selecting a different organization each month to which to donate 10% of all proceeds from the Sunshine and Spoons Shop during that month.  Each month, the new organization will be posted here so you can see who and how your purchases can help.  I'll also post the total from the month before.

As October is Dysautonomia Awareness Month, a cause that is dear to my heart (pun intended for those of you with POTS, haha) 10% off the proceeds from all purchases during the month will be donated to Dysautonomia International.


Be sure to check out the dysautonomia collection at the Sunshine and Spoons Shop to help raise awareness for and continue to fund research for dysautonomia.  Remember though that ALL purchases count towards the donation amount.

----------------------------------------------------------------------------------------------------------
@sunshineNspoons is donating 10% of all shop proceeds to @Dysautonomia International this month!
----------------------------------------------------------------------------------------------------------

Have a suggestion for next month's Giving Back Selection?  Leave it here!










Monday, October 2, 2017

What are Dysautonomia and POTS?

Did you know that October is Dysautonomia Awareness Month?

Let me back that up a little....do you know what dysautonomia is?

If you said no, you're not alone.  Most people have never even heard of it.  I didn't know what it was either until I was diagnosed with it.

What are Dysautonomia and POTS?