Monday, October 22, 2018

The Ultimate List of Ehlers Danlos Resources

In case you haven't noticed, I'm kind of passionate about raising awareness and understanding for the Ehlers Danlos Syndromes (which I've been told is now the right way to say it.)  I have this passion for five reasons.

Reasons 1-4: My kids.  Katie (10), Nano (8), Anna (6), and Davy (4) all have Hypermobile Ehlers Danlos Syndrome or hEDS which they inherited from me.  I want them to grow up in a world that I didn't grow up that acknowledges and understands their condition and where doctors know what it is and how to treat it.

Reason 5: Everyone else with EDS.  Most people with EDS spent the majority of their lives being told it's all in their heads when that couldn't be further from the truth.  We're already at high risk for depression and suicide due to living in chronic debilitating pain and all of the other EDS symptoms.  Not being believed or understood makes everything so much worse.

The Ultimate List of Ehlers Danlos Resources

So, with that in mind, I put together a list of EDS resources, printables, freebies, awareness products, etc.

Tuesday, October 16, 2018

10 Facts About Handicapped Parking

I'm 33 years old, and I have a handicapped placard in the glove box of my car.  I got it about a year or so ago, but I've only used it a few times.  There are three reasons for that.  The first is that I only use it on my really bad days when I literally can't handle walking very far.  The second is that often all of the handicapped spots are full, sometimes with vehicles that are parked there illegally.  The third is that I'm scared of backlash because I look healthy and normal unless I'm using one of my mobility devices, and people can be cruel about invisible disabilities.  Stories like this, this, or this seem to pop up at least several times a month, and I know that I just don't have it in me to deal with something like that on my bad days.

So, in light of all the misconceptions surrounding handicapped parking, here are 10 facts about it that might shed some light on their proper use.

10 Facts About Handicapped Parking

1. You can have my placard if you take my disability to go with it.

Friday, September 14, 2018

Letting Go of Your Guilt When You Have a Chronic Illness

This post contains referral links which means that if you purchase from one of my links, I will receive a small percentage of the sale.  Don't worry, this won't cost you any extra!


Just seeing that word makes you feel guilty, doesn't it?

My particular brand of guilt includes things such as feeling guilty for:
  • Working or resting instead of spending time with my kids.
  • Not being able to keep the house cleaner because of a lack of spoons.
  • Making sandwiches for supper for the third time in a week because I'm too exhausted to cook.
  • Not being on top of everything all the time.
  • Feeling like I'm not doing enough.
  • Losing my patience and yelling at the kids.
  • Forgetting to take pictures or video at one of my kids' special events.
  • Passing my crappy genes onto my kids.
  • Not being able to go outside and play with my kids (thanks heat intolerance and POTS!)
  • Not being able to work more.
I even feel guilty for having guilt.  And don't even get me started about Mom Guilt.

Letting go of your guilt when you have a chronic illness

My guilt is compounded by the fact that my body seems to be working against me (during the times when it works at all).  Having chronic disorders such as Ehlers Danlos Syndrome and POTS comes with an extra heaping helping of guilt because, thanks to today's emphasis on perfection and being productive, I often feel like I'm not good enough or worth anything.

But what it really boils down to is that I feel guilty for not measuring up to the world's standards. 

Monday, September 3, 2018

10+ Books About Ehlers Danlos Syndrome

This post contains referral links which means that if you purchase from one of my links, I will receive a small percentage of the sale.  Don't worry, this won't cost you any extra!

When it comes to information on the Ehlers Danlos syndromes or EDS, the selections are pretty slim.  As the disorder is still classified as rare (although it's NOT rare, it's just rarely diagnosed), there just aren't a lot of books about it out there.  However, as awareness is increasing, the number of books has been slowly increasing as well.  I put together a list of the best books to learn more about living with and loving someone with one of the Ehlers Danlos syndromes.

Thursday, May 10, 2018

Too Much EDS Awareness?

May is Ehlers Danlos Syndrome awareness month and in the two years since I was diagnosed, I've thrown myself into it fully each May.  With a shockingly small number of doctors who are EDS knowledgeable and most of the general public having never heard of it, raising awareness is a very important step towards furthering research for EDS.  

For many years, doctors have been very hesitant to diagnose Ehlers Danlos Syndrome because it is considered to be a rare disease, too rare in fact to diagnose or see a case of during their medical career.  However, the truth is that it's not rare, it's rarely diagnosed.  It's also a hereditary genetic condition which means that a parent who has it has a 50% chance of passing it on to each one of their children.  In the case of my family, I passed it on to all four of my children.  EDS is definitely not rare in my family or in many other families either.

In the two short years since my kids and I were first diagnosed with Ehlers Danlos Syndrome, I've noticed a huge increase in the awareness of EDS.  The EDS groups on Facebook are growing in leaps and bounds as more people hear about it and realize that this may be the answer to their many unexplained medical issues.  More doctors actu
ally know what it is even if they don't necessarily know how to treat it, and it's becoming more common for people to respond with, "I know someone else with that too!" when I tell them that I have it.  The Ehlers Danlos Society recently received an anonymous $1 million dollar donation to be used on research of the hypermobile type of EDS which is the most common type. The American Journal of Medical Genetics released new criteria for diagnosed hEDS in March 2017.  This is all huge, and we're making amazing strides.  It's exactly what I and others with EDS have been fighting for.

Friday, March 16, 2018

Meet My Sweet Zebras

Today, Jamie from My Sweet Zebras is guest posting on Sunshine and Spoons! Jamie is an supermom taking care of her two little zebras, and I'm excited to share her family's story with you.

With no further ado, here's Jamie!

Meet My Sweet Zebras

Hi there! I’m Jamie from My Sweet Zebras. Before 2016, I thought Zebras were just black and white striped animals at the zoo. I had no idea that medically speaking being ‘a zebra’ was even a thing. Zebras are similar to one another but unique; each with their own set of stripes. I like to think our story is like that, similar but unique.

Tuesday, January 16, 2018

25+ Products That Make Life with Chronic Illness Easier

This post contains referral/affiliate links which means that if you purchase from one of my links, I will receive a small percentage of the sale.  Don't worry, this won't cost you any extra!

Having a chronic illness definitely makes life harder.  I'm assuming that, like me, you don't have the resources to hire a full-time nanny, chef, housekeeper, personal assistant, etc. either.  So, until I win the lottery (which will probably be tricky to do as I don't even play the lottery), I will have to go on finding products that work for me to make my life with a chronic illness easier.  

25+ Products That Make Life with Chronic Illness Easier

Here's what I've come up with so far.  Some are things I already use, some are on my wishlist (my birthday's in May if anyone wants to just go ahead and buy me everything on my wishlist! Hey, doesn't hurt to try, right?!?) and some are highly recommended by other spoonies.  Feel free to add your own suggestions in the comment section!

Thursday, January 11, 2018

How to Make DIY Spend Save Share Banks

This post contains referral links which means that if you purchase from one of my links, I will receive a small percentage of the sale.  Don't worry, this won't cost you any extra!

For months, Nano kept telling me that he had a fifty dollar bill in his piggy bank.  Obviously, I didn't believe him because where in the world would a 7-year-old have gotten that kind of money?  I figured that he had mistaken a five dollar bill for a fifty and was a little overly optimistic about his financial state.

How to Make DIY Spend Save Share Banks

After months of hearing him brag about his riches, I was getting tired of it.