Friday, September 14, 2018

How to Say Goodbye to Guilt

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:
I even feel guilty for having guilt.  And don't even get me started about Mom Guilt.  

How to Say Goodbye to Your Guilt

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 a chronic disorder such as Ehlers Danlos Syndrome 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 Ehlers Danlos Syndrome 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 Ehlers Danlos Syndrome.

Thursday, May 10, 2018

Too Much EDS Awareness?

May is Ehlers Danlos Syndrome awareness month and in the three 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 three 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.

But I just can't get into EDS awareness month this year.  More and more, I'm seeing posts in my EDS Facebook groups from people who are experiencing roadblocks with doctors who refuse to take their EDS diagnosis seriously, especially if it didn't come from a geneticist.  As more people hear about EDS and realize that it might be the answer to their undiagnosed and unexplained medical issues, doctors are being inundated with patients asking for testing.
Doctors are starting to see EDS as the new fibromyalgia.  Fibromyalgia has become the diagnosis that doctors give when they can't find any other answers.   It's hard to diagnose, tests come back normal, and patients often appear fine despite complaining of severe pain and other issues.  Some doctors even question the validity of it as a real disease.  Now EDS is being put in the same category.  The ironic thing is that EDS is often misdiagnosed as fibromyalgia.  

So how do we combat this new roadblock in raising awareness for EDS?

I'm not sure.  I think that at this point, it has to be up to the medical professionals to properly educate themselves on EDS and how to treat patients with it.  They need to realize that not everyone with EDS looks the same, just as no two zebras' stripes are the same.  EDS is a spectrum and some people are severely disabled by it while others are barely affected at all.  Some doctors are under the impression that people "want the diagnosis" just so they can get on disability and get pain meds and that may very well be the case for some, but for the vast majority of us, we just want to be understood and believed.  
Too Much EDS Awareness? What are your thoughts?
I wish I had a solution for this problem, but I have a feeling that it's going to get worse before it gets better.  In the meantime, hang in there, even if you can't find a doctor who believes you and know that we're all in this together.

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. I have two boys, wild and rambunctious! Seth is 9, he is on the Autism spectrum and he’s a sensory seeker! Sebastian is 6, and he is a lover of life! They keep me on my toes for sure, but I wouldn’t trade it for the world. When Sebastian was 4, he kept having what we thought were growing pains. Initially starting in his legs, the pain spread to his back and neck. After about 6 months of tests, x-rays, warm baths, and doctor visits we landed in the ER. Sebastian woke up unable to get out of bed. He said his legs hurt, his neck hurt and the pain was going down his arms. Our pediatrician wanted a CT Scan of his neck. While not much was done at that visit, this is what got the ball rolling. This was our first look into the world of Ehlers-Danlos Syndrome. From that moment our lives changed forever. In the next 3 months we saw rheumatology, neurology, genetics, cardiology and started Physical and occupational therapy. Genetics found my husband and both sons had a clinical diagnosis of Ehlers Danlos Syndrome, as well as markers for Classical type EDS. Seth has a variant on the gene associated with cEDS and we are awaiting results from the rest of us.

Cardiology cleared them of vascular EDS but when screening Seth, they found a hidden congenital heart defect called AAOCA (Anomalous Origin of the Coronary Artery.) This is the second leading cause in child and adolescent sudden cardiac death. Looking back there were things that make sense now. Sebastian was a really floppy baby, he reached milestones late, and he had a leg length difference that was caused by overly tight muscles around his hip. Seth is extremely hypermobile and he is always looking for deep pressure sensations, cue the sensory seeking! Remember those unique zebra stripes? EDS affects the boys in completely different ways. Seth is very toned, his knees have subluxed but for the most part his joints are stable, he is very flexible and this includes his stretchy skin which scars funny. Sebastian lacks muscle tone, despite being as active as he can be, he has chronic pain in his joints, nerves and muscles, and his skin is velvety soft.
Available in the Sunshine and Spoons Shop
Who would have thought growing pains would have brought us here, to a diagnosis of Ehlers Danlos Syndrome? Our lives have been crazy since, our calendars are filled with therapies and doctor appointments, our home is filled with medicines, creams and equipment trying to prevent pain. Seth recently had open heart surgery to correct the defect that was found. He is healing great and we are hopeful that the EDS won’t have any impact on his healing and moving forward.

Sebastian is in therapy, and we have been told he will need to be in some sort of physical therapy for the rest of his life. Recently with Seth's surgery, we took a break from therapy and we have seen the impact of stopping. Sebastian works really hard, and some days are better than others. Some days, he has trouble sitting up in bed and other days he is full of smiles instead of pain. A recent visit to his pain management Dr has him scheduled for another MRI, this one to check for Tethered Cord. We aren’t sure where EDS will lead us next, but we’ll go there together. I’m thankful we found out what it was early enough to make a difference in my boys’ lives. Sebastian is able to get the help he needs, and Seth’s heart condition was caught before it caused any damage. I tell Sebastian he saved his brother’s life.

Our lives have changed so much and our normal is way different than normal, but it’s ours. And we will get through it one day at a time. If you’d like to follow our story you can find us on Facebook at My Sweet Zebras.

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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.

"Mom, I have a fifty dollar bill in my bank!  I'm rich!"

That was the final straw on the donkey's back.  I asked him to show it to me to prove that he was wrong.  Nano ran to his room, and I could hear him dumping out his money on the floor.  A minute later, he came running back into the room and handed me a fifty dollar bill.  I was stunned.

"Where did you get this?!?!"

"I found it!  It was laying on the ground outside of the dollar store," he said proudly.

At that moment, I remembered the time last summer that I had let him and Katie walk to the dollar store by themselves just a block from our house to buy something with a few dollars they had saved up.  It was right around that time that Nano started talking about his fifty dollar bill.

I was appalled.  When I was that age, I found a five dollar bill laying on the ground outside of the post office and went around asking everybody I saw if it was theirs before some sweet old lady told me that I should just take it home.  I felt guilty for weeks.

My kid found ten times that much money, and all he could think was finders keepers.

How to Make DIY Spend Save Share Banks

We had a long heart-to-heart talk about the right way to handle that situation would have been and then I mentioned that he needed to bring some of that money to church to put in the offering plate and then put the rest in his savings account.

He was not happy with that suggestion as he had big plans to spend his riches, and I realized that it was time to have another talk about practicing good stewardship with money.

How to Make DIY Spend Save Share Banks

At the time, the kids' piggy banks were mason jars with coin slot lids that I had put together for them a few years ago.  I decided that I wanted to switch them over to the Save-Spend-Share style of banks instead.  I checked Amazon and found some cute ones there, but ultimately decided  to try making my own instead.

After mulling over the best way to make the banks for about a week, I was cleaning out the cupboard above the stove (you know, the one that ends up crammed with random water bottles and ice trays) and pulled out an empty eight ounce parmesan cheese container.  Inspiration stuck, and I had a plan.

How to Make DIY Spend Save Share Banks

I wrapped three empty and clean parmesan cheese containers in fun duct tape and then duct taped all three of them together.  Using a permanent marker, I wrote the category and the percentage on each one of the lids.

For our categories and percentages, I chose:
Savings: 50%
Spend: 40%
Tithe: 10%

When the kids got home from school that day, I showed them their new banks and explained how to divide their money up into each category.  They were pretty excited to try out the new system with the money they already had.

How to Make DIY Spend Save Share Banks

How to make DIY save/spend/share banks:

Just six more empty parmesan containers, and I'll be able to make banks for the two younger kids too!  On a completed unrelated note, if you know of any recipes that call for LOTS of parmesan cheese, send them my way...

Other things that would work great for these banks are...
3 ring pencil pouch
Plastic frozen concentrated juice containers
Pringle containers
Mason jars
Deli food containers
Water bottles
Empty spice containers

Or if you want to buy one instead of making your own, here's a bunch of really neat ones!

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Wednesday, November 29, 2017

12 Must See Christmas Movies

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.  

Peppermint hot chocolate, cozy sweaters, twinkling lights, candy canes, pine trees...

You're thinking of Christmas right now, aren't you?

You're welcome.

12 Must See Christmas Movies
One of our Christmas traditions is to watch one of our must-see Christmas movies.  Want to know what made it onto my list?  Here you go!

Monday, November 27, 2017

20+ Places to Buy Adaptive Clothing and Accessories for Special Needs

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 parents who have kids with special needs or a disability, it can be hard to find clothes that work well and are easy to wear.

This list of places that sell adaptive clothing and accessories covers just about everything from G Tubes to wheelchairs to sensory needs.   

Monday, November 20, 2017

Christmas Traditions: Ornaments for Every Occasion From Etsy

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!

Every year on Christmas morning, my kids know that they will find a new ornament in their stockings.  Each of their ornaments mark a milestone they experienced in the past year or note something that they're currently interested in.  This year, Katie will be receiving a basketball ornament as she just started playing basketball, Nano will get a tractor ornament because he's really getting into farming with Hubby, and Anna and Davy will each get a first year of preschool ornament as they both started school this year (Anna is in 4/5 preschool and Davy is in 3/4.)

I have a lot of fun carefully picking out a special ornament every year for each of my children.  Someday, when they move out to their own place, they will already have a collection of ornaments for their Christmas tree.  I hope this is a tradition that they will someday pass on to their own children. 

Christmas Traditions: Ornaments for Every Occasion From Etsy

One of my favorite places to get ornaments is Etsy.  I love how unique every ornament is and how easy it is to find personalized ones.  A great bonus to shopping on Etsy is being able to help support fellow small business owners like me. 

Here are some of my favorite ornaments that I found on Etsy this year...

Wednesday, November 15, 2017

The Best Places for You to Shop Online

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!

It's that time of year again!

Have you started your Christmas shopping yet?

I'm about halfway down with mine and most of it was done on my laptop after the kids went to bed.  Online shopping for the win!

The Best Places for You to Shop Online

I actually do most of my shopping online, even household supplies using Amazon subscriptions.  With four kids and a chronic illness, it's been a lifesaver for me. 

Here are just a few things I love about online shopping...