EDS mama of 4 little zebras and lover of Jesus, chai lattes, and sewing. Blogging about special needs, chronic illness, parenting, and life in general. The mission of Sunshine and Spoons is to help raise awareness for and support special needs and chronic illnesses.
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.
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.
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!
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.
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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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.
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!
Stirring things when I cook or bake is hard. Seriously. The last time I tried to hand stir cookie dough, I ended up hurting my shoulder and my wrist. The B&B I used to work at had a Kitchen Aid mixer, and I miss it so much!
Okay, so this isn't actually a product, but it's a service that has made my life SO much easier. Rather than having to lug stuff home from the store like toilet paper and snacks. I just add them to my Amazon subscriptions, and Amazon sends them to me on whatever schedule I set up.
Scrubbing pans is not always easy for me, which is why I ALWAYS have parchment paper on hand. Line your pans with it before you bake something and it makes clean up super easy, plus it keeps things from sticking.
For those late night bathroom visits where you're afraid to turn on the light for fear of burning your exhausted retinas, there's a toilet light to ensure that you don't trip on your way to the toilet and give yourself a concussion.
33. Rollator My rollator has been a lifesaver on days when my legs are less than helpful with the whole walking and staying upright thing. The seat is my favorite part because it allows me to sit down and rest when I need to even if there isn't anywhere to sit nearby.
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.
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.
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.
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.
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.
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...
This post contains affiliate links, and I will be compensated if you make a purchase after clicking on my links. Thanks for helping me keep this blog going!
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.
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...
Saving money on gas expenses (thanks free shipping!)
Being able to do it in my spare time instead of having to make a special shopping trip.
When I shop online, I always go through Ebates so that I can get money back on whatever I buy. It's been pretty awesome and all I have to do is go through the Ebates site when I shop. I actually have a plugin on my computer that lets me know when a website has a cashback option through Ebates so all I have to do is click on the button, and I'm good to go. You can get $10 right away by signing up here.
And because I'm just that awesome, I'm going to share with you some of my favorite places to shop online :)
1. Amazon You can pretty much get anything on Amazon! I seriously cannot say enough good things about it. It's made even more awesome with Amazon Prime which I love for its two day shipping (you know, for those times when I forget that we have a birthday party that weekend) and for the Subscribe and Save option. With Amazon Subscribe and Save, I can add things to my subscriptions and have them sent to me automatically at time intervals that I select. Never having to worry about running out of toilet paper or worry about remembering to pick some up while I'm at the store is kind of awesome.
2. Etsy I love supporting small shop and finding things that are unique. I know that every time I buy something on Etsy, I'm helping someone who is running their own small business and, as a small business owner myself, that makes me really happy.
3. Target Target also has a subscription service that I use for diapers and wipes (Up & Up diapers are my favorite brand). With the Redcard I always get 5% off of everything I buy, plus free shipping on all orders. Is there anything better than browsing Target in your pajamas while relaxing on your couch?
4. Zulily I love stalking the sales at Zulily to see if some of my favorite brands or products are on the site. I've gotten a lot of clothes for me and the kids along with toys and gifts on Zulily.
5. Gymboree Gymboree is at the top of my list for kids' clothes. Their stuff is very high quality and super cute. Just about every time they have a sale, I buy a ton of stuff for my kids to grow into. I also love that I can get outfits for my kids that coordinate with each other.
6. Shutterfly It's easy for me to take a ton of pictures with my phone, but they don't do much good just sitting in my online photo gallery. Shutterfly makes it easy to print them to hang on my picture wall and to order photo gifts for grandparents.
7. Dollar Tree Yup, everything's really just a dollar! It's a great place to get business or party supplies, home goods, small gifts, etc. Dollar Tree was pretty much my favorite store every when I was a kid because it was the only place where I could afford to buy things.
8. Sunshine and Spoons Shop And of course, I gotta throw this one in here too. I have at ton of shirts from my shop in my closet so it's not just a shameless plug!
This post contains affiliate links, and I will be compensated if you make a purchase after clicking on my links. Thanks for helping me keep this blog going!
When my youngest son Davy was born, my three older kids were 6, 4 and 17 months old. The next year or so was very hard on my whole family as Davy spent countless hours at doctors' appointment, was hospitalized five times and, and required one-on-one care during most of his waking hours. The guilt of not being able to care for all my kids' needs was crushing and made even worse when people would "helpfully" point out that I had three older kids who needed me too. I knew that having a medically complex, special needs sibling was hard on my kids and I didn't want them to resent him or feel left out.
When Davy was around six months old, I found a book about kids with G Tubes on Amazon and got it to read to the older kids. It helped them see that their brother's button wasn't scary and other kids had them too. That got me thinking of how helpful books could be for kids who have siblings with special needs.
Keep reading for a list of over 30 books for kids with special needs siblings.
With all that, there's no shortage of unsolicited advice and cures.
"You only have your disease because you've 'claimed' it."
"You'd feel better if you would exercise more and eat better."
"Your *insert condition here* could be cured if you tried this supplement."
"Your EDS was caused by vaccinations."
Thanks to all the helpful advice I've received, I was able to put together a list of things that will cure any problem you have. You're welcome.
1. Essential Oils No matter what you have, there's an oil for that! Don't get me wrong, I love essential oils and use them all the time, but please stop trying to tell me that they can cure everything.
I don't know much about Plexus, but I've been told that it will change your life. I mean, the brother's friend's mother-in-law's niece of the person trying to sell it to me was totally cured of everything they ever had.
Obviously, the reason why my kids and I have so many health issues is because I haven't prayed hard enough for healing. Except that God isn't a vending machine and sometimes He says no to prayers like that because He knows that there's a deeper purpose behind your struggles.
4. Positive Thinking
It turns out that I only have health problems because I think I do. If I were to just get myself into a positive state of mind and think about how healthy and pain-free I am, it would happen! The same went for Davy's feeding issues that required a g tube...he only needed it because I believed he did.
So apparently, the genetic condition that was written into mine and my kids' genes from conception was actually caused by our vaccinations. Because obviously, that's how genetics work.
Did you know that getting more exercise can help you feel better no matter what your problem is? Muscle pain? Exercise! Brain fog? Exercise! Broken leg? Exercise! And yeah, exercise can definitely make you feel better, but only if it's done properly and in the right amounts. That's especially important with EDS.
Gluten free, vegan, sugar free, raw foods, organic, etc. You name it, I've been told to try it. While eating healthy can definitely be helpful, going on a gluten-sugar-dairy free, all organic, vegan, grown-by-monks-in-the-mountains diet isn't going to cure my issues. Sorry.
8. Probiotics I love probiotics! Davy had constant yeast infections on his g tube site thanks to frequent antibiotics when he was younger so we started probiotics, and they made a huge difference. You know what though? They didn't cure him like I was told they would!
9. Ice cream I can't tell you how many people told me that Davy wouldn't need his feeding tube if I just fed him ice cream. Okay, first of all...I did feed him ice cream. Second of all, no. Just no.
Okay, I admit that this one is bit of a stretch. As buttery soft as the leggings are, they can't cure anything. But believe it or not, some of the "cures" I've been told to try for me and my kids are as ridiculous as this suggestion is.