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.
For years, I struggled with how to study my Bible. Reading a quick two-minute devotion in the morning seemed like eating a piece of candy instead of a full meal and reading through a chapter or two of the Bible didn't really seem to stick either. I'd put it down when I was done, and that would be it for the day. In 2015 though, I attended a women's conference and what I learned during one of the workshops changed the way I do my devotions completely.
Courtney Joseph, founder of Women Living Well, spoke on the topic of how to study your Bible for busy moms. Since then, I've learned a lot about the subject (and am still learning.)
Quality of quantity. You don't have to power through a whole chapter of the Bible at a time. If there are a couple of verses that stand out to you, focus on them that day.
Every piece of Scripture is applicable to ME.
Commentaries and study Bibles can be very helpful, but remember that they were written by people. Fallible, imperfect people just like me. Weigh everything you read and hear against the Bible.
Make God part of your everyday conversation. At first it may feel forced, but the more time you spend with Him and the more you practice making Him a part of your life, the easier it will become.
Practice making prayer a true conversation and not just a quick "Dear God, I need this and help this person get better. Amen." I keep a running prayer list on my phone of praises, requests, etc. I've also found it helpful to set my timer for five minutes and spend that time praying so I don't rush through it.
Courtney Joseph introduced me to the SOAK method of Bible study, and I've been using it ever since. The letters in SOAK stand for Scripture, Observation, Application, and Kneel in prayer. I've also heard it referred to as the SOAP (Scripture, Observation, Application, and Prayer) method, but I like SOAK because it reminds me that I need to soak in God's Word.
Let's break it down a little bit more.
S-Scripture. This is the Scripture that you're reading that day.
O-Observation. This is your observations from the Scripture you read.
A-Application. How does this Scripture apply to you?
K-Kneel in prayer. Spend some time in prayer. I usually write a short prayer regarding what I learned in my devotions that day and then spend five minutes praying through my prayer list.
Please ignore the fact that I have super messy handwriting...this is why I normally type instead of handwriting things, lol.
I've found that it also helps to have some accountability. I have a secret Facebook group for me and a couple of friends to study the Bible together, learn from, encourage, and pray for each other.
I've had a printable devotional using the SOAK method available in my shop for a while, but I just changed the price so now it's free and always will be! I hope you enjoy it and are able to use it to grow your relationship with Christ. You can find it here or by clicking on the graphic below.
I'd love to hear how you study your Bible. Share your tips in the comments or on Facebook!
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. I want them to grow up in a world that I didn't grow up in...one 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.
So, with that in mind, I put together a list of EDS resources, printables, freebies, awareness products, etc.
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.
1. You can have my placard if you take my disability to go with it.
2. Handicapped parking isn't available just because you can't find a close parking spot. I don't care if it's just sitting there empty. It's not for you.
3. No, you can't use someone else's handicapped placard if they're not in the car. Once again, it's not for you.
4. When I see a car parked illegally in a handicapped parking spot, the first thought that goes through my head is "What an inconsiderate jerk." The second thought is "Where's my phone so I can report this?"
5. Handicapped spots are not for your quick 5 minute errand. It's just as illegal to park there for 5 minutes as it is for 8 hours.
6. Yes, it is still illegal for you to park in a handicapped spot even if you're sitting there waiting for someone else, unless that someone has a placard.
7. If someone has a handicapped placard, they have the right by law to park there. You are not their doctor, you don't get to decide if they look "disabled" enough. If you're jealous of their close parking spot, refer to #1.
8. Those handicapped spots that have the yellow stripes beside them...those are for individuals who need space to get their mobility devices in and out of the vehicle. Even though I have a handicapped placard, I avoid parking in those spots out of courtesy to others who may need them.
9. Some people who park legally in handicapped spots look completely healthy. Sometimes being able to park in that close spot is the only way they're able to survive a trip to the store without collapsing.
10. Handicapped spots are not just for people in wheelchairs. They're for people whose doctor has deemed that it is not safe for them to walk long distances. The universal symbol for disability has definitely contributed to that misconception. They're also not just for elderly people. Sometimes even kids need them.
I even feel guilty for having guilt. And don't even get me started about Mom 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.
But guess what? That doesn't matter. Instead I should be asking myself, "Do I measure up to God's standards?"
It's time to make a distinction between bad guilt and healthy guilt. You read that right. Yes, it's actually good to feel guilt sometimes! Some of those things you feel guilty for are because God's giving you a little nudge.
And going back to the guilt that is brought on by being chronically ill...that's caused by taking my focus off of what God says about me in the Bible. God says that I am a child of God (I John 3:1-2), made in His image (Genesis 1:27), and created by Him (Psalms 139:13). My body is a temple of the Holy Spirit (I Corinthians 6:19) and God is focused on my heart rather than my physical body (I Samuel 16:7).
God created me for a specific reason. I may not be able to do everything that everyone else can do but I don't need to feel guilty for that because God has created me (and you!) to do what He has set for me to do. As long as I'm fulfilling my purpose in God, nothing else matters, especially the world's yardstick.
For we are His workmanship, created in Christ Jesus for good works, which God prepared beforehand, that we should walk in them.
It's time to change my mindset. Instead of feeling guilty each day for what I'm doing or not doing, I'm going to focus on God. I choose instead to live each day, each moment for Him alone. I'll focus on the healthy guilt that encourages me to change to be more like Christ and stop focusing on how I don't measure up to what the world says I should be.
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 as well. I put together a list of the best books to learn more about living with and loving someone with Ehlers Danlos Syndrome.
Book description from Amazon: Kevin Muldowney, MsPT has been treating people with Ehlers-Danlos Syndrome since 2005. As a physical therapist, he has developed an exercise protocol to help stabilized the many joint subluxations/dislocations associated with this genetic disorder. This book is intended for the person diagnosed with EDS to both inform them about the healthcare team needed to properly treat them as well as to guide both the physical therapist and their patient with EDS through the Muldowney exercise protocol. This book will cover such topics as: how joints sublux in this population, how to find the right physical therapist, how to exercise without injury and what physical therapy techniques works best. By the end of this protocol people with EDS should be better informed about what is going on with their body and how to make it better.
Book description from Amazon: As a followup to his previous best-selling book, "Issues and Management of Joint Hypermobility: A Guide for the Ehlers-Danlos Syndrome Hypermobility Type and the Hypermobility Syndrome," Dr. Tinkle has created this handbook with several contributors to expand insights into the understanding and management of Ehlers-Danlos Syndrome Hypermobility Type and the Hypermobility Syndrome.
Book description from Amazon: I had never heard of Ehlers Danlos Syndrome and yet, I was born with it. Why then, was I only diagnosed in my 40's? In this book I look back at each decade of my life and highlight all the symptoms and signs that could have lead to a much earlier diagnosis. If only someone had taken the time to look at the big picture. Instead, the various doctors I saw over the years treated each symptom separately. They were looking at the trees - but Ehlers Danlos Syndrome is a forest!
Book description from Amazon: The following story was written in 2010 by my daughter Alexa who passed away on October 11 2011 from complications due to Ehlers-Danlos Syndrome (EDS). Most people do not even know that EDS exists and, for that matter, most doctors unfortunately do not understand it and often diagnose it as a psychiatric issue versus a disease/illness. I hope this story increases awareness of EDS and related disorders – perhaps it will inspire people to understand that many diseases are not observable and that they need to be more compassionate towards others.
Book description from Amazon: Special Like Me… Ehlers-Danlos Syndrome is uniquely designed to assist parents, caregivers, and professionals facilitate conversations with children who have Ehlers-Danlos Syndrome (EDS). This book is about a little boy's journey from bumps and bruises to diagnosis and beyond. The goal is to show EDSers and other children they are beautiful and amazing people that they can manage anything they set their mind to.
Book description from Amazon: The doctors said I had unconfirmed haemophilia. People said I was clumsy, a clown, an accident waiting to happen. They were wrong. I have endured a multiplicity of injuries including: 200 stitches; a broken femur; broken bones in my feet; 3 sprained ankles; several dislocated kneecaps; ruptured knee ligaments; a broken scaphoid; traumatic bruising to my shin and a dislocated shoulder. These are the presents that EHLERS DANLOS SYNDROME bestowed upon me. At fifty eight years of age I had had enough. I lay on the floor in my garage with the fallen ladder as my companion, listening to the siren of an approaching ambulance. I thought to myself “I have to find a way to make all this stop. If I survive.”
Book description from Amazon: An inspirational collection of stories, filled with devastation, heartbreak, triumph, and strength as written by those affected by different types of Ehlers-Danlos Syndromes.
Book description from Amazon: Maybelle Dawson longs for normalcy and belonging. Often misunderstood, she struggles with a rare disorder, labeling her a Medical Zebra. Maybelle’s happiness and well-being threaten to slip through her fingers as she battles to take control of her life. She faces a never-ending battle on her journey to find love, courage and friendship in a world lacking acceptance. With the guidance of her guardian angel, Maybelle finds her way out of emotional and physical isolation to discover lasting love and amazing friendships. A Zebra Like Me is the story of one teenager’s battle with Ehlers-Danlos Syndrome, a disorder affecting one in five thousand people.
Book description from Amazon: You Don’t LOOK Sick!: Living Well with Invisible Chronic Illness chronicles a patient’s true-life accounts and her physician’s compassionate commentary as they take a journey through the three stages of chronic illness—Getting Sick, Being Sick, and Living Well. This resource helps you focus on building a meaningful life that contains illness as opposed to a life of frustration and fear. Designed for patients in at all stages of the chronic illness journey, this book will also be illuminating for caregivers and loved ones.
Book description from Amazon: This book presents an overview of what it means to be a chronic complex patient, examining the wide range of physiological and psychological implications associated with EDSIII and other conditions such as endometriosis and fibromyalgia. It explores the exercise and rehabilitation work involved in managing the condition effectively, considering a diverse range of medical treatments and complementary approaches including physiotherapy, Bowen Technique and Feldenkrais Method(R). There are contributions and insights throughout from experts in the fields of physiotherapy, rheumatology and health psychology, all of whom have extensive experience of working with complex chronic patients.
Book description from Amazon: A must for anybody who suffers, or suspects they might be suffering from, Ehlers-Danlos Syndrome (Hypermobility Type) and provides everything needed to enjoy a fulfilling life with this complex condition. It will also be of interest to their families and friends, and professionals working with Hypermobility Type EDS.
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.