Bad Days Part 2: The Joshua Drawer

Those who have bad mornings as I do know that it can be difficult to accomplish simple tasks such as feeding your child or changing their diaper and clothes. I have an excellent tip for this, if your child can handle it. i have been blessed with a very obedient child who is an excellent listener. If you have children who aren't as cooperative this tip may not work for you.

I have made "The Joshua Drawer" in my refrigerator. The bottom drawer of the fridge is full of easy, handy healthy foods that he is able to access himself. I have Danimals yogurt drinks, go-gurts, juice boxes and a variety of fresh fruits like apples, bananas and clementines. These are all things he can access himself and that are also easy for me to help him with.

This has become especially handy as I am dealing with morning sickness. We are expecting our second child and I have been having a rough time with morning sickness (Or rather all day sickness). As most of the foods in the Joshua Drawer are mild smelling that also works out well for my me.

The Bad Days

One of my most memorable doctors visits was the one when they said I should be doing as much on a bad day as I do on a good day. Bahahahaha!!! Upon realizing she was serious, I relaxed my face and calmly said, "Do you suffer from a chronic pain disease?" She explained that she understood what I was thinking and feeling, but that I must do it.

Easier said than done. Some days are so bad you can't leave your bed. And I think to myself, "I have to get out of bed, just like I do on good days." And when I attempt to do that, placing one foot after the other on the floor, listening to all my joints in my foot and ankle reconfigure and return to their respective places, I think, "Whoever said you have to do the same thing on bad days as good days has never experienced this." So back in bed I go and into bed comes the toddler, UNO cards in hand--he knows the drill.

If mommy is in bed, it's bed games day. One of my son's favorite bed games is UNO. However, he is two and doesn't quite understand the rules. So we match the colors or the numbers. This keeps him occupied for at least 45 minutes and you are still spending time with your child even though you are suffering. Another plus is it is fun for both players and your child will likely not even pick up on the fact that you are suffering. He loves the game. This will give you enough time to recover from the pain of all your joints replacing themselves.

Losing My Marbles

If you are as fortunate is I am, you will be able to do this next activity with your two year old. My boy doesn't ever put anything in his mouth, so we are pretty well covered on this. If you are not as fortunate, cotton balls will do.

I often dislocate this one joint in the bridge of my left foot and sometimes it will stay that way for days! I also dislocate my big toe and the toe next to it. I am often limited to household tasks and regular every day things I need to do to care for my son. It's enough to make you feel like you are losing your mind. So I do my feet joint and muscle strengthening exercises and I do them with my two year old!

The game. Put 10 marbles on the floor for you and 10 for your child. Put a bowl next to the marbles. You have to pick up the marbles with your toes and transfer them to the bowl. Whoever gets them all in first wins! this strengthens the tissues around your toe joints and works all of the little muscles in your foot. And my kid thinks it's hilarious and could do it for almost 15-20 minutes. That's a lot of time in Toddler time!

This exercise can also be effectively done with a towel if you are not trying to entertain children.

What is Ehlers-Danlos Syndrome

First of all, what is EDS? Wikipedia has an excellent page about it, but I'll put it simply. It is a joint and tissue connectivity disorder. It is also a chronic pain disorder. It affects joints, muscles, tissue and even the organs of the body. Some symptoms and characteristics are extreme flexibility, loose joints that often dislocate, easy bruising, velvety and stretchy skin as well as early onset osteo-arthritis as well as other symptoms.

My personal EDS. I have EDS type 3. EDS is hereditary. As the EDS gene is passed from one generation to the next only 50% of the genes pass to the child and the other 50% mutate. This means no ones case is the same making it extremely difficult to study. As a result, there is no treatment and no cure. Depending on the genes mutation the threat of EDS can range from mild to life threatening. I was diagnosed with type 3, the most mild, after one physical examination. However, a second exam called for reevaluation of a more severe form. I have not yet done that test as it is an excruciating bone marrow biopsy. I said, "If I have it, i have it! Taking a test won't change it! And there's no cure so. . . I think I'll have a happier life if i don't experience the bone marrow biopsy."

So, back to my personal EDS. I have early onset osteo-arthritis in my hips and lower back, I have extreme flexibility and am at risk for Mitral Valve Prolapse. When I had my physical exam done my Rheumatologist bent my fingers backward to almost a 90 degree angle and said, "Yep, you have EDS alright." I said, "They can go back a lot further than that!" (My fingers can rest backward on the back of my wrist). And she said, "You only have to be able to pull them back this far (90 degrees) to be for considered EDS." I have the stretchy skin which is a plus believe it or not--no stretch marks after gaining 55 lbs in my first pregnancy. Woo hoo!!

Everyone is different. My mother has EDS 3 as well, but our aches and pains are totally different. For example, she doesn't dislocate her joints often, but I consider it a good day if I can keep my dislocations below 5!

All of this with a two year old. I have a very busy two year old boy who gave up naps recently. he is always on the go! How do I run after a two year old when I have osteoarthritis? I don't know. Lots of blessings I guess. But, I do it day in and day out. And I hope to share some of my tips and ideas with you and ensure a happy motherhood. These ideas will also help your child have a happy childhood even though you can't army crawl with them on the floor because you might get stuck, even though you can't swing them around in circles by their arms because your own arms might dislocate.

So join me as I record my experience of motherhood with EDS. Together we'll do the best we can. Let's put our ideas together and ensure a happy life for all amidst the constant pain. Let's work together!

Welcome

First Post! I am new to the blogging world. I am a mom with Ehlers-Danlos Syndrome and wanted to get myself out there to give and receive advice on parenting with Ehlers-Danlos Syndrome. I hope this blog will be of some help to mom's suffering from EDS or other general issued that come with parenting, i.e. depression, anxiety, etc. . .

I am not technologically savvy, so please feel free to give me any advice as far as all that goes if my blog starts to look a little off.

I have decided to do this blog just today and I am out of town so I do not have all of my camera equipment and all that good stuff. So, I will have pictures up on September 15.