Making A Living With Ehlers Danlos Syndrome The Best Way I Can Right Now, Well, I'm Trying Anyway

Having a chronic syndrome that causes 24/7 pain not to mention all the other not so lovely things that EDS offers causes having a job to support yourself is very very difficult. I think all the time what I could do for an income but it all boils down to working in an office or a place where my wheelchair would be easy to use and at a place where I would need to be dependable to show up during certain hours. That's just not possible for me. I've taken my desire to provide for myself and came up with some ways to make some money. I've not made any money on any ideas, and there are plenty of them, as of yet but I believe the main reason is because you have to let the public know that you have things to sell. Selling on line is not the same as having a store on main street where people see it when they drive by. It's tough not being able to have a job but I am trying! 

That's what I want to encourage you with, the trying part. I've had to think way out side of the box for me and through the palpitations, the shortness of breath, the dizziness and brain fog and the pain.... ya'll know..... it's been hard. Rarely do I have the energy to post once I get a product finished but here I am today..... almost having enough energy to concentrate enough not to get frustrated enough that I throw my hands up. If I can do this, even if it's very sporadic, you can do it to!

Ya'll I've been busy trying to find some ways to make a living! Finally I found something that I can do that I not only enjoy but I think anyone who purchases my projects will enjoy as well.
I've starting making and publishing coloring books and I've started getting some children's stories published that I've bee wanting to do for a long time.

I also have some EDS merch and Christmas merch that I'll be posting soon!



I've published a children's EDS book several years ago. 

https://amzn.to/3VZzo2e

Also on Kindle as an eBook. You can find that here.
https://amzn.to/3Sleydo

I thought it was time to get some other things published.

So, if you like to color or you know someone who does, take a look at my coloring books I have on Amazon. All you need to do is either click on the link below or go to Amazon.com and just type in my name,  Amy Hosp, into the search line and you'll find my books! 

I have a promise from God from years ago that if I would just keep writing that writing would fund missions work for me and that I would never need to raise money for missions work. That missions work looks different for me now than it did years ago, but non-the-less I'm still called to go out and teach the Gospel, so here I go stepping out in faith because even though I have been faithful to write, I've not always been faithful to get to the publishing part but it is now easier than ever to do so. Here's to publishing! 

This book is a Thanksgiving themed book with a story about the first Thanksgiving that was published back in 1905. There are illustrations for everyone in the family to color.
I hope you enjoy my new project! There's plenty more to come. It's a learning process so if you might find a book or two that is out of print, ignore those they are now updated with a similar book but the old unpublished book stays listed. 

I hope you'll find something there for a Christmas gift for someone you love, or hate, I don't care... just if you are buying a coloring book for someone but it from me.   

https://amzn.to/3XOz1sg

 https://amzn.to/3ILiW2k

And for the younger crowd here is a fun story I wrote. I think your toddlers will enjoy this one!

 https://amzn.to/3Z924Yn

Also on Kindle eBook @  https://amzn.to/3YOANux

Same Blog With a New Look!

Hi Ya'll! It's still me with my same ole self but I decided that my ole blog needed some freshening up so, here it is. I hope you find it a little more upbeat with the new colors and the crazy pic of myself in the background. 

I'll still be posting about gadagets and gizmos that help me with my everyday life and how to make things easier and helpful ways to help myself. I'm an Amazon Associate which means if you click on the links in the blog and happen to purchase an item then I will get a tiny commision for that. It's a great way to help support me so I can continue to do research for the EDS communitiy and all the other commuities of all the other disorders that we EDS people tend to have. 

I will be traveling soon in a van that I hope to live in while traveling. As of now it’s broken down!  I'm a missionary and I have a call of God on my life to go and minister and teach the Good News of Jesus Christ to the nations and here on the home front as well. Living in a van is an experince that I have loved and I have done very well physically, mentally and emtionally while living in the van, other than the time I fell out of the van and broke both of my legs. Well, that's a story for another day, but for now I want to tell you that I love van life because most everything I need for the day is right within reach of me and my set up is different than most van lifers that I see but then again I am different than most people I know other than my EDS peeps. GO EDS PEEPS! 

I hope you take some time to click around on the links on the blog and see what all I'm up to. Photography is my passion and I love it and I take all of my photos from my car window, meaning I'm in the car when I'm taking the picutres. I'm sure this is what will get me on Good Morning America one day for being the crazy lady who makes a living taking photo from her car. Hey, we can all dream!

So, the links will take you to some of my other blogs and to my shops where I sell my photos and where I sell T-shits and greeting cards and tote bags and puzzles and all kinds of stuff with the photos on them that I take. Of course you will see me posting when I put new things in the shops because a girl has to make a living somehow.

Also I'll be posting about van life and how I deal with that having EDS and how I handle dr appointments and such. It should be interesting and I really hope to inspire you to get out and try something new and us your imagination to step outside of your box, even if it's just a few minutes every now and then, to explore what passions you have that you could still participate in or find a creative way to fullfill those dreams you've always had.

Have blessed dreams about your future and together we can encourage each other. 

I promise that I'm going to be posting on a more regular basis here from now one. That should be one or two posts ever few weeks about EDS and all the things I'm learning and researching. 

 

This is my van that I named Bean Dip. I love him 
soooo much even though he is old and scared up, 

hmmmm that's sounds like me, old and scared up.... lol 

This is this inside of Bean Dip when I first got him. Not too bad for an old guy. 

My friend hiding behind the arm rest of my seat. 

We were checking out the interrior lights. 

They work well!

That's Allie hanging out with Bean Dip while her 

Dad was busy taking out the seats  so I would have 

room to fix up the van the way I wanted it to be. 

So Bean Dip is old, like I said, and his carpet is well used, but this is the 

recliner that I got to use in the van. It's nice to be able to sleep in it like 

I do in the house and then I do all of my compture and editing 

work from my recliner so I feel like I'm at right at home. 

Of course I still have to put all the things in that I need for traveling..... 

more to come later. 

Having less work to do in the kitchen are such a blessing to me!

 Things that help me having less work to do in the kitchen are such a blessing to me. With the cooler weather starting to show up, well, I hope it's going to soon, I will be ready start eating warm soup! 

Not that I eat cold soup, but the cool weather calls for extra warmth and making soup, either from some wild thoughts of what sounds good for soup or just popping open a can to heat some soup up my main dilemma is what to eat the soup out of. 

I use paper plates and plastic wear all the time because living alone there is no one to do the dishes after a meal so for me I have to do what is best for me in order to keep tidy kitchen. Paper and plastic wins all the way around and now my new favorite item that I'm adding to my make it easy for me list are soup containers that don't need washing up.

I searched high and low looking for something besides a bowl or a cup to eat soup out of and sometimes I eat just beans and corn bread and I like this same idea for eating oatmeal and cereal with milk. I think I could even pour my flavored hot drinks in these and even have a lid to keep it warm until I'm ready to drink it. 

What am I using for all of this yumminess? These!!!!! 

 

 https://amzn.to/3xHyPAW

These have been a game changer for me! I'm so excited to share these with you. I pour whatever it is that I'm planning on eating out of it and stick it in the microwave to cook it up. It's a one container cook and eat situation which makes less work for me in the kitchen!!!! 

Please click on the link https://amzn.to/3xHyPAW to order these to try them out for yourself. I would love to hear what you think about them as well. 

Here's to happy warm soup weather coming!!!

Ehlers Danlos Syndrome And How PTSD And The 9/11 Anniversary Has Affected Me

 You know that having Ehlers Danlos Syndrome opens up plenty of opportunities for emotional mayhem on a daily basis. That is because of the organic depression that EDS offers and the histamine overloads that Mast Cell Activation Syndrome gifts us with if you have that, not to mention the offerings of Dysautonomia and POTS and all the other bodily disorders that EDSer's go through. Daily life for 'our kind' is tough for sure but as you know if you are reading this and you have EDS then it's common for our bodies to react in harsh ways and it never gets easier but instead it gets harder and harder with each episode of stress or anxiety or depression or even a sneezing fit, - typed with a dramatic flare and sarcasm implied. 😁 

{To learn more about the above mentioned disorders look in the archives}

The anniversary of 9/11 is one of the bigger events in my life that cause extra stress and sadness for me. I had moved to NYC the day before 9/11. Maybe I got there then because I have poor timing skills or maybe it was because that was exactly when God wanted me to be there. It was a hit the ground running experience that changed my life in many ways. 

I didn't know at that time that I had EDS much less had I even heard of EDS and I honestly thought that all of my health issues were due to me being overweight. I'm not even sure why that matters for the point of this post, but thinking about that today and knowing how stress causes all kinds of things to flare up in our EDS bodies I have to be keenly aware of what I take in on TV and social media during the day of and the days leading up to the 9/11 anniversary. 

I'm a missionary and going to NYC was a stopping point for a few months before going to Nigeria for who knew how long. Well, that was the plan anyway....then 9/11 happened and travel to Nigeria became impossible at that time so that trip was delayed for a few years. As my EDS has progressed I am not as able bodied to live in a 3rd world country but I can still reach people all over the world and really by having the internet I can reach more people than I could have ever met in person. 

Why am I explaining that in this post? 

I'm doing so because I want to share my experience about 9/11 and the stress and sadness that I experienced, not that it was more or less than what the rest of the world went through, but for our purpose of supporting each of us Zebra's together, and to help those who need peace in their lives or are extra sensitive to big events like this one to know that they are not alone when remember 9/11 and also to share the Good News of Jesus Christ that brings Hope to us! 

With that said, take a look at my video and if you are interested then follow the link to my other blog to read the rest of the story! 

https://www.thetriumphalentryamystheory.com/2022/09/an-american-looks-back-at-911-by-amy.html

The link to my other blog can be found on YouTube in the description under the video. 

 

Ehlers Danlos Syndrome Dislocation- How I keep from dislocating my joints so often!

I’m updating this post with one of my favorite tools to help me in my everyday activities. 

As it goes with Ehlers Danlos Syndrome there are lots of times that we experience dislocations and subluxations when people without EDS would never consider this happening. It's the same with POTS. When you have POTS and do the most normal thing you are always at risk of being dizzy and unable to function. This makes life difficult at times and it seems like we are never able to get things accomplished, or at least accomplished without injury to ourselves. Simple things like picking up things that are dropped on the floor or on the floor of the car can cause great damage to our EDS bodies.

One of the ways that I dislocate my joints the most is reaching for things that are out of my reach. My car is a place where this happens a lot. Of course, bending overreaching for things on the floor or near where I'm sitting also causes a dislocation or two and for sure a few subluxation of some ribs.  

Instead of spending my time talking with you about how to treat these injuries I want to share with you about how I can reach the things that are out of my reach without injuring myself as much.

My solution is my favorite new tool!

Y'ALL I use this all the time!!!! I sit and realize that I've left my remote on the couch or someone has moved it or it's on the floor. I use my Grabber Reacher and pick it up and it saves so my precious energy for me. 

I know this tool will help you too!  

2-Pack 32 Inch Extra Long Grabber Reacher with Rotating Jaw - Mobility Aid Reaching Assist Tool (Yellow)

 https://amzn.to/3UwHT5g

I love knowing that I have a tool that lets me get a few things done without injuring myself. I do have to be careful not to use my new tool for too long at a time because my hands cramp and ache, but overall, I'm so glad that I have found this and that I can share it with you.

So I used to have one that folded in half so it was smaller to store but it also broke very quickly. 

This one is solid and doesn't fold. The gripping part at the end twists so that you don't have to turn your arm and wrist around to reach things.  I was pleasantly surprised by the shorter of the two.  I decided to keep it in my car for all of the things that end up on the front passenger floor. I use this grabber to reach it without overstretching my fingers, wrists, shoulders, or my ribs and hips. I use the longer one in the house to pick up almost everything that is below my knee height. This has saved me the above problems plus the dizziness that I get when I'm bending over.  

I urge you to check this out because I know it will change how you are able to do things that often cause injury while you are reaching just that bit too far.  

I am not selling these but I am encouraging you to take a look at them. 

“As an Amazon Associate, I earn from qualifying purchases.”