Saturday, December 14, 2019

How I keep from dislocating my joints so often!

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 subluxted 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!


https://amzn.to/2YQ5ily


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.”




Tuesday, December 10, 2019

Holiday Stuff Is Here!

Hi and Happy Holidays to you all!

It's a good day to have some fun even if you don't feel like getting out and doing much you can at least look good staying home. Here's how!

Whether you celebrate Christmas or Hanukkah or something else during this time of year, it's a great time to buy a gift for others or branch out and treat yourself.
I have lots of fun products in my store. You can go check them out at
https://teespring.com/stores/wear-it-out-loud-amys-theory Be sure to look around the site for all the colors and products that are available. 

and at https://amy-hosp.pixels.com/ to find Christmas cards.

Here are the Holiday items I have:

At my store https://amy-hosp.pixels.com/ there are lots and lots of things to choose from. Take your time to scroll through the collection of things!
We have Prints of Photos, Greeting Cards, Tee-shirts, Coffee Mugs, Notebooks, Tapestry, Bath Towels, Round Beach Towel, Shower curtains, Phone Covers, Portable phone charger, Tote Bags, Carry-All Pouch, Weekender Bag, Duvet Cover, Throw Pillow, Fleece Blanket, and more!






Buy 1 card or a pack of 10 or 25 cards.
Description
Our greeting cards are 5x7 in size and produced on digital offset printers using 100 lb. paper stock.
Each card is coated with a UV protectant on the outside surface which produces a semi-gloss finish.
The inside of each card has a matte white finish and can be customized with your own message up to 500 characters in length.
Each card comes with a white envelope for mailing or
gift-giving.
The cards ship within 1-2 business days.
Any photos on my site can be turned into a greeting card so have a look around while you are there!
Merry Christmas to all and to all a good night!















In my TeeSpring store: https://teespring.com/stores/wear-it-out-loud-amys-theory
we have: T-shirts, Hoodies, Tanks, Pocket Tees, Baby Onesies, Leggings, Canvas Prints, Pillows, Posters, Tapestries, Phone Cases, Beach Towels, Flags, Tote Bags, Mugs, Stickers


Randolph is the Texas Rudolph
from Wear It Out Loud Amy's Theory



Randolph the bow-legged cowboy is the Texas version of Rudolph. He's a legend that you need to know about and spread around. You'll be a legend when you wear this shirt!

If you don't know this song then here are the words. Sing it to the tune of Rudolph The Red Nose Reindeer.

Randolph, the bow-legged cowboy
Had a very shiny gun
And if you ever saw it
You would drop your pants and run
All of the other cowboys
Used to laugh and call him names
They never let poor Randolph
Join in any cowboy games
Then one foggy Saturday night,
The Sheriff came to say:
"Randolph, with your gun so bright,
Won't you shoot my wife tonight?"
Then how the cowboys loved him
As they shouted out with glee:
"Randolph, the bow-legged cowboy,
You'll go down in history!"


Here are just a few of the selections: Go to https://teespring.com/randolph-is-the-texas-rudolph to see all of the items.















Check out these products with Santa's picture of them.

Santa Brings a Bible
from Wear It Out Loud Amy's Theory

This is my Dad, one of Santa's best helpers! My Dad helped Santa out as the Town Santa in Frisco TX for more than 45 years. It was one of his favorite jobs ever!
https://teespring.com/santa-sees
















Hanukkah Lama
from Wear It Out Loud Amy's Theory
Hanukkah is a wonderful time of year also known as the Festival of Lights. This Hanukkah Lama is wishing you his best during this Hanukkah Holiday season.

https://teespring.com/hanukkah-lama

































Wednesday, October 23, 2019

Get your FREE e-book, Ehlers Danlos Syndrome With Liberty The Dog, with your Kindle App!


 Get your FREE e-book, Ehlers Danlos Syndrome With Liberty The Dog, with your Kindle App!



Liberty The Dog and I are so excited to let you know that for the next 5 days (Oct 23-27 2019) you can go to https://www.amazon.com/dp/1723438138 and download our book, Ehlers Danlos Syndrome with Liberty the dog, FOR FREE!  

You can get your FREE e-book copy with your Kindle App. Hurry before the 5 days pass.
This book is a quick read with lots of cute pictures of Liberty, she made me tell you that. We would love for you to read through the book and leave us a review of what you think about it.
FREE Y’ALL! Who doesn’t want something for free?
What is this book, Ehlers Danlos Syndrome With Liberty The Dog all about?
Ehlers Danlos Syndrome with Liberty the Dog is a book Written by Amy Dee Hosp where the dog who has the same genetic disorder called Ehlers Danlos Syndrome as her owner does, tells her story.
Liberty explains:
The book Ehlers Danlos Syndrome with Liberty the Dog is a book for children. There is just a hand full of children’s EDS books on the market and this one is at the top of the list. If you know a kid with EDS this is the perfect gift for them. If you know an EDS kid or you’re an adult with EDS this book will help you as well.


We are extremely excited about this and can't wait to help kids.















For a quick look inside Liberty’s book go to YouTube at                                                


You can get a paperback and e-book copy of Ehlers Danlos With Liberty the Dog at


or You can buy your paperback copy anywhere books are sold online.
  
 




















Author Info:
Amy Hosp grew up in Frisco TX and she is a graduate of Dallas Christian College where she earned a B.S. in Ministry & Leadership and has spent some time working toward earning a master’s degree at Southwestern Baptist Theological Seminary in Ft. Worth TX. In 2005 Amy served as a missionary in Nigeria. 
In 2012 Amy was diagnosed with a rare genetic disorder called Ehlers Danlos Syndrome Classical Type I and in 2018 another rare genetic disorder called Osteogenesis Imperfecta Type I. This extremely rare combination of genetic disorders causes a host of health issues that have left Amy disabled. Despite her disabilities, Amy enjoys random adventures ranging from a spur of the moment road trip to the country to exploring ideas of the unknown in life.  Her life is a voyage and she wants to invite you to go along with her and find in you, what she has and is still finding, "The person that God created me to be!"  
Amy is a writer, photographer, musician, and a missionary. She deals with life by always looking for the positive side of every situation and she will leave you with a smile. Her passion is to challenge the minds of others to look deep inside of themselves and look at life from a different perspective and to find the true giftings of God in their lives. Amy brings a unique view to understanding God’s fullness and happiness for today’s Christian believer.  

Find me at:
Blog about Ehlers Danlos Syndrome

To purchase Amy’s photography and products with Amy’s pictures follow this link

Here are a few of my fav’s.  We have Prints of Photos, Greeting Cards, Tee-shirts, Coffee Mugs, Notebooks, Tapestry, Bath Towels, Round Beach Towel, Shower curtains, Phone Covers, Portable phone charger, Tote Bags, Carry-All Pouch, Weekender Bag, Duvet Cover, Throw Pillow, Fleece Blanket, Yoga mat 






To get a paperback and e-book copy of Collection of Sketches For Reaching Out To the Hurting and Lost: Do You or Your Church Need An Attitude Check about How Others Are Being Treated? … Vignettes For Sermon or Discussion Starters follow this link




Amy’s Store at Teespring – shop for lots of great Tee-shirts and other products designed by Amy.

Here are some examples: There are lots of sizes and styles and colors also we have mugs and totes as well. 












Amy’s Facebook

Amy’s YouTube Channel

Find Liberty at:

Liberty the Dog’s Facebook

Liberty’s Instagram

Amy and Liberty’s Blogs that have A Little Bit of This And A Little Bit of that

 Liberty’s YouTube Channel


Thursday, February 28, 2019

Today is Rare Disease Day

The Last day of Feb is Rare Disease Day

I know that I have posted about some of my medical issues before but today is the day that I am choosing to tell you about some very rare things that I deal with. I’m not asking for sympathy, I’m asking you to take a look and educate yourself about some of the things that you may never have heard of. I'm asking that you take a look at these so that others might not have to suffer from the emotional pain that comes with these disorders. I’m also asking you to take a look so that you might be able to better understand me and why I am sick all of the time. I don’t see these things as unfair and I don’t feel jilted by life, but I do feel misunderstood and taken advantage of and blamed at times for my conditions. If you have known me since childhood or young adulthood, then you know that I have been overweight my entire life. If I was going to be skinny by now, I would have been so it’s just not going to happen for me. I can lose small amounts of weight at times, but no matter how hard I try it is just not physically, or at this point medically possible for me to lose weight because of a condition that I was born with. So, to start with my list of rare conditions let me start with what I think is a blessing as far as my self-esteem goes. I didn’t know until just a few years ago that my weight was a problem that I can’t do much about and that I was born with the problem because of EDS. If I would have known this information when I was a child I believe I would have confidence to go out in public without worrying what others are thinking of me because of my weight. When I do remember that this weight isn’t all my fault, then I can remind myself that I’m not all of the ugly things that were said to me that caused me to believe that I’m a bad person because I grew up being overweight. Speaking of rare things, It is a rare day that I can remember that all the names that I’ve been called and all the lectures that I’ve been given in life and all the doctors who have told me that I’m just lazy concerning me being overweight is not what I am. I feel this way because I’ve been belittled my whole life for it by all but maybe a very small handful of people who saw me rather than my weight and you know who you are and Thank you from the bottom of my heart.  It was and is cruel for this to still be going on in my life. It is bullying and still to this day is why I believe that friends and family don’t understand why I need so much help with the house and taking care of my mom and why I can’t just jump up and do the things that I used to do. There are reasons beyond what even I have seen until just the past few years. While I’m being honest, I don’t go to events where I will know people there that I could go to with my wheelchair because I know that people think that my weight is the problem as to why I can’t stand up for long or walk very far. Not attending church is a good example. Before I got my chair I wasn't able to attend because it was so tiring. I still get tired using my chair but it's not nearly as severe since my chair saves my energy a bit.
Having a rare disorder is life changing but having as many as I have the hardest part of being alive for me is because of my weight and how much I have to watch that I don’t get even larger and how much I fight depression and often suicidal thoughts because of how I have been treated by society because I’m overweight. If you struggle with your weight, then you know exactly what I mean by this.

Rare Conditions:

Each day I am dizzy, have a headache, body pain throughout, several joint dislocations or subluxations, muscle cramps and burning muscles, confusion, irritability, chronic fatigue, insomnia, and heart palpitations and I feel like I have the flu on the worst day of the flu and most of all discouragement just to name a few. I wake up with these feelings and it goes downhill from there. 

So, here is a list of some of the rare conditions I have and a brief explanation of them. 

Hypothalamic obesity is a rare disorder that I was born with because of EDS. It is caused by damage to the hypothalamic gland. This happened to me because I was born with a form of Intracranial hypertension -External Communicating Intracranial Pressure/Hydrocephalus. When this happens, the hypothalamic gland can be damaged and these patients gain weight even in response to caloric restriction and attempts at lifestyle modification are useless to prevent or treat the obesity. Therefore, I have dealt with being overweight and staying overweight my entire life. Although I have been and am overweight, weight has not been the cause of my physical problems. People that are very thin, middle-sized and heavy have the same problems who have EDS. Weight is not an issue in my disorders other than making them more difficult to deal with. Losing weight, if I could, would not fix or make any of my pain or disorders go away.

Elhers-Danlos Syndrome Classical type is a genetic connective tissue disorder that is caused by defects in a protein called collagen. Collagen is like the glue that holds your body together. We are made of 80% collagen so that means that it is in every single part of your body.  
EDS is different in each person and because there are so many symptoms that match other illnesses EDS is often left undiagnosed until patients are in their 30’s or 40’s.
There are about 13 different types of EDS and most people, for sure myself, have cross overs from one type to another or more.
There is no cure for EDS and there are no medicines for it other than an attempt at lessening the chronic pain. Patients with EDS have chronic pain 24/7.
There are times that I have to wear splints to keep from hurting so badly because of dislocation or subluxations, but the pain is always there. This is a progressive disorder and I already have to use a wheelchair at certain times and I’m very afraid that I’m going to be using it full time within the next year or so.

Osteogenesis Imperfecta Type 1 is a condition in which bones easily break due to an abnormality in the collagen required for bone strength. Osteogenesis imperfecta (OI) or Brittle Bone Disease is a complicated, variable and rare disorder. Its major feature is a fragile skeleton, but many other body systems are also affected.
People with OI experience frequent broken bones from infancy through puberty. The frequency typically decreases in the young adult years but may increase again later in life. Respiratory problems including asthma are often seen. Other medical characteristics and issues include:
 Bone deformity, and bone pain.
Short stature.
Spine curves.
Low Bone Density.
Loose joints, ligament laxity, and muscle weakness are common.
Distinctive features of the skull including late closing fontanels, and head circumference greater than average.
Hearing loss may begin in the early 20s and by middle age is present in more than 50% of people with OI.
Brittle teeth (called dentinogenesis imperfecta or DI) are seen in 50% of people who have OI
Respiratory problems including asthma; may be aggravated by chest wall deformity and/or spine deformity.
Vision problems including myopia and risk for retinal detachment
Skin hyperlaxity; easy bruising.
Cardiac issues.
Fatigue.
Skin, blood vessels, and internal organs may be fragile.

People with Type I OI, the type that I have, the mildest and most common form, may have only a handful of fractures or as many as several dozen fractures in a lifetime. They may have few obvious signs of the disorder. There usually is little or no bone deformity. Height is less affected than in other types of OI. People with Type I OI are often similar in height to other family members. Muscle weakness, joint laxity, and flat feet are common. Dislocations and sprains may occur as well as fractures. Life expectancy appears to be average.

Platypnea-orthodeoxia This is caused, for me, because of a hole that I have in my heart that I was born with. The hole opens and closes depending on the position my body is in. I have been told by my heart doctor that less than 30 people in the world have this disorder. I would call that pretty rate. The symptoms occur when the patient is upright, sitting up or standing, and go away quickly when the patient lays down. I will share more about this syndrome in another post.

Chari Malformation Type 0 - Chiari (pronounced key-AR-ee) malformation is a condition in which the lower part of the brain, called the cerebellum, herniates through the skull and down into the spinal canal. The herniated tissue compresses the brainstem and blocks the normal flow of cerebrospinal fluid (CSF). The blockage can then cause a buildup of fluid in the spinal cord (syringomyelia) or in the brain (hydrocephalus). Chiari is often misdiagnosed because of the wide variety of bony and soft tissue abnormalities that compress the cervical spinal cord, brainstem, or cranial nerves, resulting in a wide array of possible symptoms. Symptoms include headache, neck pain, dizziness, arm numbness or weakness, sleep problems, fatigue, etc. Headache in the back of the head that worsens with coughing, sneezing, or straining is a hallmark symptom.
Chiari type 0, a newly identified form of Chiari, describes the absence (or a “zero” herniation) of the tonsils below the foramen magnum. Yet Chiari 0 includes the presence of both symptoms and a syrinx in the spinal cord. This new type is under study and controversial.

Dysautonomia,  Dysautonomia refers to a disorder of autonomic nervous system (ANS) function that generally involves failure of the sympathetic or parasympathetic components of the ANS, but dysautonomia involving excessive or overactive ANS actions also can occur.
Primary dysautonomia is usually inherited or due to a degenerative disease, while secondary dysautonomias result from another condition or injury. The most common types are neurocardiogenic syncope, which leads to fainting.
Common symptoms include:
an inability to stay upright
dizziness, vertigo, and fainting
fast, slow, or irregular heartbeat
chest pain
low blood pressure
problems with the gastrointestinal system
nausea
disturbances in the visual field
weakness
breathing difficulties
mood swings
anxiety
fatigue and intolerance to exercise
migraines
tremors
disrupted sleep pattern
frequent urination
Temperature Regulation Problems
concentration and memory problems
poor appetite
overactive senses, especially when exposed to noise and light

These can occur in a range of combinations, making dysautonomia a difficult condition to diagnose.

 Mast Cell Activation Syndrome (MCAS) Mast cells are allergy cells responsible for immediate allergic reactions. They cause allergic symptoms by releasing products called “mediators” stored inside them or made by them. ... Sometimes mast cells become defective and release mediators because of abnormal internal signals. This is not the same as having hay fever or being allergic to grass. Anything at any time can cause an allergic reaction, even if it has never caused one for you before. Also, stress, pain, depression, and fatigue can cause a MCAS that takes days to weeks to clear up.
The symptoms most consistent with anaphylaxis are:
•    Heart-related symptoms: rapid pulse (tachycardia), low blood pressure (hypotension) and passing out (syncope).
•    Skin-related symptoms: itching (pruritus), hives (urticaria), swelling (angioedema) and skin turning red (flushing).
•    Lung related symptoms: wheezing, shortness of breath and harsh noise when breathing (stridor) that occurs with throat swelling.
•    Gastrointestinal tract symptoms: diarrhea, nausea with vomiting and crampy abdominal pain. 


I always say since I am a single gal, "Boy you would think that with all these rare conditions some guy would want a rare jewel like me but the problem is that I'm like an old rare rock."









Sunday, January 13, 2019

Ehlers Danlos and Mast Cell Activation Disorder are Connected With Depression.

Having a disorder that causes chronic pain can leave the patient feeling very depressed. There are plenty of reason why an adult would feel depressed because of this, but for a child, there are just as many reasons to be depressed because of chronic pain. As I child I was always overweight and slower because my body didn't work like everyone else. I was depressed throughout my childhood because of that and knowing that I didn't measure up with my peers in many different ways. Ehlers Danlos can cause so many problems in a body, after all, we are 80% collagen so that means that collagen is everywhere from head to toe, including in our brains. Depression can be caused by EDS just as having to deal with life with EDS can cause depression.

I want to use this post to educate about how Ehlers Danlos and Mast Cell Activation Disorder are connected with depression.

I believe in counseling and I think it is important to help one grow in maturity with emotions. I wouldn't talk anymore about my own depression here but I do want to express that I believe in counseling for more than just dealing with chronic pain and what living with EDS is like. Depression happens to people for all kinds of reasons and all kinds of things happen to people that are hoped no one will ever find out about and some of those happenings are very damaging to people, more so to kids when they are going through it. I encourage you to help the children in your life whom you think may need to find someone to talk to about whatever may be bothering them, and for you, I encourage you to seek someone to talk to if you have things that just keep tripping you up or something that you always get mad about but you don't know why. I think you get the point that I'm trying to make here about seeking help to learn to grow through any pain or trouble that you are dealing with or and also may not be dealing with so well.

For how depression is connected to EDS and Mast Cell Disorder please take time to view this informative video from Dr. Diana Driscroll from her website:

http://prettyill.com/videos/watch/depressed_irritable_bipolar
Just click on the link to watch the video and then take some time to look through all of the information Dr. Diana has on her website!

After watching this and talking to Dr. Diana about how this information fits me so well, it really has helped me learn what to do when these feelings jump up and grab me. I take an antihistamine for about two weeks and it helps me get these thoughts under control. Of course, I talk with my counselor to help me deal with the ups and downs of having a chronic illness just to make sure that I keep on track with what is good for me in the long run.
I know you will learn lots by watching the video.

This is another very helpful video where Dr. Diana discusses depression and suicide ideation due to issues related to EDS.