Independence

As I come to the end of college and that time when I really start my adult life, the frustration of not being able to be completely independent is rolling in. I feel like I'm a 16 year old girl stomping my feet and telling everyone "I'm an adult! You can't tell me what to do with my life!" but then I still need someone to help me get groceries when my body won't cooperate. Today it hit pretty strong when I went back to the heart doctor to talk about my new POTS diagnosis and I got upped to the highest level of the medicine I'm on. Oh, and did I mention I'm hooked up to a heart monitor for a good month? The battery of tests never ends. I get the heart monitor off just in time to have jaw surgery. *sigh. Anyone who thinks this disorder "isn't that bad" needs a reality check. I'm thankful for all of the things I CAN do but man oh man does EDS take a toll on your body and mind. The only thing it can't touch is your soul. Stay strong my EDS-ers.
I'll post two this week to give you something you can actually share with others or that will help you in form.

Stay bless ya'll.

Self Defense

The majority of my posts have been light hearted but I need to post something more serious this time around. Yesterday, something really horrible happened in my small town that made national news - if you want to read about it I will post a link on the bottom. I don't want to go into detail about the story but rather focus on the fact that the victim was able to escape a moving car and run to safety. I started thinking about how vulerable all of us EDS-ers would be in such a situation. There's a good chance that we would have ended up falling apart just from jumping from a moving car... but then having the stamina and flat out ability to run to safety? This got me thinking, what should a person with EDS do to protect themselves from a situation like this. I considered taking self defense classes but with my body, I'd probably end up injured just from the classes. They do, however, offer disabled self defense classes (you would have to look around your area) and there are quite a few YouTube videos on this subject as well. Take precaution not to injure yourself in the process though. ;)
Personally, I carry a bright pink can of pepper spray on my key chain but that wouldn't do me any good in a situation much worse than a creep getting too handsy. I don't feel totally comfortable carrying a gun but I know some people are considering it after this occasion. I was thinking about a cute pink taser. However, this lipstick stun gun looks nifty too. They also make some pretty cool self defense key chains.  But of course the best defense is praying that you never need to use any of these products. ;)

What do you all think would be the best route? Do any of you EDS-ers take any precautions?



Link to the crazy story -
http://www.themorningsun.com/article/20130118/NEWS01/130119721/suspect-in-cmu-kidnapping-killed-by-police

Food... Sort of...

Some people forget that the jaw is a joint, and in turn, can have the same difficulties as any other joint to a person with EDS. Personally, I have TMJ, a small overbite, and stretched ligaments in the joint itself. The big blow came when I got into a car accident a few years back and clenched my jaw. It popped the bugger right out on both sides.
So now, with 41 days until my jaw surgery, I figured I should start shrinking my stomach and start finding recipes that taste somewhat like a real meal. Soup is always a good place to start. I found some ones that are mainly broth and a couple that wouldn't be terrible blended. Applesauce is pretty much pre-chewed (*gross thought, I know) so that will do. I got a few nutritional drinks to try and so far the Vanilla Ensure is my top contender. In a packet of recipes sent with my pre-surgical information, I found a recipe where you blend peaches, juice, cinnamon  and nutmeg to make it taste like peach cobbler. Worth a shot, right? The thing I'm not looking forward to is the meat-based baby food. It said to mix bullion with it to thin it out and make it - well - bearable but I'm still a skeptic and working up the gusto to try it. So far I have the suggestion of cream of wheat and protein smoothies... any more ideas? Leave suggestions in the comment section below! Anything - no matter how crazy - is welcome! I'll be writing reviews and surgery updates for you all to follow. I had a hard time finding recipes so I'm going to try to compile as many as possible on here.
As always, stay blessed!  
(*Side note: I can't have dairy, but feel but free to post recipes or ideas for those who can though just as a resource!)

Friends, Family, and Foes... Trimming the Fat

Sometimes you have to let people go. It could be your best friend or your cousin you've known since birth... if they aren't supporting you, they don't deserve your companionship. We struggle and fight every single day of our lives for understanding and the people who are closest to us need to be the ones that hold us together when we start to fall apart. They are the ones that offer to help pay for your wheel chair when you can't afford one... not the one who puts you down for needing one. Out of all the pain that we go through on a daily basis, the pain of having a friend or family member not believe or support you trumps it all. If you are reading this as someone who knows an EDS-er or any Zebra, do not roll your eyes or ask us why we aren't doing one thing or another. We don't choose to live this way. If you find our condition as a nuisance, try living with it. I guarantee you that it's more of a nuisance to us. If you are reading this as an EDS-er, talk to the person in your life causing you anxiety first, but don't be afraid to cut off necessary ties. The last thing you need is someone making you feel guilty when you are doing all you can to survive every day.


Here's a happy little video about part tricks to counteract my depressing post...

1000+

I have over 1000 views! What a great way to start out 2013! I've only had this blog for a short period of time to raise awareness and provide some tools and personal experiences for EDS-ers and non EDS-ers alike. I couldn't do it with out you all. Thanks again. Praise be to God.
-Stay blessed.

Gifts for EDS-ers

Okay, so Christmas just passed us (and this post might have been more relevent about a month ago) but it made me start thinking of the people who shop for EDS-ers. This might seem easy until you have to actually shop for one.

Good Ideas!

• Braces - If you are close with an EDS-er, ask the person if they currently need any braces. People with EDS often have support braces for nearly every part of their body but they can run up a hefty bill. It might come as a surprise but this might be an EDS-ers favorite gift of the season.
• A Donation - There currently isn't much known about our condition so making a donation to EDNF (the Ehlers-Danlos National Foundation) would not only benefit us in the long run but would also benefit our friends and family.
• Pampering Items - Basically anything you might find at Bath and Body Works would be practical and boost our spirits. Body soaps, bath salts, or bath bubbles will be nice on days when we just ache all over and basically spend the day in a hot bath. Lotions are good when need to rub out our muscles or have the winter dry skin. And let's be real, what girl doesn't like a little smell-good.
• A really soft blanket - When you're sore, having a really soft blanket to wrap up in is like having a big ol' hug from your best friend. 
• Gift cards to do something fun! -  Yes, we aren't always the most reliable friends but we do enjoy the time we get to spend with you! Slip a gift card into a card and write something like "hey! I'd love for you to be my date to (insert movie title) some time this week!" That way they can still enjoy friend time but with a bit more flexibility in the schedule.

Bad Ideas :(

• A Massage - This might seem like a wonderful idea but many of us already go to therapeutic massages on a regular basis - if we can tolerate them at all. I have heard people that swear by them and people that were made worse by them. I would steer clear of them as a gift just in case.
• Video games, knitting tools... - Everyone with EDS is different so some of us can do activities with fine motor movement of the hands. However, some of us can't. If you notice that the person you are buying for has pain with things like writing or typing, try to avoid things that require repetitive small movement of the fingers.
• Tickets to a specific event - As I've previously mentioned, EDS is a very unpredictable condition. I could be chipper and walking up a flight of stairs one hour and be on the couch exhausted with a dislocated hip the next. That makes making plans for a specific date and time difficult and frustrating. There's nothing more infuriating to me than when I know I should be having the time of my life but either can't enjoy it or had to skip it altogether. 
  
  
  *If you would like to add to this list please leave a comment :)