Fight like Mike Tyson

I think getting an EDS diagnosis - or any chronic diagnosis comes with a solid pair of balls attached. It has to or it will eat you alive. You have to fight for everything - insurance coverage, medication, diagnosis, and apparently the ability to qualify for graduation! Thank you God Almighty that I have some good advisers that worked with me at my school. I'm nearing the end of my time spent in classes and nearing my internship. Currently the qualifications for getting a Recreation degree with a TR concentration require a 40 hour per week internship. They are aware of only one exception ever being made and it wasn't for a TR student or for disability reasons. I spent the past week or so figuring out if I spent all of this time and money to not be able to get my degree. They decided to make an exception to the rule so that I can go 20 hour weeks but over double the time span. I also had to call the testing company to figure out if I would even qualify for the certification afterwords. I suppose this is a victory but I feel as though it shouldn't have to be. I shouldn't have to fight tooth and bone for every small thing in life. It amazes me how little the world knows. Obviously they can't be informed on every disability out there but at least be accommodating to an extent. Show some love or compassion instead of being intimidated or stern.

If you want to help in this fight for EDS-ers in the US, sign the petition to help it become a Nationally recognized disability...

https://petitions.whitehouse.gov/petition/recognize-ehlers-danlos-syndrome-create-awareness-have-eds-recognized-disability/FFWRj66T

Stay blessed.

Cartoons with EDS

* Merry Christmas! *

I haven't had much time to write as I've been spending time with my family and fairly exhausted with any "free time" I manage to accumulate. However, I do try to get out a new post every week so this week I'm just making it a short fun one. 

These are my TOP 5 Cartoons that likely have EDS...
If you have a favorite as well, leave it in the comment section :)

#5 - Shaggy

#4 - Goofy

#3 - Gumby

#2 - Stretch Armstrong

And drum roll please

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#1 - Sally (The Nightmare Before Christmas)

Saving a Kitten is a major PAIN

I promise this is EDS related, it just starts with a cute story. ;) So, the other day I decided to be super-woman and save a kitten. If you have ever seen a kitten not all cute and sleeping you know they are quite fiesty. Well, this also means saving their little butts can be quite an interesting ordeal. There was a tiny kitten hopping from car to car engine to try to stay warm. It was getting dark and chances of it surviving the night, or another car engine weren't very good. So I went to snatch it from under the hood of this random guy's car before it could run away. The kitten apparently didn't take this as a friendly gesture and 18 tooth holes later, The kitten is safe and I have to get rabies shots. For the average person they are quite painful. When you are already considered to have chronic pain, this means you shouldn't plan on even having a fan blow on your skin without feeling like your skin is going to explode. I haven't felt this sore since the last time I had surgery... before the pain meds. However, I called my doctor and picked some medicine to help with that. Moral of the story? Avoid wild animals even if they are terribly cute... but carry leather gloves in case you have to save one ;)

Coping and How to Stay Awesome

I'm assuming that the process of finding out you have a disability is similar for everyone. For me, at first I was relieved that it wasn't all in my head. Everything made sense. I wasn't just cursed with clumsiness or illness. There was a genetic REASON for it. After that initial "aha" moment, comes the life style changes to makes sure you don't end up worsening your condition. That leads to sadness and anger. For a while I had a punching bag I would punch when I was really frustrated but my arms would fall out. *sigh* Should have seen that one coming. I was grieving the loss of the old me. So I decided to ask a counselor for some coping tips and ideas on how to still enjoy my life. There's no shame in counseling. I promise. I'm open about it so other people don't feel like they have to hide it.
Anywho. I started making a list of qualities I still have that make me awesome. ;) It makes you realize you're so much more than a disability. Another list I made was of things I CAN do. So what if I can't rock climb or even bowl... I'm still able to draw/paint, walk through the woods (aka mellow hiking), go fishing, and play an awesome game of Apples-to-Apples! If you don't know how to do some of these, I didn't always know either. I picked up fishing this year and am studying art on my free time. Picking up new hobbies is well worth it and makes you a more well rounded person in the long run.
Another problem I ran into is with friends. With EDS, it's so difficult to be a reliable person. You really can't plan ahead since you don't know if you will feel like sunshine or like a bus hit you going full speed down the high way. That means you are now the spontaneous friend! If you are feeling awesome, text everyone to see if they want to go out for the night. If you are sore, invite them over for a movie. No reason you have to go out while sore or give up a good night with friends. Show them your awesome new hobbies or old ones with adaptations. Throw paint at a canvas. Walk pets at the shelter. Bake brownies. :)
One last final note. Most everyone has heard the phrase "fake it 'till you make it". Well, do it. Even if you are feeling like you're falling apart make yourself feel 100%. Confidence goes a long way.
Stay blessed!

On Having Children...

Most women spend their entire lives thinking they will have a glorious moment of holding a baby that shares their features that they have spent months bonding with while it develops inside of them. However, to someone with HEDS, this sounds about as appealing as running through a wood chipper. This does not make me any less of a woman or any worse of a future mother. When you spend your entire life trying to balance pain meds, physical therapy, and sleep just to maintain as "normal" of a life as you can, the idea of having a fetus throw off that balancing act is a torturous thought. EDS-ers heal slower than the average person and have a high risk of injury over all. Personally, my hips are so unstable that I already own an SI belt - which is typically given to pregnant women to pull their hips closer together to alleviate hip and lower back pain. So far all of this has been about me. There's about a 50% chance that a person with EDS will pass it on to the child. They will have the same type of EDS but how bad the type of EDS could be worse than that of the mother. Also, the long term effects of the medications I've been on could harm the child. I've been worried about that since long before my friends starting having children. There are always studies coming out about medications that have long been removed from the market that caused birth defects in children. This does not mean that people with HEDS can not have children. In fact, I know people who have successfully had and raised beautiful children. This is the choice of the individual after careful consideration and prayer.
I personally have always had a love for adoption and this just gives me one more reason to seriously take it into consideration.

EDNF has a lovely power point from a conference about it in more detail. If you are interested, Click Here.

Coming Out of the EDS Closet!

Like my awesome awareness shirt? I was so nervous in this picture. While taking an exam I noticed that one of the questions was matching EDS to it's definition. I contacted my teacher and said that in the future if she wanted me to speak with a class I would be more than happy too. Well, she jumped right on that offer and had me speak to my class this semester.  People couldn't figure out why I was so nervous. I tried to explain to them that it's really difficult to open up about my struggles and what I want people to know. My lovely mama had this super awesome shirt rush ordered for me from a local T-shirt shop. I wanted to have something with a Zebra ribbon on it to lead into a discussion about Medical Zebras. I also took one of my fellow EDS-er's advice and talked about the spoon theory. I don't remember everything I said because I'm a nervous talker but it was pretty cool.
I remember my teacher - who, keep in mind is an adorable red headed old lady with a British accent - says something to the extent of  "so college must be hard for you because when everyone else is going out you're dead". Oh yes, did I mention she's mighty blunt? :) Well, the whole class looked at her with an "I can't believe you just said that look" but ya know, that's a pretty close description of how it is. I wake up in the morning, slowly, do all that I need to for the day, do homework in the evening, take about 10 pills, then crash on my Tempurpedic bed surrounded by pillows that support various parts of my body. On a great day, I'll take a hot bath somewhere in there. There are a few times I can recall doing "normal" college activities and paying for it the next day. Or even for the next few days. I'm such an old lady. :) My point of this whole ditty is that it was like coming out of the HEDS closet in a big way. A few friends knew about it, some family, and I put a post about it once on Facebook but these people see my daily. I wasn't sure how they would react or if they would treat me differently. So far, so good. :) Hopefully I can do more awesome awareness activities in the future.

By the way, if you like those awesome jeans they are Rock 'n' Republic. They look amazing, fit amazing, and are worth the price. I got them at Kohls. :)

The Eyes

Connective tissues are everywhere in your body - not just in your joints. I've had problems with my eyes since I was young but every time I would come  back with either 20/20 vision or slightly farsighted. However, no one could figure out what was wrong with my vision. Before I was diagnosed I found an eye doctor that said my eye muscles were weak and I needed to exercise them. It did help but it didn't explain the sudden onset of blurred vision in one eye, why my eyes wouldn't focus together, or why my eyes shake when I'm tired. I even ended up driving about two and a half hours away to find an answer.
Eventually I found a wonderful doctor that does eye physical therapy. He told me that he could help with my vision problems but since there are connective tissues in the eyes that some of my problems were just EDS stuff that I will have to live with. He improved my vision through exercises so I didn't have to wear glasses to read and gave me exercises to keep in my PT book for when I have issues. He even informed me that people with EDS are prone to having dry eyes so getting an over-the-counter bottle of artificial tears would be beneficial. He also told me to get on a medicine to help with the muscle pain and get one for when I get optical migraines. Since then my eyes still spasm when I get really tired but when I have sudden pain and blurriness in one eye I just pop a nifty little pill and it takes it away. It also makes me sleep but heck, who doesn't need more sleep.

Handicap Passes and Ignorant People

I don't know about you but I have days when I can barely get out of bed. I know so many people with EDS that have these days and when they come, your plans go out the window. Well, I have a pain doctor that refills my "prescription" for one of these buggers every 6 months - it's the longest she's allowed to do or else I'd just have a permanent pass. Well, I appreciate the ability to use it more than I can express some days. However, not everyone understand that just because the little man on the pass is in a wheel chair doesn't mean I have to be in one to use the spot. One day, a while after I had hip surgery but still had problems walking, a "man" at school chased me down yelling in front of everyone walking by. After he caught up with me he asked why I parked in that spot. I explained that I was allowed to. He asked why. I explained that I had hip surgery and it was difficult to walk. I shouldn't HAVE to explain. I understand that him chasing me down was in good will but man, how rude. I was so taken back by this that for a while I was embarrassed to use the pass for fear that it would happen again. Well, a while later this lady almost backed into me in a parking lot but I just kept going and parked in  the handicap spot. As soon as I opened my door the person in the car that nearly hit me yells out something about her car then said "being fat isn't a disability". I wish I was kidding. The thing is, I'm not even fat. Don't get me wrong. I've got some nice curves but I'm not obese or anything. Nothing that would constitute that comment - as if there's any reason to say that. *rolls eyes*

But man, there are some mighty ignorant people in this world and we just need to inform them. So let me get to my point... I was dinking around a site the other day and found these nifty cards that explain EDS. How cool is that?! Any time someone asks about why you can't do something, and you really don't feel like explaining yourself for the 10th time that day, just hand them a card! To buy some of these is kind of pricey but I bet you all could come up with something on your computers that would work just as well.
Stay blessed everyone and keep spreading the word!

Recreational Therapists and Adaptive Activities

I'm going to school for Recreational Therapy which means a large portion of my job will be making adaptations to activities so people with disabilities can still enjoy life. Perfect job, ey? :) It's like I live my job on a daily basis. And honestly, you have to have a sense of humor about it because it can get silly! The other day my friends went bowling. I've had both shoulders repaired and after 3 swings my arm wouldn't stay in socket. *sigh* Well, the majority of my friend that I was with were also RT majors. We tried everything from sitting on the floor and pushing the ball with my feet to pushing it with another person to try to keep it from veering off to the lovely version of myself you see pictured. You have to quit caring about what others think and laugh a little. If there's a particular activity you really enjoy but are having a difficult time doing PLEASE don't give up on it with out first consulting a Recreational Therapist! Most hospitals will have one or know who you could talk to. They also might be called Activity Specialists or something along those lines. To prove my point, the video above is a girl bungee jumping with her wheel chair. This is through a camp in Canada that does adaptive extreme sports! How awesome is that? Take a look at their sight - Click Here! I'm assuming this isn't the only camp like this around the globe so no matter where you are, do a little research and don't let your disability take your life.

Wearable Awareness

I've wrote about serious topics lately so I figured I'd throw in a fun one. Here's some of my favorite awareness shirts. There are a lot of cheep or cheesy ones out there so I sifted through them to find the best of the best. Click on the link above each picture to be redirected to the website to order one of your own.


         A positive outlook

                                          

  A bit artsy

Bend and Snap - Witty ey?

        Zebras DO matter!                                                          

Hope is Important

                     

And for our supporters...

         Fighting for his girl                                                                                         

For all friends

Why can't your dog show support?

Friends with an HEDS-er?

When you tell someone you have HEDS, I've discovered that people turn into one of these...

The Grandma. 

This is when they give you the "awe poor baby" speech and the sad puppy eyes. *gag* I'm sure they mean well but I'm not a porcelain doll. Leave the worrying to me, I've been dealing with it for a  long time. 

The Avoider. 

If I get injured, it's not your fault. So please, do not feel the responsibility to keep me safe by not inviting me activities you assume I cannot do or will be too tired to do. EDS is a random disability so you never know how I'm feeling. And to top it off, I would like to assure you that I'm not contagious. 

Curious George.

 These people are my favorite. They genuinely want to be informed and encourage you to share your story. These people also tend to be the ones that may ask if doing an activity will be okay for you, but drop it after that.

MiniRant...

One thing people with HEDS struggle with is people not believing them when they ARE tired or injured. I can wake up feeling fine, make plans for that night, then feel like I've been hit by a bus by the evening. There are so many factors that can cause someone with HEDS to not be up for hanging out. Please please please don't get frustrated with that person. Brush it off and make other plans. Yes, it's annoying - but at least you can go make other plans. We are stuck at home in bed, on a couch, in a bath tub... trying to still find the joy in life realizing that you are now going out with out us. It's hard. And for the love of all that is good, DO NOT stop inviting us to things just because we are unreliable. I promise it bothers us much more than it bothers you. If it doesn't seem like it, it's because we have to deal with it on a regular basis. Keep inviting your friend with EDS even if they don't attend anything for an entire month. It's likely not personal.

What you think we do when we cancel...

What we really do...

Do this...
Something you CAN do for someone that keeps canceling is offer to come over to their place and do something like play board games or Mario Kart. Yes, Mario Kart. That way they can do what they have to with out leaving the house and still enjoy your company.

**If you have any personal experiences or bits of wisdom to add please leave comment.

The Intro

What is it?
Ehler Danlos Syndrome Type 3 - known as  Hyper-mobility Syndrome or HEDS -  is a connective tissue disorder that is pretty rare. Only about 1 in 10,000 to 15,000 individuals are diagnosed with this condition. That means only about 700,000 people out of the entire world population. People with this condition suffer from joint dislocations, subluxations, or tears, chronic pain, muscle spasms, fatigue, low blood pressure, an inability to control their body temperature, dizziness that can lead to passing out, easy bruising, a longer healing duration, "brain fog", headaches... and oh so much more. Since connective tissues are found throughout your entire body, symptoms can vary from person to person.

What are the visible symptoms? (and a sexy little pic to help elaborate)

• Can you place your hands flat on the floor with out bending your knees?
• Are your elbows hyper extended?
• What about your knees?
• Can you bend your thumbs forward to touch your arm?
• Can you bend your pinkies back past a 90 degree angle?

 ***I can not emphasize enough that you DO NOT have to have all of these symptoms to have HEDS.

For me, not all of my fingers are hyper mobile and not to the same extent on both hands. It all depends on how your tissues developed.

Currently there is no cure. :( Sad day. However, there's many things you can do to help. I'll go more in-depth in another entry but as a general overview, strengthen the muscles that hold your joints in place, get massages and chiropractic work regularly, and avoid activities that will put strain on your joints. 

I will also be posting an entry on what to do if you know someone with HEDS or any other chronic disability so stay tuned.
Until next time.