Wednesday, December 31, 2014

Happy New Year!

Ah, new years. Where people go out and drink and stay up to watch the ball drop and kiss their spouse to start the new year.

Goodbye old year! Here is a start to fresh new me!

Am I right?

People ask "What's your new years resolution?"

I get it. We can all use some improvement.

But really, I don't know what to do anymore. But I'm a little depressed today, so maybe my funk is just taking the fun out of it.

I mean, other than quitting smoking (yes I know I'm a horrible horrible person because I smoke. I KNOW!)  I don't really have much on my "list".

There are things I'd love to; workout regularly, organize and declutter out house, do more stuff with the kids, work more in my garden, etc.

But with a chronic illness, I never what I will feel at any given time.

For instance, earlier today, I had planned to do stuff around the house but my blood pressure dropped. Can't do anything when that happens. So I layed on the couch all day watching a marathon of Gilmore Girls.

It was all I could do. So when I don't know what will happen with my body at any moment, it makes "resolutions" harder to make.

I mean, sure I can make them. But sticking to them... Well, that's a whole other thing entirely.

How many have made new years resolutions anyway? Maybe we can all try and push each other to keep them (when we are able anyway).

Sometimes, I know I could. But I allow my disease to be an excuse to not to do because changing is hard and sometimes I'm just too damn tired to care.

My 2014 wasn't that bad, but it wasn't a perfect year either. We lost our dog, but when on a vacation. My kids are healthy and in school. I made the President's list in school. It was a pretty good year.

How about all of you? How was your year? What would you like to change for next year? (And it can't be a random cure for your illness unless you are actually a scientist and already researching and close to finding said cure). Something YOU can actually change for you and your life. Please share below!!

Have a great night! Be safe! And may you have a blessed new year!

I'll be sitting on my couch (actually I'll probably be sleeping) this new years. :) 

Sunday, December 28, 2014

I Need A Vacation

We just took our first vacation. Well, our first real family vacation. In the sense that we didn't travel to a family members house and stay with them. 

We went to Stone Mountain Ga and stayed in a hotel and everything. It was awesome.

The hotel was shitty, but it kept us warm and gave us a place to sleep and shower, so it worked. They also offered breakfast every morning. So that was good. Saved us money on that meal every day.

We went to Stone Mountain Park and got the 2 day pass to go through Snow Mountain, and the Stone Mountain Christmas park. We walked around A LOT!! And with a 3 and 5 year old. It was exhausting. 

We just got home at like 1 in the morning on Saturday and I'm still recovering.

Isn't that funny... You go on vacation and you need another one when you get back home.

Unpacking was worse than the packing was. And my body is soooooo sore from all the activities we did. We were going like non-stop. For 5 days straight! 

Having EDS and going on a 5 day trip packed filled with activities was probably not the smartest thing to do. Plus sitting in the car for as long as we did to get there and then back. I'm a frickin mess now.

My chiari is flaring up, my body is screaming at me. It will probably take me another week to get back to where I was before. 

But it was worth it. Some things are worth the pain and all the shit that come with having a chronic illness. And this was definitely one of them.

We all had a blast and my kids were soooo happy spending so much time us. My boyfriend works a lot normally, so we don't really get to spend much time with him. It was wonderful. 

Although I'm paying for it, and will be for awhile longer, I wouldn't take it back for a second.

But I wish I could take my own little vacation right now and get away from all of them so I can sleep for days. 

What things have you done that you had to pay for later? Was it worth it for you? What about a time it wasn't worth it after? Share your experience by commenting below!! :)

Friday, December 19, 2014

You're Such A Drama Queen


What was that? Your arm was severed off? Stop over reacting. You do have another one! Geez. 

So selfish for wanting two arms... I know people like that too... I mean, mostly because I'm one of them!

I hate that when I say anything to anyone that DOESN'T have EDS, they look at me like I'm such a drama queen and just over reacting. 

Me: "Ouch! My finger just dislocated! *Pop* Okay, back in." 
Someone else: "Ugh! Seriously?! You're finger did not just dislocate!" 

Right... Because all my doctors are wrong and you know all.... Sorry all-wise-one.

I just don't know what I need to do to be taken seriously! Even my doctors have totally dismissed me when I've told them. CORRECTION, SHOWED THEM!! things and they still just look at me like I'm crazy for complaining my joints fall out of place. 

Like I'm this insane person and shouldn't be complaining about such trivial things. As if I ran to the ED for a paper cut or something.

What is it?! Because I'm a young adult woman? Probably.. And I don't really know why. I mean... Kids get sick and everyone says, "Aw. Poor thing." Old people get sick and people feel bad because they are old.. But young-ish adults and middle aged people... Well.. We are just drug seeking attention whores. 

Why?! I'm pretty sure everyone gets sick! Why the hell is it so hard to be taken seriously?! 

I could see it now. I walk into the ED because my stomach explodes. They put my insides back in and put a bandaid (which I'm allergic to) over the gaping whole and send me home. But don't forget the $45,000 bill for the bandaid.

I am 25. Not a child anymore but not old enough to remember the segregation either. So I guess that means I can never be ill or have problems without being called a drama queen. 

Who makes up stuff like this?!! Why would I want to seek medical attention if there wasn't a problem?! 

Oh, I know.. There is a disease about that. I KNOW!! 

BUT!!! If they thought I was just crazy and attention seeking and had Munchausen's, then why aren't they trying to treat that?! Anyone else wonder this shit?! 

Anyone else just a drama queen, drug seeking, over reacting child? Share your stories below!! :)

Wednesday, December 17, 2014

I'm Angry With You...

I'm angry that you're broken.
That you're falling apart more each day.
That you need pills to survive.
That you don't work the way you should.

I'm angry that I can't control you.
Not the processes you can't perform.
Not the processes you can perform.
You are stupid and broken.

I'm angry that you won't get better.
That you can't get better.
That I can do nothing
But watch you break apart every day.

I'm angry that you're stubborn.
That you haven't just given up already.
I'm angry that I'm trapped in you.
That you keep pushing on when I just want to give up.

I'm angry that I can't away from you.
No matter how much I wish to
I'm stuck. And you smile.
I'm angry that you try so hard.

I'm tired and I want to be done.
And I'm angry that you won't give in.
Just when I think enough will finally be enough,
You come fighting full force.

I'm angry with you.
But mostly,
I'm scared for you.
Because in you, there is me.
And without you,
As broken as you are,
Where would I be?





Wednesday, December 10, 2014

I Am Gumby's Secret Love Child

That's right. Gumby has a secret love child and it's me! I'm exposing Gumby and his dirty sexual escapades! 

Really though, I may as well have been. With Ehlers Danlos comes my extreme flexibility. To the point I don't even know what's considered normal. AND when I wear braces to keep from hyper--extending my joints, I really don't understand how people live with such low range of motion. 

I mean. I guess it's normal range of motion but mine is normally soooooooooooo much more, it feels restrictive to me. Like, how do normal people carry more than two things at once?! There fingers don't stretch out sideways! It just blows my mind how they are able to get anything done, ever.

I was looking up normal range of motion and found some interesting things. Did you know normal people can't bend their wrists more than 60 degrees in either direction!???!!! That is crazy to me!! I must be honest. I just don't get it! I've never been "normal", especially in that area. 

Look at this shit! 

Normal range of motion.

And then me.....


And that's just one joint! 

I may be all Gumby and pliable. But I really don't know how else to do things. It's almost a blessing and curse. A double edged sword if you will. 

That is my left arm by the way. 

It's not just being super bendy though. Obviously. There are soooooooo many aspects to EDS it's fricken bananas. Mmmm. Bananas.

My EDS has affected my heart, skin, joints, tendons, eyes, muscles, teeth, mouth, GI track, pancreas, brain, bladder, and more. It is seriously a systemic disorder. 

And it sucks. But sometimes, it is really cool. Like when I'm all alone and my back itches. I can reach the whole with ease. Picture it now... "Oh. My arm doesn't want to bend that way? I'll just dislocate it. Ah, there we go." 

Now, not everyone with EDS will be affected the same way. For some, the dislocations are incredibly painful. Some cannot dislocate on command. I can. And usually, they are not too painful. But, they still can be. Especially if they are random or accidental.

I still can't get over the normal range of motion. How do those freaks even get around!??! 

And other bendies out there that just don't understand the normal range of motion??!! I mean, really, HOW do normies live!? 

P.S. It has been brought to my attention that my background on the left of my page looks like an erect penis. Has anyone thought or noticed this?! And why was it not brought to my attention. 

Enjoy. You cannot unsee what you are about to see. 0_o




Monday, December 8, 2014

Are You Defined By Your Disease?



Ah. The age-old question... Well, maybe not age-old. But whatever. 

I have heard many people answer this question with, "No. I have EDS but EDS doesn't have me!" That is fantastic. Right?! So optimistic and such. 

But I totally disagree.... I know what you're all thinking.. What do you mean!!??? How could you NOT feel that way?! 

I feel like I have EDS and it does have me! I know it sounds crazy. Why would you want your illness to define you? Why???? Because it DOES define me!

It isn't all of me. But it is a huge part of me. I am sick. Just like I have brown hair, and brown eye. Just like I'm intelligent and sarcastic and creative. Just like I am a women and mother. 

I am defined by my illness. And that is perfectly fine with me! I don't see my illness as a bad thing. Just a part of me. More like a weird quirk or something. 

Being sick, chronically sick, means I can't just back away from it. I can't get away. And it doesn't just affect me. It affects everyone I know and love. It isn't something can be ignored or something I can beat. It's something I have to work on everyday and sometimes, something I really struggle with. 

Saying it EDS or Chiari, or any of my other diagnoses doesn't have me is like denying how important and severe they are. It's like minimizing the issue. 

And why minimize it?! It's not going anywhere!

I AM defined by my illness. But that doesn't always mean that it's a bad thing.

It is actually pretty liberating. I LOVE talking about EDS and spreading awareness. I LOVE talking about the things I struggle doing because it's REAL! 

I am not the kind of person to sugar coat or lie to make someone else feel better. I like the kind of people that can tell me things no one else will.

Like when I was pregnant, people tell you all the good stuff about being a mom. But what they don't tell you is that sometimes it just sucks and its hard and you'll lock yourself in the bathroom and cry because you just don't know what you're doing and you just know you're ruining your kids lives.  

People don't share with the bad stuff. Like it makes it less real.. But then, when you feel those things, you think you're defective because "no one said it would be like this! I must be a terrible mom!" 

But everyone struggles. It's hard. And we SHOULD talk about those things! They are important!!!

I think it is important for everyone to know our struggles as chronically ill people. They take things for granted that we can't anymore. 

I have been given a lot from being sick. I learned things about the body that I never cared about before. I don't take my life for granted. I don't take my good days for granted. The times I am able to get up and actually do something, I DO!!! Because who knows when I'll get another chance to do it?! 

I am blessed because I'm sick. I fully embrace it. And I think everyone should!

My illness does define me! I am sick and I am proud to scream it from the rooftops!

Are you defined by your illness? Comment below! 

Friday, November 28, 2014

A Few Things...

This post is just gonna be all filled with a bunch of stuff. So get ready for a fun ride with my ADHD brain. :)

First off!!! I am excited to announce that my first guest blog went live on Wednesday!! You can find it at Riot Against...

I am incredibly excited to be apart of the Riot Against... team and writing with them. I am honored that they thought I would be a good fit for their team and that I get to join them on sharing our experiences, journey's, and awareness for our conditions. I am truly blessed and honored.

Alrighty! Moving along... Next stop, Thanksgiving!

I had a WONDERFUL Thanksgiving!!!! For those that celebrate the most amazing gluttonous holiday of all time, I hope you all enjoyed it too. :) I had lots of family and great food! I made my homemade pierogis (which takes roughly 4 hours to make... So I'm pretty much doing a lot of nothing today to recover). My family even did the dishes! I didn't even ask them to! It was amazing. They said because I hosted, they would do the clean up. Which let me tell you... I super appreciated! If they hadn't done it, it would still probably be a huge mess today.. And I honestly don't even know if I would get around to cleaning it up. So YAY!! It's done, and it was great. :) We fried our turkey and it was DELICIOUS!!

I ALSO wanted to say that the Ehlers Danlos Awareness shirts and hoodies have been sent to the printer and should be arriving with you all soon!!! I'm so blown away that you all like my design! It is seriously super awesome to see people wearing a shirt/ hoodie that I designed. Thank you all for your support! I cannot express enough how honored I am. You make me smile. :)

OOOHHHHHH!!! I was recently contacted via facebook from a fellow zebra... And she told me how much she loved my blog. It seriously made my day. She was soo sweet (and obviously knows good writing when she reads it) and it really made me feel like I was making a difference. She said her whole family reads it, and she is able to relate. It also shows her family that she isn't just crazy because I go through this stuff too.

I started this blog in hopes of relating to others that may feel alone, AND so that I don't feel so alone. Knowing other people experience the same weird shit really just makes it easier to go through the weird shit..

Anyway.. I know this post is kind of just a bunch of points. But I promise, I have a normal post in my mind I will write out later..

Gotta get my littles outside and burn off some energy before make my head explode!! That would be a huge mess and "Ain't nobody got time for that."

Makes me laugh every single time...

Monday, November 17, 2014

Here We Go Again!

Well.... The t-shirts and hoodies have been requested again! I have reopened the original campaign and created a new one also with the same design but in different colors.

The links are (for the original colors/design)

Fight Like A Zebra

Same design, new colors are Here

I hope you all like them!

They have all passed their minimum and all will be printed. So don't worry about not getting it if you order. :) only a few more days!

Ship US, Canada, and International.

(Here are some of the colors available. More available than shown!)

Let's Add Another To The List!

So I met with my gastro the other day.. We talked about my EPI (exocrine pancreatic insufficiency) and my other symptoms..

First off I must explain, I stopped taking the enzymes for a while because I was getting SUPER bloated! And gasp!! Constipated!

And I mean it was so bad to the point to where I couldn't even breathe or lean forward or sit comfortably... Or really anything...

It was just super uncomfortable and I just didn't want to do it anymore.

But! The enzymes were working in the beginning. So I wasn't really sure what was going on. So I talked to my doctor and he said that now that they fixed the enzyme problem and I'm actually absorbing nutrients now that part of my digestion its fine. But, if I'm experiencing more symptoms, then there is ALSO something else afoot. Blast!

So...... We talked and he diagnosed yet another disease... Gastroparesis.

Ugh. Adding another to my list.. Which is already long enough that I forget some of the things on there.. I should really write it all down in my phone or something.

In the beginning, I remember getting so upset about new symptoms or diagnoses.... But now. I think I don't even care anymore. I mean, my whole body is slowly breaking down... So what is another thing, really?

Now I have a new pill to take.. I set my phone alarm to remind me when I need to take it (because I'm super forgetful.) throughout the day.

It's been a few days now and I honestly have seen a huge improvement!!!

I didn't even remember what it was like to NOT be bloated.. And now, I can breathe when I eat and lean forward (which I have to do because my back is too weak to support to my body for long periods of time.. like the 20 minutes it takes me to eat..)

I'm actually a bit relieved to have this diagnosis. While it's just another on my already long list, it's something that can be improved and I'm grateful for that.

It's been tricky planning out when I take my enzymes and the meds for gastroparesis, but the alarm does help. I even wrote in as a "title" which one I take and what I need to do when it goes off. Especially since I now need to change the times I eat and have to eat around different meds and what not.

It will definitely take me time to get used to, but I'm getting there. And honestly, the improvement I've already seen is enough drive to keep me going!!

Anyone else get something new added to their list lately? How are you handling it? Are you upset or just indifferent about it? Let me know in a comment below! :)

Monday, November 3, 2014

Will You Stop That DAMN Tapping!!

First off!! Exciting News!!

Soooooo!!!!!! I have been asked to be a guest blogger for another website! How freakin exciting???!!!!! I mean.. I've only had this blog like a month and a half!

It will take about a week before I am up on the site.. But I am excited about the opportunity. I feel honored. When I am introduced and my blog is up on on the other site, I will post it so you all can go and read more of my rantings.. I know you're all super excited. It's okay. Let it shine!

Anyway.. On a less exciting note.. My oldest daughter got a stomach bug... She was up all night throwing up.. And because she is only 5, that meant I was up all night.

I know for some people, sleep almost never comes. I had insomnia when I was younger.. So I can sympathize with you all.. But I don't have it anymore..

Actually... My sleep study doc thinks I may have narcolepsy. Lol. Who has narcolepsy?! I laughed when he told me.. But then I looked it up and it actually doesn't seem so far fetched an idea.

So obviously.. I need to sleep. A LOT! I am ALWAYS tired!!! Always!

And I'm usually in bed and alseep by like 10-10:30. So not being able to sleep last night till like 3 in the morning... And then waking up at 6 something with my youngest.. I'm seriously sleep deprived and exhausted..

Which of course, my Chiari is angry with me about.. Chiari likes sleep... She's a bitch that way. She is getting back at me with a crazy intense headache, horrible neck pain, more intense tremors, weakness (especially in my legs) and more dizziness.

It's been a fun morning.. I have a mountain of laundry to do because my daughter didn't know she was gonna hurl all over the fucking room.. Or her bed.. Or herself.. I still haven't gotten the smell out of my nose... :( It's horrible. She is still very tired but hasn't thrown up today so I think the worst is over..

I would still take all her pain away if I could though. That's what moms are for, right?

Well.. I should probably be going.. I'm not even sure if this post makes any sense at all... And I' starting to hear things... I hate hallucinating! It's creepy.. Too bad they couldn't be cool hallucinations like smelling fresh baked cookies.. I get weird creepy auditory ones that sound like tapping, bagging, knocking, and scratching sounds. Super annoying to say the least!

I keep looking around the house thinking I'll find some serial killer ghost or something.. Ah the things a sleep deprived mind comes up with.. Maybe it has something to do with the fact that I was watching "See No Evil" and "Saw II" last night to help keep me awake...

I hope you are all having a good and stable day! :)

(At least my yesterdays make up still looks pretty decent. Ah, the silver lining....)

Saturday, November 1, 2014

I Think I'm Dying....

That's how I feel anyway. After last night (Halloween) and walking through the ENTIRE neighborhood, I'm exhausted!

The kids had a ton of fun!! It was worth all my pain!

I really should have brought my cane though. I meant to, but forgot it in the rush to get out the door.

My kids were soooooooo excited and I was getting frustrated because they weren't listening very well. So I was just trying to get out the house and get everyone in the car so we could go to my mother-in-law's neighborhood! It was a lot of fun though. A couple of their friends went with us. It was a lot of fun!

They were so darn cute! But I am definitely paying for all the fun today..

Isn't it a bitch!? You go out to do something you rarely do, knowing you'll pay for it, but do it anyway. Some things are just worth the "been run over by 5 trucks" feeling.

Sometimes though, it wasn't worth it... And then you're just mad that you did because it wasn't worth feeling death for days after..

It's sometimes really hard to judge out if it will be worth it or not.. But usually, I'm pretty good at knowing. Learning your own limits can be challenging though. Especially in the beginning... But it gets easier.

It's weird for me and often confuses other people because some things are still easier for me to do than others. Like standing. Standing HURTS SOOOOO BAD!!! I don't know why... But I would rather be walking or pacing or something rather than standing. But then I can't walk too much or that hurts too..

There is a fine line. But then sitting hurts also. I can sit for about 10 minutes and then I need to move or readjust the way I'm sitting (if I'm not allowed to get up or recline, like in class..)

But I went and did this zip lining course with my mom a couple weeks ago (which was SUPER fun by the way) and it had all these obstacles to get through up in the trees. We took our time and I made it through the entire course with relatively minimal pain... (I mean.. it hurt a little, but not too badly that I was angry I did it.) It was a little sore for the 2 following days, but overall, I did well and it was well worth it!

But I actually have more pain and discomfort today from walking around trick or treating than I did from the zip lining course..  

And it's hard to explain to people that know walking is painful for me, that I can do that course and feel pretty okay. It's hard to explain how different it is..

It's also hard to explain that I really don't know how I will feel from minute to minute. I knew my legs were weaker yesterday than they were the zip lining day also. So I knew it would be worse. But to explain that to someone that doesn't experience it.. To have them understand that I just know I'm not going to feel well after doing something.. It's hard for them..

And to be fair. I get it. It seems like a cop-out for things you don't want to do.. Like cleaning the house.... Or grocery shopping.. Or really anything that just sucks.. I understand how others that have never felt what I feel don't believe me 100%.

I mean, honestly, if I were a perfectly healthy individual, and someone told me they couldn't do the dishes (which seriously suck for me because of the standing) because they are hurting; but wanted to go bowling.. I would a little skeptical also..

It's all about balance and honesty with your loved ones.. But there is a line.. It takes time to learn for everyone involved. Chronic illnesses don't only affect the patient. They affect everyone in the patients life.

Anyway.. I hope you are all able to rest up today if needed and that you are all enjoying your weekend!

What are some of your "run over by a truck" activities? Do you ever experience skepticism from others? How do you handle it? Comment below! :)

Monday, October 27, 2014

I Am NOT A Drug Addict!!

 



This is big one for me.

I am living in chronic pain. Every single day... I have pain. All the time. The only relief I ever get is from sleeping. (I know some can't sleep.. So trust me! I do not take that for granted!)

However.. I still can't get any of my doctors to treat my pain. Not with anything! I don't really want pain killers. But SOMETHING would be nice!

It took me around 9 years just to get a doctor to look at my back because I said I am in pain. They looked at me (a young, seemingly healthy individual) and dismissed me as being a drug seeker. No one would take me seriously! For 9 years!!! And now! I have so many problems with my spine, the only 'treatment' is surgery. Which I'm not about to do at the ripe ole age of 25. Too many risks for my liking...

So with no treatment for any of my pain.. I just deal with it. And I hate it.

I hate that their is a stigma against people with chronic pain. I hate that we can't get the care we need and deserve because of others that are addicts.

I hate that the people that ARE given pain killers for their chronic pain are looked down on by the public. They are deemed addicts because they need their pain killers to live.

Could you imagine living in pain every day, and they only way to function at a semi normal level to complete your every day tasks required pain killers. And then. On top of all that hell.. To have people judge you for using your PRESCRIBED pain killers?!

I don't understand how people think it's okay to judge others based on what they think is 'excessive'.

My bestie was once attacked on social media for saying she uses pain killers. This 'person' had the gall to tell her she is just a drug addict because she uses opioids. All I can say is what a BITCH!

What the hell does she know!? And my bestie doesn't even the whole dose prescribed to her. She is super careful and tries to just tough it out anyway.

I hate not having pain treatment.. But while I'm finding new doctors, I think it's best to not be on any medication at the same time. This way, no doctor can dismiss my symptoms due to drug side effects. (Not that they wont try and dismiss for every other reason they can think of...)

Have any of you been called or treated as drug addicts because of your pain, or pain treatment? What do you/ have you done about it?
Share your stories below!


Sunday, October 26, 2014

How Am I Suppose To Do That?

You know when you have things to do... But you're too tired or having one of those bad days.. And then you say to yourself, "I'll put it on my list."

Well I do. And let me tell you. Its great! But its also hell!

I will have a good day and think ,"Ma . Today is a good day to get some of my stuff done." So I whip out my To-Do list.

But then I notice my to-do's are like 30 pages long. Guess there were more bad days than good... Isn't that always the case?

Well then the nifty little to-do list becomes incredibly overwhelming.. And then it just becomes something else I stress about.

Good days shouldn't be spent on stressing over all the things you haven't yet done but that is usually how I spend mine.

While my lists are super duper helpful because I have so many memory issues, they are a catch 22.

Today, for example.. I was feeling okay ish and looked around my dirty house and knew I had to clean. Badly.

So I cleaned the house throughout the day.. But I also had work to do on my car (his name is Clyde by the way).

My boyfriend washed and waxed Clyde for me, but I still had to clean the inside. So after cleaning my house all day, I had to go and vacuum out Clyde. He feels much better now in case you were wondering. But now I'm so tired and my legs hurt sooooo bad!!!

I seriously miss having carpet. Our house is all tile and wood. Only carpet is upstairs. (You can imagine how often that gets vacuumed. In my defense, our vacuum is like a million years old and weighs 100k pounds.)

It's so hard to keep clean!

Luckily its all done. For today.

But I still have to wash the sheets for all 3 beds, do my homework, sell my shirts, study for my French test, take care of my kids, take care of myself, write this blog (check!), and more.. Its like never ending.

I know I know.. I'm an adult. I know!! I've been an adult for a good amount of time now. I understand. But holy moly. Its much harder to do normal things when your battling your body everyday.

Anyone else totally suck at getting everything done? Do any of you have lists that help and haunt you at the same time? Comment below!

Oh! And don't forget! Only 4 more days to get your Ehlers Danlos Syndrome shirts and hoodies!!!

http://teespring.com/edsfightzebra






Friday, October 24, 2014

Hold On, I Have To Pee.

I seriously hate my bladder.

I pee roughly 100 million times a day. (okay. I may be exaggerating a bit. It's probably more like 89 million times.)

Have you ever looked up how many times a normal healthy person wee's? Well don't you worry your pretty little mind... I've looked it up for you!

You may want to sit down (possibly on the toilet) for this one...

6-8 times a day.

That's right. You read that correctly! 8 TIMES A DAY!!!!!

I pee that much withing the first 3 hours I'm awake. I mean, I know I pee a lot.. But SERIOUSLY!!???!

Who only wees 8 times a day??? Not me!

I wish though. Doesn't that sound glorious? It does to me. Makes me wonder how much of my life is wasted by me being in the bathroom.

Stupid bladder. Stupid body! (I'm also super jealous men get to stand.. But that's a topic for another day....)

It's not really my bladders fault. But whatever. I hate it regardless.

BRB. Potty break....... Okay. I'm back.

It's not just about how frequently I pee though. It's about how frickin long it takes me to pee because my bladder doesn't empty properly. I have to sit there and try moving in different directions. I wipe, then stand for a second. Then sit back down. Then push down on my abdomen. Just to get most of it out of there so I won't have to come back in literally seconds. It's all very scientific stuff.

Back to it not being my bladders fault. Having EDS and Chiari both affect my bladder and 'urges' to go.. Because of the brainstem compression from Chiari and spine problems from my EDS, it's really no surprise I spend 96.99% of my life in the bathroom.

It drives my family crazy too. But what can I do? Nothing other than go to the damn bathroom. It hurts when I hold it too long. I try though. But then I always get worried I'll get stuck somewhere. Like all the sudden there will be crazy traffic and everyone will be stopped just before I can turn off the road and turn into the gas station for a bit of relief. (That's happened before. And I seriously almost got out of my car and just left it there to go and pee.. But I didn't.. But I ALMOST had to.)

Have you ever been driving home and have to pee so bad you start to speed a bit to make it there faster. I always get sooooooo worried that I'll get pulled over. Because seriously. If a cop were to pull me over at that moment. I'd probably pee all over myself and car. And that would be a sad day.

I have 'leaked' a bit.. but never fully wee'd myself. Yet. I'm sure one day it will happen. But so far.. It's only been little leaks. Just enough to where you're grossed out and embarrassed and have to change your panties.. But not your pants...

I know not all spoonies have bladder issues.. But there are enough of us out there...

Wow. Potty break again.

Okay. Back again....

I still can't get over 8 times a day. What the Fucking Fuck?! I am so jealous.

Well.. At least there are cell phones with apps and internet right!

I don't know what people did before them! Maybe take a crossword puzzle or something?

If anyone needs something to do while they are 'going' and needs to sit there for about 30 minutes to finish peeing... I found an app for that! It's called "Toilet Time- A Bathroom Game" by Tapps and it's free (on Android phones anyway).

Enjoy every one!




Thursday, October 23, 2014

I Swear I'm Not Crazy!

Today I'm going to talk about support systems.

Do you have one? Is it a good one? Is it large and flourishing? Do they make you feel like you're not insane in the membrane?

Well good for you!!!

I don't!

My family thinks I'm crazy and pay "too much attention to my body." Whatever the hell that means. My mom is in complete denial about EDS and says her family is only "double jointed" and has no genetic disorder. Even though that IS the EDS!! She tells me I have so many problems she doesn't understand how I'm her daughter..

Well... You gave them to me, mom. So... Ya. Makes sense I'm you're daughter..

They are all in denial.

My dad doesn't not believe me. He just doesn't think its as bad as it is. That is partially my fault though. I'm tired of telling them things about my health that they question me about and argue about. It's honestly just not worth the hassle.

I live with my boyfriend that sort of believes me but sort of doesn't. Either way... He isn't very supportive of what I experience on a daily basis.

I felt totally alone and actually started to believe the doctors that maybe I AM just crazy. (Before my diagnosis). I honestly thought about just going to a psych ward because I had obviously lost my shit.

That was before I found the one person that believed me. And now she is my best friend. And honestly. She gave me the most meaningful gift I got have ever received. Honest to goodness belief in me. She believed me about my symptoms. She listened to what was going on with my body. She heard me. She showed me empathy. She gave me direction. She pushed me to keep searching. She pushed me to self advocate. She came with me to appointments. She helped me research. She found people that could help go over my test results when my doctors dismissed things. She became my support system. And I love her. I love her for trusting me and believing that I'm not crazy.

I feel bad about it though.

Not everyone has a support system with many people in it. Others are like me that live with those that don't listen or don't understand and don't care to.

So she is the only one I have. And I feel like that puts a lot on her in our relationship. It makes me feel like a burden sometimes. Because she knows I have no one else.

I know that I am supportive of her and we help each other. He family is very supportive. But its still different when they can't feel what she does. And I get to share that with her. Something even her family still can't understand. But we share being chronically ill.

Its hard feeling like a burden. Its hard having no support system.

While I'm constantly thankful and blessed to have her in my life and on my side. I honestly don't think I give her as much as she does me.

She will never understand all that she has given to me. She saved me.

So, again. I ask you. Do you have a support system?

Of course you all do.... Me. :)

I will be there for you when you have no one else if you need. Because if anyone knows what it's like to have no one believe you or just stand in your corner, its me.

I know how defeating and devastating it is. Mentally and emotionally. And eventually physically.

People need people. Whether healthy or sick. We ALL need someone.

Never be ashamed to ask for help. Never be ashamed because you need someone to believe you. Never be ashamed because you're sick.

And I'm so sorry to those that are feeling alone. Just know... You'll never be alone.






Wednesday, October 22, 2014

Is This What Menopause Feels Like?

Does anybody else get really really hot, then really really cold?

Part of dysautonomia is not being able to regulate your body temperature. I am NOT able to regulate my body temperature. Let me tell you, it really fucking sucks!

Right now for instance I am burning up! But there are other times where I am so cold and I just cannot warm up at all. The other night I was wearing jeans, a jacket, and had a blanket on me and I was still freezing. Now, I'm wearing shorts and a sports bra and I'm sweating.

If this is what menopause is like, I'm so sorry for all those women. But honestly I am terrified for when I get to that age because I already have issues with body temperature regulation, I just can't imagine how much worse it could get.

Total side note...

The Ehlers Danlos syndrome t-shirts and hoodies came!!! I am so excited! The t-shirts have already started raising awareness and getting people asking me what the hell is with the zebra. Which was actually part of my plan in designing the shirt. I figured people with EDS will understand and those that don't have it will start to ask questions. Everyone wants to know what the hell the zebra is about. I'm excited about spreading awareness to other people and getting this disease out there. I think it's especially important to not only spread awareness to the people but to also bring more awareness to physicians.

There are so many doctors I have seen that did not know what EDS was or how it affected the body as a whole. I've met a lot that have just told me its only loose joints and stretchy skin. Those of us with it know that is not the case.

If you did not get an EDS shirt but want to order one now you can still do so at http://teespring.com/EDSfightzebra

I reopened the campaign. It will be open for 8 more days. They will arrive before Christmas if you order on this campaign!

Thank you to everyone that participated in the last campaign! It was a huge success! If your shirts have already arrived, please take a picture and post it in the comments! I can't wait to see all of you and your EDS shirt raising awareness and showing support!

You guys kick ass!!!! :)

Monday, October 20, 2014

What The Hell Happened?!

I know, I know. I'm sorry I disappeared. I have been terribly busy and on days I wasn't as much, my hands hurt so badly it became too difficult to type.

So!! Here I am! Alive and semi well.

How are all of you today?

I think what I'm going to start doing is making video posts on days I'm not feeling well. Let me know what you guys think.. Just keep in mind, if I'm not feeling well, I will probably look like shit. So bear with me. Lol.

I've been thinking lately a lot about how people treat you differently when you're sick. I mean, in a way I want people to, but at the same time, I really hate it!!

I WANT people to understand that I can't do everything I use to be able to do.. But I don't want to babied. I want people to understand that if I have to cancel plans last minute, it's not because I'm just being a bitch. But I don't want them to stop inviting me. I want to be respected. No forgotten or mothered. I don't need my 'friends' telling me, "Are you allowed to do that?!" or "Maybe you should just do_____ (fill in the blank)." I am a big girl. Sometimes I want to push past my limits because I need to. Sometimes I want to eat that super greasy pizza that is gonna screw with my pancreas. Sometimes, I just don't give a damn. Sometimes I need to feel ALIVE!!

But that is MY decision. Whether I do XYZ or not. It's my decision to make! No one elses. And it drives me crazy when others try and 'protect' me from myself.

Does this happen to anyone else?!

I mean I appreciate the concern, but I really don't want to be mothered.

I think it's that people just don't know how to treat me anymore. Now that I'm sick.. They don't know what to say. They see a cane some days. Others, no cane. They see me wearing my rings one day and maybe another day they don't. (Usually because I have a stupid brain and forget things..) But regardless, they don't know how to react to me anymore. I become my disease. And what I do and wear and walk with is noticed more than I am.

I've lost pretty much everyone I knew after my kids and after I started getting really sick. I have my best friend. And seriously, if she or I weren't sick... We probably never would have made it this far. Being sick together gives us both an understanding of each other that no one else can understand.

And I love her to bits. But it kind of really pisses me off that I can't relate to other people anymore. Not unless they are sick too. Because all they see is my disease. They can't look past the cane to see me as a person. They don't know what to say, so they don't say anything. Or even worse, they say the wrong thing. And you can't be friends with someone that never talks to you or says really stupid shit to you.

This has been my experience anyway. If it weren't for social media and groups for people like me.... I'd probably never to speak to anyone. I've met lots of great people through groups online.

I had one really great friend before I got sick... And now, she is just "too busy." Which I find hard to believe because she wasn't "too busy" for the two years before... And now we never talk anymore. I try and get no response. The only way I know she is even alive is because she still sends me cards for holidays. That is her only communication with me.

It makes me sad.

I hope all of you have no idea what I'm talking about and have never experienced this. I hope you are all as well as well is for you.

Keep stable my peeps!

Friday, October 10, 2014

Chiari t-shirts!!!!

The EDS shirts where a huge success!! I thank everyone thank helped raise awareness by purchasing a shirt/ hoodie!!

I have just started a new campaign for Chiari!!

You can find the t-shirts and hoodies at http://teespring.com/savethebrains








Multiple color options available!

Monday, October 6, 2014

I Really Hate... What Was I Saying..?

Anyone else get really bad cog fog? I do! I think that is one the most frustrating things about my illness too. I forget people I've met, I forgotten a huge portion of my life, I've forgotten my age, what I was saying mid sentence, things people tell me... 

It doesn't seem to have rhyme or reason to it either. And that is even more annoying. I hate that people tell me "You just have selective hearing" or "You just need to pay attention." It isn't about paying attention. I will give someone my full attention and seconds after the conversation, it's completely gone. Like it never happened. Sometimes, if I'm reminded I will remember it, or it will sound familiar. But not always. Sometimes, I can't recall any of the information at all. 

Poof! Totally gone! 

I hate it!! I am still in school (college getting my AA) and I can't even begin to tell you how maddening it is to know what I'm doing and then two days later I know nothing anymore. I feel like studying is a waste of my time, because who knows if I'll remember when the test comes. 

I've forgotten entire words. I once forgot how to count and the alphabet. 

I think my worst time, though, was when my dad asked me to read him dinner tab and I couldn't remember what the numbers were. I just looked at them. Feeling really stupid. Who doesn't remember what a two looks like?! This girl right here!! 

Sooo embarrassing. 

It's so embarrassing not remembering words. I will be trying to explain something to someone and totally lose words. I know them, but I can't pull them.. It's like they have been put in this secret file cabinet in my brain and it's locked. They are there.. I know they are in there somewhere, I just don't have access to them. And of course, I've forgotten the secret password. So they might as well be gone. I can't use them. So then I have to try and describe the word... And saying "that thingy.. you know.. it's big and shiny." isn't very helpful... And by the time the person I'm talking to figures out what the hell I'm saying, I actually remember, or I just give up on it, I have all ready forgotten the whole point. 

I also makes lists for everything. Shopping lists, notes, memos, to-do's, calendars everywhere. Notes are literally everywhere. And I still forgot what the hell I'm doing. You know why the notes become a problem?!

Let me enlighten you. (Maybe you can share this with those boring people that don't have cog fog..)

I make a list and write a few things down. Set the list down. Then start a new list because the other one is too far away from me and I need to write this new info down stat! So now I already 2 lists. So then I set that one down. Then I get a phone call about a doc appt, and write it on the calendar in the kitchen. But then by the time I finish my call, I forget to copy the note into my phone and the other calendar I have. So now I 3 different notes in 3 different places. And I forget where I put one, and can't remember what was on it, and then decide it wasn't important because I'm too busy to look for it because now I have to write another note about the note I lost. So I have to call a couple a people to see if I was supposed to do something with them because I know I should be doing something but I don't know what it is. 

Then I get a call from my boyfriend asking me what's for dinner. Then I remember what I was suppose to do. Grocery shop. Back to making a new list.

And this continues. With no foreseeable end.  

So! When people tell me to "write it down"... It really isn't as helpful as you'd think. I DO write it down! But unless I carry a marker and write it on my arm, I'm still going to forget. 

Thank you cog fog. 

You've really made my life more interesting. 

Thursday, October 2, 2014

I Wish It Was Just Cancer

For anyone with cancer, I don't know if you'll understand.

Having a chronic illness sucks. Every single day it sucks. We don't get better, just sometimes have better days. But we can't get healed and go on about our lives. I'm sure those that had cancer and won, they are fearful it will come back. But you get check ups, and you really only have to think about when that time for your scan comes again.

I have to think about my illness every single day. I'm scared every single day. I wonder what will happen to me every single day. Sometimes I pray that God will say that's been enough suffering and take me.

I'm not gonna go and kill myself, but I do pray that I'll pass in my sleep. Sometimes when its really bad, I think about it. Its hell living this every day. No end in sight. Just forever. Every single day.

It may sound insensitive, but its how I feel. And its how I know other's like me feel. With cancer, you either die, or you beat it. There is an end one way or another.

With chronic illnesses, there just isn't. Its always there! Every single day!!!

But its not only just that. Everyone knows what cancer is. You say to someone you have cancer, they instantly know what it is. Even though it may be "invisible" from the outside. People know.

I tell them I have Chiari and EDS and even doctors don't know what it is. People think I'm crazy. Like its a fake disease I just made up. "Omg. I met this girl today that told me she has this condition where part of her brain is falling out of her head. What a crazy person. That is not even a thing."

But it is! And it's real. And I feel it. And it scares me and angers me.

I don't want cancer. But if I had to choice between cancer and a chronic illness, I'd pick cancer every time.

It's so hard to raise awareness for these orphan conditions and less known about conditions when breast cancer is our there advertising every day. We get certain months, like September was Chiari awareness month. But people don't know what that is. People know it's breast cancer month but don't know its lupus month. Lupus is left aside. Fighting against the tits to get awareness for a condition that isn't about breasts. How can it compete. And it isn't fair.

I wish it had just been cancer. At least then there would be an end in sight. Either you win or lose, but it ends.

Wednesday, October 1, 2014

Are You KIDDING ME?!!?

Well, I had my echo at my cardio's office today. I just can't believe what happened. CAN'T BELIEVE IT!!!

Here is how it all went down.

I get there (totally late by the way, but I called and told them I would be). So the receptionist and the echo tech are behind the desk with the little window closed talking about how shitty of a person I am for making them wait. I guess they thought that little shit of a window was sound proof? They were wrong. Anyway. That was fun.

Then he called me back and of course I had to remove everything from the waist up. Whatever. He comes back in and starts the exam.

Go through he exam bullshit, take a breath, hold it in, release. Picture picture picture. Listen to heartbeat. Doppler. Done.

Cool. But my cardio wanted to look at it right away while I was there. I thought they may let me get dressed first, but no. I just sat there in that stupid paper "gown". So cardio walks in. They speak look at pictures. I overhear them saying I have PE. Then my cardio says I'm fine and my echo is normal. He leaves. So I ask the tech what is PE? (Because at this point I'm thinking pulmonary embolism.) He tells me "Oh, its pericardial effusion. You have a sac around your heart and you have too much fluid in yours. But it may just be normal for you."

SERIOUSLY!!!!!???????????????????

IT MAY JUST BE NORMAL FOR ME?!!??!!!??

I really hate when people say that. First off, it's meaningless because I have no baseline echo. So we couldn't possibly know that. But then I look it up. I have EVERY symptom! Those are the symptoms I went in there complaining about! And he told me I'm fine.

So he gave a diagnosis. Then told me it's not important. They don't plan to treat it or monitor it. In my cardio's eyes, "I'm perfectly healthy" (Please read that in a snotty snooty voice because I'm mocking him!)

I am so fucking frustrated!

How bad does it have to be before someone will acknowledge it's a problem? When I'm dead during my autopsy?! I don't understand. You just diagnosed me. That means there is a problem!! If there was no problem, there is no diagnosis!! What the FUCK!??

AHHHHH!! Now I need to find a new cardio. UGH!

Anyway.... That was my day. Hope you are all having a better day than...

I Lie About It

People ask so often "how are you?" And I often say, "I'm doing well." But I'm not doing well. The question itself has become just more of something to say than an actual question. People walk by and say how are you instead of hello. Cashiers in grocery stores. People everywhere. I lie. I say I'm fine.

But what bothers me most about this stupid phrase is the weight it holds when it's people I know asking me rather than compete strangers. Strangers don't care. They just say it not to be polite. It holds no value. But when my family asks me how am I, that hold too much value.

My mom or dad ask me how I'm doing and it feels like a loaded question. If I say I'm better today, what I'm really saying is my symptoms and pain are more tolerable today. It doesn't mean I'm all better and now I'm miraculously healthy. It means better. Not perfect. But that is how they take it. I can't say better. I can't say I'm struggling either. If I say that then of sounds like all I ever do is complain. Which is understandable because people ask all the time. Of course it would seem like I complain all the time. No one wants to talk to a Debbie downer.

But that makes it difficult for me. I can't be better or worse. Ever. But then when I'm not getting better or worse and I go in for more testing or now I have a new diagnosis, my parents wonder what happened. How do they something else is wrong? You've been better.

But better doesn't mean I'm fixed.

And honestly, its just too damb exhausting having to explain what I feel anyway. I feel like its impossible to really get across to them. And rather than waist my energy and be honest and tell them how I'm really doing, I lie about it.

Anyone else have to lie when asked how you're doing? I notice the only people I'm truthful with are other chronically ill people. How about you?

And how are you? Seriously. You can be honest with me. I actually want to know. So feel free to share, good or bad. I'm here to listen. :)

Sunday, September 28, 2014

Dear Body,

It's been a long road already. We've had our ups and downs. I'm sorry that I never cared for you much. I was young and stupid. And now... Well now, I'm usually too tired to take of you the way I should.

Thinking back when I was younger and would starve you.. I wanted to be thin so badly. I know I already was. And it wasn't your fault body. You didn't deserve that treatment from me. I'm sorry I was anorexic. I'm sorry I made you struggle. I was just struggling so much inside. I just couldn't see what everyone else saw. Honestly, I still don't. I still struggle with this today. But I know that its just me. It's not you body. It isn't your fault. So I'm sorry that you are starved now because you can't work like you should. I often wonder of its my fault for damaging you or just the disease that's taken over you. So, seriously. I'm sorry.

I'm sorry that overworked you. I didn't know my joints were so unstable. If I knew, I would have been more careful. You see though body, being born that way, I didn't know I was in a different body than all the others until it was too late. I'm sorry that you struggle so much to keep me together. I really didn't know. And trust me, I feel your pain. Ever single day. I'm suffering with you.

I'm sorry that I didn't exercise when I was able to. I thought there would be more time. I thought "I'm young. I'll exercise when I'm older and need to." But that was selfish. And now you suffer because of it.

I'm sorry that I took you for granted. I'm sorry that I never appreciated all the complex processes you did every day. And now they are gone. Digestion, proprioception, balance, coordination, eye sight, hearing, sensation of touch, breathing, all of that and more. I took you for granted. See body, I never had to think about those things. You thought about them for me. But now, I know you can't anymore. And it must be frustrating for you. I know it frustrates me.

And while I go through all the emotions of having lost your ability to take care of me, I'm reminded that I didn't take care of you. But sometimes body, I really hate you. And it just isn't fair to you. I know that. I know you tried. I know you struggle every day. I know its the disease and not really your fault. But I still hate I'm stuck in you. I hate that I don't see what others see. I hate that now starving isn't a choice I'm making. I hate that I'm hungry but I can't feed you. I hate that I walk into things because you can't see or know where the rest of you is in time and space. I know you're probably just as scared as me.

I know it body. And I'm sorry for all of it. I'm sorry that I didn't love you the way you loved me. And I'm sorry that I hate you for being sick. I try to love you. I really do. It's just so hard.

I just wanted you to know that I know. I know I hurt you. I know I was selfish. And I'm sorry. I'm sorry you're broken.



Saturday, September 27, 2014

It's Not You, It's... No, It's You...

Relationships are such a struggle being chronically ill. I don't just mean romantic relationships. I mean all relationships. Friends, romantic partners, family, work... All of them.

Relationships are hard. If you're healthy they still hard. They take a lot of work. When you have a chronic illness, they become even more difficult.

I have one friend. That's right. Just one. Singular. Friend.

But she is the best friend I could ever ask for. And why do I think that is? Because she is chronically ill too.

I know other people. And we talk sometimes. But I don't really consider them friends. They are more than aquantinces but less than friends. I don't know what to call them...

Its so hard to explain to people that aren't sick like me that I have to cancel last minute. Or if they drive an hour to see me, I just want to sit and talk. I like to be active, but my activity level changes quickly. And so does my pain. So if we have plans to go out and do something, and then by the time they get here, I can't do it anymore, people that aren't sick don't understand.

Its hard to explain that to people that don't or have never experienced it. Probably the only I can think to explain it is when people break their arm or leg or whatever. And they have a cast. And they can't go and do whatever their friends are doing. They get left out. Their friends leave them and go have fun. But our "broken bone" in this analogy doesn't ever heal...

People start to leave you out. They stop inviting you out. They leave you behind. And honestly. I totally get that. If I were a totally healthy person, I would probably do the same thing. I wouldn't say I got better miraculously now. But before I was sick. I was that person. It just makes sense. Biologically it makes sense. We have a desire to be with people similar to us. It just is the way we are. So while I think it sucks, I can't really fault them for it.

People will have the best intentions and say they will be there.. And I believe they do want to... But you lose that commonality with people.  And it's hard to explain to them what's really going on...

This is just about friendships though. It makes romantic relationships harder too. Romantic relationships need a lot of give and take. And when you hardly have the energy to get a shower, it's hard to go out f your way to do things for your partner. And often those fail too.

It takes a special person to be prepared and to love enough to be with a chronically ill person. And I know that sounds like an excuse for those that aren't strong enough. But it's not. Its just reality. And sometimes, reality just sucks.

How many of you have lost friends or relationships because of your chronic illness?

Anyone out there like me that lost all of their healthy friends in the battle? Share and comment below.

Friday, September 26, 2014

What Is Normal Anyway?

I really hate that term. "Normal." It seems like it means nothing these days. To people, to doctors, to individuals. It's just a bullshit word.

When I first found out that I had EDS, I was blown away with how 'abnormal' I was. I mean, it is normal for me to do the things I do. But it isn't normal for others. I once asked someone if their toes bent backward like mine do. There genius answer. "No. But every one is different. So who is to say that isn't just normal for you." Normal for me. Exactly! But isn't that part of the problem!? I mean, if it's normal for me, but not for the other healthy portion of the population, then that means I am are abnormal. Right?! And I don't think being abnormal is a bad thing. In fact, in this case, I think it's a very good thing. It's good because it means my symptoms and my pain and my EDS is real. It means there is something different that makes what I feel real.

But then when people diminish that by saying "Oh, well it's not abnormal, just not normal for me", I feel like it belittles my diagnosis. It belittles my pain. It belittles me.

If were the only time it's happened, I don't think it would bother me, but it isn't.

My cardiologist was telling me how healthy I am and yada yada during my stress test, that I felt the need to set him straight. I am NOT healthy. And that is a fact. I have a bunch of random health issues. But I chose to tell him about my EDS and Chiari. He didn't know what Chiari is, and that's fine because he is a cardiologist, not a neurologist or neurosurgeon. They need to know to different things. Cool. But when he challenged my EDS diagnosis. NOT COOL! He told me I need to beware of the diagnosis. Because one doctor will say you have something, and you get it in your head you do, and then he can't convince you they are wrong. RIGHT. Because you know all? Obviously not, because you don't know what Chiari is. So he then asks me if I can touch my thumb to my forearm (part of the Beighton Scale). So I answer in demonstration.

Obviously I can. Right. So I thought that would shut him up.
But it doesn't. He then tells me, "Any martial arts teacher can do that." Seriously?!? That doesn't mean it's NORMAL! AAAANNNNNDDDDD!!!!! Those people have to train to do it! They have to slowly push their ligaments past where they should go to slowly stretch them out. Like yoga instructors. But I don't. I just am this way.

See the difference? I do!

But he didn't. And it bothers me.

It bothers me when doctors diminish my 'abnormalness' and when normies diminish it. It just bothers me!

In this case, not being normal explains so much. It's like a piece of me. It's part of what I am. I have EDS and that makes me abnormal. And I'm okay with that. I'm glad it has a name. I'm glad there is an explanation for my pain. For everything. Getting that diagnosis explained sooooooooooo much!!!!! A lifetime of random things that never made sense. A lifetime of being different and not knowing why.

Anyone else feel like their abnormalness is important to them? Am I alone on this one? Comment and share below!

Don't forget! Only 10 more days for the EDS awareness shirt! Click HERE !!!

Thursday, September 25, 2014

I Should Receive An Honorary Diploma

For how much I know about EDS. I've asked countless doctors about it, and they knew very little about it, if they had even heard of it. Yes you read that right. Tons of doctors have never even heard it. I thought doctors, being in the field of medicine which is always growing and changing, had to keep studying, researching and learning. To me, its part of their job description. Yet so many of them don't do this. It really makes me wonder if those that don't keep learning, and researching new things are just so content handling the normal things and treating colds that if a "difficult" case walks in, they already know they don't want to deal with it..

Now, obviously there are great doctors out there. But it seems they are the exception. There are way more content doctors out there. And its hard for the patient to have to sift through.

Especially if/when we find those that instead of just saying they can't help us (by lack of knowledge, jurisdiction, or they just don't care to), and they label us as crazy or psych cases rather than admit they aren't "all knowing and powerful".

Getting these labels of crazy in our medical records makes finding a doctor (good or bad) to listen very difficult. They treat us like we are crazy, drug seeking, attention seeking, hypochondriacs , etc.

Every time I walk into a new doctors office, I know I have to look the right amount of sick and right amount of well. I have to convince this new doctor that there IS something wrong, and I NEED help! I have to sell them on my case. Its exhausting, stressful and usually a let down.

I've been so "over" doctors in how they treat me and dismiss me. I just stopped going for awhile. And that isn't good. Because I need help. But when I feel no one is listening, it just makes me angry! And it makes question my own sanity. I start wonder, am I just crazy? Are my symptoms real? Is my pain real? But then I remember the one test I've had that always reassures me. I had my neuro exam and they were checking my reflexes. Simple enough. But it wasn't working. I lost all of my reflexes except for one. Only my right knee. And that was only a little. None in my arms, ankles, left knee. Nothing. My leg just hung there. And that always reminds that its not in my head. There is absolutely no way I can control a reflex. By the very definition of the word.

So with all these mediocre or even worse doctors out there that just weren't interested in helping me, I took to the internet and books. I've read almost everything I can on the subject of EDS. I now know more than my doctors. And that is just on researched material.

I often feel as though those with a chronic illness, regardless of what it is, should be honorary doctors. We LIVE with it! We know more than any doctor could.

I don't know about you all, but when doctors tell me pain isn't associated with xyz, I just laugh. Where did they get their information? Not medical journals. Because I've read those. How old is their information?

I just know that I know soooooooo much about my condition now, that I am starting to look down on doctors. Just like they do to me.

So where is my honorary degree?!

Have any of you noticed similar situations? Comment below!


Quick reminder about the EDS shirt available. 11 days left! Teespring.com/edsfightzebra

Tuesday, September 23, 2014

Are You Hitting On Me And Insulting Me At The Same Time?

So I went to see my cardiologist. Ugh. I wore this long floor length dress because I had class this morning. So I also did my makeup. Which I honestly don't do very often. So I thought I looked nice. I guess a little too nice. The first thing my cardio said was how pretty I am. Which is suppose to nice I guess. But it just weirds me out. He isn't there to tell me how pretty he thinks I am. And he mentioned how "fit" I am. Even weirder. Especially since the dress was just straight down and does nothing to bring out my figure.

So immediately after saying that he tells me all my tests came back normal. Of course they did. He already told me I am perfectly healthy. Even though I'm not. My heart may be fine. But I am not health. Anyway. So after he tells me I am fine and everything is perfect and I'm perfect. I asked him why I am experiencing symptoms still.

"Oh well women your age are just anxious and hormonal."

Thank you for that. Then he tells me that I can come back ever week if I get "cardiac paranoia" and think I'm suffering a heart condition every week and he will reassure me that I'm a okay! What a fucking insult.

So then he tells me that I look tired and rundown. Probably because I'm a "super mom" that just does too much and he told me to "take breaks". Because that is possible.

Then he tells me that pizza is the number one food that leads to obesity. And he told me that I need to watch my daughter (who is 2 and was with me) to make sure she doesn't get "too puffy" (yes. He literally said too puffy). And if she starts getting "puffy" I need to give her more veggies. Like my daughter is fat or something. She I perfectly healthy and very very active. She is not fat. I do not over feed my kids. What the hell?!

So he ends the appt after that. He always dictates right after and makes us stay while he does it. So he doing his dictation and going through all my results and pauses to ask me about where my echo report is.

He never ordered an echo for me! He says "well I have to send you for the echo! That's the most important test!" When he does with the dictation, he tells me that was his mistake and he will order that today and he will read it immediately and tell me I'm fine again.

So now I have to go back again. Ugh. Next Wednesday I have my echo. Which I feel will be a huge waste of time. But I'll go anyway. Just to be sure. EDS is known to be linked to heart defects. Might as well check it out.

So that was my wonderful appt. My doctor complimented me, insulted me, and called my daughter fat in all under 10 minutes.

I've had a very busy today. So I may be out of commission tomorrow. I'm in a lot of pain already and am relaxing on the couch.

Keep stable my friends!

Share some of your crazy appointment stories in a comment below!

Don't forget to check out the EDS awareness shirt for sale. Only for a limited time!
Teespring.com/edsfightzebra
Fight like a zebra!!

Monday, September 22, 2014

My Expectations Are Really Low

I'm seeing my cardiologist tomorrow afternoon to follow up after my tests. Ya. All those super inconvenient test he sent me out for just so he could prove nothing is wrong with mW. Ironic because I have tests that have been done before that show something is wrong. But of course he wasn't interested because he knows better than anyone else. Right.

This is same doctor that told me "you look too good to have to children". During my stress test. At 7 in the morning. Before I had coffee. Ya. I'm sure I looked fantastic. What an ass..

So I'm sure tomorrow will end with me more enraged than I've been for awhile. But we will see

My expectations are soooooo low.. But I'm sure he will find a way to still disappoint.

Don't forget to check out my shirt for sale! Only available for 14 days!
teespring.com/edsfightzebra

I know you'll all be checking in tomorrow to see how my apt from hell goes. So till then, be safe and stable my friends. :)

New T Shirt Design!!!

I designed a new shirt! I LOVE LOVE LOVE this one!!!!! Only 14 days to get it!

Order it here! teespring.com/EDSfightzebra

Ships International, US and Canada.

TIP: If you have friends interested, combine the order to save on shipping!

2 mens, 2 womens, 2 hoodie options available!

Pictures below!







The back of what all read


EDS Awareness Apparel!!!!

I started a fundraiser!! You have 7 more days from today to get in the offer! There are 2 male shirts (gray or charcoal) , 2 female shirts (gray or charcoal), and a hoodie (gray only) available for purchase! If we don't reach the minimum, the shirts don't get printed and no one is charged. So reserve yours now!!

Ships to the US, Canada, and International!

TIP!!! If you have friends that are interested also, try and combine the orders to save money on shipping charges!

Help raise awareness for EDS!!!

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Women's fit in gray
The back of all shirts/ hoodie


Mans fit in charcoal
Hoodie