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?

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....)

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

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!

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. :)

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!

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Fight like a zebra!!

More Blood Work.

Had to go get my blood work drawn this morning. Fasting. Of course. I hate that. I love a cup of coffee in the morning. Anyway. It was only 4 viles of blood today. The most I've had done at once was 12! That was ridiculous. All to look for "what was wrong with me" even though they already the diagnosis at the time. Doctors are stupid. My topic for tomorrow by the way.

My cardiologist is checking for random things... Although my test results will probably be normal because that's my luck. But I see him again on Tuesday. So we shall see.

I know only chronically ill patients will understand what I'm going to say next.

I hope he finds something. Anything really. Just something. Something to validate what I'm feeling. Something that may explain my symptoms. I don't care if its purple elephant disease. Just SOMETHING!!

I am hoping. He was a huge douche bag when I saw the last two times. (More about that tomorrow) But I can't switch. So I'm stuck with him.

Anyway, I've been feeling really shitty today. Sooooo fatigued. Mental and physical. My muscles are exhausted. Its hard to move around today. They are so tired of working, I was standing earlier today and almost collapsed.

Not having a good day. But I did manage to get some dishes done, but not all, and I prepped our dinner for tomorrow. We are having a guest come over for dinner tomorrow, so I'm making my ribs.. They are delicious and my boyfriends favorite thing I make.

So how has your day been? Good day? Rough day? Weak today? Leave a comment below!