Falling Asleep On The Job

No one plans to fall asleep on the job. But lets face it... It happens.

And as you all know, I'm an at home mom. So I'm ALWAYS on the job.. And falling asleep during the day is never a good thing here. Unless my kids are gone and I'm alone. Which is basically never. 

However.. I can't lie and say it never happens. Not that I plan to take a nap or anything. I don't. I know my children are insane and shouldn't' go unsupervised. They find the strangest things to get into when I'm not looking. Or they fight with each other and then hit each other and then complain about it. Ridiculous. 

Sometimes though, I can't help it. Not like "I am so tired that I just let myself fall asleep for a few minutes" can't help it. But like full on, for real, can NOT help it! I will just fall asleep for who knows how long and I'm totally unaware of it even happening until I wake up on the couch, with or without drool on my face. (Yes, I'm a drooler.. I hate it but I can't do anything about that so whatever.)

Sometimes, it's only for a few minutes. Sometimes though, it may be an hour. 

It is partially due to my "possible" narcolepsy (I say possible because I didn't finish the testing, but my sleep study doc was pretty sure I have it, and honestly, so am I). But it also a result of my blood pressure bottoming out.

The latter of the two really worried me also. It happens randomly, no warning or anything. Just all the sudden, it plummets. And no one knows why. Spoooooookkkkkyyyyy. 

It's really frustrating though, and I wish I knew the answer. I feel like shit when it happens, get dizzy and nauseous, and everything in my body feels REALLLYYYY heavy. Like even thinking of moving is impossible. 

Then, I may or may not pass out. No one likes passing out, of course... But honestly, when I do, I wake up after my blood pressure has normalized so I don't have to feel like shit anymore. 

So it's kind of double edged sword. Stay awake and feel like ass, or pass out and wake feeling better. 

I am suppose to be wearing a heart monitor right now (for 30 f***ing days!!) but had to take it off early because I'm allergic to it. (Which is a whole other story. My skin is peeling off now. It's bad. But you can read more about that here How Do You Not Understand. )

So since I had to take it off, who knows what it found or didn't. I don't even know if whatever is going on with my blood pressure is even related to my heart rate or not. But seriously, something needs to get figured out.

How am I suppose to function when I can't function?! It's not even JUST the blood pressure (even though, that is one of my most debilitating symptoms) but I also can't stand or walk for long (roughly 5 minutes) periods of time because then I can't breath anymore. I have to sit back down or squat. And anytime I squat and stand back up, I get lightheaded. 

My life is so fun! Hopefully I can get some answers soon. But as of now... It's not looking likely. 

Anyone suffer from random blood pressure changes, narcolepsy, or passing out on a regular basis? Are you working or unable? How do you cope with it? Comment below! 

This Is SOOOOO Important!!

Alright. Being a women is awesome and all but there are things that just suck about it too. Like having a period. It's no fun. Or getting Pap smears.

But! Pap smears are soooooo important!!!!!

I've heard recently that doctors are now saying if you have a clear pap when you're in your teens or twenties, it's okay to wait a few years in between getting them done. No longer do we all need to go annually.

Sounds awesome, right?! I mean, let's face it... Pap's are uncomfortable and embarrassing. No one wants someone they hardly know all up in their shit. I get it! Trust me! I hate them.

And I don't know who they think they are kidding by adding a stupid picture of a puppy or whatever on the ceiling. It is NOT calming. It's weird. And it doesn't make the situation any less awful.

However, they are sooooo important!!!! Get them EVERY SINGLE YEAR!!!! Do not wait 3 years because you had a good pap previously. Get them every year!! That is why they are called the annual well woman's exam. It takes a few minutes of being uncomfortable but could save your life!

I go every year. And I have gone every year since my very first one (back in my teens when I started having sex). Every one needs to go as soon as they become sexually active.

I have always had clear paps. ALWAYS!!! Every. Single. Year.

Until this year.

Do you know how scary it is to be told your pap came back with abnormal cells? I hope none of you do. But it's scary.

I had to go and have a colposcopy (a biopsy) and my biopsy sent off for further evaluation.

I went back to my doctor after my results came back and I have precancerous cells. They did cryosurgery to freeze the cells of my cervix off. I have to go back in a few weeks to make sure all the abnormal cells are gone. If not, I will need further treatment.

It's very scary. I am very scared. It's weird knowing I may or may not still have cells that are just waiting to turn into cancer in my body.

The one thing I immediately thought about when I was told I have precancerous cells is just how glad I am I go every year.

Precancerous cells are just that. Pre cancer. It's not cancer yet. But if left there, it WILL become cancer.

Even though I have had clear paps my whole life until now, I always went anyway. Could you imagine how bad this could have been if I skipped years because they WERE clear in the past?

I don't even want to think about it.

Stay on top of your health. Keep getting checked even when there doesn't seem to be a problem.

Pap smears are just that. They are for cancer SCREENING! Do not wait until you have symptoms. Do not wait because your last pap was clear. Do not play games with your health. I am only in my mid twenties. Cancer is not dependent on age.

GO EVERY YEAR!!!

I am so glad I do not have cancer. But I wouldn't have even known I was at risk if I didn't go regularly.

I hope you all take precaution with your health and get checked every year. If not, I hope my story will inspire you to start.

5 minutes of discomfort is worth knowing you're safe.

Do you all go every year? If not, will you start? Let me know in a comment below.  

They STILL Don't Get IT!

I don't usually talk about my health conditions to my family. I talk to my friends and I write this blog about it instead.

Why don't I talk about it? Because they still don't get it!!!! And it's soooooooooo FRUSTRATING!!!

I made the mistake of talking about my bladder prolapse with my (future) mother in law. Now, I've mentioned to her before all the things wrong with my body numerous times throughout the years. Ya know what she said when I told her about my bladder....

"Well that is strange. Usually only older women that have had large babies born vaginally get bladder prolapses. You didn't have any of that and you're so young. I don't understand how that happened to you."

SERIOUSLY!!!!???? I've only told you how many times about my EDS???!!

I have a f***ing connective tissue disorder!!!!!!! How can I make that more clear???!!!!

Please! If anyone has the answer, let me know!

I don't understand how people just don't get it! I explain what it is, what it means, and how it affects EVERYTHING in my body; and they still are shocked when I tell them something that makes sense because of my illness.

Even my fiance doesn't really listen. Nor does he really care to. (Although, I think that is more because he doesn't like to feel helpless and knowing there is so much wrong means he can't do anything. It's hard for him too....)

I told him about my pills for my gastroparesis and exocrine pancreatic insufficiency (which I've been taking for months) and he was like "ya ya, okay." He just doesn't want to hear it.

Usually it doesn't frustrate me because I know this about my family, but right now, I'm actually pretty pissed about it!

People just don't listen! I know I'm young! I know!!!!!!!!! But I have a chronic illness that affects everything in my body and will continue to break my body down until I eventually die... Why is that hard to believe? It's like they think I'm making it up or something... How can I be making it up?!

I have a neurologist, neurosurgeon, psychiatrist, cardiologist, gastroenterologist, endocrinologist, OBGYN, urologist, rheumotologist, dermatologist, physical therapy, and my pcp of course. 12 f***ing dooctors and they think I'm making it up?! Wouldn't I be locked away in an mental hospital for wasting all these peoples time if nothing was wrong with me?! Wouldn't they treat my craziness if I was just a crazy person? Why do people not understand I AM SICK!????

It makes no sense!!!!

Anyone else out there with people in your life that just don't get it?! What do you do cope? Do you just ignore them or speak out? Share your experience below.

I Can't Think Of A Good Title...

I am really depressed today. I don't know why. Nothing has changed. Nothing happened to make me depressed. I just am. And I hate it...

I go through these dips every so often for no reason it seems.... It really makes everything so much challenging. I already lack motivation because, you know... I'm chronically ill and that just comes with the territory.. But this is different..

I don't want to do anything but sleep all day and drown out the world. And I can't because I'm a mom and I have two little people depending on me. And that just makes me feel worse.

Like I failed them by being so horrible or something. I know this will pass and I will be back to my normal optimistic self (even as my body literally falls apart) soon.. But waiting for it to come and act like everything is fine is just totally draining and makes me even more depressed.

People always say when you're depressed to just get up and get out if you can. Do something that you usually enjoy. It's hard because you don't want to, but it will help bring you out of the depression.

Because depression is a cycle. An evil vicious cycle. You get depressed and isolate yourself and then the isolation and lack of motivation makes you even more depressed. And the cycle continues...

Knowing this will pass is not comforting right now though. I want it gone now! I want to feel okay and I just don't. Everything seems so bleak right now...

I just recently found out that I will have to change my major in school because it isn't offered and I can't travel to another college that does offer it... I was all proactive before... I mean, I realized this more than a week ago.. But today, it's all I can think about. I don't want to change my major. That is why I CHOSE it!!! Ugh..

I also just found out last week after meeting with my urologist that my bladder is only slightly prolapsed and will not require surgery. Good news!!!! But even that has come with complications.. He thinks my symptoms are mostly neurological.. How do I fix that??!! He said that my muscle strength is still good, and that my saving grace with my prolapse (for now) is hat I never delivered my children naturally (both were c-sections). He also said that will my EDS, it will only get worse in time and IF I ever DID have the surgery, there are A LOT of risks... Which completely freaked me out.

I usually am so good at taking the good and bad and just figuring out what can be done and how I'm going to do it. Things very rarely get to me... So why now?! Why am I depressed today?!

Seriously, when it comes out of the blue like this, it's just an even bigger downer...

Anyone else experience random depression? What do you do to combat it? 

I Thought It Was A Good Thing?!

Holy shit. I didn't realize how long it's been since my last post!

It is crazy how fast time flies! It felt like only a week. Not over a month!!

Anyway. I have fun news!

After the passing of our last dog, we were planning on getting another. We wanted a weimaraner and we going to get one through a breeder. Well, then my husband saw the cutest doggy in Facebook. He was in a shelter and losing weight from stress. It was bad. So of course our plan changed and we saved him. He is so sweet! About 2 years old, Pitt/Lab mix. Such a cutie pie!

Soooo! Now that we have this new dog. And he isn't all super old and has energy (unlike our last one), I walk him twice a day now. Once in the morning before I get my kids up and ready for school, and once at night after I put them to bed.

Its great because he is so active it makes me HAVE to STAY active!

I mean it's easy to do something one day as then do nothing for 3 days. Or more like 3 months. Whatever. Don't judge. I KNOW I'm soooo out of shape!!

So this walking has been great and all because, well duh, I'm up and moving. Which is good all around.

But now that its been 2 weeks. Its not. I'm actually in more pain now than I was before. My back, hips, and knees are angry with me and they are not afraid to let me know!

What a catch 22. Work out and it will help stabilize. But working out (yes, walking is a type of exercise! I checked!) makes my pain so much worse.

I'm staying with it. For Bentley (our new fur child). But I must say, I hope I hit a comfortable place soon or I may get a wheelchair and just have him pull me.

Anyone else ever start to workout or change your routine to try and better yourself to just have it laugh at you? Did it pass? Did you stay strong or give up? Comment below! 

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!! :)

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!! :)

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?

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

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! 

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...

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! :)

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....)

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! :)

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!

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

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!

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.

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!!!! :)