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!)

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

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!!!! :)

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!

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. 

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.

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!

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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.

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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. :)

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