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! 

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 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

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!)

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! :)

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!

Dear Body,

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

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

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

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

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

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

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

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

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!

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

I Should Receive An Honorary Diploma

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

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

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

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

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

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

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

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

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

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

So where is my honorary degree?!

Have any of you noticed similar situations? Comment below!


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

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

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

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

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

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

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

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

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

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

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

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

Keep stable my friends!

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

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Say What Now?! Are You Sure You're A Doctor?

It's about to get real up in here!

Today, let's talk about the shitty doctors out there in the world. I know that if you have anything actually wrong with you more than a common cold, you've met them. You know, the ones that say the dumbest shit.

I'll start. So, a little over a year ago I started seeing a pcp for a long random list of symptoms. They all seemed unrelated and from the first day I met him, he told me, "You're too young to have these problems." Um right. Because young people never have problems. Ass. I know what you're thinking. That isn't so bad. Don't worry. It gets better. And by better, I mean worse. 

At another apt with him, I was getting worse. I walked into his office with tremors and purple hands. Literally, my hands were purple. And ice cold. Even in normal temps. Anyway.. Any guesses to what he told me about that?

My Purple Hand

I'm sure one of you guessed it! "You're just creating problems now. This is all psychological." That's right. He actually told me I was thinking up my symptoms. The symptoms of having my hands turn purple. I must have a veeeerrrrryyyyyyy strong mind. 

That wasn't all though. Oh how I wish I could say it was... Later, after some testing and his decision that I had "too many problems, and I can't fix you", I had one last apt with him to get my annual out of the way before I met my new doctors at Mayo. I had asked him about Ehlers Danlos Syndrome because at this point, I had already been doing all my own research. So I asked him about it. His medical professional response? "I don't know what that is. I may have read about it in medical school, but I don't remember that." So I explained it a little. Then he got mad and yelled, "If I don't know, I don't know!" Then he walked out. And I left. And that was that.  

Oh how I wish that was the only idiot doctor I met. I had to go meet a general surgeon. (Cue booing now. They are the worst) So I get to his office because they found a cyst, possibly precancerous, on the head of my pancreas and they were checking to see if I needed the Whipple. Okay, so I'm there in the room after waiting for over an hour to see him and he went to put on gloves. Gloves to just touch my abdomen. Because you can feel a pancreatic cyst like that.... So I asked him, totally in a normal voice and everything, "Are those latex? I'm allergic to latex." Innocent question, right? I thought so.. But I guess he took it as an insult. Sorry my allergy offends you. So he gets loud and says "Read the box!" So I read it real quick (to myself) and say, "okay, good. Latex free." But that wasn't good enough. He yelled at me again to "READ THE BOX!" So I read everything on the box. Out loud. The last line on the box stated, "Non-sterile."  His insane response? "Oh! So you think I need sterile gloves just to touch you?!" 

Yes, that actually happened. 

I also had a rheumatologist tell me (after he diagnosed me hypermobility syndrome) that getting the genetic test for EDS would be pointless because there is no cure. So there is no need to know.

I really don't think doctors understand what it's like for the patient. It's not just a diagnosis. It's everything. It's a name you can curse. It's something to explain to people when they undoubtedly ask, "What's wrong with you?" It's your sanity. 

I don't know how many times I've wondered if I really am just crazy because I've been dismissed so many times. I don't know how many times I've cried in anger at another doctor telling me they just don't know. Doctors don't understand that the diagnosis is much more than just a label. It's everything to us. 

These don't even take the cake though. The worst part about the hunt for a diagnosis is that doctors feel that they get to pick and choose what they tell you. If I've learned anything, it is to ALWAYS GET YOUR TEST RESULTS!!!!!!! I don't think I can say this enough! ALWAYS GET YOUR TEST RESULTS!!! ALWAYS!!!!!!

Why is that so important you ask? Surely the doctor will tell me what it important, right? Well, maybe they should. But not all of them do! 

I have first hand experience with this. So please just trust me.

I went to the ED because I was having too many neurological deficits and couldn't find a doctor to listen. The ED doc was amazing and ordered me a brain MRI. They admitted me and kept me for a few days running all these tests. A few blood tests came back off, but they sent me home anyway. They said in the brain MRI, they found something (a white matter lesion), but told me "sometimes you need more damage to figure it out. So you have to wait till you have more lesions." So I took that and was thinking MS. I saw another neurologist for a year. Many many many more tests later and still, she couldn't figure out what was wrong with me. 

So I start looking through all my papers because I my insurance changed and I needed yet another neurologist. Well.... Guess what I find in my report from my very FIRST brain MRI... My diagnosis!! 

That is the day I realized I had Chiari and NO ONE decided it was "important" enough to share with me. So, now I'm waiting to see a neurosurgeon so I can have brain surgery... Which scares the hell out of me. Especially since I've met so many below par docs. I definitely don't want one of those crazies performing surgery on my brain. 

Well.. There are more stories of course. It's taken years... years!! And I'm still not completely done yet. So I'm sure there will be more.

It's your turn!! Leave a comment to share your terrible/ crazy/ whacked out doctor stories!! 

More Than "Just Tired"

So, let's talk about fatigue. I don't know about you, but when I try to explain fatigue to the Normy's they just don't understand. I can say how tired I am and people will look at me, in the afternoon wearing pjs, un showered, house cluttered, dirty dishes filling the sink and wonder how the hell I'M tired.. I mean really I haven't done anything.. But I HAVE done things. Just things you can't really see...

When it takes all I have to just wake up in the morning and pull myself out of bed. Make then kids breakfast. And sit on the couch. That's a lot for someone with a chronic illness. It's exhausting just thinking about moving. So when I actually move, I feel like a climbed a mountain.

Its not just an I'm tired and need a nap and will feel better. Its so much more. Its debilitating. Its all consuming. Its I'm so tired I can't even think about how tired I am right now. Its a mental and emotional AND physical tired. Its ever fiber of my being. And I hate it!

I'm tired of being tired. But I'm honestly so tired that I can't even be angry about it. Anger takes too much energy.

But how do you explain to someone that works all day at a "real job" that you equally deserving of being tired. And honestly feeling as though they don't even know what real tired is? I feel like there is no way to express the way fatigue really feels and takes away from your quality of life.

I used to have very long hair. And I just couldn't keep doing it anymore. I would have to take breaks in the shower and rest my arms while washing it. So I had to cut it short. I just couldn't handle it anymore. I miss my long hair sometimes, but I just can't manage it. Fatigue is such a bitch.

Not to mention the fact that with having EDS, when I'm sitting and doing nothing, I'm actually doing a lot. I'm using very muscle I have to keep my joints in place. My muscles get so fatigued because they are constantly in use. So when I'm sitting, appearing to do nothing, I'm still working. So then when I need to yet up and use my arms and legs, my muscles are already so tired from trying to keep my joints in place that they don't work well when I need them to actually complete a task.

My fingers dislocate when I wash the dishes. My shoulders dislocate when I relax. My hips dislocate when I sit. My knees sublux when they bend. Every muscle is exhausted.

So when I say I'm tired, a nap will not help me. And I have every right to feel tired even when it appears I've done nothing. I'm trying to keep myself together.

I just want you all to know, I understand that fatigue. I understand you're not just tired. And all of us with chronic illnesses understand. You're not alone.

I often feel guilt and shame because of my fatigue. I feel sooooooo lazy!! But I'm not lazy! I never stop. Never stop fighting for my life. Never stop fighting for some sense of normalcy. I am always fighting. And I deserve to and am equally right to feel tired!

We are fighters. We never stop. We are not lazy. We just have to decide everyday what we have to fight for. When you have a limited amount of energy, you have decide what is worth that energy.

Kids can't wait. A shower can. The dishes can. Breathing can't. Etc.

Some people have explained this with a spoon theory. You wake up and have some many spoons. Each activity costs you spoons. There is no way to get more. So you must decide what is worth a spoon.

How many spoons do you have today?