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!


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

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

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

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

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

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

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

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

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

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

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

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

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

Keep stable my friends!

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

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Fight like a zebra!!

My Expectations Are Really Low

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

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

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

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

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

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

New T Shirt Design!!!

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

Order it here! teespring.com/EDSfightzebra

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Pictures below!

The back of what all read

EDS Awareness Apparel!!!!

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

Ships to the US, Canada, and International!

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Help raise awareness for EDS!!!

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Thank you for helping!

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Hoodie

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 Blood Work.

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

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

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

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

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

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

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

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

EDS Apparel! Get yours now!

I started a fundraiser!! You have 10 days from today to get in the offer! There are 2 male shirts (gray or charcoal) , 2 female shirts (gray or charcoal), and a hoodie (gray only) available for purchase!

Help raise awareness for EDS!!!

You can find them here!
http://teespring.com/ehlersdanloszebra

10% of all proceeds will be donated to the Ehlers Danlos National Foundation, and the rest will be used to help me purchase the braces I need for stability. All while raising awareness for this condition!

Thank you for helping!

Women's fit in gray

The back of all shirts/ hoodie

Mans fit in charcoal

Hoodie 

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?

A Full Time Patient And Parenting

Being chronically ill changes everything! Before I got really sick, I worked full time, was a single mom, and a student. I thought I was like a super mom.

Now.... Well.... Now I'm different.

I will see all these great mom blogs and facebook posts about all these moms coming up with awesome and super creative activities for their kids. Or all those delicious yummy treats that are kid friendly to bake. You know the ones. Like making Frozen themed ice castles or the chocolate dipped bananas with all the crazy toppings or the arts and crafts for mothers day or just to do during "down time" on a Monday evening.

I don't know about any of you. But seriously!? How does anyone have the time or the energy for that shit?

Either I am doing a terrible job with managing my time, or those "moms" are lying... Or maybe aliens (most likely this one). I have enough trouble with remembering how to do normal activities. Much less coming up with new and more energy sucking ones.

Being a chronically ill mom is a really hard job! I love my kids with all my heart, but now I am planning activities around my energy levels. Sometimes, it's just a hot dog and watermelon for dinner. Sometimes I just have to lay down and do nothing for a bit and my kids will be bored out of their little minds, but they have to entertain themselves. I just can't do it all!!

And you know what? I feel GUILTY! SSSSSOOOOOOO GUILTY! I feel like I deserve the worst mom of the year award. I want to do more with my kids. I would love to go back and be the mom I was before I got sick. But I can't. I'm stuck in this crapola body, and I just can't go like I use to.

I feel guilty for not being able to give my kids all they deserve. I feel guilty that I am sick. I am a sad that my youngest may never know the me before her. I am sad that my oldest had the me before, but was too young to remember. They will never know the before sick me. And that makes me sad. I am angry that I can't be all super mom and make all the awesome arts and crafts and snacks with my kids. I'm angry that I have a hard enough time following simple instructions myself (thank you Chiari) so I have little patience when trying to bake with them. I am angry that I get so frustrated with myself and my limitations. I am heartbroken.

But I do the best I can. I try and try my best every single day. I have my bad days, and my better days. But every single one of them I am busting my ass to be the best mother I can be to those beautiful little girls.

My kids know that I love them. They know that I'm sick. They know I try and sometimes I fail. But sometimes I make it. And those times, seeing my kids light up while we play, those times make it all worth the struggle. I love those crazy girls!!

So I may not be the best, but I try my best.

 I'm their super mom. :)

What's Wrong With You?

You're too young to have so many problems.
Why do you only use a cane sometimes?
What did you do to yourself?
Ya, I get tired too.
You should push yourself harder.
You're just being lazy.
You're not trying hard enough. We all get tired.
Are you just looking for attention?
*stares stares stares*
You aren't handicapped. I saw you walking just fine a few minutes ago.
We all have problems.
It could always be worse.
Well, what are you doing about it?
You complain about everything.
You seem depressed.
Maybe it's just anxiety.
I think you're just a hypochondriac.
Gosh, what can you do?
You should try taking *insert "miracle drug" here*. My friend had that, and it totally cured her.
I know someone with *xy disease* and they can still do ....
You were fine yesterday...
You're just using that as an excuse to do nothing.
If you really wanted to, you'd get better.

If I had a dollar for every time someone said these things to me, I would pretty damn wealthy! People I don't even KNOW!!! Total strangers have asked me "What's wrong with you?" or "Why do you have a cane?" "What did you do to yourself?" "You're too young to have so many problems."

Well you know what people!!??? Apparently God doesn't discriminate against age! How can I be too young anyway? What the hell does that even mean?! Like only old people have health problems? I'm sorry, but I'm pretty sure kids, teens, and young adults get sick all the time!!

There was one time, I was watching a movie about this person that has a disease. The person I was watching  the movie with (at that time though I was not diagnosed yet and they thought I was a hypochondriac making up all my symptoms) and they asked me, "So, are you gonna start having those symptoms now?" I'm sorry, but WHAT THE FUCK???!!! NO. I have the symptoms I have asshole.

People without chronic illnesses just really don't understand it. It's really hard to get it across to people too. Without ever experiencing it, how do you explain the fatigue is not just "I'm tired and a nap will make me feel better." People can't relate to things they don't or haven't had any experience with. It makes it incredibly difficult to share with family and friends the things we go through. I often feel shame for the things I can't do anymore, or the times I can't even think about doing whatever activity, much less actually do it. Shame and guilt are some of the biggest and worst emotions I feel because I am sick. I also get resentful. But the resentment is usually misplaced. For example, I'll get angry with someone because of how I think they see me. (Which is usually not a good perception at the time I'm feeling this way.) But that anger is really created based on how I feel about myself.

Having a chronic illness is like continually going through the grieving process. I go through all the phases. Over and over and over again. I will get angry about it. Then be fine with it. Then be sad about the things I've lost. Then be indifferent. Then angry again, and I go back through the steps over and over.

But you know what? I am grieving. I'm grieving the life I thought I would have. The life I wanted to have. The things that have changed. The things that I can't do. Everything. Everything has changed.

I'm not always angry though. Being sick has giving me so much. I don't take things for granted anymore. After losing many normal functions, I really don't take for granted balance and coordination. Things I never thought about before, but now I have lost. So when I have good days I am incredibly thankful for those things. I have also met amazing people and actually my best friend is someone I connected with because I got sick. Then we realized how much we had in common and our relationship just took off! She is my friend soul mate. I love her and am blessed to have her in my life. I also have more understanding and sympathy. I don't just to conclusions and judge people like I did before.

Of course, I do still get angry. But I have gained a lot. And honestly I am blessed. I am a broken bodied beautifully messy imperfectly perfect person. But I wouldn't change myself for anything.

What are things you've been told by others that just don't understand? Do you all go through the grieving process over and over? Please share by commenting below!

Talk About A Pain In The Neck

Today has been a really hard day. First of all, I woke up late. Which sucks because then I can't lay in bed for a few minutes to give my body time to adjust and ready to get going. I get super stiff in the mornings.. Thank you EDS. Don't know what I'd do without all the cracking in the morning. It's like I'm a walking bowl of that cereal. What is it called? Rice krispies. That's it.

Any way. So I woke up late and had to rush to get my daughters up and ready, make them breakfast, and make my oldest lunch and off to school. So because I didn't have my few minutes of adjustment this morning during my headless chicken state, my neck is killing me!!!! All day long!!!! Which then gave me a Chiari headache. It's like a normal headache I guess. But it's worse and starts at the back of the head instead of the front.

But because my body hates me so much, along with my sore stiff neck and massive headache, my hands have been going numb off and on all day too.

Plus! I think I'm getting a cold. Thank you youngest daughter. I may have to keep my kids from schools and become one of those homeschooling parents. Sending them there is like a death sentence for all of us. So far, every one has been sick. And now I'm the last to get it. Fantastic. I thought maybe, just maybe, God had my back this time and saved me from the torture. Nope. I was wrong.

And I have a French test tomorrow in my class! Tomorrow will be a long day. Ugh. Hopefully God is just playing a joke and I'm not really getting sick. Like tomorrow I'll wake up totally fine (aside from my usual problems) and he'll say "just kidding".

I'm thinking tonight will be an order dinner kind of night. I don't feel well. And the city had to shut down the water to fix a pipe somewhere and now we are on a boil water notice. Seriously. I do not feel like cooking, much less boiling water to cook and clean with.

Hope all of you have had a great day, will have a great day. Stay well my fellow chiarians and zebras. I have to go order some pizza.

Ring Splints Practically Saved My Life

Okay. Maybe not saved my life. But they are seriously pretty damn awesome! For anyone that has EDS or hypermobility issues, these are amazing!!

These are ring splints. Almost like jewelry but totally practical and super helpful for the EDSer. They keep fingers in place and prevent hyper extension of the finger joints, while still providing the entire NORMAL range of motion!!! I don't know about you. But for me, having the normal the range of motion is a huge deal! Of course they make other types of splints. But who wants to walk around and try and do shit with splints for say a broken finger? No one! Unless of course you broke your finger. Please do wear them then. But other than that, these are a great option! They have helped me A LOT!!!! They can get pretty pricey though. There is a place online called EDS Ring Splints, also have an etsy page, but they are very costly. You can maybe get your insurance to pay if you can convince your doctor you need them through certain companies. But insurance will most likely want to pay for the cheap crappy plastic kind that dig into your skin and rub it raw. So! If you're like me; needing ring splints, but can't afford them, Do not fear! You can make your own!! I made these. They are not by any means perfect. But they do their job and still look nicer than the plastic ones, and they were free!!!!

If any one is interested! I will make a video of how I made them, where I got the material, and share it with all of you. I do still need a few more, but these were my most problematic areas, so these are the ones I did first.

Leave a comment if you would me to make a tutorial of sorts.

There are also some great braces for other (bigger) joints such a for shoulders and knees I will find and post later. I do not have them yet. But I hope to get the shoulder braces soon! They are my worst! Always falling out of place.

I hear KT tape works well. However, EDS can cause problems with different adhesives. So, knowing I have terrible reactions to adhesives myself, I wont try it. I have heard it works for those that can tolerate the tape though! That would definitely be a cheaper options for those of you that are able to go that route.

So let me know about the video for making your own ring splints! I would be happy to record it while I make a few more if you would like!

My Beighton Scale Test pictures as promised!

 
  
This is me. Completing the Beighton Scale. 9 out of 9. I didn't take pictures of each arm and leg because its hard to take the picture by myself. But now you get the idea and see a real person doing it rather than a picture.

He are some other random pictures of my 'abilities' and some of the effects of having EDS.

Toes bend backward

 

Atrophic scarring

Easy bruising

Raynaud's Pneumonia 

See? My hands turn purple and get ice cold

Any questions? Comment and I'll  answer them all for you. :)

It's okay. I only dislocated my finger...

I haven't really gone into all the symptoms of EDS yet. Really because there are seriously sooooooo many. And not every person will have every one. Not all the types share them. But most types overlap. And no two people even in the SAME type will be the same. Its all very complicated...

But! I do plan to write up a general symptoms list with some great links tomorrow!

For now, I will share my symptoms.

For starters. I've already mentioned my Chiari malformation. (Which I'll go into more detail about that too. Just not right now.) Chiari is common among EDSers. I know you're all dying to know what the hell that is. But right now I'm talking about EDS so you'll have to wait. I hope you don't actually die. Just hang in there. I'll get it to.

So back to my other symptoms. I have poor wound healing, easy bruising, premature membrane rupture (during my pregnancy forcing me into emergency c-section. Ironically because of my poor wound healing, my incision reopened after my 6 week check up. That was really fun. Just kidding. It sucked.) , all over joint sublaxations and dislocations, chronic joint pain, back problems, herniated disks, adult developed scoliosis, lack of proprioception (knowing where your body is in space... Not having this makes me seem very clumsy. Well let's be honest. Because I lack proprioception, I am clumsy. But I walk into things often. Let's leave it at that for now) , bad balance, brain fog (also known as cog fog. Like cognitive function. Kind of like a "brain fart" that doesn't go away. Ever), bad eye sight (which I'll go into more tomorrow), atrophic scarring, hyper extension of all my joints, fatigue, and..... That's all I can remember for now.

I'm excited to take you all on my journey with EDS and Chiari. I hope to reach others with it and help in some way I can. Even if its just to let them know I'm hear to listen.

Stay tuned! Tomorrow I will also post pictures of some of my hyper extension and my ring splints! You won't want to miss it!

What is a Zebra, Bendy, or Ehlers Danlos?

People with EDS (Ehlers Danlos Syndrome) sometimes refer to ourselves as EDSers, Bendys, or Zebras. Just like Myasthenia Gravis call themselves snowflakes. So how did EDS become Zebra? Because in medical school, doctors are taught "When you hear the sound of hooves, think horses, not zebras." A zebra is the term used to describe a rare condition or disease. So doctors are taught that the most common conditions are usually the explanation for patients symptoms. Which can be good advice. If you walk in to the doctors office with a cold, he shouldn't expect you have some rare cancer right off the bat. You look for a cold. But!!! Doctors eventually start to expect only common conditions, and forget that rare conditions/ diseases DO actually exist! This makes getting a diagnosis and treatment incredibly difficult for the patient!! So, EDSers have now become none as the medical "zebras".

Now, EDS is not a disorder on it's own, per se. It is actually a group of disorders. There are 6 different types of EDS. But we all just call it EDS unless speaking about our specific problem within our type.

The types of EDS:
   Hypermobility type
   Classical type
   Vascular type
   Kyphoscoliosis type
   Arthrochalasia type
   Dermatosparaxis type.

I have the classical type. Here is a really good link about the different types and what they all entail.
http://www.ednf.org/eds-types

EDS is diagnosed with the Beighton Scale. It is really like a flexibility test. There are 9 points and you must have 5 out of the 9. I scored 9/9. The only time I was ever disappointed to get a 100% on a test.

These are the requirements:
1. Forward flexion of the trunk with knees fully extended so that the palms of the hand rest flat* on the floor – one point
2. Hyperextension of the elbows beyond 10 degrees – one point for each elbow
3. Hyperextension of the knees beyond 10 degrees – one point for each knee
4. Passive apposition of the thumbs to the flexor aspect of the forearm – one point for each hand
5. Passive dorsiflexion of the little fingers beyond 90 degrees – one point for each hand


I remember the first time I read about EDS and thinking how weird it is that people couldn't do these things! I mean, for me, it's normal. If you have EDS, you're born with it. So I have always been able to do these things. They seem normal to me. I never thought about it. It isn't painful to do these things. I didn't have to train or stretch every day to learn to be able to do these things. I just can.

I know I mentioned it doesn't hurt to do these things in the picture. And honestly it doesn't. BUT!!!!!! That DOES NOT!!!! mean there is no pain for EDSers. I have chronic pain. And I have had chronic pain since I was in high school. It took me 8 years to even get a doctor to look at my back. They thought I was exaggerating or looking for attention, or looking for drugs. 8 Years!! And when they finally did look, it was already so damaged, that the only way to fix it now is to have surgery. Spinal surgery. At 25 years old.

Now, this obviously isn't everything. But I wanted to get this out there. Almost every doctor I have met has blown me off. I want others to know there are more like them. I want others to know about EDS!

They say EDS is rare. I don't think this is true. I think it's just rarely diagnosed.

I hope this reaches those that have EDS or think they may and are looking for answers or just someone that understands. I am here. And you are not alone.

Have you ever wanted to just rip off your arms and legs?

I have!! Especially today! My whole body is so uncomfortable today!! I guess the only way I can explain it to someone that doesn't have EDS is this: It's kind of like when you need to crack your knuckles.... You know that feeling you get where they just get uncomfortable? You try to crack them but they just wont do it? That is what I feel in every single joint. Another example would be (for those that don't crack their knuckles to understand) would be like sitting in the coach section of an airplane for your entire life. You just can't get comfortable in those stupid little, no space to even sneeze chairs. That is my life. Every single day. I am just soooooooooooo uncomfortable!!! My right shoulder is one of my worse joints. So it kept falling out of place this morning. I know it sounds crazy to someone that has never witnessed it. I mean seriously? Before this started happening to me, I wouldn't have believed anyone had they told me their joints just fall out of socket. It sounds so made up. Well.... It's not. So my shoulder wont stay in it's stupid socket today. My knees are also very loose. Which makes driving a manual extra exciting. They pop back into place every time I straighten my leg. It's not much painful anymore as it is really uncomfortable and incredibly frustrating.

Aside from my more so than usual loose joints today, I have also noticed a new symptom and new pattern with it. My left eye droops. Only in the morning. The first time it happened I thought maybe it was a stye. But it just went away by the afternoon. It isn't every day. But every time it happens it's always in the morning.

My kids are gone this weekend. They are at 'grandma's' for the weekend!!! I got to sleep in today till 7:30!! It was bliss. I love my babies to bits! But it is soo nice having a little break! I'm watching "Satisfied" on demand. Such a weird show but I can't help it.. I really like it.

I wonder if one day, doctors will be able to safely give people like me fake arms and legs we can just remove when we need to. Then I would only need to worry about dislocating my ribs. No biggy. It only takes a few days to get those back in place. Ya know what? Maybe they could throw the spine in too. I hate mine. It's so jacked up.

Hard to believe at only 25 I have more problems than my most 50 year olds. Just part of the joy I guess. You wouldn't believe how many times I've heard "You're too young to have these problems." I just respond with "God doesn't discriminate." What the hell does that even mean?! I guess it's just something to say when you don't know what to say. But here is a little piece of advice for those of you that meet someone with a chronic illness. Don't say anything if you don't know what to say! More is not better! Something is not better than nothing! Just shut up! Listening can be very helpful for the chronically ill patient. Listening and understanding and above all BELIEVING them!!! That is what you can do!

Now, here is a hilarious video for you ladies and an educational one for the men. Please take notes!
Enjoy!

I feel like people should be throwing a parade!

Why a parade? Because I have my first follower!!! That's why! I know it's just a tad bit over the top. Maybe even a bit narcissistic, but whatever. I'm pretty excited.

That is really all I had to say right now. A whole blog post for 3 sentences. Yup.

You can carry on about your day with a smile now knowing I have a follower. No need to lose sleep anymore. Good Day! :)

Chiari Malformation Awareness Month!!

September is Chiari Malformation Awareness Month! The color is Purple!!! Anyone wearing purple? Post a pic!! The Niagara Falls turned purple to show support for Chiari! How awesome is that?!?!



   

What the What?

I am 25 years old, and have two beautiful baby girls (ages 5 and 2). I am an at home mom and a student. I have Ehlers Danlos Syndrome. I feel like saying it that way makes it all AA meeting ish. Oh well. That is the reality of it! So What the heck is Ehlers Danlos you ask? No worries. I have an answer. EDS (Ehlers Danlos Syndrome) is a genetic connective tissue disorder. Connective tissue?! Ya, that's all the collagen in your body. Collagen makes up all your organs, blood vessels, skin, ligaments, etc. It's really the 'glue' that holds your body together. And mine is faulty. This can lead to issues anywhere there is collagen. For example, my ligaments are super lax (too stretchy) so my joints randomly dislocate or sublax (partial dislocation). Awesome, right?! Not really. My body is literally falling apart. But no need to go all Debbie Downer right now! This is just my intro!!! I'll get to all that depressing shit another day when I am angry about it. Right now, I am okay with it. Even though my shoulder feels like its on fire right now as I type this.

So.. Not only do I have EDS, I also have a few other disorders that are caused by my EDS. I have many herniated disks in my spine, spinal osteoporosis, craniocervical instability, Chiari Malformation (skull shaped wrong and brain is falling out of head into brain stem), adult developed scoliosis, EPI (exocrine pancreatic insufficiency), and a few other issues that have yet to be solved. 

So, there is me in a condensed form. Hope you enjoy reading about my stupid body and my life. :)