They STILL Don't Get IT!

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

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

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

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

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

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

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

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

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

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

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

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

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

It makes no sense!!!!

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

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

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

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

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

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

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

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

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

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

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

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

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

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

I 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!! :)

Are You Defined By Your Disease?

Ah. The age-old question... Well, maybe not age-old. But whatever. 

I have heard many people answer this question with, "No. I have EDS but EDS doesn't have me!" That is fantastic. Right?! So optimistic and such. 

But I totally disagree.... I know what you're all thinking.. What do you mean!!??? How could you NOT feel that way?! 

I feel like I have EDS and it does have me! I know it sounds crazy. Why would you want your illness to define you? Why???? Because it DOES define me!

It isn't all of me. But it is a huge part of me. I am sick. Just like I have brown hair, and brown eye. Just like I'm intelligent and sarcastic and creative. Just like I am a women and mother. 

I am defined by my illness. And that is perfectly fine with me! I don't see my illness as a bad thing. Just a part of me. More like a weird quirk or something. 

Being sick, chronically sick, means I can't just back away from it. I can't get away. And it doesn't just affect me. It affects everyone I know and love. It isn't something can be ignored or something I can beat. It's something I have to work on everyday and sometimes, something I really struggle with. 

Saying it EDS or Chiari, or any of my other diagnoses doesn't have me is like denying how important and severe they are. It's like minimizing the issue. 

And why minimize it?! It's not going anywhere!

I AM defined by my illness. But that doesn't always mean that it's a bad thing.

It is actually pretty liberating. I LOVE talking about EDS and spreading awareness. I LOVE talking about the things I struggle doing because it's REAL! 

I am not the kind of person to sugar coat or lie to make someone else feel better. I like the kind of people that can tell me things no one else will.

Like when I was pregnant, people tell you all the good stuff about being a mom. But what they don't tell you is that sometimes it just sucks and its hard and you'll lock yourself in the bathroom and cry because you just don't know what you're doing and you just know you're ruining your kids lives.  

People don't share with the bad stuff. Like it makes it less real.. But then, when you feel those things, you think you're defective because "no one said it would be like this! I must be a terrible mom!" 

But everyone struggles. It's hard. And we SHOULD talk about those things! They are important!!!

I think it is important for everyone to know our struggles as chronically ill people. They take things for granted that we can't anymore. 

I have been given a lot from being sick. I learned things about the body that I never cared about before. I don't take my life for granted. I don't take my good days for granted. The times I am able to get up and actually do something, I DO!!! Because who knows when I'll get another chance to do it?! 

I am blessed because I'm sick. I fully embrace it. And I think everyone should!

My illness does define me! I am sick and I am proud to scream it from the rooftops!

Are you defined by your illness? Comment below! 

Let's Add Another To The List!

So I met with my gastro the other day.. We talked about my EPI (exocrine pancreatic insufficiency) and my other symptoms..

First off I must explain, I stopped taking the enzymes for a while because I was getting SUPER bloated! And gasp!! Constipated!

And I mean it was so bad to the point to where I couldn't even breathe or lean forward or sit comfortably... Or really anything...

It was just super uncomfortable and I just didn't want to do it anymore.

But! The enzymes were working in the beginning. So I wasn't really sure what was going on. So I talked to my doctor and he said that now that they fixed the enzyme problem and I'm actually absorbing nutrients now that part of my digestion its fine. But, if I'm experiencing more symptoms, then there is ALSO something else afoot. Blast!

So...... We talked and he diagnosed yet another disease... Gastroparesis.

Ugh. Adding another to my list.. Which is already long enough that I forget some of the things on there.. I should really write it all down in my phone or something.

In the beginning, I remember getting so upset about new symptoms or diagnoses.... But now. I think I don't even care anymore. I mean, my whole body is slowly breaking down... So what is another thing, really?

Now I have a new pill to take.. I set my phone alarm to remind me when I need to take it (because I'm super forgetful.) throughout the day.

It's been a few days now and I honestly have seen a huge improvement!!!

I didn't even remember what it was like to NOT be bloated.. And now, I can breathe when I eat and lean forward (which I have to do because my back is too weak to support to my body for long periods of time.. like the 20 minutes it takes me to eat..)

I'm actually a bit relieved to have this diagnosis. While it's just another on my already long list, it's something that can be improved and I'm grateful for that.

It's been tricky planning out when I take my enzymes and the meds for gastroparesis, but the alarm does help. I even wrote in as a "title" which one I take and what I need to do when it goes off. Especially since I now need to change the times I eat and have to eat around different meds and what not.

It will definitely take me time to get used to, but I'm getting there. And honestly, the improvement I've already seen is enough drive to keep me going!!

Anyone else get something new added to their list lately? How are you handling it? Are you upset or just indifferent about it? Let me know in a comment below! :)

Will You Stop That DAMN Tapping!!

First off!! Exciting News!!

Soooooo!!!!!! I have been asked to be a guest blogger for another website! How freakin exciting???!!!!! I mean.. I've only had this blog like a month and a half!

It will take about a week before I am up on the site.. But I am excited about the opportunity. I feel honored. When I am introduced and my blog is up on on the other site, I will post it so you all can go and read more of my rantings.. I know you're all super excited. It's okay. Let it shine!

Anyway.. On a less exciting note.. My oldest daughter got a stomach bug... She was up all night throwing up.. And because she is only 5, that meant I was up all night.

I know for some people, sleep almost never comes. I had insomnia when I was younger.. So I can sympathize with you all.. But I don't have it anymore..

Actually... My sleep study doc thinks I may have narcolepsy. Lol. Who has narcolepsy?! I laughed when he told me.. But then I looked it up and it actually doesn't seem so far fetched an idea.

So obviously.. I need to sleep. A LOT! I am ALWAYS tired!!! Always!

And I'm usually in bed and alseep by like 10-10:30. So not being able to sleep last night till like 3 in the morning... And then waking up at 6 something with my youngest.. I'm seriously sleep deprived and exhausted..

Which of course, my Chiari is angry with me about.. Chiari likes sleep... She's a bitch that way. She is getting back at me with a crazy intense headache, horrible neck pain, more intense tremors, weakness (especially in my legs) and more dizziness.

It's been a fun morning.. I have a mountain of laundry to do because my daughter didn't know she was gonna hurl all over the fucking room.. Or her bed.. Or herself.. I still haven't gotten the smell out of my nose... :( It's horrible. She is still very tired but hasn't thrown up today so I think the worst is over..

I would still take all her pain away if I could though. That's what moms are for, right?

Well.. I should probably be going.. I'm not even sure if this post makes any sense at all... And I' starting to hear things... I hate hallucinating! It's creepy.. Too bad they couldn't be cool hallucinations like smelling fresh baked cookies.. I get weird creepy auditory ones that sound like tapping, bagging, knocking, and scratching sounds. Super annoying to say the least!

I keep looking around the house thinking I'll find some serial killer ghost or something.. Ah the things a sleep deprived mind comes up with.. Maybe it has something to do with the fact that I was watching "See No Evil" and "Saw II" last night to help keep me awake...

I hope you are all having a good and stable day! :)

(At least my yesterdays make up still looks pretty decent. Ah, the silver lining....)

I Am NOT A Drug Addict!!

 

This is big one for me.

I am living in chronic pain. Every single day... I have pain. All the time. The only relief I ever get is from sleeping. (I know some can't sleep.. So trust me! I do not take that for granted!)

However.. I still can't get any of my doctors to treat my pain. Not with anything! I don't really want pain killers. But SOMETHING would be nice!

It took me around 9 years just to get a doctor to look at my back because I said I am in pain. They looked at me (a young, seemingly healthy individual) and dismissed me as being a drug seeker. No one would take me seriously! For 9 years!!! And now! I have so many problems with my spine, the only 'treatment' is surgery. Which I'm not about to do at the ripe ole age of 25. Too many risks for my liking...

So with no treatment for any of my pain.. I just deal with it. And I hate it.

I hate that their is a stigma against people with chronic pain. I hate that we can't get the care we need and deserve because of others that are addicts.

I hate that the people that ARE given pain killers for their chronic pain are looked down on by the public. They are deemed addicts because they need their pain killers to live.

Could you imagine living in pain every day, and they only way to function at a semi normal level to complete your every day tasks required pain killers. And then. On top of all that hell.. To have people judge you for using your PRESCRIBED pain killers?!

I don't understand how people think it's okay to judge others based on what they think is 'excessive'.

My bestie was once attacked on social media for saying she uses pain killers. This 'person' had the gall to tell her she is just a drug addict because she uses opioids. All I can say is what a BITCH!

What the hell does she know!? And my bestie doesn't even the whole dose prescribed to her. She is super careful and tries to just tough it out anyway.

I hate not having pain treatment.. But while I'm finding new doctors, I think it's best to not be on any medication at the same time. This way, no doctor can dismiss my symptoms due to drug side effects. (Not that they wont try and dismiss for every other reason they can think of...)

Have any of you been called or treated as drug addicts because of your pain, or pain treatment? What do you/ have you done about it?
Share your stories below!

How Am I Suppose To Do That?

You know when you have things to do... But you're too tired or having one of those bad days.. And then you say to yourself, "I'll put it on my list."

Well I do. And let me tell you. Its great! But its also hell!

I will have a good day and think ,"Ma . Today is a good day to get some of my stuff done." So I whip out my To-Do list.

But then I notice my to-do's are like 30 pages long. Guess there were more bad days than good... Isn't that always the case?

Well then the nifty little to-do list becomes incredibly overwhelming.. And then it just becomes something else I stress about.

Good days shouldn't be spent on stressing over all the things you haven't yet done but that is usually how I spend mine.

While my lists are super duper helpful because I have so many memory issues, they are a catch 22.

Today, for example.. I was feeling okay ish and looked around my dirty house and knew I had to clean. Badly.

So I cleaned the house throughout the day.. But I also had work to do on my car (his name is Clyde by the way).

My boyfriend washed and waxed Clyde for me, but I still had to clean the inside. So after cleaning my house all day, I had to go and vacuum out Clyde. He feels much better now in case you were wondering. But now I'm so tired and my legs hurt sooooo bad!!!

I seriously miss having carpet. Our house is all tile and wood. Only carpet is upstairs. (You can imagine how often that gets vacuumed. In my defense, our vacuum is like a million years old and weighs 100k pounds.)

It's so hard to keep clean!

Luckily its all done. For today.

But I still have to wash the sheets for all 3 beds, do my homework, sell my shirts, study for my French test, take care of my kids, take care of myself, write this blog (check!), and more.. Its like never ending.

I know I know.. I'm an adult. I know!! I've been an adult for a good amount of time now. I understand. But holy moly. Its much harder to do normal things when your battling your body everyday.

Anyone else totally suck at getting everything done? Do any of you have lists that help and haunt you at the same time? Comment below!

Oh! And don't forget! Only 4 more days to get your Ehlers Danlos Syndrome shirts and hoodies!!!

http://teespring.com/edsfightzebra

Hold On, I Have To Pee.

I seriously hate my bladder.

I pee roughly 100 million times a day. (okay. I may be exaggerating a bit. It's probably more like 89 million times.)

Have you ever looked up how many times a normal healthy person wee's? Well don't you worry your pretty little mind... I've looked it up for you!

You may want to sit down (possibly on the toilet) for this one...

6-8 times a day.

That's right. You read that correctly! 8 TIMES A DAY!!!!!

I pee that much withing the first 3 hours I'm awake. I mean, I know I pee a lot.. But SERIOUSLY!!???!

Who only wees 8 times a day??? Not me!

I wish though. Doesn't that sound glorious? It does to me. Makes me wonder how much of my life is wasted by me being in the bathroom.

Stupid bladder. Stupid body! (I'm also super jealous men get to stand.. But that's a topic for another day....)

It's not really my bladders fault. But whatever. I hate it regardless.

BRB. Potty break....... Okay. I'm back.

It's not just about how frequently I pee though. It's about how frickin long it takes me to pee because my bladder doesn't empty properly. I have to sit there and try moving in different directions. I wipe, then stand for a second. Then sit back down. Then push down on my abdomen. Just to get most of it out of there so I won't have to come back in literally seconds. It's all very scientific stuff.

Back to it not being my bladders fault. Having EDS and Chiari both affect my bladder and 'urges' to go.. Because of the brainstem compression from Chiari and spine problems from my EDS, it's really no surprise I spend 96.99% of my life in the bathroom.

It drives my family crazy too. But what can I do? Nothing other than go to the damn bathroom. It hurts when I hold it too long. I try though. But then I always get worried I'll get stuck somewhere. Like all the sudden there will be crazy traffic and everyone will be stopped just before I can turn off the road and turn into the gas station for a bit of relief. (That's happened before. And I seriously almost got out of my car and just left it there to go and pee.. But I didn't.. But I ALMOST had to.)

Have you ever been driving home and have to pee so bad you start to speed a bit to make it there faster. I always get sooooooo worried that I'll get pulled over. Because seriously. If a cop were to pull me over at that moment. I'd probably pee all over myself and car. And that would be a sad day.

I have 'leaked' a bit.. but never fully wee'd myself. Yet. I'm sure one day it will happen. But so far.. It's only been little leaks. Just enough to where you're grossed out and embarrassed and have to change your panties.. But not your pants...

I know not all spoonies have bladder issues.. But there are enough of us out there...

Wow. Potty break again.

Okay. Back again....

I still can't get over 8 times a day. What the Fucking Fuck?! I am so jealous.

Well.. At least there are cell phones with apps and internet right!

I don't know what people did before them! Maybe take a crossword puzzle or something?

If anyone needs something to do while they are 'going' and needs to sit there for about 30 minutes to finish peeing... I found an app for that! It's called "Toilet Time- A Bathroom Game" by Tapps and it's free (on Android phones anyway).

Enjoy every one!

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!

Chiari t-shirts!!!!

The EDS shirts where a huge success!! I thank everyone thank helped raise awareness by purchasing a shirt/ hoodie!!

I have just started a new campaign for Chiari!!

You can find the t-shirts and hoodies at http://teespring.com/savethebrains

Multiple color options available!

I Wish It Was Just Cancer

For anyone with cancer, I don't know if you'll understand.

Having a chronic illness sucks. Every single day it sucks. We don't get better, just sometimes have better days. But we can't get healed and go on about our lives. I'm sure those that had cancer and won, they are fearful it will come back. But you get check ups, and you really only have to think about when that time for your scan comes again.

I have to think about my illness every single day. I'm scared every single day. I wonder what will happen to me every single day. Sometimes I pray that God will say that's been enough suffering and take me.

I'm not gonna go and kill myself, but I do pray that I'll pass in my sleep. Sometimes when its really bad, I think about it. Its hell living this every day. No end in sight. Just forever. Every single day.

It may sound insensitive, but its how I feel. And its how I know other's like me feel. With cancer, you either die, or you beat it. There is an end one way or another.

With chronic illnesses, there just isn't. Its always there! Every single day!!!

But its not only just that. Everyone knows what cancer is. You say to someone you have cancer, they instantly know what it is. Even though it may be "invisible" from the outside. People know.

I tell them I have Chiari and EDS and even doctors don't know what it is. People think I'm crazy. Like its a fake disease I just made up. "Omg. I met this girl today that told me she has this condition where part of her brain is falling out of her head. What a crazy person. That is not even a thing."

But it is! And it's real. And I feel it. And it scares me and angers me.

I don't want cancer. But if I had to choice between cancer and a chronic illness, I'd pick cancer every time.

It's so hard to raise awareness for these orphan conditions and less known about conditions when breast cancer is our there advertising every day. We get certain months, like September was Chiari awareness month. But people don't know what that is. People know it's breast cancer month but don't know its lupus month. Lupus is left aside. Fighting against the tits to get awareness for a condition that isn't about breasts. How can it compete. And it isn't fair.

I wish it had just been cancer. At least then there would be an end in sight. Either you win or lose, but it ends.

It's Not You, It's... No, It's You...

Relationships are such a struggle being chronically ill. I don't just mean romantic relationships. I mean all relationships. Friends, romantic partners, family, work... All of them.

Relationships are hard. If you're healthy they still hard. They take a lot of work. When you have a chronic illness, they become even more difficult.

I have one friend. That's right. Just one. Singular. Friend.

But she is the best friend I could ever ask for. And why do I think that is? Because she is chronically ill too.

I know other people. And we talk sometimes. But I don't really consider them friends. They are more than aquantinces but less than friends. I don't know what to call them...

Its so hard to explain to people that aren't sick like me that I have to cancel last minute. Or if they drive an hour to see me, I just want to sit and talk. I like to be active, but my activity level changes quickly. And so does my pain. So if we have plans to go out and do something, and then by the time they get here, I can't do it anymore, people that aren't sick don't understand.

Its hard to explain that to people that don't or have never experienced it. Probably the only I can think to explain it is when people break their arm or leg or whatever. And they have a cast. And they can't go and do whatever their friends are doing. They get left out. Their friends leave them and go have fun. But our "broken bone" in this analogy doesn't ever heal...

People start to leave you out. They stop inviting you out. They leave you behind. And honestly. I totally get that. If I were a totally healthy person, I would probably do the same thing. I wouldn't say I got better miraculously now. But before I was sick. I was that person. It just makes sense. Biologically it makes sense. We have a desire to be with people similar to us. It just is the way we are. So while I think it sucks, I can't really fault them for it.

People will have the best intentions and say they will be there.. And I believe they do want to... But you lose that commonality with people.  And it's hard to explain to them what's really going on...

This is just about friendships though. It makes romantic relationships harder too. Romantic relationships need a lot of give and take. And when you hardly have the energy to get a shower, it's hard to go out f your way to do things for your partner. And often those fail too.

It takes a special person to be prepared and to love enough to be with a chronically ill person. And I know that sounds like an excuse for those that aren't strong enough. But it's not. Its just reality. And sometimes, reality just sucks.

How many of you have lost friends or relationships because of your chronic illness?

Anyone out there like me that lost all of their healthy friends in the battle? Share and comment below.

What Is Normal Anyway?

I really hate that term. "Normal." It seems like it means nothing these days. To people, to doctors, to individuals. It's just a bullshit word.

When I first found out that I had EDS, I was blown away with how 'abnormal' I was. I mean, it is normal for me to do the things I do. But it isn't normal for others. I once asked someone if their toes bent backward like mine do. There genius answer. "No. But every one is different. So who is to say that isn't just normal for you." Normal for me. Exactly! But isn't that part of the problem!? I mean, if it's normal for me, but not for the other healthy portion of the population, then that means I am are abnormal. Right?! And I don't think being abnormal is a bad thing. In fact, in this case, I think it's a very good thing. It's good because it means my symptoms and my pain and my EDS is real. It means there is something different that makes what I feel real.

But then when people diminish that by saying "Oh, well it's not abnormal, just not normal for me", I feel like it belittles my diagnosis. It belittles my pain. It belittles me.

If were the only time it's happened, I don't think it would bother me, but it isn't.

My cardiologist was telling me how healthy I am and yada yada during my stress test, that I felt the need to set him straight. I am NOT healthy. And that is a fact. I have a bunch of random health issues. But I chose to tell him about my EDS and Chiari. He didn't know what Chiari is, and that's fine because he is a cardiologist, not a neurologist or neurosurgeon. They need to know to different things. Cool. But when he challenged my EDS diagnosis. NOT COOL! He told me I need to beware of the diagnosis. Because one doctor will say you have something, and you get it in your head you do, and then he can't convince you they are wrong. RIGHT. Because you know all? Obviously not, because you don't know what Chiari is. So he then asks me if I can touch my thumb to my forearm (part of the Beighton Scale). So I answer in demonstration.

Obviously I can. Right. So I thought that would shut him up.
But it doesn't. He then tells me, "Any martial arts teacher can do that." Seriously?!? That doesn't mean it's NORMAL! AAAANNNNNDDDDD!!!!! Those people have to train to do it! They have to slowly push their ligaments past where they should go to slowly stretch them out. Like yoga instructors. But I don't. I just am this way.

See the difference? I do!

But he didn't. And it bothers me.

It bothers me when doctors diminish my 'abnormalness' and when normies diminish it. It just bothers me!

In this case, not being normal explains so much. It's like a piece of me. It's part of what I am. I have EDS and that makes me abnormal. And I'm okay with that. I'm glad it has a name. I'm glad there is an explanation for my pain. For everything. Getting that diagnosis explained sooooooooooo much!!!!! A lifetime of random things that never made sense. A lifetime of being different and not knowing why.

Anyone else feel like their abnormalness is important to them? Am I alone on this one? Comment and share below!

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