I Am NOT A Drug Addict!!

 

This is big one for me.

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

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

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

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

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

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

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

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

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

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

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

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

How Am I Suppose To Do That?

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

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

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

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

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

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

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

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

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

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

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

It's so hard to keep clean!

Luckily its all done. For today.

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

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

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

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

http://teespring.com/edsfightzebra

Hold On, I Have To Pee.

I seriously hate my bladder.

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

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

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

6-8 times a day.

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

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

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

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

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

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

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

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

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

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

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

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

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

Wow. Potty break again.

Okay. Back again....

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

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

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

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

Enjoy every one!

I Swear I'm Not Crazy!

Today I'm going to talk about support systems.

Do you have one? Is it a good one? Is it large and flourishing? Do they make you feel like you're not insane in the membrane?

Well good for you!!!

I don't!

My family thinks I'm crazy and pay "too much attention to my body." Whatever the hell that means. My mom is in complete denial about EDS and says her family is only "double jointed" and has no genetic disorder. Even though that IS the EDS!! She tells me I have so many problems she doesn't understand how I'm her daughter..

Well... You gave them to me, mom. So... Ya. Makes sense I'm you're daughter..

They are all in denial.

My dad doesn't not believe me. He just doesn't think its as bad as it is. That is partially my fault though. I'm tired of telling them things about my health that they question me about and argue about. It's honestly just not worth the hassle.

I live with my boyfriend that sort of believes me but sort of doesn't. Either way... He isn't very supportive of what I experience on a daily basis.

I felt totally alone and actually started to believe the doctors that maybe I AM just crazy. (Before my diagnosis). I honestly thought about just going to a psych ward because I had obviously lost my shit.

That was before I found the one person that believed me. And now she is my best friend. And honestly. She gave me the most meaningful gift I got have ever received. Honest to goodness belief in me. She believed me about my symptoms. She listened to what was going on with my body. She heard me. She showed me empathy. She gave me direction. She pushed me to keep searching. She pushed me to self advocate. She came with me to appointments. She helped me research. She found people that could help go over my test results when my doctors dismissed things. She became my support system. And I love her. I love her for trusting me and believing that I'm not crazy.

I feel bad about it though.

Not everyone has a support system with many people in it. Others are like me that live with those that don't listen or don't understand and don't care to.

So she is the only one I have. And I feel like that puts a lot on her in our relationship. It makes me feel like a burden sometimes. Because she knows I have no one else.

I know that I am supportive of her and we help each other. He family is very supportive. But its still different when they can't feel what she does. And I get to share that with her. Something even her family still can't understand. But we share being chronically ill.

Its hard feeling like a burden. Its hard having no support system.

While I'm constantly thankful and blessed to have her in my life and on my side. I honestly don't think I give her as much as she does me.

She will never understand all that she has given to me. She saved me.

So, again. I ask you. Do you have a support system?

Of course you all do.... Me. :)

I will be there for you when you have no one else if you need. Because if anyone knows what it's like to have no one believe you or just stand in your corner, its me.

I know how defeating and devastating it is. Mentally and emotionally. And eventually physically.

People need people. Whether healthy or sick. We ALL need someone.

Never be ashamed to ask for help. Never be ashamed because you need someone to believe you. Never be ashamed because you're sick.

And I'm so sorry to those that are feeling alone. Just know... You'll never be alone.

Is This What Menopause Feels Like?

Does anybody else get really really hot, then really really cold?

Part of dysautonomia is not being able to regulate your body temperature. I am NOT able to regulate my body temperature. Let me tell you, it really fucking sucks!

Right now for instance I am burning up! But there are other times where I am so cold and I just cannot warm up at all. The other night I was wearing jeans, a jacket, and had a blanket on me and I was still freezing. Now, I'm wearing shorts and a sports bra and I'm sweating.

If this is what menopause is like, I'm so sorry for all those women. But honestly I am terrified for when I get to that age because I already have issues with body temperature regulation, I just can't imagine how much worse it could get.

Total side note...

The Ehlers Danlos syndrome t-shirts and hoodies came!!! I am so excited! The t-shirts have already started raising awareness and getting people asking me what the hell is with the zebra. Which was actually part of my plan in designing the shirt. I figured people with EDS will understand and those that don't have it will start to ask questions. Everyone wants to know what the hell the zebra is about. I'm excited about spreading awareness to other people and getting this disease out there. I think it's especially important to not only spread awareness to the people but to also bring more awareness to physicians.

There are so many doctors I have seen that did not know what EDS was or how it affected the body as a whole. I've met a lot that have just told me its only loose joints and stretchy skin. Those of us with it know that is not the case.

If you did not get an EDS shirt but want to order one now you can still do so at http://teespring.com/EDSfightzebra

I reopened the campaign. It will be open for 8 more days. They will arrive before Christmas if you order on this campaign!

Thank you to everyone that participated in the last campaign! It was a huge success! If your shirts have already arrived, please take a picture and post it in the comments! I can't wait to see all of you and your EDS shirt raising awareness and showing support!

You guys kick ass!!!! :)

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 Really Hate... What Was I Saying..?

Anyone else get really bad cog fog? I do! I think that is one the most frustrating things about my illness too. I forget people I've met, I forgotten a huge portion of my life, I've forgotten my age, what I was saying mid sentence, things people tell me... 

It doesn't seem to have rhyme or reason to it either. And that is even more annoying. I hate that people tell me "You just have selective hearing" or "You just need to pay attention." It isn't about paying attention. I will give someone my full attention and seconds after the conversation, it's completely gone. Like it never happened. Sometimes, if I'm reminded I will remember it, or it will sound familiar. But not always. Sometimes, I can't recall any of the information at all. 

Poof! Totally gone! 

I hate it!! I am still in school (college getting my AA) and I can't even begin to tell you how maddening it is to know what I'm doing and then two days later I know nothing anymore. I feel like studying is a waste of my time, because who knows if I'll remember when the test comes. 

I've forgotten entire words. I once forgot how to count and the alphabet. 

I think my worst time, though, was when my dad asked me to read him dinner tab and I couldn't remember what the numbers were. I just looked at them. Feeling really stupid. Who doesn't remember what a two looks like?! This girl right here!! 

Sooo embarrassing. 

It's so embarrassing not remembering words. I will be trying to explain something to someone and totally lose words. I know them, but I can't pull them.. It's like they have been put in this secret file cabinet in my brain and it's locked. They are there.. I know they are in there somewhere, I just don't have access to them. And of course, I've forgotten the secret password. So they might as well be gone. I can't use them. So then I have to try and describe the word... And saying "that thingy.. you know.. it's big and shiny." isn't very helpful... And by the time the person I'm talking to figures out what the hell I'm saying, I actually remember, or I just give up on it, I have all ready forgotten the whole point. 

I also makes lists for everything. Shopping lists, notes, memos, to-do's, calendars everywhere. Notes are literally everywhere. And I still forgot what the hell I'm doing. You know why the notes become a problem?!

Let me enlighten you. (Maybe you can share this with those boring people that don't have cog fog..)

I make a list and write a few things down. Set the list down. Then start a new list because the other one is too far away from me and I need to write this new info down stat! So now I already 2 lists. So then I set that one down. Then I get a phone call about a doc appt, and write it on the calendar in the kitchen. But then by the time I finish my call, I forget to copy the note into my phone and the other calendar I have. So now I 3 different notes in 3 different places. And I forget where I put one, and can't remember what was on it, and then decide it wasn't important because I'm too busy to look for it because now I have to write another note about the note I lost. So I have to call a couple a people to see if I was supposed to do something with them because I know I should be doing something but I don't know what it is. 

Then I get a call from my boyfriend asking me what's for dinner. Then I remember what I was suppose to do. Grocery shop. Back to making a new list.

And this continues. With no foreseeable end.  

So! When people tell me to "write it down"... It really isn't as helpful as you'd think. I DO write it down! But unless I carry a marker and write it on my arm, I'm still going to forget. 

Thank you cog fog. 

You've really made my life more interesting. 

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.

Are You KIDDING ME?!!?

Well, I had my echo at my cardio's office today. I just can't believe what happened. CAN'T BELIEVE IT!!!

Here is how it all went down.

I get there (totally late by the way, but I called and told them I would be). So the receptionist and the echo tech are behind the desk with the little window closed talking about how shitty of a person I am for making them wait. I guess they thought that little shit of a window was sound proof? They were wrong. Anyway. That was fun.

Then he called me back and of course I had to remove everything from the waist up. Whatever. He comes back in and starts the exam.

Go through he exam bullshit, take a breath, hold it in, release. Picture picture picture. Listen to heartbeat. Doppler. Done.

Cool. But my cardio wanted to look at it right away while I was there. I thought they may let me get dressed first, but no. I just sat there in that stupid paper "gown". So cardio walks in. They speak look at pictures. I overhear them saying I have PE. Then my cardio says I'm fine and my echo is normal. He leaves. So I ask the tech what is PE? (Because at this point I'm thinking pulmonary embolism.) He tells me "Oh, its pericardial effusion. You have a sac around your heart and you have too much fluid in yours. But it may just be normal for you."

SERIOUSLY!!!!!???????????????????

IT MAY JUST BE NORMAL FOR ME?!!??!!!??

I really hate when people say that. First off, it's meaningless because I have no baseline echo. So we couldn't possibly know that. But then I look it up. I have EVERY symptom! Those are the symptoms I went in there complaining about! And he told me I'm fine.

So he gave a diagnosis. Then told me it's not important. They don't plan to treat it or monitor it. In my cardio's eyes, "I'm perfectly healthy" (Please read that in a snotty snooty voice because I'm mocking him!)

I am so fucking frustrated!

How bad does it have to be before someone will acknowledge it's a problem? When I'm dead during my autopsy?! I don't understand. You just diagnosed me. That means there is a problem!! If there was no problem, there is no diagnosis!! What the FUCK!??

AHHHHH!! Now I need to find a new cardio. UGH!

Anyway.... That was my day. Hope you are all having a better day than...

I Lie About It

People ask so often "how are you?" And I often say, "I'm doing well." But I'm not doing well. The question itself has become just more of something to say than an actual question. People walk by and say how are you instead of hello. Cashiers in grocery stores. People everywhere. I lie. I say I'm fine.

But what bothers me most about this stupid phrase is the weight it holds when it's people I know asking me rather than compete strangers. Strangers don't care. They just say it not to be polite. It holds no value. But when my family asks me how am I, that hold too much value.

My mom or dad ask me how I'm doing and it feels like a loaded question. If I say I'm better today, what I'm really saying is my symptoms and pain are more tolerable today. It doesn't mean I'm all better and now I'm miraculously healthy. It means better. Not perfect. But that is how they take it. I can't say better. I can't say I'm struggling either. If I say that then of sounds like all I ever do is complain. Which is understandable because people ask all the time. Of course it would seem like I complain all the time. No one wants to talk to a Debbie downer.

But that makes it difficult for me. I can't be better or worse. Ever. But then when I'm not getting better or worse and I go in for more testing or now I have a new diagnosis, my parents wonder what happened. How do they something else is wrong? You've been better.

But better doesn't mean I'm fixed.

And honestly, its just too damb exhausting having to explain what I feel anyway. I feel like its impossible to really get across to them. And rather than waist my energy and be honest and tell them how I'm really doing, I lie about it.

Anyone else have to lie when asked how you're doing? I notice the only people I'm truthful with are other chronically ill people. How about you?

And how are you? Seriously. You can be honest with me. I actually want to know. So feel free to share, good or bad. I'm here to listen. :)