Communicating

What’s the point of communicating if you aren’t being heard? It’s like how do I explain this. You’re in a dark room and the spot light is on you and your shouting because the light is hot and bright. But no one hears you. So you look around and find a glass between you and the person with the light switch. You can’t talk through the glass. And the person can see you and you can see them. But that’s all. You shout bang and that person still won’t shut the light off.

So then you start sweating and are sad and uncomfortable because well that person won’t listen to you or your needs. They just like watching you with the light on.

I was always told relationships are a two way street. But for me and this person it seems one way and my job is to please her and bite my tongue to not cause issues.

Well that is how it is right now for a certain close family member and I. She can talk and be mean to me and belittle me. Treat me like I am still in high school. When reality is farther from the truth. I am in college full time to get my associates for early childhood education. I live at home as its cheaper and easier with all my medical issues.

And when I tell her that the way she talks to me and treats me makes me upset she twists it to favor her image. Saying that I am taking it the wrong way or I am taking it too far. It’s the same excuses I get time and time again.

And each time I find myself apologizing to her. But for what expressing my concern and sadness for the manner in which she treats me. I apologize so she will turn the light off and we can pretend that she never did to me and that all is well and forgiven.

While for me the light is still dimmed and i find it hard to focus my eyes. And each time the same thing happens. I can’t get out of this loop.

National Rare Disease Day

Happy national rare disease day zebras and everyone alike. I spent my day at school with a massive migraine and nausea. Clearly not the way I wanted to spend my day but I feel like there is a little bit of irony. Like how else would you spend a day where you are a zebra?

I even ended my day with the heating pad and chamomile tea!

 

How did you celebrate?

I try not to be too much…

But sometimes I feel like I am. Like when people want to know me they might regret asking what’s wrong.

What’s wrong?

Everything.

I complain about my joints hurting like I am 50 years old. My knees, feet, hip, wrist, back,and neck. My depression and anxiety. Although that’s any age.

Wellyou asked what’s wrong.

People are what’s wrong. I recently had a group of college people I was friends with. Well not close. But like we hung out. Texted and the wanted to know me. Then rather than tell me they don’t want to be my friend. They get me alone and start telling me that because I’m introverted I am insecure. That they talked about me and came to the conclusion i am unhappy with my life. That I am apparently jealous of their boyfriends/significant other because they took me not joining in on their conversation as well me being jealous. Even though all I was doing was sitting on my phone relaxing. They told me I am not confident. The guy made an insinuation that I am a slut. That I need a boyfriend.

I ended up going to the bathroom crying for 10 minutes. It felt like forever.

Of course those people are no longer my friends for obvious reasons above.

You wanted to be my friend but rather than saying I’m too much you bully me and act like we are in middle school. You wanted to know me. The only regret on my part was thinking you deserved to know me.

Sidenote: I am doing better now. I still have classes with them. But I am not there to be friends or baby anyone. I am there to get my associates degree in early Childhood education to help kiddos.

To anyone else who is being bullied or has trouble making friends due to chronic pain. I am here. I will talk. You are not alone in this fight. We are ehlers danlos warriors.

Finding Strength

Sometimes I feel like I am looking through a magnifying glass searching for strength to keep going. As of right now I am on break from college. I don’t start back until the 16th but I can already feel the dread of the cold and commuting weighing on my mind.

For me though finding strength to be what the world wants to see is often a battle of whether I can bear to be fake for the sake of others. Oftentimes when making friends in college I find myself being fake or distant towards others as to avoid pity or any of the cliche advice or sayings that come along with admitting that I was born with a genetic condition that won’t ever “get better soon”.

So a solution then? Well I have found that while using my magnifying glass I am able to see there are few people that can see right through me and know something is wrong. Like i am in pain or my hip hurts because of the pressure changes and rain coming in. I realized it is possible to be real and be understood by those who do not deal with such ailments as mine.

I made a friend this year that suffers from a genetic bone disease. Her and I discussed our pains, injuries, and everything. It’s an incredible feeling when you find someone who..well, gets it! She helped me learned to be more trusting of others with my problems. While this is not a guarantee for every person you meet or make friends with. Sometimes people will surprise you when you give them the chance to prove it.

Hello….is anyone out there?

I’m alive. I feel the oxygen coming into my body and the carbon dioxide leaving. But I’m alive. Or at least so they say. To be honest, sometimes I feel like I have cinder blocks tied to both my ankles in a swimming pool. So how is it a fair fight. I mean I am not physically rebuilt by these surgeons to carry all this physical and emotional weight. I mean, how Is it fair that I have to day after day pretend that my life is really okay? I mean, how do I tell someone I am not ok without having them say well others have it worse? I mean, how do I tell someone that I have a genetic condition that is not curable? I mean how to do I politely tell someone no I have never considered trying to meditate all my problems away? How do you say that your severe anxiety and depression won’t be cured by meditation? Truthfully, I just say thank you then walk away. But what I want to say is no I need medicine I do have severe anxiety and depression. So, then I get so lonely I start to feel that if a doctor won’t listen, then no one wants to hear my issues, my secrets, my despair, and my fears. I place them in these jars in my head neatly closed but tight together. Fearing the day, there’s no more space for my jars and they all come crashing and breaking down. Releasing the dark I’ve learned to hold inside of me because when you are told to “just meditate” and “you’ll be fine” the truth is you won’t. And the truth is I wasn’t.

I was there once. My depression was so bad that I was there. I never told anyone. The day was a normal school day. I woke up and I was crying all morning. I never did anything. But thinking it was enough to scar me. I eventually made it into school. I even did a presentation in front of people. Because I learned how to act like everything was okay even when I knew it wasn’t. Finally found a doctor who listened and gave me the medicine my brain needed to function properly.

That’s not to mention the part of how my family either didn’t care about my Ehlers Danlos or dismissed it.  I had to learn that while some don’t want to believe it or hear it doesn’t mean I don’t have people who will. I found my mom, sister, and my couple of friends. I used to be mad at these family members, but now I just learned that while they want to live like the world is rosy and butterflies I know that it can be a real bitch sometimes.  And while you dismiss it, I will not stop educating people and posting about it. And sharing what I have to live with day to day for the rest of my life.

 

When “feel better” makes you feel worse

I am appreciative of the idea that people have good intentions when saying “feel better” but do they realize I have a genetic disorder that won’t “get better”. I have friend and family who say it all time and again with good intention but with a lack of knowledge to recognize that my genetic disorder won’t ever heal itself or cure itself.

The impact of hearing “feel better” for me makes me feel shitty because I will never really feel better I will just learn how to better cope with my pain and life as a patient. My collagen is defective and will never eventually work so i’ll eventually “feel better”.

For me i’d rather hear ” i am here if you need to talk” or “i am thinking of you” or ” i don’t understand what you are going through but i know you are strong and will get through it.”

Can You Repeat that?

Often times when someone says something ignorant all I can think is “can you repeat that?”While I am aware that people feel the need to correct the person or say to me “well why didn’t you say…?” And usually it’s because I am in shock. I am shocked that we humans have become so ignorant and close minded that it’s not even worth responding to that person to educate them.

So why am I talking about this whole ignorant thing. Well i’m glad you asked. So the other day in my College English Class we talked about pet peeves and if you could kill someone over the smallest pet peeve what would it be? Well mine is hearing people chew but like who doesn’t like the sound of that. Then comes my professor he says if he could kill someone over the smallest pet peeve it’d be people who use handicap things that aren’t handicap. He said and I quote “Unless your in a wheelchair like the picture shows don’t use it.You may as well have lazy written all over your forehead.” Specifically he was talking about using handicap buttons on doors.

Now I know you’re probably like well why does this bother you? Well it bothers me because being a zebra and having an invisible illness I have found myself using them because of my recent wrist surgery and new finger/joint pain. Now I don’t use a wheelchair but to assume that someone who is using it is lazy is quite simply ignorant to the idea that you don’t have to be in a wheelchair to be handicapped or disabled or whatever. And yest I took it kind of personally because he let us go on a break and I stood at a the bathroom door debating whether to just open the door normally and risk immense finger pain or use the button and avoid it all together. I looked around kind of paranoid to see if anyone was going to say something then pressed it and snuck in. So what now I have to be in a wheelchair to prove myself.

So now you see I didn’t say anything in class because I was on the verge of crying.  I know many in the EDS community believe in educating others but my god if I did that I would be late to everything and never get anywhere.

I am working on telling myself now that I am allowed to use these things even if I am not in a wheelchair.

I feel worn out but I smile anyway

What no one told me about having Ehlers-Danlos Syndrome is that sometimes it’s easier to smile through your pain rather than try explaining what hurts or what’s bothering you.

No one told me that was going to wake up feeling like old person every day. No one told me that pain was going to be a part of my life for the rest of my life everyday.

No one told me I would have to lie about how I feel on a day to day basis because trying to explain how you’re feeling or why you’re feeling a way seems to come back and bite me in the ass.

No one told me that because I am young people who are older than me would pass judgement on me and my issues.

No one told me that I would have to constantly be on the lookout for places to sit because my joints can’t handle standing for longer than a certain period of time.

Who am I?

I felt that when I made this page I would not get any followers but I’d begin to make sense of Ehlers-Danlos Syndrome and how I can fit that into my life as well as going to college and maintaining friendships and family relations. While I am aware I don’t have a lot of followers those who do follow me do so because we want to feel like we aren’t so alone in this  battle that is invisible.

But I want to make my page more welcoming even to the point of giving advice and just making friends. So I am going to try to do things about me.

1. I love dogs
2. I love going to the beach with my mom and sister every year.
3. I love jewelry mostly rings. I have like a huge amount of rings for any occasion.
4. I love salty foods like french fries and potato chips.
5. I love iced tea especially Starbucks venti iced tea lemonade mango. It’s especially good if you’re like me and forget to drink water and get migraines or headaches. But when I do hydrate more than normally I will get an iced coffee from dunkin donuts because coffee is dehydrating and I have severe IBS-D.
6. I love painting nails and I am going to nail tech school in the fall
7. I am finally really happy right now

I am alive

I haven’t posted for a while. And while I apologize I have some excellent news. I am no longer in my splint and I don’t have to do physical therapy for my wrist as having EDS has given me my whole range of motion back already.

I also haven’t posted for a while because I have started my nail Instagram where I post everything nail related. And while currently I am attempting to grow my nails out which is working I still have been putting a lot of my focus and energy into that.

I also have been trying to get back into the groove  of school of taking notes with my hand and i took my first test last week by myself and wrote it all on my own. I was really proud and stressed out even though I knew the material really well.

I will be going from this class to two summer classes which I am oddly excited about. They are my general education classes. But like there is something very satisfying about being like yes I am doing all this stuff even with all my limitations and constant exhaustion.

Then in the fall I am going to nail tech school!!! I am soooo excited about it. But let me explain. While yes my goal in the end is to be a teacher paying out of pocket for ccac has proven to be slightly straining but satisfying all the same. But I have found such a love for something I have always deeply loved. It’s a four month program and I would likely go right into working at a salon which there are a ton of around where I live. And I would make side cash that would help pay for college and possible better rent able place for my mom and I to live in.

So yes I am going to be a teacher eventually. In the meantime I am going to focus on getting my nail license and eventually do people’s nails and make money.