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.

 

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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.

Hiya I’m alive. Doing well I guess but 

I am having a new manifestation of a symptom of Ehlers Danlos Sydrome. My saying I always say is “there’s always something”. I am having weird muscle spasms/twitching in my face and arm and legs. They aren’t painful but they seem to almost confuse me and make me forget what I am doing and where I am. I’m worried as thy are becoming more frequent happens 3 to 5 times a day. 

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 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.