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.

Hey all!

Happy Saturday! Sorry I haven’t posted I’ve been busy with school and the other day i did something kinda crazy for me. I made and instagram for nails. I love nail polish and glue on nails and trying new nail products and polishes. If ya wanna follow me on Instagram its @nailsbyemmexo1198. I just wanna do stuff and be like ya i got eds but here’s something i did. 

Havea good day all!! Xoxo

We are all in this fight together 

So story to time and rant time. I am apart of this group on Facebook and lately I’ve been realizing people are really just dragging everyone down. It’s an Ehlers-Danlos support group and at first I got support then people started going at each other for petty things. And then began the “who’s left-handed and has HEDS?” and I can’t quite begin to explain my anger and frustration of this post. Because simple things like being left-handed doesn’t make your EDS more real than someone who’s right-handed or ambidextrous.  So why does this frustrate me? I guess it’s because while no one knows what gene specifically is the reason we all have EDS but I don’t think it has anything to do with what hand you write with or what color your eyes are or what your favorite ice cream is.

And then this happened I got surgery on 2/8/17 and last night I realized my splint looks like a butterfly cocoon. So I created this picture and posted it to the group and said how the resemblance is uncanny. And someone was like “that’s funny but your picture will be deleted because it doesn’t follow the rules”. And so at this point I am thinking are they suggesting my splint is too graphic and I go comment back well it’s not graphic or bloody so I can’t see why. Well they said all pictures must be posted in comment section it’s the rule. Well let me tell you I have been apart oft his group not for a long while but when I joined it was never a rule. The only rule we had been if it is a graphic picture like rash or blood or something post it in comment section. So then this morning I see someone had posted a picture and everyone on there was commenting something good and nice and not saying it will be deleted etc.

I just feel that we all have EDS and a lot of other health issues too. So I don’t fit into society already but suggesting that I have to further fit into a mold of what EDS is because of my handedness and also by not posting a picture except in comments I feel that It’s really petty and almost like me having EDS isn’t fitting into this mold of this support group.

We are all in this fight together why make it harder than it has to be to fit into a diagnoses you already have and affects your day-to-day life.