even more things linking to EDS

So after much more research and Dr apts and test that i've had done.. 

I'm noticing more and more things that are linking my life to being a Zebra.. someone who was born with a Syndrome called Ehlers Danlos. 

If you don't know what this Syndrome is.. basically think of building a house. If you get good supplies and spend time and money on the project, it's going to be a good building. It's going to be sturdy and last a long time. But if you buy subpard supplies, use cheaper nails, still put it together the "best you can", give it a few years and it's going to start falling apart. Sure you can probably level pay for renovations (wraps, braces, surgeries) but it's not to be the best building it could have been. 

The building supplies are like the collagen in your body.. the glue that holds it together. And because it's connective tissue.. connective tissue, connects everything. 

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I'm realizing the skin issues i've always had (pimples in my ears, certain types of earrings being "eaten away" by the high acidity in my body, canker sores, stretchy skin, different types of scars, sensitive skin, pimples/calcium bubbles) are all related to this connective tissue issue.. 
Sometimes I accidentally scratch the inside of my ear when I clean my earrings, and I will break open the skin of my ear will bleed.
My ears used to get so infected, especially if it was something with gold in it. Even now if I have a nice pair of earrings, I can only wear one day or it will start turning my ear red and itchy.

I always had to paint the insides of my cheaper rings with clear nail polish, or they would turn green AND my finger would turn green. Multiple times, I would have to reapply it. 

making me a prime candidate for a cEDS (classical ehlers danlos) diagnosis. 

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I've also always gotten dizzy and had tachycardia when i stand, so i've learned to stand up slower, or take a minute to even out when i do stand too quickly.. or i'll pass out. 

I recently had a tilt table test, checking to POTS (postural orthostatic tachycardia syndrome), and they said usually people will get dizzy or pass out within 20 minutes, if they don't they are given meds to MAKE them pass out so they can record what the heart does. 
I passed out in 6 minutes flat. 

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Every time I got dental work done and had a filling, even with the Anesthetic I could always feel the drilling in the poking. I had no idea you weren't actually supposed to feel anything. This was my normal. 

I could always feel what they were doing, and the grinding of the drill… That is no fun.

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Another one I’m finding more recently… I work at the front desk member service counter of a family fitness facility… And you have to have either a membership or guest pass to get in through the gate. Whenever I go to push the button for the gate, I always zap the button and it opens the gate without pushing the button. (no wonder I’ve killed so many watches in my life… I’m electrifying) LOL. 

My apple watch so far has been good ;) But i still have my old watches, the ones that i've killed because of my super "kill electonics" powers. sometimes i'll wear them as jewelry LOL. probably because they are still pretty and i have tiny wrists, so most bracelets flop all over the place. these actually fit me.

.....

Needless to say.. this has become quite a journey. And i'm glad to finally see pieces of my health make sense. 
So many things in my life always made me feel crazy and hypochondriacal.. 

I don't like feeling like I don't know what i'm talking about. 
And I sure as heck don't like being made to feel stupid. 

SO GLAD to be taken seriously. 
Validation goes a long way!

life changes

I took inspiration from a conversation I had with a friend this weekend to dive into where i pictured myself growing up. What i wanted to do and how i felt about certain things.

I always pictured myself having kids and being a stay at home mom.. which i was so blessed to be able to do for a time!

But i also feel like i never really wanted to work. I never really wanted to have a job and work outside the home. Honestly if it weren't for the need for income, I would really only volunteer somewhere a few hours a week, and that will be all, work wise.

It's almost a relief for me, in a way, to know that my chronic illness is slowly taking that away from me. There's a part of me that doesn't want to give up my sense of independence, being able to do things for myself and feel like i'm contributing to my family, but i wouldn't be that sad if i couldn't go to a job anymore.
I'm slowly being ok with the fact that someday, i'm not going to be able to.
I have a 9 year plan.. if i can physically and mentally work until my kids get out of high school, i will feel a sense of accomplishment.

School and jobs have always really been a burden to me, and i never really realized this until recently. I'm glad God has blessed me with the ability to do these things this far.. but i also have a feeling that someday, when i'm unable to fend for myself, i will be using my voice to bring more clarity and awareness to chronic illness, and how it does rob people of these things (whether they are ok with it or not).

The hardest part for me in all of this is the fact that I'm unable to exercise like I want to, like i used to, and when i do, i have to be careful.
I am gaining weight.. which i'm not ok with. I've never been overweight in my life.
I'm losing muscle strength.. which i'm not ok with. I've always prided myself on being fit and strong.

But i'm slowly coming to terms with the fact that my goals are different now.. as long as I have moved my body a little everyday, focus on my diet changes, and be ok with not being a skinny tall girl.. i think i'll be alright.

And i'm OK.