EDS dishes ;)

Just wanna let you know in all my clumsiness, I have not had any of our Pyrex or corel break :-) shout out to these brands for making kitchenware that lasts, even through being dropped again and again.

i don't grip very well, and at times my fingers bend back when they shouldn't. so knowing that i have something solid that isn't going to easily fall apart.. makes a difference in my mind ;)

leg stopped working- crazy

Weird thing just happened… I went and dumped out my fruit and veggie scraps into the compost pile and on the way back my right leg felt like it stopped working. I tried to take a step and it was just like this nerve pinch thing going on and it took me a while to get to the back door but I made it. And now I am OK.

something to do with the bad discs in my back.
ridiculous.

cat health check

So this morning we weighed the cats because we haven’t in a while. We put Harley on a type of diet because she was 13 pounds last time we checked her months ago (we were giving her three scoops of dry food today, we bumped it back to two scoops of dry food a day). Unfortunately she has gained another pound which is interesting. Tiger is 10 pounds so he’s a healthy boy :-) good to know. He’s keeping his playfulness which is keeping him active, and now that we know he has an iron deficiency, we’ve integrated chicken or beef wet food into his diet once a week. So looking up information on how to help Harley lose weight still, interesting information I found out that she should be having some wet food to boost her protein and we need to play with her more :-) so good information, some changes to be made.

our choices matter

our choices matter, they don't just effect us. our choices effect our world, no matter how small or large that circle may be.

enough it enough- we can't just stand here and let other people take action around us. we have to do something. one small action creates a larger effect than you think.

Daily devotions

We hear different things like doing it first thing in the morning before anyone else is up is the best way to go, or carving out 30 minutes before work, but if I do it first thing in the morning before anyone gets up I’ll be getting up at 4:30 in the morning and I wouldn’t be able to focus and I wouldn’t be able to be awake enough because I have to get my kids up at 5 AM for the bus and I am still struggling to wake up after they’re on the bus. I honestly think that finding the time and space that works for you best is the best way to go. Now that everyone is on the bus and I have woken up and I have been able to fuel my body so I can focus and not worry about what my body is telling me it’s best for me. My husband is still in bed, he can get up when he needs to. The kids are off to school, I’ve had my coffee and I’m sitting here with my pills and water, ready to dive into the word. This works best for me, what works best for you?

Perfect timing

God’s timing is perfect :-) even in the little things. Actually I think mostly in the little things. Because it’s the little things that add up to the big things.

My husband is at work today and I got up to get my kids on the bus by the time he left for work I had already been up for three hours and my body was telling me I needed to rest. Basically I crashed, I was down for three hours. When I got up I kind of mentally kicked myself for being down for so long, but I’m also getting used to the fact that when my body tells me I need to do something, then I need to do it. Because one way or another, it’s going to happen.

So today I didn’t start cleaning the bathroom until close to 2 o’clock instead of usually getting it done in the morning. There I am spraying down the mirrors and I turn around and look at the little decorative shelf in the corner of the bathroom and I text my husband because he has taken it upon himself to use this little shelf as a makeshift art corner ;-). So I text him I thought that comes to my mind about his bathroom artwork LOL. And it being Monday I totally forgot he is in his work meeting, and he texted me back that he was indeed in the meeting and he had forgotten to put his watch on silent. So the text had come through, it had made the ding sound out loud, and it was about artwork in the bathroom LOL. If it wasn’t for all of this timing working together, this Monday could’ve been just Monday and boring and feeling like it’s dragging you down because the weather outside is not great, it’s not that sunny, it’s cloudy. It’s got a breeze but it’s like a chill breeze. So today could’ve been a very different day if that timing had not been spot on.

Thank you God for perfect timing in the little things, just because we need to learn to listen and to do when something even as unimportant sounding as our bodies tell us to do something.

Masking - we all do it

You use your mask because you just want to fit in. We don't want to stand out.

Psalm 139: 13+14

13 For you created my inmost being; you knit me together in my mother’s womb.14 I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well.

You were fearfully and wonderfully made. 

A friend of mine watching my blog last week actually brought that saying up. 

Fearfully and wonderfully made. 

We feel self-conscious about being different. 

We are so afraid of how other people are going to respond. 

Honor one another above yourself. Romans 12:10

You are uniquely you. 

If they stare, let them stare. It's hard to blend in when you were made to stand out. 

Reminds me of a Rich Mullins song-
If I Stand

You are fearfully and wonderfully made. 

-------
This message made me cry. It came to me at the opportune time on Sunday, as I had put on a dress that I made to wear to church, and just didn't feel right in it (I didn't feel like I could pull it off, and in my head I was mulling through what they would think of me, being a new person to the church and not being normal, etc), so I subbed it for a vintage sundress. 

In the end, i'm glad I didn't wear the dress yet, because I really did need to adjust it. It didn't feel quite "finished". 

In general, I don't like to stand out. I just don't, it's not me. But the talents and abilities that God gave me are not the kind that make me blend in. They are meant to stand out. Unfortunately I struggle with that because being autistic, i'm a wall flower. I don't want people to see me. I don't like to have to interact. But if i'm my true self, I'm putting myself out there. It's not easy for me to be face to face and have to say things and have to respond and answer questions, etc. 

So I struggle with this concept a lot. 

stupid gender crap- yes i'm being blunt

i'm so sick and tired of seeing all this LGBTQ- i'm probably missing a letter because there are so many different genders and mentalities and sexual and physical orientation things going on.

it's ridiculous, in my mind.

people actually getting kicked out of facebook groups because they post something that someone else doesn't agree with .. freakin' knock it off. if you don't agree with someone, move on.

"opinions are like buttcracks.. everyone has one and most of the time they stink"

gender fluid
gender binary
transgender

"i feel like a man today"
"i feel like a woman today"

it's OK to be in touch with your feminine and masculine sides, that doesn't make you another gender. that makes you a more open minded human being.

people.. all the people..

ok.. so.. i struggle.
i struggle with relationships.
mostly because of different points of view.

i have mental problems (anxiety and depression, cognitive dysfunction)
i have physical problems
i am autistic
....

all this to say.. i know what i believe in
but i also am very empathetic and find that i can very easily see other people's points of view and feel what they feel, the problem here is that sometimes i can find myself very confused and lost in information and it can become very overwhelming.

i like to try to understand every point of view..
but i have to remind myself..
that's impossible.

i like to research. but then at times, it becomes to much and i shut down and start crying.

....
i think my main point is.. we are all different.
we all have different lives and different beliefs and different opinions. and that's ok!

it just seems to me that we get caught up in our differences so much that we become blind to the sense of community there is.
....
i also think there is a problem with trying to understand all belief styles when really we should focus on our own personal beliefs and study them so we know them best.

and then share the information we have!

....

reminds me of lyrics.. "why can't we all just get along?!"

love the people.. all the people :) no matter what our differences are. we are all people! and we should learn to live better together!

the multifaceted me

So i'm a zebra

I have hEDS (hypermobile Ehlers danlos syndrome)- 

This is why my body acts the way it acts.
And doesn't act the way it should.
This is a genetic connective tissue disorder, my connective tissues are like limp noodles instead of new rubber bands.

I have anxiety and depression 

I have a sleep disorder (insomnia), a nerve disorder (RLS and possibly more)

migraines with multiple triggers (dehydration, change in weather, bright sunlight, neck instability, not enough sleep, not enough food, some scents/candles/oils/perfumes)

my thumbs are permanently dislocated, need to wear rings and wraps and custom made hand braces.

i run into things all the time because of my proprioception  (from EDS, effects my balance, my hands are floppy so i drop things)

my muscles are weak, my tendons are stretched out

my skin is so soft i don't know when it's too dry, it's stretchy, it's sensitive/easily cut myself

also heat/cold sensitive because of POTS- because of EDS (get lightheaded, get brain fog, forget things, can't handle hot tubs or cold air or direct sunlight very well)

because my joints are floppy, my feet flatten when i stand, i had to have custom made insoles. i have unstable ankles, they roll/sprain easily. my toes hurt 

i have morton's neuroma in my right foot 

I have thoracic outlet syndrome, functional scoliosis, GERD/reflux/IBS

I have dysfunction of my SI joint, pelvic floor

scapular dyskenesis

my neck has straightened and partially reversed (very unstable)

chondromalacia patella

bursitis of the greater trochanter, knees

bicep tendonitis

tinnitus in both ears, TMJD causing teeth grinding, jaw joint popping, sore jaw muscles 

i have multiple food sensitivities (gluten, soy, lactose, hard beans, refined sugar, acidic foods/tomatoes/grapefruit/oranges/lemons, food with nitrates/hot dogs/red wine/bacon/sausage, fatty foods/beef)

.....

I'm also an Aspie (high functioning autism, Aspergers)

i have a hard time putting my thoughts into words verbally, that's why i write

i'm a talented musician (singing, piano, flute, tried guitar)

i'm a talented writer
i'm a very craft oriented person, working mostly with textiles and accessories 

i love to help people, no matter what that means

i'm good at painting nails.. another art form and hobby for me
and reading, i love to read. mostly informational and/or research

i'm fairly poor at self-care, but i'm trying

i'm not good a school.. i can't retain the information. i'm a terrible test taker

i'm really good at focusing when i need to. 

when my thought or project is derailed, it's very hard for me to change focus, and then get back to what i was doing. 

i've never really felt like i've fit in any specific place.. i've mostly made friends with other people who are "loners". i've never felt quite comfortable with people my own age, either people who are older or people who are younger. 

when i'm asked a question, i have to take time to answer because i take things so literally, and i think of all the different aspects of the topic/question. 

Chronic illness and intimacy

Something that is not talked about very often is physical intimacy, especially in the context of having issues with mental health and chronic illness. I’m not gonna get too detailed or anything like that, but it is definitely something that we struggle with. There are hormone in balance is, so bad sometimes that we have no sex drive, or very low libido. We can take supplements to help level out our hormones, and that helps with other physical issues as well, like with mine I take DHEA in a spray form under my tongue every night, and that has helped me with some skin issues, it has helped clear up breakouts on my face and chest, as well as being a little more fun and feisty with my husband, and I have a better sex drive now than I’ve had in a very long time. Not saying it’s super awesome, but at least it’s better than it used to be. But then another aspect is neurological issues, the hyper mobility issue, artistic issues (sensory overload etc.). If I’m not careful I can pop a hip out of joint, make my pubic bone shift out of place, even orgasm sometimes is isn’t a good thing because the muscle spasms actually create pain through the rectum, so sometimes I have to run downstairs when we’re done and pop some muscle relaxers in my mouth or I’m going to not be able to sleep because it hurts so bad.  I have extra pillows on the bed and also a makeshift spacer that I created out of a cut up pool noodle and a custom zone fleece pillow of sorts. Last night I kept shifting out of alignment so then my muscles would start spasming again but then I would relax and I would shift out of alignment again and then my muscles are spasming again so I had to move around in the bed quite a bit and prop myself up in different ways in order to ease the pain so I could sleep. I don’t think I fell asleep until 1:30 in the morning.

And of course this can be an issue in marriage because part of the fun of being married is being able to be intimate with someone in multiple ways. I didn’t used to have problems in that area, but one part of the after another and not knowing that my body was built this way, knowledge is very important. I guess in hindsight, it was a good thing I didn’t know until a couple years ago. Because there are a few things about the last 10 years of my life that I would’ve changed. And my family would not be where it is today if that were true. 

I’m very grateful I have a husband, a life partner, a lover, my best friend… Who is willing to work with me and learn about me and learn with me and each of us learning to adjust to different things, but always staying together.

do i know?

me to hubby: your wife is awesome
hubby: does she know that?
me: umm.. *stunned. *shock. i think so.

i've never really thought about it.
what do i think of myself?

do i think i'm awesome?

what do i think of myself?

"no parents are respected"- cognitive impairment

this is what my oldest daughter said to me after a blow-out at dinner.
i walked away because nobody was listening to me, and mealtime was a bust.. i gave up.

she came into the porch to try to apologize, and i brought up what i saw was happening, my point of view, saying that i didn't feel respected or listened to. i felt like i wasn't her mom, but like i was just a friend who stayed at home and cleaned up their crap. i didn't feel like a parent because nobody cared what i said. she said "no parents are respected".
and i said "so.. we shouldn't try to be different than that?"

and she left because she felt like her apology wasn't being heard. she gave up on me.
so i gave up on me.

(i did try to intervene in a sibling dispute, but she said "mom, siblings are going to have arguments. let us figure it out on our own." yes ma'am.)

i'm in the office now, with my water bottle.
my mind isn't helping me.. it's sitting there. doing nothing.

if i speak, i'll say things that i don't mean, or things that don't make sense, or things that aren't me.
my mind is too unpredictable right now.

just holding my little space in the universe.
hearing the cars and the bug noises outside the window.

eventually someone will do the dishes.