He Believes Me

My husband this morning (Nov 1) was asking me about Jazmine's physical therapy appointment, today is her first one. He was asking if she can do sporty things, like swimming and gymnastics (because she has the same lovely genetic disorder I do). What's she's doing PT for, if it's for everyday life or if this is something she is doing in order to do sports? 

Something that I just kinda realized.. I mean i thought of it before, but something I had a lightbulb moment about, is my husband has no reason to doubt me. I have an open honest relationship with him and even though sometimes my thoughts or my words, don't come out right or don't make sense, he believes me. He has believed me every step of the way because he has NO reason to doubt ANYTHING i'm going through. 

Because of that, he believes me when i talk about my daughters and things that they need. So he believes that my best judgment for my kids is actually the best thing for my kids, because he has no reason to doubt anything I say or do. 

That's huge. 

Especially in the chronic illness community.. there are so many couples where one of them just can't handle or deal with or wrap their mind around what's happening with their significant other, and i'm noticing a lot of times, probably half the time, if not more, chronic illness couples will separate because the one that's not dealing with the chronic illness, the one that isn't living with it, just can't imagine it or believe it. 

I'm just finding myself very grateful that i'm with someone who believes everything that i'm saying, believes that my oldest daughter also has this condition, believes the fact that whatever I tell him is either truth or something i'm learning or along those lines. That's pretty awesome. 

This is also coming from the fact that i've had him come to quite a few doctor appointments with me, so he is able to see the interaction and hear what's being said between the dr's and myself. So I think it's been very helpful (for lack of a better word) for him to see and hear from medical professionals that actually hear me talk about thing that bother me and the tests that are ordered for me and actually seeing me do my tilt table test. Daily using my cane and getting dizzy and things like that. 

So he really has no reason not to believe anything i'm going through. And it's fantastic that he's one of those people that just wants to help me whenever he can or whenever he sees that i'm struggling. 

Another example of that would be.. we were at Greenfield Village, we went there for the day about a month ago and his mom and step dad came with us for the day.. that was a lot of fun. He brought my wheelchair and I brought my cane and he could tell about midday when i was walking to the bathroom, he could tell just watching the way i was walking, he's like "yup, she's gonna want the wheelchair when she comes back". 

And i think it's fantastic that he can see that, he can kind of feel me out, and his mom and step dad are able to see it and believe it, too. And my mom, i've emailed her a few things, i've had a bit of anxiety over that because, i mean, she's my mom. 

Everything that I went through growing up didn't seem abnormal because that's just always the way I was. So actually for her to say that those things were actually not normal, that those were abnormalities that she didn't know were abnormalities, and now I guess i'kind of teaching her about the way a body is supposed to work. I am kind of surprised, pleasantly surprised, by a couple emails that she and i have had back and forth, about different things that i'm finding out can help me, or just realizing that when certain things happen, i need to have a quite place, or i need.. something. And she actually has a file with my name on it at home, if something is emailed, she asks me to print it off so she can put it in her file. "I always want to know how i can help you". That was like kind of like one of those deep breaths that like.. ahhh.. finally.. big moment where it's like, "yay, someone else believes me." I think it's so great. I'm very blessed with that. 

they are watching

Kids really do watch what you do. 

Zoe, my youngest, mentioned watching me sing on the Smule Karaoke app and she asked me about it, she said "where'd you get that app?". 

So just a reminder.. our kids are watching. 

What are you showing them?

my mini advocate

Jazmine, my oldest daughter, told me something yesterday when we were shopping at walmart. I don't remember what it was that i noticed, but she said something about when people look at her family weird, or one of her friends.. If someone is looking at them like they're crazy or something, she'll stare them down. She'll actually look at them until they stop.

Apparently she does that with her sisters, she does that with her friends.. if anyone is looking at them like "you're crazy" or whatever, she'll actually stare back at them, kind of glare at them actually, until they look away.

She mentioned that she did that when we were at the Jeep festival thing and i was in the wheelchair with my neck brace on, and she said anytime someone would stare at me, she would stare back at them until they quit. And she said "mom i'm proud of you" and i'm like "ok!". This is.. it's kind of cool, i didn't know this about her.

I know she stands up for people and she's a very awesome person when it comes to being non-bully and she's actually created a club at one point in her school called "the anti-bully club".

That's very cool.

ADD Testing- neurology issues (updated 12-14-18)

I had a psychology appointment today and we did testing for ADD for me to rule it out, which we did.

I have neurological issues, thanks to my connective tissue disorder.
I was recommended to have neuropsych testing done to see if there are answers as to why my thoughts and words don't coincide at times. There is some type of neurological response that's either delayed or cut off.

Makes sense, especially since I have had many problems mentally with working a job, that's why I had to stop working. My brain is misfiring.

And over the last two weeks, i've noticed I have been having more muscle twitches and spasms, even though i'm still taking Magnesium (which has helped with that a lot).

My psychologist says I should bring up neuropsych testing to my neurologist (i have an appt coming up) and see if there's someone he can recommend for me to have this done.

There is something neurological that is progressively getting worse.

Also i've been having more tinnitus (ringing in the ears), and I had a completely different pitch today, it was a very low pitch just in the left ear.
Another thing i've noticed is that when I have migraines or headaches in general, i either have tinnitus or neck pain, and sometimes my inner ears actually start hurting.
I wonder if something called "demyelination" is happening.

A demyelinating disease is any disease of the nervous system in which the myelin sheath of neurons is damaged. This damage impairs the conduction of signals in the affected nerves.

........
Update. I had an appointment with my neurologist and he is saying everything is happening because of my anxiety. That if i just lower my anxiety and exercise, do yoga, etc, that most of my issues will work themselves out. He said everything I am diagnosed with all has to do with my mind. The mind is a very powerful thing, I get it. But don't flipping' gaslight me. I know what i'm talking about. He wouldn't talk about demyelination at all because he's stuck on this "anxiety" thing. He wouldn't listen to me about getting neuropsych testing. He thought it was odd that my psychologist wasn't able to do this. 

Even if it is all connected to something in my mind, there's something wrong with the connection from my brain to my body. And that's what I want to figure out. And he won't listen. 
I may just keep him around for my headaches and find someone else to help with my other neurological problems. (with him being my 3rd neurologist now, i'm getting burned out on this nerve thing, but if it is demyelination, and it's progressively getting worse, and he won't test for it.. then he's screwing me up even more.)

EDS, trying to poop. No joke. (If you don't want to read it, then don't)

It's been 4 days since I pooped last.

When you have huge canker sores so you can’t really eat fiber full foods for days (and you thought the canker sores came from eating tomatoes and tomato sauce because you had just a Little, but after a while you realize it’s not. That’s just your body hating itself), then when you can finally go poop, your body is trying to push it out but it hurts so bad you want to keep it in but you know that would make it even worse. When it’s trying to pass but the pain and the pressure is giving you waves of dizziness, and you feel like you might black out. And The hemorrhoids hurt. 

It’s finally over and you’re waddling because you can’t walk straight and you have to use the plunger. 
Tracking the type of waste that just came out of you for your gastro doctor because you have digestive issues (IBS, GERD, dysphagia and possible motility problems). Trying to not eat things that your body is sensitive to it because you know it’ll make it worse all around.

Back To the coffee and the massager… Time to work on getting rid of the migraine.
.......
FYI Peops, this is not a joke. 
This is real life. For MANY EDS'ers. Connective tissue disorder effects EVERYthing.

candle light

I like candles. I like them, I believe now. But I generally don’t burn them very often, I want to open them up, breathe in the scent, and then close them and put them up on a shelf because they look pretty. 

Candles are make with a wick in the center, aren’t we supposed to burn it? The center of what they are is made to be lit on fire and spread them out the whole area.

I feel like this is what we do with our God given passions. 
He Put something in the core of who we are that is meant to be shared with everyone around us, and a lot of times I feel like we just keep it to ourselves and not let our fire be lit. We smother it. We keep it away from the flame. 

Imagine what could be possible if we let that far of us and let that amazing permeate through our lives and people around us.

You will also notice that as a candle burning and as the wax melts, overtime the wax disappears. that part of the candles, the solid part, disappears and spreads through its whole atmosphere. And what is left is light and space. The heaviness is gone. If you pick up the container once the wax is Melted, it’s so much lighter. Imagine how much less heavy our lives would be if we shared our fire with our world.

Sure is nice to smell that mocha candle :-)

let's talk about God

who is He to you? 

do you believe in Him? 

have you been a believer for a while? 

or is this faith thing something you're just learning about? 

God, to me, is someone I can always reach out to. 

He gives me strength. 

He's into the details of life. 

It's the little things that all piece together where you can really see Him working. 

He's like a father. 

Not in the human sense at all, but like that dad you've always wanted. That dad that would wrap their arms around you, hold you and say "everything's going to be ok".

To me, God is the artist and the orchestrator. 

He paints so many beautiful things and molds all their tiny pieces into masterpieces. 

He shows up at the times where you may not even need him.. like getting out of my driveway on the way to the laundromat.. the road was clear. That's rare on my road. 

Or the light turns green right when you get to it, and He KNOWS it's been a hard day, or you just need to catch a break. 

Or the cat jumps on your lap when you could really use a hug and just starts purring. 

Or my daughter tells me a story about how she got to stand up for someone at school today.

Or how she hears bad words and knows that those words aren't something a person who believes in God should say. 

These are all ways I see God. 

I hear him tell me sometimes to send a text to a certain person. Or every now and then, i'll feel a nudge to go somewhere or do something. 

And sometimes, it really sounds or feels like something ridiculous. 

I was doing a little bit of thrift shopping the other day, and for some reason I kept feeling like i needed to go to the salvation army, but i wanted to go to blessings and more, and i only had a $10 limit. so i went to the store i wanted to go to.. and my total only came up to $6. I left the parking lot and still felt like i needed to go to the salvation army. So I did. 

Found out a couple antique stores had gone out of business and had donated a lot of it. 

I found a piece of Dutch Blue Delft! for $1.49! I had to trade in another vase I had purchased because there was NO way i was leaving that there. 

And then when I got home, i had a feeling that i needed to show my mom. So i snapped a picture and sent it to her. I ended up telling her where i had gotten it. And felt like i should give it to her. (little bit of back story, she lost a LOT in a house fire 7 years ago). She was on cloud 9. 

It's the little things. 

To me.. that's where I see Him the most. 

I think the hardest part is to actually do what he says to do. Take action, even if it sounds ridiculous. 

....

Where do you see God in your life? 

How do you hear him?