Migraine in Colorado

I was at Beth's house and Friday afternoon, I started getting a cluster migraine. In the morning, I laid on her living room couch.
She gave me a neck massage, a lot of tension in my neck. It was hurting to bad I was silently bawling. My neck was hurting pretty bad. My jaw was hurting.
The right side of my face is where most of the migraine pain was happening, my eyes are very sensitive to light right now.
If I just lay here and figure out what my body is feeling.. the left side of my body, my head, my neck, my arm. The right side of my body has the migraine pain and the left side of my head feels like a pulsing moving pain, like my body is running, but i'm just laying here.

I also feel really nauseous and hungry at the same time, like i want to take my Zofran, but at the same time i'm wondering if i can swallow it and if it will stay down.
I wonder if eating something, or even just drinking a smoothie would help.

...

My BFF made us smoothies. <3
Best BFF ever.

Gastro study update

So i just got a call from Dr. Deep's office, he's the one that did the gastro study. He found the ulcers and I do have gastritis, it is a chronic condition. He recommends that I do take something like prilosec to lower the acidity in my stomach/system.

So he's referring me to a gastroenterologist (which I see next Tuesday!) because this is a chronic condition. I will always have this. I have talked to my PCP about it, and we tried Prilosec and it didn't seem to help. 

And my doc said having chronic gastritis is most likely because of the fact that I have EDS.

So that's where we go from here! 

repercussions of a cheat day

The way i feel today is what I get for having a cheat day on Black Friday. (keep in mind, i plan cheat days, so i know that whatever i have to eat or whatever i do on that day, i know how i'm going to feel the next few days to a week. I knew this was coming.)

i have had brain fog for the last day and a half, almost two days. Today I have inflammation popping up all over my body, which the result of sugar and gluten. The brain fog is the result of sugar, and i have been constipated, really hard bowel movements, ever since Friday. like we're talking painful.

I had serious gas on friday and saturday as a result of dairy.

Sometimes i'll be like "is it worth it?" and i'll have a cheat day. And the next few days i'll know what's coming.
I knew the inflammation, constipation and the gas was coming, i totally forgot about the brain fog issue, and there are other body pains that i'm dealing with right now that are not a result of any of those.

My life with EDS ;)

POTS spell and headache

MY heart rate just jumped from 61 bpm to 121 bpm and my tinnitus got louder, just from being on the floor.. i was looking for the back on an earring. I was probably down there for 5 minutes, good resting heart rate. And then I went to sit up.. i didn't even stand up. I went from being on the floor to sitting up, and i doubled my heart rate and got dizzy. 

I started getting a minor headache. 

I have a feeling some of my headaches, or many of my headaches are not neurological, but have to do with blood flow. I think it's a good idea for me to get an MRI of my neck. My neurologist and my rheumatologist both want to see an MRI of my neck. 

I have a feeling the instability in my neck, the fact that the Xray showed that it was straight and partially reversed, because of the instability in my body, has a lot to do with my headaches. 

my diet and way of life

I'm finding through trial and error with different foods, cutting out certain things, eating certain things.. i'm finding that just eating veggies and fruits isn't giving me enough. I have been making some gluten free breads, so that has been helpful, but i've also cut back on my beef, I barely eat beef anymore. But eggs are a big part of my diet, i need to keep those. I'm also finding that when i have lean meats along with my veggies, that is also something that helps my body feel good. When I don't eat any meats, I feel like i'm lacking and sluggish.

Fish, i have to keep fish in my diet. There are actually some fruits and vegetables that my body doesn't respond well to, they hurt me. I'm not allowed to eat acidy fruits and vegetables, which is more than you would think. I can't have pineapple, oranges, grapefruit, tomatoes, some coffees. And beans i'm finding out that reason i don't like beans is the texture i can't get past.. the starchiness of the inside and the skin just don't agree with me. They make me gag. They also make me bloated and super painful.

So that's really cutting back a lot of options for me, so i'm finding it basically imperative that i have the lean meats in my diet. Like even veggie burgers, I can't eat because of the soy. I can't have soy either because it gives me mood swings, along with the already having hormone issues. 

I'm not going to be able to have a vegan diet, no matter how much I want to save the animals. I need some of that. 

So i've been checking labels and researching companies to see how they treat their animals. It has definitely made me more aware of what I want and don't want to be part of my life, included in my diet. 

As much as i love animals, and i known i've seen videos here and there throughout my life about how terrible they are treated in the food industry. And now with my best friend trying to open my eyes more and educate me, telling me and showing me what's going on. I am finding that a vegan diet is not going to be something I can do. But I cutting back on meat. 

So I know that even though i'm not going to be able to cut out all meats, i'm able to cut back and save some lives. 

I will be having eggs and butter. 

I am actually unable to bacon and sausage for the most part, that also sets off my headaches. 

But i will be having fish and chicken and turkey and eggs. 

Also note, i'm cutting back on condiments as well. I'm using more dressings, like avocado oil dressing with garlic seasoning.. stuff like that. 

I don't use most cheeses anymore, I have almond milk now. When I do use butter, it's not a lot. I'm also making my own hummus out of chickpeas and my daughters love my kale chips (homemade). 

Thankful for changes that I can make to help my body feel better and knowing that i'm also making a difference, however small, in some animals lives.

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?

my matryoshka doll

yay in found her!

I got her quite a few years back, i've always wanted one.
so when i had a little extra money to myself, i made it happen. i went on eBay, i looked them around the amount of money i had.. and found her.

she's beautiful.

this doll taught me something this morning. 

when i told my BFF that i had found her, because I thought I had lost her when we moved over 3 years ago, she said "i remember her". 

I responded "she has a small crack and a little warping, but she's still perfect."

and Bam. 

that made me think of our self image. 

how do i view myself VS other people's view of me. 

this makes me think of a couple days ago when i had a migraine and I posted about a migraine day using my instagram, and my future cousin-in-law commented "you're beautiful!". 

I was taken aback. Huh?

How am i beautiful when my face clearly shows that i'm exhausted and unkempt?

her view of me and my view of myself were completely opposite. 

how do you view yourself? 

remember the Matryoshka doll.

morning inspiration

Because i live with multiple chronic illnesses, mental illness.. i'm a mother of three, a homemaker and a wife.. For me to get out of bed every morning i have to have a reason. Otherwise I will literally just want to lay there. 

This morning I paid back down for a couple hours (after I got the kids off to school and Brian off to work), only meant to lay down for an hour, I had a bunch of crazy dreams that exacerbated my pain, but also made me feel more stable. So I didn't want to wake up. I felt better in my dream than in real life. 

I have a speech therapy appointment at 10:45, it's important that I have that appointment because that inspires me to get out of bed. It inspires me to do something, to eat and make my coffee or do the dishes. Otherwise I feel like i'm failing myself. 

If I don't have something to look forward to, I could literally sit on the couch. 

But I do have thing that inspire me to move. 

My kids need their mom to be an role model.

I need to make a meal. 

The cats need food and their litter cleaned out. 

The dishes need to be washed or we'll have fruit fly problems. 

I need to vacuum because clean things always make you feel better. 

I need to make sure I write a check before the bill is due so it's not late. 

If I don't take care of myself, I can't take as good care of my kids and my house.. so I make myself shower (yes, this has become a chore. i actually have to sit down in a chair now to shave my legs and clip my toenails because my hip flexors and the hip joint isn't strong enough, and the movement hurts). 

What inspires you to do life? 

receipts

AHHH!!!

ok, now that i got that out of my system..
gotta get myself situated with my cup of coffee, pile of receipts and cozy robe so i can concentrate. it's my job to go through quicken, itemize the receipts, check them off and throw them out. mentally, i can only handle it for an hour, tops.

*whew.
*sip.

honestly, it's actually something I enjoy ;)
it makes me feel helpful and accomplished. and i like to do paperwork.

Finding out who you really are- me

Have you ever really just looked inside your own mind and thought, "who is this person? who am I?"

What do i like?
What are my favorites?
What do i NOT like?

For the most part, my whole life i've been pretty easy to please.
I mean i don't like beets. I really don't like beets, i've never liked beets, even when my mom put them on my plate and said "you can't get up until you eat these." LOL
Oh by the way, they cannot be fixed with ranch dressing. I tried.

But yeah, just things i'm finding out about myself.
I am still a cat lover, i will always be a cat lover. I love coffee. I try not to drink it all the time, I try to drink enough water, which, another thing I know about myself, I suck at drinking water. Still workin' on that.

Other things I know about myself.
I am loyal to a fault.
I know a lot of people but I don't have as many friends.
I like to have close friends, people that I can actually talk to and have a deep conversation with. I'm not much for small talk. I do it when I have to, but it's not really my forte.
I prefer to have meaningful conversations.
Instead of "hi, how are you today?" "oh i'm good". No, you're really not today. Tell me how you actually are. I don't want you to give me a canned answer, I want to have a real answer, that's why I ask "how are you?".

Let's see.. what else?
I love purple. When I was younger I always liked blue.
I don't like skirts above my knees because i'm self-conscious about my legs.
I have small hips and i'm finally ok with that. I used to always want more hip because my body is very "slender".. I've always been shaped like a bean pole. I've never really had much curve. But that's ok, because not everybody needs to be curvy!
I am happy with my bra size. My husband wouldn't necessarily agree with that, but I like my size.

I love fingernail polish.
And not for the fact that it's fingernail polish, I don't have to like buy all the fingernail polish.
Some people like to color their hair, some people like to wear makeup because it makes them feel pretty.
I am like that about nail polish. I don't need every color, I just need the right shades. And i'm basically at a point in my collection to where for 1, i'm going to stop watching because it just feels like another thing to do and i don't want to take away from the enjoyment of the polish itself. So i'm gonna stop swatching.

Eyes

I think the thing I love most about people, physically, is their eyes. You can see SO much in someone's eyes.

You can see feeling, you can see stories, you can see emotion.

There's a whole chasm of past and just so much intensity.
And i love to hear those stories, i love hear what people feel and what they need.
And i love to listen and i love to research.. and i like to know.

This might be why I have a hard time looking at people in the eye when i talk to them.
As soon as i do, i'm overwhelmed with emotion and i feel some type of connection.
It's very intense for me.

my new old house.. blessings in disguise

I love our house. 

We moved in just over 3 years ago. 

It was built in the 1930's.. so their is amazing wood trim, a winding staircase, lots of little nooks and crannies filled with shelves and hanging bars and every square inch is finished off with insulation and cedar paneling and industrial piping. 

I've always adored twisting staircases.. we got one. 

I've always adored alcoves.. we got TWO! One in the living room, one in our bedroom (that is mine, by the way LOL). 

I've always adored slanted ceilings.. we have little pieces of this all over. :) 

I've always loved having a yard.. not too much to take care of, but big enough to be able to go outside and do stuff. We have a full acre. :) 

The woodwork in the house is so simple but it's perfectly stable, strong, and elegant. Not hard to clean, not overwhelming because it's small enough, and not hard to get around because it's big enough. 

The landscaping is pretty bare.. which is actually wonderful. We can really do whatever we want with it! 

There's a forest across the field, there's wildlife that are protected by the fact that we live in a main highway and other homes are sporadically placed so you can't hunt, there are trees all over our property. 

And we can barely hear the traffic on the busy road in front of us because of the old windows and the insulation and the solid build.

We still have windows with weights in the sides! BUT they've also been upgraded to a double pane.. removable storm window option with screen.

The reason I'm writing about this is because, as you know, I have a chronic debilitating illness. A few of them. 

This home that God led us to is perfect.. 

The winding staircase? Flanked on both sides by a wall, and a banister upstairs, and 2 ledges. On my bad days, I can still walk up the stairs with the help of these features. (So glad). 

In our small bathroom, the window is right near the toilet, perfect placement to assist me if I can't stand up with assistance. We have a small vanity with a large medicine cabinet with a triple mirror, and the sink isn't too high. We only have a standup shower, which is actually great because if i was able to lay in a tub or sit, I feel some days like I wouldn't be able to get back up without help (and i like to shower when nobody is home so it's quiet and uninterrupted). 

We have a few neighbors.. just enough neighbors to have some local relationships and not be overwhelmed or feel a sense of obligation. We are all their to help each other, but we don't interfere with each other lives, either. 

We are just outside the city limit, so we have country in the back and city less than 5 minutes down the road. The bus still comes to get our girls because we are still in the school district. 

Almost everything we need on a daily basis is within a 15 minute radius. 

We have been truly blessed. So grateful.

Body Wraps

Looking at me right now you would have no idea I am wearing not one, not two but seven different body wraps right now. This helps me feel put together, or normal. A set of toe separators, a set of custom orthotics, A set of ankle wraps, a set of knee wraps, my SI belt, body shaper shorts, and a double shoulder wrap. Not to mention the rings/finger splints/hand wraps that I will be switching in and out of all day.

You also wouldn’t know that I take seven pills with breakfast (2 are chewable, 1 more in the spring summer and fall for allergies), two with dinner, two before bed and a spray under my tongue.
All of this to help me thrive and get me through each day. (those are just my daily meds, I also have a couple that I take as needed. 2 for migraines, 1 for pain and an inhaler)
Also oils so I don’t have to take anymore meds than needed. 

I didn’t know about any of these things that could help me up until a couple years ago. Would have been nice to know when I was younger, I might not have had to quit running track or keep falling out of the same tree at the same spot, or keep running into things as my bike adding to my multiple bumps bruises and scars. 

Wouldn’t have known I was hyper extending myself all these years, leading to chronic joint pain.

There’s also makes me super glad that I have found my answer, because my oldest daughter is just like me in this way. Now I can help her as she’s growing up to strengthen her self and be more careful so she can still be active and hopefully not have her body breakdown like mine is right now.