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?