figuring out this interesting body of mine

so now that i have two cocktails of medications per day.. i'm figuring out what is helping what. so it makes sense to me why i'm taking each one.

in the morning i take-

protonix for GERD

vitamin D3 5000 UI for vitamin D deficiency (part of my tiredness and lack of energy)

fish oil for history of heart issues in the family, and my own abnormal heart beat, POTS problem

multivitamin because i'm vitamin deficient, can never get enough (chewable because the pill form is too big to swallow- dysphagia)

allegra for allergies (horses, penicillium mold) and flonase (excess drainage and abnormal amounts of mucous)

Zoloft 100 mg for anxiety- this only treats some of my anxiety, since my body also makes too much adrenaline. But it does help.

miralax in my water to help with my IBS once a day

dinner i take magnesium citrate to help with constipation, muscle spasms and twitching (nerve helper)

after dinner i have a night time cocktail- 

corgard to help prevent headaches, including chronic migraines

requip for my restless leg syndrome, help calm my nerves

pamelor as a mild antidepressant which also makes me drowsy

I have 800 mg Ibuprofen for pain, excedrin migraine when i need it, maxalt as a back up for bad migraines

My inhaler in case i get out of breath or tightening/pain in my chest. It works about half the time, because of my POTS, it doesn't always have to do with my lungs. Sometimes it's really just my autonomic system going haywire. 

DHEA spray to level out my testosterone and estrogen, also helps with libido, also helps clear up my acne and helps it heal better. 

Zofran for days when the nausea is just too much.

.........

That's just the meds that help make my body feel mostly "normal", whatever that means. 

I also have a much stricter diet, because of all the foods that i'm sensitive to. 

Gluten free- ads to IBS (constipation), keratosis polaris and inflammation

Dairy free- ads to IBS (diarrhea, bloating, gas) and breakouts

Soy free- messes with my hormones, mood fluctuations

as Acid free as possible- inflames my bladder and GERD problems. (no acid fruits or veggies, dark coffee only)

lower fat foods- cutting back on beef, basically no pork/bacon, have to eat lean meats (turkey, chicken) and eggs since i don't get the benefit of some fruits and veggies and can't eat beans/legumes. too much fat messes with my sphincter, creating more GERD problems. 

as Sugar free as possible- ads to inflammation and brain fog.

........

finding out I have EDS has actually really helped me, so now i know that things i thought were normal were really things that were abnormal, and i've been able to adapt to a new way of thinking, a new way of eating, a new way of living. 

not working outside the home anymore, being able to keep the house clean for my family and being here more for them. 

so much more enriching and mindful.

I now have an awesome PCP, rheumatologist, neurologist, gastroenterologist, urologist, cardiologist, and dentist. ;) For the most part, I love my medical team!

fad diets vs people who have to eat that way

I was attending a catered meal for ladies at church and we somehow got on the topic of food. I think maybe my sister mentioned my plate, which only had a couple things on it, no bread, no dessert, no punch, no croutons, no breaded chicken.. and the topic of gluten free came up.
(unfortunately, ranch dressing has dairy AND gluten in it, but not enough to bother me too much. it did give me gas, which i swallowed a gas pill and i don't think it helped)

The girls she brought with her said "oh you're gluten free right now? I tried that once, that was too hard, I couldn't do it?"

It made me wonder about the difference between people who use things like "gluten free" and "detox" and "no sugar" diets as fads.

Then there are the people like me who have to eat that way every day, who don't get a choice because if we eat the wrong thing, our bodies pay for it with pain.. bloating, inflammation, diarrhea or conspitation, sometimes migraines or chest pain.

...................
It's definitely been a journey to change so much about how I grocery shop and how I cook, figuring out what hurts me and what doesn't.

Now when I go out to eat with someone, I just have to be a lucky picky in what I order.

Went to 5 Guys Burgers and Fries with my husband earlier this week, and I ordered a small bacon burger with no cheese and no bun. They asked if it was preference or allergy, i said "allergy" the first time ever. That felt strange but cool. I was in control and they respected that. So i got lettuce wrap. And it was delicious.

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.

um.. video

me and my youngest daughter.. random.. spontaneous.. craziness

changing pediatrics

as you may know by now, we've been having some issues with our PEDS lately, and have been feeling the need to change offices after almost 13 years being with the same one.

well, i made a (second) call to the new Peds office that was recommended to use today, and i'm pretty happy with the fact that their taking new patients, they take our insurance, they are only about 5 minutes away from us, and it's as easy as just filling out a form so they can get the medical records faxed over :).

yay for answered prayer and easy things!

now to remember to do it. lol.
putting it on my calendar for tomorrow!

hard time today- Saturday POTS and EDS combo.

i'm going to write out a message i had to send to my husband on saturday. he was out of town filming a wedding and i didn't know who to call to help me. 

my oldest daughter is something else.. she wants to help me so bad. i have such a hard time asking her to do that though, she's still a kid at 12.5, and i (maybe selfishly) don't want her to have to help her ailing mother. that doesn't paint a good picture in my mind, i don't want her to remember having to do that. 

ironically, when i asked her the next day what her favorite parts of girls day was, one of the things she said was "helping you when you were hurting". this girl and her heart.. am i taking that chance away from her to help me? is this something that she could possibly really WANT to do? 

my body feels like it's shaking all over inside, my left knee feels like it's going to collapse, like it's barely holding me up. this morning, when i was at my moms house, me and the girls were having coffee and i snapped at Jazmine for hanging on me and touching me. so my anxiety is part of it, my POTS syndrome is part of it, all of this is created by the fact that my connective tissues don't work. because i was born with a connective tissue disorder, i basically feel like my left hip is going to pop out of socket, it doesn't feel like it's going to stay underneath me. i'm glad I have a cane. 

"i'm having a hard time with my POTS syndrome today.. just sitting on the couch, i felt like my body was tumbling upside down, just sitting still. and i also felt like, like when i stand up and get light-headed, i felt like that just sitting down. just now we had a little bit of like a snack lunch, and Jazmine wanted to do something herself, and I wouldn't let her. i took over because i'm having a harder time letting people do things for themselves because i want to feel like i'm in charge, like i can do stuff. but i can't. 

and i'm having a really hard time with that. so.. Alivia went up front to play her clarinet, Zoe is playing her.. recorder? um, Jazmine and I are on the bed, she's taking care of me. there are parts of my body that are hurting *sniff, I just can't think clearly. Jazmine's here with me, she might say something *sniff.

we're gonna call your mom and see if she can come over, just to be with us today, because I don't want to put this stuff on Jazmine to help me with, no matter how much she wants to. i'm just having a hard time and i can't call you, you're working. 

but i really agree with the lady at GIFT gathering *sniff, that you need to have a support system, too. especially at times like this when you're not going to be home, we need to have other people to call to help.

Jazmine: I love you daddy."

anxiety and medication

so i'm finally at a point in my life where my anxiety is effecting my everyday life.
i'm starting to realize that with my sickness, the more stress i have, and the more problems my body has, the worse my anxiety will be.

so I'm at a point to where i'm ok with the fact that i need meds to help me.

my dr and I decided that i would try Zoloft, starting at 25 mg.
I am on 50 mg now and it seems to be ok.

i was actually able to drive on the highway, and even though, i was close to having a panic attack, i held myself together, i didn't freak out, i didn't start crying, i kept myself focused, i got through it.

today at my neurologist appt, all the questions he asked me, i didn't get all tensed up like i normally would (i'm generally terrible at forming thoughts and opinions and answers on the spot). i was able to think of the answers and say them clearly, and even when he did the occipital nerve block injections today, which i wasn't expecting (for my migraines), i did have a little bit of an anxiety problem after i thought he was only going to do one set of shots.. apparently, the first set of needles was just to put in the numbing agent and the second set was to put in the nerve block. i did get a little worked up the first set because it wasn't what i was expecting. we did 7 shots and i was kind of like "holy crap" and kind of freaked me out a bit.

but i'm getting better at driving down to Toledo myself, finding ways around highways (back roads that are still quick) myself.


so using those two examples.. even though there was a stigma around using medication for anxiety for me personally, i'm learning to be ok with it and it's helping me.

the perfect underwear drawer

ok.. 

so ladies.. 

am i right, or am i right? 

it is SO HARD, like YEARS in the making, to finally created the perfect underwear drawer. 

but i DID IT!

I know this sounds silly and ridiculous, but you get it! (*I see you nodding)

so, first, finding the right shape of undies, whether you like bikini or hi-cut or thong or full-coverage.. what have you. 

then figuring out what type of material you like, or what you have to wear with certain outfits. 

Why are her legs so long?

and then there are bras.. omgosh. NOOOOO

bras suck. 

it's way too dang hard to find ones that either don't poke you with a wire, don't (slowly, over the course of the day) give you "underboob" or ride up in the back.. 

there are way too many scenarios here.. i'm only gonna touch on those couple, but seriously.. 

i've finally found the perfect combination for me! 

and then they start to fall apart *gasp. *groan. whhhyyyyyyy???

comment with your bra issues down below \/ !! 

if you like I can even tell you which ones I've figured out to be the best for me!

i've shopped everywhere, and tried so many different brands and prices and types and sizes and fabrics and .. stopping. too much. 

let's not forget socks! or knee highs! or tights! or footies! or.. 

gees oh peets. 

forget it. 

either way.. i'm FINALLY happy with my underwear drawer. 

*high 5ing myself. 

something from my weekly women's bible study right now

something I got out of this last week of the women's bible study my mom invited me to at her church.. 

"10-16-18

Learn to listen to Him, follow what He says to do, no matter what struggle is may put us through."

These were my own words. 

No, i didn't rhyme it on purpose. (i actually wrote purple, and then changed it to purpose). 

But I think I might print that and put it on our office wall.. or at least somewhere in the house. Maybe multiple places. 

This is a big deal. 

We need to learn to listen to what God is telling us, through whatever avenue He decides to speak. 

And then actually follow through and do what He is telling us, not matter how much we struggle with it, or what we may have to go through to get it done. (discomfort, financial strain, "what will people think of me?", etc). 

!!!!!!!!!!

This was inspired by Revelation chapters 2 and 3. 

me not working- just a little blip

so.. as some of you know, i'm officially (struggling to think of the word right now.. brain isn't connecting).. retired from working outside my home. 

(and that right there /\ is one main reason. my brain isn't functioning like it should.) 

(and now i feel like my head is fuzzy. my neck still hurts. i'm struggling to focus on my task.)

(referring to my notes again- must have notes for everything or i'll forget.)

(my body feels so heavy.. wow.. all i did just now was take a shower [didn't even shave, my joints hurt too much and i don't have the energy] and put on some normal clothes instead of my PJs, grabbed my coffee and sat down)

another reason I'm not working outside the home anymore.. too many things my body is telling me I can't do anymore. 

things take up so much of my energy now, and i don't have the strength to do things that used to be easy.

besides my physical body not being able to do it anymore, my family needs to be a family. 

it's not ok when i can't be at home the same time my husband is. 

it's not ok when he texts me at work saying "what do i feed them?" because i'm the one who knows what meals we have in the house. 

it's not ok when my kids can't say goodnight to my face.

it's not ok when my house needs to be cleaned but nobody has the time to do it. 

it's not ok that my kids have to go to a place after school where they don't like to go, that doesn't promote the same beliefs that i'm trying to instill in them, and then i ask them where they heard something or get a call because they're behaving badly.. and this could have been prevented. 

it's not ok to leave our pets all day behind a door, even though I know they have what they need, but nobody ever has time to love on them- that's a crappy life. 

...

confirmation. when we are out in the backyard on a beautiful crisp fall day, doing some clean up with trees and leaves, and a friend over to roast marshmallows on the fire, and my husband says "having you home on saturdays is so much more worth it than you getting paid to work and spend time away from us."

agreed, babe. 

agreed. 

the church

did you know.. what the church is?

the church is not a building. 

this is mis-information. 

yes, we meet in a building, generally once a week. sometimes more. 

but the church is actually the body of believers. 

we could have "church" in our own homes. 

when we gather together as a group of believers, we are the church. 

buildings don't matter when Christ is the center of your group. 

when we gather together to share and praise Him, we "have church". 

we have a community of believers.

shout out to my church family. :) 

raise your hand if you are part of the church!

my new normal

It's scary and strange to feel (on a day like today.. migraine and POTS filled) that i feel ok with this.
I'm actually more ok with myself when i have problems with my chronic illnesses than when i feel "good".

I've been seeing dr's and taking measures to improve my quality of life, because with the health conditions and mental conditions I have, that's what my life is about. Making things easier to deal with and minimizing their effects on me day to day.

The thing that makes me uncomfortable, ironically, is when I don't deal with these problems. When the medicals and the therapies are working well, and I feel energized. I feel rested. I feel like I can clean the whole house. I feel like i can go for a 5 mile walk. I feel like I can cook all day, have an amazing meal on the table that I know everyone in my family will love, and still have the mental and physical capacity to help my husband doing office work.

It's day where I feel like I normal human being that make me feel unlike myself.

...
This is my new "chronic illness" normal.

And I feel, honestly, more comfortable and more "me" when my body isn't working right. When I have to wear a brace or stop doing dishes after lunch because my hands hurt. When I have to take a breather from my kids coming home from school because my anxiety and cognitive function failure kicks into high gear.

...
This is my new "i'm ok".

It sounds so strange.
But it sounds like me.

...
Today I have a migraine.
I've been trying to get rid of it since it started 5 hours ago. But at the same time, if it goes away, and i feel good, it will be weird.
If it goes away, and I can actually do what I was planning to today (pick up a pizza, pick up my kids from school, go to conferences in a crowded middle school, and then zip over to the church to drop two of them off for Awana, and possibly help my husband in the office for a bit).. it would feel weird.

Do I want to feel better?
This is the struggle for all chronic illness/zebra warriors. If we feel better, we don't feel normal. This is my normal. And i'm more and more ok with that. I know how to deal with my new normal.

my want to help other people- light bulb moment

So for my whole life, i've always been a helper.

I've always loved helping other people.

To get right to the point, i'm struggling right now because the last few years of my life i've had to lean on other people to help me.. totally opposite side of what i'm used to.

And now that i'm not working at the Centre, and i'm not VIP at the desk, i'm feeling very out of place. I've been considering the notion that it's time for me to step down from being there.
Like only be a customer and not have any weight on me at all with the responsibility of the facility.

But me being a helper, i struggle with this, especially since I do have a need to be confident in myself, and with my body and my mind not working the way they should, it's getting harder and harder for me to accept that and still be confident in my own decisions and feel like I still bring something to the table.

....
Recently I've been becoming more of an advocate for my daughters' health because I, as a parent, a mother, a zebra, need to be that for them.

I've had my oldest be evaluated by a psychologist.. she is officially ADHD and GAD and recommended to see a counselor (also recommended she get a blood workup and an EKG to be safe). She's also gone to a rheumatologist because her body acts a lot like mine, and she has been diagnosed with JHS and finally getting PT and a Urology appt.
....

I kicked around the idea of it being my anxiety and my mental health that were trying to keep me from my VIP position at the Centre, making me a recluse.

But my lightbulb moment today had to do with the fact that I'm a helper by nature.
And that I've been taking my role as a mother as part of my household that takes control my family's health and well-being.

This is my help calling.
Right now.. my help calling has to do with my family.
And that being said.. I believe that I will be stepping away from the Centre to take control of my own health and to lead my family into a healthier future.. mind, body and soul.

....
A new chapter in my life is beginning.

so many things have happened..

i'm not going to go into everything that's happened in the past 6 months.
let's just say i've been so busy with life.. every now and then i think of my blog, and then i do the next thing on my calendar.

kids have been home from school, in between my part time job, my dr appointments, physical therapy, speech therapy, occupational therapy..

i actually got two of my kids in to see a geneticist about possible EDS! wow.. that was touched on in the last blog post, i would recommend reading it if you're interested in how that came about.

long story short..

i have multiple diagnosis now.. EDS being one of them!
I'M A ZEBRA!
It's on my chart.. omgosh, it's on my chart!

I also have more issues that it has been causing, finding ways to live with those new findings and help my quality of life be better.

my oldest daughter is EDS, but she doesn't have enough wrong with her yet to actually do blood work to rule things out and diagnose it. so she most likely will have to wait until she's into high school, when things start getting worse with her body, to actually put the EDS label on it. (kind of scary actually.)
my middle child does NOT have EDS.

......
Also i find got to take a trip to Colorado to spend time with my BFF! and we got matching tattoos! we took our finger prints and overlapped them to make a heart. :)
branded for life. :)

.....
I also have made a life change in my job..
I am not working anymore.
My husband and I have decided that with all the struggles that i'm facing, and the lack of care of our family and our home, I'm "retiring". I've filed for disability.. and i'm able to keep up with cleaning the house and making meals and being there for the kids and helping my husband in his office some days.

Because of all the wonderful doctors i've met and have been able to tell me whats going on under my skin, I have a generous size morning "cocktail" now, and a smaller "cocktail" to take before bed.
I never thought i'd be ok with taking medications, but they are helping me.
I am learning to think of these things (medications, braces, cane, PT exercises, walker, wheelchair) as tools. And that my life tools are going to look different than other people's life tools.

ANYWHO.. thanks for taking a minute to catch up with me. :) I look forward to being on here more often.

wow- genetics referals, pediatricians, and more. WARNING long

so the back story.. i've been emailing and talking on the phone back and forth between Toledo hospital and Cleveland University Hospital, trying to find someone to see me for a clinical evaluation for the possibility of EDS (Ehlers Danlos Syndrome).

* I've been finding that there are a lot of things physically, mentally, psychologically about my family (immediate, extended, etc) that are not normal and seemed to be passed on from generation to generation. THEREFORE being genetic, that need to be addressed. *

So I finally got to talk to someone at the Toledo Hospital about seeing a genetic counselor, and she knew "about" EDS, but didn't know specifics because she herself isn't in genetic medicine, but she was trying to help me find someone who DOES know these things so we can get the ball rolling. She decided to help me go a different route and get my KIDS (the two that show symptoms of EDS) into the genetics lab for clinical evaluation. OMGOSH smart lady. :) 

So she put her cell phone down (that's how I was talking to her) because she didn't know how to put it on hold ;) and made a phone call that I could hear a lot of and they were asking her questions as well.. she confirmed information that I had given her to this other person, and was asked things that I hadn't brought up yet about the possibility of cEDS (classical EDS- more skin involvement) which I don't have as much of, so I said no. 

Basically this whole conversation/chain of events helped me totally validate everything I've been looking to accomplish with my family's health. 

Unfortunately they can't see adults right now, they don't have a large enough medical staff for that, they used to and then some of the dr's left. 

But the lady who does the scheduling is back this week and the woman I talked to sent the scheduler an email explaining the situation. She also said that normally they only schedule 1 sibling at a time, but because of our situation and I think our location, she wants to schedule BOTH of my girls the same day. 

She said if I could get a referral from their dr, that would be great. The more paper trail, the better. Especially in situations like this. 

.....

On to today.. 

My two younger daughters had their physicals today (I had written and note prior to this appt on one of their accounts that I had a suspicion of EDS for them) and the physicals went really well. The nurse at this appt saw that there was a pending diagnosis on our account. She was great with that. 

The youngest spoke up about having more problems with her acid reflux (I asked her about her tummy pains, and the dr looked at me and said "she just mentioned her reflux", and my brain said "um thanks, but i'm talking about her tummy pain she's had for weeks now, that Tums hasn't helped, and Pepto Bismol has a little, maybe she's having problems with constipation. she doesn't poop very often"). My other daughter he did a hyper mobility test on her hands and legs, and I brought up my concern about her also being an EDS candidate. (We have discussed this before with my oldest daughter, he knew I didn't have a diagnosis yet. At that point, I was just glad he'd heard of it and that he knew it was autosomal dominant.) 

Today he asked me who in the family has a diagnosis of this.. nobody does yet. He looked shocked and said something about "I thought you had a diagnosis". Umm.. no? We've been over this. He asked who else in the family shows signs of this.. my sister, her kids, my dad, all the men on his side of the family.. myself and two of my daughters. 

He asked about what things I've noticed in myself and my daughters.. I rambled off a few of them, because the notebook I was going to bring with me, I left at home. (darn brain!) 

He said "those symptoms don't necessarily point to EDS. I can give you the referral but for things like PT if she keeps hurting her ankle, those are things I can refer her for." After he had asked me about why I would want a referral to genetics, what am I looking for as an outcome of that? (being able to help them figure out how to live their lives better, referrals for joint pain, referrals for PT, knowing that we aren't crazy). Even though he knows and he SAID "there's nothing we can do to reverse or alleviate this condition". Fine.. but I want to know how I can help them and if I know what i'm dealing with.. the better. 

Near the end it get pretty intense, just me telling him all the referrals and specialists that I have, and how if nobody is going to help any of us get a diagnosis.. I'm stuck. We are stuck. With these bodies that don't work right on the inside and look fine on the outside. 

It was pretty quiet there for the last 5 minutes while he madly typed on the computer looking frustrated while I sat there with my nerves on end, holding back the tears that threatened behind my eyes. 

Eventually he stood up, said "ok, we're done" and nonchalantly, possibly frustratedly ;) left the room with the door open for us to leave. Didn't even come out to give the girls their suckers.

Maybe he was annoyed that I grew a backbone and decided to advocate for my family after all the years of being there, being the "supportive, happy mom"? 

As we were checking out, the receptionist informed me that my oldest daughters referral for rheumatology was denied because there is no prior mention of joint pain at the dr's office. So doc would need to see her and talk to her about her joint pain so the referral for that can go through. 

The sleep study for my middle daughter has been put through, i'm waiting on University of Michigan to call me to set up the appt. I shouldn't have to call them. 

And I got genetics referrals! BOOM! 

I just need to call the office back with the phone number and fax number for Toledo Hospital Genetics so she can confirm and send. 

YES! 

I'm gonna go ahead and call the genetics clinic to talk to the lady about the email and set up the appts and then have Kelly call her and send the referrals. :) 

FINALLY! We're getting somewhere! 

...

I just got them scheduled for their genetics appointments.. 

Need to get Jazmine in to the dr. for her rheumatology referral and genetics referral.

So I have to go back to the dr's office next week for her to talk to him about her joint pain and will bring her list of symptoms so hopefully I don't have to bite his head off again. :P
....
Even my middle daughter was talking to me about it in the car, how with all my research, I've figured out that I have this condition, she didn't know it was rare, because it's normal to hear about in our home. And she's all like "well, dr's should listen and they should want to help more and know more". Right on, girlfriend. *fist bump

The blue truck and the squirrel

The littlest things in life can be the biggest things to others. 

I was driving to work today and was behind a blue pickup.. and there was a squirrel. Dear little thing hopped out into the road and i'm gritting my teeth hoping it makes it across. Then I saw the brake lights.. the blue truck slowed down. 

And i literally said out loud in my car "thank you for doing that". 

The little squirrel hopped back to the side of the road it came from, it's life was saved. 

Because i'm not the only one who values the life of the littlest creatures. 

I don't know who was driving that truck, whether they were in a hurry, where they were going.. none of that. 

But it mattered to that squirrel. 

more on my referral for EDS diagnosis

well i had a referral for EDS diagnosis last year, i had it sent to University of Michigan genetics, and they denied me because the "hyper mobility type of EDS is a clinical diagnosis and not important enough to be seen at our facility".

ok so it didn't EXACTLY say that, but that was the gist of it.
and they didn't send me a copy of this, i actually called and asked for a copy to be mailed to me.
on the letter, it actually told the Dr that i had not been sent a copy of this.
so really they left it up to him to tell me that they had denied me.

like they aren't grown up enough to tell me themselves.
ugh.

....
so now, April 2018, i've met three other zebras (1 through my MI support group, 1 through a friend who was like "hey, i have another fried with EDS!", and 1 through another support group.)

the closest one told me to talk to Toledo hospital about a referral for diagnosis, and Toledo hospital sent me to Cleveland University- University Hospital (because these are the dr's that come to Toledo twice a week, but they only look at children when they are there).

so i left them a message last week about being seen for EDS.
waiting to hear back.
i will most likely call them on Thursday (give them a week to get back with me).

There is also an EDS specialist there, Dr. Mitchell. The wait list for her is 18 months. If I can't get in to be seen by one of the mobile EDS dr's, you're darn right I will be scheduling with her. I don't mind waiting. That's what I do.lol. (as long as my insurance is still in effect by then) *eye roll

cloth pads vs paper pads- WARNING i talk about blood ;)

ugh. 

lol

I have been using cloth pads since my youngest daughter was born and she is 9.5

this last month during my cycle i had to *gasp* buy and use disposable, or as i dub them "paper", pads because my stash of cloth is worn out, leaking, and needing to badly be replaced. 

*I've been working on making a whole new stash for myself for 4 months now but because of my chronic illness, being a busy mom, working a part time job, trying to keep our schedules from being overcrowded, etc life as a family of 5, and keeping the house partially clean, i haven't been able to spend the time really plugging along at this project. 

so i had to spend a week with paper pads. 

oh

my

gosh.

never again, if i can help it. 

this month i made sure prioritize my new cloth stash and literally finished it 2 days before i needed it. 

*talk about timing. 

my daughters all have their own cloth teen stash as well for when they start. 

even though only my oldest is close enough to have this happen, i want to be prepared and make sure i've covered all my bases, because i can't put myself in that situation again with my failing health. 

so.. 

i hate paper pads. 

i don't feel like i have nothing protecting me.

they are not soft.

i cannot move them back and forth once they are secured in my undies. because they are sticky. 

they are sticky.

i throw them out when i am done with them. i don't like throwing things out. 

i can't tell how much i'm bleeding, because it's all absorbed inside the paper/cotton. 

one of them left sticky paper on my undies that, even after washing them, still will not come off. :( unhappy. 

i can't use tampons anymore since having my babies, they just don't fit right. 

and i'm totally completely ok with that. 

i like knowing what my body is doing.. on it's own. 

how much i bleed. 

how heavy, constancy, when i naturally stop bleeding.. 

i say that because using paper products can actually make you bleed more, cramp more.. just suck the life out of you more. 

never going back to paper again. 

ALSO 

if you would like information on where to BUY said cloth pads, PLEASE ASK! 

OR

shop on Etsy.com :D 

since i'm not able to keep up with making pads for other people, i am more than happy to point you in the right direction!

Food for thought "someone always has it worse than you"

This happened to me a week or so ago. (I've heard it quite often)
I've actually told myself this before, but i'm learning that it's not healthy to do that, because then you actually invalidate yourself.. and that's not ok. You are valid.

Someone had been talking about a certain physical ailment and it was something that I personally deal with, so i told them a little bit about my health as well.
And then came the line "I guess it could help to remember that (dun dun dun) someone always has it worse."

SOMEONE ALWAYS HAS IT WORSE

I have a love/hate relationship with this statement.

I understand that the person saying it is trying to be helpful, they're trying to make the person in distress feel better or to look differently upon the situation, feel more empathy.. but I also understand that a dismissive statement.

The person on the receiving end of this feels belittled, feels like what they're going through isn't important, like their distress doesn't matter. It doesn't give that person space to feel like what they're going through is valid.
It belittles their problems and their frustrations, also making them realize that this person that they just opened up to isn't going to be helpful to them in this area of their life. Just another way for them to close themselves off from others.
The thought process being "I opened myself to this person who I thought would understand and they made me feel unimportant, and it hurts".

I know because, as I said before, this happened/happens to me. I'm one of them.

Yes, it is true, that there is generally always another person somewhere who is going through something harder or hurting more.

But for the person who is trying to reach out to have somebody say "I'm sorry you're going through this" can feel like they weren't listened to, their feelings don't matter, and that what's happening to them isn't that important.

Food for thought. Bet careful when you say things like this.
And if you're on the other end, the person listening to someone in distress, instead of saying something like this quote, or if you feel awkward or don't know what to say, that's ok. You don't have to respond. OR If you feel like you must say something, a simple "I'm sorry you're going through this" or just "I'm sorry" is HUGE.
Sometimes people just want another person to listen to them. Just to say "You know what, i'm struggling right now. Please just be in this moment with me and help lift me up. Don't put me down, i'm already low".

more body stuff.. MCAS, POTS, and other things.

So I have a cardiologist now. 

And have worn a heart monitor, had an EKG twice, CT scan, MRI of my brain. 

(palpitations, vasovagal syncope, neurocardiogenic syncope and POTS) 

I have a neurologist now. 

Have tried two medications now that aren't helping my migraines. I have a follow up on that tomorrow. 

I have been diagnosed by my PCP with thoracic outlet syndrome, hypermobility, myopia, fibromyalgia (so we can work on pain management), pelvic floor dysfunction, scapular dyskenesis, myalgia, unspecified fatigue, polyarthralgia, chronic musculoskeletal pain. 

I have an allergist appt on May 1. I feel like i have MCAS (mast cell activation syndrome). Would explain so many other things, like allergic reactions (the ready i have so many pimples/rashes, feeling flushed), having canker sores constantly my whole life, bladder weakness, the problems with my gut.. 

Oh I can't wait to see what he says.

....

I love that i'm getting somewhere and learning more about this crazy body of mine! 

All of this within a year! 

Just keep pushing, Cami. 

Make the phone call. 

Send the email. 

Get er Done! 

Hoops for Genetics

So I started off doing a free genetics study through Facebook called Genes for Good. This was mostly to find out my nationality, etc. 

But i'm wondering if there's something in the raw data that points to health genetics as well. 

In the meantime I've gotten a genetics referral from my Dr and had it sent to University of Michigan, who denied me based on the hEDS suggestion from my Dr. (Hypermobile Ehlers-Danlos Syndrome). I guess it's not as important a type of EDS for them to even do a clinical diagnoses. 

Recently I have looked around at other hospitals to do Genetics testing, and emailed Toledo Promedica about genetics testing. 

I received an email telling me who to call about setting up an appointment. 

I was bounced back and forth a bit between Toledo and University Hospital in Westlake, OH. 

But it looks like my genetics counseling will come from Cleveland University- University Hospital in Westlake, OH. 

I'm waiting to hear back from the voicemail I left them (just now). 

Also, going to download my raw data from the U of M genetics Facebook study and have it read by a genetics website to see what else I can find on my own. :) 

Brain Power

work, i had a plan to work through until my kids graduated high school. so.. that's not going to happen. i'm having more neurological problems, and it's effecting how my brain is functioning, and how i can think and speak and do my work on the computer.
so what was a 9 year plan, is turning into more like a 1-2 year plan. if i make it that long.

so i'm having to come to terms with the fact that EDS is effecting my brain and how well i can think and do things. by the time i'm 38 years old, i could be very well collecting disability because i won't be able to work.

---
I got a referral for Adult Speech Therapy from my neurologist.
Today is the initial appointment to see what they suggest I do to possibly help my brain reconnect or connect in a different way.

My insurance covers 24 therapy visits a year, this includes Physical Therapy, Speech Therapy, any type of Therapy. We will see what the therapist recommends I do.

My physical therapy isn't going to stop. But i'm glad it's helping already as much as it is.

Being Brave

I have a book that i'm reading through about being brave in different ways..

and the other day my reading really hit me in a different way.

Every day there is a challenge or a question at the end to continue to help you grow and change and think.
This one challenged me to think of one way that I noticed that I am brace, and it really started to hit me that I have become a lot more brave about.. me. I'm finding my new journey in life I think, I'm becoming more outspoken about who I am, more outspoken about what I feel and what I learn day to day, and because of this I am intrigued by the way my body is working and not working, and the way my brain is working and not working.
And i'm finding myself wanting to be an advocate for other people like myself.

I'm finding that I want to write again and that I want to read again. And that i'm stepping away from the sewing chapter in my life.
Also that i'm finding more courage within myself to step away from things that are unnecessary because I want my future to be more positive and I want to challenge myself in better ways.


I'm finding that my dream of being a stay at home mom and sewing for a living has come to pass..
it has come..
and it has passed..
and the door is closing..

and a new door is opening.
And the dream that I had to be a writer and to pour out my words is now coming to fruition.

I love where God is taking me and what He's doing in me and watching things unfold and come together.

It's been such a crazy journey..
There are definitely parts of where I've been that in all honesty I would want to leave out of my story.. but I know that all the parts of my life so far have to led me to where I am now, the person I am now, and will lead me into more things to come.

Prayers, love and luck to all my readers. However few you may be.

I write these things because someone needs to.
And I need to pour out my heart,
and open my mouth,

Let's see what these failing fingers can do with the multitude of thoughts and pains that run through my life and through my head. :)

relationships

i just have to post about my best friend today.

there are two facets of my best friend..

my best friend is a man.
my best friend is my lover, my financial provider, a hard worker, a dad.. someone i can cuddle up to, kiss and tell "i love you". reminds me all the time i'm the only woman for him and he'll never leave me "till death do we part".
because it's true.. i am in love with him. and i am married to him.
we share the same faith and the same future.

my best friend is also a woman.
my best friend understands my emotions, talks to me every day, walks me through my thoughts, inspires me, challenges me and rejoices with me in the smallest things.
she is my soulmate.. we connect on a very deep level.
we also have the same chronic illness.

.....
let me tell you about soulmates.
Anne of Green Gables.
picture that.

"a person who is perfectly suited to another in temperament.
a person who strongly resembles another."

a soulmate is someone you connect with on a completely different level.

(side note on this: i really truly hope my girls can find a best friend like this. my husband asked me once if it was ok that one of my girls and her friend were holding hands while they walked together.. yes yes yes! i want them to love each other and make deep connections.)
.....
There is a notion that i've thought my whole life to be true.. that your spouse is to be your only best friend and your soulmate.

This is false.
I'm finding some things I was taught growing up to be different than what I've learned more recently.

Yes, this relationship is to be considered the most important (spouse). A spouse is someone you should be able to say anything to, to be completely open and honest with. To share the depth of who you are with.
This is true and false.
Not everyone can handle every part of you.
There is a balance of trust in every relationship. And I am figuring out who can handle all of me, and who can't.

Trust: Reliance on the character, ability, strength, or truth of someone. One in whom I can place my confidence. Someone to depend on.

I've found that having a soulmate is a privilege. Not everybody actually meets and/or has a relationship with another person who is perfectly suited to them.. who so strongly resembles them that it's almost like having another version of yourself.

I found this, not even knowing it, in my Junior year in high school when the new girl and I hit it off. We clicked right off the bat.
We have had that deep relationship from day 1.
The thing is.. with a soulmate.. as long as there is mutual respect both ways.. you will know each other and love each other unconditionally for your whole life.
.....

God did an amazing thing for me.
He created my best friend.
And He did it such a profound way that I have the best of both worlds. I just feel so blessed that both of them were put in my path, and I said yes to that relationship.. twice.

Sometimes there is doubt, or tension, or possibly jealousy of one or the other.. but all in all.. my two most important human relationships are such a blessing.
Yes, sometimes there is a balancing act.
And I want to share my deepest darkest parts of me with both of them.

Hoping I can do this.. but it will take time. Because even I am still learning about myself. And I always will be.
And i'm enjoying learning more and growing more with both of them.