Wednesday, June 28, 2017

more things about my EDS

I have been photo journaling on good days.
So now i can actually see my hyper mobility and "prove" the brighten score without having the physically do it every time.

I've opened up to some people at work and told them about my newest DX (fibromyalgia and hypermobile joints with a referral to see a geneticist).
They have been fantastic about it!

At this point, i'm treating my body like it is hEDS, because i'm pretty sure that's what it is.. possibly with a cEDS overlap.

One thing i will say about my Dr..
He has been open so far only on some details that i've shared with him.. showing him the hypermobile fingers, talking about possible cardio issues because of my family history and possible heart palpitations. He does understand that there are so many things that go with EDS, that it's like a big pie, and over time we're going to chip away things that it isn't in order to find out what it is, and everything that goes with it. (he actually used that analogy, i stole it) ;)

The thing I didn't like is that when i mentioned the possibility of cardiology and neurology appointments (different shooting pains, possible nerve problems, told him about the weird radiating shooting feelings i've had on the right side of my head twice now, that my fingers and toes get cold easily- bad circulation?), he didn't see to care as much about that right now.. which to me, at least cardiology would seem important, since it deals with my blood pumping muscle. Am I wrong to be concerned about that at this point?

Also when i showed him my varicose veins and told him about all my stretch marks, he said "well, the thing about those is lots of people have them". So does that mean i'm not supposed to be concerned about them?

I think maybe he could be overwhelmed with me as a new patient. ;) He knows about EDS and, of course, has seen many of them himself. So i could be his guinea pig.. who knows. Going to give him the benefit of the doubt.

Just so many things I'm thinking about.
Thanks for listening!


Coffee in hand
receipts ready to check off my banking
want to schedule some fun things for the girls for the summer
going to get 1 more blood test done today (they forgot one) *sigh
mending mending mending
and taking the girls to the Corner Park before our membership expires
(gonna have to wait to renew for just a bit.. finances)

Livy has another horse lesson today
she's running barrels at the fairgrounds next weekend

life ;) 
a nice silent start to my day. 
Thank you God for the chance to wake up to another day!
and for this lovely gift called the coffee bean :D

Tuesday, June 20, 2017

My (possible) life with EDS.

At this point in my life, i'm about 90% certain I am a Zebra.. that means I was born with a collagen disorder called EDS (Ehlers-Danlos Syndrome). Most of the time it's genetic, but every now and then it will manifest itself spontaneously. From the research i've done over the past.. over 2 years now (recommended by a great friend who was recently DIAGNOSED as hEDS).. I'm pretty sure I am hEDS or clEDS. Or even an overlap of the two, which is fairly common.

MY journey..
Some things I look back on my life and see because I am just now realizing how pertinent they are to having these problems with my body.

Like falling out of the same tree, the same spot.. all the time. You'd think I would learn how to balance or climb the tree differently? This, I'm sure, had to do with something called proprioception. Not knowing truly where your body is in a certain space and time. So when I climbed the tree and stood up, I thought I was standing in the right spot far enough away from the edge of the branch, when in reality, gravity took effect, and I fell.. every single time. Flat on my back. This is why also, I'm sure, I would run into things with my bike (causing scrapes and bumps and bruises, that never healed very well, causing the scars I have today).
This same concept of proprioception effects me today (and will always), thinking my bare foot is far enough away from the door, but still getting slammed into, bumping into tables and chairs, cutting my finger with the steak knife while i'm cutting, paper cuts.. you get the drift.

Pains in my body that I thought were normal..
and then pains in my body that made me stop being as active as i wanted to be. Like the year I was a sophomore in high school and I didn't know running on the track was bad for my body.. The sports trainer had to wrap my knee for track meets and after that year (i had chondromalacia patella), I was told I could not run track anymore because of the toll it was taking on my body.
Luckily they still let me be a cheerleader (I think probably because of my height, my strength, and my dedication.. they needed me on the team).  My flexibility helped with this as well, though my hips were hurting.. I was a human pretzel, twisting my legs behind my head and bending my fingers backwards.

I have always been a singer and dancer as well. I have always had a very broad range vocally, and now I feel like it's because of my flexible vocal chords, they stretch more than normal ones do. And my dancing, I can point my toes like a ballerina (without training them, stretching them.. anything) but my toes and ankles aren't strong enough to hold that position with the weight of my body.

When I was 21 (first year we were married) i started needing glasses.. have had worsening myopia and astigmatism ever since.

Even when I was pregnant with my daughters, my first child put my body through the wringer. I was on bedrest and low sodium diet for the last 6 weeks of my pregnancy (diagnosed with PIH, gained 45 lbs), which only ended up being a month because my kidneys were failing and she and I were going to die (yes, literally cease to exist) if they hadn't induced me at 37 weeks after catching it on an NST. My other two daughters were also quick births, never making it past 38 weeks of pregnancy. My second child was only a 4.5 hour labor, no time for meds, 1 push and she popped out. By the third child, I figured out that I really needed to be careful during pregnancy, and we planned her birth because of my labor history.
Needless to say, this all took quite a toll on my body. I was on a z-pack with pregnant with #2, and Amoxicillin with pregnant with #3. By the third one, I started feeling the effects of (what i thought was) arthritis in my hands.

More recently (Dec 2012) I was diagnosed with OA (osteoarthritis) because I went to the dr complaining of inflammation in the joints all over my body and being tired all the time. They diagnosed me without doing any tests.. come to find out now (June 2017) there is no arthritis in my body.. it's the chronic joint pain i deal with every day and sleep apnea that comes with the collagen disorder EDS.
I also went to see the same dr's office back in Dec 2015 because of recurring lower back/upper rectal pain that was/is inconstant but hurts so bad when it happens that I have tears running down my face and i just want to scream. They told me I was constipated and didn't offer any ideas of how to take care of or lessen the discomfort. So screw them.
From then on, i didn't see a Dr for anything. I have basically taken it upon myself to take care of my own sickness and daily discomfort with the help of my family and friends.

I am finally stepping into a future where I am taking care of myself, putting my health on the front burner, and saying "hey, these feelings and pains are not ok. i need to find out why it's happening and how to take care of myself". I have started seeing a DO (doctor of osteopathy) to narrow down what's NOT wrong with me in order to finally figure out what IS wrong with me.

I was diagnosed in 2014 with GAD (generalized anxiety disorder) and was told about an herbal remedy that would help level out my stress levels and hormones.. been using it ever since and it's been amazing.
I went to get my hearing checked this year as well, and I do have hearing loss, just as I thought. I can't hear as clearly, and sometimes have to ask people to repeat what they're saying.

I'm only 34 years old at this point, mind you.

We have done blood tests and hand x-rays recently.. all my bloodwork came back normal and so did my x-rays.
So now i know:
i do NOT have ANY type of arthritis, no gout, no lupus, my Vit D is normal, as is my thyroid.

The fact that I'm hypermobile is actually on paperwork now (omgosh it makes me want to laugh and cry all at once.. so good to see someone take me seriously).. and I have a referral to a genetics counselor to test for the EDS.

Oh my gosh, my life is feeling better all the time now that i'm making my own health a priority.

I have chronic pain, so my Dr says we are going to treat me as if i have Fibromyalgia for now, and continue using my braces/wraps/motility devices for my hypermobile joints and pains.
But i'm SO glad that, with the help of my two best friends (my husband, Brian, and Beth, my friend since high school).. I'm finally on my way to getting answers!

Praise God for this journey!
So glad for the people around me.

I'm not done filling in the parts of my life that have been effected by this, but i'm glad i'm getting somewhere. More to come. ;)

Thursday, May 18, 2017

Invisible Illness- 2 days ago.

As I sit in the handicap shower stall, propping my leg up on the bar so i can shave, i notice my surroundings and how i'm feeling.
My foot is propped all the way up on the bar because my hip is flexible, but i am in pain because because my joint is flexible. My hip tendons don't hold themselves up anymore, and my leg muscles are getting weaker and weaker.
I choke back tears because if anyone saw me using the handicap shower, they would think that i was being rude because of other people that LOOK handicap that need the shower.
Because they see me, and in their mind, they probably see me as a healthy, strong, young woman. Where the funny reality is inside my body that's not who i am.
During my workout, i had to be careful with my heart rate because i started having chest pains. So a lot of cardio was out of the question. I had to be careful stretching because my tendons were popping and my knees were crunching. I had to be careful with my weight lifting because I was feeling very weak.
Today is just not a physically good day.
But i will be ok because I am strong of heart, and i will make it through today because i am here. Today i will need to rest, today i will not get to all the chores in my head that i think i need to do. Because today i need to take care of me. And today, i need to remember that it's not anybody else's business if i feel like i need to use a cane or the handicap shower stall.
That is my business, and I need it. Just because I don't have handicap stamped on my forehead doesn't mean that I can't use that facility. Because inside, that's what my body needs.

Today I am going to be very careful about engaging in conversation with other people because the way i'm physically feeling, I may start crying in the middle of a conversation. I'm going to keep silent as much as possible and I'm going to keep my little safety bubble around myself.
Today I need calm and relaxing and ice and heat.

... This is what invisible illness looks like.

Friday, May 5, 2017

Having it all together

You know.. 
i was thinking the other day why i didn't have it more together, why life is so messy, why days bring so many emotional and physical ups and downs.. 

And i had a small epiphany. 

If I had it all together, There wouldn't be room for other people to speak truth into my life. 
There wouldn't be room for other people to speak wisdom to me, 
To show they care for me, 
To be there when i have a meltdown, 
To lift me up spiritually when i feel i have nothing left to give. 

If we had it all together, there would be no room for mercy or for prayer. 

We stumble and we fall.. and we rise up again.. because life is messy. 

I've come to the realization that I don't want to have it all together. 
I would rather be a hot mess with some great people in my life so we can "enjoy" the struggle together, and help each other endure. 

I'm glad I struggle. 
I know who really cares. 
Who just wants to say "hi" and walk away, and who wants me to truly cry on their shoulder and say things with no filter. 

If we're honest..

Go here to listen to the song. 

I don't feel like I need to say anymore than these lyrics do. so here they are. Perfect in and of themselves. Absolutely love this artist.

"If We're Honest" Francesca Battistelli

Truth is harder than a lie
The dark seems safer than the light
And everyone has a heart that loves to hide
I'm a mess and so are you
We've built walls nobody can get through
Yeah, it may be hard, but the best thing we could ever do, ever do

Bring your brokenness, and I'll bring mine
'Cause love can heal what hurt divides
And mercy's waiting on the other side
If we're honest
If we're honest

Don't pretend to be something that you're not
Living life afraid of getting caught
There is freedom found when we lay
Our secrets down at the cross, at the cross

So bring your brokenness, and I'll bring mine
'Cause love can heal what hurt divides
And mercy's waiting on the other side
If we're honest
If we're honest

It would change our lives
It would set us free
It's what we need to be

So bring your brokenness and I'll bring mine
'Cause love can heal what hurt divides
And mercy's waiting on the other side
If we're honest
If we're honest
If we're honest

Monday, April 24, 2017

Self Love

Loving yourself in your own skin

i was just going through my own clothes switching out from winter to spring stuff and i saw myself in the mirror and realized and i have really strong thighs. i also have... not the butt that i want to have, definitely not the butt i used to have but, it's a nicely rounded booty. i worked hard to raise that booty back up after having kids, and it looks good. lol.
i also have a very nice strong core. i can tense my abs and i can feel the tightness, the strength, on the inside of myself, which is awesome, because especially with the physical problems i have, it's important to have a really strong core and i've worked hard to keep that. And i'm going to keep working hard to continue that strength.
also when i squeeze my upper arms, the biceps and triceps are both nice and tight, not just the top. i don't have floppy arms, i have nice strong arms.
i mean my hands are weak.. i know my hands are weak, because all the tendons and bones and everything that's supposed to hold together just don't work as well as they should, but i have nice looking hands. and i always get compliments on my nails. for one, nail polish has always been a thing for me. it's my hobby.. i love doing them. but just the fact that my nails, that i keep them nice and strong and trimmed.. i've actually had people ask me "how do you keep them looking so nice?". well my secret weapon is like a fiber polish as a base coat. i think anybody has a nail problem of some type, i really just think it's about learning how to deal with the kinds of problems you have. learning how to make any area of your life better. taking the time to make your life better.

Just as my oldest daughter said in the car the other day "if we don't take care of ourselves, how are we supposed to take care of other people?" and that's very true. she's learned that from me because i've been teaching them that you have to take care of yourself. you gotta learn to take care of your own body, keep yourself healthy, to eat the right things, to exercise. to make sure your put in your mind what you want to come out your mouth, because whatever you put inside of you is going to come out.

i am on a journey of self love because my weakest part about myself is loving myself. i don't have a very good body image, i never really have. being tall, being skinny.. i've never had a figure, i've just always been very fit, athletic, but i feel like.. i'm not a voluptuous woman. i'm just not. and that's ok.. because i feel like if i had more curves, if i had more of that femininity, i would get more of that kind of attention and already the attention that i do get when i do look good, when i do feel comfortable in myself.. i don't like that kind of attention. so i'm learning how to be ok with positive attention regarding how i look.

so this is a journey for me, being comfortable in my own skin, looking in the mirror and saying that i like what i see, or just thinking positive thoughts about who i am.


Also, i should remind myself that my husband.. loves me.
he loves the body i have. he loves my personality. he loves.. who i am.
his admiration for me is really a good booster for me, because of how sometimes i feel about myself.