Tuesday, March 20, 2018

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. :)

Thursday, February 8, 2018


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.

Thursday, January 25, 2018

even more things linking to EDS

So after much more research and Dr apts and test that i've had done.. 

I'm noticing more and more things that are linking my life to being a Zebra.. someone who was born with a Syndrome called Ehlers Danlos. 

If you don't know what this Syndrome is.. basically think of building a house. If you get good supplies and spend time and money on the project, it's going to be a good building. It's going to be sturdy and last a long time. But if you buy subpard supplies, use cheaper nails, still put it together the "best you can", give it a few years and it's going to start falling apart. Sure you can probably level pay for renovations (wraps, braces, surgeries) but it's not to be the best building it could have been. 

The building supplies are like the collagen in your body.. the glue that holds it together. And because it's connective tissue.. connective tissue, connects everything. 

I'm realizing the skin issues i've always had (pimples in my ears, certain types of earrings being "eaten away" by the high acidity in my body, canker sores, stretchy skin, different types of scars, sensitive skin, pimples/calcium bubbles) are all related to this connective tissue issue.. 
Sometimes I accidentally scratch the inside of my ear when I clean my earrings, and I will break open the skin of my ear will bleed.
My ears used to get so infected, especially if it was something with gold in it. Even now if I have a nice pair of earrings, I can only wear one day or it will start turning my ear red and itchy.

I always had to paint the insides of my cheaper rings with clear nail polish, or they would turn green AND my finger would turn green. Multiple times, I would have to reapply it. 

making me a prime candidate for a cEDS (classical ehlers danlos) diagnosis. 

I've also always gotten dizzy and had tachycardia when i stand, so i've learned to stand up slower, or take a minute to even out when i do stand too quickly.. or i'll pass out. 

I recently had a tilt table test, checking to POTS (postural orthostatic tachycardia syndrome), and they said usually people will get dizzy or pass out within 20 minutes, if they don't they are given meds to MAKE them pass out so they can record what the heart does. 
I passed out in 6 minutes flat. 

Every time I got dental work done and had a filling, even with the Anesthetic I could always feel the drilling in the poking. I had no idea you weren't actually supposed to feel anything. This was my normal. 

I could always feel what they were doing, and the grinding of the drill… That is no fun.

Another one I’m finding more recently… I work at the front desk member service counter of a family fitness facility… And you have to have either a membership or guest pass to get in through the gate. Whenever I go to push the button for the gate, I always zap the button and it opens the gate without pushing the button. (no wonder I’ve killed so many watches in my life… I’m electrifying) LOL. 

My apple watch so far has been good  But i still have my old watches, the ones that i've killed because of my super "kill electonics" powers. sometimes i'll wear them as jewelry LOL. probably because they are still pretty and i have tiny wrists, so most bracelets flop all over the place. these actually fit me.


Needless to say.. this has become quite a journey. And i'm glad to finally see pieces of my health make sense. 
So many things in my life always made me feel crazy and hypochondriacal.. 

don't like feeling like I don't know what i'm talking about. 
And I sure as heck don't like being made to feel stupid. 

SO GLAD to be taken seriously. 
Validation goes a long way!

Monday, January 22, 2018

life changes

I took inspiration from a conversation I had with a friend this weekend to dive into where i pictured myself growing up. What i wanted to do and how i felt about certain things.

I always pictured myself having kids and being a stay at home mom.. which i was so blessed to be able to do for a time!

But i also feel like i never really wanted to work. I never really wanted to have a job and work outside the home. Honestly if it weren't for the need for income, I would really only volunteer somewhere a few hours a week, and that will be all, work wise.

It's almost a relief for me, in a way, to know that my chronic illness is slowly taking that away from me. There's a part of me that doesn't want to give up my sense of independence, being able to do things for myself and feel like i'm contributing to my family, but i wouldn't be that sad if i couldn't go to a job anymore.
I'm slowly being ok with the fact that someday, i'm not going to be able to.
I have a 9 year plan.. if i can physically and mentally work until my kids get out of high school, i will feel a sense of accomplishment.

School and jobs have always really been a burden to me, and i never really realized this until recently. I'm glad God has blessed me with the ability to do these things this far.. but i also have a feeling that someday, when i'm unable to fend for myself, i will be using my voice to bring more clarity and awareness to chronic illness, and how it does rob people of these things (whether they are ok with it or not).

The hardest part for me in all of this is the fact that I'm unable to exercise like I want to, like i used to, and when i do, i have to be careful.
I am gaining weight.. which i'm not ok with. I've never been overweight in my life.
I'm losing muscle strength.. which i'm not ok with. I've always prided myself on being fit and strong.

But i'm slowly coming to terms with the fact that my goals are different now.. as long as I have moved my body a little everyday, focus on my diet changes, and be ok with not being a skinny tall girl.. i think i'll be alright.

And i'm OK.

Thursday, September 14, 2017

my thoughts on pain..

I was working out this morning at my gym, watching HDTV like i almost always do, and realized there are SO MANY pain killer commercials!
What the heck?

Are people so afraid to feel pain that they medicate constantly?

When your body sends out signals, it's so you can listen to it because it's telling you something, not so you can numb it and shut it up.

We really REALLY need to be better at taking a minute to say "hey, i'm feeling something, what should i do about these feelings?" whether physical or emotional, instead of "oh i don't like this feeling, let's get rid of it with a pill so i don't have to worry about it" and go on your merry way like nothing is wrong.

Ok so don't think i'm saying pain meds are a bad thing. There is a point to where, yes, you need to use them to get through a day.

I just think we rely on them way too much, and this one reason people are a lot more apt to dismiss OTHER people's pain as well.. because in their own lives, it's muted or snuffed.

Tuesday, September 12, 2017

the motorcycle date weekend.. vroom vroom

so my husband and i decided the last weekend before school started (labor day weekend) that he and i were going to have alone time!! the kids went to grandparents houses for the 3 nights and 3.5 days ;) and we swapped bikes with someone else so we would have a more comfortable ride.

Friday.. we basically just did a joy ride close to home to get used to how the bike felt.. stopped at his aunt's house and our old neighbors new house.. and a new place to eat in Morenci. Rumors, where i tried a blackened mushroom burger.. yum! (didn't care for the "blackened" but the rest of the food was so good) And they have this cute little fairy house built into the front of the restaurant under the bar stool seats. HOW COOL

Saturday we slept in.. ahhh yes.
This day was the longest because we drove close to 200 miles.. yikes!
Went down to Hudson Leather- never been there. Pretty neat place! Out in the middle of nowhere.
Stopped at a fun little pub in the basement of an old church for a late lunch/snack.. i tried fried green tomatoes.. YUM! And Brian got this MASSIVE bavarian pretzel. I paid $5 to take a stuffed church mouse home with me because they are funding the renovation of the pipe organ.. which is huge and beautiful!

From there drove down to Ney, Oh and then headed toward the River and took that all the way up to Waterville. (passed through Florida Oh). THAT HURT MY BUTT. lol.
THAT was a long ride!
We made a side stop at Whitehouse OH and ate at the Whitehouse Inn. Again YUM!
Well, my dish wasn't as good as Brian's.. but i decided at each place to eat something different than I have before. I knew i wanted fish and broccoli but i'd never had fish and chips.. didn't like the fish. Loved the fries and the broccoli though ;)

When we got to Toledo, we went to the mall (i used my birthday coupon from Victorias Secret to get 3 purse sized lotions and a lip gloss) and just did some walking around. I was talking to a lady by the smoothie bar (brian got a mango smoothie.. that tasted like chalk) and this lady had a little yorkie in her backpack!! Omgosh and i got to hold him! SO CUTE!

On our way home we saw fireworks going off on 223 so we found them and stopped to watch for a few minutes. :)
When we were about 15 minutes from home on 223, we came upon an accident.. waited about 20 minutes for them to clear it up. The lady in the car behind us had been driving since 6am coming from GA and was going straight up to Albion.. yikes. Now THAT is a long day. We both fell asleep in the living room and woke up during the night to actually go to bed. lol.

Sunday we also slept in ;) stayed home a bit longer. We weren't going to be out as long or drive as far so we took our time. Went up to a beautiful trail near Ann Arbor (we've been there before.. love it) and stopped at this huge shade tree we like to use as a stop on our rides sometimes.
We went to Blimpy burger in Ann Arbor on our way up.. another place we love to go. I tried a double with an egg this time.. something i've never done. Pretty good! I'm glad i got a smaller burger and a smaller side this time.
Just kind of mosied on our way today.. not in a hurry, just hitting up some of our favorite spots. We ended the night going to a movie in Saline and ordering dinner at the theatre. My chicken bacon jalapeƱo was so good! And I got a long island iced tea.. very well made.

Monday we basically only went one place (happy labor day!) out to Artisian Wells (not the restaurant, just the bike shop next door). We were going to stop at Basil Boys for lunch, they were closed. So we were going to go to Brownies, they were closed. So we decided to make it a family affair and picked up the kids from my moms house before we went out to Aubree's.

Went home, rested, put away everything from the weekend..
put Jazmine's hair color in and re-shaved the side of her head for school.

all in all, we drove

and i definitely enjoyed it. :)
it was nice to hang out with my man, just the two of us, for a while.

also reminded me how much of our surroundings we take for granted.
i love where i live!
i love the fields
the corn
the smell of bonfires, manure, fresh cut grass, fresh air..
i love seeing the hawks glide through the air
passing tractors on the road
watching the wildlife scamper around when vehicles go by

Thursday, August 24, 2017

my EDS day

Today is an interesting day.
Woke up with a migraine.
Luckily I didn't have to work today so I stayed in bed as long as I could, and then got up.. *hacking* Sorry about that, my throat's kind of dry.
Made my way down to the kitchen and made my coffee.. took some tylenol migraine. finally the last two pills in the bottle. it doesn't work for me as well as it used to, so i was kind of hoping to get rid of it quickly. i'll be taking excedrin soon.

my left knee is very unstable today, keeps giving out on me, so i'm going to wear my unloader knee brace, which is awesome.
not sure i'll be wearing it when i go out later because i'm going to go swimming with my girls and i don't know if it'd be easier to wear the unloader and just take it off when i go to the pool, or if i should just bring my cane because i have two other stops to make. Decisions ;)
funny the things we take for granted.. which contraption will help me walk best today?

#35yearoldbody #25yearoldskin looks/feels awesome ;) #ifeel60inside.

oh yeah, the cause of the migraine.. my TMJ joint (which actually sounds repetitive).. my TMJ is very tight and i have pain and pressure around the top of my neck/base of my skull..
enter the frozen bag of peas.

also will be wrapping my hands in compression gloves.
yesterday i wore my thumb/wrist wraps with my rings because i've been hyperextending a lot lately and using my hands a lot and it's caught up with me.
my hands feel better than that today.. still musculoskeletal pain through my hands.
I had a bit of inflammation last night, i was icing quite a few of my joints.. today, inflammation not so much, but musculoskeletal pain YYEEAASS.

*whew. out of breath

Oh yeah, i forgot, last night about.. i'm gonna guess 2 or so AM, i woke up with more stabbing rectum pain that i've had before. i haven't had that in about 2.5 months so i'm not quite sure how that happens cause it really not regular. it just pops up out of nowhere. ;)

ahh the Zebra life. *peace.