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.