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.

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.. 

I 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!

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.