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.