Bexpolar A Bionic Zebra

One woman's attempt to.... yeah umm I am kinda new to being defined so I am trying to make sense of this all,

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So I’ve been sick, shocked I know

Well let’s discuss chronic sore throat, teamed with incredibly overwhelming feeling of fatigue, and let’s throw in some intense jaw pain from the 3 and half hour dental trip where I thought I could just keep plowing forward without any repurcutions because my jaw was opened for a long period of time. Then add in my heart feeling like it is spinning and random fever plagued by insomnia. However I am so tired I could cry. I really want sleep and when I do sleep it’s during the day when I should be up. This is getting depressing

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Hey Imagine Dragons and Adidas!!!! Listen I have a great idea for a campaign for perseverance and determination, just give me a chance to tell you my story, I’ll show you I do what it takes to never let my diseases define me, I work my ass off, I’m a mom of 4 kids who I do whatever it takes to show them that giving up not an option. There are so many moms out there that have the heart of a true champion, that we press on no matter what because our lives and their lives is worth the pain we go through. I can’t and won’t stop bugging you guys until you hear and see me. So come on time to put a spotlight on true athletes, true warriors, true inspiration and that is the determination and love a mother has for her children, and we will do whatever it takes to make sure our children see that and feel it. I am not going to give up and I am persistent. No is only a starting a point for negotiations in my mind.

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Consequence of wishes

Wishes are something I make a lot, or more like “wishing away” is something I make wishes on. Like wishing for the day to hurry up and be over with when I have a bad pain day, or just a bad day. When you live with a chronic disease that has a lot of symptoms you find yourself wishing for whatever episode you are in to hurry up and be over with, well wishing for a rush on a day has consequences, especially for me a mom of 4.

Every time I wish for time to speed up to get over a hurdle I am wishing the very precious years of my children’s childhood away. I look at my 13yr old daughter and I look at my 4yr old daughter feeling like my 13yr old was just 4 and I can picture he walking down the stairs ready for her 4th birthday party in a plaid dress. I am tearing up right now writing this, I feel selfish for hating the bad days, it just feels that the bad days are more often now than ever before and I am constantly wishing for the good days. 

It’s bad enough I have guilt over feeling like my kids got a lemon for a mom, but now I have guilt that I am rushing their childhood for selfish purposes. My heart hurts and breaks more and more. Then with my husband now being the sole provider, I like many other spouses is trying to find ways to make money to contribute financially to my family in a way that doesn’t take a toll on a body that looks and feels like it has been beaten over and over and over again. So, I’m like I will do a blog and hope it takes off or a YouTube channel and help others while maybe making some money on the side. But then that takes time to establish and then time to edit and here we are missing out on time or rushing time and that wishing starts and the consequence clock begins to tick....

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Me when I’m asked to spell my disease at the doctors office

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Hope, when you have a chronic illness and need a home to fit that need hmmm hope money???

I hate being a burden, I hate I live in such an overpriced area of the country that trying to find a ranch style home to fit my big family and all my future needs will cost you all of the hope you had inside. I am not on disability, my husband makes decent money, but not enough of it to actually buy a home where we wouldn’t have to invest more money to make it functional for me. My support system is here and moving isn’t as easy as one might think. Especially when you have a chronic illness, and one that many of us have been in waitlists to see specialist for years.

I love how everyone says “be patient” or “if you want it real bad it will happen” or “you have to hang onto hope”. Sure sure sure, let me go and print out some hope money and ask owners of these overpriced homes and these builders with their overpriced floor plans if they will accept my hope money, and maybe they can hope that my hope money turns into real money one day.

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Waiting for my next inspiration for a costume for my son. He wants armor.

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Only a parent with a chronic illness has a child that wants to cure them. Here is my 4yr old with her papa after his surgery. She has had her mindset on being a doctor since before she talked.

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EmBRACEing the zebra life #zebrastrong #ehlerdanlossyndrome #fragilebutunbreakable

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Hey hey hey hold up I’m not dying here

Ah yes I know many of you can relate to the million times we have heard doctors say “there’s nothing we can do for you , all we can do is keep you comfortable.” I know I always look around the room thinking they must be talking to someone who is terminally ill because last time I checked I’m not going anywhere.

For me it’s frustrating, it’s frustrating on the aspect of I have a genetic chronic disease that seems to sabatoge my life, it’s frustrating because I have chronic pain, not a fan of painkillers but I live in a state that has yet to get on the medicinal marijuana movement. I can’t take Nasaids because of kidney issues, but at the same time I am cockblocked by the new rules for prescribing narcotics and put on all these medications like Lyrica and I’m still waiting for that to work while I pay $60 a month after using the coupon card for this medication, yet damn it’s cheaper for pain pills with my co-pay. Then in order to take the painkillers I have to take zofran and phenagren so I don’t throw up the medication to treat the pain.

I’m frustrated because we get sent to all these doctors who have no clue really what to do with us and those who do well I am on a 2 year waiting list to see a specialist and I finally got into the Mayo Clinic but I am waiting 3 months to actually see someone and it’s a 6 hour drive from me and I have to stay for 4 days.

As for the doctors we see while waiting just to treat our symptom want to continue to inject us with stuff known to break down the connective tissues and ummm well I know you doctors sometimes ask me to spell my disease but last time I checked my connective tissues are already compromised so why would you want to make it worse and inflict more pain for which I can’t get treatment for because of the opioid issues. It’s like a dog chasing there tail here, we never really get anywhere with this disease.

My wrists are rigged with wire, my legs with pins , plates and rods, not sure what they are trying to do, however my body is like me non compliant and it just reverts back to its natural state. We like challenges me and my body, we like to ummm bend the rules, test the limits here.

So here I am after a fun 2 hours of physical therapy in an ice bath calming the burning inside my body thinking about how I can get on American Ninja Warrior or dance with Phillip Chbeeb, or Matt Steffinina all decked out in my white carbon graphite shells I wear to protect me from me. Looking like a bionic mama killing it on YouTube in an epic choreographed dance bringing awareness to EDS and showing what makes us special, what we fight for, and how we earned our stripes, and to never let this disease define our lives. Because how else am I too deal with the stress and frustration with this disease and doctors and literally show them “hello I’m here, I’m fighting, I’m not giving up so stop giving up on us.” And umm Matt and Phillip I’m free when you are!!!!

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Nerf warfare zebra style #fragilebutunbreakable #zebrastrong #ehlersdanlossyndrome #ehlers Danlos Syndrome

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Nerf warfare zebra style #fragilebutunbreakable #zebrastrong #ehlersdanlossyndrome #ehlers Danlos Syndrome

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Luv this!!

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Trapped

I feel trapped. I hate knowing my health is in the control of someone else and I don’t want to be with the person who holds my quality of life in there hands. I want to be happy

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Braiding hair equates to a right ulnar dislocation

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Sunday workout the bionic zebra way

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Bionic mom

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A glimpse into Bexpolar

Hello I did in a previous post introduce myself well sort of lol. So here is what you should know about me and maybe you will like my blog and maybe you won’t, but if you feel me or know someone in my similar situation, please send them my way.

First I am a mom of 4, and I have Ehlers Danlos Syndrome and other chronic diseases. I’m trying to navigate my world in my ever changing body, and I want to bring awareness to EDS, and also have a place to get my feelings out and hopefully inspire others and just be me. I will put a link to my vlog as well