Hey everyone, welcome to #SpinaBifida.
(upbeat music)
I had an original video planned for today.
But a lot of things happened this weekend.
And I'm not really in the mood to talk about them.
I thought I'd give a little Spina Bifida update.
More specifically just how my Spina Bifida is.
How I'm feeling.
I talk a lot about Spina Bifida in general, but I have
not really talked about where I'm at health wise.
I did make a video a while back,
talking about my energy levels.
And since that video, it's fluctuated.
I get very exhausted at times,
and then I get a lot of energy.
I'm been trying to figure out my diet to see how much
that plays a part of it.
And taking some vitamins I know I'm probably lacking.
But overall, my pain levels have been very good.
I've been dealing right now with
a very nasty UTI.
And for the most part my body has been
healing from it.
I've been taking D-Mannose.
Which on my UTI video, a lot of you guys had mentioned.
And so I decided to start trying it.
And it's been helping a lot.
Peeing has been so much easier since it.
My back feels fine, my bump looks a little bit
bigger than normal.
Um, in case a lot of you didn't know
my Spina Bifida which is Lipomyelomeningocele,
the base of my back I have a little fatty tissue.
Which I call my bump.
But for my back I'm not really sure how it's doing.
Um, I haven't been monitored
and treated for my Spina Bifida in over 6 years.
Since I aged out of the pediatric care.
And as much as a lot of people,
got mad at my "Adults with Spina Bifida
aren't taken care of."
And a lot of them were like
(mocking) "No, the Spina Bifida Association helps
out" da da da da da.
Because a lot of people got mad at my Spina Bifida Association
video for calling them out on not caring about adults
with Spina Bifida.
It's no shock that I haven't seen a doctor
or have gotten any help from the Spina Bifida Association
since I aged out.
No regular doctor really wants to treat someone
with Spina Bifida because they have no idea
what it is.
I'm currently trying to see this one doctor
who my friend out here that has Spina Bifida sees.
Right now it's a wait game to see if they take
my insurance.
And it's just a mess.
For my Spina Bifida update, I don't know
how I am, I don't know how healthy I am.
I feel good for the most part.
But I would just like
to be monitored and I would like to be
just be treated.
And it doesn't help that fucking Donald Trump is
fucking up the healthcare system
in our country.
Which could potentially make all of this even worse.
And it's already worse for so many people with disabilities.
So that's fun.
That's a lot of stress.
And I wish I had a very happier, brighter video
for you for today on #SpinaBifida.
But
I'm honestly in no mood.
Sometimes you have good days and
sometimes you have very shitty days.
(folk music)



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