Was there any specific age where your health drastically changed? If so, when was that?
Yes, um, like I said, my symptoms were pretty mild uh, when I was growing up, not very noticeable
to me, uh, I just thought everyone had similar struggles. Uh, my mom and dad,
they dealt with chronic pain and chronic migraines so I just thought it was normal.
Around age 23 the joints in my feet began to basically.. collapse, which was really painful, my feet
became like bags of jumbling bones, and my ability to walk became limited to the point that
I FINALLY decided to see a doctor and it started my diagnosis journey...
...And as I was doing that my health just kept declining and rapidly. It was just-- it felt I was doing
just fine and then as soon as the stuff in my feet started, phoo phoo phoo, Jenga pieces
just crumbling down! Um, my joints throughout my body became more lax, my chronic pain spread
and heightened, I was losing physical abilities all over uh, may continue to do so, uh, sleeping
disorders began to really impact my life, chronic fatigue, uh, more frequent light-headedness,
tachycardia, and migraines. It just felt and feels like I'm rotting from the inside,
like I'm falling apart.
What medicines, treatments, and other devices do you typically need? Do you have access
to all your needs?
I just made a video about the mobility aids that I use and have used and I will link it
here!
Um, as far as braces, I used my finger ring splints that my amazing sister-in-law made
for me! Um, I also use ankle braces, knee braces, uh, wrist and thumb braces, uh, my
thumb's always trying to leave it's socket!
Uh, I am in need of an SI joint belt and a shoulder-- two shoulders-- everythings sucks
so if you ever wanna get me a present, any kind of brace will do!
Ha! Uh, I still need shoulder and elbow braces as well.
Um, I don't NEED a neck brace JUST yet however, um, I feel like it's gonna happen soon,
I feel laxity in my neck, less stability than it used to have and currently the best thing
I can do for it is I do use a neck support to sleep. Um, ooh! It's actually right here!
This is what I use to sleep! It's Baymax! He gives me a hug!
Um, I'm also considering a rollator or a cane with a seat for short trips outside.
Due to lack of access to resources; both doctors that know enough about my condition to prescribe
me accurate medication and the money for those accurate medications should the doctors prescribe
them, I currently do not take any medications that cannot be bought over the counter.
Uh, so when I can I take vitamins, I use Excedrin for my migraines and Excedrin is actually
helpful for my chronic fatigue as well whenever I do take it. It does sometimes negatively
impact my tachycardia because of the caffeine but [SIGH] everything is give or take.
I don't have access to accurate pain killers; none of the painkillers that I've tried
or been prescribed have worked for me, um, so I just have to deal with it.
Um, the pain often makes me immobile, pain usually keeps me bed bound.
Um, I can manage the consistent pains that I experience enough to not constantly be moaning
and crying, like right now as I speak to you, I am in pain but I'm just not crying about
it. Like right-- if you could see pain, you would see like glowing spots of red throughout
my body but you can't see it, the only way you know is if I tell you cuz you probably
wouldn't have known that I was in pain this entire video.
Although I can manage it to the point where I'm kind of functioning, right? Like currently
I'm sitting and I'm speaking to you, that's like moderately functional, I'm not like
getting up and doing cheer dances for you but I'm still kind of able to speak.
There are sometimes where the pain really high and it comes in bursts, it comes in contraction-like
kind of bursts that are really bad and really surprising, um, last time in put me in the
ER is how high the pain was.
How often do you go to the hospital? And are you comfortable in those spaces?
[Sigh] whenever I can afford to go? I sort of fake comfort in those spaces, uh, overcompensating
for how uncomfortable I am.
My diagnosis journey was incredibly traumatizing...
It is- it's a lot for anybody even if you don't have a history of abuse, I know people who have not, to my knowledge,
had a history of abuse and but seeking diagnosis and having doctors telling them that nothing is wrong
with them when they are suffering in pain has caused them to break down repeatedly.
Um, and that's what happened to me, I would have an anxiety attack before and after doctor's
appointments because they were horrible, horrible environments, um, not just because they didn't
have answers but because of their attitude… without the answers.
Because I've had doctors laugh at me, I've had doctors outright tell me that I was exaggerating
and that the symptoms that I was discussing with them were not possible.
Um, and so it was a real power imbalance, very scary, to go to a space where you're
supposed to… you know, make yourself incredibly vulnerable um, and ask for help uh, and they
are supposed to want to help you, that is their job… and that's not what I found
at all. I just found people who… looked at me like I was a waste of their time and
it was a lot because these are the people that we are supposed to turn to and then they
were unreliable and they were cruel... so then where do you go after that?
And to this day I go to doctors and even with a diagnosis most doctors, they are not familiar
with EDS at all, and they CANNOT help me because they lack the knowledge.
Um, and so it just feels useless to go, to the point where I'm kind of glad that I
don't have the money to go as often as I should because it is so much physical and
emotional labor to go to the doctor and on top of that be tossing, tossing, BURNING money
going there, to the same results that I get from not going.
And again I say this with a lot of privilege that for now I don't NEED them to wake up
tomorrow morning, um, I don't know what I'm gonna do when that day comes that I
need them and I still don't have the money for their help, and I still can't find the
doctors who can actually help me.
What kind of resources and support do you use?
Uh, the internet! I've made incredible friends online who also have EDS and we're basically
each other's support system, checking in on one another and things like that.
I've also learned a lot from online support groups.
I have a few incredible people who care about me, and who check up on me, and text me, and
see how I'm doing... which I'm very grateful for. I'm grateful for-- I - I am very fortunate
that I have quite a few people in my life who care and I-- sometimes my depression makes
me forget that so I'll say it right now…
I know I have a good handful of people who really really care about me and I'm very
grateful for that.
I also do a lot of my own research and just try different things, trial and error, and
see what works.
Ugh, and that's it for Part 2 of #ThisIsMyEDS, thank you so much for watching that!
It was pretty emotionally exhausting to ride the diagnosis train that I just went on, um,
but I'm also happy to share...
And happy to make you aware..
Da da ta!
Diagnosis journeys, no matter what your condition is, can be incredibly emotional, um, like I said there's a lot
of emotional labor and physical labor involved in that, it's tough to be chronically ill
and still have to fight for yourself every day.
It's hard not to just want to give up, I'm kind of, actually in that space right now
where I'm so tired and I feel so weak physically, uh, that I'm just like, "Well, I quit."...
Um...
But... you know, I don't think this is really quitting, I think I'm just taking
a break, until I can get back up again, and start seeing doctors again, um, once I have
the money and I'm prepared for the labor that I have to perform.
If you're feeling similarly, please share in the comments below, please share with me
your diagnosis stories because they're all so powerful and I love reading them and sharing
my solidarity with you.
Please remember to subscribe and click that notifications button because I am inconsistent
as hell and I will see you eventually, bye!
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