Never Surrender. by Lace Bentley

Modern medicine is cool. They can look at our brain activity with ease, measure crazy things I didn't even know existed, and fix so much damage. Well, unless you have EDS. If you have EDS, the damage quickly becomes not worth the risk, the pain becoming part of the ever shifting "norm." Even more frustrating is how little they know about what is happening to us, and how often "I don't know how to interpret these results" is handed to the patient with an "everything looks normal" and a closing of the notes. It's overwhelming. And having 28 EKG and EEG leads on my scalp and chest itches. They have been transmitting for almost 3 days, a tech is coming to remove them in 15 hours. I'll have tons of sores that will take weeks (or months...) to heal, but was it worth it? Will anyone be able to tell me why I keep falling, why I'm so weak, or why I have symptoms of 3 types of seizures?

Can they tell me why my smile is fading, and the right side of my body is losing functioning? Maybe. Chances are, everything will come back "normal" and I still won't know how to help myself. That's not because things are normal, but because they won't know what it means, and no doctor yet has admitted they see things they can't explain. Instead, they tell me I'm fine. It's infuriating and stressful. But hey, I'm making this head wrap look danged good!

On another note, I'm sure sad tonight. It has taken me most of my life to feel pretty. That's not because I'm not, it's because I haven't felt attractive. And now that I do, I'm losing it to an inexplicable facial paralysis. It is devastating. There is no hope it will repair itself, and I'm not confident anyone will help me, let alone know what is happening. Instead, I cry in my husband's arms, asking him again if he's sure he can love me if I lose my smile. He says yes. I'm still scared. Then I take pictures with a friend who makes me smile extra big, and compensate a little so you can't tell. We intentionally went "yin-and-yang" for a photo. She won't wear white, which is cool, because I don't look awesome in black. The hat though... It's going to become a thing as I need to avoid bright lights and further eye damage. It's going to be adorable with my new light blocking glasses. Eat your heart out macular degeneration!

Some days I will be a warrior, and some days I will spend crying and overwhelmed with all the testing and resulting sores, skin damage and pain.

And everyday I will find joy, sunshine, peace and faith. This may take my ability to run, ice skate and dance, but it won't take my hope. It may take my smile, but it won't take my light.

I refuse to stop smiling, whatever that looks like. And I think it might be just a little sexy on the bad days... WORK IT!

I might not be in control of what my body loses, but I am in charge of how I love and live inside of it. This is my decision, even if not my choice.


So I won't give up. I'll keep fighting. That's not a choice that can be taken, and this girl? She doesn't surrender.

Love and Hope,
-Lace

Results from the surgeon by Lacy Chambers

So I made it to the surgeon for my appointment about my aneurysm. While there I found out I actually have 2 aneurysms. One in my brain and one just outside my brain on the same artery adjacent to each other.  The surgeon said that if the aneurysms aren't active then having them is less risky than the surgery but if they are active then the risk of having them is higher than the surgery. So I have to wait 6 months, get re-scanned and then we will know. During that 6 months though I don't know if it's active or not and how high my risk of rupture is. I asked if these could be the cause of my numbness and weakness and left eye dilation. He looked at my neck and found an arterial dissection  (a tear on the arterial wall). Those are very dangerous and knowing that I had one means that a dissecton is most likely the cause of my mystery symptoms. I have since had a test that confirmed that that dissection has healed. But how many have I had? Will I get more and when? This is so scary because having one can easily cause stroke at any point by part of the dissection sluffing off and going to my brain. I could also have an aneurysm burst at any time causing a different type of stroke. I am waiting to get tested for Vascular EDS but my insurance has denied the testing and it is very expensive so my Dr is trying to figure out our next move. Try not to stress my surgeon says, it can make aneurysms worse. Good luck with that. I am trying but it sure isn't easy. Thanks for all of your support and love. What doesn't kill us makes us stronger...or so they say.