Hey everyone. I know I don't post on my blog anymore but this update was too long for instagram.
As some of you know, I have intracranial hypertension, meaning I have increased fluid around my brain. Well during my last phone consult with my amazing EDS (Ehlers Danlos Syndrome) doctor, who is also the top EDS doctor in the country, she suggested I see a vascular neurosurgeon, Dr. Kenneth Liu in Virginia.
He has found a connection between patients with EDS and intracranial hypertension and them having a lack of blood flow to the brain.
So we called up, got the paperwork, filled it out and sent it back and today, I got my appointment! It is for and I will also be getting a MRI that day.
Since he is in Virginia and I'm in North Carolina, that means we will have to stay overnight and we will also be having to get a rental card because the car that could get there isn't quite big enough for everything. Of course, the cost can add up quite quickly so I've decide to do a fundraiser! I did one last year and it was incredibly helpful and I was overwhelmed by how kind you all were to take part, so I knew this was what I needed to do again.
Also, depending on what he finds, I may have to return later for a surgery which of course means a longer stay. But, if this is the problem and the surgery fixed it, that would mean I could come off some medication that have some nasty side effects!
Just like last year, I will be selling shirts through Bonfire (they have rebranded from Bonfire Funds) and my goal is to sell 50 shirts! With all of my amazing friends, family and of course my amazingly supportive followers, I definitely believe we can achieve that! I've decided to go with the "when all else fails, take a nap" quote, because lets be real, I think everyone can relate to that!
I will be starting the fundraiser and I believe it goes on for 2 weeks so I would be incredibly grateful if you would share it with your fiends, even if you are unable to buy a shirt!
I know that most people don't understand a lot of the medical talk but are still always very supportive and I just want to thank you all for that! <3