I’ve never been a person blessed with patience. If I had to be honest, I’m probably the least patient person I know! There’s so much waiting you have to do in-between doctors appointments, for test results and even the follow-up consult after the tests are done. In my last...
Hydrocephalus
Dr “O” has done it!
Finally! I have someone who has listened, not just by acknowledging what I’m saying but by actually validating EVERYTHING I’ve been saying. He didn’t tell me I’m complex or try to palm me off on someone else. I felt genuinely listened to and experience so much empathy, which is...
Unreliable witness
What are your symptoms? How long do they last? Are there any triggers? What brings relief? Have you had these symptoms before? What else do you recall? What’s different this time? Blah…blah…blah… I often think that if I had to be part of a criminal investigation, where Hydrocephalus is...
Ever feel like you’re falling apart…literally?
I feel like I’m being “chipped” away piece by piece. Apparently some body parts you can live without, who knew? Some surgeries improve things and others bring more complications than you bargained for. This has been a consistent (almost rebellious) communication from the doctors I’ve spoken with over these...
Know what imaging to ask for..
Imaging, we have so many of them – you get used to it. But, do you know what to ask for and why? I often wonder how the medical staff, looking at the images on the screen, know what it is they’re looking at. Don’t misunderstand. I know they...
Onwards and upwards!
If life has taught me anything, and more specifically Hydrocephalus, it’s that you simply cannot give up. You can get tired of the fight, yes (repeatedly!). You can take a break, for however long you choose. Ok, realistically…for as long as Hydrocephalus gives you a pass…but I think you...
Life without Hydrocephalus
Many of us who have this condition have been born with it and therefore don’t have any idea what it’s like to live without it. Also, you can’t miss something you never knew. I posted this on Valentine’s Day and have had a few people ask: “What’s it like...
What would you do?
O for “Oh no!”, “Onward and upward”, “Over it!”? Whatever it is, that’s where I’m at. Moving on should get easier, especially after consulting with so many specialists but… It’s as trying now as it was when I first started out! 3 countries later and I appear to either...
Human pincushion
I hate needles just as much as the next person. Always have, always will. A few nights ago I had an abdominal MRI to figure out what’s causing the pain I’ve been having for the past couple of years. For now, we suspect either scar tissue from my VP...
Forget you have it…
Realistically, on a scale of 1 to 10, how easy would it be to forget you have an incurable condition? More specifically, Hydrocephalus. I’ll admit, there are days where my memory issues come in handy in this regard. To carry on with life, as if nothing is wrong, is...