I’ve spoken before about the concerning aspect of the medical professionals, who treat Hydrocephalus patients, who are not on the same page. There are just too many people walking around without proper aftercare or dealing with medical staff who are uneducated in terms of Hydrocephalus. I myself am one of these people and am also in the unfortunate position of having to live day by day, praying that I never need to call on them ever again. I pray for this more because I have zero confidence in any of them after having been let down one too many times.
I wrote about passing my 7 year ETV milestone and am grateful that I have been without any pain or symptoms for a long time now. Each day is a gift…(I tell myself repeatedly until it sinks in. Some days it’s harder than others).
Still, I can’t help feeling that there is a big need for change within the medical profession and the care they provide to Hydrocephalus patients.
I used to watch a program on TV where family members and friends would have interventions with loved ones (The name escapes me now), in order for them to change their ways. They weren’t necessarily bad people but their actions were affecting the people around them negatively. It wasn’t until someone stepped in and effected the required change…no matter how small the first step needed to be. It makes me think that the same is needed for all these doctors who give, those of us who have experienced it, bad care.
I could almost envision a patient going into a consult with the backup of a few fellow Hydro warriors at their side. Anything this doctor throws at you could then be questioned and disputed with stories of their own accounts, forcing said doctor to look at/consider all possibilities. Don’t misunderstand, I know that physiologically, we are not all the same and I get that (It’s not a one shoe fits all kind of situation). I know for certain, had I had my friends from the ETV support group in the room with me when I had my last consult, it might have ended differently for me.
Thankfully, though as I said, I’ve been feeling fine with regards to my Hydro and (at this moment in time), I don’t feel that I need any medical help. But, we (Diagnosed with Hydrocephalus) all know that can change at any minute…
It does make me wonder…what is the ultimate answer for us all? Why is it that we are forced to accept this kind of care and feel helpless? Why do we have to go from one doctor to the next until we find the one who will take us serious enough? Is there a way to get these surgeons on the same page in terms of the research and knowledge that has and is being done?
I know for a fact that there are doctors out there who go above and beyond to help their patients, doctors who listen and actually come across as genuinely caring humans. It’s not these ones I’m referring to but the exact opposite of them, I’ve had experiences with one too many of these type of doctors.
I’m working my way up the alphabet in terms of doctors I’ve seen and am still looking…I hope the day never comes where I’ve run out of letters in the alphabet…(much like the skeleton of a woman, sitting on a bench, waiting for the perfect man to come along. Dear Lord, I hope I don’t end up like her!).
I’ve been asked the question before “Why do you fight with the doctors and not just accept what they are telling you? Maybe they are right and you are wrong…“
I suppose since I don’t have a medical degree to back me up, it would be easy to just walk away with my tail between my legs. However, I’m reminded that this is my life. I need to fight for who I am, for my children and husband but mostly because if I don’t, I might as well dig a ditch and throw myself into it.
I’ll break it down for you…My need to keep on fighting and not just accept what I’m being told that is.
As an example and speaking of digging ditches and throwing oneself into it. My husband began a new job last week. He ended up physically having to dig the holes with a spade needed for the fibre installations that will be done in time to come. Unaware that this was part of the job when he accepted, since he’s a Fibre technician, it was painful to watch him come home at the end of the day, each day and see how physically drained he was. I wished I could make it better for him, that he didn’t have to go through this. His colleague, much older than him, joked about “digging that Flippen hole and throwing himself into it“. But, each day they’ve been going back and now, at the end of week two, they seem to just be going on and getting it done, doing what they need to do. They do it in order to survive life and all the financial responsibility that comes with providing for their families.
Similarly, I have days where I feel like throwing in the towel and not rebel against the doctor’s efforts. But, in the end, I owe it to myself to stand up and say, this is not working for me…as simple as that! I do it in order to survive living with an incurable condition that changed my life a little over 10 years ago.
Wouldn’t it be great if we could stand as a united Hydro front against these doctors and have an intervention to get them on the same page…? I’m sure it’ll benefit future generations…at least until a cure is found…
Oh…I can only dream…