Sometimes I hate the internet. I hate the hateful comments I read almost any time I click on an @enews post. I hate the hate. But for all of my frustration.... Sometimes I have days like today where I remember why it’s worth it. Since posting about colon surgery a couple of weeks ago (this unfiltered #ASL footage somehow included?), I have had a shocking amount of women- all with #cysticfibrosis- email describing their own problems with colon motility. ALL confessing the the same: a sluggish, slow, mucus-riddled colo-conundrum that no longer responds to any amount of surgical prep or prescription medications. They feel fearful of food, because every beautiful bite equates to hours of suffering. They practically wish for lung infections instead of intestinal warfare and DIOS, because sometimes dealing with the unmoveable feels worse. How are so many of us dealing with the same, yet feeling so alone? Recently, someone asked if I felt like adult life with CF (or in my case, CFTR related disease) is unknown, because patients now live longer. “It wasn't meant to be an adult disease”... Data can feel like uncharted territory. Despite this, after discussing my recent #surgery with a CFer today and finding ourselves in #grateful connected tears (“someone else gets it!”), the shared experience felt immeasurable. Knowing and learning and hoping, together.... THAT is why it’s worth it. I am #grateful for this platform and these humans. I am grateful for every single one of YOU taking the time to read this. Today, if you feel there are no more statistics or data or understanding to where your body is in life or where it can go in the future: remember, there is always someone out there hoping to #hope with you. I am grateful today, not hateful... because of you. Thank YOU... and here’s hoping.▪️#CatchingBreaths
"What happens at an audiology appointment?
When I was younger I used to be scared of these appointments because all the wires and gadgets scared me. Now I know it doesn’t hurt and I don’t worry so much!
To start the audiologist looks right into my ear canal to see if everything is okay. This time I have a build up of wax so I’m being referred to ENT to get it removed.
Next, it’s on to the headphones and clicker. Noises are played through the headphones with different frequency’s and decibels, all I have to do is click when I hear the sounds and it’s plotted onto a graph.
I then had a wire into my ear that which is a real ear measurer and links up to a machine that adjusts my aids to suit my ears perfectly.