As I read others’ stories of their hydrocephalus journey, or meet others with my condition I realize how this condition is different for everyone. When one lives through and with a chronic illness one tends to get stuck in their own mire. I must recognize that I’m not having multiple brain surgeries per year, every year, and my headaches are well controlled. That might not always be the case, but currently I feel grateful and blessed.
Category / Blog
February 28 is Rare Disease Day
A shout out to all of us who deal with #hydrocephalus. Although hydrocephalus isn’t a disease, it’s still rare. Thank you #Neurosurgery for keeping us alive. #RareDiseaseDay #RareDiseaseDay2022
Vertigo & Nausea
Two days before Thanksgiving I had a bout of dizziness. The world wasn’t spinning, but my usually poor balance was off kilter. I dismissed it as a one-day ailment.
One week later I’m visiting my sister in Seattle I awake the second morning and the room is spinning counter-clockwise. I’ve not drunk any alcohol to cause this. Definitely a neurological problem.😵💫 The dizziness also returns with nausea and stays full-on for about five days.
Returning home I convince my neurosurgeon’s nurse that something isn’t right. The last time I felt like this I was on a slow boat to shunt failure. After a shunt series and a CT scan they can find nothing wrong with the function of hardware in my brain.🧠
Three weeks into this adventure I now feel like I’m being blown over by a strong wind. I call make an appointment with my neurologist, but can’t get an appointment until June. 😐
Fortunately, the symptoms subside before Christmas and I’m confident enough to leave the proximity of my medical team to visit my out-of-town in-laws. The visit was medically uneventful, and my largest worry was my kitten hiding permanently under their couch. 🛋 It did add some humor to an otherwise stressful month.
- I need see my neurosurgeon only yearly.
- I’ve been given the all-clear until 2022.
- I don’t get seizures (any more)
- My current shunt is five years old.
The World is on Pause
I have been too. Although I’ve now been vaccinated for Covid-19,I’ve temporarily lost my sense of adventure. In my mind I’m planning two cruises, in reality I sit at home with the Pandemic Cat.
Meet Leopold, the six-month-old Maine Coon Kitten. Currently weighs 10+ pounds, expected to be up to three times that weight when full grown. I must keep up the weight training.🏋️♀️
Outlining Your Novel – How to plan your story.
(I loved this post I found.)
I recently tweeted a picture that showed the process I am using to outline my new novel. There were a number of replies which generally fell into two categories: That is mental, you are mental #PantsersRuleTheWorld Interesting, I might give it a try. Of course, we all love to write and the more time you […]Outlining Your Novel – How to plan your story.
Staying at Home
With a worldwide pandemic and racial riots it’s been a good time to stay home. I’ve been out of the house only a handful of time since mid march. I’ve cancelled a trip to Hawaii, a trip to Houston and a trip to England. Another casualty was a cruise to celebrate my fiftieth birthday. Many have spoken about cancelling 2020, does that mean I can cancel my fiftieth birthday? In 2021 can I claim to still be forty nine? One good thing that’s come out if staying at home, I’m exercising more. It really does help mitigate anxiety by keeping to a regular schedule.
Dealing with COVID-19
Headaches are better than Brain Surgery.
I got a Keurig coffee-maker for Christmas and I love it. However, there is a dire lacking of decaffeinated K-Cups.🤔
As someone who regularly gets headaches and migraines, do I add to those with all the delicious, but caffeinated k-cup varieties? Absolutely!
Afterwards, I must put the Keurig away for a week and return to drinking water.
Hydrocephalus Research Needed!
A (protracted) post from a hydro-mom, Olivia is a teenager!! She’s had as many brain surgeries as I’ve had years of life. #NOMOREBS
“Olivia’s going into surgery shortly.
This will be number 50. Let that sink in a moment. We need better technology, more research, a cure. Olivia has missed most of this semester at school. We need to do better.”