A rare disease/condition is defined as a condition that effects less than 200,000 people (in the USA). There are more than 7000 rare diseases and conditions currently identified, with more being discovered daily. There are more than 350 million people in the world living with a rare disease or condition, with about 30 million of them living in the United States (which is about 10% of the population). Sadly, since so few people are impacted by each individual condition, most rare diseases do not have a single FDA approved treatment and patients (and doctors) are left grasping at straws to find ways of managing the condition. Because there are no treatments, many patients are literally left to die. (Information from Global Genes RARE Disease Facts page)
These are some of the reasons we have World Rare Disease Day.
My neck pain and headaches have been getting worse lately, and I noticed that they are significantly worse when I am upright for longer periods of time. I also started getting headaches that are either (or possibly both) occipital neuralgia or trigeminal neuralgia. After some research, I discovered that sometimes these symptoms can be due to craniocervical instability (CCI) which is common in people with connective tissue disorders. To see if CCI is causing any problems, they use an upright MRI.
I talked to my neurologist about it, and he agreed an upright MRI could show us something that my supine (flat on my back) MRI had not. He found a place nearby that did them, and filled out the orders for me.
Image of my upright MRI. This view is as if you were staring at my left ear (you can see my chin pointing towards the left of this image).
“Self-care” has really been a buzz word lately, hasn’t it? But, that’s for good reason, taking care of yourself really isn’t a luxury so much as it is a necessity. If you are at your wits end and have gotten to the point where you have started to “lose yourself” (you know, that moment when you say “wait, who am I anymore?!”) then you just can’t effectively serve/help/interact with the people around you!
Self-care can be as simple as locking the door when you shower so you won’t be interrupted, taking 15 minutes in the morning to enjoy your favorite beverage, or spending 5 minutes playing your favorite game on your phone while you wait for something to happen (like waiting for the kitchen timer to go off). It can also be extremely elaborate, like an entire spa day or going on a vacation (or daycation) by yourself!
These DIY aromatherapy bath bombs are somewhere in between the simple self-care and elaborate self-care. They feel extremely indulgent to use, but they only need about 20 minutes to assemble several of them and about a 20 minute bath to utilize them (though, I’ve found my baths last a tad longer when they feel this luxurious 😉 so, whatever you have time for). Continue reading
In the middle of December, my immune system decided to crash. It did this once, several years ago. The major difference is that back then, we had an obvious trigger, and this time it just happened. It’s now the last half of February, and I’ve been sick more than I’ve been okay. Tho, I was just healthy for two weeks prior to my current issue.
I write a bit more about it here: Rough Start to 2018
I am not using names for legal protection. While I want to scream this doctor’s name from the rooftops and tell everyone in the world to never ever go see this jerk, I know that if he finds it I could get sued for libel. Instead, I am writing this to educate and warn people that doctors like this exist, and as a form of therapy for myself to help me process this awful appointment.
I am also not using names in case this does end up in a legal case. During legal investigations and such, you’re not allowed to talk about the case, so I don’t want to cause any conflicts by having it published. Well, obviously my husband’s name appears in there because he was in the appointment and he is already not anonymous on this blog. Continue reading