Today is Rare Disease Day! The theme for this year is #ShowYourStripes, which I love because of its reference to the term “zebra”, which many of us with rare disorders call ourselves. This comes from the old phrase physicians turn to when dealing with patients; “when you hear hoofprints, think ‘horse’, not ‘zebra’.” This mindset (while reasonable) … Continue reading Rare Disease Day 2019
spoonie
Setting goals for 2019
It may seem a little silly for someone who struggles with a disability to "set goals". I think that for the most part, society expects disabled individuals to just sit at home and do nothing. They can't work. They can't do the same things neurotypical folks can do, so why would they focus on setting … Continue reading Setting goals for 2019
Late Night Confessions
It's going on 11pm. I've been contemplating sleep since 8. Rather than catching some sweet sweet "Z"s however, my mind is fixated on a regret I have, and now I feel the need to write about it so I can get this off my chest. I regret that I never reported one of my ex-bosses … Continue reading Late Night Confessions
My Disability Hearing
Yesterday was one of my most stressful days in a very long time, but it was also a day filled with the joy of relief that the hearing was over, no longer looming over my head with fears that I might somehow ruin everything I have been working for over the last year and a … Continue reading My Disability Hearing
Take a peek into my life (with pictures!)
I take for granted the fact that normally healthy people never really get to experience what it's like to manage a chronic illness, mainly because those of us who are chronically ill tend to hide our bad days. I don't want anyone to see me struggling- I'm afraid of worrying people, or looking like I'm … Continue reading Take a peek into my life (with pictures!)
Breakdown and a Revelation
I recently came to a revelation. I have known for a long time now that I am disabled, and because of this, I am unable to work. I tried to work twice, and both times, I had to quit because of my poor health. The second time, I wound up in the hospital and I … Continue reading Breakdown and a Revelation
Why I choose to fight ignorance with patience
I've been a chronic illness advocate for quite a while now, and along the way I have encountered a wide variety of folks from all different backgrounds and levels of understanding about what it's like to be chronically ill or to live with a disability. Along the way, I have made connections with other chronic … Continue reading Why I choose to fight ignorance with patience
Attention Parents with Disabilities:
Foster Moms and Dads- Can we talk about something kinda heavy really quick? I really want to adopt eventually. Justin does, too. We can’t have children of our own because my health is too poor for me to become pregnant. I love kids, and I think Justin and I will be excellent parents. The thing … Continue reading Attention Parents with Disabilities:
It has been an awesome day, and that sucks.
This is a throwback to an older article I wrote, titled "The guilt of feeling well". I wrote that a long while back, yet the topic is still quite relevant to me. Today, I had a really great day, energy-wise. I did so much, and as I sit here writing this, I still feel vital … Continue reading It has been an awesome day, and that sucks.
A quick rundown of my diagnoses / disabilities
Septo-Optic Dysplasia (SOD) Which caused: - Panhypopituitarism (PHP) I'm being treated for the following deficiencies caused by PHP: -Hypothyroidism-Hypogonadism-Adult Growth Hormone Deficiency-Secondary Adrenal Insufficiency - Optic Nerve Hypoplasia Causing partial blindness due to: -Bitemporal Hemianopsia (complete loss of peripheral vision)-Double Nystagmus (which moves at different speeds at different directions)-Overall low vision - Absence of Septum Pellucidum Here are … Continue reading A quick rundown of my diagnoses / disabilities
Insomnia Doodles 