When my city’s stay-at-home order when into effect on March 25, I was nervous about more than just COVID-19. As a chronically ill person, I was worried about the potential loss of medical care during the shutdown. My concern was heightened by the flurry of phone calls I received – two days before things closed – rescheduling all my upcoming appointments. During the first six months of the COVID-19 pandemic, I had one telehealth appointment and 12 in-office appointments. The […]
Category: Lupus
Quick Links
Lupus:
My 5 Year Lupus Diagnosis Anniversary.
Diagnosis Number Three: Lupus.
In the Depths of My Sickness with Lupus (and Learning to Put My Health First).
10 Things I Didn’t Realize Would Happen After I Was Diagnosed with Lupus.
Daily Living with Lupus (Guest Post).
A Day in the Life with Lupus.
The ABC’s of Lupus.
How Am I Supposed to Get Better When It Seems Like I’m Always Sick?
Healthcare & Medical Providers:
Signs That You Need a New Rheumatologist.
My 2018 Healthcare Costs with a Chronic Illness in the USA.
When Your Doctor Quits Unexpectedly.
What I’d Like to Say to My Medications.
Please Stop Telling Me to Take an Antidepressant for My Autoimmune Disease.
Lupus and Pregnancy: read all posts.
Lupus and Parenthood:
A Lupus Flare and a Teething Baby.
You can find my (more general) posts about chronic illness here.
Blog roll:
What I’m Struggling With During COVID-19 and Why I’m Thankful Anyway.
This isn’t exactly a well put together blog post where I convey a wealth of information. Those are my favorite kind to share, but I’ve been struggling to write one since March. Like many people during the time of COVID-19, I’m not in a great place mentally, physically, or emotionally. This post is more a catalog of what I’ve been struggling with over the past few months, with a few positives thrown in. I am trying to be thankful for […]
What I’d Like to Say to My Medications.
I am so tired of medications. I have taken hundreds of pills since my lupus diagnosis in 2017 and I’m sick of it. The sheer number of pills overwhelms me. They take up an entire drawer in my nightstand and fill up a good-sized box in my closet. I take 15 pills a day as a baseline – that number easily jumps into the 20s if I have a lupus flare or a high pain day. These medications have put […]
How Am I Supposed to Get Better When It Seems Like I’m Always Sick?
Trying to get better with a chronic illness is a long road filled with massive roadblocks. The symptoms of being sick are standing in the way of trying to recover. If you have a chronic illness or an autoimmune disease then you’ve likely wondered how on earth you’ll overcome the daunting obstacle of trying to get better when you feel miserable. And while we may be filled with hope and perseverance at the beginning of our journey, the years wear […]
Tablift – the Versatile and Comfortable Tablet Holder (Product Review).
How often do you find yourself uncomfortable while holding your tablet or another electronic device? Have you tried to precariously balance it on something while you rest? I struggled with these issues daily until I started using the Tablift – a bendy, adjustable tablet holder that was designed to help people use their electronic devices more easily and ergonomically. This nifty product may look a little bizarre with its spider like legs, but being able to adjust each leg independently […]
When Your Doctor Quits Unexpectedly.
I spent a week debating whether or not to send my rheumatologist a message about my increasing joint pain. While my finger and knee joints were aching badly, there wasn’t likely anything we could do about it via message. Ultimately, I decided to take prednisone a tad more liberally than usual to cope until my next appointment so I could discuss it in person with my doctor. A few days later, at the end of a particularly stressful weekend filled […]
Birth and Lupus: Baby Meena’s Birth Story.
Today Baby Meena is one year old. Yes, it has taken me a year to finish writing his birth story. I wrote down many details in the first two weeks, intending to get the story out much sooner, but I was somewhat traumatized from giving birth and had to stop reliving it in my mind for a while. Life was also really hard with a newborn as a parent with lupus. I have struggled mightily in all areas of my life […]
My 2018 Healthcare Costs with a Chronic Illness in the USA.
Healthcare costs in the USA are out of control – it’s something our nation discusses constantly – and I am joining the conversation by sharing real figures from my annual medical charges as a chronically ill person. And I’m starting with an outrageous one. My family’s total healthcare cost in 2018 was $73,123. Our portion of that bill was $20,018. The total cost is much higher than the median US salary (which sits around $44,500). It’s approximately half the cost of […]
100+ Relatable Signs of Chronic Illness.
For the past year or so I have been writing down my relatable signs of chronic illness every time one would pop into my head. The list steadily grew – to over 100 – until I finally felt ready to share it with the world. Some are funny, some are sad, and some are a bit specific to lupus or autoimmune diseases. Hopefully you’ll find at least a few to be relatable and feel a bit less alone on this chronic […]
A Lupus Flare and a Teething Baby.
For the first five months, my baby has been an easygoing, dream baby. He has slept 12 hours straight through the night almost every night since he was six weeks old. In fact, he slept so well that from week eight to 12 my husband had to wake him up at night to ensure he consumed enough milk overall (a newborn shouldn’t sleep for more than around four hours without eating). He is one of the happiest and sweetest babies […]