A doctor told me my baby likely had Caffey disease when he was only eight hours old. We had to wait on genetic testing to confirm it, but the rare disease was already causing my son severe pain. Somewhere around 3 in 1,000 infants are diagnosed with Caffey disease globally, although many are likely undiagnosed because the bone manifestations are minor and go unnoticed. But some babies can have bones that double to triple in width. The doctors told me […]
My 5 Year Lupus Diagnosis Anniversary.
Today marks five years since a doctor confirmed my lupus diagnosis. In early January of 2017, he told me he suspected lupus and when I returned three weeks later the blood work confirmed it. Technically, he called it “pre-lupus”, but I later developed more symptoms and he dropped the “pre” part of the diagnosis. So, happy diagnosiversary to me! Every January I am acutely aware that another year had passed, and this five year marker is hitting a little differently. […]
2021 Yearly Digest
Having kicked off the new year with a fresh health crisis (is there any other way to do it?), here I am with my better-late-than-never 2021 digest. Looking back over the past year can be bittersweet when you live with chronic illnesses. This year was even tougher as I struggled emotionally and physically with what my children went through medically. However, it helps me remember what I’ve overcome so far as I face a new year. I spent much of […]
My Third Trimester: Hobbling Along and Delivering Early.
My third trimester started off a bit stressful. At 28 weeks, I failed my one-hour gestational diabetes test. I was stressed about possibly having yet another health complication during pregnancy. I then had to endure a three-hour-long glucose test which I passed, thank goodness! But the stress of my third trimester was only getting started; I have a lot to share with you about what happened over those nine weeks! Yep, if you’re counting along that means my son was […]
My Pain Needs Privacy.
Recently, I spent three and a half hours in my OB’s office for a second gestational diabetes screening. It was a long appointment and something I wasn’t totally equipped to handle at the time due to my pain levels, but it was necessary. So after the first hour, I asked to lie down in an exam room to help me cope with my pain. Lying down helped with my SPD pain (from pregnancy) and my neck pain, but the most […]
My Second Trimester: I’m Not Having a Good Time!
My second trimester was hard at the beginning and the end, but I had a few sweet days somewhere in the middle. There weren’t nearly as many good days compared to the honeymoon phase of my first pregnancy. Like many other moms, I’ve found my second pregnancy to be harder overall. Related: The First Trimester With My Second Baby. It’s been tougher because of more severe and frequent pregnancy symptoms on top of taking care of a toddler while pregnant. […]
Please Stop Telling Me to Take an Antidepressant for My Autoimmune Disease.
How many doctors have told you to take an antidepressant for your chronic pain? My number is around seven, and most of them stated it was my only option for pain management. This was generally done in a matter-of-fact manner, not a compassionate, I-care-about-what-is-wrong-with-you approach. But what if my pain is caused by something that needs to be treated another way? Shouldn’t we look further into this? My health is not something to be dismissed or treated with a one […]
The First Trimester With My Second Baby.
We’re expecting a second little Meena in June 2021! This first trimester has been quite different compared to my previous pregnancy – and not just because I’m taking care of a two-year-old while pregnant. My medical care has gone a bit differently and I’ve had more varied and intense symptoms. Thankfully, my lupus hasn’t been as intense – so far – and I have a lot of help. In this post, I’m going to detail what it’s been like to […]
2020 Yearly Digest.
This year was not one I have been eager to reflect on. I had to force myself to start the process of reviewing 2020 for my annual digest. But, once I got started I was rather surprised to remember how many positive things did happen this year. Writing this digest is always a therapeutic process. There’s not a big trip to share, but we did find smaller ways to travel and enjoy time together. So much time together. It was […]
My Experiences Going to the Doctor During COVID-19.
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 […]