In early 2023, about a year after I shared my son’s story of Caffey disease, I heard from another parent going through the same thing for the first time. Krystyna contacted me after reading my article and shared her son’s story with me. Our boys have many similarities and I was able to offer some comfort to her by sharing an update of how well my son’s legs had recovered since the first impact of Caffey disease. Her son was […]
Category: Chronic Illness
Life with lupus:
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.
A Day in the Life with Lupus.
The ABC’s of Lupus.
Signs That You Need a New Rheumatologist.
Read all my posts about lupus here.
Life with chronic illness:
100+ Relatable Signs of Chronic Illness.
My 2018 Healthcare Costs with a Chronic Illness in the USA.
How Am I Supposed to Get Better When It Seems Like I’m Always Sick?
What I’d Like to Say to My Medications.
Please Stop Telling Me to Take an Antidepressant for My Autoimmune Disease.
My Pain Needs Privacy.
Pregnancy & Parenthood:
My Lupus Pregnancy: The First Trimester.
The Second Trimester of Being Pregnant with Lupus.
Lupus and Pregnancy in the Third Trimester.
Birth and Lupus: Baby Meena’s Birth Story.
A Lupus Flare and a Teething Baby.
Tips for living with chronic illness:
Tips for Cooking with Chronic Pain.
Using Hemp Based CBD Oil for Chronic Pain (Product Review).
Tablift – the Versatile and Comfortable Tablet Holder (Product Review).
The positive side of chronic illness:
On Being Thankful for My Spouse as a Chronic Illness Sufferer.
What Chronic Illness Has Given Me.
The negative side of chronic illness:
When Your Doctor Quits Unexpectedly.
The Dangers of High Blood Pressure.
When Your Spouse Is Also Your Caregiver (+ Tips for Easing the Burden).
The Chronic Disappointment of Chronic Illness.
The Unfortunate Realities of Life with Chronic Illness(es).
What You Don’t See in My Travel Photos.
The Mental Strain of a Chronic Illness.
Me vs. Medication.
Blog Roll:
Interview: Discovering Caffey Disease in a Bulgarian Infant.
In early 2022, I shared the story of my youngest son’s journey with Caffey disease. One of my biggest takeaways from our experience was that I felt alone; after his diagnosis I searched desperately for another parent’s personal experience, but I only found scientific papers and medical briefings to read. Several months later, I told my husband I never wanted another parent to have to go through this process alone. I started writing our story to put out into the […]
Having a Lip Biopsy for Sjögren’s? My Detailed Experience.
Living a seronegative life isn’t always the most pleasant for those of us with autoimmune diseases. Instead of having our symptoms justified by positive bloodwork, we have to rely on a slew of other diagnostic methods to be taken seriously by many doctors and insurance policies. Around five years after my onset of dry eye disease – and a change in medications for my autoimmune disease – I began to experience dry mouth. Once I had both types of dryness, […]
Living in burnout.
“You’ve burned through all your serotonin.” In one sentence, my therapist captured it all. She summarized the burdens of my life that were heavy and numerous. Too heavy. They weighed on me and sometimes felt like they were taking away my options. I was going through a deep level of burnout. Most importantly, she emphasized that it wasn’t my fault. Instead, she explained the scenario – that she has seen far too often – where my brain had essentially burned […]
Did you notice?
Have you noticed how a chronic illness affects a friend or family member? It might impact them in ways that are hard to see sometimes.
Celebrating Lupus Awareness Month + a New Lupus Coffee Mug.
There’s a few more weeks until Lupus Awareness Month starts and I always look forward to sharing articles, stories, and photos about my life with lupus. This year I’m celebrating lupus awareness in a new way by sharing a product that I created: the lupus strong coffee mug. I’m posting ahead of time so that you can add one to your cupboard (or win one!) if you’d like to use it for spreading lupus awareness in May. This coffee cup […]
My Baby Has Caffey Disease: Our Story and Rare Disease Awareness.
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. […]
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 […]