I returned a hot mess. After a week of what I believed was worst hangover ever, I turned to my primary care doctor. After my exam, she suggested I see a rheumatologist. I can’t remember asking her why. I trusted her, so I went.
Man, rheumatologists take a LOT of blood.
By the time I went in for my follow-up, I’d convinced myself my diagnosis would be extreme laziness.
After all, I’d just changed careers. Moving from a relatively stressful corporate job to a lot less stressful “freelancer” status totally fit Diagnosis Lazy. My daughter had just turned one. Aren’t all new 35-year old moms tired?
Although I was in great shape when I got pregnant, I still had some baby weight to lose. I hadn’t returned to my go-to running and boot camp workouts because frankly, I never felt up to it. I figured my energy would return as soon as I quit breastfeeding, though I had stopped two months prior. I figured being out-of-shape had made me lazy.
And, as someone who had suffered from bouts of depression, I knew it could bring about physical manifestations like joint pain and headaches. Lazy and depressed. Diagnosed. Done and done.
Instead, with a dopey grin on my face, I listened as the rheumatologist used alien terms like autoimmune disorders, genetic markers, antinuclear antibody, systemic lupus erythematosus, and antiphospholipid syndrome. As he outlined how my symptoms aligned with these crazy words, my “lazy theory” grew weaker and weaker.
I had no explanation for the dang blood tests and the fevers.
Since then, I’ve seen more doctors than I care to count. An entirely new me could be built with all the blood they’ve removed from my body. I’ve had MRIs, lung function tests, and electrocardiograms. I’ve been shocked (literally). Put on steroids. Experienced steroid withdrawal. Cognitively monitored.
And my story is nothing compared to a lot of lupus patients.
I don’t want to mislead you. I still can’t say for certain that I have lupus. What we know for sure is that I have antiphospholipid antibodies in my blood, Sjogren’s Syndrome, and undifferentiated connective tissue disorder. My organs have not been affected. Diagnostically, I’m in lupus limbo.
Knowing there are so many people who are much sicker than me does make me leery about blogging on this topic. That’s why I see my role here as facilitator. I’ll share first. Hopefully as this community grows, more people in Colorado will want to talk openly about a disease that remains hush-hush. I encourage your comments and welcome your stories. Chronic illness can be isolating. Right now, someone needs to hear your story.
What you can expect from this blog
- Lupus Colorado’s website has all the information you need—from facts and figures to diagnosis and treatment to stories of other people in our state who have lupus.
- The purpose of this blog is to focus on real life stuff. Stuff like:
- How our lives have changed for the better.
- Why it’s so hard to admit your life has changed.
- When to tell someone you have lupus.
- What it’s like to live in the sunniest state and have a disease that forces you indoors.
- How to talk to the people in your life about chronic illness.
- Services around Denver that make asking for help a little bit easier.
- Tips for caring for a rambunctious 2-year-old mid-flare (I could really use some advice on this topic!).
- Where to go when you can’t get health insurance.
- Lessons we’ve learned the hard way.
- Companies that let you work from home or take a mid-day nap.
- Great vacation spots in Colorado.
- How to get started with an exercise plan.
- Foods that make us feel better.
- Stuff that makes us laugh.
I plan to post weekly, though don’t have a set schedule. I’ll make every attempt at brevity—this will likely be my longest post. And above all, let’s keep this positive and supportive.
Now, indulge me. What would you like to talk about on this blog?