I had a blood clot crisis in my legs during the summer of 2023. I flew 14 hours to Canada and back with active arthritis inflammation and upon my return, I went into medical distress on my flight.
Both flights resulted in rapidly swollen limbs and pitting edema that scared me and my family. I’m 49 years old (50 in two months) and never suspected a clot! I didn’t even know that my autoimmune diagnoses – Ankylosing Spondylitis and Psoriatic Arthritis – make me high risk for blood clots.
If my inflammation markers are high (CRP and ESR) then I should expect that my clotting markers are also going up. Since my inflammation markers are high all the time, I’m high risk for clots all the time.
At the hospital, I learned I have APS, an autoimmune blood clotting disorder that makes my blood sticky and puts me at risk of PE, heart attack, and stroke.
I was given daily blood thinners to inject for two months and sent home. Frankly I was shocked that they didn’t keep me at the hospital. Having done my own injections for four years, I guess they felt comfortable knowing I could inject myself, but I’ve never been so scared. My symptoms got really bad at night, especially pain and cramping. It’s never a good idea to Google things at 3am, by the way.
Thankfully, I’ve learned I’m not alone in how I felt with the aftermath of my clotting crisis.
Since my clotting crisis and APS diagnosis 15 months ago, I’ve realized every breath could be my last and I’ve made an uneasy peace with it.
Did you know that deep-vein thrombosis (DVT) occurs in approximately 1 in 1,000 individuals in the US?
It leads to more than 50,000 deaths each year in the US. On average, doctors miss a lower-limb DVT diagnosis 50% of the time! (That’s in patients that don’t have regular symptoms of DVT.) Source
“Unfortunately, missed diagnoses of PE are not rare. According to a recent study published in the British Medical Journal (BMJ), 26 percent of patients who go to their general practitioner with symptoms of a PE receive a delayed diagnosis of 7 days or more. This is dangerous because PEs are serious medical conditions that can be deadly if necessary treatment is not received.”Source
These stats are scary and ultimately, what it means is that EVEN WITH A BLOOD DISORDER that is characterized by blood clots, I still need to advocate hard for assistance with medical personnel.
In September 2024, I landed in ER again with a rapidly swelling leg that was very unusual compared to my arthritis symptoms. I had all the cardinal signs of a blood clot. The ER staff did not take my seriously. They didn’t even know what APS is. They told me I was hyperventilating and sent me home. I happened to film part of that experience and in the video, you can see I’m in a lot of distress. It’s not a panic attack.
I’m also quite sure that the aspirin I took before I went to ER and again when I got home is what helped me along with the emergency blood thinners I had on hand.
Why it’s important to learn the symptoms of blood clots!
When I saw my rheumy, he said I was right to go. He also mentioned that ER staff might not know what APS is and to specifically mention that I have a history with clots. We must educate others about clotting diseases and disorders. It can literally mean the difference between life and death.
There’s no way, in 2024, knowing what we know now about clotting and how prevalent it is, that we should be sent home. That’s why it’s so important to know the signs of clots. Patients like me are easily dismissed, especially women. My story is a common story and it has made me angry that I was dismissed so quickly.
Then I heard about my friend who lost her beautiful 24 year old daughter Meeka to Pulmonary Embolism.
Blood clots are preventable if we know the signs and we’re screening in advance and taking precautions.
Please make sure you know the signs and symptoms of blood clots.
Don’t assume doctors will know it when they see it.
The cardinal signs of clots are:
*Rapidly swollen limb that is hot to touch *Difficulty breathing *Tachycardia *Shortness of breath *Red or blue skin discoloration *Coughing up blood *Sweating, clammy or cold skin *Numbness and weakness *Difficulty speaking, slurring *Fainting, dizziness
And sometimes there are no warning signs at all!
I hope this message helps today.
At some point, I’m going to share the video of what I looked like in ER so you can see that I was presenting with all the cardinal symptoms of a clotting crisis. It’s vital that we learn the signs and symptoms of blood clots.
Don’t let anyone tell you it’s something else or dismiss your pain. Line the symptoms up with the list I’ve posted here and be sure to mention CLOTS if you’re in emergency.
I’m a chronically ill and disabled Canadian writer, patient advocate, international businesswoman, artist, and lifelong geek at heart.I lived in Taiwan for 23 years before repatriating to Canada at the end of 2025. My Several Worlds began as a travel and expat blog, but over the years it has grown with me through chronic illness, disability awareness, advocacy, business ownership, systems change, and the messy business of rebuilding a life when your body and the world around you do not always cooperate.I’ve lived several lives in one body. I built a massive international recruiting business called Reach To Teach Recruiting, became a professional writer and patient advocate, and somehow ended up as a chronically ill systems nerd who gets wildly excited about websites, healthcare policy, research rabbit holes, cats, and whatever is blooming in my garden.I’ve also modeled in Canada, China, and Taiwan, including one very memorable Discover Taipei cover involving a pineapple, which I still consider peak expat achievement.I’m a bit of a jack of all trades and a self-professed autodidact. I love art, flower arranging, reading — which is an understatement if you’ve seen my Goodreads profile. I have a special place in my heart for science, technology, law, health and medicine, history, disability policy, and culture.Animal videos make me cry. I hate cooking. You can find me nerding out at home most of the time due to being mostly housebound. If I'm not engaged in one of the activities listed above, I'm probably building websites.Check my About page to learn why I’m taking you on this journey with me through My Several Worlds.
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