February 3, 2020
I’m going to be honest about what I’m sharing today. It’s something I’ve hoped to avoid. I thought I could just sweep it under the rug and that it would go away, but things like this don’t go away. It’s part of our story. I’ve been hesitating, because I thought by now we’d have an ending. We don’t, what we do have is knowledge to move forward.
Here’s our story.
This brings me back to 2017, and really earlier than that if we are getting technical, 2012 to be exact. I was a new mom with a 2 month old when my husband had a random blood clot in his leg caused by a rare autoimmune disease he never had, called antiphospholipid syndrome. Like most MDs do with no explanation he handed us a print out about this condition and a prescription to take blood thinners for the rest of his life. I was 25, a new mom, and postpartum is a real thing friends. I’m pretty sure I threw that generic print out away like we all blindly throw away those flu shot papers, or any other paper we get from a physician.
It’s now 2017 the year that literally shook me to my core. The start of something that I didn’t know would imprint such an impactful journey on my heart.
My husband had “pneumonia” over 40 times that year and on. We spent countless hours in medical offices, ER visits, and even a biopsy of his lungs to try to determine what was happening to him. No one could figure it out. Our local pulmonologist said “this is just how it’s going to be.
I refused to believe this was an answer. No explanation isn’t an answer, period! It wasn’t until his primary care doctor suggested we see a pulmonologist at Duke University.
I remember that first 4 ½ hour drive to see our doctor. I was hoping with all my heart that it wouldn’t be a wasted trip like so many others we’d had previously trekked.
A few things resonated with me at this appointment. Big things! Things that create movement. Things you can’t help but stop and think, because you don’t have another option.
He told us autoimmune disease is environmental. Honestly, most of you already know this, but I didn’t. Out of all the years, why? Why hadn’t anyone else mentioned this to us?
Why were we given a generic piece of paper years prior explaining a complex disease in a nonchalant way?
He said it could be caused by anything from an antibiotic, a shot, the ingredients in our products we consume and apply to our bodies daily. After all these years why hadn’t we been told this? Why hadn’t we been told this from the beginning?
I left that appointment desperate for answers. What was so important about our ingredients? After doing some research I feel betrayed by the lack of regulations we have in our country, because I trusted them. We all did. I’m also disheartened that we don’t start this conversation sooner before we have a problem, or that we just start the conversation at all.
Who knows what caused this autoimmune disease, that’s beside the point. The point is a veil has been lifted from my eyes to see beyond the phrase “this is how it is”.
Dustin never had pneumonia. He had blood in his lungs causing him to have those symptoms. Which was caused by his autoimmune disease antiphospholipid syndrome. If you’re reading this and you have antiphospholipid syndrome please know you are not alone. You are not crazy, this condition is more than just a blood clotting disorder. We were unfortunately never told that until now.
I’m writing this with tears in my eyes while I’m sitting on a plane, because there’s something wrong with the fact that in 2019 it’s “normal” to have an autoimmune disease, because “that’s the way it is”. It’s “normal” to have infertility, because “that’s the way it is”. It’s “normal” to have breast cancer, or any kind of cancer at 30 years of age, because “That’s how it is”. I refuse to believe that, because there’s too much prevention evidence showing me different.
I don’t have all the answers. Moving forward, what I do have is an experience. An experience we didn’t ask for, but one that’s been given to us. I choose to rise from it.
If Isaiah 61:1 could be our anthem. That verse reminds me of our story and that is what we will do.
In the future I plan on posting educational toxin free living posts mixed in with my photography. I also have a toxin free living educational group on Facebook. This is a place where I share valuable content about clean living to reduce our daily body burdens. Click here to join my toxin free living group.
If you are new to APS and you stumbled on my post hoping for an answer, or just someone like you that you can connect with. Don’t hesitate to contact me. We would love to connect with you, because you are not alone.
Our story is on going and ever evolving. As we don’t have all the answers now. We are definitely moving in a positive direction. As we find more answers and treatments that work I’ll share them with you in hopes that someone somewhere will find it too.
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Praying for u all. I hate so bad that u all have had to go through that. I pray Dustin can feel better soon . I know all to well how an autoimune disease can effect your life and mind. I dont have the same one as dustin but i do have one and alot of dr.s around hear didnt even know how to treat me at first . They told me to even go to Vanderbilt but I finally got a dr. And some answers after some surgery and meds. I do know that on our side of family ,Mammaws side that certain blood types rh- are thier and some people have different types of autoimune stuff . It does take years to find good dr.s and different types of meds to work. Hope the best and wish the best for you all. Love Torrie and family.
Thank you so much Torrie! He is doing much better, slow progress is better than none. We are extremely thankful for our doctors at Duke. They have been a tremendous help!
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