04/03/2022
I tend, lately, to keep much of the struggles in our house -- particularly about my health -- private.
Some of that is because facing what I do on a daily basis can be disheartening, and I want to spread humor, positivity, and Homesteading Success Tips through here. There's enough depressing mess on Facebook without me spilling into it, too.
Another large reason for that is, well, if I talk about this stuff, it seems more "real", and then I have to wrap my already busy brain around dealing with it. And also, it's often so much to type out that I feel overwhelmed, and unsure of where exactly to start. Or how to explain what _I_ understand about the mechanisms and implications of a terrifying and unstoppable illness to many people who may not understand that.
Anyway, today I am going to try to update on the most recent major issue. Feel free to ask questions if you need, and I'll do my best to respond.
Last year, I had an echocardiogram to check up on the damage from my heart attack in 2017. The read-out of it was rather unclear to me, and listed several issues going on which looked rather scary. The cardiologist never called me back to explain the results or the impact those issues would have on my daily life. I slowed things down, stopped using my elliptical, limited my trips up and down the stairs, and tried to keep my heart rate generally steady. Over the last year, my lung function has dropped precipitously from the high 50% region in July 2021 to 32% in January of this year. No explanation why. My lungs just do not work.
I saw a new cardiologist in January. He did not like the way the previous echo was transcribed, nor did he appreciate that it wasn't a stress echo. Two weeks ago, I went in to have the newly ordered Stress Echo done. Last week, I had the follow-up where he explained to me what's going on.
The Lupus has reached my heart.
There's an entire artery feeding into the left front side of my heart that closes completely when my heart rate escalates above 120 bpm. It acts like the heart of someone with bad cholesterol for decades -- except there's no cholesterol there. His solution was to do a heart catheterization and place a stent at the collapse point. He's called it Lupus-driven Ischemic Heart Disease.
On Thursday, I had the cath procedure done. Except -- they found nothing. So they didn't place any stent. There's no collapse, no blockage, my arteries are totally clear. And my heart _looks_ healthy.
Which brings us to now. Lupus is a monster. It destroys, and kills, with no regard for human life at all. We don't know why my heart is losing blood... only that it is. So, for now, we keep my heart rate steady below 100 bpm while we figure things out. I am ordered to keep my stress to a minimum, and my activity to "necessary". My lung function is likely tied to my heart not moving blood properly. So avoiding smoke and masks is necessary right now.
Over the next week, I am not allowed to use my right arm to lift anything. Cooking, cleaning,laundry, routine things are not permitted while the hole they opened in my artery closes itself back up. And I am, of course, extra tired and at higher risk of a Lupus flare from the medications they pumped into me for the procedure. We are doing what we can to detox and mitigate inflammation.
How can you help? Well, if you asked that... there are a host of ways.
1)Pray. We know the Lord and all He can do. Storm Heaven for us.
2)Come sit in my chaos with me. Bring your kids to play with/occupy/distract my kids, and just be a presence in our mess.
3)If you want to pitch in and help with chores, feel free. My kiddos are amazing humans who have learned very well how to do most of our chores around the house, but many hands still make light work, and we've got a full garden to get built and planted. We're gonna need tree-hole diggers the Sunday after Easter. We need a coop bought and built so these birds move out of my West Wing. We will never say "No" to good help.
4)Bring in a meal. I hate asking that because there are 6 of us, kosher, one gluten-free and on strict AIP, and another allergic to sugar. Food is expensive, Y'all, and I recognize that. But if you feel led to do it, we'll welcome it and won't say a word but "Thank You" about it.
5) Money. That one's hard, too. Come May, the Homestead Store is going to be focusing a big push on Lupus Awareness. (May is Lupus Awareness month, so.....) Since July of last year, we've spent over $10K on appointments and treatments for me to get my Lupus under control. The echo I just had is going to be roughly $700 out of pocket, and the cath procedure is expected to be $4000 after insurance. This is not cheap, and it's affecting every other area of our lives. If it weren't for my health, our house would have gotten beautiful doors last summer instead of the industrial (and hung upside down) ones we have now. My work room would have flooring instead of plywood subfloor. We'd have 13 raised beds full of dirt and a nice coop right now. So, I guess, if praying just doesn't feel like enough, you don't cook, you're not close enough to come sit with me or help with chores, but you feel led by the Holy Spirit to do _something_, well... there's another practical way you can.
We love all of you. Bless you if you got all the way to the end of that mess. ❤️
