I need to write.
I have so many thoughts circulating and so many memories drifting out of range and so many photos I’d like to share. I feel heavy with it. I’m not sure what will come out when I start… most likely the heaviest things first. They tend to come first.
Probably my uncle Glen and our family’s health are heaviest for me right now. Then there’s stuff like homeschooling and parenting and special needs and fun adventures and crafting and the rest of life.
I’ve been a little blue lately…
My uncle Glen had a tiny piece of metal fly into his head through his eye socket a few weeks ago. That would have been bad, but it also hit his carotid artery, causing catastrophic bleeding in his brain. So we’re waiting to see if he can wake up and if he does, how much he can wake up. I’m just heavy with loved memories of Glen and grief of imminent loss. The family has been amazing in caring for him and staying by his side all these days on end in the ICU. Please pray for his life partner Geneva and his siblings and mama especially?
Health….
Brian has polycystic kidney disease. Did you know that? It’s starting to cause issues… the cysts in his kidneys are getting larger, uncomfortable, and are increasing his blood pressure. Eventually, they’ll compromise his kidney function and probably cause more pain. He’ll probably need dialysis and eventually kidney transplant someday. And this makes me sad. We’ve been able to ignore it for many years, but it’s beginning to be a present issue, instead of a future one. Brian also has some unknown GI issue… he’s lost some weight (didn’t need to) and has had constant gut issues for over two years now. He’s gluten free and dairy free and low salt, without a great deal of improvement, poor man. Wish I knew what was wrong and how to make it better.
I have been having troubling symptoms with my joints and increasing levels of chronic pain and “brain fog” that have limited my activities and capacity. Last week, I was diagnosed with Hypermobile type Ehlers Danlos Syndrome or hEDS. (Long description and short description) It’s a connective tissue disorder that for me… means painful partial dislocations, chronic headaches (sometimes severe and with accompanying nausea), chronic fatigue, and being easily injured. People with a variety of EDS types refer to themselves as “zebras”, because it (connective tissue disorder) causes many comorbidities over time, or “new stripes.” So far, I have only identified and been diagnosed with dysautonomia/POTS, which causes low blood pressure issues (like not being able to bend over and stand up without being careful of near-fainting and nausea), fatigue, and brain fog. Oh, and headaches. For some people, these are progressive… and each of my flares has been progressive so far and that scares me. Some people have to use wheelchairs sometimes and the chronic pain and fatigue are not fun.
This has been familiar to me for many years, but now I have a diagnosis that explains why I have so few “spoons.”
Jordan… needs a low priority follow-up echocardiogram. I’d skip it entirely, but it’s past due. But he has to be sedated to do it. And that means coordinating all his other sedated stuff for the same time. And doctors try to be nice and easy to coordinate with, but they aren’t. He’ll need dental care, bloodwork, ear wax cleanout, and echo. And then there’s the sedation bit where they have trouble keeping him in the bed and don’t let me go back to the OR with him, even though it really is in his best interest for me to do that. ABA is going well and I’m excited about that.
Daniel’s got stuff to schedule – follow-ups for Cardiology, Nephrology and Endocrinology. And a big long trip in the spring to Delaware for treatment of his feet.
Maggie appears to have the same connective tissue disorder as me. I’d take her in to be diagnosed and have treatment guidance, but there actually aren’t doctors that work with people like us around here. The one doctor in Portland that worked with EDS patients has a 3 year wait list and just closed her wait list. Soooooo, that makes it much harder. Not sure where/when/if we’ll go.
I’m just tired. So tired. My number one goal lately has been to manage stress well and to reduce stress. Because it exacerbates everything that’s challenging.
So I’m cooking simpler, being kind to myself inside my head, resting when possible, and trying to craft and get outdoors, because all those things breathe life to me.
That’s all for now. I’m planning to post pictures of the kids and the LIFE happening in our family soon. Maybe later this morning. Jordan’s calling and I want to wear something besides pajamas today.