We've had a lot going on lately.
We're facing a lot of things that have arisen unexpectedly.
This week we spent some time in the ER, had several doctor visits, have been to numerous pharmacies on the hunt for some much needed medication, and I've had to take some time off work.
Things have been stressful and exhausting.
But such is the life of a quadriplegic and his wife.
When we showed up in the ER earlier in the week, I had my game face on. I knew that the staff wasn't going to be prepared for us - that we would have to politely educate them on the unique problems of a paralyzed guy. We've been through this a couple times now, and it's a pretty delicate dance. You have to be firm enough to make it clear that you know what you're talking about. But not so arrogant as to insult the professionals.
The thing is, when we went to the ER, we knew what the problem was. We needed the doctor to partner with us and provide us an effective course of treatment. Most people who go to the ER have no idea what is wrong with them, and they rely on the doctors and nurses to 1) figure it out, then 2) fix it.
When we told the ER doctor Jeff's problem (which I'm not going to detail here - I have to allow my husband some sort of privacy), the doctor literally laughed. Then he choked out the words, "What do you want me to do about it?"
What I wanted was to punch him in the groin, but that's another story.
We told the doctor about the extreme bouts of autonomic dysreflexia (AD) Jeff was having. How we know of other paralyzed individuals who have had the same problem and ended up having seizures from the sudden and dangerous increase in blood pressure. How we are hoping that medication will help us instead of a surgical route.
The doctor left the room briefly then came back and suddenly showed more interest in our case. Like he actually believed us rather than thinking we were some patients fresh off crazy street. While he was out of the room, he probably googled autonomic dysreflexia to refresh his memory on a condition he had only encountered in the text of a medical book during his long-ago days of medical school (I'm not being a smart ass here - most doctors are not familiar with AD if they don't regularly work with people with spinal cord injuries).
So he was willing to work with us to come up with a medical regimen to help control the symptoms Jeff is having. He needed to examine Jeff, which meant we needed the help of four staff members to transfer Jeff from his chair to the ER bed. (This is precisely why we went straight to the ER rather than urgent care or a specialist's office. It is IMPOSSIBLE to get Jeff safely onto one of those tiny exam tables in a regular doctor's office.) Before the transfer, I went to the car and got our second ventilator so I could put Jeff onto that one once he was on the bed. ERs don't have respiratory therapists just hanging around to assist with ventilator management, so I got to play that role too.
Honestly, at this point I don't mind having to play all these roles. Because I'm confident that I can handle my husband's care. I do, however, know that I can't do it all alone, and I need help in situations like this. I no longer have any problem telling medical professionals the necessary steps to safely transfer Jeff. Because if we aren't in a facility where people work with SCIs on a regular basis, they need a SCI wife to call the shots in some circumstances. And I need them to make sure it's all done safely.
Looking back to when Jeff was first injured, I remember being so scared at first, wondering how in the world I would ever remember everything it took to safely get Jeff from the bed to the chair. From one room to another, even. I remember feeling like I was living in a dream when I first had to write the word quadriplegic on a form I was filling out regarding Jeff's condition. I remember the first time I had to answer the question "Are you disabled?" on another form I was filling out for Jeff, and I automatically checked the No box. I had to ask for another form and start over. I remember the first few times people would ask me if Jeff would ever "get better" from his injury. If he would ever regain any sensation and movement in his body. I would say something like, "Well we certainly hope he will." Now I answer the question honestly. I shake my head, and quietly say, "No. Probably not." Then I smile slightly and nod my head to indicate, yes that sucks, but we've decided to keep living our life despite this crazy turn of events.
It's truly amazing to see how we've progressed from a couple years ago.
We were out of the ER within a few hours, happy we didn't have to stay overnight or be admitted to the hospital.
But we're still dealing with some scary side effects of a spinal cord injury. We're going down a path right now where the timeline isn't quite clear.
And sometimes not being able to see the horizon is a frightening and stressful ordeal.
But we'll make it. We will.
We somehow always do.
Me and my Loves - a couple days before the ER visit.