Professional patient days
Today was one of those professional patient days – when you have to spend time getting medical care specifically because you have a chronic illness. It’s much different from acute care, but I’ve never talked about why. By the time I got home today, I wanted to crawl under the covers and hide. I actually did for about five minutes until Katie Beth brought me a cup of coffee.
I don’t think I could ever really explain it to you. In a way it’s like “the gloves need to come off.” If I wrote about how some days are with this disease or the ways people react to it, those not “blessed with Rheumatoid disease,” as some patients say, would likely be upset. But they are the ones who need to hear this story. The gloves should come off now and then, or they will never hear the truth.
Hour after hour and irrational knees
When I got out of bed, my knees didn’t straighten. And, it used to take an hour of sitting with them bent to hurt this bad. Looking like a person twice my age, I dragged myself to the bathroom to wash up and get dressed for an appointment with Dr. Good GP. One reason doc is good is appreciation for keeping patients (me) as well as possible. And that was the reason for this appointment. I wanted to get some preventive care before I start another treatment for the Rheumatoid, and doc agreed: a new TB test, some vaccinations, and some blood work.
I waited over an hour, but that happens often and the patients don’t seem to mind because the staff are caring. I always waited 90 minutes to see Dr. KBC, my first rheumatologist, but that was different because the appointment was spent talking about the doc’s family, problems, or philosophies… This morning we sat in an outer hallway since the waiting room was crowded. Sitting on low park benches, Katie Beth worked on her laptop and I answered comments on the iPad.
When the nurse called me back, I got up from the low seat expecting to follow behind her. But my knees only straightened halfway. None of my joints ever move normally anymore, but sometimes it’s bad enough to surprise even me. I heard myself apologizing as KB picked up some of my stuff. I could feel eyes staring on the way through the office but I was more worried about not falling.
The nurse did a long interview to update background stuff. Doc loves EHRs and is fully computerized. No, I never smoked. Healthy family history. How much do you exercise? I would love to…
Finally, the doc. “Are you doing better?” (When I am any better, the whole world will hear from me quickly.)
“No, I’m the same. Gets a little worse slowly over time.”
Doc looks at KB, “Does she get worse?” KB has no idea what to say. Watching her squirm, I suddenly realize I’ve trained her in the same stoicism and minimizing that I do. The gloves never come off. For years, she’s watched me be able to do less every month than the month before and I’ve watched it break her heart. But she can’t think of a thing to say.
I alternate the gentle hold on my wrists and my fingers because they hurt. I gaze down at my slightly crooked, but unswollen toes. I can’t move any joint in my body normally, but I have no way to show that to the doc. Doc looks puzzled. “How well can you sleep?” I sleep very well. “But are you energetic…?” doc laughs. My fever is climbing, but I don’t mention it.
Previous times I’ve tried to explain the Rheumatoid symptoms. But not this time. Head cocked to one side, doc looks puzzled. I can see the doc that I’ve known for years struggle to decide whether there can possibly be anything wrong with the joints of a woman who just looks tired, not swollen this morning. A struggle because doc knows me as a smart, sensible, together woman – who doesn’t always look sick. But says she is. There’s more, but I can’t quite get the gloves all the way off.
I love this doc for helping me when I needed it. For never saying out loud the doubts I know are there.
But I want to be believed and understood. There is bursitis, tendonitis, and synovitis all over my body. And just the words “all over my body” sound irrational. But, it’s the disease that’s irrational.
Doc looks away as I struggle to stand and go down the hall for my shot. The knees straighten partially.
Every movement I make is difficult because of stiffness, weakness, or limited range of motion. Just because I don’t cry out doesn’t mean I’m not in pain. Could you cry out all day long? If the pain never leaves, you have to learn to tolerate it, and that’s what we do.
I hardly ever say a thing about symptoms that are always there. Because I know they sound ridiculous. Can anyone else see the irony in people thinking we exaggerate symptoms that are so much worse than we say?
I’d like to hear from some caregivers that have dealt with trying to understand us when have to hide so much of it to try to not sound crazy.
I left the office with caring people who just can’t comprehend what this disease is like to go to the lab at the hospital where they don’t seem to care about making so many errors in just our few visits. They lost my son’s anti-CCP test, disposed of my urine sample because they misspelled my name on it (delaying antibiotics for a serious infection), and failed to perform or read my bone scan properly. But that’s not why we dislike the lab there. We dislike the lab because even though I’m nice, they’re rude and physically rough.
But there are few options for labs and this is next door to the doc. Let’s get these fasting labs over because it’s 11 o’clock and we’re starving.
The highchair. “Can you sit all the way back?” No, I’m sorry. I know that irritates them, but there is no way to do it and my blood can be taken from my huge healthy veins even if I don’t try to force my hips and knees back in the high chair.
Down comes the bar across the front, forcing my shoulder up. “Can’t you straighten this elbow more? Lift this shoulder higher.” Smiling quietly, I take deep breaths. The tourniquet tight above the shot… but that’s okay it will be over quickly.
“I don’t feel so good,” the room got dark. I’ve only fainted once and it was giving blood.
“That’s why we tell you to sit back in the chair!”
KB says she’s worried and loudly requested someone bring juice. I hadn’t noticed there were so many vials.
In a couple minutes, I’m walking with bent knees to a dirty bathroom for a urine sample. Using pieces of paper towel, I touch nothing. But still wash my hands at the employee sink – there is not one in the bathroom.
We are overcomers
My knees have calmed down tonight – as long as I’m lying down. My ankle and my toes are nagging. My neck and shoulders are loudly crunching every few seconds. I have to stop and rest my fingers every few minutes because they ache. My elbows just plain hurt. My eyes are burning-itching-stinging all the time. There’s been an unexplained rash on my leg for a year. Sometimes my heart beats hard and my blood pressure soars.
We live with many symptoms that for most people with Rheumatoid disease, never leave completely. But we rise above it all day long and talk about other things most of the time. We’re not over-focusing on the disease; it’s focused all its effort on destroying us. We’re constantly overcoming it.
The doc just doesn’t know.
I wish everyone, including my doctor understood more, but most GP’s don’t know much about Rheumatoid disease. I tell my kids all the time: You don’t understand. And thank God you don’t. I don’t really need anyone to know how bad it is – just to believe me if I say so. As I’ve said before, I’ve lived on both sides of this fence, so I know.
Tomorrow is another professional patient day. After I pick up my labs, I’m headed to talk to Dr. Tylenol, who I didn’t plan to see again. It’s sadder when it’s a rheumatologist who doesn’t understand, but I’ll smile and get through it.
Postblog: This is the longest post I’ve ever written and I hope some of you made it all the way to the end. It seemed like a good way to try to capture for you a few hours of being in my place.
Edit 9:02: Tiny edit to juice sentence because KB reminds me that she repeatedly demanded juice. I was unsure since was losing consciousness at the lab and she was asleep last night when I wrote the blog.