I need to write about this, because it’s constantly weighing on my mind and I need to try to decompress.
So, I went to see my rheumatologist on Thursday, March 7th, and he wasn’t very thorough, or even all that nice. I spent that day kind of in a super depressed state, but by that evening yanked myself out of it and went into action mode (mostly thanks to my mom, who started looking through our health insurance website for another rheumatologist). I called first thing in the morning, but ended up in some weird answering service loop. I had to go to work, so ran out of time, but when I got home I called my GP’s office.
I got their after-hours answering machine, which was weird because it wasn’t quite 4:00 and they don’t close ’til five on Fridays. But I decided to call them first thing in the morning on Monday, mostly because my foot was still swollen and I really wanted someone to look at it. Dr. T, the rheumatologist, hadn’t so much as asked me to take off my socks.
I called my GP’s office first thing on Monday, March 11th. They squeezed me in for an appointment at noon with my PA, who I’ve been seeing for the last four or so years. She’s been really great and was the one who figured out that this seemingly crazy set of symptoms is something autoimmune. I always feel better after seeing her, even if I don’t physically feel better, if that makes sense. Unfortunately, when I arrived at the office, the receptionist informed me that there was a glitch in their scheduling and my PA wasn’t available. Since I was already there and had a sort of pressing issue, she asked if I would mind seeing the RN instead.
I was a little worried, because I’d have to explain the last six years of my health all over again — as if I were seeing a completely new doctor — before I could even show her my foot, and I had to be at work for 2pm. But I really wanted someone to look at my foot, so I said it was fine (even though I felt like a mess on the inside).
I’ve learned that it’s very important to be calm when seeing any healthcare practitioner. I’ve developed a bit of anxiety in the last six years, because I’ve dealt with all kinds of so-called professionals who treated me like a liar or crazy person, so I’m always really nervous when seeing someone new. But the RN who bounced in immediately put me at ease. She sort of reminded me of my high school self: kind of goth, with laced-up knee-high boots. She patiently listened to me, pulled up my previous blood work, and agreed that Dr. T hadn’t been very thorough. She looked at my feet and asked me some questions that no one had ever asked me before, and I’d never thought to mention to anyone, because they seemed stupid and unrelated to my autoimmune issues.
- Are your feet always cold?
- Do you always complain your cold when no one else is?
- Do you feel like you pee a lot?
I answered “yes” to each question, but also told her that sometimes I have a hard time peeing. (In the past, I’ve had UTI-like symptoms… but urinalyses for bacteria usually come back normal.) She also asked me about the swelling. I told her it’s always just where my joint is, and sometimes it gets a little red, and I usually swell on and off throughout the day or flareup, in various joints. (For example, my knuckles, wrists, the base of my thumb, my ankles, etc.) I told her this was the first time I’ve been swollen to the point where it was really interfering with my life, and that I was having trouble walking.
She said all of my symptoms and past fluctuating blood work sounded like Lupus, and I agreed, and told her that Dr. M — the general practitioner my PA works under — thought it might be Lupus four or so years ago, which was why I started seeing various rheumatologists. The RN then explained that with Lupus, the disease starts attacking the kidneys, which causes extra protein to build up, which causes swelling. She said she would do a urinalysis right there in the office to check the levels of protein in my urine.
Fortunately, I really had to pee. Unfortunately, I know entirely too much about kidney diseases because my five-year-old godson has glomerulonephritis, and possibly other kidney diseases, which caused him to lose one kidney and he has continued to lose function in the remaining one. My best friend and I have seen firsthand what kidney disease can do. But in that moment, all I could think about was peeing and whether I’d be out of the office in time for work.
When I came back, a nurse dipped my urine right in front of me, and then the RN came in and read it after a few minutes. She said there was a small amount of protein in my urine, and then asked if I’ve ever had blood work while I had swelling. I wasn’t sure, because I’ve had so much blood work done in the last six years. She then asked if I could go get the blood work done immediately, because she wanted to check my kidney function.
I got a doctor’s note and immediately went to the blood work lab across town.
I’m still waiting on the results (and am hoping they’ll call me tomorrow with them). I’ve done a bit of research, because I’m like a moth drawn to light and can’t help myself. I’m in a support group on Facebook for people with Lupus, since that’s what it seems like I have, and several people have posted about kidney issues and Lupus nephritis. From the research I did, Lupus nephritis is pretty common in people with Lupus, and is actually now one of the ways doctors are diagnosing Lupus, believe it or not. (Lupus nephritis, by the way, is a kidney disease caused by the immune system attacking the kidneys. In autoimmune diseases, the body can’t tell healthy tissues from unhealthy tissues, and attacks itself. Lupus is notorious for kidney involvement.)
As nice as it would be to have a diagnosis, I’m freaked the fuck out. However, it would explain everything, so I’m not sure how to feel. All I can do is wait… and if you know me, you know I’m not the most patient person. I want to know now, dammit, so I can stop freaking out. I’m kind of scared, to be honest, and just want to know.