Today marks 10 years since I got sick and didn’t get better. I have a lot of complicated feelings about the whole thing. 10 years ago today I felt a weird tingling and numb sensation radiating from my wrist to my elbow, and shortly after that it turned into joint pain. In the years that followed, each of my joints systematically became affected until I was completely disabled.
It’s been a long, exhausting journey—physically, mentally, and emotionally. I’ve been on Plaquenil and Prednisone for three months now. My disease is now under control; before I came down with the flu, I walked a whole mile—and didn’t pay for it. I walked a little over a quarter of a mile today. My plan was to walk the full mile over to Sandy’s, but she got sneaky and intercepted me. Still, it felt really good to walk—even though my anxiety was being an asshole and I was honest to goodness convinced that I was going to get hit by a car and die the entire time I was walking. 😂
I have Undifferentiated Connective Tissue Disease. Since being diagnosed in December, I’ve done some reading. My disease could go one of three ways: it could go completely into remission, never to return; it could stay UCTD, which would be manageable with my current treatment plan; it could become Lupus, a whole new ball game. Funny enough, I don’t worry so much about it being pre-Lupus anymore or sticking around, because Plaquenil has changed my life and as long as I can keep my health insurance, I’ll be okay. I do worry about losing my health insurance, though, because there’s no way I could afford these medications out of pocket, and no health insurance company would cover me under the Republican’s proposed replacement for the ACA. Without the ACA, I will be disabled again. Period.
Right now, though, I’m extremely grateful for my rheumatologist and the treatment plan he has me on. I’ve had few side effects from Plaquenil, and they’re definitely tolerable compared to debilitating joint pain, fatigue, and my other UCTD symptoms. Illnesses like the flu will trigger flareups, but they fade when I recover. In this moment, I have a happy ending—something I honestly hadn’t dared to hope for.
My plan right now is to keep taking my medication for as long as I can, and fight to keep my health insurance. For me and so many others, the ACA is the difference between life and death; being bedridden and writhing in agony is not living. Lately I’ve been living more than I have in the last 10 years, and I’ll go down swinging to keep it that way.
If I’ve gotten nothing else out of this whole autoimmune disease gig, it’s that living with one is fucking weird. I have Undifferentiated Connective Tissue Disease (UCTD). Basically, my immune system is confused and is attacking my connective tissues: joints, skin, tendons, etc. My UCTD could be pre-Lupus, pre-RA, or something else entirely. Right now my rheumatologist is treating it as UCTD with Prednisone and Plaquenil.
Many autoimmune diseases are completely invisible. On the outside, I might not look sick—especially on a good day. With makeup, I can mask the fatigue under my eyes. Unless I’m wearing my wrist braces or using my cane, you might not even notice that I’m in pain. I’ve gotten really good at hiding my discomfort (unless it hits that 8/10 level that I just can’t tolerate).
Then there are the completely weird-ass symptoms. My main symptoms are joint pain and fatigue, both of which can be debilitating. Thankfully, my new medications have stopped my current flareup. However, I’ve got the flu again, which has aggravated another symptom which is usually no big deal.
You know how when you’ve got really bad sunburn or a burned yourself while cooking? Or, for those of us with tattoos, that feeling after several layers of color? It’s a raw pain on your skin that is aggravated when you touch it or when something—like your clothing—brushes up against it. I get patches of skin that feel burnt, but nothing is there and I haven’t hurt myself or been out in the sun.
Usually, these “patches” are no big deal; they go away in a couple of hours or a day at the most. They’re often super small areas, too, so it’s easy to avoid irritating them and ignore them. With this flu, though, most of my body feels this way. The flu and illnesses in general tend to aggravate my UCTD, but this is completely new to me. Usually it’s the joint pain that gets out of control. I also find it kind of odd that the Plaquenil isn’t suppressing this.
It’s weird symptoms like this that keep autoimmune patients on our toes.
As if that’s not all bad enough, most of the time our doctors don’t even know what to do with us. I’ve had physicians suggest I see a psychiatrist, ask me what I want them to do for me, flat out tell me there’s nothing they can do… The list goes on. When you have cancer, you see an oncologist; there’s no such thing as an autoimmune disease specialist, which is a damned shame, because there are a lot of us and very few physicians who can effectively diagnose and treat us.
Thankfully, I wound up with Dr. S, who’s been amazing. If he ever leaves the practice, I’m going with him—even if I have to follow him to the North Pole. It’s that hard to find a good doctor who can roll with the punches of an autoimmune disease; doctors don’t like medical mysteries, because they’re not cut and dry. Hell, I don’t like them either.
Autoimmune diseases are just plain weird, and living with them is weird. Still, I keep on trucking, because I’m too stubborn to lie down and quit. I’m not too stubborn, though, to lie down and rest once in a while.
Do you have a rare disease? What are some weird things about it? Let’s commiserate in the comments below. ♥
Last Thursday, I was not in a good place. I felt utterly mortified, wavering between defeat and anger. I knew that I needed to find another primary care provider, but the way my APRN said “If you see another doctor or get another prescription, I’ll get another letter and I won’t prescribe the Tramadol anymore” made me feel like if I transferred to another practice, I’d still just end up looking bad. I hadn’t actually done anything wrong, but I felt like I had, and I felt like I didn’t have any other choice.
Her words kept replaying in my head: “I’ll get another letter,” as if she was trying to threaten me. Had she really been concerned about my being dependent on painkillers, she would have asked me questions about my use, trying to get to the bottom of her concerns and helping her patient. But healthcare practitioners are not trained in substance abuse, save for a small segment. Nor are they trained in pain management. So, when faced with chronic pain patients like me or patients who are struggling with substance abuse, they don’t know what to do with us. And when they’re prejudiced by ageism, sexism, and ableism like my APRN—who made up her mind about me the very moment she saw my youthful, feminine face—they can’t be bothered at all.
And hey, maybe she really does mean well, but I have a hard time believing it when she consistently dismisses all of my concerns during our appointments, yet is attentive, involved, and jumps into action whenever she sees my husband. I’ve sat in on his appointments. I’ve seen the differences in treatment with my own eyes. The other day, while checking out, the elderly woman behind me praised the same APRN who’d just all but flat out accused me of lying. At this point, I can only conclude that she treats me the way she does because of how I look: like an able-bodied teen girl.
So yes, I call it like I see it: ageism, sexism, and ableism. And I’m so sick of it, I could breathe fire.
I didn’t feel as if I could have such a productive conversation with my APRN. She has been dismissive of me since my first appointment with her, and even when I repeat my questions or point out facts, she completely ignores me. Whereas, with my rheumatologist, even when he disagreed that I have an autoimmune disease, he was still willing to listen, to take the time to answer my questions. I’ve never gotten that impression from my APRN.
Besides, I needed to state facts and lay things out, which would take longer than a five-minute conversation with the front end staff. They’re very busy, and likely wouldn’t have time to sit on the phone with me while I rattle off dates and details, nor could I be sure that the message would be relayed properly. I also felt super anxious, and wasn’t sure that I could speak without getting upset all over again.
I felt stuck. Even if I transferred to another doctor in the same health network, I would just look like the drug shopping liar she accused me of being. I wasn’t sure that the next doctor would be willing to refill my prescription and, even though at this point the Plaquenil is starting to work, I do still need pain relief. For my own peace of mind, I also need to know that, should the pain get bad again, I can get the medicine I need in order to get through my days and nights.
“I’ll get another letter,” she’d told me. While venting to Sandy, it dawned on me: she would get another letter, because I was going to send one to her.
Even though I wrote it in the security of my own home, I felt my anxiety mounting with each word. As patients, we’re conditioned to go with whatever the doctor tells us because they have the medical degree, not us. As chronic pain patients, we’re even more inclined to roll with it because we’re grateful to be treated at all—especially women, who are often stigmatized as being dramatic or drug-seeking. Autoimmune diseases are documented as being difficult to diagnose and treat; what works for one patient often won’t work for another with the exact same condition, because every person’s immune system is different. When you’re fighting an autoimmune disease, you’re fighting your own body, a complex and adaptive machine that scientists and doctors still don’t completely understand. So, when you’re not even very familiar with your own disease, it’s absolutely daunting to stand up to a healthcare practitioner and say “You’re wrong”—even when they are very clearly wrong, as my APRN was.
In my three-page letter, I stated dates that I’d been seen along with the unprofessional things that she’s said to me. I explained that I had come to her first, that because she’d brushed me off, I’d had no choice but to go to the ER when it hadn’t improved a week later. I ended my letter invoking my right as a patient to see the office MD from here on out.
After I put my letter in the mailbox, my anxiety only increased and I kept questioning myself, telling myself that I’d made a mistake, that I should just rip it up and deal with things the way they were. I always feel bad for standing up for myself. Maybe, if I’d just outright said to her “It’s not okay for you to joke about my age and condition” from the very beginning, or “I would like to try Flexeril” when she brushed off my Advil questions, it wouldn’t have come to me laying it all out in a three-page letter.
Women are conditioned to believe that if we speak up for ourselves, we’re inconveniencing someone. We’re accused of complaining, of being a bitch. But I had to advocate for myself and my healthcare, because if I don’t, no one else will.
So, I mailed out my letter. Despite my damned phone anxiety, I plan on calling in a few days to follow up and make sure that they got it. Then I’ll make sure my next appointment is with the MD who replaced my retired doctor, and hopefully s/he will be much more attentive, compassionate, and knowledgeable. I’ve seen dozens of doctors over the last decade, and so few of them are. It’s a damned shame, because it impedes healthcare and also ruins patients’ faith in doctors. I know it sure as hell has killed mine.
I’m getting better at advocating for myself, though. Even if I’m too shocked to defend myself in person, I can always call later when my anxiety calms, or write a letter when my anger fades. Speaking of, I also wrote a letter of complaint to the hospital about the way the ER attending and some of the staff treated me. In the past year, since getting my voice back, I’ve become less afraid to speak up for myself and others. It’s never easy, but it’s always worth it.