Life Changes Due to an Autoimmune Disorder Diagnosis
I started my blog years ago so I could write about my life, grow a support system online during a time I really needed it, and to share cool things with readers. Somehow, that gets lost along the way when your blog goes from something just a few friends read to a website visited by tens of thousands of people per month, and when you’re selling ads and making money from posts. It’s easy to get caught up in the business aspect and forget why you started. I feel like 2020 should have been the catalyst I needed to return to my roots, but it took facing a new autoimmune disorder diagnosis to bring me full circle.
2020 was, like most anyone will agree, a creep show. We couldn’t see our families and friends. Businesses closed down, jobs were lost, people got sick. People died. It was almost surreal, going from a “wow, did you see the news? This lockdown thing over a virus really could happen” to “how do we get toilet paper?” seemingly overnight. We went from fear about getting it to frustration over not being allowed to be in control of our own lives, to facing the fallout of over a year of being kept primarily in our homes. Just drive on the freeway for five minutes and you’ll suspect people even forgot how to drive.
During that time, many non-urgent things were put on hold. For me, one of them was my health. I didn’t see a doctor for a few things I should have, and by Christmas time, I was having a hard time getting up the stairs when it was cold out. My left knee would keep giving out and if someone touched my hips or knees, my reaction was unpleasant. And maybe a little rude. I brushed it off. I’d lost my job due to COVID, and with it, my Kaiser health insurance. We’d seamlessly switched to the husband’s EPO, but we hadn’t met any of the physicians. Suddenly needing to trust one of them was hard, and I waited until January of 2021 to finally make the long-overdue appointment for a physical, planning to address a list of things when May arrived.
Yes, May. Our choice of PCP providers has some great doctors, but making appointments and getting through to people on the phone is tough. I learned the hard way to follow-up within 24 hours if you’ve not heard back, because there are a lot of holes things fall through, and too often, I was told that their referral person was very backed up and it could take 2-4 weeks to hear back on an urgent referral.
More on that ridiculousness later.
When my physical date finally got near, I got the required lab tests run. I even peed in a cup. She was almost 30 minutes behind for my first-of-the-day appointment and even then, she went into someone else’s room first. It happens, so I figured I’d get enough time when my turn came. Instead, she seemed very much in a hurry so my questions were barely answered. I had to remind her that she’d run autoimmune tests because I’d complained about joint pain. “Oh, yes, well, you need to see a rheumatologist.” Then I was sent on my way with no answers and the hope I could get seen soon. (I realize the PCP cannot typically give an autoimmune disorder diagnosis, but interest and help is a good thing.)
I was lucky though. I found a couple of local doctors and the first one I called could see me the following week. The appointment was easy. The doctor checked my joints, did the basic listening and we talked at length about what my symptoms could mean. He ordered more labs and some x-rays and told me he’d call me the week after, when all the results had come in.
That call was so illuminating. Long story short, autoimmune diseases are tricky, and getting a new autoimmune diagnosis can throw you for a loop. While giving you some answers, it’s also confusing. What meds do I need to take? Will my insurance cover them? What kind of doctors do I need to see? How often? Will insurance cover them? How will the meds make me feel? Will I be able to continue my normal activity?
Then there are the harder questions. What contingency plans do I need? Can I still work? How will I handle the side effects? Who do I tell about my diagnosis? Do I even bother telling anyone outside of the immediate family? How will I handle those who just don’t care? How do I deal with someone who blows it off and isn’t interested in understanding why my life is different?
My doctor’s call was really extensive. He went through my x-ray results, my blood work and talked about possible diagnoses; in the end, he zeroed in on RA, or rheumatoid arthritis. It’s not ‘arthritis’, per se, but an autoimmune disorder. It’s a whole body issue that frequently manifests with joint pain. Some of us swell significantly. I’m lucky in that regard, only my knees swell a little. Joints aren’t always the same ones daily, but they are frequently symmetrical to a degree. I had it as a child and had hoped it would never return, yet here we are….
During the call, my rheumatologist offered me various medication options. I learned that I have to ‘fail’ on one of the old-time generic meds in order to have my insurance consider one of the newer biologics you see in tv commercials. Those meds are incredibly expensive and even after coverage, co-pays can be cost-prohibitive. For the first time in my life, I’m having to hope that my medication costs don’t get so unaffordable that I can’t actually purchase them. Isn’t it horrible that our health is a privilege, not a right? Pain-free living shouldn’t depend on my wallet, yet here we are…
Now I’m almost five weeks in on my new meds: methotrexate. They aren’t perfect. One day I ended up with my head in the toilet. Another few days, I’m eating ginger chews and hoping to not lose my lunch. I get a headache the day I take it. (I take it just one day a week.) Day 5 and 6, the pain returns. And the day I take it, I’m still in pain until the next morning. I’m hoping it builds up in my system enough that I don’t have breakthrough pain.
I also have to take folic acid to counteract some of the methotrexate side effects: hair loss, nausea, etc. Methotrexate is a type of chemo, simply put, though when prescribed for RA, the dose is way low. It’s a cheap med at least, and I am hoping that I find enough relief on it to not have to advance to something expensive. I will be talking to my doctor about nausea though, that’s a tough one to just get through and I’d like some Zofran on hand just in case.
Getting an autoimmune disorder diagnosis is both terrifying and relieving. Having hope for relief of pain is tempered with the idea that you can be putting your body through the wringer until you have a successful treatment program lined up. I’m thrilled that my methotrexate is helping, but not thrilled that I have to get blood tests run for my liver every few months, it not more frequently. One bad test and I could be starting over with a new med.
Then there’s the cost. RA meds are not inexpensive. My methotrexate is affordable, but I hear scary numbers in regards to Humira and other meds. If your insurance isn’t good, or you have minimal coverage through our lovely CoveredCA program, you could be facing the choice between paying a bill or staying on your med. Even with good insurance, it can be $100+ per month; out-of-pocket, no insurance, over $1000. This country values money more than health, and as I’m learning through this process, the United States says that healthcare is a privilege, not a right. I’ve called every representative I can, and not ONE has actually spoken to me about it beyond “I’m sorry about that, it’s the law.” Next! It’s abhorrent, but I’m not going to get political here.
An autoimmune disorder diagnosis means learning when to listen to my body. Resting when I need it. Going home early if it hurts too much to walk. Eating and drinking what’s good for my body instead of a cocktail and a fatty pile of nachos. I’m personally hating some of the lifestyle changes, including the inability to workout like I was, resulting in some flabbier portions of my body. Then there’s the weight gain and/or puffiness. A week or two on prednisone can make you look like you’re retaining water on par with a puffer fish face. So add demoralizing and confidence-draining to the list of side effects.
I’m also learning that discussing autoimmune issues with people who don’t have one is, well, almost non-existent. People aren’t interested for the most part. They don’t know what to say and they hear the “arthritis” part of RA and think about age. If you do need to tell someone, have that 20-second elevator pitch ready about how it’s a whole-body disease; you won’t get long before they’re uncomfortable and change the subject. Does this mean that some of us are telling the wrong people? Probably…and it means that some of us have the wrong people in our lives, too. Sad fact that diseases and other big issues bring to the forefront of your life.
However you process your autoimmune disorder diagnosis, give yourself a break. Pick and choose what you want to focus on and let some things go. I can’t take the dog for a walk very often, because she may tug and my knee will give out, so the husband’s doing that for now. I miss it, but I hope that, with the help of my wonderful rheumatologist, I’ll be able to do it again when my medication is stabilized.
Take a bath. Find a comfy seat and get some pillows to help prop up a limb or keep it from dangling. If you really want to be and make dinner, plan for it! Just maybe take something else off your plate. Know that if you push yourself, you may pay for it the next day…or longer. But find a way to still find happiness and be encouraged for less painful days ahead. Meditation helps me, though I don’t do it enough. I also like yoga, but I do have to pick and choose my poses.
And if you work, I have no legal advice or real recommendations. I am freelance and I work at home, so I work wherever I am most comfortable. Click the “blur” choice for your background and if you’re working from bed, it’s less noticeable.
I wish you well. I wish you luck. I wish you painfree days. (And if you want to hang out with others in the same boat, consider my Facebook group. It’s brand new, so there are only a handful of members. My goal is to curate it into a bigger group designed to provide support and resources for others facing new RA and other autoimmune disorders. I want it to be a space where I don’t have to remove much; basically, respect others and don’t hassle people over their V-accination status or treatment ideas. I’m pretty open-minded and want to let others be the same, because I believe we adults are smart enough to scroll past things that we don’t agree with without being unduly influenced. Thinking for ourselves is an underrated skill I know we’re capable of!)
Take care. And let me know how you are.
