If you’ve been following me for a while, you know that I have various autoimmune diseases and my body thinks it’s cute to reject medicine and treatments (ugh). I’ve been suffering with these diseases for almost five years now and I still don’t have a concrete medication regimen, haven’t found a treatment that actually works and honestly, I still don’t really know what lupus is, nor do I think I ever will. Although I have a lot more to learn, and I have a long way to go, here are a few things I’ve learned since being diagnosed:
The thing about autoimmune diseases is that you never really understand them. Everything your doctor says will go in one ear and out the other, and then when you go home and Google everything he/she diagnosed you with, you’ll find yourself more confused than when you started. You’ll probably also go on WebMD and re-diagnose yourself with something totally different and off the wall. (To elaborate, I have the WebMD app on my phone and I had a headache today and searched possible diagnoses for headaches and discovered it could be a brain tumor, hemorrhage or blood clot… it’s an addicting, terrible habit). I digress. It’s been nearly five years since my first diagnosis and I still have no idea what anything means.
You’ll change medications at least once, twice, three times (you get it…). Autoimmune diseases are tricky, especially when your body begins rejecting any medicine you put in your mouth. When you’re first diagnosed, you have to accept that those pills aren’t the same ones you’ll be on for the rest of your life. It just isn’t that way with autoimmune diseases. I can’t even tell you how many times I’ve changed medicines, doses, treatments, etc.
You’ll be called a “doctor shopper” for seeking second and third opinions on your condition(s). It’s your body, you just want to be absolutely positive your doctor’s tests were correct before beginning treatment, right? I mean, it’s nothing personal. But when you walk into the third doctor’s office for another opinion on your condition and prescribed medications, you have to be prepared to get called out for it.
You’ll learn to love listening to the music they play when you’re on hold with various doctor’s offices and/or insurance companies. I’ll admit, I still don’t like the music they play over the phone. However, I don’t complain about it anymore, or groan when they announce, “I’m just going to put you on hold for a second. Thank you!” (Side note: “a second” is equivalent to 20 minutes in secretary terms).
Along the same lines, you’ll also learn to love speaking to various doctors, secretaries, operators and the ever-so-dreaded insurance companies. Being sick with autoimmunities, you’re going to speak with a lot of different people whether you want to or not. Some of them will be rude, some will ask you for your name twelve times during the same phone call, they’ll put you on hold and then forget about you, and a lot of them won’t offer you any sympathy. But hey, they’re just doing their jobs.
These are some of the things I’ve picked up over the years. And yesterday as I was sitting at the hospital for three hours (yes three hours), I thought about how long I’ve been living with these diseases and how much they’ve taught me. At my appointment, my doctors reviewed my test results with me and basically everything I listed above happened to me.
The bad news?
My body isn’t responding well to my medications at all right now. The medication I’m on right now is the last form of oral medication to treat my condition, and since it isn’t working, my doctors are prescribing a new drip line treatment, which I’ll have to go into the hospital every two weeks for a few hours for the rest of my life. Bluntly put by my doctor: It doesn’t get better, it just stabilizes at this condition.
Also, since I’ll be traveling a lot in these next few months, I won’t be able to start this drip line treatment until late November. What does that mean for my health? I have no idea.
The good news?
My medicines aren’t causing me to lose my eyesight, as we had feared! My eyes are just bad because well, everyone in my family has poor eyesight.
I got my new insurance cards so I don’t have to pay for everything out of pocket anymore! (Huge YIPPEE)
I haven’t decided if this is a happy or a sad post, but I hope this helps you better understand what’s going on in my life health-wise. If you’re in a similar condition or have tips or insight into autoimmunities or lupus, or other incurable diseases, please let me in on your wealth of knowledge!