You have to respect the Lupus!
In the grand scheme of things, getting the diagnosis of systemic lupus was relatively easy. Those 5-6 months of weird symptoms and endless tests and doctors were indeed a nightmare, but I’ve read there are so many living like this for years before getting a diagnosis. Years. I can’t even wrap my brain around that. I spent much of those 5-6 months thinking this illness was in my head, and after many doctors said there was nothing wrong with me, it was a relief to finally meet my rheumatologist who assured me I was indeed, not imagining this.
That said, when I was diagnosed, I was 26, had been married for less than 6 months, and was just 2 years into my fulfilling and demanding career as a pediatric registered nurse. This chronic illness did not fit nicely into my master plan of being Domestic Goddess, Wife of the Year, Super Nurse, going back to school to be a Nurse Practitioner, and still being my fun-loving-silly-life-of-the-party self having fun with my friends. Nope, this lupus was not going to get the best of me.
For the past four years, I’ve refused to really acknowledge my illness. Yes, I take my meds (OK, there are times I would stop taking them just to “see” what would happen. Not pretty, my friends. Not pretty), I get my bloodwork, I see my doctors. But when my body was screaming at me to slow down, my stubborn self would just plow right through it. I make jokes to laugh it off, figuring I should make fun of my rashes and puffy steroid face before anyone else does (although, sometimes you just HAVE to laugh! It’s one of the best ways to cope). While working full-time and switching back and forth between day and night shift, I enrolled in an intensive fast-track BSN program, sometimes taking 3 classes at a time. I had to get my certification for Pediatric Certified Nurse (wouldn’t a few more initials after my name be fun?), and I became a nurse for the Sexual Assault Response Team at my hospital, having to be on-call a few nights a month on top of my full-time schedule. Because it all sounded like a great idea, right?
And then there’s the social life. What’s the best way to forget about your chronic illness? Why going out and drinking with your friends, of course! I reveled when people would say “Marla, I don’t know how you do it! Look how nothing has changed! You’re still the crazy girl we love!” When I look back and see how much I time and effort I spent ignoring what was going on in my body, AND drinking so much to forget about it, it really makes me sad. I thought acting like nothing had to change was my way of kicking lupus butt. I’ve got lupus, but it doesn’t have me!!!!!!!!!!! Yeah, right.
The more I pushed lupus out of my life, the more it raged on. When I felt rundown, exhausted, joints swollen and achy, I pushed on even more. Covered in rashes? Well, cover them up with makeup! There was a lot of hiding things and pushing in opposite directions. If I didn’t show signs of weakness, surely lupus would move on to someone who did. Who’s the big winner?
About 7-8 months ago, I went for a check-up with my cardiologist for my heart defect. I had an echocardiogram, and it showed a big change from the echo about 6 months prior. A big change. Moderate aortic regurgitation. To go from none to moderate in less than 6 months seems pretty concerning. Was this due to my heart defect or was the lupus affecting it? My cardiologist was convinced it was due to lupus, because aortic regurgitation is not normally seen with the heart defect I was born with, tetralogy of Fallot. I went through 6 months of chemo infusions (working full-time), hoping this would help. It didn’t. Lupus was kicking me and my Super Woman invincible attitudes’ ass. And I was doing nothing but allowing it to.
In February, I saw my rheumatologist for my 3 month check-up. We went over my labs, my echo, and just my overall clinical appearance. Again, not good. Hubby was with me for the first time since I was diagnosed (which is another post for another day…) and she spent over an hour and a half with us. Seriously, not many doctors will do that anymore. We covered all the bases, her concern with how I was getting worse, my stubbornness, and her disdain for my working in an ICU full-time and switching back and forth between day and night shift. She looked at me and said, “Marla, you have to respect the Lupus!”
In four years, that’s the best advice I’ve gotten. I never made the connection between my Super Woman mentality, my lifestyle, and the decline in my health. I’m the only one that can take ownership, and I only have myself to blame that it took me this long to come to terms with everything. And that’s where the much needed big changes are finally coming in.
In May, I’m taking a month-long leave of absence from work to start a new medication, with hopes that taking this time will actually allow the medication to do it’s job. When I return to work, it will be on a part-time basis, and I will only work day shift. In nursing, there is always overtime to pick up on other floors or per diem shifts at other hospitals. But I will only take on extra time if I am feeling good. I am blessed that Hubby has a job where we can do so. It’s going to be tight, but we will make it work.
I’ve realized I have limits. On days when my body is telling me to stay in bed and not run errands that I probably don’t need to do anyway, it’s ok. If my friends are doing something fun, but I’m not at my best, it’s ok to miss it. Who am I really keeping appearances up for, anyway? The truth is, I am sick. I can’t hide it anymore.
I also need to eat more healthy. Taco Bell was a huge problem before lupus (nacho bell grandes are my weakness… and the new doritos locos taco… must. have. taco. bell.) but I can’t expect to feel good while putting crap in my body. I’ve always made jokes that I weigh 105lbs but I have the cholesterol of a 300lb man. You know what? A cholesterol that high is not funny. I need to change that number drastically. I’ve been incorporating fruits and veggies into my diet more than ever. And honestly… Not. So. Bad.
My number one priority is getting my health back. I know I may never have the same energy and spunk I had before all of this, but I can damn well try. I will respect the lupus, and hopefully in return, it will start to respect me.