My friend, Sara (obviously not her real name), called me out of the blue today after not hearing from her in almost a year. We were able to catch up on things pretty quickly and, as she spoke, I found myself jotting things down with every flag that waved in front of me. From those notes, I’ve put together a scenario that I want to share here:
Me: “How are things?”
Sara: “Oh, things are okay, I guess. The kids are driving me crazy and I am more than ready for them to be back in school. They just wear me out – and it doesn’t take much anymore. We really aren’t doing anything fun or going anywhere this summer mainly because we’re stressing about money. We stay in the house most of the time because, even with sunscreen, we’re burning so easily. “
Sara lets go a deep, resigning sigh and continues:
“[Jon] is working his tail off and I’m still putting in my 30-35 hours a week, but I’ve come down with two colds or sinus infections that lasted for at least two weeks each. My boss had the nerve to pull me aside after the second time I called in sick. He couldn’t understand why I was getting sick with colds in the summer – “that’s a winter problem”, he said. He went on about how [another girl in her office] still comes in even when she is having a hard time with allergies – [she mimics him] “which is basically the same thing as a cold“. Then he had the gall to say to me sarcastically: ”Maybe you’re not happy with working here.“ “ (I won’t put in what she called her boss here, but you can imagine)
Me: “What did you tell him?”
Sara: “Why bother? If he isn’t sick, he could care less…forget about getting any compassion. I’ve called in two more times including today – I’m at the mechanics, today, okay? Last Thursday, I told him I couldn’t get anyone to watch the kids. Pretty lame excuses, but I don’t care if he sees through it – I just am too tired to care.”
Me: “How are you doing now?”
Sara: “I don’t know what is going on with me lately. I can barely make it through the day because I am dead tired. I ache all over and sometimes don’t even want to move. I’ll start out the day with a killer headache and by evening my feet are swollen, my fingers are numb or my joints ache worse. I had a tough time with the sinus infection – my mouth was raw with sores and my ribs hurt something fierce. It just keeps coming…a few days ago I found a weird sore on my arm that isn’t going away, I’m obviously forgetting to drink because I never pee anymore and I have absolutely no appetite. Well, that’s okay ’cause I’m losing weight. With all of this, I’m suppose to still cart the kids around and [Jon] is pissed at me lately because I don’t want t go to stupid barbeques- GOD! I’m just wore out!”
Me: “You sound wore out, sweetie.”
Sara: “I’m sorry. I must sound like a bitchy, old woman – I need to get it off my chest, though. I guess I just want someone to hear me and get a break. [scream] I’ll shut up now. Okay, enough about me, what have you been up to?”
Me: “Oh, the same as you…”
Now, the truth is, Sara doesn’t have lupus. I am guessing that she is just overloading herself once again because, like many of us with lupus, she is an over-achiever, ‘Type A’ , control freak. By tomorrow, all of this will be in the past for her- the lucky stiff. However, it is important to note that she mentioned several of the Eleven Criteria used to diagnose someone with lupus and the common symptoms .
This post is for those of you who don’t have lupus, but suspect you might. What is very important for you to understand is that lupus is a disease that mimics and is often minimized because of it. No matter how insignificant things might seem or how scared you are to face your concerns, you owe it to yourself to find out what’s really going on. To do nothing can, and often does, lead to serious organ involvement and you really don’t want that. If you are experiencing symptoms like Sara or have some of the other criteria that she didn’t mention, the best way to get your doctor’s attention is to journal.
The things your medical team will be looking for, echoed in blogs, websites and support group conversations everywhere, are signs that you are being responsible and informed about your own health. These criteria are merely guidelines – trust your instincts. I, personally, didn’t have most of the criteria to warn me and learned of having lupus only after my kidneys nearly failed. I knew something wasn’t right, but chose to ignore it for a couple of years.
Track your symptoms and be very specific by using quantities, not just quality - document your meals, weight & appetite, sleep patterns, energy levels, lost work hours due to health, hydration, hours spent exercising (BIG ITEM, folks), pain locations, ‘weird’ stuff that comes and goes (or doesn’t go), etc.
In addition, be sure to note your actions taken to address your symptoms – changes in diet, exercise, sleep, etc. Show your medical team that you are being pro-active in your own self care. Basically, you need to do a lot of prep work before your 15-minutes in the medical spotlight.
Make your appointment work for you by taking your health seriously- if you aren’t being heard, exercise your consumer/human rights and go to someone who will listen. If, after everything including lab work is done, and it turns out that you are simply going through what Sara is going through – great. At that point, count your blessings and take better care of yourself starting today. If labs look fine and there isn’t anything conclusive, yet your symptoms persist – keep on tracking and go in for the whole routine again. There is no one test for lupus and timing is everything - you have to play this lottery to ‘win’ a diagnosis, so stay in the game.
By the end of our talk, I told my friend that she sounds a lot like someone who is just starting out with lupus. She was silent for a minute – scared, I imagine, since she knows what I ‘ve been through. Then, I heard her chuckle slightly:
Sara: “Nah, I’m sure its nothing – I can handle it.”
Me: “Yep, that sounds like someone with lupus, too.”
