Stupid Things Physicians Say

I spend long hours perfecting the art of whining about physicians. It's a hobby of sorts. But I recently realized that healthy people have no idea why those of us with chronic illnesses start foaming at the mouth when someone says the word "rheumatologist." Allow me to give you a short list of some of the most offensive, yet common, things that we lupus patients are regularly told by the people who are supposed to be working to keep us alive. Incidentally, these are also things that you should never, ever, ever say to a lupus patient unless you like being repeatedly whacked on the head with a cane.

Update 7 March 13: As per reader's suggestions, I have added a couple others.

12: (Not one I've gotten) "You're just a bored housewife." A lot of stay at home moms get this one. Why, I don't know. From my observations on the subject, I would surmise that stay at home moms don't have *time* to get bored. They're too busy preventing the toddler from burning down the house.

11. "You're hypochondriac/It's all in your head/You're just depressed." Yes. Because depression often makes people break out in a rash, have blue fingers and huddle up in pain.

10. "You look fine." No sh**. I look fine because I have to interact with normal, healthy people every day, and I don't want to scare them. (See here for more details on that.) But ask yourself this: would I still look fine without the wig/scarf/hat/etc., half pound of makeup and clothes that cover up my badly bruised limbs? No? I thought not.

9. "You need to try Tai Chi." Ok, I have nothing against Tai Chi. Or Chai Tea, if it comes to it. However, if you're seriously suggesting that my pain will magically go away if I start doing Tai Chi, I want whatever drug it is that you're taking.

8. "You're just stressed out." This is, in fact, true. I am stressed out. Being chronically ill, trying to find a job and having a sociopath physician will do that to a person. That being said, I'm still sick, and it's still your job to make me less so. Hop to it.

7. "You need a boyfriend/girlfriend." No joke, I was once told this (a long time ago) by a physician. Surprisingly, she didn't write a prescription. I was disappointed.

6. "You shut yourself in too much. Go out more." Ok...let's make a deal. You treat me to the point where I need fewer than 16 hours of sleep a day to survive and I'll go out more. Until then, me and my caffeinated self will continue to try to survive school and/or work, 'k?

5. "You should go out in the sun. Just wear a hat and sunscreen." You have *got* to be kidding me. Five minutes in the sun = one week of fevers. Plus I have a history of melanoma. And you're yelling at me for staying inside too much?

4. "Oh, just ignore the fevers [from #5]." Really? I bet if *you* had a fever you wouldn't be here insulting me. You'd be in bed, whining. I have spent months wherein I had to go to work every day with a fever of around 100F. I did my work. I did it well. But I sure as hell wasn't able to "just ignore" the fever.

3. "[Your symptom] is not lupus because I've never seen it before." I'm not even going to comment on this one.

2. "Your [insert blood count here] is in the safe range, so I'm not going to do anything about it." Really? Safe range? While I'm glad I'm not (currently) in the range that means I could drop dead at any moment, I'd really be a lot happier if I were in the normal range, rather than the "safe" range. And that normal range is 5-10 times  higher than your so-called safe range. That's a problem. Please fix it, or be honest enough to say you don't know how.

1. "I'm going to give you an anti-depressant for your pain." Really. Because that doesn't belittle me or the fact that my body is trying to kill itself. Don't get me wrong, anti-depressants are good things for chronically ill people. I'm on about five of them. But my pain is not all in my head, it is not the result of negative self-image, nor is it going to be cured by giving me yet another psychiatric drug. The pain, Dr. Genius, is coming from lupus, not depression.


As I read through this list, I feel that warm glow of pride that comes from the fact that some variation of every one of these things has been said to me, but, and this is key, I have never been arrested for attempted murder. Not even for assault and battery. Go me.

Is Your Friend or Relative a Vampire?

There was some confusion this weekend on the topic of vampirism vs. lupus patient. I have to admit that I did not realize that some people still genuinely believe in vampires; you learn something new every day. So, for clarification and edification, I give you this simple flow-chart to use next time you're confused:

And the Newest Absurdity is....

For those of you in your mid 20s to 30s... do you remember the show "Daria?" I'm sure you do, because it was awesome. Anyway, to refresh your memory, and to fill in those poor lost souls who have to watch Daria through AmazonPrime or YouTube, I'll just point out that Daria and her friend were always watching a seemingly-unrealistic TV show called "Sick, Sad World."

I'm here to inform you that I have unwittingly stumbled into a set of "Sick, Sad World," and I can't get out. I mean, seriously...taken from an objective point of view, a script of my life would be ridiculed for being totally unbelievable, melodramatic and lacking in explosions...oh wait, no...chemistry class... Anyway, my point is that very little surprises me these days. Not even the newest development in the "Let's try to stop Sam's body from starving itself to death" campaign.

Are all y'all (as they say here in Baltimore; I think I've got the Southern grammar right, but am not totally sure) ready for this? I am going to get Botox injections. In my stomach. I kid you not. My stomach won't empty anymore, which is what doctors like to call "bad." Not even fluids can get through sometimes. So the answer is to paralyze the muscles that are not already paralyzed so they'll relax and let me eat/drink. Or that's the theory. I think at this point my physicians get together and throw ideas around: "Ooh, I know, next time let's try poison arrow frog!" "No, pufferfish toxin (tetrodotoxin)!" And then let's amputate two fingers, one ankle and a toenail!

So anyway, Botox. I'd make the obligatory jokes about being too young for Botox, etc....but they would fall flat. In other news, lupus and gastroparesis suck.

NSAIDs and Lupus

I've noticed that a lot of people have expressed interest in Celebrex and lupus. Celebrex is a member of a group of drugs called Non-Steroidal Anti-Inflammatory Drugs (NSAIDs). NSAIDs can be both over-the-counter (for example, Advil, Aleve, and Aspirin) or prescription (Meloxicam, Voltaren, Celebrex, and Relafin). They are usually a physician's first weapon of choice when fighting pain caused by lupus.

As their name suggests, these medications are not steroids, so they do not have the host of side-effects associated with corticosteroid treatment. That's the good news. However, NSAIDs are, in general, not as powerful as corticosteroids, and they do have side-effects of their own. These side-effects include easy bruising, gastrointestinal bleeding, and a reduced ability to heal cuts.

Prescription NSAIDs supposedly have fewer side-effects than over-the-counter NSAIDs. Note the "supposedly" in that sentence. Vioxx, for example was an NSAID similar to Celebrex that was pulled off the market when it turned out that the drug company that made it hid the fact that it increased the chance of heart attacks. So take such claims with a grain of salt, but go with whatever your doctor recommends. I, for example, am not supposed to take many over-the-counter NSAIDs because they have the potential to make me bleed because I have low platelets.

I wish I could say that Celebrex, Votaren, or Relafin works great for lupus. I can't, because none of the NSAIDs help me very much. But other lupus patients find that such medications are extremely helpful. So it depends on the patient, and the treatment plan for each patient must be discussed with a physician. Hopefully you'll find one that works for you, even though I have not.

Benlysta, continued.

For those who have asked recently, yes, I am still taking Benlysta. And it certainly still helping me. Unfortunately, it is not enough to keep my disease under control all by itself, but it definitely helps lower my fever and pain level. It ought to, given that it's costing my insurance company $3500 a month. #Ridiculous.

I find that the Benlysta starts to take effect within a few days of my infusion. Unfortunately, it tends to wear off after three weeks, and I'm scheduled to take it every four weeks. So one week a month is living hell. But hey, that's what side-effect medicines are for, right? Right? And the immunosuppressants that make me feel horrible and make me lose my hair? Fun times, my friends, fun times.

I have not experienced too many side-effects from the Benlysta thus far. I generally get a slight fever after taking it (despite being given Tylenol/Paracetamol before they even stick the IV in my arm), and a headache that lasts a day or two. Luckily, the headache is not a migraine, and responds to Aleve. Unluckily, my platelet count is so low that I'm not supposed to be taking Aleve. More fun! I also experience a day or two of bone-weary fatigue after the infusion. But, honestly, when do we lupus patients not feel like two-week old roadkill lying in the sun on the side of an Arizona highway?

The Supreme Ruler of the Home:
The Early Years.

So, in the end, if you are lucky like I temporarily am, and have insurance that will cover Benlysta, I do recommend it. It takes the pain down by two to three points on the dreaded pain scale, and makes it so I rarely run a fever these days. Which is a definite improvement over the "always running a fever" thing I was doing in the pre-Benlysta days. Of course, you may find yourself falling asleep at 7:30 the evening of the infusion, but hey, maybe you'll be lucky and wake up at 3:30 with insomnia, nausea and a cat that wants to played with NOW. Nothing like trying to write a thesis with a cat sitting on your lap batting things off your desk. Good thing she's so cute...

Seriously?

Ok...I try to keep this blog more or less informative. And I try not to rant without at least pretending to have an educational reason to do so. But right now I'm royally pissed off, and feel the need to say so.

I have gastroparesis. Not even liquids empty from my stomach as they should. My specialists realize this, and realize that it is a very serious condition. I've been steadily losing weight for a long time now, despite my best efforts to get calories somehow, anyhow. Last Sunday the combination of half a protein bar and an antibiotic made me glad I'd purchased bright pink barf buckets. This is not fun. This is not normal. This is not what I want. People with gastroparesis cannot eat things with much fiber, so salads, for example, are out. I love salads. I used to eat them on an almost daily basis. Now I can't. I'm pretty much stuck to liquids these days.

Reading all of that, just imagine how I feel when I am told that it is, essentially, my fault. My primary care doctor (who is no longer my primary doctor) believes that I am anorexic. Not anorexic in the scientific meaning of the term, "does not or cannot eat," but anorexic in the mental illness sort of way. His logic? Anorexia means you don't eat. Not eating slows down your stomach. Ergo, I'm anorexic and that's why I have gastroparesis. Note that he has not even bothered to get the report from the GI doctor. He didn't see the endoscopy results, nor does he care about them. Anorexic he believes me to be, therefore anorexic I must be. No firm evidence that contradicts his pet theory will sway the idiot. I do not appreciate this.

I have to live with my disease every minute of every day. I have to live with the sure knowledge that every physician, psychologist and/or personal trainer will immediately assume that I am anorexic. I have to sit in class trying not to be made sick by the smell of my neighbors' food. I can handle all of that. But what I can't handle is being told that it is a mental illness that, though serious, I do not have. It insults me, and it insults those who genuinely suffer from anorexia nervosa.

Parting Tip: Don't ask a chronicaly ill person how she stays so thin. Just. Don't.

With Many Thanks!

(Sorry, it's hard to photograph a transparent plaque!)

Yesterday, much to my surprise, I received a plaque in the mail from the Alliance for Lupus Research (ALR) It was given in recognition of my team's fundraising efforts for the DC Walk for the Cure. It really shouldn't have my name on it...it should have all of your names, as so many of you donated so generously to our team. So, once again, thank you, and know that the ALR thanks you too!