Monthly Archives: March 2008

Ask the Experts at LFA

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The Lupus Foundation of America provides an Ask The Experts section on their website, where you can submit a lupus related health question.

I know many of you know about this already, but I thought I would mention it for anyone who didn’t.

You can find answers to many common questions in the same section. Here’s a good example:

Q: How common is it to have both Lupus and RA?

A: Believe it or not, it is more common than you think to have more than one disease. This is called overlapping connective tissue diseases. The connective tissue diseases are a family of closely related disorders. They include: Rheumatoid Arthritis (RA), Systemic Lupus Erythematosus (SLE or lupus), Polymyositis-Dermatomyositis (PM-DM), Systemic Sclerosis (SSc or scleroderma), Sjogren’s Syndrome (SS), and various forms of Vasculitis. Although lupus most often occurs alone, many people with lupus also have symptoms characteristic of one or more of the other connective tissue diseases. In this circumstance, a physician may use the term “overlap” to describe the illness. There are several well-recognized overlaps that may affect people with lupus this includes the overlap of SLE and RA.

Strangely enough, I haven’t submitted a question yet. I tend to just look things up. Has anyone used this service to ask a specific question? If so, how long did it take to get a response?

Have Lupus – Will Travel

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My wife and I are making our regular four-hour excursion to the UCLA Medical Center to see her rheumatologist. It will be the first time we’ve been there since the disaster months of November and December, 2007. I’m taking the day off of work so I can be there and talk to the doctor. I think she’s an excellent doctor, and I trust her, unlike the score of medical wackos my wife has seen in the last few months.

It’s a terrible drive, and the sun is always a problem. We try and put something over a window so my wife doesn’t get too much sun, but it’s no fun for her. We try and cover her up, but then she gets hot and we have to blast the air conditioning, which quickly turns me into a snowman.

On the other hand, it is nice to get some quiet time together, even if it’s for a crummy reason.

I was wondering if anyone else has to, or chooses to, travel like this to see a lupus specialist that they consider worth the inconvenience?

Lupus is Not Funny

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One of my favorite web-comics is called PVP, which stands for Player Vs. Player. It’s a great comic created by Scott Kurtz and it’s the only web comic I read with any regularity.

The strip posted today, It’s Never Lupus, really annoyed me. One of the main characters, Brent, was recently injured in a company paintball game, when his fiancee, Jade, shot him in the nipple. Normally, I would consider this worth a chuckle; however, when he is taken to the emergency room, his doctor says,

At first we thought it was lupus.

Yeah, now that’s funny.

I don’t blame Kurtz in any way. I still think he’s hilarious, and I will certainly continue to read PVP just like I continue to watch the television program that started this running gag. The writers and producers of House placed lupus into pop culture, not as a life threatening illness that screws with my family’s life each day, but rather as a funny diagnosis that’s never quite accurate. It’s never lupus, right? It’s always some real disease. A disease that everyone understands. A disease that plays by the rules.

Well, sometimes it is lupus, and it really sucks.

What to say when your loved one has lupus

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I was reading an article today from Fibrofighters.com, which is a new site for me. It came up in my weekly search report on chronic illness. There’s a great article today about supporting a loved one with a chronic illness, but I was interested in particular in a section about what to say to a friend.

There’s no perfect thing to say when your loved one is having a bad day, and nothing is wrong with admitting, “I don’t know what to say.” You don’t have to say anything, as long as you listen to her and let her know it’s OK if she wants to vent.

What if the sick person isn’t taking medicine on time, is eating poorly or is otherwise not taking care of himself? That’s a tough one, says Jay, and what you do depends on your relationship. Talk to his caregiver or a close family member first. You could gently broach the topic with your friend, but be aware that he may become angry.

What if you are the caregiver or close family member?

I have struggled with this for years. It’s very hard to know what say. My wife is in pain all the time to some degree, but when she talks about that pain, she may need me to react in a number of ways. I can:

  • just listen and let her vent
  • be sympathetic and talk about how lupus sucks
  • be optimistic and encouraging
  • give her a verbal kick in the pants if she needs to be more proactive

I can tell you, and so can my wife, that I don’t always make the best choice. I do try my best, but it’s hard to see someone you love be in pain.