Things just continue to pile up. We’ve had car trouble in the thousands of dollars, because of maintenance and accidents. Stuff is falling apart around the house. Jenny had a severe reaction to Arava which was very scary. My work is insane, and when I say insane, I mean crazy, like dressed up like Mayor McCheese shooting up a Burger King crazy. It’s all too much for me, I guess.

Knowing that it is never smart to ignore symptoms, I went to the doctor to see why I’ve been having chest pain. I went expecting to hear, “Oh, you are stressed out. You are fine.” That’s what I expected, but that’s not the answer I got. I got, “Oh, well, you may be having some issues. You need to go to a cardiologist.”

Seriously? Now? I don’t have time right now.

Don’t worry I’m working careful, hard, and I’m going to school really long and read my body books 145 pounds* so I can get my tools and fix your lupus and kidneys. I think you don’t have a strainer**. I wanna grow up and take care of my momma. I will build you a strainer.

That’s about all I can write about this, because I will look really stupid if I get teary-eyed sitting at my keyboard. He’s a really good boy.

*My son measures everything in pounds for some reason. I think it started with the phrase, “Me too”, which he would hear someone say and then he would respond, “Me twenty-four”, or something like that. He thought too was two and I think he also thought the numbers were a measure of how much you were in agreement with something. Then he learned about pounds as a measurement at school, and so now he measures effort, work, love, etc, in pounds. Time is about the only thing he doesn’t measure in pounds.

**My son is fascinated by how the body works. In one of his books, the kidney is described as a strainer, like the kind we use when we drain the spaghetti.

I usually manage to avoid it or I get it to a lesser degree. I’ve written about what we do to keep each other from Catching a Cold. Right now, Jenny is on antibiotics and I imagine the kids will be on them soon. I seem to be doing okay.

I usually just try and drink more water and wash my hands a lot. I also take a multi-vitamin, which I don’t do on a regular basis. I have no idea if that actually helps, but I figure it can’t hurt.

What I do think is worth talking about is what we do when we are ill to prevent our immunosuppressed significant other from getting sick? My wife has enough health problems. She doesn’t need a sinus infection as well.

Here are some things we commonly do to try and keep from spreading infection.

1. Wash your hands. This is where all the germs go for their travel needs. Those hand sanitizers are good too, but I just like the feeling of soap and warm water. Also, make sure your kids sneeze or cough into their elbow instead of their hands. It looks odd, but it helps.
2. Don’t share. Even when nobody is sick, we have a standard rule that no one shares a cup with my wife.
3. Buy lots of tissue. For the price of another package of cold medicine, I can buy half a dozen boxes of facial tissue. My daughter enjoys making giant snow-like mounds next to her bed when she’s sick. Cleaning this stuff up is not a chore for the immunosuppressed.
4. Sleep on the couch. We aren’t always so good about this, but we always talk about doing it when one of us is sick.

I have just run out of tissue as I type this.

• Lupus is a basic threat to the wholeness of the human being.
• Medical treatment requires the patient to trust strangers.
• The patient often suffers separation anxiety.
• The patient fears the loss of love and approval from friends and family.
• The patient may feel a sense of guilt and fear of punishment.
• Lupus causes a great deal of chronic and intermittent pain and fatigue.
• Lupus causes feelings of uncertainty about the future.

Dr. Schostal then discusses the kinds of reactions that he and other physicians has observed in friends and family members of the lupus patient. He has these suggestions for friends and family dealing with lupus.

First of all, lupus is a family problem and needs to be viewed as such. This requires that other adult family members and even children understand as much as possible about the disease. Regular contacts with the physician might be one route that one takes. The family member cannot share the disease itself or understand it exactly in the same way as the patient, but such understanding and sharing the consequences of the disease must be maximized.

My wife and I have had many discussions about this very topic. For many years, my wife tried to hide or downplay her lupus, even to her parents and siblings. She has gotten better at talking about her illness with friends and loved ones, but we still have a hard time discussing the situation with our children. We do our best, but with an eight year-old and a three year-old, it’s a difficult topic to talk about.

Secondly, and I will underline this, there is not single healthy response to lupus and a lupus flare-up. The trick is to find the best response at a particular time — sympathy when the symtomatology is at its worst; support during times of fear and crisis; a kick in the behind during the times of patient’s self-pity. I suppose healthy responses are those that fit the situation. Psychiatrists are relatively immoral people. I frequently tell my patients when they ask, “Well, what ought I to do?” or, “What should I do? What’s right, what’s wrong?” that these are determined not by any system of things that is written down. There are no “Ten Commandments” — but rather by what works for them and what works for their families, and the hard part is figuring that out.

No kidding it’s hard to figure out. It’s almost impossible when you include the fact that the friend or family member is also effected emotionally by the lupus patient’s illness. I do my best to anticipate the best response for a particular situation, but sometimes I feel so frustrated and helpless that it all comes across as something other than I intend.

Thirdly, and most important, is open lines of communication. The patient needs to feel comfortable telling other family members how they feel, what is wrong at a given time, and what they think might be helpful or what the family might be doing that is not so helpful … I cannot stress enough that the family also has to be willing to talk to the involved person about the same issues; how they feel, and what the person is doing that is bothering them, or what about the person you know is helpful for the family in dealing with the disease. It’s relatively easy, for example, for a patient to say, “Thanks, you’re all so good to me,” but there are times that the patient has to express the less positive feelings like, “It makes me angry every time I talk about how I feel, you change the subject.” For the family member, it’s relatively easy to say, “I feel awful watching you when you’re sick.” It’s much harder but perhaps even more important to be able to say, “This time I find myself angry with you for being sick and looking depressed, and I don’t even understand why,” or “Is it really that bad? Just last week you were doing fine, and this time you’re really getting to me.” The disease, for heaven’s sake, is a family problem and, as such, much easier to deal with given open lines of communication.

Lupus is so hard to understand, and that makes it even more difficult to discuss. I know for myself it really comes down to fear. My wife’s lupus is severe and life-threatening, but it may continue to be controlled with medication. We just don’t know what’s going to happen, other than that it will continue to be a problem that we deal with every day.

I hope that this site will allow some individuals, patients or loved ones, to discuss their feelings and frustrations, and to share what has made a difference. An illness like lupus is not something that should be faced alone.