March Madness in New Mexico

I began this message sitting at the March 2011 meeting of the Vasculitis Foundation in New Mexico. It sat in drafts for the two months since, and I went back to it today (6/16/2011) and added some observations. If it seems a little random, well, maybe it was.

Pondering recent events, I am reminded of the difference between a 10/90 and a 90/10.

Are you a 10/90? Someone who makes a general plan for about 10% of the project, then spends the rest of the time figuring out the rest and smoothing out the kinks

Or are you a 90/10? Someone who throroughly researches and plans out every move before they initiate the action phase of any plan.

I find it amusing that most people would not disagree that it is better to do a few things very well, than to do many things poorly. In fact, we call that specialization and the world seems to be moving increasingly in that direction.

So what is possible with Vasculitis?

Who are the faces of vasculitis?
We have children, housewives, and military veterans. We have brothers, sons, and fathers. sisters, daughters and mothers. All walks of life are represented. Even though they include a subset of very rare illnesses, the vasculitides are representative of people from many walks of life. The symptoms hit people without regard to socioeconomic status or how well or poorly you have lived your life. You do not get rewarded with a cure for being good, nor do you get punished with "extra" vasculitis if you have been bad. Santa Clause will not hold vasculitis against you if you just don't feel up to participating on those down days.

For non-patients, we struggle because we care about our loved ones. We want to see them happy. We want to see them active. We want to see them well. It is challenging to stand by on a down day and remain quietly supportive when there is really not much we can do. That feeling of powerlessness rumbles inside and makes us yearn for something to change.

Patients need caregivers to be considerate of their limits. Those limits that can change day by day depending on how their various symptoms affect them. Everything from side effects to medications to the ever present chronic fatigue means that patients must make smart decisions about how they will spend the energy they have on a given day.

Looking at the other side of the coin, patients also need the encouragement of caregivers. With the daily burden of feeling unwell, the constant pressure to rest, and the wearisome mental reality of side effects (the meds keep you alive, and the meds also make you feel unwell.) Patients without caregivers have one less ally in their corner. One less cheerleader urging them to continue, day by day, putting one foot in front of the other.

In the balance, patients and caregivers are allies, but they do not always share the same goals. Some days, patients just want to let it all go, and stay in bed, whether that is the right thing to do or not. Caregivers often probe those limits, and it must drive the patients crazy to hear that constant question: How do you feel?

The inevitable answer is always, "Not as good as I would like to."