Why?

Why me? Why not me? When we are sick, we ask why. When we are healthy we do not ask. We ask because we are trying to grasp the incomprehensible. We have to make sense of the suffering. Somebody or something is to blame. We have to know. If we knew, maybe we could do something about it. If we knew, this would all make sense. But we don’t know and it doesn’t make sense. I can use my energy to ask why or I can choose another reaction. I have that choice. I choose to manage my disease today.

I Never Told You

You came to help me. But I never told you what I needed. I just sat there feeling miserable. I felt sad for your helplessness, too. As you busied yourself tidying things up, cleaning and rearranging my kitchen because that was all you could think to do, I sat silently. What I really needed, what I really yearned for was to put my head in your lap and have you gently stroke my forehead the way my mother used to do. I never told you what I needed. I never got it. You never got the gift of giving it.

I Know Someone

She sat next to me in the waiting room at the doctor’s office. It was my first visit since I was diagnosed in the hospital. I was still numb with shock. She said, “I had a friend who had your disease. Her organs shut down one by one. It was such a horrible death. “ I changed the subject. She recounted more grizzly details. I said nothing. I pictured myself stuffing a sock in her mouth.

Why do people say such things? Why didn’t I ask her to stop immediately? How can I handle this differently the next time?

Giving Up (studies in learned helplessness)

I am rereading Ellen J. Langer's wonderful book, Counterclockwise: Mindful Health and the P0wer of Possibility. In one chapter, she writes about studies in learned helplessness.

Researchers took dogs and put them in harnesses. The control group was simply harnessed and later released. The other two groups were harnessed and subjected to electric shocks. One of those groups could stop the shocks by stepping on a lever, the other group had no control. After the experiment, the group that had control recovered quickly, while the other group exhibited symptoms similar to chronic clinical depression.

Those same groups of dogs were put into a shuttle box apparatus where they could escape the shocks if they jumped over a small partition. For the most part, the last group of dogs who had previously "learned" that they had no control over their fate, just lay down and passively whined. They didn't even try to escape the shocks.

Another study involved rats. Rats were restrained until they gave up struggling and went limp. Those rats and a control group that had not been restrained were put in ice water. The restrained rats didn't even try to swim. The rats that had not been restrained, swam for hours.

I felt that way in October of 2003. I had learned helplessness. It was actually a spark of anger at a psychiatrist that drove me to the library to learn how to live well with chronic illness. (Truth be told, it was less of a spark and more of an explosion!)

Langer goes on to write, "Why try to help ourselves if we have a disease that's uncontrollable? There wouldn't be much point. Remember, virtually every disease medicine has conqured was at one time thought to be uncontrollable, and again, it took someone to think it indeterminate to find out how to conquer it."

A Lesson from the Crud

I got the crud. I thought I wouldn't get sick, but I did. With the lupus well controlled and lots of good self-management tools in my tool box, I have managed to stay very healthy over all. But Monday night, that familiar clammy feeling and irritation in my throat heralded the arrival of the crud. (People don't seem to use the word crud much anymore. I think we should bring it back!)

I got antibiotics early Wednesday morning and soldiered on through stations of the cross, played a funeral for the matriarch of the Irish Travellers that winter at our parish and made an hour and a half lupus presentation to the Osceola County school nurses-a 200 mile round trip. A tanker truck of hot tea and broth, swigs of Dayquil from the bottle, and a good friend who offered to do the driving got me through.

But did I have the good sense to rest on Wednesday night? No! I was bound and determined to go out to the evening concert of Tampa Taiko. And I did. I rested a lot on Thursday and only had Mass in the evening. Despite the wonders of Nyquil, I woke myself up hacking in the wee hours of the morning.

This morning, I felt the need to reflect on my behavior. The first thing that came to mind is that soldiering on like I did on Wednesday is my own sneaky form of denial. Denial, by its very nature, does not like to be examined in the light. This is a denial that got fat after decades of my feeling miserable with no respite in sight.

But denial is not the only thing that comes into play here. I learned early on in my journey with lupus, that taking a couple of days off really didn't make a difference. I learned that I could be sick at home or be sick at work. Either way, I stayed sick. A common cold with lupus could last for 3 months! I am 60. Old patterns die hard.

Since I have gone into remission, I have had to learn new ways of deealing with the common ailments that afflict everyone from time to time. I have learned that doing nothing for a couple of days, napping a lot, and plenty of warm fluids can often stop a cold in its tracks. I forgot that lesson this week. I am remembering to follow that lesson today.

Sand Paper in the Soul

There are times, and today is one of them, when I feel like I have sandpaper in my soul. This is hard to explain, but I bet many of you know this feeling. I will try to articulate this. The feeling manifests as agitation and immobilization. You feel like you have to do something, but you can't get started. Little things are irritating-unbelieveably irritating.

It as if someone or something was inside of the physical shell of who you are and rubbing sandpaper on the inside of that shell. It is not really about circumstances, but they do play some role. It is just a feeling that will pass, soon I hope.

So, for today, I will just observe the sand paper and be still until it passes. It always passes.

Three P's of LuPus

My journey with lupus has taken me from food stamps, near homelessness and disability back to a happy and productive life. It took nine years! For eight of those nine years I have been involved with the Lupus Foundation of Florida, first as a volunteer group leader later adding the role of newsletter editor and facilitator coordinator. After four years on disability, I decided to try to return to work. I accepted a part time position at the Lupus Foundation of Florida and a post as director of music ministries at a small, low stress Catholic church.

Over those years, I have made many lupus friends and I have shared their journeys. Some people can't get past the feeling of being a victim. But for others, something clicks and they take all the anger and frustration and decide to fight like a banshee. My "ah ha" moment came after a visit to a mental health professional who was absolutely clueless. Recently, in a Facebook post, a friend who was diagnosed about two years ago made this post in our support group page. I asked permission to use it.

"Today was the battle of lupus versus ME and I won. I went for my 6th infusion and my blood count is UP...Next week, I am going for the improtant test and another infusion. I KNOW the important test for ferritin will be FABULOUS. When I started 8 weeks ago my ferritin was 25 (normal is 150+) and after three treatments it went to 47. Now, I know it will be 100 next time and then watch out, California here I come, ready or not. I won't let this damn disease control my life; I am in control. Eveyone of you with lupus, fight this disease with all you have and you will win! It takes perserverance, persistance and being pissed off (instead of feeling sorry for yourself). Those are my three P's. I don't usually swear but I will be damned if this disease will interfere with my future plans! I didn't work hard all my life to give in to Lupus when I have so much to do in my "rusty" years. Live, Love, Laugh, and Fight! Love you all."

Thank you L.K.!