Focusing on the Lupus Body Problems: How Much is Too Much

Monday, January 19th

I just finished a video on stretching using the ball. It felt so good. I went into it very tired and somewhat sore. I came out of it feeling like I'm breathing more fully; like I can really feel my legs underneath me and more tired than when I began. I haven't compiled a list of my New Year's Resolutions, but were I to, daily exercise beyond walking would be near the top. Stretching; it's good for my body and good for my soul.

It's been a very bad few days for my hands - the pain in my joints has increased ten fold - I had to take pain meds for my hands for the first time. The only thing I did differently over the past four days is cleaning showers and vacuuming hard wood floors and carpet. My hands don't like it but it has to be done. My husband bought a Rumba self propelling vacuum robot - I hope it helps.

At the lupus walk awards luncheon my husband and I attended last Saturday, one thing struck me as it always does; at Lupus functions, people define themselves by their disease. In the first three minutes, most people tell you how long they've had it, how old they were when they were diagnosed, what the severest manifestation is in their body and who their rheumatologist is. Wow. I know all this information about you but I don't know your name, where you live, what you do for a living, for fun, if you're married, children, grandchildren???? But I know that yours is a very 'worse case scenario', that you've done dyalisis and almost died, that you're on 6mg of Prednisone but you were on 45mg at one point, etc. It is so sad that, at least in this atmosphere, my experience is that people define themselves by their Lupus. On the one hand, I totally understand. When Lupus caused me to close my Private Practice, give up all extra curricular activities and be house or bed bound for nearly a year, I was the disease. It consumed me every waking hour and woke me most sleeping hours. Then it got really bad and I spent five weeks in the hospital concluding with an esophagectomy and a stomach pull through to make a new esophagus. By this time, I had had ten operations in 12 months. I was sick of what Lupus was doing to my body. Lupus was controlling not only my every move, but my ability to take in noursihment (no food or liquid by mouth for four weeks), my ability to have any relationships as my hospital was an hour and a half away from my home so friends never came. My only visitors were my husband, my children and two very dear friends. The loneliness of this disease is for another day. But, back to being defined by the disease. I have come to the point where I don't want to be identified by having Lupus. I'm more than willing to talk about my Lupus and all the ways it has and still is impacting my ability to live a normal life and to keep up with relationships and friendships. I'm just struggling with how to interact with Lupus patients at meetings in ways that don't involve the disease. I need there to be room for both - for the person and for the disease.

I think that defining ourselves by our disease is a stage all Lupus (cancer, MS, etc) patients go through. I'm sure there are developmental milestones in the course of a chronic illness. By choosing to define ourselves by our disease, in some ways I think we are crying out for help - wanting, even if we are not aware of it, wanting people to know how bad our life is. We need them to 'get' the horror of how destructive and devastating Lupus is. But really, only those with Lupus will 'get' the horror. And we have to ask ourselves, how many people do we need to know how horrible our life really is. Sometimes it's a lot of people - particularly when you come from a fairly large family as I do. I keep asking myself as I traverse more tests and new findings, how much my friends need to know and why do I need them to know it - so they can help me or understand me or feel sorry for me or pray for me? Each one of these needs suggests, in my experience, a different level of self-exposure.

Okay, where I am? Tomorrow I go back to the Dr. to get test results. I'm really okay with that. What is bugging me more is how to initiate interactions at Lupus gatherings that have some hope of moving beyond the 'hi my name is Susie. I was diagnosed ten years ago, am always fatigured, and hurt from fibromyalsia ....". I need a good comeback that doesn't blow them out of the water - like "Gosh, you've been through a lot. What was your name? Oh, hi Lisa, I'm Susie and I'm really excited at how many people are here today." My mind is swirling - underneath this whole issue is my need and desire to find a few intelligent, solid, emotionally connected people who also have Lupus. I need them to be part of my life. None of my friends have Lupus. Nor do any family members. So when the disease rages, there is no one close to me that also knows the disease up close and personal. You know, one of the cool things about blogging or journaling, is that it always helps me define what the real issue is for me. After all, that's what matters most. I know enough to know that when someone's behavior bugs me, it bugs me because they are exhibiting a part of me that I don't want to acknowledge or admit to.
Getting bugged by defining oneself by the disease bothers me because I have defined myself by my disease and sometimes it feel like my disease is all that does define me. But I yearn for someone who doesn't lead with their disease and in order to find this person, I need to lead with my own life, not my disease.

My home care right arm helper is leaving for five months to nurse in a foreign country. I will and already do miss her sweet smile and her silly remarks. My daily life is being redefined since she is no longer here and I no longer have help at home. I want to really take in and remember how much I love and appreciate her work for me for the past almost four years. I am filled with gratitude that my husband has been able to provide for her out of our own pocket - no insurance help here. She's been a gift in my life and I'll miss her more than she'll ever know. I have been blessed by having her with me during the most devastating physical assults of Lupus. Now, I am better and she is moving on as she should be. Thank you, God for blessing me with her.