Being a Reunie

The roster:  Of the six sisters, three are here, another will come today, and a fifth tomorrow.  The absent sister is well-represented by her daughter and two granddaughters.  Sister number two and her husband have all three of their children-one with spouse-and three grandchildren assembled.  Number four will be accompanied by her daughter Friday, and they will bring the family heads (my mom and dad) for a one day appearance.  The baby sister has her two daughters and a goddaughter with her.  I have my daughter and host son, of course.  I count 26.  For the first time, it seems that reunion will just consist of the core family, no cousins or distant inlaws, just the offspring of the precious couple, and their households.  We span the country in both directions, from Houston to Minneapolis, Palo Alto to New York City. 

 

This was a difficult time to promote a reunion.  We only gather every two years, and despite admonitions to start saving early, most of us didn’t.  Some relatives just couldn’t muster the funds, having sustained new births, job changes, the death of important travel partners, college fees, and every other manner of family stressors.  Conscious of these factors, those of us who organized the event tried to choose a hotel that offered in-room kitchens and free meals (daily breakfast and three days per week dinner), on-site exercise facilities (no gym fees), access to good shuttle service (three mile radius, again free), and on-site meeting areas (a beautiful dining area and lounge).  This Staybridge Suites has all that and is in a beautiful part of town.  It is recently renovated and quite well-appointed.  Our suites even have dishwashers.  At $139 to $149 per night, I feel that we have a bargain. 

 

The bigger bargain is having all this family.  When you see so many of us together, it becomes obvious that we are related.  There is so much talk, and laughter, and animation.  We tease and play easily.  There is no subtlety in this group, and little restraint.  We sat in the dining room from 8:30 to 11:30 this morning, some coming and going, most hanging around, finishing breakfast and then staying for the comraderie.  My host son came down when called, ate hastily, then retreated to his room.  When one sister discovered him missing, she called him back down on a false errand, making him sit around and listen to the banter, drawing him into the conversation almost against his will. 

 

Everyone’s out now.  They loaded into cars and taxis to go see exciting local atrractions.  Except me.  I’m sitting on the couch distracting myself from the pain in my legs and hips.  TV is on and I’m considering a movie.  I’ll knit. 

 

A friend has asked-and people do tend to ask this question a lot-why my disease flares.  I must first say that my disease has never been inactive.  I’ve never been in remission.  Remission is when, even off all medications, the disease is quiet.  I haven’t been there even once in 16 years.  So first, I guess a flare may just signal the end of a medication’s effectiveness.  I’ve been through prednisone, methotrexate, Imuran, Plaquenil, naproxen, Enbrel…those are just the ones that come to mind easily.  The chemo that I take now is the clearest demonstration of a medication’s effect passing:  it kills the B cells, I get better, then the B cell population is replenished, and I begin to get sick again, signaling that it’s time for a new dose of chemo.  It’s not food, or activity, or emotion, or anything else controllable that triggers my flares.  The fire is always there, it’s just a matter of how effective the firefighter is at any given time.  The wolf lives.

 

No one knows what makes lupus begin.  Clearly, I had a normally functioning immune system as a child.  Somewhere along the way it sustained some damage that made it change.  I believe that the damage was environmental, exposure to some toxic chemical in the form of a food additive or a home care product…something that made my immune system sit up and take notice and start to fight against the wrong substances.  The scientist who isolates a specific cause will be my hero. 

 

Meanwhile, an overly thin Jacqueline Bisset is on my television set, being psychic and entertaining me enough to make me forget that I can’t do what the other reunies can do so easily.  I’ll meet them again at dinner. 

 

Peace.

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2 Responses

  1. What a wonderful occasion! I knew you had a lot of sisters, but I don’t think I realized there were six. Where do you fit in the line-up? I think I’ve told you, we have four daughters (in 5 years). What a great group they are! And I can tell yours are, too. Enjoy your get-together – even the quiet times.

  2. Dear Essiewb,

    Hey, my name is Sahar, I am with http://www.wearelupus.org. I’m glad that your family reunion fared well! Your blogs are very interesting especially for individuals that are either afflicted by lupus themselves or have family members afflicted by it. There are a prolific group of members on the website that I know would be keen to read your blogs. I think that wearelupus.org will be of great interest and use to you as you will have the opportunity to interact with people that are in similar situations as yourself. Amongst us, there are dedicated users that will avidly read your blogs and it would be great if you could come and leave your comments/thoughts. Below I have given the guest access information. Look forward to hearing from you.
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