Keep On: Lupus & Me

It was hard keeping track of my medicine schedule.  Besides the weekly infusion therapy, I was in the trial, succeed, trial, let’s wait and see stage of my new life.  I had several specialists I would see regularly over the next year– a rheumatologist, a neurologist, endocrinologist and other internal medicine physicians.  My case was so medically interesting that I was asked for permission to allow three medical students to observe treatments and some visits.  I agreed. 

A nice young lady who would soon be a doctor stood by as I had the first of several kidney biopsies.  The nephrologist commented on his surprise over the amount of fat his biopsy needle/claw had to traffic through to get to my kidney.  The contraption he used looked like a skinny metal turkey baster with a long rod.  I asked how the procedure worked and then wished I hadn’t.  I can still feel the small scars that formed on my lower back where the turkey claw battled my back cellulite to reach my kidneys.  The doctor couldn’t see my face.  The procedure required the patient to lay on their stomach.  I tried to turn around and look him in the eye to see if he was serious about the layer of fat.  The almost doctor saw me and I could almost hear her saying he was just a dumb guy– sure he has a lab coat on and drilling holes in your back but he’s still clueless for some things.  The doctor with the claw baster must have recognized the look from the young medical student– maybe Dr. Claw was married and had seen the look on his wife enough times to know he had some “splaining to do Lucy.” He recovered nicely. He said he mentioned the fat because he was surprised because I didn’t look fat.  I only weighed about 110 lbs at the time and didn’t even come close to being overweight.  I wasn’t surprised the doctor had struck the deep well of fat.  I always knew the storage of twinkies and ding dongs went somewhere, I just never guessed it was insulating the area surrounding my kidneys. It’s not like I had a camel’s hump back there.

The doctor said that inside the baster was a long needle like part with a tiny little claw at the end.  Once the needle made it to my kidney the claw would grab a chunk of my kidney and it would be analyzed at the lab.  I never had any kidney problems and didn’t really even know if kidneys were one of those organs you could do without or manage if they were less than 100%. Lupus and I first met on a blind date.  It took me out in the middle of the night and when I woke up, I had a puffy abdomen and even puffier legs.  They were twice the normal size.  Each leg looked like a puffy skin colored tree trunk.  The ER determined my kidneys were leaking protein– other lab tests came back so abnormal they ran them three times.  The lab results were correct.  It was a weekend.  I could hear the doctors calling other doctors and whispering.  Hours went on and they didn’t whisper anymore.  Something was seriously wrong with me.  By Monday, I had appointments with several specialists.  Lupus was a sly dog and I didn’t find out the name of my condition until a couple weeks later.  Diagnosis such as IGA Nephropathy were first considered.  Soon I had a name for my sneaky blind date.  This was not speed dating or even a short lived bad relationship.  It was a long drawn out affair without escape.  I had lupus.  Now what?

I had two jobs at the time.  I had been doing just fine.  How could I just quit working?  One of my jobs was stocking merchandise at a large store overnight.  The store stayed open but few customers came through.  It didn’t pay much but I knew some of the people who worked there from school.  The radio would play over the loud speakers and we would make bets to see who would finish the most pallets.  We hauled pallets stacked with boxes of new items for the endless aisles.  I loved stocking the cosmetics sections and kids clothing.  If it was my night to hang up new clothes on the kids clothes racks, I would start a list in my head of all the things I would buy for my kids on payday.  When payday arrived, the check would be mostly gone after paying bills, groceries and maybe a small toy for each of the kids.  The clothes would wait but I promised myself one day I would be able to buy them new outfits and shoes whenever I wanted not just because they didn’t fit anymore. 

If I stopped working how would we manage?  We were barely making it with both of us working. Everyone told me that my health was more important than working. I knew they were right.  I was just starting my adult life.  I stared at the device taped to my arm, wrist and hand.  The doctors said it would be better to leave a small catheter in my veins while I was getting infusion therapy.  I don’t remember if it hurt much to have it in there all the time.  I do remember it snagged a couple times while I was sleeping.  My family worried I could get sick or an infection if it got wet.  The doctor didn’t think it was an issue.  Still we wrapped large plastic bags around my arm and most of my hand before I could take a shower. 

I called the college counselor to tell her I needed to drop my classes, well at least some of them.  She asked if I was ok and I started crying.  I stayed enrolled in the English course.  I loved that class.  I read stories but in a different way than I read them before.  I wasn’t just reading for fun anymore.  This was important.  I had worked so hard to stay in college.  I made the President’s list and the Dean’s list my first quarters at the community college I dropped in and out of over the next several years.  Nevermind I didn’t know who or what the Dean was.  It showed up on my transcripts and I knew it meant my grades were better than good. I never finished the English class.  I just stopped going and never officially withdrew from it.  It showed up as a 0.0 on my transcripts and lowered my GPA.  There they sat on my transcripts, those double zeros, until many years later I took the same English class again and my new grade replaced the reminder of the days I almost gave up.  

Don't ever give up!
That’s me with the short hair.  Don’t ever give up!

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