My first major lupus flare... or is it measles?

If you read my last post (and I believe that stats showed that one person did, although I never know whether they are counting me by mistake)-- you already know that I was headed into something bad.

Yes.  I thought it was bad on Tuesday.  I'd gone to a Bible Study Fellowship meeting, followed by lunch with some of the women (I was very good and had a self-designed salad with safe ingredients).  After lunch, I picked Jon up at school, and on our way home, I began a headache.  Headaches are a pretty normal lupus symptom for me; I didn't think too much of it, just spent a lot of time down on the sofa, feeling guilty for not making dinner.  Shawn came home and cooked up some GF spaghetti for us.

I kept telling Shawn, "My skin is all sore and tender.  And I keep feeling chilled.  I think I have a fever."

Finally he said to me, "Why don't you take your temperature?"  I whimpered and whined and said I didn't even know where the thermometer was, and I didn't feel good enough to look for it.  A few minutes later, Shawn appeared in the kitchen, thermometer in hand. We checked my temp and it was 99.6.  Now, for me that is actually significant, because my normal, baseline temperature runs 97.5.

"No wonder you don't feel good," Shawn said.  I went to bed and tried to sleep it off.

That was Tuesday.

On Wednesday I had to take Schubert to the vet at 9 a.m. for a follow up.  It was hard to get going, and it was a 30 minute drive, but in the end we were only 5 minutes late.  However, by the time we got home I was utterly wiped out.  We were still low on food... I think we've been low on food since we got back from our trip to visit Shawn's parents.  But I opted out of heading back out to do major shopping, and looked in the refrigerator to see what I could make with what we had.  Using fresh tomatoes from our neighbor's garden and some frozen ground beef, I was able to put together a nice pot of chili.  I also baked coconut flour cupcakes.  Those were my three accomplishments on Wednesday: vet, chili,  GF cupcakes.  Then I was shot.  And I still had a fever.  I think it was 100.4.  I was able to get down a partial bowl of the chili for dinner.

On Thursday, I decided that I seriously needed to lick this thing.  By Thursday, food was looking bad to me.  I was having trouble swallowing more than a couple of bites of anything.  I drank tea and stayed in bed most of the day.  I accomplished exactly nothing.  My throat was starting to hurt a little bit; I thought perhaps this was because I'd been forgetting to take my Claritin since all this started.  I tried taking a Claritin.  My skin was still tender; my whole body was tender.  The fever was rising slowly.  At the end of the day, after intentionally resting all day, I didn't feel better.  I felt worse.

Friday morning we had eye appointments, so I got up and got ready to go, still feverish.  Upon returning home after the optometrist, I was bushed.  I knew I should run Schubert over to the groomer for a medicated allergy bath, especially since I actually had the car, but I just lay on the futon on the sunporch, feeling guilty for not going.

The doorbell rang.  What?  It was the piano tuner.  Somehow I had forgotten, but at least I felt better about not taking Schu to the groomer.  The piano needs to be re-somethinged (realigned?).  I was not surprised, and I was quite happy that it can be fixed; I'd thought we'd permanently damaged it in the move.  In chatting with the piano tuner, I learned that his wife also has lupus, and that in the last few years, hers has advanced alarmingly to where her internal organs are all hardening and she has to make bi-weekly pilgrimages to Northwestern University for infusions.  Maybe that wasn't exactly what I needed to hear as I wandered lethargically from sofa to futon to bed with my first serious lupus fever.

I don't remember the earlier NSAIDs (non steroidal anti inflammatory drugs) I'd taken for the fever on Friday, but I took two ibuprofen at 8 p.m., because I couldn't wait until bedtime, and I took two more at 10:30 p.m., and after I let my mouth rest from the cooling effect of the water I used to swallow the second dose, I took my temperature and it was 101.4.  Now, that isn't what you would normally call an alarmingly high temperature, but when you consider that this was after 800 mg of ibuprofen (albeit staggered), after four days of rising fever, after a drink of water, it is higher than it sounds.

Sometime on Friday afternoon, I had called my rheumatologist, but she wasn't in.  They told me to go to Convenient Care and get prednisone... as long as I didn't have an infection.  I hate prednisone.  I asked if I could try to ride out the weekend.  They said sure.

Friday night was awful.  At 2 a.m. I got up with diarrhea.  At 3 a.m. I got up with diarrhea, vomited (almost nothing, as I was virtually empty after not being able to eat), and prayed for mercy from violent dry heaves.  At 4 a.m. I had another bout of diarrhea, but no dry heaves. 

Saturday is a blur.  I spent the morning in bed.  Shawn mowed.  Jonathan cut up a juicy, ripe cantaloupe, and I was able to eat some of it.  I willed myself to be better.  Willed.  We needed some food in the house.  We were out of meat, eggs, bread (for the guys), everything.  We needed juice, yogurt, applesauce, things I could stomach.

We decided to go to the southern suburban Walmart (as opposed to the northern urban Walmart).  It's a longer drive for a cleaner, better stocked store, where we could get most all the things we needed at one place.  Shawn also wanted to fill his new glasses prescription.

We forgot about the glasses until the end of the trip.  Then, carts laden with bags of meat and dairy, we rolled up to "Vision" and he started to look.  About halfway through, my body gave out.  I sat down and laid my head on my arms on the optician's desk.  I didn't care about anything.  I told myself, "If you are sick, you can rest here while he gets this done just as well as you can rest anywhere."  Which is not perhaps strictly true, especially in the middle of diarrhea cramps, but it is a good thought to have when you need it.

The rest of Saturday is a complete blur.  On the way home from Walmart, I lay in the backseat of the car with my head on a somewhat suspect carblanket, sipping a sunwarmed bottle of water from a package that had lain on the car floor since our last trip.  Later, Shawn gave me some of our new vanilla yogurt and applesauce in a square glass bowl for dinner.  This is all I remember.  I'd thought it would do me some good to get out.  I'd thought wrong.  My fever was 100-something.  I think 100.8.

Sunday, I did not go to church.  I woke up with chest pains and a sick stomach.  Although the thought of swallowing anything was repugnant, I finally willed myself to take one aspirin.  That did help the pain, and did not seem to worsen the nausea after the initial swallow.  I tried to sip water and tea, and worked on getting ready to go to Convenient Care, like they'd told me to do in the first place.  It took me hours.  I got into the shower, and the water was too hot.  I turned it back.  It was still too hot.  I turned it back again.  I still didn't feel comfortable.  I looked down and thought, "My goodness, this water is making my legs get mottled!"  Then I realized that my legs were not just mottled, I had a ferocious rash all over my whole body.  By this point, I was dizzy, nauseated, starving hungry and dehydrated.  My fever was hovering at 100.4.  I stumbled out of the shower and lay naked and rashy on a towel on my bed, trying to get dry.  I can't remember whether I was hot or shivering, but I know I felt sticky.  I thought that perhaps I might die.  I hoped I would have time to write a letter to each of my children before the end. 

I took a zippered, hooded sweatshirt and my favorite pillow to Convenient Care and stumbled towards the only spot in the waiting room that was a double rather than a single seat.  Fortunately, the waiting room was mostly empty, so I didn't feel too greedy.  Unfortunately, it was awkwardly close to another patron.  Fortunately, I didn't care.

We got in to see the doctor ridiculously fast.  Or maybe I was unconscious during the wait.  The intake nurse weighed me (I'd lost a few pounds) and took my temperature which came out as, ironically, 96.  That had to be a mistake.  Even for me with a baseline 97.5, there's no way that was right.  And with my recent history and the way I'd been feeling that day, there's no way that was right.  Then she read off the form in front of her, "On a scale of 1 to 10, how would you rate your pain today?"  I was not in good condition.  I probably was not filled with the Holy Spirit.  I stuttered and tripped and hemmed and hawed and finally said, "That's too hard of a question.  I have no idea how to rate my pain.  I'm nauseated.  Nausea skews everything.  I'm so miserably nauseated I couldn't possibly tell you what my pain scale is."  I think she wrote down a 2 in the end.  I'm not sure if you always get your top-of-the line medical practitioners on Sunday at 1:30 p.m.  Well, she was probably trying to do her best.

The doctor asked me all the questions:  Do you have chest pain? (yes) Well there probably isn't anything wrong with your heart.  We can send you over for a chest x-ray if you want. (no)  Do you have a sore throat?  (yes)   Any coughing (yes, just started) blah blah blah.  It seemed to me that there were some reasons to think that I might have a flu bug, or even (based on the rash) the measles.  The doctor gasped a little at the rash when she pushed up my shirt to listen to my heart.  But in the end, this doctor, a small woman with distractingly white-rimmed glasses, seemed quite happy to call it lupus--not an infection or viral infection--and to put me on a "five day burst" of prednisone.

She also gave me Zofran for the nausea.  She gave me one right there in the office, and they kept an eye on me for 20 minutes (a miserable, frigid 20 minutes, during which I wrapped my aching ankles and feet in a towel I audaciously pulled out of a drawer under the examining table).  I asked the doctor whether Zofran has any side effects.  I had a bad feeling about constipation.  I felt too stupid to ask the question though, since we'd just been discussing my watery diarrhea.  Sure enough, since that one Zofran in the doctor's office, I haven't had any more diarrhea, or anything else, for that matter.  Shawn says not to worry since my digestive system is still very empty.  I worry a little, since I'm not really at a point to be pushing leafy greens.

I am feeling better.  Although, last night, my first night on prednisone, I woke up three times, soaked with sweat and had to change my pajamas each time.  Drenched sleep shirts lined the edge of the garden tub in the morning.  I should have changed the bed sheets when I changed my pajamas, but Shawn was in the bed.  I laid out an absorbent towel over my damp sheets, and finished the night on that.  This morning I had lots of laundry to do, which cheered me up after how unproductive I've been for days.  It's good to feel better.

When David heard that they'd given me Zofran, he said, "Buy prune juice!"  As a result.  I have found that prune juice, over ice, diluted with some club soda, is actually quite a palatable drink.