"I Suspect Lupus"

Hey!  My name is Chandra, and I'm having a tired day.  My husband says it's okay though, because he understands.  My mom tells me it's okay because she was there for me when I went through hell for the first 6 months of being diagnosed with lupus.  And I'm here to tell you that it's okay to have a tired day with me!

So, the first post, I figure, should be about my story.  I actually wrote a book, but it's over 100 pages, and although I'm new to blogging, I don't think that would fit in a post!  Or you'd be asleep by the end and be drooling on your keyboard, and you'll never want to come back to my blog again!  So, I'll make it kind-of short and not-very sweet.  What lupus story is sweet?!  Hopefully it's something you can relate to though.

In January 2002, I could not get my butt of out bed to save my life.  I had early morning jazz band practice for middle school, and I just couldn't make it.  I also was embarrassed because my face was absolutely huge!  Eyelids swollen to the max, and I looked horrible.  My friends were understanding, but other kids just stared at me.  I don't blame them.  I wanted to know what the heck was wrong with me, too!  Also, I started to notice my fingertips got really sensitive and were very painful with cold sensations.  Add in the fact that I was gaining weight and my tummy was outgrowing my shirts, and yeah, I did not want to be seen.  EMBARRASSING! 

My old general practice doctor had just retired, and I started seeing someone new.  I'll leave the new doc's name out because I've forgiven him and moved on (never to go back to him though!).  He said I had just eaten too much over the holidays and to stay away from the table.  Ok, food is definitely not my favorite thing.  If I have to eat, I prefer celery and carrots.  I've never weighed over 90 lbs. (before this).  Alright, so, what about the eyelid swelling and painful fingertips?  Didn't concern him.

Fast-forward a couple of weeks to a month.  Gained much more weight, was losing mobility fast, swelling much much worse and not just contained my eyelids anymore.  Back to the doctor's office a couple of times but still no answers. He reminds me of Dr. House on TV, "IT'S NOT LUPUS."  Truth is, it probably didn't even cross his mind, because lupus is one of the most missed diagnoses.  Then he went out of town, and I saw a different doctor.  He said, "I suspect lupus," and ordered a straight catheter for a urine sample and some blood tests.  Lupus.  Check.  Referall to a rheumatologist immediately.  Check.

Rheumatologist figured out the swelling is from my kidneys shutting down.  So at this point, I now have lupus nephritis.  Referral to a nephrologist?  Check.  Kidney biopsy?  Check.  Complications from bleeding and extra 2 days in the hospital?  Check.  Anemic?  Check.  Blood transfusion?  Check.

Ok, so we got the problem figured out.  Now we can go on, right?  Wrong.  Kidneys are badly damaged from lupus.  Gotta start chemo treatments immediately.  Cytoxan (cyclophosphamide), I have a love-hate relationship with you.  Mostly hate, but you have some good qualities. 

Then came stomach pain.  Horrible doubling over, can't stand up straight anymore stomach pain.  Throwing up constantly, can't keep anything down stomach pain.  Mobility got harder, and I started using my grandma's wheelchair to go to school.  I just walked hunched over and crawled up the stairs while I was at my house. 

To the ER for uncontrollable pain and vomiting in the middle of the night on March 25, 2002.  In the ER, extreme high blood pressure of 217/115.  (normal is below 120/80.)  Grand mal seizure.  Doctors freaking out and calling Life Flight to come and take me to Primary Children's Hospital in Salt Lake City, Utah.  But first, a priesthood blessing from my bishop and close family friend.  Saved my life.  Thanks, Heavenly Father.  Learn more about my faith at http://www.mormon.org/. 

Woke up in Pediatric Intensive Care Unit (PICU) with lots of tubes coming out of me.  Where in the world am I?  I don't remember anything about coming to Salt Lake.  The doctors wouldn't let me eat.  Lupus had attacked my pancreas, and the only way to let it heal is to have no food and water.  I received TPN and Lipids through my IV.  Ultimately, I was deprived food and water for 18 days.  Also, I couldn't move by this point.  It felt so good to be turned side to side by the nurses.  They gave amazing back rubs, too.

Also in PICU, started a process called "Plasma Pheresis."  It takes the blood out of my body, spins it, treats it, and puts it back in.  Simple enough.  But scared me to death because my 14-yr old mind thought they took all the blood out of me at once.  I soon learned what the real deal was, but then the problem was that the "recycled blood" was cold as heck (cold as heck?  hmmm.... probably not the best simile!).  Also, it was done through the femoral artery so that's weird to have a tube coming out of your leg.  Very uncomfortable procedure.   

Anyway, after a week in PICU, I was stable enough to be transferred to the floor.  After being there a few days, I started having problems breathing.  I'm sure asthma sufferers understand this, but there is no feeling like not being to breathe.  It consumes your mind, as you're trying not to drown.  Well, that's exactly what I was doing.  Drowning.  Lupus attacked my lungs.  They had almost filled to the top with fluid.  Back to the PICU, but not before a priesthood blessing.  Once again, check it out.  Please.  http://www.mormon.org/.  They put me in a medically-induced coma and put me on a ventilator to breathe for me.  I was supposed to be out for 2 weeks while my lungs got better.  But I was better the next day.  Thanks, Heavenly Father.  The doctors and nurses called me a "miracle child" again.

Back to the medical floor we go.  This time, I worked on strengthening and went through hours of painful Physical Therapy and Occupational Therapy.  I learned how to roll over in bed first.  Very complicated process actually!  Who woulda thunk?  Then, I learned how to sit on the edge of my bed.  Then they made me get up and stand with a walker.  Then I had to walk.  Swollen feet the size of Texas make it very hard and painful to walk.  But the fluid is draining, I can tell.  Oh, by this point, I've gained 40 extra pounds.  I went from 90 lbs. being healthy, to 130 lbs. being sick SICK SICK!  Can we say stretch marks?!  All over my beaten-up body.  So anyway, lots of PT and OT.  Lots of being scared to death I was gonna fall flat on my face as I was walking.  Lots of pushing myself to be strong.  Lots of pain medication I was hesitant to take, but I gave in and was relieved afterward.  Lots of my mom's, the nurses', the therapists', and my wonderful team of pediatric doctors' encouraging and loving words.  And that is how I went from having to be turned in bed, to actually walking without any assistive devices.

Then the skin blisters started showing up.  Then high fevers.  Then my skin peeled all over my body.  Weird.  But not very serious.  I'd always had eczema and have battled my skin from the time I was born and could scratch my arms and legs.  No biggie.  The blisters eventually went away.

But then my right shoulder started hurting.  What the heck?  I had spent a month and a half in the hospital.  I was supposed to go home soon!  I wanted to enjoy springtime in my own yard.  Lupus had other plans.  It decided to attack my gall bladder.  After much convincing and pleading with the surgeons (they are the most stubborn breed of doctors ever!), finally had surgery.  It was supposed to be laprascopic, but of course...  Complications.  Had to make a big incision down my tummy and out came my gall bladder.  In went a JP drain to drain out the sludge-filled infection.  Painful things, those little grenade-looking drains are!  That was actually the worst pain I was in the whole time, post-operative pain attacking a weak, sick body.  A Morphine drip with options to have extra doses that I had control over (patient-controlled analgesia) did not even come close.  Scared I was gonna die from pain that intense.  Priesthood blessing from one of my doctors.  I fell right asleep.  My, how I love my religious beliefs.  I know that Heavenly Father is watching out for each one of His children.  He knows how we're feeling, and if we ask, He will take our pain away.  Or at least make it bearable.  Which is exactly what happened.  It still hurt like heck, but I could bear it. 

Day before discharge, another infection.  Rota-Virus.  Dreadful thing, if you ask me.  For the nurses and the patient!  Haha.  Spent a week in the bathroom. 

61 days after I was Life-Flighted to Primary Children's Hospital, my mom and I leave (she only left my side to go home once during the whole 2 months).  No, we did not leave.  WE RAN.  VERY FAST.  Except I couldn't run yet, so I walked very fast without falling.  Holding onto instructions for all my 15 medications.

The Plan:  Cytoxan chemo treatments every month for a year, then every 3 months for a year and a half.  I will do another post about that.  Chemo sucks.  That'll be the jist of it. 

Anyway, if you're still awake, I'm sorry!  I didn't mean for this to be so long.  But I hope you can relate to some of my symptoms.  And as you can see, I recovered and got to go home.  Then my life with lupus truly started.  I am now a Registered Nurse and guess what...?   I work at this hospital of miracles.  Primary Children's Medical Center. 

But I got through it because of my faith and strength, the support of my family and friends, and my Heavenly Father.  And you can, too!