Lupus

I've been totally neglecting this blog, but I think I'll use it sort of as a diary for lupus symptoms.

Boring.  Yes.  But it will be helpful to me over the long run, and I'll leave it public just in case it might turn out to be helpful to anybody else.

David doesn't think I have lupus.  He just studied it, and he says it is not what I have.  He also asked what I take, and when I told him hydroxychloroquine, he said, "That's not right.  That's really bad for your kidneys.  And lupus attacks your kidneys.  They shouldn't give you that for lupus."

Nevertheless, it is what they give you for lupus.

For years I'd been tired and achy.  I thought it was "just me."  Honestly, I've never been a high energy person.

In elementary school when we had to run the 600 yard dash, I always finished last, in a straggling group of kids with profound special needs, limping along, clutching the stabbing stitch in my side, embarrassed and blinking back tears.  The kids in the neighborhood called me "the strike-out queen," and made great fun of me when we played neighborhood baseball games in the Reifenbergers' back yard.  I could not hit a badminton birdie to save my life.  I could not do a cartwheel.

I figured out that eating a couple of jellybeans on a Sunday afternoon from the jar on the shelf at Grandma Rainbow's house would give me a wicked stomach ache during evening church.

In high school I learned that all-night events were not for me, and if I did attend one, I knew I needed to take my sleeping bag to the quietest corner I could find and bed myself down shortly after midnight, or I would be sick.

I never pulled an all-nighter in college.  Not once.

I figured out that aspartame gives me wicked, metallic-tasting migraines.

When I worked, briefly, as a college graduate, I was sick literally every morning, fighting nausea on the commute in to work. Then I got pregnant and couldn't get out of bed for about two or three (or four?) months straight, due to the intense nausea and dizziness.  How the Lord upheld me through four pregnancies, I will never understand, but I am so thankful for my children.

There were points of life when I could cope, and points when I was simply awash in overwhelmedness and despair.  When the kids were little and I was up an average of 5-6 times per night with them, I crashed and burned.  I was the Worst. Mother. In. The. World.  Somehow, by the grace of God, I kept them fed, changed and bathed.  I washed clothes and cut up fruit.  We went to the grocery store and the library, and we read books.  We survived.  However, there were days when I wanted to just call someone, some social worker, and say, "I cannot do this.  I am dying.  I need help."  But I was afraid that if I did, they would take my babies away and I would never get them back.

When they all got into school, I started trying to catch up on the sleep I'd lost over the previous years.  When they were teenagers, we all slept until 10 or 11 on Saturday morning.  I still felt as though I was in survival mode.  There were all these things I wanted to do, and no energy to do them.

My initial symptoms were fatigue, dizziness (things like being unable to stand in a long line at a store to check out without getting very woozy), neck and back pain, aching knees, and dry eyes that would unexpectedly and unexplainably start to tear violently sometimes when I was driving for more than an hour.  Also, extremely sensitive teeth.

When Jonathan was a senior in high school, I got a job teaching English and it almost killed me.

Leading up to the job, I'd started to have some trouble with diarrhea.  Once I started the job, the diarrhea became severe.  I couldn't keep anything in me.  I ate just enough (tea and yogurt mostly) to get me through a day at school.  I'd have to time my yogurt cups so that I could run out of my classroom during study halls and not during classes I needed to teach.  I tried to eat as little as possible to enable myself to have as few runs to the restroom as possible, but I still ended up in the school bathroom at least 3 times a day.  This was every day.  Literally, every day.  No hyperbole here.

I ate most of my food after I got home, because I was starving.  The result: I was up multiple times every night with diarrhea.  When I arose at 6:30 a.m. to head out for another day at school, I was never rested at all, especially since I was up past midnight most nights trying to grade and to get my lesson plans in line for four different classes (7th grade English, 8th grade Bible, 9th grade English and 10th grade English -- my first year ever teaching, no set curriculum to work from).

I had diarrhea from May 2012 through August 2013.  It was worst while I was teaching, September 2012 through January 2013.  I lost 11 pounds.  When I quit teaching, the diarrhea continued, but I was just so happy to be at home with it rather than at school with it, I almost felt as though I was healed.

During that time, I also developed a pain in the fronts of my shoulders, in that indented area between your shoulders and your front ribs.  it was intense.  We wondered if it was rotator cuffs.  It hurt right down into my arms, sometimes to my elbows, but was worst in the indented area.  Things that hurt included:  putting my arms into sleeves, trying to close the back of the van, and trying to find a comfortable position in which to sleep (there was none).

My wrists also became painful during that time, which I noticed most often when exiting school by pushing on the crash bar.   However, this pain was what I would classify as "bearable," whereas the pain in my shoulders was nearly unbearable, so I didn't pay much attention to the pain in my wrists.  Once I was at the doctor and the nurses were feeling my joints.  They were squeezing and twisting, and working over my wrists.  Finally one of them asked me, "Doesn't that hurt?"  When she called my attention to it, I realized that it definitely was hurting, actually pretty sharply.  But I was so used to ignoring it, it had not registered until she pointed it out.  I said, "Yes!  It does hurt!"  She said, "I would think so.  The joint is quite swollen."

A sad story:  often at home with the kids, instead of recognizing that I was in pain, I would just get crabby.  I'd lash out at them, and they'd flee the kitchen, leaving me to work alone (as I deserved).  But strangely, often David would recognize that I was in pain when I did not realize it myself.  He would come behind me and start rubbing my neck, and the relief that flowed through my body would just make me physically sort of deflate, although I was generally able to keep from crying.  He was not afraid of me.  He was sympathetic.

Anyhow, I didn't get to the doctor until after I quit teaching in January 2013.  He started running every test known to mankind in connection with diarrhea, except he didn't order a colonoscopy, which I thought was weird (but I didn't complain).

In the meantime (I forgot to mention) I was getting extremely heavy menstrual periods for 7-9 days, every three weeks.  Literally, more than 1/3 of my life was consumed with bleeding.

By the time I was diagnosed with lupus, I was quite anemic, on top of everything else.

The day the doctor called and told me I had lupus, I was actually relieved.  It didn't feel like a sentence, it felt like an answer.  It's lupus.  There's a reason why I feel sick.  There's a reason why I am always so tired.  There is medicine.  This was in March 2013.  The doctor told me that I had lupus, that I'd need to take hydroxychloroquine for the rest of my life, and that it would take 2-3 months on the medicine before I noticed results.  He said I should take 400 mg per day, but that it is upsetting to the stomach, so I might want to start out with 200 mg. and see how it went (I still had constant diarrhea).  I never went up to 400 mg. but sometimes I take a pill in the morning if I suspect that I forgot my pill the night before, and I don't worry if I accidentally got a double dose.  Double is better than missed.

I started on 200 mg. and within two weeks, the pain in the fronts of my shoulders had subsided.  I could finally sleep!  After a few months on hydroxychloroquine, I noticed that when we had a weekend trip (like to take kids to college), I was bouncing back much faster, feeling normal after a day at home, rather than being knocked back for a full week as I used to be.

We had to sell our house and move across the country between May 2013 and August 2013.  It was a very stressful time, especially the last week of July 2013.  However, I did survive.  I made it.  Very oddly, the day we arrived in our house here, my diarrhea shut off.  Just like that.  I have no idea what caused me to have diarrhea for 14 months, or what suddenly stopped it. 

In October, on Halloween, I had a breast biopsy to check some suspicious lumps (they were benign!), and on December 5, 2013, I had a hysterectomy.  I believe that the hysterectomy has helped with the anemia due to mitigated blood loss.

I had a severe stomach flu two weeks after the surgery and dropped back down to-- well, I'm not sure.  I don't know where our scale is since we moved.  But all my pants fall off me now, and even the tightest hole on my belt buckles is loose on me.  Yesterday I wore yoga pants and reveled in the fact that they didn't fall down OR require a belt!

We aren't completely settled in our new house yet, and we've been going through a kitchen remodel, which has been quite a bit more stressful than we had anticipated.  But that's pretty much my story up to this point.

The latest developments are probably fuzzy brain (I have trouble keeping track of my medical records because I can never remember the passwords to my accounts online), and increased stiffness after I spend time reading or studying or working on the computer.  I also suffer quite a lot from being cold.  I've been trying to avoid gluten, and I find that if I cheat on that now, I tend to get a migraine or have my lower back "go out" shortly after the cheat.  Recently, my eyes and neck have been giving me less trouble.

Sometimes I feel very thankful that my lupus is as mild as it is.  I am pretty used to the way I feel, and I don't expect to feel different.  I don't expect to be able to do things that require great outpourings of energy and physical activity.  I am grateful for the sun that shines and the air that I can breathe.  I am grateful when I can go for a walk, or relax with a cup of creamy, hot tea.  I am grateful for bananas and kefir and all of the things I can eat that fill my belly and make it feel nice.  I am grateful for a warm house and a comfortable bed.  I am thankful that I can look forward to eternity with a restored, healthy body.  It's going to be okay.