Living with Lupus

Sometimes people ask me what it is like to have lupus.

There is this famous explanation: here.

I think a lot of the stuff I see about lupus on the internet is kind of whiny.  I might take a lot of flack for saying that.  I understand that many people with lupus are sicker than I am, in more pain than I have, and they have more difficult lives than I live.  I don't mean to downplay that at all; I just wish there were a way to help healthy people understand our lives without expressing a lot of self-pity.

My lupus is not in remission.  I need my hyroxychloroquine.  However, with my hydroxychloroquine, my symptoms are quite well controlled.  It is truly miraculous how so much of the pain that I was used to living with has gone away since I began this drug.  I only take 200 mg per day, half what my NY doctor wanted me to take.  My doctor here in IL is big on lower doses of medicine.  I like that.

What I don't like about lupus is this: it's expensive and you never know what is going to happen next.

This is how I would describe lupus:

You go to the doctor four times a year.  Before you go, you have to remember to go to the lab where they will run a myriad of tests on your blood and urine every three months.  These tests track the damage that lupus is doing to your body.  They want to track where it is attacking, catch it early, and then treat your symptoms before they progress too far.  Particularly, they watch your kidneys and your heart.  These tests are very expensive, $1000 to $2400 per time, which is rough when you have a high deductible insurance plan from the Obamacare marketplace and you pay out of pocket for your first $12,000 of medical expenses per year.  Most of the time, the tests don't turn anything up, which is something to be thankful for, except that it is a very expensive way to achieve peace of mind.

While you are at the doctor, she asks you all about how you feel.  You may be feeling pretty good, or you may have had some weird random symptoms.  (Or you might be doing very poorly, but so far, in my case, this has not coincided with my doctor visits.)  The last time I went, I'd been having weird, random pains in my big toes, shooting pains that woke me up in the night and kept me awake.  My left thumb was also sore; it hurt badly when I would wash my hands and rub my fingers and thumbs together.  I mentioned these symptoms to my doctor, wondering whether they meant anything or predicted anything or were related to anything.  My doctor told me that I can take ibuprofen for the pain.  Yes, I paid for a specialist doctor appointment to be told I could take ibuprofen for my pain.  That's how it is with lupus.

With lupus, you never feel great, and you sort of get used to it, the constant lack of energy, thrumming in your head, tightness in your joints, low-level nausea, neck pain.  It becomes your normal, your baseline.  But then, when the symptoms ramp up, when the head and neck start to hurt badly and you really can't face your food at all, it sort of creeps up on you, without your noticing, until all of a sudden you just feel really, really, bad, your whole body aches, and you don't know what to do.  I recently had a couple of days like that, where I just wanted to bury my head in my husband's chest and cry because I felt so bad, and I wanted him to make it go away, and I understood why sick babies fuss.

Lupus affects my eyes.  I don't know whether it is the lupus itself attacking my eyes, or the hydroxychloroquine, which has a side effect of destroying vision.  After over 40 years of having 20/20 vision, suddenly I can't see well at all anymore, and I have a terrible time keeping track of my glasses.  I fear going blind.  I try to look hard at things every day, my flowers, my dogs, the rooms in my house, the faces of the people I love.  I want to get these things into my head and remember them.  I worry about how I will find things I if I lose my sight.  I have a lot of trouble reading.  I still love to read, but I read much more slowly.  It tires me out.  And often my reading glasses make me sick to my stomach for some reason.

I try to forget that I have lupus for the better part of the day every day.  I try to not think about the things I cannot do.  I try to simplify my life and be thankful for what I have, what I can get done.  If I can't paint my rooms and move furniture and hang pictures, I can be thankful that I have rooms, and that they have everything we need for eating and sleeping and keeping clean and dressed.  If the walls are not colors I would have chosen, at least they are walls, in good repair. 

I can walk my dogs, read my Bible, pray for my children, and usually I even have it in me to shop for groceries and make meals.  I am so, so very thankful to my husband who works hard to provide for us and never complains about my lack of contribution (or my medical expenses!).  I am thankful that this didn't develop until my kids were big and independent.  I am thankful for essential oils and epsom salts and the soaking tub in my bathroom (that I never would have put in, but it came with the house).

Lupus will shorten my life, but it will not ruin my life.  I have lots of  good days, and the bad days help me to recognize and appreciate the good days all the more.  Having lupus makes me conscious of the need to love people, every day, as much as I can while I can.

Lupus is not the worst.  It will be okay.  And heaven will be all the sweeter because of it.