Part 3: Struggling with arthritis

Part 1: Introducing lupus – my unwanted life companion
Part 2: Surprise! Your kidneys are broken.


I remember feeling this sense of relief as I was being wheeled out of the hospital the morning after my biopsy. I was hopeful that the worst was over, that now I would have answers, and that maybe I would finally have some relief from the pain.

Unfortunately things would have to get worse before they could get better. I spent most of the first week in bed with a low fever, never really getting much above 100 degrees but never really going away either. My doctors felt it was inflammation from the lupus and not an infection. Given that my arthritis seemed to be getting worse by the minute, this seemed like a fair assessment.

And oh, the arthritis. I’m not sure if my perception now almost eight years later is accurate, but for whatever reason I don’t really remember it being so debilitating until after my biopsy. Although the truth probably is that a lot of what I’m about to recount happened between the night I woke up immobilized by pain through a couple weeks after I started meds about a month later.

I remember pain and random swelling (sometimes where I didn’t even know a joint existed until I woke up with it swollen) and I definitely remember the pain when I woke up crying in the middle of that fateful night, but I don’t remember feeling so completely and utterly crippled.

After the biopsy I was consumed by the helplessness and frustration of not being able to do the simplest things. Brushing my teeth was virtually impossible when I could barely even grasp the toothbrush. Same with brushing my hair or trying to put it in a ponytail to get it out of my face (trying to raise my arms so that they could reach behind my head? ouch! and also my arms just wouldn’t bend that way). Opening a door became a feat of epic proportions (doorknobs = enemy of arthritis). Walking five steps to the restroom? How bad did I really need to go? Could it wait? Could I combine it with another task? And how could I forget the indignity of barely being able to wipe my own ass after using the restroom?

There were times when I would be reduced to tears trying to do any of these simple tasks because I just couldn’t do them and I felt so incredibly broken.

A week after my biopsy my results came back and my diagnosis was officially amended to class III lupus nephritis or “focal proliferative nephritis.” (Click here for more info). Basically this meant that my kidneys were being damaged but only in “focal” areas and luckily it was not class IV nephritis which is the worst type to have because it means the damage is all over. But I was warned that it could easily progress into class IV if it wasn’t treated immediately and aggressively. Class IV nephritis can often result in the need for a kidney transplant if it cannot be brought under control.

It may seem strange but I actually felt incredibly grateful upon reflection of the diagnosis. The news was bad but in my heart I knew it could have been so much worse. If my arthritis hadn’t flared to the point where I was no longer able to function, maybe I would have put off visiting a doctor a little longer, or maybe I would have seen a PCP who would have puttered around for months, not knowing the right tests to run and not seeing all the warning signs that Dr. Miller saw immediately. I’ll never know how long my kidneys would have had because the story played out in my favor. I got the help I needed and I got it in time to make a difference.

Immediately following my official diagnosis, the prescriptions started rolling in. I was put on a high dose of prednisone (40mg) which controls inflammation quickly and is often referred to as a “miracle drug.” It is miraculous in how incredibly fast it can start to work it’s magic but what is not miraculous is the plethora of side effects that can come with it (more on this later). For this reason patients are usually prescribed a very high dose initially and then tapered down as quickly as possible.

On the flip side of that, I was put on Cellcept, starting with a low dose that would be tapered up once it was clear I was tolerating it (gastrointestinal side effects are common). Cellcept is actually a drug given to kidney transplant patients, it suppresses the immune system in order to prevent rejection of the transplanted kidney, but was also found to be effective in treating lupus nephritis patients. Here again, I was quite lucky. When I was diagnosed in 2005 the use of Cellcept in lupus patients was fairly new. Years later when I moved back to the bay area my new doctor commented that my nephrologist must have been quite up to date to have prescribed Cellcept to me back then.

So anyway, I was put on the fast-acting prednisone to control my symptoms in the near term, in order to give the Cellcept time to build up in my system and hopefully keep things under control in the long run. I was also given something called plaquenil which is an anti-malarial drug but for some reason seems to work as an “insurance policy” for lupus patients (that is actually how it was explained to me). It seems to keep people in remission but I guess they’re not really sure how or why.

When I first started on all these meds I experienced relatively few side effects. The prednisone made me want to eat everything in sight, but I really didn’t even gain all that much weight. At least not compared to the horror stories I read about people gaining 50lbs in a matter of weeks. I did put on about 15-20lbs though over the next few years which was a lot given my small previously 100lb, 5’3″ frame. But since I managed to escape this round of medication with relatively few side effects, I’ll discuss the hell of side effects in another post about another flare when I was not so fortunate.

To recap, my biopsy was on a Friday and the following Friday I was given a diagnosis and a bunch of pills to start taking. My parents had to leave but they asked me to come to church with them that Sunday before they were to drive up and I agreed. It had been years since I’d gone to church, I’d drifted so far away from my previous life as a devoted Christian girl that I no longer felt remotely comfortable around “church people” as I referred to them. But for some reason in the middle of all of this, it felt like something I not only wanted to do, but needed to do. So I went.

I don’t really remember the sermon that day. But what I do remember is one of the worship songs they sang during praise.

When the Tears Fall – Newsboys

I’ve had questions, without answers
I’ve known sorrow, I have known pain
But there’s one thing, that I’ll cling to
You are faithful, Jesus You’re true

When hope is lost, I’ll call You Savior
When pain surrounds, I’ll call You Healer
When silence falls, You’ll be the song within my heart

In the lone hour, of my sorrow
Through the darkest night of my soul
You surround me, and sustain me
My defender forever more

When hope is lost, I’ll call You Savior
When pain surrounds, I’ll call You Healer
When silence falls, You’ll be the song within my heart

And I will praise You, I will praise You
When the tears fall, still I will sing to You
I will praise you, Jesus praise You
Through the suffering, still I will sing

Oh You’re so good to me
You’ve always been good to me
So trustworthy

You are faithful and true
Sustain me through and through
You are hope and truth
You’re my spring of living water
You’re my spring of living water
Oh in the lone hour, You’re there
Lord in my sorrow, You’re there
Oh You’re my healer
Oh I need You so

Like a well watered garden
Who’s springs never fail
You’re faithful and true
Like a well watered garden
Like a spring that never fails
You’re my spring that never fails

I was pretty much in tears throughout the entire song, in fact it was all I could do to keep myself from openly sobbing as I sang and drank in these amazing words. These words that were my reality. Everytime the congregation sang that chorus (which was a lot of times – I left some of the times out to avoid repetition) I cried a little harder. When pain surrounds…oh those words could not have been anymore apt. But suddenly I knew it in my heart to be true, that God had been with me through it all, that God still loved me despite my turning away from Him, that in the end God had protected me when I needed it and brought me home to Him like the prodigal son that I was – before it was too late for me. Before my kidneys failed.

After the service the pastor approached us. My sister and several of my cousins were active members of the church and he knew what was going on with me and he asked if he could pray with my family and anoint me with oil. Part of me felt a little awkward about it, I guess maybe it was a bit much for a wayward Christian who hadn’t been in a church for almost four years, but I was grateful for his caring and agreed. As he prayed over me and blessed me and touched my forehead with the oil, I felt oddly comforted though. I felt loved and cared for. I felt like God’s presence was indeed there with us.

I didn’t miraculously recover after that day. In fact, although my mom seemed to be hoping the prednisone would act within a day, it took me several weeks to really feel like I was on the road to normal. The joint pain did start to slowly fade away, but not before I experienced many more days of debilitating pain. My fevers became more infrequent as the weeks passed and eventually I was able to start driving again (this probably took longer because back in those days I drove a stick-shift which takes a lot more joints to operate than an automatic!) and then I finally felt well enough to return to work.

Paul and I kept attending my sister’s church even though it was a good 40 minute drive away from our apartment. As Pastor David liked to say, “A church alive is worth the drive!” and we both definitely felt that way.

I’d love to be able to say, “And that was the last time lupus ever got the best of me” but unfortunately, as you probably already know, that isn’t how the story ends…

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  1. […] Part 1: Introducing lupus – my unwanted life companion Part 2: Surprise! Your kidneys are broken. Part 3: Struggling with arthritis […]