Archive for The wolf

ripped away

So the last few days have been a bit of a roller coaster. A very slow, very predictable, but very unpleasant roller coaster.

On Monday I visited Dr. Kidney who seemed only slightly put off that I have yet to completely wean T or start any of my meds as had been agreed upon during our previous visit a month earlier. He understood that between T going to daycare due to my mom (his primary caregiver during the day) off in a foreign country for two weeks, it was just not the greatest time to deny him the b0ob.

The plan then became to finish weaning T, stat, like in the next few days and switch meds and then see him in 5 or so weeks.

Well, yesterday morning when I woke up, I woke up with a raging headache. I took my blood pressure and it said 169/105. And I freaked the f*ck out because, um…169/105. There was much googling of hypertensive emergency and crisis and the conclusion of my google-ing is that I was close but not quite at the cigar. 180/120 seems to be the “GET YO ASS TO THE HOSPITAL IDIOT” threshhold and I was not quite there yet. So I just cracked into the supply of blood pressure meds that my doctor had been urging me to get onto and realized that this was it. I was unceremoniously giving up breastfeeding because I was suddenly terrified of stroking out at work. Legitimate, but I still felt pissed and depressed that it wasn’t under MY terms.

Anyway, my numbers have gone done steadily (spoke with Dr. Kidney last night and he said I should be much better by today.

The baby seems mildly upset. There are times where he clearly wants to nuzzle into my chest and these moments make my heart shatter and break into a million tiny pieces because…I…..can’t. Wahh.

But really, other than that he seems totally fine. Because let’s be honest he’s a happy little dude and not much seems to bother him. Except eating. Which he seems to now hate with a fiery passion. But that’s a related post for another die.


Pecking this out on my phone so it may not be long. Or complete. Or edited. But I figure I should update since a decision has been arrived upon and all that good stuff.

I saw Dr. Kidney yesterday and he concurs with Dr. Joints (my rheumy) that I should go back on Cellcept for the time being. He wants me to begin the weaning process so that I can switch meds before I come back to see him in a month. He also wrote me a ‘script for a new blood pressure med because he wants to get that under control as well.

Basically I’m on a shitty trajectory and the medical folk would like to get things under control before it all spirals to hell as it is wont to do. So that’s that.

On the work front I am trying to muster up the courage to talk to the boss man today and ask if it would be possible for me to work out a flex time arrangement. I think I will be candid with him about my current shitty health. I hate that in my mind it sounds like an excuse, because really it’s not right? I can’t feel like I’m being lazy because I’m unwilling to work myself into an early grave…and yet for some bizarre reason I do. Must be the Asian guilt.

bitch is back

I am feeling particularly tired and emotional tonight. My body is tired. And my brain is tired about thinking about my body and why it’s so unwieldy and uncooperative.

My body hurts. From my back to my fingers to my freaking teeth. Yes, my teeth hurt.

Not a good sign.

My blood pressure is a mess and my rheumy wants me to go back on blood pressure medication, but I think this would mean I have to wean T. As much as I can logically appreciate the benefits of the end of breastfeeding, the emotional side of me is a blubbering mess about it. Truthfully, our breastfeeding relationship has been at best, a love-hate relationship, but even so, the idea of having to stop now, before we are really ready is a bit gut-wrenching Probably more than it should be. But it feels like once again, a decision is being taken out of my hands and forced on me by my lupus.

Unfortunately as the days tick by and my health deteriorates, I may be running out of options very soon. My blood pressure has gotten scary high at certain points in the last few days and the fact that work has been extra stressful this week has sometimes made me wonder if I could be that urban legend of the person who drops dead in the middle of a stressful moment in the office.

Today I found myself making contingency plans for what happens to Paul and T if I suddenly die.

And so I know that if I have to give up breastfeeding, I have to. Because ultimately I have to be alive to be T’s mommy.

So yeah. I’m praying for a miracle but if nothing changes in the next couple weeks then I will have to make some changes around here.

hey jealousy

The other day, as we walked past the park on our way to get some gelato, my eye was caught by a very pregnant woman sitting serenely in the middle of the grass. There was a man holding a baby, they were playing, pretending she was an airplane as he lifted her around. It became clear that the baby and man belonged to the very pregnant woman and in that moment I couldn’t help it. A wave of jealousy washed over me.

Her daughter, barely walking, couldn’t have even been close to two yet and this pregnant woman looked like she was about to pop any day now. Of course, I don’t know their story, but in my mind, in those ten seconds I watched them, I created an entire narrative of a woman who had gotten easily pregnant both times, sailed through blissfully, had her perfect birth experience and was now on the verge of her next perfect birth experience.

As I looked down at my sweet, beautiful, perfect T, I couldn’t figure it out. Why the jealousy? What is it that I want, that makes me feel this way, when really I’m pretty content with my life as it is. What is it about seeing a pregnant belly that brings out the irrational green eyed monster in me?

When I think about it rationally, it’s not so much that I want to be pregnant right now or that I want another baby right now. It goes back once again to all the shit that hangs over me, all the crap that must be taken into account. All the doctors that must be consulted. I am jealous of the ease with which other people can move forward in their life.

The truth is, I don’t even want to get pregnant yet. I want more time to enjoy T’s babyhood, to immerse myself in being amazed by him every moment I’m with him. I think ideally I’d like him to be about two years old by the time the next baby is born, which means we still have almost a whole year to think about this.

But unfortunately my body is a piece of shit. My experiment of going off my meds has failed spectacularly and my numbers are trending in a bad way. I self-diagnosed and put myself all back on my correct dosages but will it be enough? Will I have a bad flare? Will it push everything off again or will this time be the time they say, don’t do it. Be happy with the one we have. The perfect, adorable one. Which I could be happy with. Because how could I not?

But also, he is so friggin perfect, how could I be happy not having more?

I know this nothing more than the behavior of a five year old, but I want to stomp my feet and throw myself to the ground and scream about how unfair it all is. Unfair that other people’s bodies don’t fail them like this. That other people can live the lives they imagined for themselves. Two and a half kids, white picket fence and a yellow lab .

And me, I don’t know. Just trying to stay healthy. To keep myself going every day. To not do things to set myself back. Stupid lupus.

settling in

The long-awaited haircut unfortunately did not come to pass. Alas, they were all booked up until next Saturday. But I did get to eat a delicious bowl of ramen (with pork belly!) and a green tea ice cream crepe so all was not lost.

My hair though, is still ridiculously long, untamebly tangled, riddled with split ends and has the tendency to fall over my shoulder into T’s face when I’m nursing him. So it still has to go. I’m thinking somewhere cheap and close, it doesn’t have to be a stylish haircut, just one that ends with all my dead ends in a pile on the floor and my hair short enough (but not too short, no “mom” haircut for me thank you!) that I can pull it into a pony tail without having to comb through miles of tangles for half an hour first.

All in all, though, I had a pretty great weekend. On Friday, Paul and I braved happy hour at a trendy, high-end Japanese restaurant in SoMa. I was craving nigiri like nobody’s business and we knew this place had tables with big bench seats that could easily accommodate a car seat so we headed over as early as we could and luckily there were still plenty of those tables left in the bar area when we arrived! T slept quietly the whole time like the little cherub that he is (and yes we did get a comment from the waitress – “Your baby is so good!”) while we chowed down on happy hour snacks, rolls, nigiri and drinks. Since I knew I had some time til I needed to nurse him again I ordered something called the Giddy Geisha – lychee and passionfruit vodka concoction – and it was everything I hoped it would be.

Yesterday we made our way to J-town. Once again at a restaurant (albeit at a totally off-peak hour – 3pm – to minimize the crowd we would have to deal with) and once again we got a comment, this time from a fellow diner, about how good and quiet our baby is.

Today we finally went to this farmer’s market we used to go to literally every weekend. We met up with our friend’s T & V and their new little one, Baby O who is two weeks younger than Titus, but was supposed to be one day older based on their due dates. Except they both decided to come early! Titus just came the earliest so he gets to be the oldest now. It was a gorgeous sunny day and it was so much fun talking to V about what life is like now for us as new mommies. The only downside is that we ended up sitting in the sun for a few hours and even though I was busy shielding T from the sun, I didn’t even think at all about how it would affect me until I got home and realized I’m totally sunburned.


I hope those couple hours of carefree fun in the sun don’t result in a crappy lupus flare.

Please, please, please…just be a sunburn and nothing more. I don’t have the luxury of getting really sick right now.

Speaking of which, I finally did a load of my own laundry tonight and am unreasonably excited about the prospect of wearing clothes tomorrow that are not covered in a fine layer of dried breast milk and spit up. And maybe a little pee or something.

under pressure

My blood pressure has been creeping up over the past week or so. I’m hoping that I’m just fighting a virus (that raises bp right? right??) but I’d be lying if I said I wasn’t pretty worried. I have an appointment with my MFM tomorrow so obviously I’ll bring it up to him then. It just sucks that my home cuff is 10pts higher on the diastolic (lower) reading. I may have to spring for a new (hopefully more accurate) cuff once my FSA for the new year kicks in because seeing the higher number, even knowing that it’s wrong, still freaks me out.


lazy or lupus?

I decided to stay home from work today, still feeling malaise and it is raining out which means my arthritis is acting up.  Or maybe it’s just the fact that I have been sleeping terribly.  I had a nice stretch of sleeping 5hrs at a time but am now back to just about two before I wake up for the inevitable pee break.

I dropped Paul off at work because the poor boy has been quite ill with stomach flu the past few days and I didn’t want him walking to work in the cold/rain, and on the way home I started to feel…well…bad.  Of the emotional/mental sort in addition to my physical ailments.

Maybe it’s just that time of year.  My post-Thanksgiving, pre-Christmas blues.  Driving by my office I felt bad.  Should I really be staying home when I’m not sick as a dog sick?  Somehow my mind wandered to setting a bad example for the baby and then to whether or not I will be a good/worthy mother.

But lupus has really thrown a wrench in my assessment of how guilty I should feel about things like this.

The truth of the matter is, I no longer know how much I should be pushing myself, how much I can physically handle.  How wise it is to power through the small physical discomforts that everyone occassionally faces.  I used to chalk it up to my lazy ass nature, which let’s face it, I’m pretty damn lazy.  I don’t like to push myself and when I was in school I usually didn’t.  And that was all pre-lupus so it was easy for me to scold myself for being a bum.

In my professional career though, which pretty much has run concurrent with my lupus diagnosis, it’s no longer so clear.  I’ve certainly pushed myself, gone to work many times when I probably shouldn’t have.  Put work ahead of doctors appointments that, in hindsight, could have bordered on life/death importance.  Agreed to be in situations that could have had serious long-term consequences for my health in order to be a “team player.”

This year though, as I became serious about putting my health first and then got pregnant, I’ve taken off a lot of days that have felt questionable to me.  And I haven’t known, what is the right thing to do?  I’m terrified that if I “push through” and end up REALLY sick and somehow hurt my longterm health or the baby, I will never forgive myself.  But on the other hand, I still have my work ethic which sometimes yells at me and calls me lazy.

It’s hard to know which is which anymore.  It’s hard to know where to draw the line.  I guess I’m afraid that if I err to far on the side of caution my lazy nature will let me keep drawing it further and further back and I’ll just become that fat, bon-bon eating, creature on the couch caricature of a mom that my kids will be embarrassed for their friends to see.


RIP Sasha McHale

As a pretty avid NBA fan in general, and a Jeremy Lin fan even before Linsanity, I was well aware of Coach Kevin McHale’s leave of absence from the Rockets due to his daughter being sick. I was very sad to read this afternoon that his daughter Sasha passed away yesterday at the age of 23 (some articles say she was 22).

But I was surprised to read that she apparently died of complications from her battle with lupus. I don’t think the McHale family has ever made it known previous to this that she suffered from lupus. As someone who has kept my lupus diagnosis pretty close to the vest, I can understand not wanting to publicize it to allow her to maintain some semblance of normalcy as she went through school and as I’m sure they hoped she would go on to have a successful career in whatever her chosen profession was to be. Sadly, but somewhat understandably, there will always be a level of prejudice in the workplace against those of us who suffer from chronic illness that has the potential to be quite debilitating.

I feel awful for the McHale family and am praying for them tonight. I can’t imagine how hard it must be to bury a child and it must be especially difficult in some ways that Sasha was at the age where her adult life was really just about to begin. I hope that they will become advocates against this awful disease that robbed them of their beautiful daughter long before her time. It’s sad but the fact is that diseases tend to remain relatively obscure until enough celebrity voices, usually those who have been personally affected, bring attention to them. Kevin McHale is in a unique position, with access to many NBA superstars and he could do a lot to bring awareness to the struggles that those of us with lupus face on a daily basis.

Part 4: New normal

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


As I mentioned at the end of the last post, my recovery was not a miraculous overnight healing but rather a slow and steady process. According to my old blog archives it took about three weeks for me to settle into my new state of wellness.

Looking back through my archives it also becomes apparent that my memory wasn’t exactly accurate about the timing of the worst of my arthritis and a lot of it happened before and just after my biopsy (so January-Febuary) and steadily decreased after starting medication post-biopsy.

Once the meds were working their magic, I felt amazing. I felt healthy for the first time in ages, I actually felt my age instead of fifty years older. The prednisone made me voracious but once I started tapering my dose even that side effect faded away. I tried hard to watch what I ate though, knowing that long term use of steroids could cause high blood pressure, diabetes, and all kinds of other fun diseases. I found a book called The Lupus Diet which recommended veganism and what was essentially a celiac diet but I just couldn’t do it! I love meat and wheat too much!

After the biopsy Dr. Miller recommended that I pay a visit to another doctor he often consulted with named Dr. Peng Fan. Dr. Fan was another highly respected rheumatologist in the area (my cousin the UCLA medical resident had heard good things about him) and Dr. Miller felt it might be a good idea to have another set of eyes look over my case to make sure we weren’t missing anything.

Looking back, an important lesson I learned about dealing with chronic illness is just how important it is to get in with a difficult-to-get-in-with doctor for your treatment. Even though seeing Dr. Miller was a complete fluke, being referred through him was the only way I was able to get appointments with a lot of other highly respected specialists who never would have seen me otherwise (or it would have taken a lot longer). Sad to say, but medicine like everything else is partly about who you know, in this case who you know is your doctor.

I was twenty-two years old when I met with Dr. Fan and it was the first time it really hit me that having lupus could affect my ability to have children one day. My nephrologist had mentioned it when he was explaining his rationale for choosing to put me on the Cellcept, but in that aspect of my treatment, I felt like I had dodged a bullet, that my fertility would be preserved and I had nothing to worry about.

You see, prior to Cellcept, they likely would have put me on something called cytoxan which was used to treat nephrotic syndrome but also powerful enough that it is used to treat a number of cancers. As it’s name suggests, cytoxan is a highly toxic medication and one that can basically destroy a person’s fertility. Egg freezing is recommended for young female patients prior to starting treatment because it is that detrimental to egg quality/supply.

Luckily by 2005, there had been several major studies showing the efficacy of Cellcept in treating lupus nephritis patients and so my doctor decided that given my age it made sense to start with Cellcept and only move onto cytoxan if necessary. The Cellcept worked and cytoxan has never been brought up again.

When I met with Dr. Fan he reassured me that Dr. Miller and Dr. Mittleman were taking excellent care of me and that he couldn’t think of anything he would do differently if I were his patient. I remember sitting in his office, he was behind a big desk scattered with papers and thick files (like Dr. Miller he was old school – no computers!) as he flipped through my test results. I didn’t even know all the tests that Dr. Miller had run as I wasn’t used to being an active part of my own healthcare at that point in my disease. So I was a little bit shocked when Dr. Fan brought up something called lupus anticoagulant and exclaimed that it was great news that I had tested negative for it since it meant I wouldn’t be at higher risk for miscarriage. He mentioned that the results could change with time though, so I’d need to be tested again prior to TTC but that so far at least it looked like good news.

Perhaps it was naive of me to think otherwise, but no one had mentioned that lupus itself could cause issues with getting pregnant or carrying to term. But there it was. The first seed of doubt planted in my mind. The first bit of knowledge that made me realize, the path to parenthood might not be so easy for me. Soon after I started reading adoption blogs which led me into the world of infertility blogs.

Life went on after that. I managed my disease. I had regular visits with my doctors. For the most part I did pretty well.

In April 2005 I quit my job at the fundraising company and began working as an assistant property manager. A few months later I would change jobs and industries once again, working as a recruiter for an outside recruiting company, and three months after that I was laid off at the end of my three-month trial period. The job was just not a fit for me, I was not comfortable “selling” people when it came to a crappy job/company, which seemed to be the case for most of the positions we were trying to fill. I think I would have enjoyed it a lot more if it was really about matching people to the best possible position instead of simply merely trying to make commission but as I was reminded many times, we weren’t social workers. But I digress…

After I was laid off in October 2005, I decided I wanted to go back to school. I thought I would be going back for a MA or PhD in Political Science/International Relations but I was contacted by the head of MSBA International Finance program that was just too interesting to pass up. I never thought of myself as a finance person but since Paul had been working in that industry I had, had some exposure to it and felt it was worth pursuing.

It was a one year program, one semester at a CSU in the central valley and the other semester in France! I took the time between October and when the program began in August 2006 to take some pre-reqs at the local community college, my GMAT and really just relax. I caught up on doctors appointments I had had to put off due to my work schedule, I slept a ton, I generally focused on being healthy and reducing my stress. Oh and I also got engaged in March 2006 so I started doing some wedding planning before school started.

Because I would be in France from January 2007-June 2007 my doctors decided they did not want to reduce my meds since they felt like being in France could be a stressful situation and they were not sure how much medical attention I would be able to get there (even though as a student I would be covered by their national healthcare). I was disappointed because I was feeling so good and healthy but I understood their apprehension.

I landed in Paris a few days after 2007 began. It was a pretty tough trip that took almost 24 hours and by the time I was going through my re-check-in at Heathrow I told the airline to please have a wheelchair ready for me when we landed at CDG. I hadn’t slept at all since leaving LAX and knew I didn’t want to start my Parisian adventure sick with a bad flare in a foreign country, far away from my specialists. Luckily I was able to take it easy for a few days and managed to stay in pretty good health despite about a week’s worth of bad jet lag.

Life in Paris was incredible. When I wasn’t in class or doing homework, I was wandering the city, sometimes by foot, sometimes on the metro. I was eating delicious food at restaurants and from street vendors and bakeries. I was taking in the amazing sights and museums, I even got a student pass to the Louvre so that I never had to rush through the exhibits. I lived a very european lifestyle, never rushing, always enjoying, rarely stressing and always drinking plenty of red wine.

So when the three-month supply of meds my mom sent to me in February got stuck in customs and I promptly ran out of Cellcept, I decided maybe it was a sign and I stopped taking all my meds as they ran out.

And I did great. I was healthy and energetic. I didn’t live a crazy lifestyle, I was mostly in bed at a reasonable hour and I was never sleep deprived. I walked a lot (I didn’t really have a choice to be honest) and I ate well. I got my blood checked once in April and my numbers looked completely stable after two months being off the meds.

In May, my sister came to visit and we went on a whirlwind tour of Europe. I got sunburned in Greece which terrified me but I seemed to get over it without flaring and breathed a deep sigh of relief. I managed to lug my own luggage around four different countries without too much arthritis pain!

Eventually though, it was time to come home. Paul had gotten a job near San Francisco while I was in Paris and so much to my delight, I would be moving back to Northern California instead of Los Angeles. Unfortunately, our wedding had already been planned for Malibu a month after my return so we had to do about a month’s worth of long-distance, last-minute wedding planning. All while I tried to find job. And stayed off all meds – I was not even on any kind of “insurance doses” of anything.

Before the wedding there were a lot of sleepless nights spent trying to figure out last minute details (most of which still ended up needing to be salvaged by my awesome bridesmaids!) and I admit, I ran myself ragged. That on top of interviewing as much as I possibly could, and finally being extended an offer for the firm I’m currently with a few days before I was supposed to head south for the wedding.

I knew I was stretched too thin but I had been so well, for so long that I guess I forgot that, that could no longer be the way I lived life. At least not without consequences.

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…