transcended.net

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.

Sigh.

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 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.