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.