Team blue! So far, so good but more details tomorrow.
We will never forget
Eleven years ago, the world changed forever. For my generation it is certainly the moment where we can ask each other, “Where were you?” and everyone will remember with complete clarity exactly what they were doing and how they learned that our country was under attack.
It was a horrific day. It still is. I remember clearly being glued to the TV all day with a blanket wrapped around me and the tears that kept coming as the terrible images flashed before my eyes. I remember the body counts, that were really only guesses, the people running who were covered in dust, hearing about all those first responders who so bravely ran in to help only to be crushed along with those they were trying to save when the towers came down. I remember the surreality of it all. I remember hearing stories of heroism, those who tried to save others on their way down, and the families who had loved ones stuck above where the planes struck who knew there was little, if any, hope. And I remember praying. A lot.
When it happened I had just returned from a long trip to NYC. Many afternoons spent wandering the city with my little sister, reading in Central Park, enjoying nice restaurants with my cousin G, and generally falling madly in love with the city. It made the attacks hit that much closer to home because the city had become a place close to my heart. I remember coming back to California and missing the feeling of being dwarfed by the breathtakingly tall skyscrapers. I loved that skyline so much and will always remember sitting on the pier in Hoboken with my cousin D and my sister staring at it on a clear night, beautifully lit up in all its man-made perfection.
Like so many others, 9/11 changed the way I viewed the world. It was in many ways the moment I grew up. Up until that day I honestly cared very little about politics and yet after that I ended up choosing political science with a concentration in international relations as my major. I began to care a lot and dig into the politics and history of war and formed pretty strong opinions about the ways America would be kept safe from future attacks. In fact, 9/11 is probably why this blog was focused largely on politics for the better part of 4-5 years. These days, I have gone back to mostly avoiding controversial topics (I now reside in a more liberal part of the blogosphere (personal blogs) and fully recognize that I’m not changing anyone’s mind) but I still hold pretty strong opinions and am always happy to discuss if someone wants a level-headed, no name-calling, spirited debate.
I was a prolific blogger back in those days so I have many updates and wanted to share a few of them. Please also keep in mind I was 19 years old at the time I was writing this.
9:20am
i went to bed around six o’clock this morning and around seven thirty my mom burst into my room and told me the world trade centers had been collapsed. my dad appearantly stopped on his way to work and called her panicked because my cousin g works literally next to the World Trade Centers. luckily we got through to him and he’s safe. he said he got to work late today so just as he was about to step into his building he saw two planes crash into the WTC and then “people were jumping out of the building. they all died.” i wish i could capture his voice when he said that. total shock, it’s almost like he was saying it to make sure it was real. he’s walking the 70 plus blocks home, he said they were all running and by the time he stopped running he was at 20th street so he figured he could just walk the next 50 blocks. it’s so surreal. it’s new york for god’s sake.
it’s so weird just because i was there. i had dinner in the financial district, i hung out in an apartment right there, my cousin i lives like less than a 15 minute walk away from the seaport. my stomach aches, my head hurts and i feel like throwing up or crying. i wonder how many people died. i wonder why anyone would do something so fucked up and so god damn pointless. what point are they trying to prove? why do they want to kill thousands of innocent civilians? why? and now the United States is going to kill thousands of them. what the fuck is the good in all of this?
11:35am
the new york skyline is buried in smoke. it will never look the same again. how do we recover from something like this? it just hit me how lucky my cousin is. you see, he takes the subway to work in the mornings and the station runs beneath the World Trade Center. somehow God saw to it that he was out of the subway station and not yet inside of his building when everything started going to shit.
grace: and this kid from my floor right now just said that one of his mom’s friend’s daughter was on that boston flight and she was able to call her mom and tell her that she loved her right before it crashed
there is no possible justification or reason for this kind of shit. it’s depressing that people can do this to each other. it’s things like this that have slowly destroyed my faith in humanity. so we really are evil.
7:04pm
i took an hour long nap and woke up just in time to hear bush’s speech. i thought he did a good job, he didnt look nervous or scared and he was very soothing but firm. all in all, not a bad job. still, the whole thing feels like the world’s shittiest dream, like maybe i’ll wake up and the twin towers will still be standing. at least two hundred firemen died trying to save lives. 10,000 are estimated dead. three buildings have forever disappeared from the new york skyline. but the scariest thing is the sentiments some Americans are expressing. i want the people who did this to be found, caught and killed, but i disagree with the way some people are pointing the finger and calling for blood with no real idea of who is the cause of this.
however i think this is also, in a very little way, uplifting. because you see how the citizens of the United States have reacted to this. there are two hour lines to donate blood. there was no reported lootings in new york city. around the country immediately after the attacks local governments did everything they could to prepare against more attacks and secure their cities. i guess that’s the little ray of hope amidst all this destruction and evil.
11:41pm
you know how new yorkers have this reputation for being assholes and unfriendly. well when i was there i found that to be really untrue, but no one would believe me. but look, tons of people have volunteered to dig people out of the rubble and so many people showed up to donate blood that they had to tell people to go home and come back tomorrow. i wasnt in new york for very long but it’s an easy city to fall in love with. i can’t imagine how this event will have changed it.
Eleven years later, I’m glad to say that our country is strong and resilient and it has changed but we rallied together to rebuild and will continue to do so. I believe now more than ever that this is the greatest country on Earth and that we can overcome any challenge with dignity and grace.
We will always honor those that were lost, we will never forget them, and we will keep fighting the good fight against the evil in this world that would like to stamp out the freedom and liberty that we stand for.
Category: Navel gazing /
17w3d update
When I first found out I was pregnant I was planning to write a lot more pregnancy updates. But so far they have been pretty few and far between, mainly because I don’t feel like enough changes from week to week to actually warrant a whole update.
But I guess now that almost ten weeks has passed since my last pregnancy update it might be a good idea to post about how things have been going…
Symptoms:
Cravings:
State of the Bump:
Movements:
Blood pressure:
Medications/supplements:
Gender:
Coming up:
Category: Baby talk /
the book we love to hate
While browsing through my F*book feed this morning, I was greeted by the oh-so-familiar F*book pregnancy announcement of a high school acquaintance (you know, the one you’re not even sure why you are “friends” with because you literally haven’t spoken to each other since like junior year of high school, but they added you and you didn’t want to be rude so you accepted?). Belly shot with a little tag hanging off saying “Do not open until (due date)”, an ultrasound image, and a pic of her hubby pretending to listen to her belly with a stethoscope. Cute right? (Nevermind she is only about 14 weeks along so he would not be able to hear anything but perhaps placenta gushing with that stethoscope…).
So why then did it bring back those old feelings of hurt, jealousy and longing? Even as I could feel the soft twinges of my own little one dancing around in my womb, it was like a part of my brain was shut off to the fact that, oh wait! I, too, am pregnant.
I still have a lot of unresolved feelings towards the idea of a F*book announcement. I know what it can do to those who are silently in the trenches. The ones who smile and hold back the tears in public when people talk about pregnancies or babies. The ones you would never know about. Which, let’s face it, is most of us who struggle with a disconnect between what our hearts want and our bodies are capable of.
Needless to say, I have yet to make a F*book announcement myself and I’m not really sure if I will. We are certainly “out” but most of our “announcing” was done face-to-face or over the phone, chat, or in one case email (a friend who I know is trying herself and was a bit worried before they started trying because she is a little bit older – I didn’t feel like it would be fair to tell her over the phone in case she needed time to process it).
The more I think about it, the more I lean towards not doing any sort of F*book announcement. I wonder, what would be the point? To get congratulations from a bunch of people who, in reality, I barely know? That’s exactly why I removed my birthday from F*book, because I don’t really care for that stuff. I’m perfectly fine with the ten or twenty friends and family who actually knew it was my birthday without F*book reminding them being the only ones posting on my wall as opposed to 50 or 60 people who will post that one “Happy Birthday” message to me once a year.
There is, however, apparently a timeline feature that allows you to enter in a due date onto your timeline if you are expecting. I’ve been kicking around the idea but am still hesitant for all the reasons listed above. It’s a bit more understated as opposed to the ultrasound picture or the giant belly shot but….
At the same time, if the Hawaii trip happens I would like to post the maternity shots we take over there and wouldn’t it be better to have at least some sort of little understated, oh by the way….message up so anyone who wants to hide me can? And am I completely over-thinking this (and that would be out of the norm, how?)???
Maybe it’s not that big of a deal. Maybe the world doesn’t revolve around me. Maybe the fact that I’m pregnant won’t cause anyone else distress because maybe everyone else is a bigger person than I apparently am. But I just can’t help but wonder, will I be inadvertently hurting someone who will never know just how much I actually have in common with them? I wish there was some sort of infertile (or pseudo-infertile, in my case) bat signal that I could put out along with any kind of “oh by the way, I’m pregnant” post to let them know that this wasn’t easy, that I get it, and that the last thing I want to do is upset anyone. And that if they want to talk, I’m here and I totally get it.
Seriously, the IF community needs to get working on that.
Conclusion to all this rambling? I think I will probably do the timeline thing at some point (maybe after 24 weeks) and in the meantime try to figure out how to alert any lurking IF-ers in my feed that my heart is still with them.
Category: Navel gazing /
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
Jesus
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…
Category: Lyrically speaking, The wolf /
we now interrupt your regularly scheduled broadcast for some bullet points
*** I was surprised to get some labs back through my iPhone app last night, surprised because they came from the SF lab which hasn’t been online, up until now apparently. Yay for technology!
Anyway, I started at the bottom with my urine results and they were perfect. “NEG” across the board (for protein, blood, and everything else) which is better than my pre-pregnancy baseline. Next I checked the Comprehensive Metabolic Panel (blood test) and my creatinine was sitting pretty at 0.9, my protein was well within the normal range (when blood protein is low it can mean it’s being leaked out in your urine, which is bad) and my albumin was a little low vs previous results but according to some standards still normal (same issue for blood albumin as blood protein). Something to keep an eye on, I thought to myself. Also, Dr. MFM had talked to me about how blood creatinine is actually supposed to decrease during pregnancy so he thought by 20 weeks we could expect to see it at 0.8, therefore even though 0.9 is good, it could be better.
The last result was my CBC (complete blood count), at this point I was feeling pretty good about things but of course, there had to be a “but.” My anemia continues to get worse. Whereas pre-pregnancy I was hovered around the low end of normal, I am now all the way down in “mild, almost moderate anemia” range with my hemoglobin at 9.7. According to Dr. Google the cut off between mild and moderate is 9.5 so I’m right there, but luckily still have a ways to go until I get to “severe” which is under 8.0.
You may recall that “severe anemia” is one of the contraindications for flying while pregnant so if things continue to get worse we will likely have to cancel our Hawaii trip. But I’m more concerned about what my lack of blood means for the baby. I’m assuming it can’t be anything good? I have an appointment with Dr. D (regular OB) this Wednesday and will definitely be bringing this up but I feel like maybe I need to send Dr. F (rheumatologist) an email and give Dr. MFM a call about this as well. We need to head this off before I’m in blood transfusion territory! I need to know if I can “fix” this by just eating more protein or if it is hemolytic anemia (meaning my red blood cells are being cannibalized by my immune system) if it might be necessary to increase my prednisone (really hoping I can fix this through eating because I HATE being on more steroids).
*** I’ve decided to enroll in a UCLA extension online course called Development in Early Childhood. I think I’d like to do their certificate programs for Early Childhood Education but even if I end up just taking this one course, it should be useful (or at least interesting) given the fact that I’m about to have one of those little humans running around the house. I’ve been known to have a lot of random dreams for what I want to be “when I grow up” (What do you mean I’m grown? When the hell did that happen?) and the latest is to someday start a bilingual daycare. I think given the demographics of the bay area and the growing importance of China (and thus Chinese) this is not a completely crazy dream. Perhaps I shall elaborate on this a bit more at some other time though because a bullet point probably isn’t enough.
*** I haven’t felt the baby move anymore, at least not for sure 🙁 My coworker who is two weeks ahead of me told me I’m “lucky” because “it tickles and is distracting.” Sigh. Maybe I’m okay with not being a normal preggo after all. If it means I’m going to enjoy and cherish every single bit of this pregnancy, then I guess, in a way, I’m sort of lucky.
*** Unfortunately I’m a back sleeper and I think I’ve reached the point in pregnancy where that’s a no-no. I’m really trying to avoid one of those giant pillows (because I already share the bed with a 20lb cat and 180lb hubby. Not a ton more room to go around.) So far using hubby as my “body pillow” seems to be working somewhat. I use him to keep my body tilted at a slight angle when I can’t stand outright side-sleeping anymore.
Category: Baby talk, Navel gazing /
Part 2: Surprise! Your kidneys are broken.
Part 1: Introducing lupus – my unwanted life companion
So it was now the end of January 2005, I was 22 years old and had just been diagnosed with lupus. My rheumatologist strongly suspected kidney involvement because, well, my pee was apparently filled with blood and protein but no bacteria (which would have been present with a bad UTI). He didn’t want to start me on any medications until a) he knew for sure the kidneys were being attacked and b) if they were, the extent of the damage.
Maybe it’s time to pause the story for a moment and explain exactly what lupus is for anyone who might be unfamiliar. Lupus.org is a great place to get more information but I’ll give you the quick and dirty here. Basically, lupus is an autoimmune disorder in which your immune system begins attacking your healthy tissue. So far no one really knows why this happens and there is no cure, only treatments that keep symptoms at bay. Most of these involve destroying the immune system so they aren’t exactly pleasant, but they seem to work so it is what it is. Since the definition of lupus is pretty broad, it can affect each person differently. Some people only have arthritis and skin issues, others, like me, have organ involvement. It can affect just one organ or several, and what is affected can also change over time. Recently Toni Braxton has announced that she has lupus affecting her heart and Nick Cannon (Mariah Carey’s husband) has lupus nephritis (kidney involvement). 90% of lupus patients are women and it also disproportionately afflicts minorities.
But coming back to my own story, my rheumatologist Dr. Miller immediately referred to me to Dr. Joel Mittleman of Cedars Sinai. I found out many years later that he was the nephrologist that did Nat King Cole’s daughter’s (Natalie King Cole’s sister) kidney transplant (maybe there is something to the whole six degrees of separation thing!). He was a busy doctor but since I was referred as an urgent case I was able to see him within a few days.
Dr. Miller had mentioned to me that it was possible Dr. Mittleman might recommend a kidney biopsy be done. I still couldn’t believe there was something wrong with me beyond the arthritis, it had just never occurred to me that there might be something else beyond what I could actually feel. I couldn’t wrap my mind around the fact that my kidneys might slowly be failing no matter what my labs were saying.
When I met with Dr. Mittleman, he had spoken with Dr. Miller and gone over my records and he said he really did think it would be best if I had a kidney biopsy as soon as possible. He explained that while there are urine and blood tests that can be run, because the kidneys are very good at compensating for damage (i.e. if some filters are destroyed, others just work harder until too much has been destroyed and the kidneys fail. This is why someone can suddenly present with kidney failure despite very few warning signs) the only way to know for sure how badly damaged they were was to study the tissue itself. For that they would need to insert a needle into my back (under local anesthesia) in order to remove a tiny piece of kidney. This would be done twice and both samples would be studied for damage and based on how damaged the samples were they could extrapolate how much damage had been done to the kidneys overall.
As shocked as I was by the lupus diagnosis I was even more in shock hearing that I would need to have this procedure done, one which involved an overnight hospital stay. I had never had to stay in the hospital before, I had never had any kind of procedure done in the hospital, I had always been a fairly healthy kid and never so much as broken a bone before.
My doctors proceeded with a sense of urgency so I didn’t exactly have time to absorb everything. The biopsy was scheduled for a week later so I had time to tell work what was going on, that I would need to be out, maybe for awhile. My boss at the time was known to be a bit of a tyrant but she had suffered health problems herself and was very understanding, they told me to take all the time I needed. My parents wanted to be with me for the procedure so both of them drove down and stayed with me for the week following the biopsy. This was the first time I could remember my dad taking time off work with no notice.
I was scared of the procedure itself. I have always hated needles and blood and believed myself to have a really low tolerance for pain so everything about this terrified me. The idea of being awake for the procedure didn’t help things but I was told general wasn’t necessary for something like this.
We went to the hospital early in the morning, I filled out a million forms and was eventually asked to change into hospital gown and had an IV placed (again as someone who hates needles, this was a ton of fun – NOT). I was led back to the procedure room where my doctor and a few other people in scrubs and gowns were waiting for me. I can’t remember if I was given any sort of sedative or not but I was told to lie face down and given the local. Eventually it was time to start the biopsy and Dr. Mittleman walked me through what would happen. I was told to hold very still (I was so scared I was going to accidentally flinch or move) and I felt pressure when the needle was inserted. He told me he had gotten one piece and was going to be going in again for the second. It was all over pretty quickly and then I was wheeled to a hospital room.
After this my concept of time is pretty fuzzy. Cedars Sinai only has private rooms and I remember it was not an unpleasant room. They said they would bring in a fold-out bed later on because my mom had asked to stay with me overnight. I was told they needed me to stay in bed for about 24 hours to reduce the risk of internal bleeding. I wasn’t even allowed to use the bathroom – I had to call the nurse for a bedpan. Luckily I managed not to go #2 during my stay!
At some point my family and Paul left to go to the cafeteria and they came back saying the food was amazing. I don’t remember anything about the food I was given, I don’t think I had much of an appetite and I was pretty out of it because I think they were giving me painkillers at that point. A nurse would come every few hours (including in the middle of the night) to take some blood. More needles, ugh.
Finally it was nighttime and I was given something to help me sleep. My nephrologist had come earlier in the day I think, but my rheumatologist came after I had been given the sleeping pill so it must have been past 9 or 10pm (he was a workaholic!). I remember being so appreciative that he had come to see how I was. I didn’t sleep all that well because of being woke up every couple hours for a blood draw (sidenote: how are you supposed to recover when they don’t let you sleep?).
By the morning I was completely ready to be out of there but had to wait for my nephrologist to come and release me. He finally came around 9 or 10am and I was asked to sit up for the first time in almost 24 hours. I was allowed to get up and use the restroom but when I got back to my bed I was dizzy and my blood pressure was too low. They decided to give me an IV of saline solution to help raise my blood pressure and I remember feeling secretly relieved that at least I didn’t get the IV put in for nothing! I was told to rest for another hour after which my doctor came back and I was finally released.
I was told what to watch out for, signs of infection or internal bleeding and that I needed to take it really, really easy and was not allowed to do anything remotely strenuous.
For my part, I was just glad that it was over and I was going home. I was hoping we’d have some answers soon and that the worst was over, unfortunately as far as my symptoms went, things were only about to get worse…
Part 1: Introducing lupus – my unwanted life companion
Despite all evidence to the contrary, this is not a pregnancy blog.
It’s just that, for a variety of reasons, I actually don’t get to talk about the baby and pregnancy very much in real life and so this blog becomes my space for that. There are only a few people in my life I have been able to just blab and blab to about all my thoughts and fears about pregnancy, or just things that I find downright interesting and am surprised I never learned in sex ed or bio class!
But as much as I will inevitably talk about pregnancy over the next six months, followed by baby updates, I think it’s also time for me to talk more in detail about my past and how exactly I got here.
It’s interesting that despite having kept this blog pretty religiously over the past twelve years of my life, huge chunks of my life are glaringly absent from this space. Things that I never wrote about at all or wrote about in very cryptic ways to avoid people knowing what I was really talking about or going through. A lot of this was due to not really knowing who was reading, being afraid of how it could someday affect my career path, and of feeling judged but not knowing who was judging me.
I’m not completely over any of those fears, and the idea of my parents finding this place still freaks the bejeezus out of me, but now that I am basically “out” at work, I do think it’s time to share more about my experience with lupus and how it has affected every facet of my life.
In a way I feel like I owe it to the 1.5 million fellow Americans who suffer along with me, mostly in silence. There is so little attention given to this disease that affects so many, this largely invisible disease that has only recently started to have any big name advocates to bring the spotlight on those of us who have to live with pain and illness every day. My story probably won’t change much in the grand scheme of things, but I know that every time I come across the blog of someone else writing about their lupus and how it affects them, it is comforting to realize that there are others out there who get it. Others out there who want more research, more answers, and hopefully someday a cure, every bit as badly as I do. Sometimes it’s enough just to know I’m not alone.
I’m not really sure where the story truly begins, but I guess the best place to start would be my senior year of college, the first time when looking back, I had clear and unmistakable signs of a lupus flare.
My boyfriend at the time, The Marine, had just returned from Iraq and our relationship was falling apart like a band-aid being peeled ever so slowly off raw skin. It’s a post for another day (one I really do plan on writing) but the gist of it is that he wanted to return to the “normal” life of a college sophomore (where he had left off before the war) and I was about to graduate and truly believed he was The One. I think on some level he did really love me and on another level he might have felt guilty that I had waited for him and so he couldn’t bring himself to break-up with me right away when he returned and knew that he didn’t want the responsibility of a long-term girlfriend who had her sights set on marriage.
Anyway, it was a tumultuous year. I was jealous, insufferable and clingy. He was emotionally distant. And we were trying to maintain a long-distance relationship since I was still in LA and he was attending UC Santa Cruz.
On top of relationship stress I was worried about finding a job after graduation. I found myself about to graduate from college and still had very little idea of what I wanted to be when I grew up. Except I was about to be a grown up. Oops.
Obviously my problems were all what you would call “first world problems” but they were my problems nonetheless and they did stress me out. And as I now know, stress can contribute greatly to lupus flares.
It started small. The joint in my right elbow would lock up. I attributed it to too many computer games. I even saw a TCM practitioner about it, as well as a PCP at Ka.iser and was told it was a dislocated thumb (TCM) and tendonitis (PCP). This was during Thanksgiving 2003.
The pain in my elbow would come and go, worse somedays, better others. The ex finally put me out of my misery during Spring Break of my senior year. I was devastated but also determined not to show it. I partied, I worked long hours at my internship, and I finished my last quarter of college.
Edited to add: I forgot to mention the small but, I think, important detail that after the breakup I started tanning. I had always been pale but living in LA the pressure to have at least some color on my pasty body finally got to me when I was back in “attract a man” mode. Given that I was already having signs of mild arthritis, tanning was about the dumbest thing I could have done (UV rays are HORRIBLE for lupus) but I’ll cut myself a break since I had no idea what I was risking beyond skin cancer (which admittedly was already pretty dumb of me. But I was 21 and heartbroken, so again, cutting myself a break).
I noticed after nights of clubbing in heels that I would have a hard time walking the next day. I would get up out of my chair and my ankle or knee would lock in pain out of nowhere. Sometimes it happened so suddenly that I would nearly collapse onto the floor. I didn’t think much of it, except that maybe I should quit wearing heels. It honestly never occurred to me that something could be seriously wrong with me.
I graduated college in June 2004 and met my future husband on the day I graduated. I also started working full-time at the fundraising firm for which I did my internship. The hours were long, the environment was stressful, the pay was for shit. They didn’t offer health insurance when I first started and I didn’t realize that I was still covered by my parent’s insurance (it’s changed with Obamacare but at the time you were covered until the end of the calendar year of the year you graduated from college) – but as it turns out I was very lucky that I thought I didn’t have insurance because I never saw a doctor. I say I was lucky because my company started offering health insurance as of January 2005 but had I been seen by a doctor in the interim my new insurance probably would not have paid for my treatments since they could have classified it as a pre-existing condition.
As 2004 passed, my symptoms began to ramp up. When I woke up in the morning, I never knew what joint would be aching or swelling. I remember being home for the holidays (I think it was Thanksgiving again) and my knees swelled up out of nowhere. My family wanted me to see a doctor but I was convinced I didn’t have health insurance and so I didn’t. I honestly wasn’t all that concerned, I still didn’t believe there was anything seriously wrong.
My parents bought me a new Sleep Number mattress for Christmas that year (I thought maybe it was my crappy futon causing all my morning aches and pains) and I didn’t have a frame for it so I put it directly on the ground and I remember somedays it was such a struggle to get up out of bed because various joints hurt so badly I couldn’t push myself up. I was like an arthritic grandma at the age of 22.
And then finally, on a Thursday night in early January 2005, a mere handful of days after my new health insurance kicked in, I woke up in the middle of the night with searing pain shooting across my upper back and both shoulders. That was the first time I had ever had pain there and it was completely unbearable. I couldn’t move without pain, I had to use the bathroom but I just literally could not move. I started crying and Paul woke up. I told him I couldn’t move, that my whole body felt like it was on fire and I finally admitted to myself that something was seriously wrong with me.
The next morning, Friday, I called in sick to work and Paul and I immediately set out looking for a doctor for me to see. I called my cousin who was a family medicine resident at UCLA and told him what had happened. Since I had a PPO he advised that I go directly to see a rheumatologist. Paul looked up rheumatologists that took my insurance and decided that I should call someone named Dr. Bruce Miller. Why? Because he had a strong sounding name and an office in Beverly Hills. Yes, that is seriously how Paul picked the best doctor I have ever met.
So I called Dr. Miller’s office and his assistant Delia answered the call. She told me that unfortunately he was completely booked but I guess she heard the desperation in my voice and she said she would take my information down and see if the doctor would call me on his lunch break. I firmly believe she was one of the angels God sent down to help me when I needed it the most.
Dr. Miller? He was undoubtedly an angel in my life. In fact, if our little one is indeed a boy, his middle name will be Bruce.
He did in fact call me back during his lunch break that day. He spoke with me for awhile, listened to my story while he could have been having a nice sandwich. And then he said that he was completely booked for the day but he did think I needed to be seen right away. He asked if I could come at the end of the day, his nurse could draw my blood and take a urine sample before she left and he would see me after his last appointment. Keep in mind this was all taking place on a Friday, when most doctors want nothing more than to get home and enjoy their weekend.
Months later as I sat in his waiting room (he was almost always running behind but I never minded because I knew it was because he never rushed an appointment and wanted to give each patient personalized and thorough care) another patient began to chat with me. I always got a lot of stares in the waiting room because I was usually the youngest one there by a good 40-50 years. People wondered what I was doing there. The woman asked how I had found Dr. Miller (clearly prying but I didn’t mind, she was very nice) and I told her that I had just called out of the blue one day. She was shocked. She told me that there was a four-month waiting list for new patients, that she had been trying to get a friend in to see him for awhile without success. She told me that he was considered one of the best in LA and that she knew of quite a few other doctors who came to him for their own care.
It was my own Footprints in the Sand moment, realizing that the only thing that made any sense was that God had led me step by step to this very doctor, the one who would diagnose my lupus within two weeks of my first visit with him. A disease that often takes years to diagnose. I guess I was “lucky” in the sense that a) I presented quite clearly with lupus nephritis (arthritis, protein/blood in urine, positive dsDNA, low C3 and C4, anemia, etc.) and b) I had an incredibly thorough doctor who knew exactly what to look for and which tests to run.
I’ll never forget the day he called me to come into his office after he’d gotten all my tests back. I couldn’t even drive myself at that point and Paul was in class over an hour away so I had to ask a friend to take me the office. I was terrified, I couldn’t deny it anymore, something was really wrong with me but I had no idea what he was going to say it was. I was sitting on the exam table and he told me he was pretty sure I had lupus.
I remember him telling me that I wasn’t going to die, that the treatments had improved a lot and that death was quite rare nowadays. I know he thought he was being comforting but the fact was I had no clue what lupus was and it never even crossed my mind that I could die from it until he said I wasn’t going to die from it. He told me I needed to see a nephrologist because it was attacking my kidneys, and I realized that’s why his nurse kept asking me if I had a UTI everytime I gave urine – because there was blood in my samples. He was incredibly compassionate and gentle, and other than the death comment quite comforting about the fact that I was going to be okay.
Still, I left the appointment in shock.
I called Paul and told him what the doctor had said. He had class the next day but an hour later he was knocking on my door. He had gotten in the car immediately and stayed on the phone with me without telling me he was coming because he knew I would tell him not to. I already knew I wanted to marry him before that, but after that I was a little more sure.
I don’t remember at what point the shock broke and the tears started, but it happened sometime that night. I don’t remember telling my parents. I don’t really remember much else about that night besides what I just wrote.
And….now it’s late so I think I’m going to have to finish this another time. Up next…meeting the nephrologist and my kidney biopsy.
Category: The wolf /
one of these is not like the others
I’ve written about this before but I suppose it bears repeating given the nature of this post. I am not, by definition, “infertile.” But I think I get that world, at least much more so than I get the “fertile” preggo world.
I get what it feels like to know that comforting statistics aren’t actually comforting at all if you happen to find yourself on the wrong side of them. I get the pain of watching people pass you by and then lap you as you pray for it to be your turn. I get mourning “normal” even once you do finally have the dream of being pregnant come true.
I don’t know if resentful is the right word, it probably isn’t. Maybe jealousy would be more apt. Whatever, I still feel something every time I hear another pregnancy announcement or talk to another pregnant lady and hear all about her blissfully “normal” experience. No thoughts wasted on preemie survival rates or making sure there is a Level 3 NICU (in-network) at a vacation destination “just in case” (tip: Oahu has the only Level 3 NICU in the Pacific Islands). No looking up the preeclampsia forum. No fucking clue what MFM stands for.
Sigh.
I feel like the Bad News Bears every time I try to add to any conversation because I am always telling other preggos things they clearly don’t want (and likely won’t need) to know about.
No, we won’t be buying baby things until we reach viability. What’s viability?
(Actually this is not entirely true, there was a coupon code for a few free items that only lasted a week so I ordered them and when they came I put them in a box in our storage closet).
Why, yes, we’ve had six ultrasounds and will be having a fetal ECG done every two weeks starting at 18 weeks due to a potential heart defect. What’s an ECG?
Well my due date is February 15 but it’s unlikely my doctors will let me go past 39 weeks since they’re worried about preeclampsia. Pre-eh what?
You get the picture.
I feel like the orange amongst a sea of apples.
At the moment, amongst real life friends, there are eight babies (including ours) expected between December 2012 and March 2013.
My first thought upon reflecting on this was thank GOD I am pregnant or you all would be in for a seriously epic pity party (a la February). My second thought is one that I’m pretty sure puts me squarely in the “only an infertile” camp, it was that, if I lose this baby I will have seven reminders of what should of been.
Horrible, I know. Dark, I know. Incredibly self-centered. I. Know.
It wasn’t a thought I wanted to have, believe me, I wish my mind didn’t turn to such things. But how can it not when since before I even got pregnant I have been warned over and over and over again how my doctors will be “walking on eggshells” and have their “fingers crossed” the whole time I’m pregnant. How can that fear and anxiety, and let’s be honest, reality not permeate my thoughts?
I was talking to EJ (have I ever mentioned how thankful I am that we reconnected before we both started going through all this shit?) about this yesterday and how hard it is to get more and more attached to your baby as each day passes, while becoming more and more terrified at the idea of losing them. Once past the first trimester other preggos are onto planning the nursery and buying baby clothes while we count the days, hours and minutes to viability because for us that is when we will finally be able to breathe.
Nobody else gets it. Not that I expect them to.
But I still feel like an outsider looking in.
Please don’t misunderstand me and the point of this post. I am so grateful for this little one growing inside me. This is a dream come true and it truly is everything I’d hoped for and more. I know how lucky I am to even be having this experience and I know that even just twenty or thirty years ago it would not have been possible. I feel so blessed every single day I get to be this baby’s mommy and carry him (or maybe her) inside of me. I am constantly amazed at the fierceness with which I can love someone who’s face I don’t even recognize, but I’m unquestionably in love.
But the depth of that love is also what scares me. I’m not in the “safe zone” and so I am so scared to lose this precious little one. I know I have to trust God, and I do, after all He is the one who entrusted me with this miracle in the first place. But that doesn’t make this any less scary.
I am sixteen weeks today. Exactly eight weeks from viability. Twelve weeks til this kiddo has a 80% chance of surviving outside my womb. Eighteen weeks til my first goal (34 weeks). Twenty-one weeks til viability (my loftier goal).
Please body, I’m begging you, don’t fail us.
Category: Baby talk, Navel gazing /
Growing pains
So far this pregnancy has been about as ideal as you could ask for (and as always *knock on wood*!!). When I first got pregnant we wrote off the possibility of a baby-moon almost immediately, figuring it was simply not worth the risk.
But as things have progressed, my blood pressure remaining stable at approx 110/70 (better than before pregnancy) and the protein in my urine at neg to 1+ or thereabouts (better or the same as before pregnancy). I have started having a tiny bit of joint pain here and there but nothing that is concerning me or my doctors when compared to my pre-pregnancy pain which was actually a lot more frequent and higher on the pain scale.
Things have been so good that I started longing a little bit for just one last trip as a couple and then even more so when Paul pointed out just how cheap tickets to Hawaii are right now! Like the cheapest we’ve ever seen. So we started doing a bit more research into the possibility of a trip…we both had taken off the week before Veteran’s Day so we knew that was when I was likely to go. That meant traveling during week 25-26. I looked into trip insurance and found one that insures just plane tickets and allowed for pre-existing conditions as well as “Complications of Pregnancy” (Travel Insured if you’re curious) as long as you purchase the insurance within 14 days of paying for the tickets. I called them and confirmed that if I had any blood pressure issues or anything like that where a doctor felt it was not safe for me to travel (related either to pregnancy or lupus) that this would be covered and they said it would be.
I also looked up risk factors for flying while pregnant and it seems there are three main concerns: 1) severe anemia – I am slightly anemic but far from severe, if I become more so this would be a reason to cancel and would be covered by the trip insurance, I plan to have my blood checked the week that we leave for our trip, 2) sickle-cell – nope, not a concern for me at all and 3) clotting disorder – there is actually no evidence that pregnant women are at increased risk of blood clots while flying so this is more of a universal flying concern, the recommendations is just to make sure to get up frequently to stretch the legs and to wear compression panty hose. I was a little bit concerned since I know women with lupus can have antibodies that make clotting more common but I double checked my last set of labs which measured for those antibodies (done in October 2011) and I was negative for all of them. I was also negative when I had them done in 2009 and way back in 2005. I will ask my doctors if there is any reason to think we should do them again before November but I’m fairly certain the answer will be no since even though it can change over time, I don’t think it is known to change that quickly.
If I am having “very high blood pressure” before I leave that would be a problem, but again *knock on wood* so far my numbers look great. I will pack a cuff with me if I go.
And of course, I checked with not one but two MFM’s. When I first called the office to ask my MFM he was on vacation so his partner gave me the go ahead. I saw my MFM last Thursday and made sure to discuss it with him as well and he said that he was very comfortable with it as long as I wasn’t doing anything too strenuous (guess I’ll just have to save bungee jumping for another trip haha) and with the caveat that my labs and blood pressure needed to look as pretty as they do right now.
I will talk to my regular OB about this as well at our next visit but I’m pretty sure that if my MFM is okay with it, he will be too. Still, it doesn’t hurt to run it by one more medical professional, so I will.
My point in writing all of this is to make it clear that this isn’t some decision Paul and I entered into lightly, we have done our research and given it a lot of thought and have decided that this is something we would like to do. I can’t explain it fully, but even on an emotional/mental level it feels important to me to do this, it feels like something a normal pregnant woman would do and as happy as this pregnancy has made me feel, a part of me has still grieved the “normal” pregnancy experience that lupus has robbed me of. Since my doctors don’t seem to think there is any added risks of me going, I don’t see a good reason NOT to go.
Of course, my parents have their own thoughts about this. I told my mom on Friday and she was, as expected, not happy about our idea. At all. She lectured me for awhile about how I was being irresponsible and there was no reason for me to need to go to Hawaii now while being pregnant. She did not care at all about the fact that we had put thought into this or that my doctors were fine with it, even encouraging of it (“Doctors are not God!” was her response). She had to go so we didn’t get to talk for very long about it and I was really hoping that she would accept that this was something we wanted to do and grumble about it periodically but without escalating it any further than that.
Alas, this was not to be. Last night I received a phone call that was calm for about two seconds and then in an instant I was being screamed at like a five year old. It was literally like 0 to 60 in nothing flat. I’m pretty sure she had been stewing about it for the past two days and that’s why it was like, “Hello” and then instant screaming, but it felt pretty unfair since I hadn’t been a part of the argument she was having in her head. I was basically called a bad mother for wanting to go, I was guilt tripped about never listening to her, my vacation preferences were ridiculed (“All you do is eat”), all of this in a very shrill, very loud, “I’m the parent and you will follow my orders” tone. Granted my mom is Taiwanese and so can get loud very quickly without meaning to, but I (very proud of myself) managed not to raise my voice, to wait for her to finish her thoughts and asked her very politely not to yell a few times. It didn’t really work and that’s when it devolved into the guilt trip about me never listening to her.
At one point I told her that I would agree to take her concerns and advice under consideration and seriously consider canceling the trip IF she would agree to on her end, do the research about the risks of flying while pregnant. To this she responded she did not need to do research because it was “common sense.” Hm…apparently not common sense to the medical community nor most of the rest of the world, considering how many baby-moons I’ve read about people taking. Women who have had IVF’s or IUI’s or otherwise struggled incredibly hard, for years and thrown small fortunes into getting pregnant. In other words, the last women in the world who would jeopardize their hard won pregnancies for a dangerous vacation.
Oh yes, at one point she started talking about 9/11 and how those people didn’t realize how risky their flight was. Yes, she actually went there.
I don’t mean to make my mom sound like a crazy person. She, like all asian parents, tends to get some weird ideas in their head that they cling to even in light of factual evidence that proves otherwise, but for the most part she is pretty mellow and has always believed in talking things through. She does however, have an incredibly strong tendency towards confirmation bias. She has pretty much been against EVERY. SINGLE. TRIP I’ve taken since I was diagnosed eight years ago and has advised against me going on pretty much every last one (there has been one big trip to Asia, one trip to Miami/Caribbean, two Hawaii trips, and at least half a dozen Vegas trips) but she claims that she has only twice said I shouldn’t go and that after both of those trips I had a mini-flare (one Vegas trip and one ski trip at Mammoth). I can’t argue with her that this isn’t the case, because she adamantly believes it is. So in her mind, when she has a bad feeling about me going on a trip it must be because something bad will come out of it. Except, she just forgets all the times she tells me not to go and nothing bad happens. Thus she is 100% accurate about which trips I shouldn’t go on and since she thinks I shouldn’t go on this one I shouldn’t.
Sigh.
Needless to say it was very difficult to sleep last night. First of all, it’s not like I’m completely without anxiety about a five hour flight away from my team of doctors. But I’m convinced that as long as things stay as they are, flying itself is not the risk. From everything I’ve read, the main concern doctors have about pregnant women going on trips is not the flying, but simply the not being near their care.
Immediately after that disturbing phone call, I started researching Level 3 NICU’s and hospitals in Oahu and found that Honolulu actually has the only Level 3 NICU in the Pacific Islands. It is located in a Women and Children’s hospital that has excellent reviews and I confirmed that it is considered in-network as far as my insurance is concerned. I will be bringing copies of my most recent labs as well as contact info for my entire medical team. I am also planning to call them before the trip to see if there is anything they would want me to bring if I did have to end up visiting them (which I really hope I don’t).
I’m feeling much better after finding this information, so in that sense my mom’s freakout had some positive outcomes. But I’m still really upset and disturbed by how completely unwilling she was to be reasonable, even as a tactic to try and convince me not to go. It was upsetting to be treated like a reckless teenager, determined to have a good time no matter what the costs. It’s like she didn’t hear at all about the research I’ve done and the contingency plan we’ve made (the trip insurance) and the fact that my doctors will have the final say on whether or not this trip is a go.
It was as though I was five years old and being told that I have to do something because my mom “says so” without any further explanation. I appreciate my parents concern but I am a thirty year old woman and about to be a mother myself. I think I’m old enough to make rational decisions and if my parents want to give me their input I would appreciate it if it was based on arguments beyond “it’s just common sense!” when it’s obviously not (see: medical opinions and millions of other women who have flown pregnant and been told it’s fine by their doctors).
I was telling one of my friends about this and she said the same type of thing happened to her shortly into her first pregnancy and that you just have to draw a line in the sand and remind them that they will always be your parents and you always appreciate their input but that YOU are the mama now and you and your husband get to make the final decision for baby, not them. It reminded me about EJ’s post about a similar situation with her mom (although theirs sounded more like a grown up conversation!). I guess this is just all part of growing up.
Who knew that being both a mom and a daughter could be this stressful.
Category: Baby talk, Navel gazing /