Real Life: Stranger Than Fiction

I got “House“-ed. Completely, utterly… and I didn’t realize it had happened until my husband said it while driving me home from the hospital yesterday.

In previous posts I’ve mentioned my ongoing struggle with my health. In this one, I even specifically call out the show House, M.D. for being unrealistic. [The TV show is unrealistic? My god someone alert the media, right?] The basic formula is that someone shows up in the ER at death’s door, the team of doctor characters take cracks at what it is, then House swoops in and figures it out in the last ten minutes or so. Pretty basic, but it makes the titular character look like a effortless genius that can diagnose people with a simple exam.

So, as you all know I am going to be having a baby soon, [and if you didn’t, then surprise!] and that it hasn’t been the easiest pregnancy. You also know through this post that I have an autoimmune disease called HS.

These things are all relevant–I promise.

This is fairly non-sequitur though.

This however,  is clearly non-sequitur.

After I had my daughter four years ago, I developed what is known as “postpartum pre-eclampsia”. I had all the symptoms of pre-e before giving birth except for one. And without that one symptom [protein in urine] my OB wouldn’t hand down an official diagnosis. After I had my lovely little daughter, my body went nuts and I almost died. Very literally. If I hadn’t dragged my butt back to the ER three days after being discharged, I would have had a stroke and died that night.

In the years following that incident, I had problems with migraines, my overall health, and I was finally diagnosed with HS. I went on medicine to help with the HS and ended up accidentally pregnant. [And by accidentally I mean that I was diagnosed with infertility and after we tried to have a second kid for three years, thought my daughter would be the only one we’d ever have; despite me wanting at least one more. Until you inadvertently fix it, infertility is pretty amazing birth control.]

Since I had the history of pre-e, and I had recently developed a spike in blood pressure along with headaches, spots in my vision, and trouble breathing, my new OB decided to send me over to labor and delivery for observation. We headed over, thinking it would be a short trip; everything would get dismissed as being fine, then we’d go shopping like we had planned.

I ended up admitted, then rapidly transferred to a hospital with a level III NICU. My blood pressure was so high, they thought they might have to get the baby out of me that night. I’m twenty-four weeks… barely viable. I freaked out. My husband freaked out. My family freaked out. Contingency plans were rapidly made, all to adjust to possibly spending four months with a preemie in intensive care. The next twenty-four hours were filled with panic.

The baby looked great and was doing well despite me feeling like garbage, but something weird happened the next evening. They discovered that my blood pressure dropped a bit if I stayed on my left side all day long. If it was true pre-e, that wouldn’t have any effect. Later that night my high-risk OB decided to call in a [to me] strangely familiar-looking neurologist. Apparently there was a new theory–that I had some kind of pregnancy hormone-fueled tumor that might be causing symptoms that mimicked pre-e.

Cue more panic.

A brief scan put that theory to rest, but he decided to examine me further. He put his hands on a spot on my neck and I nearly flew up out of the bed from the pain. He told me my optic nerves were extremely swollen and that would cause the headache and spots. Then he sat down and asked me a bunch of questions about my medical history. I almost left out the HS because he would have been the fourth person I had to explain it to that day, but decided to go ahead anyway since it is a major, ongoing health issue for me. I needn’t have worried though–he knew what HS was already! I was shocked.

He had the nurse take a few vials of my blood, bring me ice packs, and give me a combination of meds to help bring the swelling down in my optic nerves. The medicine they gave me did help enough that I could finally get some sleep, but oh man the side effects were horrible. I started sweating profusely, the room became unbearably hot, I was jittery, and I felt like I was going to throw up. I fell into a fitful, drugged slumber sometime around one or two in the morning.

Shortly after five AM the neurologist came back, and in my half-asleep haze I realized why he seemed so familiar. He looked and sounded like Dr. Spaceman from 30Rock, just with fifteen years added! If I had been in any kind of frame of mind for joking, I might have told him as much, but I left it alone since he looked so serious. He started by telling me very specific things about my health that I hadn’t told him about: high anxiety that gets worse every year, the weird feeling in my tongue, being tired even after getting lots of sleep. Brain fog, my hair loss, digestive issues–he even knew about the muscle weakness I’ve been experiencing since I left my teens.

I’ve said before that autoimmune diseases often travel in groups, and I’ve always suspected that I would end up with another one sometime down the line. [I always figured it would be Lupus, for some reason. A lot of my symptoms fit.] But I wasn’t prepared for what the neurologist told me.

Pernicious Anemia.

Due to my jerk-ass, overactive immune system destroying a vital protein made by my gut, I cannot absorb vitamin B12 from food, or even from most vitamin supplements. I’ll never be able to. He said my levels of B12 were so critically low that he was both A.) shocked that I was pregnant at all; and B.) surprised I was lucid. Apparently when B12 levels get as low as mine, you get dementia and it is often mistaken for early-onset Alzheimer’s disease. He then proceeded to tell me that to have levels this low at my age, I have probably been affected by it since early childhood and that made it an autoimmune condition, in my case.

I was floored. So many of my health problems that couldn’t be linked to HS suddenly made sense the more we talked–my dark circles; thin, brittle hair and nails. The random muscle aches and numbness. Never feeling refreshed after sleep. Hurting myself in PE all the time. My clumsiness. Why my vision was fine until I turned thirty, then suddenly one day I couldn’t read words at a distance. How difficult it was to put my thoughts into words–it was all due to this. He then told me that since you can’t function without B12, if they hadn’t caught it now the pain would increase, I would have lost my mind over the next ten years, and died in my mid-forties.

I’ve had so many blood draws done over the years–even as a child. How was something so critical missed?! I asked, and it turns out that testing for B12 is something that has to be specifically requested, and my symptoms along with an already diagnosed autoimmune disease prompted him to test for it.

I had my first shot of artificial B12 a few hours after that. By that evening my blood pressure had dropped to normal levels, the spots in my vision had decreased, and I felt amazing–like I could bounce off the walls! My optic nerves are still swollen, but the neurologist said that he suspects they are damaged from a lifetime of insufficient B12. We won’t know the extent of the damage until my levels have been up for a while, and my body has a chance to repair what it can. I’ll need to have several shots at first to start healing, then I can start doing them every few weeks before trying an oral version made to be absorbed by people with this condition.

I’ll be on this treatment for the rest of my life, and it can still cause issues down the road if I don’t get my levels checked regularly. It’s hereditary, so now I need to have my own children tested; but on the bright side my oldest is only four so early intervention will save them from experiencing the issues I’ve faced, thankfully. In fact, my mother and brother are also getting tested because they share a lot of the same symptoms that I’ve had. My brother goes through several boxes of energy drinks a week–ones that specifically advertise having B12 in them. I was almost addicted to the same drink at one point; I felt noticeably better after drinking it, and not because of the caffeine. I would have one a day, and I only stopped drinking it when I was pregnant. I had been self-medicating, and he might be too.

So for the time being, I am still pregnant. Thankfully baby can stay in until he’s nice and ready to come out on his own because I am now getting the treatment that I have desperately needed my whole life. It’s insane to think that if not for this one incident–and one perceptive doctor–my future could have been very different. The whole situation feels like a cheap twist in a slice-of-life tale; forced, eleventh-hour tension added to an already over-dramatic arc.

…stranger than fiction, indeed.

Leave a Reply

Please log in using one of these methods to post your comment:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

%d bloggers like this: