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.

140 BPM: A Sob Story

It’s tough to write when you’re sick.

It’s not the constant pain, or crushing exhaustion–which are limiting on their own and make me want to do nothing but lie in bed–but the horrible muddled brain that comes along with it. The sitting, and staring, not comprehending the words of your outline, and being unable to do anything except look at that blinking cursor; wishing you could think of anything except how rundown you feel. In fact, this post is an effort to shake the cobwebs from my brain, and I still feel like I’m doing it poorly.

Instead I’m binge watching Fuller House because it’s the only thing my daughter will allow on the TV that isn’t cat videos on YouTube. [She calls it the “Babysitter Show”] And despite the fact that the show is aimed at me, a person who grew up watching Full House, I kind of hate myself for liking it the little bit that I do. [But at least it’s not the same cat videos over, and over, and over again.]

Definitely not cat videos

It’s also difficult to write through depression, which I’ve struggled with off and on for a good portion of my life. Fortunately it wasn’t so bad that I needed medication, but it’s tough to avoid when you have a chronic illness. [It pretty much comes with the territory when you’re in near-constant pain.] And not only that, but I have several injuries from accidents before this happened, so basically I’m a mess of a human being. The worst part though, is that it hasn’t stopped. I’ve lost weight this past year. A lot of weight. I originally thought it was from stress–losing our house and having to be separated from my husband for two and a half months was pretty stressful. Add in not eating much and deciding to quit soda, and you can see where I thought the weight I lost was just from those things. It didn’t seem like a problem until my husband and I were able to be together again, after we got into our new place. I fell back into old habits: Soda. Fast food. Chocolate. But I still kept losing weight. In denial that anything was wrong–and partially in defiance of it–I started eating like an idiot.

My spirit animal

I’m supposed to eat a ridiculous amount of salt because of my stupidly low blood pressure. [So low that I pass out if I’m not eating enough salt.] I’ve also discovered that sometimes I need to eat red meat to feel better, on top of the salt intake. So this turned into an excuse to eat out–a lot. Burgers, Steaks, Fries… I have low cholesterol too, so I thought a little indulgence here and there couldn’t hurt. Until it turned into three times a week, and still my pants began to fall off of me. Being overweight most of my life, I didn’t want to complain–after all, who would believe that unintended weight loss was bad? The people I did tell congratulated me or said things like, “Oh, you look so good!” Any doctors I had seen for my back pain [from a car accident several years ago] listed weight loss as something that would help me. Unfortunately, the symptoms of my [yet undiagnosed] autoimmune disease were getting worse as the pounds melted away, which I wasn’t surprised at. While I was pregnant with [and after I had] my daughter, I lost quite a bit of weight. My symptoms flared up and I gained weight on purpose to get back to my “normal”. Despite sounding like a crazy idea, it worked.

The weird thing is that I wasn’t officially diagnosed with anything yet, I just knew I felt better when I was heavier. It wasn’t until a year and a half ago that I was finally diagnosed with an autoimmune disease. [And it’s vile. I’m not going to even name it, because in addition to being painful, I’m that embarrassed by its symptoms. Sorry.]

But that was a bit of a digression. Some time after the holidays I started feeling really run down, realized I was being an idiot, and began eating better. Cut the fast food back to once a week [sometimes two–not gonna lie] and cut the soda back to only when eating out. I broke a tooth on Superbowl Sunday, and was given antibiotics so it wouldn’t get infected before we could extract it. A week later, I ended up with a horrific rash all over my body. Went to the ER, where they thought it was chicken pox. I assured them it wasn’t, as I’ve had both it and shingles before. Twice. I also found out that in the past ten months, I’ve lost over forty pounds. Without trying. Despite cramming myself full of junk.

They finally did a blood draw and determined it was an allergic reaction to the antibiotic. Pulled me off that and put me on Prednisone. No qualms from me there–I love Prednisone. I hope to have it prescribed to me the same way a Vicodin addict hopes for painkillers. It is the only way I get any relief from my chronic suffering. [Because it suppresses the immune system.] After three days on the Prednisone I felt absolutely amazing. My rash was gone, my bloat vanished [the bloat I hadn’t realized I had], and the symptoms of my chronic illness were in regression! I had the tooth yanked at the beginning of March, and tried to take a picture of my swollen face to send to my mom a few hours after the procedure. But I didn’t look swollen–at all. Yay for Prednisone!

A few days later I ran out of medicine and started to feel shitty again–headache, lightheaded, fatigued. Upped my salt intake, but to no avail. Now I noticed a new symptom: my heart felt like it was going to leap out of my chest. All the time. I started monitoring my heart rate with an app on my phone; 80-ish beats per minute at rest, over 100 with mild activity. Soon even walking across the room left me breathless. [and with a heart rate of 120-140 bpm.] One night a week or so ago I felt a crushing pressure in my chest, and my husband convinced me to go to the ER.

After they determined I wasn’t having a heart attack and didn’t have a blood clot, they recommended that I see a cardiologist and turned me loose. The problem with that is that since my husband switched jobs, I don’t have health insurance. I called around and was put on a waiting list at the only low-cost provider in town–a five month long waiting list.

Part of me wonders if I’ll be around in five months. Part of my husband wondered if I’d be around in five months also, and he told me that we were going to dig into our savings and have me see a specialist. I protested. We were saving for a new car–ours is on its last legs and should probably just be given a viking funeral. He insists.

He’s right. I’m used to putting things before myself: my daughter, my husband, my pets, the car–even housework. [I can’t tell you how many times I’ve thrown out my back vacuuming. I am a garbage person.] Now I’m starting to get nauseated after I eat, no matter what I consume. It’s pretty awful. I’m tempted to stop eating altogether. If you follow my Instagram, you know I love to cook, [and eat!] so this is terrible.

I’m at a loss. I have no idea what my body is doing any more.

So this coming up week, I’m going to see an Internist. I have no idea how much it’s going to cost. This scares the crap out of me. But at the same time, I’m more afraid of dying. Tachycardia [an increased heart rate] will just kill your ass over time. Within five years your chances of dying go up something like 75% statistically. I don’t want to spend five years feeling like this. I don’t want to die either. Period. End of story.

I’m worried it’s more complications from my autoimmune disease. I’m also worried it might be cancer. [My whole family has had it, and I found out I grew up in a secret nuclear fall out zone, so it’s not farfetched.] I’m worried it’s another autoimmune thing, because they travel in groups. I’m worried about a lot of things. I always have been. I’m just… not used to worrying about myself.

You’re probably thinking that’s how I’m going to end this; that if I had thought of myself sooner, I wouldn’t be so sick. Real life doesn’t work that way though.

The truth is that I would have spent a lot of money that we couldn’t afford to spend, on a lot of doctors, who would have dismissed my symptoms because I’m fat. It’s happened in the past, and I’m also worried it’s going to happen next week, despite telling them about all the weight I’ve lost. After I was diagnosed with my autoimmune disease, I told my primary doctor about it, and she laughed at me. Told me I couldn’t possibly have that because she’d never heard of it showing up where it affects me! She told me to lose weight to fix it. I was embarrassed and furious. Firstly, I knew that losing weight exacerbated it; secondly, it was common for it to appear where it affected me; and finally, this family practitioner was dismissing the diagnosis of someone who specialized in autoimmune diseases! In some ways, I’m not sorry we lost our insurance because I never have to see or pay her condescending face again.

There is no happy ending, or simple moral to this story. Just fear and uncertainty.

Real life sucks like that.


P.S: Normally I would have written something like this in about two hours, but it took me the entire day to finish it due to brain fog. Ugh. Wish me luck with my appointment next week! I’d love to start feeling better and get back to writing.