TagHS

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.

Hidradenitis Suppurativa

Imagine that you’re going about your life one day, and you notice that you have been scratching at the same dime-sized spot of skin for the past few hours now–let’s say it’s on your underarm. Or maybe it’s tender, so you keep rubbing it. Either way you notice it, but in passing annoyance.

You continue about your day.

Later you start to feel a bit run down. “Am I coming down with something?” you wonder. You feel rather achy, and that spot on your underarm—whether it be itchy, tender, or both—is starting to firm up beneath the skin. Maybe you were bit by a spider while you slept last night.

Your day continues. As you go about your business you notice your underarm becoming more sensitive by the hour. As you move your arm you feel a burning pain radiating from the spot. The itching intensifies. What on earth bit you? You may duck into a bathroom to check it out. The skin is red, tense, and raised. There may even be a bit of a bump on the surface. You touch it and discover that beneath the skin, there is a firm lump the size of a quail egg. The pain is an excruciating, stabbing burn that radiates down your arm.

You finish your day and are getting ready for bed. You may be turning in a bit early due to fatigue or you may have toughed it out until your regular bedtime. You take some over the counter pain meds, and climb into bed gingerly, trying to not disturb the boil—which is quite swollen by now and may be anywhere from red to purple in color. Your underarm aches, and you drift off into a fitful slumber.

A day or two passes. The boil has swelled into a monster—half-above and half-beneath your skin—somewhere between golf ball and baseball-sized. You make an appointment with your doctor, who looks at it, only sees what is on the surface, then tells you to take some acetaminophen and to clean better when you shower [and to take more showers]. If you’re overweight, they also tell you to lose weight. You go home. You feel like you’re going to come down with a cold any minute—achy, sweaty, tired, cranky. The boil throbs even when you’re not moving your arm, and makes doing anything difficult.

That night you go to sleep, and wake up a few hours later. You notice that your arm isn’t as tender, but there is an awful smell, and that the underarm area of your T-shirt is damp. You turn on the light in the bathroom to find that the boil is now oozing a milky, bloody mixture that smells absolutely terrible! You try squeezing it but not much more comes out, despite how much there is on your shirt. You put a topical ointment on it, a bandage, change your shirt [and maybe bedding] and head back to bed.

The next morning your underarm throbs. Every movement of your arm causes a radiating, burning pain. It feels raw and bruised despite it opening up. And it’s still oozing that fluid.

This continues. It might continue for a few days, or it might continue indefinitely. Over time, more of the boils appear. If they heal, they leave behind horrible white or purple scars. If they don’t heal, they will constantly bleed, and/or ooze a clear to milky fluid that smells like something died. New boils will appear inside of the scars, and old, healed lesions will open up again. Multiple boils will form close together and create a tract of tight, inflamed skin over a large area. You see your doctor over and over again with the same results—they tell you to clean yourself better and/or to lose weight. Sometimes you receive antibiotics if it looks like you may also have an infection, but that is rare.

Over time you become self-conscious. You change your routine, trying to not irritate the affected area. You stay home on days where the smell from the open sores are too bad, or when the pain from moving is too great. Over the counter pain medicine does nothing to alleviate the deep-seated throbbing, stabbing, and/or burning pain that comes from these boils. Any kind of pressure is agony, and they tend to form in the worst possible places. You’ll distance your friends. You may lose your job. You constantly feel rundown and achy. Your sleep suffers. You gain weight from inactivity. Each day becomes a chore to complete.

This continues for years, unchecked. You cycle through periods of flare ups and remissions where it’s not so bad, but as time goes on, the “good days” become few and far-between. You begin having “not-as-bad-as-normal days” instead. The aching, pain, and tenderness is constant. You may begin to get boils in other areas as well.

Some day you might get lucky. You may find yourself in the emergency room, at the end of your rope due to a massive softball-sized boil, and luck into a doctor who not only wants to lance it so you can get some relief, but knows that you have a legitimate disease—and that it has nothing to do with poor hygiene like your doctor has been saying. Others won’t be so lucky, and might go through life thinking that they are prone to getting boils, that they somehow aren’t washing properly, or that it has to do with weight. But if you do get a diagnosis, just knowing these things can be so freeing!

This disease is called Hidradenitis Suppurativa, often abbreviated simply as HS. It is a rare, extremely painful, debilitating autoimmune disease with everyday pain rated between 4-10 out of 10, and an average DLQI rating of 10-18; that’s more painful and debilitating than most well-known chronic, disabling medical conditions, and on par with the pain experienced by cancer patients. 1-4% of the world’s population is affected by it, and those are only the people who have overcome the shame and embarrassment of the condition to get a diagnosis. In fact, it is an invisible illness; the people affected by it hide it for as long as possible, and it’s usually in areas covered by clothing. It is also shown to be hereditary and often runs in families. There is no cure. It can be semi-managed, but that is all.

In the UK this is HS Awareness week, and those of us affected by this disease in the US are adopting this week to promote HS awareness as well.

Until this point, I have only told family about having HS. I have it in an embarrassing area that is difficult to manage, and it hinders my ability to walk, stand, and sometimes even sit on a regular basis. It makes it so that I can only leave my house once a week due to the mess and pain. I’ve had to change a lot about my life due to it. After my car accident it was easier to blame my HS flares on my back, and I still do to people who don’t know. I can’t wear certain types of clothing, going to the bathroom is a struggle at best, and I can’t be as active as I would like to be. The consequences are far too great. It has become especially bad since having my daughter. I was officially diagnosed about two years ago, and my current flare up has been three years long. Three years with no relief! This is part of the reason I decided to begin writing in the first place—it’s something that I can do from home, and it distracts me from my pain.

I suffered for fifteen years before I was diagnosed. I had been running a high fever and unable to keep down food or water for twenty-four hours, so my husband made me go to the ER. They couldn’t figure out why my white blood count was so high, but I wasn’t going to mention the oozing, open wounds I had because I was too ashamed. My husband finally suggested it might be from the sores and the ER doctor insisted on having a look. It turned out that one of my boils had become infected. The ER doctor sat me down and walked me through the HS diagnosis, and recommended I go see a dermatologist, as they are the specialists who are trained to handle HS. She also told me that Hidradenitis is NOT contagious. You cannot catch it from anyone. It is not due to poor hygiene. It is not due to being overweight—though sometimes that can exacerbate it. It is not due to anything within an affected person’s control.

Hidradenitis is a vile disease, and I’ve never made pains to hide it from my husband because he’s seen me naked pretty much since the onset of my HS. He has been by my side as it has become progressively worse, and he has seen how debilitating it has become. I am extremely fortunate that he handles the disgusting nature of this well. I am in several support groups for people with HS, and many in them have lost partners due to them not being able to deal with the symptoms of this disease.

I saw the dermatologist again last week, and we discovered that I am now at stage three. In the past when I was stage two, I had been recommended to have surgery to remove most of the skin on the lower half of my torso and replace the skin with a skin graft from my thighs and hips. I didn’t have the support to be able to have a surgery like that, as it will require weeks of recovery and I have a young child at home that needs constant supervision. I still don’t have that kind of support, so surgery is off the table.

A recent discovery has been that the drug Humira helps some people suffering from HS, so after talking with my dermatologist we are going to try that. This has come about due to increased awareness about HS, so I am working through my shame and writing this in the hopes that someone who has it might read it, and get the help they need. [Or that someone who knows a person with these symptoms might encourage them to look into HS further and talk to their doctor about it.]

It is embarrassing, but those of us suffering through this need to put aside our humiliation and speak out in the hopes that maybe some day, there will be a cure, and we can regain some semblance of having normal lives.

If you want to support awareness, please share this post or visit http://www.hs-foundation.org and make a contribution. Also, if you shop at Amazon, [like where my books are sold!] why not go through Amazon Smile and set your charity as Hidradenitis Suppurativa Foundation Inc? When you use Smile, Amazon donates 5% of your purchase price to the charity of your choice! It’s easy and painless–unlike HS.

To find out more about Hidradenitis Suppurativa, please visit No BS About HS.