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Trolls, Molds and Woman Colds

Well that title is fairly self-explanatory I think. So see you next week.

Just yankin your chain.

This week can be somewhat appropriately represented by these three nouns.

First, Trolls. 

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You know what hugs are great for? Sharing germs. Way to go Poppy.

My oldest niece is currently going through a Trolls phase. At least twice a day she asks for “Everybody oh oh oh.” Since she is not quite two, I can understand why the bright, song-filled movie is appealing to her. In fact, the adults of the house have agreed that the movie was either designed by a think-tank of five-year-olds, or the people who made it were crazy high the whole time. Either way I think we are all excited for this phase to be over.

Second, Molds.

I’ve been getting allergy shots for my new-found mold allergy for over a month now. I do feel that they are already starting to help–I have been sinus-infection-free since July despite the very wet September we are having (molds love the rain). The only downside to the shots is that they tend to trigger migraines. In the long run this may be a good thing, as that suggests that mold is a big migraine trigger for me right now; once I get the allergy under control my migraines will likely improve. For right now though, it does make shot day a tad tricky.

Third, Woman Colds.

The Woman Cold is a term I have decided on to describe a phenomenon as real and as ancient as The Man Cold. The Woman Cold, like it’s masculine counterpart, can of course be experienced by either sex. Its name is simply an acknowledgement that the majority of its sufferers are women.

The Woman Cold refers to a cold/illness that the sufferer chooses to ignore and remain in

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Ron with his Woman Cold

denial about until something drastic happens. The owner of The Woman Cold will continue with life as normal, steadfastly insisting that “it’s not that bad” until they either recover or get much, much sicker.

This week I had a Woman Cold. There’s been a cold going around campus and I finally succumbed. Really, as far as the cold itself goes, it was nothing to write home about. The cold was not the primary problem though–the whole week my chest was getting tighter, I was coughing a little, then a lot, then A LOT.

Just part of the little, trifling cold I was sure. It will pass.

Eh. Wrong.

Friday morning I came back from my morning class. I set my backpack on the floor of my room. I bent over to retrieve my phone from its depths. Suddenly I was seized by an intense coughing fit that led me to discover this equation:

Intense coughing + bent over Miranda = throw up on my poor backpack.

Oops.

Now I really, really didn’t want to throw up on someone else’s backpack, so I finally accepted that it was time to stay home from class. My Woman Cold had sneakily metamorphosized into bronchitis.

Actually, as I have already mentioned, this development wasn’t sneaky at all, but as a fundamental part of The Woman Cold is denial, virtually every outcome except full recovery comes as a surprise to the sufferer.

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And don’t think for a second I’m saying that The Woman Cold is a good thing–if many of my professors and classmates hadn’t come down with this particular branch of the cold then I probably wouldn’t have gotten it. They were in denial, they came to class sick, they got other people sick and that ultimately led to me getting bronchitis. The Woman Cold is just as annoying and foolish as the man one. Well almost.

 

 

I Earned My Stripes with a New Zebra Record (Or Two)

Friday at , at long last, I got my Ig meds and was able to do an infusion. It had been exactly three weeks since my last infusion, beating out my previous record of time-without-an-infusion (since I’ve started infusions that is) by several days. It’s been a long three weeks.

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Had to celebrate the end of the nightmare with some Fro Yo!

Amazingly, I did not get seriously sick or get an infection this time. My previous record of two-and-a-half weeks without an infusion got me a horrible gi infection and a partially paralyzed stomach. So my family and I had good reason to be a bit worried this time, but even with classes starting and sickness already going around campus I managed to avoid any great catastrophe…

Friday night I actually set another record–the longest it has ever taken me to do a sub-q infusion. It was my first infusion of Gamunex-C (I had been on Gammagard, Aetna made me switch).

At the historic event Thursday of at last being able to set up my shipment, the nurse informed me that the rate tubing I’ve been using with Gammagard is off-label for Gamunex and so I have to use a different tubing and discard my old ones (I got to be honest this is very unlikely to happen). If you’re wondering what the difference between F900 rate tubing and 120 rate tubing is, it’s just a difference of about six inches and 2 hours. Normally I infuse (or did infuse) two 50ml syringes and each syringe takes about 30 minutes. Add in a short break in between syringes to discourage leaking and my entire infusion took 1.5 hours (not counting set up). Friday it took 1.5 hours PER SYRINGE. If you’re keeping up with my extremely complicated math, you’ll know that means it took 3 hours to infuse Friday!

Now I know what you’re thinking–shouldn’t I just be grateful to have anything to infuse? Well I am. I super duper am. But nonetheless I feel it necessary to be true to human nature and find SOMETHING to whine about, no matter how small.

How long it took is really my only complaint with the new med. Well that and I had the exact same side effects from Gamunex that I had when I infused Gammagard at twice the rate. Otherwise the only thing wrong with Gamunex-C is that it is a change–a change from a med I was very happy on and a routine I was accustomed to. But oh well. Life goes on.

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The new med!

What To Do When You Can’t Get Your Ig Meds

I apologize for not posting last week. The beginning of classes combined with Aetna drama has made for some significant insanity.

As of Friday I’ve gone two weeks without an infusion. This is not the first time that insurance problems have caused a gap in my Ig treatment. Actually it is the third time in 3.5 years of treatment, so if my experience is any indication, it’s hardly a rare occurrence. So what do you do when you run into insurance woes and experience a gap in treatment?

1) You freak out.
tumblr_neiak7IgW71svfqeco1_500If you don’t have PI you can’t fully understand how terrifying it is to go without Ig treatment, but let me try to help you: imagine that everyone is born with a car, but you were only born with half of one. Most of the time you have a supplemental second half that, though not as good as a regular car, allows your car to function. Now let’s say your car insurance hasn’t re-approved your supplemental second half, so it is taken away temporarily. Do you know what half a car is good for? Nothing. That’s what. It can’t drive. It can’t even keep out the rain. Right now I’m driving in half a car (so by “driving” I mean just sitting there hopelessly. But I get lost in the metaphor).

 

2) You prepare for battle.IMG_0002

Ok freaking out time is over. Now it’s time to get down to business. Until you receive your infusion you will be fighting a war of insurmountable odds on two fronts: on the Western Front you will need to pull out all the stops to defend against viral and bacterial invaders–AKA you’ll be trying not to get sick. So dig some trenches and fill them with hand sanitizer, germicide wipes and Vitamin C. On the Eastern Front you’ll be on the offensive, trying to infiltrate the insurance company and get access to your Ig meds before the germs overwhelm your defenses. As it is only a matter of time before your weakened immune system is smushed, your offensive efforts are especially important.IMG_0001

 

3) You harass your insurance company into submission.

This is your offensive plan: you call them everyday, multiple times a day. You ferry messages between your insurance adversaries and your doctor’s office, hoping you’ll be able to find a resolution. You write down the names of people you’ve spoken to so you don’t get lost in the vast sea of insurance employees playing hot-potato and phone-tag with you. Yes, your ears will bleed from the grating, static-filled hold-music you spend minutes and hours and days listening to. Yes, your brain will be battered by the ever-changing information you are told ping-ponging around in your head. Yes, you will burn with frustration and anger as hour after hour of effort turns fruitless. But when you sit once more in front of the TV with your Ig juice flowing through the needles in your legs or tummy it will all have been worth it.IMG_0003

 

4) You breathe and hold onto the knowledge that this is just a temporary setback.IMG_0005

Every time this happens to me each day without Ig coverage seems endless, the insurance maze seems unsolvable and the sickness that results from lack of treatment feels as if it will go on forever. But every time the lack of coverage comes to an end, the insurance puzzle is solved, treatment resumes and health eventually returns. That being said it is still perfectly acceptable to break some stuff, punch a wall and/or cower in an extremely sanitized corner holding a can of disinfectant spray–that my friends is an inescapable part of the process.IMG_0004

 

5) You eventually emerge bloodied but victorious.IMG_0006

Congratulations. By now you probably have caught a virus or developed an infection, but at last you get to resume treatment. Your insurance woes are behind you for at least another 6-12 months. Now you just have to deal with the all the stuff you normally do, plus the physical and psychological destruction caused by your war with the insurance company. Feel free to melt into a puddle of relief that the nightmare is, for now at least, over.

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Real

Here’s a poem I wrote a while ago. I’m no poet, that’s for sure, but I think the message is pretty clear despite my iambic inadequacy.

P.S. the line with “gall” is a gallbladder joke–I wrote this just before gb surgery 😉

Make of me what you will,

Administer another pill,

Promise this one to bring relief,

Another lie to cross your teeth.

 

Cut me open, take it all-

It’s yours to have with no gall.

I’m in pieces anyway,

Slowly crumbling day by day.

 

Put me under, let me sleep,

I’ve been under-in too deep

For an age or five or ten,

Encased in my fleshy pen.

 

Look at me, rambling on,

Screeching out my sorry song,

Bitterly biting in the ear,

A tale we try not to hear.

 

An illness real, with no romance,

Waste of time at a glance,

No one wants to really see-

No one wants reality.

 

Instead we look to Hollywood,

Make it shining, show us could!

Present it as always, everything,

Everything always glistening!

 

My song not so sweet to the taste?

Suck it up, give me a break!

Beauty is in everything,

But not as a gory romance teen.

 

Don’t twist life in a knot,

Making it something that it’s not.

Sorry are the eyes can’t bear to see,

Real pain, real beauty.

 

 

 

 

 

10 Things Not to Say to a Zebra

1) You Should Have More Faithms-h4t1vN

  • By telling me that you are exercising too much faith that I will not smack you in the face. Faith isn’t a fix-all substance. If having faith meant you never had any problems then there would be no need for you to have faith.

 

2) You Should Get More Exercise

  • You should exercise your brain more–out of the two of us, who do you think knows better what my body can handle and what is appropriate for it?

 

3) A Couple Germs Aren’t Gunna Kill You

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  • Probably they won’t, you’re right. But they have a very good chance of making me very sick. And if your “harmless” germs make me very sick then they might just end up killing you, albeit in a roundabout way.

 

4) So When Are You Going To Be Better?

  • Please visit a dictionary entry for the word “chronic.” You also might want to stop by the term “genetic” and perhaps try a google search for “how to have a filter.”

 

5) You Should Try *Insert Diet Here* I’ve Heard It Heals Every Health Problem Ever

  • No. Just. No. I can’t do this with you right now–ever.ms-oyjwvd

 

6) You Need To Gain Some Weightms-TfNOJd

  • Would if I could, next. But also, did you know that it’s possible to be insensitive about someone’s weight even if they’re not fat?

 

7) I Could Never Deal With That

  • I can often never deal with a paper or other school assignment…until the night before it’s due and then I have no choice, and somehow I always manage to face what I couldn’t the day before. Either I face it, or I fail. And I really can’t face failing.

 

8) You Should Just Try Getting Up Earlierms-bLCjjx

  • For someone who has chronic illness, getting more tired does not automatically equate to getting more/better sleep. It does often lead, however, to getting sick or having a flare.

 

9) You Should Come/Should’ve Come

  • I promise you that you are not fun enough to merit a migraine, a virus, an infection, etc. If I felt like I could go (and wanted to), I would.

 

10) You’re Too Young To… Feel Like That, Be That Sick, Be That Lame, etc.ms-QyCRGr

  • Oh thank goodness! I’ll just inform my body of that and then it will realize its error and poof magically into alignment with your views of what it means to be young.

 

 

If you’re wondering what you CAN say to a zebra then try this:

If they confide in you about their illness say those two magic words–

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If they don’t then just treat them like a normal person!… Sick people are also just, well, people.

You Can’t Go Back

The other day I got some good news. When my dad got home from work I excitedly told him about some extra scholarship money I’d been awarded because of my academic performance. My 14 year-old brother, who was in the next room playing Battlefront (and evidently eavesdropping) said, “you should get a scholarship for sports.”

I pointed out the teeny flaw in that master plan: “I don’t play sports anymore.”

Look we all know that teenage boys can be more than a bit obtuse, and my little bro is no exception. Currently he is in the sports, fitness and body image obsessed stage. He tells us how he is “teased” by his friends about his muscles being too big; he works out way more than he should, and he flexes A LOT. Another thing he does a lot is make insensitive inquiries such as, “when you gunna start running again?” Or, “Are you ever gonna play basketball again?” And even,” When you gun’ get back in shape?”

I get it. He misses the older sister that he could be proud of. He misses the girl that ran five miles a day and was known for her white-girl hops on the basketball court. He misses the sister that could do as many pull-ups as the boys and who’s life revolved around the court and the gym.  I get it because I miss her too.

I also get that it’s much cooler to have a sister who plays college basketball than one who gets good grades and blogs about being sick.

I get it, but he doesn’t. I’ve tried to explain it to him several times: “I’ve tried to get back in shape but I keep getting infections.” Or, “I’m trying but my body gets very sick if I work out too hard now.” And even the hardest one, “No, I don’t think I’ll ever play basketball again. Not for school anyways.”

He doesn’t understand how before, even with the PI, I could do all these things (even though he doesn’t realize what a struggle that was) and now I can’t. For a while neither could I.

Then I figured it out: you can’t go back.

I can’t go back. My body’s not the body it was before I got sick. I’m not the person I was before I got sick. No matter what I do, I can’t erase that year.

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My parents weren’t good at action shots, so they had to wait for a FT. Also I think a teammate’s parent took this.

Years of running, lifting, sprinting up and down the court–they’re all gone, unraveled and eaten away by months of deconditioning, sickness and undernourishment. The muscles I worked so hard to build over years of training were metabolized to keep my organs going. My heart, which once propelled me through miles with ease, withered and weakened so much that mild cardio now gives me shaking chills. It’s like the first 18 years of my life never happened–like the strong, athletic version of Miranda never even existed.75051_530260573738353_2147077193_n

On the other hand those long, lonely nights when I was too sick to sleep–they’re with me still. They’re with me when I close my eyes. They’re with me when I walk through the Blue-Ridge sunshine to class. They’re with me as I smile down at my sleeping niece. They’re with me when I feel, as I often do, full to the bursting with a life worth living. Those nights, those hardest moments of my life, they’re a piece of me now.

You can’t go back.

So you go forward.

I can’t play basketball anymore, so I put everything I’ve got into my school.

I can’t run out my feelings anymore, so I write.

I can’t do intense workouts anymore so I do yoga, walk, bike and build up slowly.

I can’t work as hard at a lot of things as I did before, so I work smarter.

I can’t be the person I was before so I try to become someone better, someone stronger, someone kinder.

You can’t go back. It’s hard, but it’s probably a good thing.

 

 

What a Bloody Mess!

“What a mess!” I thought. “What a bloody mess!” I wasn’t British cursing–I meant literally bloody.

I had settled into the recliner after getting my infusion going last Friday. Needles in? Check. Pump started? Check. Blanket? Check. Gatorade? Check. Anne with an E? Check and check.

I got caught up in the show, continuously thinking “this didn’t happen in the book,” and cringing in second-hand embarrassment from Anne’s antics. I neglected to check my sites as often as I should have–at all in fact, until I felt a weird trickle running down my left leg. Crap. Crap crap crap. I knew what that meant. I stuck my hand into my sweatpants and felt the left side of my leg where I had placed the needle half an hour before and was greeted by a wet, sticky mess. That confirmed it. My site was leaking.

With a groan, that for once had nothing to do with what Anne was doing on the TV, I got up and went into the kitchen to assess the damage further. Down went the sweatpants. Up went the leg of my bball shorts. Another Mormon curse word or two as I saw that I wasn’t just leaking Gammagard, I was also leaking blood. Rather a lot for such a teeny, tiny hole in my leg.

I’ve done more than 150 sub-q infusions by now. I’ve had leaking medicine, blood in the tube from hitting a blood vessel, asthma attacks, headaches, chills, extremely painful needle sites that rub too close to the muscle, bent needles, needles falling out mid-infusion, faulty tubing–just about everything. But this was the first time I ever leaked blood.

As always before starting the pump I checked to make sure that my needles hadn’t landed in any blood vessels; once the needles are in I pull back on the syringe and if blood comes into the tube, that means trouble–I can’t use that site. I had done this on Friday as usual and it was all clear! So I shouldn’t have been bleeding… but I was.

I talked to an infusion nurse about it Monday. She said, “that’s weird.” (If I had a nickel for every time a health care professional has said that to me…) Usually when leaking occurs it’s because the needle isn’t long enough–it’s not getting deep enough into your fat tissue. But based on my weight and height the nurse was pretty sure that wasn’t the problem, and we were both reluctant to go up to the next needle size–12 mm (yikes).

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This is a 9mm needle

Instead she recommended I try using more sites. For a while now I’ve just been using two, which I know is pushing it. You’re really only supposed to have 15-30ml of fluid per site; with just two I’m demanding each take about 50ml. That’s a lot.

Friday after I discovered the leak, I had to pinch off the tubing and take the needle out of that side, so my right leg had to take about 80ml of fluid. That was seriously ouchy. I should have taken a picture–it was pretty hilariously swollen–but I didn’t. Just imagine an angrily red grapefruit on the side of my leg and you’ve about got it.

So now I have to use a three needle set.

 

Which is fine. I actually used a four needle set for the first couple years I did sub-q, then I switched because I liked only having to stick twice per infusion. I’ve never used the trifurcated sets much because, well, it’s silly but the lack of symmetry bothers me; with three needles there’s always one side with two and one side with only one. It’s weird. But since my skin is done with this 50ml-per-site foolishness I guess my OCD side will just have to deal.

The question is then: how do I decide which side to torture more?… Flip for it? Eeny, meeny, miny, moe? It’s a conundrum alright.

 

A Post-Op, a Follow-Up, an Infection–Isn’t Summer Fun?

Thursday June 15th: 2 Weeks Post-Op

Today I had my post-op appointment for my gallbladder surgery. Dr. Jones said I’m healing great. He took off the last of my steri-strips and checked to make sure the muscles underneath the incisions are coming together. I’m still not allowed to lift anything over 20 lbs or do strenuous exercise for another two weeks (which includes body weight stuff like yoga- I asked), but after that I’m clear to do as I please. I think that includes life in general–so if you see me robbing a chocolate store on TV or something, don’t worry–Dr. Jones said it’s ok.

I’m hardly in any pain any more unless I try to use or stretch my ab muscles too much. The most residual soreness is in the area where Mr. Gallbladder used to live–it feels like I’ve got a stitch/cramp there underneath my ribcage.

My digestion is also still adjusting to  the vacancy, but is doing quite well over all. After all the horror stories I read about crazy bad diarrhea post-gb removal, I had a very slight case of the runs for less than a week. I have been able to eat cheese, yogurt, lactose-free ice cream, burgers, potato chips, brownies, whip cream, avacado, and lots of other yummylicious foods that caused gb attacks before the op. I am SO happy I got the surgery. I don’t miss the little green fella one bit!

Monday June 19th:

I had a follow-up with my neurologist today. My migraines have improved from daily to 2-3 times per week–much better, but still pretty out of control. Doc L is an awesome neurologist; he listens, talks to me like an equal, and most importantly- hasn’t tried to hold my hand, not even once (my neurologist in HS always held my hand, no matter what diversionary tactics I employed to avoid it). But even he admits that total control–zero headaches for months–is likely out of reach in my case. So for now we are shooting for better control, and we’ll go from there.

Since my body seems to handle the Prozac well, we are doubling the dose (to a normal adult dose) and hoping it will get me down to 1 or so migraines a week. Unfortunately the jump in dose has brought back my favorite of Prozac’s side effects: I can’t sleep! Not a wink. Luckily it should pass in a couple weeks. It did the first time.

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Until then this is me

Thursday June 22nd: 

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I have finally accepted it. I have a sinus infection, for the second month in a row. I am frustrated because it’s been just over a year since I had sinus and turbinate surgery and I’m wondering if I’m going to need another soon. With my Ig infusions I shouldn’t be getting infections this much, but they just keep coming one after another.

My immunologist doesn’t have answers for me, but he is trying. When I get an infection I don’t even have to go in, I just message him and he sends the antibiotic script to my pharmacy. This time I’m on Amox-Clav for ten days,which is an optimistically short course, but hopefully it’ll do the trick.

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I know it’s silly but every time I have to go on antibioticsI feel like a bit of a failure. Every time I go over things in my head– maybe if I had done A, B, or C differently I wouldn’t have gotten an infection. Maybe if I ate better, slept more, got more or less exercise, didn’t do this and did do that…

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I’ll see Doc C for a follow-up in a couple weeks and we’ll talk it over, see what more can be done. It’s a constant climb and I’m always just hoping to find a good foot hold or a little ledge where I can catch my breath. But even though it’s hard–it’s so, so hard sometimes–when I stop to look around, man it’s still a beautiful view.

It Get’s Better: My PI Diagnosis

Since we started out the week in high school hell it seems only fair that I finish up the week with a happily ever after. So here it is:

I can’t remember the exact date I found out. Isn’t that horrible? Until now I have never been able to bring myself to even write about it; I write about everything big in my life, but this one day was too perfect to even try to capture. After four years, I’ll finally take a shot at it, but just know there really are no words good enough…some things will inevitably be lost in translation.

It was in May, I know that–towards the rear-end of my senior year. I had been working with Dr. B, an allergist/immunologist, for over a year. We had tried just about everything to find the cause of my unending infections, but just as they had my whole life, everything kept coming back normal. Allergies: negative, except for a couple of foods. Immune globulin count: normal. Vaccine response: normal. Autoimmune markers: negative. But unlike every other doctor before her, Dr. B never gave up. I would come in for an appointment on Monday and she would tell me things she had thought of while researching my case over the weekend. When she was at a loss she consulted with other immunologists. She and her nurse put in hours working with Tri Care to get coverage for super-specialized tests that one of her colleagues did in D.C.

I had to drive up to her Williamsburg office to get the blood drawn and then it was shipped right away to the specialized lab in D.C. Like always I hoped, but after years of disappointment I didn’t really believe anything would come of it. A couple weeks later I had a follow-up with Dr. B early in the morning. I was feeling very sick from another sinus infection and I almost didn’t go, but my parents insisted that I at least go so she could give me some antibiotics. We drove to the office almost without thinking–we had been there so often it had become a routine, a habit even.

I think I laid down on the bench as we waited for her to come into the room; I was sick, exhausted and in pain. I was focused on getting in and out as fast as possible–the blood test results didn’t even cross my mind. When Dr. B walked in she seemed…weird. As I talked to her about the sinus infection she was obviously distracted. She quickly promised me antibiotics and then took a deep breath. Was I crazy or was she fighting a smile?

I don’t remember her exact words. They should be ingrained in my mind, but I think the emotions of that day blurred everything else. The test results were back from D.C. They showed that my B cells don’t mature correctly, which means that the antibodies they produce, though enough in quantity, are crap. I imagined the command center of my immune system being run by a bunch of teenage boys–no wonder I was sick so much. My immature B cells probably couldn’t focus on anything other than food, sports and video games long enough to mount an appropriate defense against invaders…

I emerged from imagining the inner workings of my immune system to find that, oh poop, Dr. B was still talking. Luckily my mom was there to pay attention during my flights of fancy. My favorite doctor in the world went on to explain about Ig infusions–how they would be lifelong, but they could really help by providing my body with some antibodies not produced by teenage-boy B cells. Her smile faltered as she noticed the tears welling up in my eyes. Again mom came to the rescue and explained for me, since my brain had temporarily stopped manufacturing words, that they were tears of joy. I wasn’t crying because I’d have to do Ig infusions for the rest of my life–I was crying because I got to.

Super mom helped me out again as we walked out of the room, she said she’d take care of the check-out so I could go sit in the car. The warm car felt good to my fevered body; I shut the door and it seemed to wrap me in its sun-baked embrace. I sat there and I smiled and I cried. The spring sun made the world beautiful and light. I hadn’t noticed that before.

About a month later, the day before my eighteenth birthday, I had my very first Ig infusion.

Dante’s Inferno? Psht Try High School with PI

Seeing all the pictures of high school grads on social media has got me nostalgic for my own high school days, in the way that one might be nostalgic about food poisoning or breaking a bone….

I was first introduced to Dante’s Inferno my sophomore year of high school, which I thought very fitting as I was just beginning to realize the truth about my educational prison. As much as I disliked being forced to “read” Dante’s description of hell, I did allow that it was useful to be able to point out my current location on a map. As I looked at the drawing of hell’s many circles I imagined a pin with “you are here” stuck somewhere around the middle. But that was just english class.

Farther down, around circle eight was physics class. It was presided over by one of the hideous, horned demons of Dante’s creation. He was a bully and he hated me for the obvious and just reasons that 1) I missed class so much and 2) I wasn’t good at physics. He acted annoyed every time I approached him about needing to make up an assignment and he offered very limited after-school hours in which I was expected to do so. The only thing he communicated to me clearly was that he had no interest in helping me. In a subject I was already uncomfortable with, I was left completely on my own to learn weeks worth of material in a matter of hours. When I was there, he had no qualms about showing his dislike for me in front of the entire class and seemed to relish handing back assignments covered in derogatory red. He was hardly the first teacher to be unkind to me because of my health, but he was the worst. His class is the only one I have ever failed.

That was just circle eight though. The deepest depths of my high school hell was the attendance office. Not to be overdramatic, but if I had to choose a Satan from amongst the Tabb High School staff, it would be the attendance lady. I missed over 60 days of school my senior year and for every single absence, every time I came in late or left early, I had to face her. Every. Single. Time. Walking to her office with note in hand was like walking across the frozen lake right into the jaws of Satan himself. I never emerged from that grotesquely orange room without having been thoroughly chewed up and spit out by her gaping, drooling mouth and razor sharp teeth.

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A recent photograph of she-who-must-not-be-named. You can see my legs dangling from her mouth.

Boy oh boy did she hate me. To this day I don’t understand it–why or how any adult could harbor such antipathy towards an adolescent they hardly knew. She seemed to take it personally every time I was absent. She certainly made it VERY clear that she did not believe I was sick as much as I was. She put extra effort in several times to get me suspended for all my absences, and found any tiny loop hole to rule an absence “unexcused.” My parents had to go over her head to the principal to prevent this, but nothing they did could prevent the persecution she heaped on me any time I dared miss school–even if I had a 103 fever and double infection documented by a doctor’s note. If she could’ve, I’m sure she would have printed and distributed posters throughout the school with my face and “UNDESIRABLE #1” stamped on it.

The worst part of all this was that I wasn’t even diagnosed yet. I got asked all the time by kids I barely knew “why do you get sick so much?” It drove me crazy that they asked and even crazier that I didn’t have an answer. But at least I was only annoyed, not outright bullied by my peers. It was the adults that bullied me. They bullied me because I was sick and didn’t have a name for my sickness. They bullied me because they didn’t believe a teenager could really be that sick. They bullied me because they didn’t understand. They bullied me because I couldn’t fight back–because I was a kid and they were adults.

The thought that there are other kids going through the exact same thing right now kills me.