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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.

Keeping Chronic Illness Real: Augustus Waters and I Share a Thought

Just in case you’re not a teenage girl- Augustus Waters is a fictional creation from John Green’s The Fault in Our Stars. It’s a somewhat clichĂ© story of two teenagers dying from cancer who fall in love, but I must admit I actually own both the book and the movie. I liked that Green at least made an effort to make it real–some of the thoughts and feelings his young characters express were very, very real to me. I’m not sure why but this morning I was thinking about the one sentence from that book that has stayed with me for the two years since I read it–a three word phrase that Augustus tearfully repeats over and over again when the weight of his illness is simply too much.

“I hate myself.”

“I hate myself I hate myself.” He says. He is upset because he wanted to do just one thing for himself and he couldn’t. He realizes his illness has taken his independence–has taken over his entire life.

I remember once thinking those exact words. I was in the shower, crying. I’d just had a wonderful day–I got to go on multiple walks in the beautiful spring weather and I’d gotten to eat lots of yummy food. I had done normal people stuff and at the time that still wasn’t normal to me. It was a month or two after I had started being able to eat solid food again–I know I haven’t really told that story yet, I will sometime–suffice it to say I had been very sick for about a year. At the point I found myself crying in the shower I had been getting better for a couple months. I’d just had a great day and I was miserable. It all still seemed too good to be true–a normal day, the possibility of a normal life again. Every day, every second, I was terrified that it would all disappear–that I would get sick again. I was so angry at myself that I couldn’t just enjoy it all, that I was so afraid all the time. I felt so small. I thought those three poisonous little words again and again as I sobbed.

The truth is I don’t hate myself. Sometimes I hate being me. Sometimes I’m disappointed that I can’t be stronger, braver or more patient. But I don’t hate myself.

When people tell me they admire how I handle my illness I shudder inside. I think of all the moments when I have been so small, angrily crying “not fair;” I think of all the times I have looked around at my peers with envy and bitterness that I cannot do what they can do, that I will never be one of them. I try to be positive and do my best with what I have, but I’m human. Sometimes I get so tired; I become a small, weak shadow that the better part of me loathes, but here’s the kicker: that’s okay.

It’s okay to get mad, to break down, to be small.

Moments like those, they always pass. They pass for me and they will pass for you too. Once they do we pick up, we go on. Some days that’s the best we’ve got. Why should we feel bad about not being perfectly strong or patient or whatever? We’re all just lost boys and girls, trying to present our best, bravest face as we look around hoping that someone else knows what to do.

We’re all a little lost.

There was a girl I knew at school. She had to use canes to help her walk and had a hard time speaking clearly. One day in church we were talking about gratitude and the teacher asked for examples of things we are grateful for. This girl raised her hand and said “I’m grateful for my disability. I can help other people like me. I can help people better because of my disability.”

Later that week I had one of my “when it’s all too much” breakdowns. My sister saw that I was crying and gently coaxed me until I haltingly choked out what was strangling me inside, “I just can’t do it anymore. I’m so tired of being in so much pain. I can’t be like Melba. I can’t be grateful for this.”

I can’t be grateful for my illness.

Look at that, I’m no angel. I used to hate myself for it, but what good does that do? Does it help me handle my illness better? No. It makes me feel depressed. It makes me feel like it’s all for nothing–all the struggle and pain. Well if it was my choice I wouldn’t choose it–life with a body constantly breaking down–but I do know it’s not all for nothing.

What’s it all for then you may ask? Well geez I’m just a lost kid like the rest of you, how’d you expect me to know? I’m just running on faith–faith in a God who loves me and knows what’s best for me–knows what all this is for.