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When It’s All Too Much

Saturday night my gallbladder was in a bad mood. All it took was a small cup of oats and a tiny bit of chocolate chips to send it into the worst tantrum it has had so far–two hours of screaming at the top of its lungs and three more afterwards yelling and banging doors shut like a teenager. As I was laying in bed–trying and failing to sleep through the waning wrath of Mr. Gallbladder–I thought of something my sister said when I decided to start this blog: “you should write about what you do when it’s all too much.” Why would I think of that during a five hour gallbladder attack? Eh, no reason.

Honestly I do feel a little bit small, writing about when my little life is too much for me on a day we remember and reverence those who gave their lives for family, friends and country. But I’ll persevere in the simple knowledge that life is hard and no matter what our circumstance, we all have moments when it’s all too much.

The last time I had one of these moments was towards the end of February. I was sitting in French class. I was having a hard time hearing because my ears were so stuffed up; my face and head throbbed in time with my heartbeat. I had just finished the second two-week course of antibiotics I had been prescribed for this sinus infection, and my strength slumped at the realization I would need a third. There I sat in the middle of class, when all the sudden I felt I couldn’t take another second as myself. To my horror my eyes started to sting. “Mama prépare un bon dîner.” We chanted as a class. I will not cry I pled to myself. “Ma soeur Lise attend un coup de téléphone.” Not here, not now.

I made it through class. I made it to the car. I could make it no longer. I drove home with dangerously blurred eyes and when I got to my room I had a good cry.

That’s the first thing I do when it’s all too much–I cry. I don’t like crying–it makes me stuffy and gives me a headache–but sometimes there’s nothing for it. Sometimes life punches you in the gut and you just gotta cry about it.

Once my eyes were sufficiently red and swollen that the tears slowed their onslaught, I got on my knees and bowed my head. I thanked my Father in Heaven for everything I could think of; I thanked Him til my heart was as swollen as my eyes–but with gratitude instead of pain; I thanked Him til the storm inside went still.

That’s the second thing I do when it’s all too much–I choose to see all the goods things in my life that I take for granted when I get discouraged. Bit by bit I replace self-pity or self-loathing or whatever darkness I’m feeling with gratitude.

Eventually I rose from my knees. I grabbed a couple pieces of dark chocolate. I went into my sister’s room and we teased my brother’s little beagle, Bruce, by hiding his favorite ball. We laughed as he sniffed intensely at the blanket, completely oblivious to the bright orange ball sitting in plain site on the desk.

Those are the final two steps. If at all possible, eat chocolate. Then go find someone I love and goof around with them. If the world’s-worst-ball-hunter Bruce is around, well that’s a bonus.

 

Everything, Everything Gettin’ On My Nerves

I refer to the movie Everything, Everything of course, not literally everything–though I do have a migraine today so the world and everything in it is, in general, offensive to my overly-sensitized head. (Note: after getting this far with a migraine yesterday, the spinning world forced me to give up and watch Netflix instead).

If you haven’t heard about it, the movie in question is based on a questionable novel about a girl with Severe Combined Immunodeficiency. In the film/novel the girl cannot leave her house because of her immunodeficiency. Even though *spoiler alert* it turns out that her mom was lying to her and she does not actually have SCID, the impression that the audience is left with is that if she did have it she would have to live her life essentially in a bubble. Clearly the author didn’t even take the time to read the Wikipedia article on SCID. I mean, who cares if you grossly misrepresent an already poorly-understood portion of the population if it’s for the noble cause of providing the world with yet another gory teen romance?

Everything, Everything is hardly the first product of our society to distort harsh realities that people face everyday to make a buck; I can’t even count how many times the media has fed us cancer as a bucket-list-to-peaceful-death illness. No matter what illness or circumstance is being exploited though, it’s just wrong. People’s actual pain shouldn’t be monetized like that. But Everything, Everything takes it to a whole new level of ignorance. There’s already enough of that going around about chronic illness, thanks.

Maybe I can better justify my annoyance through a personal experience: at the beginning of every semester I meet with all my new professors. I give them the “Memorandum of Accommodation” letter I get from the Student Support office and explain to them about my immunodeficiency–how I often get sick and miss class because of it. One particular meeting I had last semester didn’t go as smoothly as the others have. Let’s just say there was a gap of understanding. My professor was obviously unfamiliar with the concept of immunodeficiency and I was unfamiliar with such blatant unfamiliarity. He seemed to think that when I spoke of missing class, I meant that I stayed out of class at specific times to avoid getting sick; he asked me if I had an idea of the dates I would be out. I thought buddy, if I had enough sick days to spare that I could miss class to avoid getting sick, I wouldn’t be sitting here having this conversation with you. I also might have given him a “are you slow?” look while I was thinking up an actually appropriate response (not on purpose, it just slips out onto my face sometimes). He also asked me if I sometimes wore a mask. I explained, with the patience of a martyr, that while I am very careful about germs I don’t wear a mask. With IG replacement it’s not necessary. Besides, while it might be helpful sometimes, in American culture there are really only two reasons you wear such a mask: either you are sick with a contagious illness and people should avoid you, or you are very sick with cancer or something. Understandably I should think, I have no desire to be labeled as either of those things. So no, I don’t wear a mask.

That’s the kind of misunderstanding that works like Everything, Everything fuel.

So let’s set the record straight with an assist from the Immune Deficiency Foundation: “Severe Combined Immune Deficiency (SCID, pronounced “skid”) is a potentially fatal     primary immunodeficiency in which there is combined absence of T-lymphocyte and B-lymphocyte function. There are at least 13 different genetic defects that can cause SCID. These defects lead to extreme susceptibility to very serious infections. This condition is generally considered to be the most serious of the primary immunodeficiencies. Fortunately, effective treatments, such as stem cell transplantation, exist that can cure the disorder. The future holds the promise of gene therapy for several more types of SCID.” So someone Maddy’s age with SCID, who had not undergone a bone marrow transplant, would almost certainly be dead. On the other hand, if she had been diagnosed and treated successfully with a bone marrow transplant, her immune system would have been reset and she would have been cured. Either way, she wouldn’t be confined to her house. It’s 2017 people, enough with the “bubble boy” stereotype. We’re better than that.

THINKZEBRA

Infusion Friday

It’s Friday! That means later this evening I’ll be hauling out the medical supplies and chillin with some needles in my thighs–it’s IG infusion night!

First, to start with I’ll back track a little bit with an update on the whole gallbladder drama–because I know my dozen of blood-related readers world wide are simply on the edge of their seats. I met with the surgeon yesterday and he confirmed it–the gallbladder must go. He explained the operation very well, despite the fact he was obviously on auto-pilot. I’m pretty sure he was thinking more about what he was going to have for lunch than the explanation he was giving me; he says he does about 100 of these a year, so I can hardly blame him. This is my very first one and even I was thinking about lunch! Food-related day dreams aside though, we got through the appointment and I am officially scheduled to be separated from my gallbladder on June 2nd. Sorry to break it off gb, but if it’s any consolation–it’s definitely you, not me.

Now that I am done conversing with my own organ like a lunatic, we can talk about way cooler stuff–namely IG infusions! Seriously, no matter how much I dislike sticking myself with needles and having golf ball sized lumps on my person, the inherent coolness of what I’m doing never escapes me. Not to mention how much better these nifty weekly infusions make my life. Roughly 98.73% better. Roughly.

Obviously I love my infusions, and will therefore write about them repeatedly, so today we’ll stick to the basics: IG stands for immune globulin. Healthy people donate plasma and the immune globulins are separated out. Each time I infuse a dose of Gammagard, I receive antibodies pooled from about 10,000-50,000 plasma donors, so I can get the broadest range of coverage possible. See how neat this is?

I do my infusions subcutaneously, meaning the medicine is injected just under the skin and is slowly absorbed through the fat. My infusions are done weekly, though some forms of SCIG can be done every other week. IG infusions can also be done by IV–directly into the vein–once a month. I’ve tried them all, but the weekly SCIG infusions work best for me in terms of infection prevention and how I tolerate the infusions themselves; typically, SCIG infusions have much less severe side effects than IV infusions. Plus, I can do SCIG infusions by myself at home, while a nurse is required to administer the IV infusions. Some might not like doing it themselves, but I like getting to be the one in control and having greater flexibility in scheduling, etc. Not to mention sitting on my own couch, watching Harry Potter for the 100th time and snacking on something yummy is approximately way more fun than spendings hours in a hospital infusion center.

So enough words. Here are some pictures.

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After an infusion in my tummy–yes those are flying pig pjs. They are the coolest.

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Needle in my front thigh

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Everything prepped and ready to go

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Infusion set up at home

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Me pulling the Gammagard into the syringe

 

The Domino Effect

If you’ve ever wondered why people with chronic illnesses can’t just take some medicine and go back to things as usual, I submit the subject of this post to widen the highways of your understanding: the domino effect. The longer I’ve dealt with chronic illness the more I’ve come to understand that there is no illness, or medicine to treat said illness, thats effects are isolated to only one part of the body. Allow me to illustrate by relating the avalanche unleashed on me this year (dramatic I know but hey, it’s a killer metaphor-pun intended 😉 by one part of my body yelling out in pain.

The fall semester was going along swimmingly–September and the first part of October I felt the best I had in a good long while. Then the back half of October brought about 99 problems, all of which were related to the invisible hatchet that had implanted itself into my head. Perhaps it was the stress of midterms, or maybe my body had simply become bored of behaving–for whatever reason chronic migraine resurfaced in my life with a vengeance. You couldn’t even really call it a flare- it was more like full-blown fireworks painting the sky with the words “I’m back!” It got so bad that in the beginning of January, I did something I swore I’d never do again–go back on Topomax.

For my fortunate friends unfamiliar with Topomax, it is technically an anti-seizure drug, but it is also one of the few FDA approved drugs for the treatment of chronic migraines. A fun fact that I learned after being on it for more than a year in high school: it is colloquially known as Dopomax, because of its unfortunate tendency to make idiots of its users. But that is only one of its many fun side effects (side note–not everybody reacts to medicines the same; for many people Topomax has been a miracle drug with few side effects, so don’t just go off of my experience). In spite of poignant teenage memories of this drug causing me to believe I was getting dumb with age, I became so desperate for relief from the unrelenting pain that January third I swallowed a dose of Dopomax for the first time in over two years.

Thankfully I lucked into a neurologist that listened to my concerns about going back on this particular drug, so he started me on the lowest possible dose–a “sprinkle” dose designed for pediatric patients. But it didn’t matter. No matter how small the dose, my body refuses to get along with Topomax. This time it didn’t seem to effect my cognition as much, but it hit me harder in different ways. Since my sinus surgery about a year ago I hadn’t had a sinus infection requiring treatment with antibiotics. Two weeks after starting Topomax I was forced to go on the first of four rounds of antibiotics that dominated the first half of my spring semester. Although Topomax helped tremendously with my migraines, it destroyed my immune system, and the two and a half months I was on it were almost as bad as the years before I started on IG infusions. I couldn’t catch a break! A cold would lead to a sinus infection and I would catch another cold before I had even finished the antibiotics for the infection.

That is the domino effect–treating one problem worsens another or causes a new one altogether. I could not continue on Topomax because of the devastation it was causing my immune system, which will always be the central pillar of my health problems. On the reverse side, IG infusions often trigger migraines. Antibiotics for infections aggravate my severe IBS and lower my immune system. Steroids for infections and asthma flares decimate the immune system. Pain killers can cause stomach, liver, kidney problems–scratch that almost any medicine can cause stomach, liver and/or kidney problems. These are just a few examples. You see? The dominos never stop falling–round and round it goes, tumbling one into another indefinitely. That is one of the reasons why chronic illness is so, well, chronic. You can never quite get ahead of it.

To end this post on a more positive note: since stopping Topomax my immune system has been doing much better. I am also finding moderate migraine relief from an unexpected source–Prozac. It’s an SSRI that helps with migraines because of its action related to Serotonin. I have almost no side effects from it, which as we have been discussing, is nothing short of a miracle. It’s often hard to find the right fit with migraine medication; I was blessed to find it on only the second try this time around. So for those of you still struggling to find relief, hang in there–there is hope ahead yet.

 

 

Needlin to be Normal- a Blog About…

To start with, let me explain the title of this blog. “Needlin to be Normal” refers to my need for needles. Each week I take a set of 2-4 needles, and I jab em into my skin. For about two hours “medicine”- actually antibodies separated from human plasma suspended in a solution- flow into my fat through those needles, causing a nice big, swollen lump to form. Then I take the needles out, stick a bandaid over the needle-stick and go about my life. One week later I do it all again. I call it my infusion night, aka movie night.

Still confused? Understandable. Here’s the missing piece of the puzzle: I have a primary immunodeficiency. Which in my case, means that although my body produces the right amount of antibodies, it pumps out some seriously messed up ones–so I get sick over and over again with the same things and every little virus leads straight to a bacterial infection. At least, that’s what happened before I developed my weekly needle habit- now with the help of the IG infusions I do much better. Despite my need for needles and my sizable collection of prescription meds, when I leave the house (with my infusion lumps carefully camouflaged) I get to portray the enjoyable part of “average college kid.” Thanks to my infusions, I get to be (almost) normal. Get it?

So that explains the name and a bit what this blog is about, but really this blog is about more than PI or any one illness(and trust me I have a few to choose from)–it’s about trying to live a “normal” life with any chronic illness(es). It’s about wanting to be able to be real about life with less-than-perfect health without the stigma that chronic sufferers so often get stuck with. It’s about showing that you can be sick without being “the sick one”–that your illness doesn’t own you–that my illness doesn’t own me.

Really I’m still figuring it out. I definitely don’t have all the answers. I’m not starting this blog because I think I know it all. I’m starting it because I want to share the adventure of figuring it all out–the ups, the downs, the loop de loops–with others also riding the crazy chronic coaster.