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It’ll Pass

One of my favorite book series is Anne of Green Gables. In one of the later books after Anne is married she befriends the old sailor Captain Jim that runs the local lighthouse. Captain Jim is a lovably simple fella, but sometimes he says things deeply profound. One of those quotes, which I am sure I will butcher, has stuck with me and always comes to mind on particularly rough days. He said something along the lines of “Even on those days when I’m hurtin real bad I feel sorta cheerful cus I know sooner or later it’ll pass.”

Sooner or later it’ll pass.

Captain Jim would know–he weathered plenty of storms in his time as a sailor.

So far in my life I’ve always found this to be true. All the pain I’ve felt–migraines, broken bones, surgeries, sprains, strains, infections, gallbladder attacks, unbearable cramps, gastroparesis, depression–no matter what the pain or the cause of it, always it has passed.

Sometimes in the moment of extreme pain you can’t imagine it ever will. It seems it will last forever–that there never has been and never will be anything except this all-encompassing pain. Hundreds of times I’ve felt like I couldn’t make it til it passed, I couldn’t handle one more second of pain. Somehow I always did. Always do. And then eventually it always eases. Always passes.

I’ve been thinking about that with this cough. I’ve already been sick for more than a month. It seems so long and yet it could last for much longer still.

At the absolute worst point–when the coughing fits came about 40-50 times a day and each one left me gasping, choking, crying and each cough was agony to my ribs–I felt then I couldn’t handle it. Each time I felt like I couldn’t take even one more coughing fit. I wondered how I was supposed to keep going with my classes–or at all really. Each of the jabillion times I woke up in the night to cough and choke and choke and cough one thought kept going through my mind. This Sucks.

But each time I handled just one more coughing fit. One more day. One more night.

And then this past week something awesome happened. All the sudden it started to ease. Coughing fits were less intense. I stopped needing my handy vomit bags so much. I felt like eating more (something about regularly coughing up part of whatever you last ate makes it not very appealing…). Then coughing fits came less frequently. Somehow by the middle of the week I could go an hour, or two even without a single fit! Suddenly I could go to all of my classes and it was hard, but doable. Without even realizing it at first I had made it through the worst and it started to ease.

Believe it or not, it looks like even whooping cough passes. And it might even do so before the hundred day mark!

So head up, feet forward and be a little cheerful, cus sooner or later it’ll pass.

A Baby Disease Busted My Rib

Ok so remember how I said I had a bad case of bronchitis and then disappeared a couple weeks ago? Well it turns out I did not have bronchitis. I do almost definitely have whooping cough.

Technically the swab results from my seven hour stop off at the ER this past Wednesday

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A rare action shot of an ER patient hoping that the footsteps she hears is someone coming to tell her something useful. Also yes I’m doing hw. French.

haven’t come back yet, but my symptoms are dead on AND there has been a verified case of whooping cough at my school. Add to that my incompetent immune system that doesn’t gain immunity from vacccines annndddd. Boom. You’ve got a twenty-two-year-old with a full-blown case of whooping cough.

From the very first week of school there’s been a bad “cold” going around. I’m thinking that really, most people have had a watered-down case of whooping cough. But luckily for me, other zebras and new-borns, you don’t need to have a full case of whooping cough to give the full-blown thing to someone else.

So what does a full-blown case of whooping cough look like in an adult?

Well first you get a “cold.” It’s really not even that bad of a cold. Then after about a week you start getting a nagging cough. That gets worse for a couple weeks until you find yourself having anywhere from 15-50 coughing fits a day that are so intense you throw up and gasp for air as seemingly infinite amounts of sticky mucus obscure your airways. (In my case the very worst of the attacks only lasted for a little over a week.) Then things get just a little better. Your coughing fits are less frequent. You aren’t choking, gasping and throwing up quite so much when you cough. You stop feeling like you’re going to black out with each coughing fit. That’s where I’m at now. Apparently this bit can last anywhere from 2-10 weeks.

Oh yeah and I forgot to mention–you might cough so hard that you break, bruise or dislocate a rib or so. It freakin hurts, but don’t worry there’s not much they can do about it.

That’s maybe the worst thing about whooping cough–there’s almost nothing that can be done. If caught early enough a course of antibiotics can lessen the severity of the case, but otherwise you basically just have to ride it out.

In China whooping cough is known as the 100 days cough, because it often lasts for three months or longer. So I pulled out my calendar and counted 100 days from the day I got sick. According to Chinese tradition I should be better by December 19th, give or take a few days. I have no idea why I thought that would help. I guess I can start a count down or something. At this point I’m at least a month in so… only 70 more days to go!

This is definitely not how I wanted to start off the semester. Or finish it… But it is what it is. It’s not going to make for the smoothest semester, that’s for sure, but I’ll do my best. And that includes making a sincere effort not to vomit or pass out in class 😉

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We swiped a bunch of the ER vomit bags so we could feel like our trip hadn’t been a total waste. I carry one around everywhere to catch whatever comes up during a coughing fit.

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Doing the nebulizer. This thing is almost as old as I am and it’s still kickin! We call it the Darth Vader machine.

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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Starting off School PI Style

Monday morning I got my allergy shot, put my allergy serum in a cooler and headed to Buena Vista, VA. Well really there was a bit more to it than that. Like a whole ton of procrastination that led to a whole ton of last minute packing and general scrambling. But in the end I made it and so far it doesn’t appear that I forgot anything super duper important. So we’ll pronounce that a win.

Tuesday morning I called Aetna Specialty Pharmacy to set up my monthly shipment of infusion meds and supplies. On the bright side, I did reach an actual person relatively quickly–something I never quite achieved when I called last week. That’s where the bright side ends though I’m afraid. From there on it was all bad news.

Bad News 1) Your doctor hasn’t submitted the necessary forms to renew authorization on your infusions so your authorization has expired and you can’t get your stuff until that is fixed. Unless you happen to have a few thousand dollars lying around to pay for the whole thing yourself… (I do not)

Bad News 2) Aetna hates you and the medicine you are on because you are both too expensive. So you have to switch medicines. Also you have only one option as to what to switch to. Basically this is a medical dictatorship. Be grateful that it is illegal for Aetna to get rid of you like it has your poor Gammagard. Just in case you should probably be on the look out for assassins hiding behind piles of medical forms and bills.

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When I think of dictators…

 

Bad News 2.5) Bonus: your copay assistance is currently coming from the company that makes Gammagard so that goes bye bye too. Your new medicine also has copay assistance, but there’s no way you’ll be able to get it for this month because the application process takes several weeks and your infusion is in three days (if you even get your shipment by then, which is somewhat doubtful). So basically you’re screwed. But just for this month.

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Don’t worry though, this week isn’t all dictatorial doom and gloom. There is always some rebellious patches of sunshine. Like:

  1. I made it to school again against all odds! (namely a killer migraine Monday and a crazy amount of traffic)
  2. When I was unpacking I thought that I had forgotten one of the containers with my infusion supplies in it–I did not! All infusion supplies made it safely to school with me.
  3. I managed to muscle my way in to the family practice clinic in town this week so I can start getting my allergy shots there next week despite the influx of students trying to get last-minute physicals, etc.
  4. Did I mention I’m at school again? Yay so excited!
  5. I have spent the last two days under a figurative (and sometimes literal) pile of allthree of my adorable nieces and I get to spend the whole year with them!

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    Like this but with little girls

  6. I had a dream that when my new med came (Gammunex-c) it came with a box of awesome stuff like Minion-shaped Benadryl and Harry Potter bandaids. So I feel better about having to switch and fully expect my dream to come true. (But also in the realm of reality I talked to people in my CVID Facebook group and everyone on Gammunex-c seems to be happy with it)
  7. I got a bunch of my school books and I’m SO EXCITED to read them. (Remember I’m and english major so I get to read good stuff most of the time)
  8. Last month my IG levels were checked and they were really good, so even if my infusion is late I should still be in pretty good shape.

I could go on indefinitely, but I’ll control myself. The point is this week has been crazy, stressful and hard, but also awesome.

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Dermatologist Disappoints; I’m Reminded Why Mom is Banned

About two months ago Hot Doctor did a punch biopsy on a skin lesion on my left hand. A couple weeks later I got the results of the biopsy–inconclusive. So they decided to take the whole thing off. Two weeks ago Hot Doctor cancelled the procedure saying he had decided that it would best for a dermatologist to do it. I waited two weeks to get into the specialist’s and finally yesterday the big day arrived…

Except it was not a big day. It was a stupid day.

Against my better judgement I allowed my mom to accompany me to the procedure because she was worried about me driving myself home afterwards or something. I don’t know. Here’s the problem with that:

  1. She can never completely control herself and let me speak for myself.
  2. I’m super young looking, so when my mom comes to appointments the doctors tend to speak to her over me and just generally fail to treat me like an adult. (If I’m by myself they have to assume that I’m at least eighteen)

 

So perhaps the appointment was doomed from the beginning. But it certainly didn’t improve with the arrival of the dermatologist I’d been waiting two weeks to see. In he walked–neon orange polo, khaki pants, bushy beard and a shiny, bald head–looking as if he just got back from a golf tournament for the color-blind. He wasted no time in establishing respectful communication by complimenting my pretty, bright flower pants as if I were a ten-year-old. Then he furthered this mutual respect by making it obvious how unfamiliar he was with my case, how uninterested he was, and how much of a hurry he was in.

Ultimately we convinced him not to follow through on his initial, extremely helpful impulse to do absolutely nothing. Well actually, no he still did nothing. But he had his nurse do something…another. freakin. biopsy. This time a shave biopsy, in which they just shaved the bump part off the top. The dermatologist theorized that this will make it go away, because everyone knows that if you just cut the top off something and leave the roots it never, ever grows back.

You can probably tell by my tone that I have totally let this go.

The part that I have most easily gotten over is that the dermatologist scared young, inexperienced Hot Doctor into referring me to him instead only to have his nurse do all the actual work. I’m pretty sure Hot Doctor is at least as qualified as a nurse, especially to do just another version of something he already did!

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In the end all I gained from yesterday was another hole in my hand, a firm conviction to never allow my mother to come to any appointment short of surgery ever again (I still love you though mom 😉 ) and a blanket prejudice against all dermatologists. So yeah, big day.

11 Good Things That Come From Chronic Illness

1)  You care less what others think of you.

  • In high school, perhaps the most self-conscious, image-obsessed stage of most people’s lives, I had the good fortune to not give a crap. Quite frankly, I had bigger problems than what so-and-so thought of me, how cool I was or how many friends I had–instead I worried about infections, medical tests, doctor’s appointments and injuries. I worried they wouldn’t let me graduate because of how many days of school I missed. I worried about missing another game and letting my team down. I certainly didn’t worry about making people like me. Being sick gave me a broader perspective.

 

2) You find your own source of strength and confidence.

  • Even though I have an awesome support system from my family and a few good friends, ultimately it’s my illness. I’m the one who has to deal with it every day. I’m the one who has to make the call that I have another infection. I’m the one who has to stick the needles in each week. When you have a chronic illness it’s sink or swim–and that unlocks strength and endurance that you didn’t know you had.

 

3) You value independence.

  • One of the hardest aspects of chronic illness is that it can take away some or all of your independence. Having to depend on other people and feel like you are a burden, that really smarts. But that just makes you all the more determined to do what you can yourself and value whatever independence you are able to achieve.

 

4) You learn how to prioritize.

  • With limited spoons (or chocolate ), you have to choose carefully how to spend them. In my own life that has helped me clarify what is most important. One of my favorite quotes is:  “When you cannot do what you have always done, then you only do what matters most.” -Robert D. Hales

 

5) You learn to go with the flow.

  • Like I talked about last week, chronic illness is crazy unpredictable. You have to accept that you aren’t in control and adjust minute by minute, day by day.

 

6) You realize earlier what is most important.

  • I’m 22. So what is usually most important to 22-year-olds? I’m so out of touch that I’m really not sure… What I do know is what actually matters in life–working hard, helping others, striving each day to become more than you were yesterday, aaannndddd chocolate. Of course.

 

7) You are more grateful for little things.

  • Do you ever stop and think “HOLY CRAP THIS FOOD IS SO GOOD I’M SO GRATEFUL I GET TO EAT IT!” I do. All the time. Before gastroparesis came into my life I never thought to be grateful for something as mundane and everyday as being able to eat.

 

8) You are always working towards something.

  • No matter how sick you are with a chronic illness there’s always a goal in mind. Whether it’s getting healthy, getting stronger, living as long as you can, or just getting through the day, you are constantly fighting for something. That gives you a warrior mentality.

 

9) You see people for who they really are.

  • It’s incredibly valuable to know those who will stick with you through thick and thin, through week after week of cancelled plans, through grumpy pain days and break downs. Being sick reveals those who are most important in your life.

 

10) You empathize with others better.

  • I’m not naturally a super empathetic person (my Myers-Briggs type is INTJ), but my own suffering has softened me to the suffering of others. I understand better how they feel. That understanding leads me to want to help them. My experiences with sickness and pain enable me to connect with others in a way I never could have before.

 

11) You become an endurance master.

  • Living with chronic illness is dealing with constant setbacks and discomfort. It is unrelenting, so you develop incredible endurance just to be able to live each day–you have to.

The Chocolate Chest Theory

Today is a perfect day to talk about chocolate. Why? Well isn’t every day?

We Macfarlanes take our chocolate seriously. Two of my dad’s great loves are chocolate and wood working, so a couple years ago he decided to combine the two and make himself a “chocolate chest.” When he first told me the purpose of this chest he was making I thought he was joking–he was not.

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The Chocolate Chest

I consider myself to be an authority on very little, but my life thus far has given me reasonable education in at least two categories: chocolate and chronic illness. Both of them are apart of my daily life. Both of them, one might even argue, are written in my genetics.

So I decided to follow dear-old-dad’s example and combine these two faucets of my life into one. The product: The Chocolate Chest Theory.

If you have a chronic illness you’ve probably heard of The Spoon Theory–it explains the limited energy/strength a person with chronic illness has to work with each day (if you haven’t heard of it I encourage you to look it up).

The Chocolate Chest Theory is like that, except tastier.

Let’s say everyone has a chocolate chest. The chocolate in there is your energy for the week. A typical chocolate chest looks like this at the beginning of the week:

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All that chocolate you get all to yourself–more than enough most of the time right?

Well a person with chronic illness is like my pops–they don’t get the chocolate all to themselves. Each illness is like one of dad’s chocolate-loving children and grandchildren–they (we) eat away most of the chocolate before he can even get to it! So instead of starting the week off with a nice full store of strength, a person with chronic illness opens their chocolate chest Monday morning to find something more like this:

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Not only is there barely even any chocolate, but it’s mostly the gross stuff like baking chocolate or *gag* white chocolate. That’s all the strength and energy a person with chronic illness has to work with for the entire week. Because our illnesses eat away so much of our chocolate, we have to be very careful how we use what is left to us.

In my own life I spend almost all my chocolate on being a full-time student. Then if there’s anything left it is reserved for church, family and exercise. When I’m asked about extracurricular activities I participate in, I laugh. Extracurricular? Extra? Ain’t nobody got chocolate for that!

The Unpredictability of Chronic Illness

Yesterday was a pretty good example of how unpredictable life can be when dealing with chronic illness. I expected my Monday to go as follows:

  1. Get hand lump cut off by Hot Doctor
  2. Get allergy shot with mother
  3. Come home and write a post about getting hand lump cut off
  4. Do some chores
  5. Go to gym

Instead, my morning started off with a call from Hot Doctor explaining how he had consulted with a dermatologist and they decided it would be better for me to get my skin lesion cut off by a skin specialist. He said they decided this because of the size, location and the fact that they don’t know what it is so they want to get the whole thing to send off to pathology. So my procedure was cancelled and I must now await the dermatologist’s office to call and schedule me. I appreciate Hot Doctor taking the time to consult with other doctors and what not, but honestly it’s not that big of a deal to me–somebody just cut the thing off!

After an unexpectedly free morning my mom and I headed to the allergist’s to get our allergy shots. It was our first time getting shots together; mom has been doing them for several years already. She was very excited to be “shot buddies.” I mean we were very excited… I’m afraid I was a disappointing shot buddy though as I was rather too focused on finishing Wuthering Heights to talk much (I finished it–it’s not my favorite).

Since we had more time than expected, we were able to stop by Barnes & Noble after our shots to use our birthday gift cards from June. I was very excited to move on to less depressing literature.

After a quick hour agonizing over whether to get Lilac Girls or a collection of all Hemingway’s books (on my part at least) we headed home. I started my chores, but only got to the part of destruction before most of the actual cleaning and organizing takes place when all the sudden I started feeling weird–tired, dizzy, tingly, kinda sick to my stomach. A few minutes later it became clear what was happening–a massive migraine had come swinging out of nowhere to one-hit-KO me. A productive evening of cleaning and working out flew out the window. Instead I spent the rest of the day dealing with my petulant head.

Like I said, my wayward Monday is a good example of why making plans with chronic illness is kind of a joke. It’s like a child pretending to drive from the backseat–they can turn their make-believe wheel all they want but they have no actual control over where they go; I can sign up to do this or commit to do that but in the end I have no control over whether I’ll be able to keep those commitments–my body is in the driver’s seat. Chronic illness laughs at plans and any pretense of control or predictability. That’s just how it is.

And it’s not such a bad thing really. Sure, it makes going to school, having a job, and even having a social life pretty near impossible sometimes (sometimes actually impossible). But it has also taught me not to worry so much about the future–thanks to my illness I’m learning to take life one day at a time, do my best with the time I’ve been given, and then trust the rest to a loving Heavenly Father. That’s not so bad really.

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