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It’s Hard Work Being Sick

Last month my normally indomitable dad got real sick with a bad chest infection. In the first case, this man who seems to exercise just as much as he sleeps, rarely gets sick. In the second, when he does get sick he usually gets over it real fast. This time that didn’t happen. He had to go on antibiotics and a bronchodilator (which he didn’t use much because it made him feel weird), miss work, and feel real lousy for a couple weeks. During this time we were having a text conversation- extended in time but limited in word count as is our way- and he said something that gave me a Loki moment: “Being sick is hard work!”

Now I was certainly not happy that my pops was so sick, but it was nice to feel understood by my nearly super-human dad. Being sick IS hard work. But that’s a hard thing to understand unless you’ve experienced it–which is why it’s so hard for healthy individuals to understand what life with chronic illness is really like. They wonder why some people with chronic illness can’t work, or if they can, only part-time; they think it laziness or *shudder* “fun” to spend the day in bed; they don’t understand when we can’t exercise, why we’re always so tired, or why we need so much rest… the list goes on and on. But luckily my dear-old-dad has the answer to them all–being sick is hard work!

Chronic illness is often a full-time job in itself.

A day in bed because of pain/sickness is by far more exhausting than a normal day up and about, and is NOT fun.

Dealing with constant pain/illness is exhausting. Ex. Haust. Ing.

Oh yeah and did I mention? Being sick is hard work!

It drives me crazy (somewhat literally) that I haven’t been able to work out basically at all this semester. You know what I have done though? I’ve had colds, migraines, stomach viruses, the flu, and 1, 2, 3 infections- including a sinus infection I’m dealing with right now. I miss running. I miss basketball. I miss being strong (although I never much cared for the lifting itself–picking things up and putting them down just isn’t that amusing to me). I miss even just being able to walk or bike or do yoga on a regular basis. (Hopefully I’ll soon be able to start the long, long climb into activity again, but it’s hard to build anything with constant interruptions from sickness).

It hurts my pride desperately that I’m not able to work. I want to be independent. I want to work. But right now school takes all I’ve got and more.

The thing is this: chronic illness is all the time. No break. It doesn’t matter if you’re out of juice physically or mentally–there are no time-outs, no subs. There is no choice but to keep going every hour of every day; no choice but to wake up every morning having to face the thing that almost broke you the day before–there is nothing but constant, relentless, hard work.

So for heaven’s sake don’t judge me if I need a nap 😉

100 Little Things That Make Me Happy

This month has been rough, no doubt about it. It seems to be the winter from hell, as far as germs are concerned. Since the semester started a month ago, I’ve had two separate stomach bugs, a strep and sinus infection combo, and now a cold. And it’s not just me–my family members and schoolmates with normal immune systems have been sick almost as much! So what are we to do? Well we could dwell on our misfortune. We could freak out about the Petri dish in which we must live our daily lives (and trust me I have). But a monk from Vietnam I’ve been reading recently might have a better idea; in Peace is Every Step Thich Nhat Hanh talks a lot about mindfulness. At a really basic level, I think of mindfulness as noticing the beauty and little blessings all around us every day. So this week I made a list of 100 of those little things that make me happy.

  1. Random 60 degree days in the middle of winter #Virginia
  2. Opening a new tube of toothpaste
  3. Waking up without a headache
  4. Being called “aunty randa” (by my niece- from anyone else that would be weird)
  5. The space heater in my room
  6. Chocolate
  7. Purring cuddles from my kitty
  8. Purple and orange sunsets
  9. Not having to be on antibiotics
  10. My flannel sheets- so cozy
  11. My flying pig pj pants
  12. Having time to read for fun
  13. Finishing a long reading for class that seemed like it would never end
  14. Class being cancelled
  15. Goodbye/Goodnight kisses from nieces
  16. Family movie nights/ infusion nights
  17. Acing an assignment
  18. Texts from my parents, always politely signed Love Dad/Mom at the bottom so I know who they’re from
  19. Family dinners
  20. Getting a chance to play the piano
  21. Being treated by a doctor as an equal partner in my care
  22. Walks
  23. Feeling my room get lighter in the early morning when I can’t sleep
  24. Corny jokes- especially my dad’s
  25. Pictures of lighthouses
  26. The sound of rain at night
  27. A cup of hot cocoa
  28. Coloring
  29. Birds singing/ chirping
  30. Baby/ toddler giggles
  31. Finding a great parking spot
  32. Autumn leaves
  33. The smell after a spring rain storm
  34. Getting a great night’s sleep
  35. Listening to scores from my favorite movies (HP, LOTR, Hunger Games, etc)
  36. Parks and Rec
  37. Making others laugh
  38. Deep conversations with people I care about
  39. Hot showers
  40. Getting my back to pop
  41. Finding a favorite pen and then writing with it
  42. Learning something new
  43. Writing on the thick, smooth side of the notebook
  44. An empty laundry basket
  45. An empty sink
  46. Having special chocolate in a secret chocolate stash
  47. Stealing chocolate from my dad’s “secret” chocolate stash
  48. Fresh mangoes and pineapples
  49. Getting through my entire To Do list
  50. Sweatpants and hoodies
  51. Finishing a bottle of antibiotics/ steroids/ other loathed medicine
  52. When anyone, especially a professor says “as it were”
  53. Quoting favorite tv shows/ movies/ books whether or not they are actually applicable to the situation
  54. Being greeted by one or more wagging tails at the door
  55. Cold nose kisses from my cat that often jerk me awake at night (I think she thinks it’s funny)
  56. Having a fire in the fireplace (and therefore having an actual fire place)
  57. Remembering what I’ve been trying to remember that’s been driving me crazy
  58. Putting on a clean pair of socks
  59. Remembering everything I needed at the grocery store
  60. Freshly changed sheets
  61. Having no copay
  62. My cat socks
  63. Spontaneous study breaks when a niece or two or three escapes their parents and wanders into my room
  64. Every day, hour, minute I’m not sick or in a lot of pain
  65. A clean and organized work space
  66. When I know just what to write
  67. Finishing an essay
  68. Eating solid food without pain/nausea
  69. Pulling out the needles at the end of an infusion
  70. Waking up and knowing I don’t have to go anywhere that day
  71. Getting to go to church on Sunday
  72. Not having to rush in the morning
  73. Doing something outside my comfort zone (it’s a very small zone)
  74. Alone time
  75. Feeling good enough to work out
  76. Waking up without an alarm clock
  77. When a medicine has no bad side effects– oh wait that doesn’t happen… When a medicine has relatively few bad side effects…
  78. Cozy sweaters
  79. Reading a good poem
  80. Stepping on crunchy leaves
  81. Feeling my kitty at the foot of my bed when I turn over in the night
  82. Pictures of Christ
  83. Skyping/Face Timing the parentals on Sunday
  84. The smell of brownies baking (or any goody really)
  85. Getting a big glob of mucus out of my chest or sinuses
  86. Not coughing (remember I had whooping cough earlier this year so the last few months not coughing has been the cherished exception)
  87. When I catch someone doing something silly because they think they’re alone
  88. Anything Harry Potter
  89. The abridged version of Les Mis (so much easier to readdddd)
  90. Old fashion soda bottles
  91. Miniature pigs (I will have one someday!)
  92. Documentaries/ books about inspiring people
  93. Psych and Monk being on Amazon Video now
  94. Warm clothes fresh from the dryer
  95. Sunshiny days
  96. Watching lightning during a thunder storm (if it hasn’t already given me a migraine that is)
  97. Naps
  98. Christmas lights
  99. Finding a good song on the radio
  100. Jar tops that go clicky-clack

 

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Dad’s “secret stash”

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Bestower of nose kisses

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Flying pig pjs and kitty socks #thuglife

 

The Chronic Illness New Year

The start of a new year is great right? You watch the ball drop, raise a glass, make resolutions–all that good stuff. January first comes around each year and you feel a sense of a fresh start. You look back on the previous year and see how far you’ve come; you look forward into the new year that holds all sorts of possibilities. Great. But for those of us who deal with chronic, significant health issues the new year means something else as well.

It’s something we dread.

It starts not on January 1, but with the first major medical necessity of the new year.

For me, and my PI homies out there that is generally our first infusion shipment of the year.

You dial the specialty pharmacy number with a knot in your stomach, you try to sound normal as you go through all the normal shipment info, then the moment arrives– with trembling hand you hold the phone to your ear and wait for the bomb to drop. Your copay amount.

You see, the new year means that the deductible you met last year is all gone and you have a fresh pile of money you have to toss into the insurance pit before you’ll get decent coverage.

It also means that your insurance company can make all sorts of changes that come into effect with the new year–maybe they’ll move your infusion medication to a different tier on their covered medications meaning they cover less of it, maybe they’ll increase the cost of your medication, maybe they’ll make you switch to a whole different one because they no longer cover the one you’re on… The terrifying possibilities are nearly endless.

This past week the Chronic Illness New Year hit me and my family hard. I went to order my months supply of Gamunex-c and infusion supplies to be met with the wonderful surprise of my copay increasing from $250 (but actually zero because our deductible had been met with copay assistance from the wonderful folks at Gammagard before I was forced to switch) to $600.

For those of you who aren’t familiar with Ig infusions, this may seem like an impossible amount (and really it should be), but the sad fact is that this is a problem continually faced by those who need Ig infusions and their families.

Luckily most Ig companies provide copay assistance to those who use their product and need help paying for it (which is basically everybody). After my wonderful doc and I jumped through several hoops, it looks like I will be able to get copay assistance starting next month from my new buds at Gamunex. But even with assistance many families still have to shell out a considerable amount before the year’s deductible is met.

As I’m writing this I’m thinking I really, really wish that I didn’t have to know so much about health insurance already. But I’m also thinking despite the hoops, the bills, the stress, and all the wonders of the Chronic Illness New Year, I’m just so grateful to be able to have the Ig infusions. I’m so grateful that my immunodeficiency was able to be diagnosed and there is this treatment. And it does help. A lot.

So Happy Chronic Illness New Year! May the odds be ever in your favor…

How Can an Illness be Invisible?

“Invisible illness” is a term you see thrown about a lot these days, but have you ever wondered exactly what it means–how an illness can be “invisible?” Well if so, good. You’re in the right place, cuz I’m about to explain. Or try to at least.

See these two good-looking sisters? Pretend for a moment you don’t know which one is me–just by looking at the picture can you tell which sister has an immunodeficiency? Migraines? Anxiety?

No. You can’t. Let’s be honest–you can’t even tell which of us is older (me people! Me. The one with bad vision. Everyone always thinks she is older). That’s what an invisible illness is–a condition that can’t be identified by just looking; it’s the pain that no one sees, the panic that no one notices, the everyday struggle that goes unrecognized, the illness that goes unseen, unrealized, sometimes unbelieved–that is what is meant by “invisible.”

Really almost all chronic illnesses fall under this category because so little of what goes on with our bodies is visible to the naked eye. And yes, this is good because I think most people, sick or not, prefer not to stick out. But it’s also bad. Why?

Well let’s go back to me as an example. Except for my inability to smile normally for pictures, I look like a pretty average college student (I think so at least). So people who don’t know me, who say, see me in a morning class but not in an afternoon one, would assume I’m just skipping that second class. And that, in turn, would change the way they look at me. I know this from high school; most kids I had classes with the last couple years of high school thought I just skipped class all the time. So did some of the teachers. Because they couldn’t see what was wrong with me, and because at the time, I didn’t even know exactly what was wrong with me, they didn’t believe that a teenager could really be sick that much. Therefore I must just be a lazy, liar skipping class and then making up tales to cover my butt.

We humans have a hard time believing in what we cannot see. It’s silly, but it is definitely a thing. When applied to invisible illness, it causes people to say stuff like “but you don’t look sick,” in turn causing an increased co-morbidity of chronic illness and homicidal impulses (kidding). But hearing stuff like “but you don’t look sick” or “but you’re too young to have all these problems” does get old real fast. Not that I would like people to come up to me and say, “wow you look awful!” That’s not what I’m getting at here. What I’m getting at is that all people with invisible illnesses want is for you to believe them. Believe when they say they’re in pain, they’re in pain–even if you can’t see it. Believe when they say they’re tired, it’s more than just being a little sleepy. Believe them when they say they’d love to, but they’re not feeling up to it. Just believe and be understanding. Those two actions alone can significantly lift the burden of an invisible illness.

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.

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.

 

 

 

 

 

Just a Zebra Girl in a Muggle World

Today is an awesome day–it is the day of birth belonging to both J.K. Rowling and Harry Potter himself.ms-c1NBLK

I was first introduced to Harry Potter when I was eight years old by my grammy (thank you grammy). Since then–and you’re gunna think I’m totally insane, but oh well–I’ve read the first HP at least twenty times. That’s not an exaggeration. That’s real life.

I swear I’m not crazy though. When I was a kid and they were still coming out, I read the series at least twice a year–once for fun and once in preparation for the next book coming out. Since the last one came out when I was 12 I haven’t read them as often. But whenever my world is too much; whenever I am sick of being sick, tired of being tired or feel lonely and out of place; whenever I yearn to explore and escape–I go back to Harry Potter.

I’m grateful to my parents for teaching me this trick at a young age. They couldn’t have known then how valuable it would be for me–how books have brought me through when my body was stuck sick in bed or my mind was tired of being me. They taught me by example and patience to love reading and learning. (That being said they certainly aren’t perfect as neither of them has ever read any of the HP books. Smh.)

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I owe my love of reading to my parents (although obviously I have outstretched them when it comes to taste in books), but I attribute my love of writing to the authors I have loved and the worlds they have opened to me. Foremost of these is Joanne Rowling–the first time her words let me into Harry’s world I realized I wanted to be a writer. She, more than any other author, has taught me the value that the written word can have. She will never know exactly how much her words meant to a little, wide-eyed girl, to a sick and angry teenager, and to a young woman trying to find her place in this muggle world. But now you do.

We do not need magic to transform our world. We carry all of the power we need inside ourselves already.” 

-J.K. Rowling

 

 

 

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.