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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.

Scars

I’m part of the Harry Potter generation–I grew up with Harry, Ron and Hermione–so when I think of scars, I think of this quote from Harry Potter and the Philosopher’s Stone:

“Yes,” said Dumbledore. “He’ll have that scar forever.”

“Couldn’t you do something about it, Dumbledore?”

“Even if I could, I wouldn’t. Scars can come in handy. I have one myself above my left knee that is a perfect map of the London Underground.”

As it happens, I also have a scar on my left knee that is a perfect
map of the London Underground–providing that the London Underground is a single, straight tunnel. I got it from IT Band surgery I had at the end of my last season of bball (not knowing it would be my last season of course).IMG_0260

I also have scars on the front of both of my knees and my hip bones from years of court burns. I have a scar on my right leg from slipping off my bike as a kid. I have faint scars on my upper arms from girls nails scratching me during games. Now I have four teeny scars on my abdomen from gallbladder surgery. All together it’s a pretty decent collection I’ve got going.

I love each and every one of my scars. Each one tells a story of pain. Each one is a daily reminder that everything passes eventually–that wounds heal, tears dry, and the sun never fails to chase away the night. Each one is proof that life is worth living, despite the pain. Each one is like a little, shining kiss from life–proof of what you’ve passed through and overcome.

That’s why I’d have to agree with Dumbledore–scars are useful, even if they are not, like mine and Dumbledore’s, a perfect map of the London Underground.

Of course we all have scars that are not visible–hidden holes inside us from something missing. They’re a little harder to love. They hurt longer, heal messier. But maybe that’s why we should love them all the more, because they’re evidence of something worth missing.

My Brain’s Got a People Allergy

At the end of winter break this year my dad approached me in his classic-dad manner, “Miranda.” He said. “I’ve got an assignment for you this semester.”

I couldn’t tell yet if he was joking or not (he is about 90% of the time).

“Your assignment is to make a friend a week and report back to me.”

Yeah, no, I still couldn’t tell. He had to be joking though, right?

Every week this past semester when we’d Skype the parents my dad would walk onto screen, “Miranda! Micaela! Friend report.”

Well if it wasn’t a joke to him, it sure was to us. The idea that either of us, but especially I, could make a friend every week–it’s just hilariously absurd. After all, a Myers-Briggs personality test once told me I’m 98% introverted. It also said that no one is 100% introverted, so literally only 1% of the population is more introverted than I am. But that’s only part of it.

Another reason I’m no social butterfly, nor even a social caterpillar, is my anxiety disorder. Ugh I hate saying it. I hate the word anxiety. I hate admitting to that heart racing, gut-clenching parasite. I hate giving it a name. I hate it.

Anxiety feels like something I should be able to control, so I’m embarrassed that I can’t. In my head I know that I should be no more ashamed to have anxiety than to have PI or migraines or an incredibly lazy stomach. In my head I know that my body’s overreaction to normal life things, especially social situations, is as real and uncontrollable as its anaphylactic reaction when I accidentally eat certain types of nuts. But also in my head is a lifetime of exposure to the stigma of mental illness. Also in my head I see the character on tv sweating and popping Xanax like they’re Tic Tacs; I see the person in the movie who is too afraid to leave their house; I see the cartoon character who always carries around a paper bag to hyperventilate in. Isn’t it funny? they seem to say to me. Aren’t people like this silly? After all it’s all in their head.

That’s why when I meet with my professors at the beginning of the semester I go over my immunodeficiency, sometimes my migraines and stomach problems–I never say a word about my anxiety. Though it’s the very thing making my heart pound while sitting and having a simple conversation, I hide it away. I don’t say anything about it when I meet with them. I don’t say anything when I have to give a presentation and I know I will get a lower grade because the ultimate trigger for my anxiety is public speaking. I don’t say anything when my professor emails me reminding me that there’s a participation grade.

But that stigma is also why I’m sharing this now, even though it hurts my pride considerably–even though part of me hopes that no one will read this. The other part of me hopes everyone will read this, because I may be embarrassed of my anxiety, but I shouldn’t be. No one should be. It sucks to have to be the one to write “anxious mess” across my forehead in doing so, but somebody’s got to say it.

So my brain’s got a bit of a people/life allergy. What’s there to be embarrassed about in that? 😉

 

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.

 

 

Why I Disappeared for Two Years–A Gastroparesis Tale

July 2014:

“She’s lost over twenty pounds since she was here in May.”

Worry in my doctors eyes.

“It could be cancer, it could be an autoimmune condition–we’ll know more when we get these tests back.”

Fear in my mother’s.

“I don’t think you’re going to be able to go back to school this semester.”

Tears of frustration in mine.

1 Month Previous:

Our health insurance provider did what they do best, that is screw up. The date by which the approval for my infusions expired came and went, and they hadn’t processed the renewal. Because of this I had to go about three weeks without an infusion. I caught a stomach bug–bacterial or viral we don’t know–but it was the worst I’ve ever had.

Once the worst (spewing vomit) was over I recovered pretty normally for a couple of days. Then I just stopped. I was weak. I was nauseous all the time. Eating was agony–hunger pangs were nothing in comparison. Being up made everything worse and I passed out a couple times. I kept expecting it to pass, but it just kept getting worse.

October 2014:

“Miss Macfarlane are you a diabetic?”

Uh no, no I am not.

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“The test showed your stomach is emptying too slowly.”

Gastroparesis? What the heck is that?

“It’s common in diabetics because high blood sugar damages the nerves controlling the stomach.”

Ok, but we’ve been over this. I’m not a diabetic.

“Sometimes similar nerve damage can occur from a GI infection.”

Hmmm you mean like the stomach bug from hell I had a couple months ago? That sounds about right.

January-February 2015:

My local GI doc was at a loss. The meds he’d tried me on had helped very little. I was still losing weight, I still couldn’t handle solid food, I was still miserable and sick, sick, sick. He decided to refer me to VCU.

My first appointment at VCU I met with the head of the GI department. He referred me to endocrinology and immunology at VCU as well. I had a consultation with a nutritionist–she was impressed with the shake my mom and I had come up with and didn’t have much to add. (For my gastroparesis shake recipe click here)

The GI said that if I was any other patient, he would put a J-tube (feeding tube that delivers stuff straight to the small intestine) in me right away, but because of my immunodeficiency he was afraid to–I’d be at high risk for a serious infection from it. We agreed that if things hadn’t improved in a month or so when I came back, we would try it anyways. I was desperate to stop losing weight–the more weight I lost, the sicker I became.

By the time my follow up came around I was doing a little better. The scale showed that I had managed to gain a pound. I felt like I had scaled Mt. Everest. It was the first time in nine months that I had not lost weight.

I met with a Nurse Practitioner in the GI department. She tweaked my meds, and was the first genius to think of giving me prescription anti-nausea pills. The changes she made worked. I started being able to eat solid food again in March 2015.

…..

It took me a few months to gain back about half the weight I had lost, which put me at a good, comfortable, healthy weight. The rest of it I still have not gained back as it was mostly muscle I had gained playing ball my freshman year at SVU.

Even once I had achieved my goal weight and was back on a fairly normal diet, my body didn’t bounce back to its former self like I’d hoped it would. It took me another year to get strong enough to go back to school. Even now, after two years with good control of the gastroparesis, I struggle–my body just isn’t the same. It probably won’t ever be, but that’s ok.

I’m learning it’s ok.