Skip to content

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.

ms-EncMhf

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.

ms-F7fOC7

 

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!

    ms-4VQmSC

    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.

ms-9aFUPM

 

 

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!

IMG_0303

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.

IMG_0292

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:

IMG_0290

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:

img_0294.jpg

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.