Tag Archive | life with a chronic disease

You know you have a sustained lack of appetite if…

  • you forget what hunger feels like
  • you feel this deep pain in your body and your first response is to stop eating; after three to five days pass, you realize that what you feel is actually hunger and the correct solution is to eat; except now your body can only process small amounts of food at a time
  • after such a realization, you remember that this entire sequence has happened at least once, and one time, you and your psychiatrist just started laughing at the ridiculousness that is the observation that a person forgot what feeling hungry meant
  • you are best friends with your GI doctor whose number one metric is not your blood pressure nor your lab work but your weight, fair and simple
  • the best part about breaking up with the boy is that you no longer have to deal with his annoying habit of forgetting to eat lunch, which had meant that during several dates you had to sit in a cafe and watch him eat lunch while trying not to have a panic attack or throw stuff at him
  • when you were dating the boy, you let him take you out to eat a grand total of ONE time (in a two month period)… and you almost bailed from the ice cream shop because it was so overwhelming
  • your GI doctor found you formula to supplement your diet when you are in so much pain that thinking about food is off limits; it’s marketed for toddlers who suffer from “failure to thrive” (and you think it is a brilliant idea)
  • your GI doctor loves your teenage sister because when you lived at home, her favorite thing to do was knock on your door and ask you if you ate recently
  • your local friends know that you’re going through a hard time so they invite you over for dinner or take you out to eat; they let you ramble while they’re eating but they tell waiters to go away because it still looks like you haven’t eaten anything and part of being your friend means making sure you’re properly nourished
  • you go to church potlucks but half the time you just look at the food and don’t take anything
  • if you eat dinner at someone’s house and actually like the food, your friends hand you leftovers because it’s such a rare occurance
  • people ask you what your favorite dish is and you haven’t the slightest clue
  • eating is a chore like brushing your teeth; you’re supposed to do it on a regular basis, but technically it’s still optional
  • your doctors have categorized ice cream as a healthy food because it has calories and you need them
  • you make dinner but by the time it’s cooked it’s the most disgusting thing you’ve ever seen and there’s no way you’re even eating it
  • you look at the clock and realize that it’s bedtime and you haven’t even thought about dinner
  • sometimes you start to eat dinner and after an hour and a half realize that you’re never going to eat the food in front of you and throw it away; then you realize that while you’ve accomplished something (throwing away the food that you were supposed to eat), you still haven’t accomplished the original thing you set out to do which was to eat dinner
  • when people ask you what kind of cake or food you’re going to serve at your wedding, you tell them that (a) you’re not getting married yet and (b) you would prefer to skip the food altogether
  • when you tell your GI doctor that you have a new boyfriend and that means you need his help because food comes up a LOT when you are dating, he thinks about it and says that while usually he would encourage you to just avoid encounters with food, he could see how figuring out how to deal with it might make social interactions easier so we can brainstorm. He also recommends that I give the boy time to adjust (aka this problem will not just go away.)
  • people feel bad when they learn that you have food sensitivities and can’t eat food with gluten or dairy in them because now nothing they’re serving for the party is friendly; no problem, you think, it wasn’t like you were about to eat anything anyways; plus, eating is a need, not a want
  • Thanksgiving and Christmas are holidays where you listen to older folks tell you their life stories and when you volunteer to do the dishes (not holidays where you cook or eat or otherwise think about food)
  • people ask you what you like to order at a coffee shop and after the longest time you answer: water
  • when people invite you to happy hour, you kindly explain to them that you can’t drink alcohol while in your mind you know that any activity that lasts for an hour and involves food is the opposite of happy and why would you want to spend your free time doing that anyway?
  • people ask you what restaurants are good in the area and you have no idea but can point them to the good gas station, the local library, the best shopping malls, the local bookstore, and even the ideal backdrop for photos
  • the bottom line is that you think about food as little as possible and only as a problem that has to be tackled

So, yeah, I suffer what medical professionals properly term as “anorexia”, that is, a sustained lack of appetite.* My body does not digest food properly (yay! functional GI disorder). Therefore, food often leads to more pain, which leads to an inclination to avoid food altogether. Eating is the opposite of relaxing and is simply something I do only because I have to. I’ve been dealing with this since 2007 at least.

Dr. Leo and I have put our heads together and decided that we can be a little bit more proactive about managing the situation. I’m already on an antispasm medication (dicyclomine) that’s specific to the GI tract. That’s helped a little bit. The formula has been a lifesaver for when I’m really busy or when I’m emotionally exhausted but still need to eat. But like the rest of my disease, there are seasons. Some months I struggle with one thing more than another. And food is currently a big issue for me. I can’t take more medication because I weigh so little to begin with, and my body doesn’t digest medication very well either.

Dr. Leo has given a big thumbs up to all my local friends who have been having me over for dinner and dropping off snacks and just generally making sure that I’m doing okay and that I’m still eating. We’ve resigned ourselves to the fact that sometimes that means that I’m using the formula, which isn’t ideal but will work for now. And he’s also enrolled me in a psychotherapy program specifically targeted to anxiety related to eating and digestion. It won’t make the underlying problem go away, but perhaps there are some techniques that I could learn that would help in those moments when it all gets overwhelming and I hit fight-or-flight mode.

They say what doesn’t kill you makes you stronger. I’m still not sure that I believe them. But I do want to gain a semblance of control over my life again. And not panicking because there’s an activity involving food would be a nice change. Dr. Leo calls it better quality of life. And as long as someone else is helping me fight, I can see myself taking this on.

With hope for what the future can bring,
Abigail Cashelle

*In medical parlance, “anorexia” refers to a sustained lack of appetite. A specific type of anorexia known as “anorexia nervosa” is commonly abbreviated as “anorexia” by lay persons. Anorexia nervosa specifically describes an eating disorder characterized by excessive weight loss and unusual concern for body image.

CPBC: The Fault in Our Stars

Confession: I’m obsessed with The Fault in Our Stars by John Green. After I watched the movie, I listened to the audiobook. And then I bought the book. Now I have the movie. And yeah, I didn’t just listen, buy, and possess. I may have entire portions of this story memorized. (Just nowhere near as obsessed as Hazel is with An Imperial Afflication. So I suppose it could be a lot worse.)

Anyways, I put together a treasury of #tfios interpretations in art form. I have a really hard time with visuals. (Explains why I found audiobooks such a resource.) But it’s cool to see how other people have interpreted this story.

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But there are definitely a few things that have really helped me. First, the idea that persons who are chronically ill can love and have as deep psychological needs as other “normal” people. Hazel has a long soliloquy about Abraham Maslow’s hierarchy of needs and how according to his hierarchy, people are struggling to survive cannot think about art or the meaning of life, etc. But it’s simply not true. In fact, it seems that the fight for life makes those things even more important.

Second, the priest comforts Gus’ friends and family at his funeral by saying that in heaven, Gus is made whole, a conclusion that Hazel scoffs at. At first, I wasn’t sure what Green was getting at. Isn’t part of the next life about being freed from the body of this humiliation??

I was already starting to get [frustrated] at the minister when he said, “In heaven, Augustus will finally be healed and whole,” implying that he had been less whole than other people due to his leglessness, and I kind of could not repress my sigh of disgust.”

And I think that she does have a point here. Somehow, being sick makes you a less valid human in the eyes of some and it’s simply not true. This matches the first point.

Thirdly, the way in which John Green has Hazel defend Monica and her inability to deal with Isaac’s illness is unique and inherently helpful, particularly in light of the first two points. Even though people should treat those with chronic or terminal illnesses like real human beings, a lot times they don’t simply because they can’t. While that may be a weakness or feel unfair, if we are to cut ourselves slack and realize that we can’t be and do everything that we want to, then we also owe it to the rest of mankind to allow them to be true to their own capacity. Because nothing is worse than people pretending like they can do or be something that they really can’t (or don’t.)

Fourthly, I like the way Green deals with “encouragements”. Hazel has a really hard time with a lot of the standard lexicon of words to encourage the sick, but when Gus reveals the extent of his illness, she winds up giving him the whole litany of them. Why? Because the human understanding is often inadequate of dealing with the harsh reality of illness & death.

“You get to battle cancer,” I said. “That is your battle. And you’ll keep fighting,” I told him. I hated it when people tried to build me up to prepare for battle, but I did it to him, anyway. “You’ll… you’ll… live your best life today. This is your war now.” I despised myself for the cheesy sentiment, but what else did I have?

Even with the intimate and personal experience of illness, it can be difficult to relate or to know what to say. I love that Green has Hazel rely on words from support group: “Living our best life today” because it shows that support group really did help her through the most difficult times even though she would be the last one to ever admit it. And in the end, this reinforces point #3. Facing illness is really hard, and sometimes we do want to run away even if we know we shouldn’t.

And lastly, grief and illness doesn’t really change who you are. I love the way in which Green deals with this throughout the book. He talks about Gus’ handsomeness and thoughtfulness, which his sisters admires. He describes Isaac’s desperate need for love and Gus’ craving for the status of hero. He shows van Houten’s miserable, selfish ways before and after his daughter’s fight with cancer.

I was insufferable long before we lost her. Grief does not change you, Hazel. It reveals you.

I love this concept because I think we make illness too much a focus of our existence or our life story. But really, as Gus points out, it’s important to focus on you and not your “cancer” story (or whatever). Because who you are is only made more manifest by trouble and trials. Not the other way around.

Abigail

P.S. Yes, I’m also reading This Light Won’t Go Out: The Life and Words of Esther Earl, a book based on the writings of a young woman who inspired and encouraged John Green and to whom his book is dedicated.

the tables have turned (in a good way)

Now that I’m on faculty at a university (can we just pause and reflect on how amazing that is??), I have a student in my class with a significant chronic illness. She came up to me with some paperwork from the Disability Office asking for some specific accommodations. Now accommodations are annoying to teachers, and I get why. You have some great plan and vision for your class, and all of a sudden some random person comes up to you and says, Sorry. Mandatory change of plans.

But I looked at her sheet and listened to what she had to say and realized that she wasn’t asking for a whole lot. In fact, she was asking for exactly what I asked the ravenous lion for on my very first encounter. She asked for a flexible attendance policy. Attendance is mandatory in my class. You can miss up to 3 classes penalty-free, and attendance counts as 10% of the grade. That’s bad news if you have an unpredictable chronic illness.

What made me really happy was that I was able to sit down with the student and talk through some of the logistics with her. I told her that I was more than happy to give her the full 10% as long as she realized that she was fully responsible for all the content in the class. If she missed a lot of classes, it would be a huge challenge to pass the class. (So it doesn’t really give her much of an advantage.)

But mostly we just talked about life with a chronic illness. I asked her if there was anything she wanted me to know about her illness, anything that I could do to make things easier or intervene in the case of an emergency. I told her that I myself have a chronic illness and am familiar with how scary that can seem to other people. And that secret made her really happy.

She said that most people are freaked out when they find out that she’s not healthy and immediately want her to vanish. And so she spends a lot of time thinking about accidentally making other people feel uncomfortable and how she can avoid that. She was really happy to meet a teacher who felt comfortable talking to her about it and who was immediately on her side. She said that she felt so much safer in the class.

I’m so happy that she found me approachable and understanding. I’m still really nervous about my illness and my lack of a Ph.D. in the department and haven’t told anyone at this university about my illness besides her. I know exactly how she feels because I live in that exact same world. But I’m glad that I could make her feel a little more at home in school. And it gives me a comrade too. Someone else who knows that I’m also struggling some and that sometimes, things are not what they appear.

Abigail

the rest of that ER story

I realize that I left you hanging with that last post. I guess that’s what happens when you write blog posts at 4 am. Short Story: I’m fine. Long story:…

I haven’t been sleeping very well because I’ve been a lot of pain. (I guess so much for telling the doctors that I’d been in much less pain.) Anyhow, I woke up because I really couldn’t sleep, and I was in a really bad mood. I couldn’t decide if I was just hungry or actually in pain, so I tried eating some stuff which made things worse. In debating over whether or not to go to the ER, things got WAY worse. So I wrote a note to the family, put it on my bedroom door, and grabbed some stuff & Molly and headed to the ER. Fortunately, I’d done my research before and figured out which ER made the most sense for me. (There are three ERs that are basically the same distance from my house.) That was about 3:15 am.

The whole trip was kind of surreal. I was SO exhausted that I wasn’t thinking clearly most of the time, but I was feeling bad enough to know that I couldn’t leave. I spent at least two hours in the waiting room with a young couple and their 14 month old daughter. She was really cute, and we managed to lean on each other a little bit emotionally, so that was nice. Both the dad and I had a lot of abdominal pain but were trying to be really saintly about it. (Not sure how much we succeeded on that point.) So I was grateful for the company, and Molly made a new friend.

I would have to say that it was the one time in my life that I was jealous of someone with appendicitis and was heading to emergency surgery. It sounds bad, but I saw the dad in the hallway right when he was getting diagnosed (and then word travels around the ER pretty easily since there aren’t exactly real walls.) I felt bad for him and for what they were going through and was praying for them and everything. I was just jealous of the fact that his middle-of-the-night ER trip was totally justified, that he had an answer, and that he was given a solution. Unfortunately, I had none of those.

They were able to confirm that I do not have appendicitis nor an infection nor anything else life threatening. It wasn’t even immediately obvious if it justified an ER visit anyways. It could have been an entire waste of $700 and a whole bunch of “sleep”. But talking it over with Alana, I realized that there were some serious red flags. Like I measured my heartrate with my phone app and it was 136 beats/minute. (My resting heart rate is generally under 70 bpm.) I was so scared and so tense because of the pain that I was having a hard time breathing. So perhaps even if the ER doctor was confused why I went in, I think it’s a good thing that I got things checked out and that I got a few things ruled out right away. Otherwise, this girl who has to take care of herself all the time would have maxed out capacity-wise.

So yeah, I didn’t get back to my house until 9 am. And I taught two classes and tutored for an hour all after that.

I’m actually still up and down as far as pain is concerned. Dr. Leo has me on some formula that’s helped some when eating is just a nightmare. And I’ve been trying to rest a lot even when I’m not tired because I know my body is in mega temper tantrum mode still. I’ve been listening to this song (above) over and over again when I can’t fall asleep at night. I reminds me of great childhood memories, and it helps with the not freaking out & actually breathing. And I try to remember that my body tends to throw fits when it’s thrown new things. So I’m trying to take it all in stride.

Just another day in the life,
Abigail