How do you grieve an organ?

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In June of last year, unbeknownst to me, my right kidney began a rapidly accelerated journey to the end of its life. What was supposed to be a simple kidney stone removal (get stent! get anesthesia! blast the stones with a laser like this is a video game from the early 2000s! get stent again! live kidney stone free!), instead heated the inside of my right kidney so significantly, that as of last July, I’ve been living with one functioning kidney. Notably, in October, I realized that my creatinine was double what it normally was, and asked if this was normal 4 months out from surgery. I was told that no, it was not normal (despite this not having been picked up by the provider ordering the lab), and was sent to nephrology where I finally was able to get an appointment two months later. We discussed kidney biopsies and lupus-induced nephritis, ironically regarding my left kidney, which, we would soon find out, was completely fine.

In the interim, I decided I had a right to medical care that I felt addressed my needs (wild, I know), and decided to get a second opinion. Over the last month of my medicine rotation, it felt like every other day was a different, horrible update. What began as a plan to remove the stones from my left kidney quickly turned to a discovery that my right kidney was swollen (ultrasound), and then then that it was atrophied (CT scan), and then that it had basically no function at all (renal perfusion scan). I sneaked away from rounds to talk to my urologist and discuss the possibility of completing my rotations with a nephrostomy tube, or a stent, or both. Each time, I had about two seconds before I had to take a deep breath, try to not have a meltdown, and return to my team to present on my next patient.

In the face of a health crisis while trying to finish school on time, I did what I always do — I rescheduled my exams, kept my composure, overshared in professional settings and made it work. I spent my week-long vacation having a stent (not a nephrostomy tube, thanks to my urologist) placed on my right kidney, and then having a second surgery to remove the stones from my left kidney (which included fun bonuses such as urinating out of my back for a full day). I got home, tried to re-create a routine from an absolute absence of one and held my breath for a repeat renal scan a month later to see if my kidney had managed to recover. I had been at the edge of total kidney failure for more than half a year — one handstand and my left sided stones could have obstructed and laded me in the hospital.

A week ago, I laid within the nuclear medicine scanner waiting to have radioactive dye shot into my veins. This scan is a true test of ones ability to be present. On a screen to my right, I watched my left kidney light up like those annoyingly blue headlights and over the course of an hour I laid perfectly still and watched it drain to my bladder. My right kidney didn’t have so much as a lightning bug’s worth of a flicker. At my appointment, my urologist did not need to “break the news” — my kidney was officially dead, and wasn’t getting off life support. We were going to pull the plug (aka stent) in a week, and let it be.

How do I grieve an organ? As I lay in the scanner coming to terms with living a single kidney existence, I, in an effort to combat dissociation, tried to connect with my physical form. I noted that the left side of my body seemed to have a stronger gravitational pull than the right — I felt more grounded, more settled. All of my complex surgeries and removed or non-functional parts of organs have always been on the right. I wondered if this gravity was less so a physical sensation and moreso an emotional manifestation of a violation of trust. How do I feel knowing that one of my organs is slowly atrophying inside of me? If we are leaving the damaged piece inside of me, how can I be well?

Truthfully, I am primarily relieved. I won’t need to have a complicated experimental surgery to try to save a kidney that barely functioned. I didn’t have to turn my life upside down to make it work. This reaction may be difficult to understand, and while I certainly wasn’t happy that I have lost a kidney through no fault of my own, I moreso was looking forward to a phase of my life where I would no longer have to be so adaptable and flexible. Medical school forces you to constantly adapt to new situations, new people, new evaluation systems. Throwing a health crisis into the mix really stretched my routine-loving brain to new lengths. The people around me, especially those who are able bodied, were seemingly much more upset about my kidney-less existence than I was. I was looking forward to living how I enjoy living, while some of my loved ones jumped to facilitating a kidney transplant.

I’ve decided that I’m going to approach this experience by funneling my frustration into highlighting the absurdity of it all. Despite my immense privilege within the medical system, I was still harmed due to an error. I walk through the hospital where my kidney had its last hours on a daily basis. I was the only one who noticed — what would have happened if I hadn’t understood what my creatinine should have been? Or convinced myself to get a second opinion? Patient self-advocacy is so important, but there are times where it should not be necessary. My intent is to grieve my kidney by celebrating its life, while doing nothing but channeling kindness toward it. I intend to throw a funeral in its honor (with only bean-shaped foods of course) and continue succeeding in keeping myself afloat despite conditions that threaten the possibility of drowning.

On Patient vs Doctor

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What does it feel like to want to be part of the system you question? I listened to a Hidden Brain episode in the shower last night (the optimum time for podcast listening), where they detailed the tragic trajectory of the Ford Pinto. The focus of the episode was on hindsight bias, which, while interesting, didn’t capture the brunt of my attention. Instead, I felt most drawn to the story of their primary interviewee — a former Ford employee who had joined the company with a passion for reform, only to play a role in the continued existence of the Ford Pinto, a dangerous vehicle, on the market.

It looks like the last time I wrote a blog post was the day after I got into the medical school I currently attend. It’s been an interesting 8 or so weeks since I started. In many ways, I dedicated myself to medicine not only because I am passionate about helping and connecting to others and enjoy the problem-solving model of learning — do I sound like I’ve been through multiple med school interviews? — but also because I am passionate about contributing to a movement that focuses whole heartedly on patient well-being and less on the financial bottom line. Like that former Ford employee, I came in with a passion for reform, wanting to improve on the care I received. Over the past couple of months, however, I’ve reckoned with my identity, trying to find the line between being a patient and being a medical student. I’ve spent the last four years using my experiences to enhance the empathy of medicine while attempting to help those like me who have not yet found their voices feel less alone. Do I stop now?

During our patient care class, we discussed possible causes for abdominal pain. I rattled dozens off as though I was reciting the digits of pi, fueled by years of googling possible etiologies behind my own pain. When my professor didn’t know the risk factors for kidney stones, I felt both emotionally and intellectually inspired to list these as well. Do I contribute that I was only aware of them because I have two kidney stones? Do I mention how much they hurt? How I used to keep some oxycodone around so I could get to the emergency room in an Uber when one of them hit, so as to not pay for an ambulance? How much is too much? When we mention Adalimumab, do I say how scared I was when I had to do my first four injections? Is it my responsibility as a patient advocate passionate about reform to volunteer my illness experiences in an attempt to encourage my classmates to think about the lived experiences behind the drug names they’re memorizing or the symptoms we’re discussing? When we breeze over the side effects for prednisone, do I talk about how bad they really are? How it makes you irritable and your face puffy and makes you feel like you could eat your lunch three times over? Where do I draw the line?

I understand that when I begin to actually interact with patients, the times that I choose to share my own experiences lying in a hospital bed will likely be minimized. My experiences will inform my care, I’m sure. I won’t ever tell them to get a good night’s sleep — because who can actually do that in a hospital — but I will refrain from detailing my own illness narrative. The spotlight is on them and their experiences, and the etiology behind my potentially increased empathic capacity from my own story should not often be shared. However, when I was applying to medical school, an advisor told me that perhaps schools would admit me in an attempt to contribute to the empathy of their students toward the patient. Is that my job now? To make up for the lack of lived experiences in our curriculum by sharing my own? Or can I simply recede into my flashcards and my PowerPoint slides, not contributing to the conversation in the way that I feel like I’ve been programmed to.

At some point, I’m sure I’ll be doing Anki from a hospital bed. Is that the time? In not sharing, am I potentially increasing the probability that a surgical resident will have an insensitive comment for an 18 year old in a hospital bed, like one had for me? Am I contributing to an industry that fuels trauma for so many? At what point do I stop being an advocate and I start being a medical student? And what’s the best way to be both?

Happiness Osmosis

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I got into one of my top choices for medical school last night, and it’s taking everything in me to try to be genuinely happy about it. I’m pleased, yes. But am I happy? Not really. If I had to personify my neurons, it feels like the majority of them are thinking through all the possible worst-case scenarios that can come from this objectively good piece of news. What if it was a prank call? What if I get sick? There’s one, stray neuron that’s thinking logically, trying to convince the rest to ease up. But it’s being drowned out by the rainstorm of horrible ways things could go.

Part of this could probably be chalked up to the rollercoaster of anxiety and guilt I had this weekend. But most of it is probably due to the fact that, for many years, thinking through the worst-case scenarios was the best coping mechanism I had. I remember feeling some sense of hope when I first started getting sick — maybe this appointment will go well. Maybe I’ll be able to stay up past 6 PM. But as soon as I realized that it was easier to be pleased than consistently disappointed, that outlook changed. Between flaring with a chronic illness, having parents with health issues and going to a high school where stress and hard classes were mainstream, it was easier to think that things would go badly than to assume they would go well. Sure, I might not be the image of positivity, but at least all my hope wouldn’t come crashing down on me when things didn’t turn out the way I assumed they would.

This lack of strong, positive emotion is not all bad, though. I’m also having a really hard time being pissed off or angry. I get frustrated, sure, but I never get to the point where I feel like I’m going to explode. I watch shows with depictions of rape or abuse and I feel frustrated by the injustice, but never angry about it. The news makes my stomach turn, but it only makes me sad or disgusted. I never feel like I could punch out a hole in the wall or attack my pillows in fits of rage. My self-psychoanalysis has told me that anger is a direct response to a loss of happiness. If I’m constantly thinking through worst-case scenarios, how can I get angry when things don’t work out? I might be sad, sure, but I’m not surprised enough to ever feel my blood boiling.

I’ve been working on trying to take in some of the happiness around me for the last year. It often seems like when good things happen to me, there are two reactions: either folks are happy for me, or they tell me they assumed things would work out this way. They tell me I should celebrate the good news, and I’ve been trying to convince myself to do so. It’s incredibly difficult for me to take on those perspectives at the moment, but with every positive piece of news, I try to write down all the reasons why I should be able to feel some sort of emotional rush from it. I fake it until I can feel it, I build stack logical arguments against those in favor of the worst-case scenarios I’ve developed, I make lists of the things that make me feel at peace. I psychoanalyze every emotion I have, trying to determine what exactly I’m feeling and whether that feeling is happiness. Usually, all I can hope for is emotional relief.

Eventually, I hope to be able to feel genuine happiness. My pessimism (or realism, depending on how you look at it), doesn’t extend that far. In the meantime, I hope that those around me can be patient with me. Sure, I might not look overjoyed, but I promise I’m trying to be. I might not be quite as loud or excited as I should be. But I’m working on it. For now, though, I’ll keep focusing on the rationale for positive emotion, and eventually steward myself on the path of feeling it.

A Reflection (and PSA) on Coping

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During precisely the semester where I needed my health to behave, it decided to throw me for a loop. While I was vigilantly aware of any possible gastrointestinal symptoms, my immune system was failing to fight an infection — an infection that would later turn into an abscess, an infection that would take me to the ER to spend 8 hours waiting for 2 ultrasounds and an aspiration, and an infection that would eventually lead me to be placed on 2 weeks of Clindamycin, an antibiotic notorious for being harsh on the digestive system.

As with everything dealing with chronic illness, experiences related to health delve deeper than just physiology. While your physical form is simply sitting in an emergency room bed, the presence of your emotional form is not quite as obvious. When physicians shadow over your physical form, your emotional form may be reminded of specialists cycling in and out of the room considering emergency surgery. While your physical form is transported to radiology, your emotional form is reminded of dizzily taking the same path after being given opioids for the pain. While your physical form accepts 1 mg of Dilaudid before the aspiration, your emotional form remembers being given 2 mg after surgery and forgetting to breathe as a result.

As a result of remembering, your emotional form begins to cope. It makes jokes with the nurses. It worries about your loved ones sitting by your bedside. It picks up your laptop and starts writing that paper you CTRL+S’ed when you decided to drive to the hospital.

Of course, when you’re finally discharged, the coping doesn’t end. When you get home, your emotional form puts your physical form to sleep. When you wake up the next morning, you plead with your emotional form to go easy on itself — it’s had a long weekend. It has a long week ahead. Your emotional form complies… kind of. It pushes the exhaustion behind, it keeps going and only succumbs when your physical form pleads with it to stop. When you take two exams that week, your emotional form fails to pull itself together, dragged down by the lethargy inflicted by the antibiotics on your physical form.

Many nights of long sleeping later, your emotional form starts pulling itself together. 11 days later, the antibiotics take their toll on your physical form, your emotional form begins to lose itself again. The abdominal pain inflicted on your physical form reminds your emotional form of nights spent crunched up into a ball in your freshman year dorm.

As a result, the coping resurfaces once more. You ignore your physical form — you go to the gym, you make dinner for your friends, you struggle to find the excuse to give your physical form a break. When the weekdays come, as you walk from your checkup in the hospital, you take acetaminophen to quiet your physical form — your emotional form must continue to function. There is no alternative. When you go to class, you ignore the abdominal pain. Practically speaking, you are only your emotional self. Your emotional self feeds into its Hermione Granger complex and distracts itself with the laws of circuits and electricity. The next morning, you try to remind yourself of your physical self and go to the gym, only for exercise to serve as a coping mechanism so your emotional form can conquer the uncertainty of your physical form. Your emotional form continues to exactly what it did before your physical form reminded your emotional form of its presence. It’s not that you, the whole you, can’t miss class, or shouldn’t exercise. It’s that your emotional form can’t miss class or a workout. Your physical form can (and probably should), but your emotional form can’t — it’s coping.

All this to say that when assessing the ability of individuals with a chronic illness, it is mistaken to think of them as a whole. Just because I’m at your party, or in class, or at the gym does not mean I’m not in pain. Sure, it probably means I’m not in absolutely debilitating pain — if I were I wouldn’t be able to crawl out of bed. But it doesn’t mean everything is “fine,” it just means I’m coping. Behind the veil of a fully functioning person, your abdomen may feel like it’s being stabbed. Behind the veil of a fully functioning person, your physical form is absolutely exhausted. Your emotional form is fully functioning, but your physical form is not. As human specimens functioning within society, we are privy to a tendency to make assumptions. Often, when assigning these assumptions to individuals with chronic illnesses, doing so is ableist. Those with chronic illnesses are unlikely to be forwardly vulnerable about their physical form — they can’t, they’re coping. Instead, it may be valuable to create a safe space for these individuals — one which encourages them to mend the divide between their physical form and emotional form. Those around you who are in pain are likely to thank you.

A Personal Kind of Physical Therapy

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During the entirety of 2016, I didn’t pick up anything that was heavier than a kettle. How could I? Over the course of that year, I had three (and a half) surgeries, anemia and a severe case of shingles. I was never particularly physically fit to begin with, but my body could carry me to where I needed to go, and I was comfortable moving it in any way I saw fit. 

After that year, however, my body — and my relationship with it — had changed completely. I was covered in scars that I had never anticipated having, and any kind of physical capacity I had disappeared. My weight had yo-yo-ed from month to month, and I had spent two months wearing high waisted skirts almost exclusively because of my ostomy. Granted, I was never offered any physical therapy regardless of the fact that I hadn’t truly used my core in an entire year.

Concurrently, I had begun to see my body as something foreign to myself. It was a disgruntled child that only caused me problems. One I needed to feed, clothe, and take to the doctor. It tired me out, it held me back, and it made me spend way more time in bed than I would have wanted to. Slowly but surely, I began thinking of my body and my mind as two separate entities. My physical form was a vessel meant to trap my mind from attaining everything it wanted to. I couldn’t predict what it was going to do, and every time I thought I had it figured out, it spun entirely out of control. 

Predictably enough, this dissociation, combined with my lack of physical abilities led to some pretty negative thought patterns. I became overly critical of myself and how much I was eating. I had never thought about my body that much in my entire life, and all of a sudden all I could do was hate it. It’s much easier to hate something that you don’t see as part of who “you” are. 

By the time I moved to London in June of 2017, things hadn’t gotten much better. The negative thought patterns were not leaving me alone. I did find respite, however, in my commute. In the morning I took the bus to the hospital, but after the day was over, I walked for an hour and a half to get home along the River Thames. Let me be clear: there was no need to do this, I could have taken the same bus I took in the morning, but I loved the feeling of moving my body and having it take me from one point to the next. I didn’t have to rely on a train being on time. If I needed to go someplace, my body would take me. Slowly, I began walking everywhere — if the journey would take the same amount of time walking as it would on public transport, I would walk. I was totaling 20,000 steps daily, which is wild considering I spent most of my day working in a hospital. Suddenly, my body was effective and had a purpose. My abdominal strength still wasn’t great, but I could feel the soreness in my legs at the end of the day, showing me that they were getting stronger. 

When I returned to my university in January of this year, I missed the freedom that London gave me. I could walk to class, sure, but it didn’t feel quite so special as passing the Globe Theatre did on my way home. My body wasn’t sore anymore, and the negative thought patterns began to come back with a vengeance. By early March, I realized I had to do something about it, so I went to see a personal trainer at my University’s gym. She looked at how I moved and what my fitness level was like, and then took me into the gym and showed me the ropes. I am comfortable saying that that decision and her support saved me from my negative thought patterns spiraling completely out of control. Eventually, I moved from free weights to loving barbells, and for the first time ever, I’m consistently going to the gym three, four or five times a week. Not only am I strengthening my core, but I’m also helping to appreciate and reconnect with my body.

When you lift heavy weights, the position of every part of your body matters. Your toe, heel, and side of your foot must be firmly on the ground. You must brace your core. Your back needs to be flat to ensure you’re using your legs to lift. You must move slowly, feeling absolutely every muscle in your body work to become more powerful. When I lift weights, there is only my body to concentrate on. Sure, I usually have some sort of music on, but the world outside me disappears — it must, to make sure I’m lifting correctly. Day by day, the lifts get easier, and I can feel my body becoming more powerful. My posture has improved, and I feel endlessly more capable than I did before. The gym not only serves as a form of physical therapy, helping me regain the strength I lost but also as a psychological remedy to help me appreciate my body further while tuning out the world around me. After the gym, I can feel how sore my muscles are, but it only allows me to appreciate them further and how capable they are considering what I subjected them to. 

My negative thought patterns haven’t completely subsided, but moving my body while becoming more powerful has ultimately been the remedy I needed. Although I was never offered any support to help bring my body back to full working condition, I found my own way — which is perhaps even more empowering.

This Is How You Can Help Me

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Whether I’m in a full-on Crohn’s flare or getting some initial warning signs that I need to slow down, I usually end up alerting someone. “I actually can’t make it tonight, I’m not feeling great” or “Actually, I think I might just need to go to sleep early today” litter the blue boxes on my iMessage screen. One note before I continue: I HATE canceling plans for the sake of my disease. However, taking a break to care for myself means that I’m not sitting at dinner thinking about what’s going on inside my digestive system, and can instead enjoy your company more thoroughly later on.

Most of my most caring friends will usually ask what they can do to help when I alert them to my sub-par state. I’m notoriously bad at asking for help, that much is clear. Granted, what I actually need is not generally communicable via text message, so I’ve decided to delineate that here. I hope that this is helpful whether you’re someone with a chronic disease, or whether you’re someone who cares about someone with a chronic disease. 

This is how you can help me:

  1. Keep me company. Feeling like you need to slow down is incomparably boring. It involves a lot of lying in bed and sleeping or lying in bed trying to sleep. I probably won’t see as many people as I would if I was feeling 100%. Therefore, one of the best things you can do is keep me company in a low-energy way. Sit with me and watch a TV show. Hang around my house with me and motivate me to do my homework.
  2. Understand. I’ve had a number of friends who demonstrate a significant degree of disappointment when I can’t do something I had agreed to. I would be disappointed too if someone canceled plans I was looking forward to. Please, please, please try to keep the majority of your disappointment to yourself, though. It’s helpful to know that you want to spend time with me. However, please know that I don’t want to cancel plans, and knowing the degree to which I’ve upset you makes me feel like a letdown.
  3. Communicate sympathy, not pity. Communicating pity means telling me how bad you feel about how sick I feel. Communicating sympathy means telling me how bad you feel about how sick I feel, and then reminding me that you care about me, that you’re trying to understand, and that you look forward to spending time with me once I’m doing better. 
  4. Check up on me. Sometimes, talking about my disease to other people feels like I’m burdening them. Often I won’t tell my friends if I’m not feeling great because it makes me feel as though I’m talking about my condition yet again. So if I do give the impression that I’m not feeling my best, and you happen to remember, shoot me a text. It’s a great reminder that you care.
  5. Be there once I’m feeling better. This is probably the most important one. I promise I’m not “flaking on you” and I swear I’m not a buzzkill. If I’m doing my homework and going to class anyway, that’s probably because it’s all I’m spending my energy on. My body is telling me I need to slow down and rest, and I’m listening to it, even if I don’t look sick from the outside. Therefore, the most helpful thing you can do is to be there when I feel better. Whether it’s a few hours or a few months, I’m going to need people to care about me and spend time with me once I’m doing better. Please please please stick around. I promise I’ll be a top-notch friend once I’m in full working capacity.

None of these things are easy to say, so I hope that this post helps you out. Feel free to send it next time anyone asks what you can do for them.

Living a life of “for nows” in the context of “forever”

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This past Sunday morning, I pulled out yet another command tape strip from the box at the top of my closet. When I moved into my room in January, I decided that the posters of paintings on my wall could be hung with blue tac. Over the course of the semester, they’ve slowly fallen, corner by corner, off the wall, leading to the slow replacement of blue tac by command strips. Before pulling the box out, however, I took a second to decide whether it was even worth the 5 seconds it would take me to replace it. I’m moving out of this room at the beginning of May, putting all of my things in the back of my car, and driving home, never to spend a significant amount of time between these four walls ever again. My Type-A personality overpowered me because a half falling poster on the wall is unpleasant to look at, but the hesitation was there none the less.

College, especially in a scholarship program like mine, involves a constant stream of ‘for now.’ Most evident is the constant shift in living situations. My freshman year I moved from my dorm into a hospital room, into a hotel room, back into my dorm and back to a different hospital room, and then into an Airbnb to recover from my second surgery. That summer, I went Home then (the capital is important here — “home” has taken on a new meaning), moved to New Orleans, and back Home. Sophmore year, I spent one semester at one university, had to spend a couple of weeks at Home because of shingles, and then the second semester at a different university. That summer, I went Home, then moved to a room in London, then back Home and then to a different room in London.

I’m not just great at packing, however — this constant shift in location mirrors a constant shift in friendships and extra-curricular activities. It’s a constant shift in philosophy and mindset, in habits and in what direction I need to sleepily reach out in when trying to turn off my alarm every morning. I don’t know where I’ll be in May of 2019, and, because I want to go to medical school, where I’ll be the year after that. I don’t know who my friends will be, or whose name I’ll smile at when it comes up on my phone. I don’t know what my email signature will say, or what colors will fill up the rows of my Google Calendar. Life as a young adult is a collection of temporary situations, as concurrently unnerving and exciting as they may be. What I do know, however, is that I’ll have Crohn’s Disease.

It’s strange to live in a permanent state of temporary situations with my disease as a constant. I know that in May of 2019 I’ll still be trying to sleep eight hours a night and constantly eat quality food. I know that I’ll be thinking about how my digestive system is working most hours of the day and that I’ll be trying to get regular exercise because it lowers the risk of a flare. I know that I’ll probably still be immunosuppressed and putting on facemasks whenever I go into a high infection risk environment. I’ll still be having regular blood tests, and trying to moderate my stress.

Is it odd that I find comfort in this constant? Sure, having Crohn’s Disease for the rest of my life isn’t the best card to draw. But as someone who values stability and consistency, knowing that Crohn’s and everything it implies for me will be a constant almost gives me a safe place to go when the cardboard boxes of moves overwhelm me. I won’t have all of the books on my bookshelves in each place I sleep in, but I will have my diagnosis. Most of my habits will stay the same, while the friends I look to for an understanding of them differ. If I build a living room of the constants in my life in my brain, Crohn’s Disease is a red velvet couch — it’s the centerpiece that you really can’t put much other furniture around.

As I write this sitting in a restaurant I won’t regularly visit after another year has passed, I take a sip from the glass of water next to me. ‘Hydration is important to decrease kidney stone risk’ pops up in my mind as others’ fundamental values might — it’s there, I’m aware of it, but it’s a thought that serves as more of a safety blanket than a revolution.

Reflecting After Two Years

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Alright, first things first — for a while, I think this blog is going to turn more into a place of reflection and less of a place where I provide advice (although reflection can lead to some helpful observations). I’ve been putting a load of my helping energy into the Patient Advisory Council of ImproveCareNow, which has become an outlet for the advice I can give. Two years post the emergency room visit, however, I’m finding that I need a space to reflect on who I am and how that experience changed me.

I’ve had people tell me that I dwell too much on 2016. How could I not, though, when 96% of my most life-changing experiences up until this point happened over the course of those 12 months? Yes, going to college is life-changing. Moving to the United States — also life-changing. But having your body stop you in your tracks after years of lack of self-respect? That’s revolutionary.

This Thursday, March 8th, is the two year anniversary of when I Ubered to the hospital with so much pain that I legitimately could not stand upright. I had attempted to manage the daily pain with over the counter painkillers and balanced going to class with lying down as soon as I could get back to my bed and falling asleep for 14-16 hours a night. At that point, I was only able to stomach plain chicken breast and mashed carrots, which I was asking my friends to sneak out of the dining hall for me — even making my way into that loud, crowded space was too much to ask. On March 8th, 2016, I went to class in the morning and was out of breath as soon as I got there. After class, I sat down on a couch and quickly realized that I was in so much pain I would be unable to get up. The pain fogs my memory from there — somehow I managed to get to my dorm and realized that I could not walk up stairs or stretch out my body. Somehow I managed to call an Uber and make it to the emergency room. Somehow I ended up lying on a trolley shaking from the amount of pain I was in. Until the ER doc told me that my inflammatory markers were through the roof and I was going to likely have surgery during the next week or so, I was still in denial.

Prior to this point, I had not been kind to my body. I was not sleeping enough and in normal enough intervals. I was not being meticulous about what I ate. High-school had instilled such a degree of stress in me that I cherished the 40 min bus rides home because carsickness gave me an excuse not to study. To make matters worse, I thought that my social life had to be perfect and would turn into a ball of anxiety whenever anyone was upset with me. I hadn’t had a terrible flare up of my Crohn’s Disease for the past 4 or so years, so I didn’t remember the pain or the exhaustion (a common problem in pediatrics). I was ready to ignore the warning signs my body was giving me and push it to its limits, chronic disease or not, for the sake of success (whatever that means). I was in complete and utter denial. By the summer after my senior year (23 college and scholarship applications later), I had completely shut off my ability to process what was happening to my health.

There’s nothing like 3 and a half surgeries and a case of severe shingles to really knock you back to where you should be, though. I’m almost grateful that my recovery was not anywhere near as easy as I had hoped, that only one of those surgeries was expected, and that I got shingles to boot. Without all of that, I don’t know that I would have been able to realize what really mattered to me, figure out my relationship with my body, and understand what my priorities should be. I’m not sure that I could completely process this all last March — the memories were too fresh and I could almost still feel the IVs in my arms. Two years later, I’ve had that time. Here are some things I’ve learned.

  1. Sleep and good nutrition should come in at number one on your list of priorities. I don’t care that you have a midterm. It can wait so you can get 8 hours of sleep. Try learning some better strategies to focus during the day. There is always time for this. Don’t convince yourself that there are more important things in your life.
  2. The people who matter are those that will make time for you and come to your bedside because they know you need them, and not because you’ve asked them to. Don’t let them go.
  3. When all of your friends know you as someone who’s sick, it can be difficult for them to adjust to your health. You have so much more energy! Life is exciting! You don’t have to flake on every dinner plan! Ease them into it.
  4. Listen to what your body needs. If your eyes are shutting, don’t drink another cup of coffee. If you’re hungry, don’t deny yourself a meal to save time. If you need to skip a class because your brain needs you to, do it. No academic curriculum is worth your mental health.
  5. Respecting your preferences is paramount. If you don’t want to engage in the same kinds of social activities as your friends, don’t. You are wonderful because of who you are. Respect yourself for that.
  6. When you’ve had a serious medical event, people tend to flock to help you at first, and then slowly drift away as your event continues to extend. This is okay. Different people have different tolerances. Maybe just don’t marry or fall in love with any of the ones who can’t handle it.
  7. If you find something you love, stick to it, even if that means that you have to let people down by committing less time to things that don’t interest you anymore.
  8. Having your shit together can be intimidating. Don’t apologize for that. You are respecting what you need to do for your own well being. Stick to the people who will respect it (and joke about how much of a mom you are).
  9. One of the most powerful things you can do for others and for yourself is to turn your negative experiences into advocacy. Help other people with what you’ve learned. It’ll help make you happier and process better.
  10. Surgical recovery is hard and disheartening and can completely change the way you see your body. If you need to go see someone, do it. Treat a therapist like you would the rest of your medical bills — your mind is just as important.
  11. Laughing about it is okay. Yeah, I have nerve damage from shingles in my right hip. Sometimes it sucks that it hurts to wear a backpack. But hey! It makes for a cool party trick when my friends tap my hip and I can’t feel it. I promise this is a lot funnier said out loud.
  12. If you need to stop processing your experiences while they’re happening, that’s okay. Keep them in a little backlog of things to think about. You’ll pull through.
  13. Be proud of yourself for overcoming all of the adversities you’ve been presented. You are capable, you are strong, and you can continue to persevere.

 

Mental Health and IBD

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Hi everyone. I know I’ve written about “staying positive” before on this blog, but I felt as though given the experiences I’ve had in the past year, I should write one about mental health and IBD in general. I’ve also had the chance to look at a number of different publications that deal with this issue, and the link between mental well-being and physical well-being.

The best way I can describe mental health and IBD is to refer to it as a “vicious cycle”. However widely and commonly used that phrase may be, however, it perfectly encapsulates how having a chronic disease that is in some part impacted by psychosocial factors can lead to worse mental well-being. Inflammatory Bowel Disease is no walk in the park, and feeling unwell can greatly affect your mental wellbeing. Given that IBD tends to affect the entire body when it’s active, it can greatly diminish your ability to perform day-to-day activities, which can lead to feelings of defeat and frustration.

As I previously mentioned, however, the relationship between the body and the mind in IBD is not a one-way street. Feeling poor mentally can greatly impact the activity of your disease. Mawdsley et al found that psychological stress, adverse life events, and depression have all been shown to increase relapse in IBD patients. In fact, Barnes et al noted that anxiety and depression are some of the two most commonly cited factors for readmission to the hospital for IBD patients. Being immunosuppressed, as many IBD patients are, can further exacerbate the issue, as increased stress may continue to depress the immune system beyond that which medications already do.

Unfortunately, I’ve had personal experience with this issue. in the semester following my surgery, I decided to take three chemistry classes, believing that the likelihood that my disease would relapse so quickly following my surgery was unlikely. Due to some complications with my scars/incisions, however, I ended up having to have one of them opened twice, which, when combined with the stress of my course load, gave me a severe case of shingles. Although my immunosuppression probably played a role in the development of the virus, another likely culprit would be the degree of stress I placed myself under.

Additionally, many IBD patients who I’ve spoken to have mentioned that their GI symptoms tend to get worse when they’re stressed, which follows seamlessly with the information gained from the studies above. The problem just worsens when you consider that many IBD patients are adolescents. Being a teenager brings with it a host of stressors, independently of a diagnosis with a chronic disease. Having IBD can make the issues faced by adolescents that much worse, creating the perfect breeding ground for anxiety and stress.

So, how do you actually deal with mental health issues and IBD? Getting control of your mental health symptoms is vital to getting control of your physical symptoms, so I’ve noted a few of the skills that have helped me in this endeavor below:

  1. Get help if you need it. However long it’s been since you were diagnosed, having IBD is not a walk in the park. It’s perfectly fine to need to talk to someone about how you’ve been feeling. Mindfulness-Based therapies have shown success with IBD patients, but it can be good to try out a number of different types of therapies until you find one you’re comfortable with.
  2. Do some sort of exercise. I hate exercising. I’ve never gotten to the point where I actually enjoy a run, or where I do it to relieve stress. However, it’s important to do some kind of exercise if you’re feeling up to it. Not only will the exercise help your mental health, but its regular exercise has been shown to increase IBD remission rates. Whether it’s a full body workout, yoga or simply setting yourself a daily step goal, a little bit of exercise is incredibly important.
  3. Practice self-care. Self-care is important for everyone, including IBD patients. Find some kind of activity that will relax you, whether that’s watching a series on Netflix, sitting in the bath, or reading an enthralling book. Taking time away from your busy life to do something that relaxes you can greatly increase your outlook. If you’re having trouble fitting it in, or find yourself thinking about all the work you have during this time, schedule it in. It should be a task on your to-do list like any other. Take into consideration that without your mental + physician health, you wouldn’t be able to do any of the other things on your to-do list. Good mental health is an investment in your future.
  4. Listen to your body. Probably the most important tip I can give is to listen to your body. If you’re tired, sleep more. If it seems as though something you’ve eaten isn’t sitting well with you, cut it out of your diet. If your GI symptoms are at bay, your mental health symptoms are more likely to be as well.

College and the Specific Carbohydrate Diet

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Although I’ve been doing the Specific Carbohydrate Diet for seven years now, doing it in college is an entirely different experience. No longer can you depend on having a full kitchen, as well as parents who may help you make something if you don’t have time. College is already a huge adjustment, and learning to do SCD while adjusting to college as a whole can prove to be quite a steep learning curve.

The biggest recommendation I have for patients looking to do SCD in college is to begin to see food as sustenance and not as enjoyment. You’ll simply have less variety than you would if you could go to the grocery store and choose whatever you want. You’ll also likely be on some sort of budget, and because SCD food tends to be more expensive than the typical diet of a college student, you may have even fewer options. It’s definitely important to ask your parents for some form of financial assistance if you’re not eating a balanced diet, however. Remember, good food = good health, and without good health, you really can’t do much, so don’t put that in jeopardy just because you’re a little pinched for cash.

So, with that out of the way, a few tips for what doing SCD in college actually looks like:

  • Firstly, when I moved in, I made sure I bought the largest mini fridge I was allowed in my room. This can be helpful when it comes to stocking up on fresh fruits and vegetables, as well as making the yogurt. Students applying to university should ask whether the dorms have kitchens, and if a microwave is not available in the kitchen, should consider investing in one themselves.
    In terms of food accommodations, if the patient tells the university that they are on an incredibly strict diet for medical reasons, they may be exempt from needing to obtain a meal plan. This can save students a lot of money that would otherwise be spent on a meal plan that supplies food they can’t eat. Ask about this. Don’t be shy.
  • Universities may offer meal plan accommodations, but when I asked for these, they gave me powdered eggs so I wouldn’t trust that. Emphasize how strict the diet is, and they likely won’t make up this excuse. However, some foods in dining halls may be helpful to patients on SCD. Some dining halls have hard-boiled eggs in the salad bar, for example, which students can stock up on as a good source of protein. There is also usually fresh fruit (like bananas or apples), as well as some dining halls have “churn your own peanut butter” which, when eaten with a banana, can make a great snack on the go.
    If the dorm has a kitchen, I have found that frozen veggies that I can steam in the microwave are a great staple. Making big batches of chicken breast, hard boiled eggs, and lentils for the week is also very helpful. If there’s a grocery store close enough, salad ingredients can help for a quick meal, especially when supplemented with nuts.
  • My diet generally consists of:
  • To save money on nuts, order them off of amazon. You’ll likely be consuming lots of them, so its worth it to buy your favorite nuts in bulk and making your own trail mix.
  • In terms of making the yogurt in my dorm room, I heat the milk up in the microwave and watch it until I see it reach the temperature where it’s nearly boiling. I then leave it to cool covered in cling film while I study, until it reaches 110F, at which point I add my Yogurtmet starter, blend it with my smoothie maker stick, and put it in the DASH Greek Yogurt Maker (listed above) for 24 hours. When that period has elapsed, I put it in my fridge, cool it completely, and then strain it using the strainer that comes with the yogurt maker. I have to do this fairly often given that the yogurt maker does not make a ton of yogurt, but I can complete other tasks while I do it.