Young, Nice, and Chronic Patient

Growing up is a process that we will all inevitably go through. We tend to live our lives with a sense that we are immortal. We learn to walk, we fall, we get up, we continue. Yes, life is pretty good. You learn a lot, you see new things, you spend a lot, you enjoy it. It is something that everyone does - living their life. It looks pretty simple until we start growing up.

In adolescence we begin to feel "older.” We go to school, we work for the coming of our adulthood. I looked like an ordinary teenager, I felt like an ordinary teenager - I thought everything was fine.

It was not exactly like that inside me. The reality was a little different. I was always the petite one of the class and I got sick often. The first symptoms of Crohn's disease began, which soon brought the psoriasis, then arthritis, and, recently, adrenal insufficiency.

New and full of life as I was, I was already setting goals for the future and dreaming. Yes, I was sure I would become an artist, I had decided.

Apart from some minor health issues, such as abdominal discomfort and lack of appetite, there was nothing wrong with me. That is, as far as I knew. I did not live in them, I was new. I was full of ambition!

I was about 15 years old when I began to realize that I should not take my health for granted.

I was at home relaxing listening to music when I suddenly collapsed in pain. I could not stand up.

A little later I was in the emergency room of a provincial hospital. Examinations, medications, but it seemed something temporary - it was not, as it turned out later. I was young, nothing could hurt me - or so I thought.

Then, I got some gastroenteritis (!) and it took me over a month to "recover" - obviously, since it was not gastroenteritis. Suddenly I started to get sick quite often. It had become difficult for me to live like an ordinary teenager, yet I was trying to go to school, the conservatory, and the orchestra.

I did not care much then, though. I was probably used to it. That was what I knew. I think my attitude started to change about a year later, when the visits to doctors and hospitals had increased significantly and I started to have more problems.

It was hard for me, as I suddenly had to struggle with things I had never imagined. I could no longer do what normal teens did.

As time went on, the "mysterious" disease then dissolved me more and more.

And life was moving on. I had to make brave decisions - it was not easy at the age I was then - as my health was deteriorating. I had to stop several things I liked or adjust them to the rhythms my body could handle.

I didn't do many things anymore. The only thing that kept me going was the music; it was becoming an increasingly important part of my life. I went to concerts very often because it was one of the few things I could do during that time. This made me face some of the difficulties I was going through.

After several years passed, I was then diagnosed with Crohn's Disease, psoriasis and arthritis. With the treatment I was receiving I was in remission and I had started to do everything. I was in university, I went on many trips, I went out and had fun, I went to concerts , I played in concerts. I no longer had almost any restrictions.

Until I began to feel very tired, nauseous, have a lack of appetite, and dealt with some other symptoms. I spent months looking for what had "broken" and why I felt that way. My examinations did not show any exacerbation of my known diseases. And then the day came when my rheumatologist told me to visit an endocrinologist and get tested for adrenal insufficiency, as the symptoms I mentioned made her believe that this diagnosis was very likely.

I could not make it to visit an endocrinologist because it was in the first wave of the pandemic, when everything was frozen around us, until I ended up in the hospital. A little later we had the results of my exams. My cortisol was very low, marginally detectable. My rheumatologist was right.

I was -again- newly diagnosed with something I knew absolutely nothing about and with a prescription for drugs I had never taken before.

In the following weeks I made the mental and physical adjustments to live with this new diagnosis that had just been added to my list of diagnoses.

Self-Care and IBD: Tips for a Healthy Post-Surgery Routine

Just this past June, I was rushed into the emergency room for examination under anesthesia (EUA) to address internal fistula and abscess formation. As life would have it, this was the same week that I was to start my D.C. internship in the Senate; with the new intern orientation ticking around the corner, I found myself drowning in anxiety just sitting in the emergency room. 

In a short amount of time, I had to manage my stress levels while planning for what my new summer life would look like post-surgery. With that being said, here are three tips to handle your post-surgery: 

1.  It is your choice on how you tell your immediate circles about your surgery. 

Sharing news about going into the operating room, especially under short notice, can be harrowing. In today’s age of social media, it often begs the question of how much is appropriate to share with our followers or our close friends. Remember that it is ultimately your decision as to when and how you tell your friends and close relations about your situation. 

Do not feel pressured in any way, especially regarding confidential medical details. With that being said, it can be comforting to know that caretakers and family will be there for you after your operation -- make sure you have the support you need to the extent to which you feel comfortable.

2. Treat your energy and capacity as if they were spoons.

Allow me to explain. One mentality that has radically changed the way I approached self care was the spoon theory: if one were to imagine their energy supply as a finite number of clean spoons they had to use throughout the day, then it is a matter of strategy on how one should distribute their spoons for the day. 

This tip can be applied to all aspects of life with a chronic illness, but especially after surgery. Don’t be afraid to prioritize yourself and your health during your postoperative recovery period. Those of us with IBD and chronic illnesses already have fewer ‘spoons’ to last throughout the day; as a result, we must be more mindful with our energy supply. Especially after surgery, we should focus on physical recovery and pain management above all.

3. Be kind to yourself. 

Sometimes, getting out of bed is the most you can do. Or, you might not even have the energy to sit up. What I’ve learned this past month is: you’re doing your best, and that’s enough. Every IBD patient is different; there truly is no one-size-fits-all answer. What I’ve learned is that living with Crohn’s disease looks drastically different from one patient to the next, creating what can be a very isolating and lonely experience. 

Nevertheless, with all these tips in mind, I would be remiss not to highlight how fortunate I feel to even have access to surgery and healthcare in the midst of the pandemic. I must also note that many of these tips are contingent upon the assumptions of having caretakers and a flexible routine, luxuries not afforded to many patients in more stringent economic conditions. As patient advocates, we should all be aware of the varying circumstances in which we all receive treatment. 

Undergoing surgery never gets easier, no matter how many times one heads into the operating room. However, I hope these tips can make your post-surgery transition a bit easier! Let me know what your self-care routine is like below!

"You Don't Look Disabled"

“ You don’t look disabled. 

“You don’t look disabled” but some days I couldn’t go to school because I couldn’t leave my bathroom.

“You don’t look disabled” but I have to go to the hospital every two months for the rest of my life. 

“You don’t look disabled” but I have tried seven different medications for the same disability within three years. 

“You don’t look disabled” but some days my joint pain was so bad I couldn’t even pick up a pencil. 

“You don’t look disabled” but every time I walk into a hospital I am comforted and terrified at the same time.

“You don’t look disabled” but I used to sleep only three hours every single day for weeks because my steroids made it impossible to sleep.

“You don’t look disabled” but some days I can feel my throat close up from suppressing my anxiety.

“You don’t look disabled” but I have sat on my bathroom floor feeling like I couldn’t breathe because the nausea from my medications was so overwhelming.

“You don’t look disabled” but I am. ”

I have never understood why people tell me I don’t look disabled or that I don’t look sick. What is disability supposed to look like? Disability is not singular. Disability does not look one way. Disability is diverse. 

I do not want to prove I am disabled to strangers or people I know.

Though the intention behind this phrase may be to compliment me, I never feel complimented. I feel small. I feel like a fraud. I feel like I am faking my disability in some way. I feel like I do not know my identity. 

It is time for people with invisible disabilities to stop being doubted for being disabled. It is time for everyone to change their perspective of what disability looks like. We must listen to others’ stories. We must stop being bystanders when people with disabilities are doubted. 

Disability is not a bad word. It is not offensive. We should not be afraid of it. 

I am disabled and I am proud. 

This article is sponsored by Lyfebulb.

Lyfebulb is a patient empowerment platform, which centers around improving the lives of those impacted by chronic disease.

Communicating IBD

“‘Inflammatory bowel disease’ (IBD) sounds like a straightforward term — a disease of inflammation in the bowel. However, the history of IBD reveals a story of a nefariously complex set of idiopathic conditions. IBD defies definition, in part because its pathophysiology is not completely understood. For the same reason and despite substantial advances in research, IBD also defies cure. At best, IBD can be defined as a disease of disruption — disrupted physiology, microbiology, immunology and genetics.”1

Repeatedly, one of the challenges I face in having IBD is being able to effectively communicate the severity and uniqueness of the disease to my friends, broader society, and, at times, even myself. The quoted part above from the paper ‘A tale of two diseases: The history of inflammatory bowel disease’ articulates the complexity and vagueness perfectly.

I distinctly remember a time at school when my understanding of the world shifted from ‘adults know everything and humans have control over everything in this universe,’ to teachers starting to draw lines around exactly what is known to us. What’s left out were things even the biggest scientists who got us to the moon couldn’t decipher. During this mind shift, we learned about the limitless scope of space, the depths of the oceans, the uncertainty of what causes psychopaths, and having no cure for cancerous cells, among other things. I remember the fear but also a naïve invincibility that while these uncertainties exist, they will not be applicable to me or my loved ones. But IBD is unpredictable; it can hit almost anyone, at any age. And all the videos I saw on Facebook celebrating the new reaches of technology in healthcare – like that one video of a microcamera in a dissolvable pill helping doctors to see inside the digestive tract without invasive procedures – were just that, videos of research trials. The reality was always so much more ~simple~ with burdensome invasive procedures, like colonoscopies. 

 Medications to “manage,” not cure, IBD, are also primitive in the domain of medication, not outstanding. They always come with trade-offs – like ‘Get your colon back, but lose your bones!’ or ‘Stop bleeding, but eat like a garden rabbit for the rest of your life!’ or my personal fav, ‘Manage your illness in the gut, but leave with debilitating fatigue, brain fog, anxiety and depression! Bonus: It’s all in your head, even your doc won’t believe you.’

Living with IBD can be especially difficult due to you having to explain yourself and your situation so much. People may think you have a variant of food poisoning, or you somehow brought it on to yourself with unhealthy eating habits. The stigma about the ways in which IBD exists gives little leeway to understand the severity of it. IBD is both a hidden blessing (maybe blessing is reaching too far) and a curse, as it forces you to learn to be compassionate with yourself (that’s a big part of the closest thing we have to a cure), but shows you the irresponsibility, ignorance and pure apathy of the society around you. With cancer, for example, the pain and trauma are duly acknowledged by society. There is a sense of responsibility the society (whether that’s friends, school, work, strangers) feels to stand in solidarity and be helpful in those moments. In having a chronic illness, granted it is not cancer but still a very traumatic on-going experience, there is no assumed empathy-net provided in those dark moments.

For people like me, with social anxiety and people-pleasing tendencies, explaining the gravity of what you’re going through can be an impossibly difficult task. As I’m nearing my 5th year of having IBD, I confess I still go back and forth between playing it down to not take away from anyone or carrying resentment for people who could not understand in the past. On my best days – enjoying my iced coffee and spicy Indian food - I invalidate myself and ponder, did I really have it that bad or was it all in my head? On my worst days - on my knees, clutching my abdomen or sweating with AC at full blast at 3AM at night - I bitterly revisit the hurtful comments I’ve received over the years. Life has to go on, and in going forward, IBD patients need to build a society that holds space for them. 

Here are short notes on how I hold space for myself, and ask people around me to do the same:

1. On Badtameezi

In South Asian families, roles in a family are decided according to the age and relation. For example, a younger person, even if more experienced in a certain field, is not allowed to voice his/her opinion on some subjects; it's called badtameezi.

Badtameezi is the South Asian society’s way of manipulating you to exist in a way they deem fit. Practicing privacy, setting boundaries, cutting off from anxiety-inducing family members, and decision autonomy are just a few examples of being a “bad” person. All of the above are obviously necessary for a person with a chronic, stress-related illness, so it becomes important to choose whether you want the badtameez label and health, or tameezdar label and continuously deteriorating health.   

2. On Comparison

In the South Asian diaspora, the competitive spirit is a prominent aspect of life. India is the second most populated country on Earth, soon to be first, and resources are low, perhaps that’s why competition is high. While healthy competition is important in bringing out qualities like hard work and ambition, competition about health crosses lines over to absurdity. Yet, this is quite common. A simple “No, it’s not the same,” or “No, I feel like you’re not understanding what I am dealing with,” or “I’m very sorry you had to go through that. My illness however is very different because…” can suffice. If they’re open to it, you can open up about it more.

3. On Self-Invalidation,

It’s useful to journal during flares, not only for the benefit of your mental health, but also to keep track of your feelings on the worst days. To check in with yourself during those times makes it easier to not invalidate your experiences later on. I don’t have the discipline to keep journaling daily, but every time I am in physical pain, I do grab a pen and notebook to jot down my mental state and thoughts, and I refer back to it in times I forget what my experiences have been like. It’s also helpful to engage with a support group; the conversations around other’s experiences with triggers, symptoms, tests, doctor’s visits, work, friends and family can help you understand and navigate your own. Disclaimer though, everyone’s experiences are different in all the dimensions of the disease; your lived experiences will always be unique. Lastly, I like talking to someone who’s seen me at my worst to remind me how it really was, and that it was not all in my head. This could be a close friend or family member.

4. On Unsolicited Comments,

Just call them out on these. It’s 2021, people need to stop commenting on your weight gain/weight loss and any other changes they see in you, irrespective of whether it's due to your illness. A simple but firm statement like “If I need your opinion, I’ll ask for it,” or “I like it this way,” can help establish a boundary. 

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1 https://academic.oup.com/ecco-jcc/article/8/5/341/616781

Friendship and IBD

“Friendship is the hardest thing in the world to explain. It’s not something you learn in school. But if you haven’t learned the meaning of friendship, you really haven’t learned anything.” – Muhammad Ali

I started with this beautiful friendship quote because I’m going to talk about Friendship in this article. Friendship is a very unique relationship. Friends are not related to us by blood, even though they won’t have any expectation in the relationship they are always with us to support, to help, and to find purpose and meaning in our life. For me, they’re one of my major pillars in my life. The emotional bond between my friends and I helped me to recover back my strength, especially during pre and post-surgery. In this article, I would like to share how my friends helped me to build back my strength during my early days of being diagnosed with Crohn’s.

My friends have been good listeners. Whenever I have problems, the first group of people that I look for are my friends, not even my family, because my friends are willing spend their time to listen to my problems and my feelings. They’re fully present when I start to talk. There are no distraction such as phones, people, or work, and they give their 100% focus to what I’m saying. I was in campus during the time I was officially diagnosed with Crohn’s. I was depressed, and they were the ones l looked for to talk to and to share of my health condition with. Once I uttered everything I wanted to say, they kept silent for a moment and then they started to give their suggestions. The point is, they listened and digested my problem before giving their best solution. I think this is the best part of friendship because they didn’t jump to conclusions. Instead, they listened to me first.

They cheer me up with great humor. My friends do understand laughter is one of best medicines to keep me healthy. My friends, unlike myself, are funny and their sense of humor always bring me happiness. In our conversations, there are always some funny jokes that make me laugh. Even when I’m in a bad mood, they are able to make me laugh and refresh my mood and cheer me up. In fact, friends with a good sense of humor can make our world feel good. Whenever I spend time with them, I never have a thought of pains, depression, or that I have Crohn’s.

Another great quality of my friends is that they care about my daily activities. This is an important quality that my friends show toward me that I really appreciate in them. Caring friends take a lot of dedication and love to keep the relationship always warm. My friends often call me to ensure I’m doing fine. They accompany me for my endoscopy appointment every year. They take extra caution on my food intake whenever we go out to eat. There are many more things that they do for me. And, most importantly, they also like to use positive words to keep encouraging me. They’re say encouraging words such as “you can do it Sara”, “you must be strong” to motivate me so that I can keep moving on in my life. Their words give me more confidence and strength whenever I need it. Their words lead my thoughts and emotions to positive ways.

Friends provides a place for us to share and to discuss our feelings. In fact, friends are the best emotional medicine for people like us to overcome from depression and lift us up and encourage us to take a leap of faith to change our life into something better.

World IBD Day: What's Something You Wish People Knew About Living With IBD As a Young Adult?

"What’s something you wish people knew about living with IBD as a young adult?"

Savannah:

As a young adult with IBD, I wish others knew how hard it is to balance nurturing our health while also taking part in classic twenty something year old activities. Not only do we have to focus on our health everyday but we are also navigating the world, discovering who we are and what we want to be. IBD doesn’t define us and our goals, but it sure does impact us on a daily basis and creates significant barriers. 

Andre:

Having IBD as a young adult robs you of fully experiencing your youth. Most of us are diagnosed between the ages of 18-26. These are formative years that will influence the rest of our lives, but we are not afforded the opportunity to experience the same highs as our healthy peers. This does produce a high level of perseverance, but the isolation and FOMO will always be present. 

David Gardinier: 

I wish people knew how much energy is at a premium for us. I feel like with IBD, I have a set amount of energy each day. If I use all that energy up during the day in my internship, I don't have any left for the rest of the day. This is especially true when I go out and play ultimate frisbee. I wish everyone else knew that I am not just being lazy halfway through the game, but that I actually get tired twice as fast as everyone else even though I am doing the same amount of work. It can be frustrating knowing that my disease will hold me back from performing the same as other people the same age I am. The more people that know how much fatigue impacts young adults with IBD, the more empathy will exist surrounding this disease in our population.

Jennifer:

Tackling a chronic illness as a young adult is overwhelming, to say the least. To fight a disease that can neve be cured, while simultaneously trying to figure out who you are and what you want to do with your life -- well, that’s hard enough as it is. I hope people can be compassionate towards young adults with IBD, realizing that we are battling a fight they may not always see.

Sara:

Many people have the wrong conception about young adults who live with IBD. They think having IBD is karma, especially for those from Asian countries because their life is filled immensely with strong cultural and religious beliefs. This thought that IBD is caused by Karma is unacceptable and should not be entertained. Living with IBD is not karma; in fact IBD patients are warriors. Young adults with IBD are brave and super strong people. In today's world, they face so many challenges in their daily life, such as family, relationships, finances, and social pressure. But still they never give up in overcoming those challenges and prove their life is beautiful.

Nathalie:

I wish people knew that living with IBD as a young adult does not make me too weak to handle things. Sometimes people keep things from me to protect me or because they think I’m going through too much to hear about someone else’s life. I believe these intentions are honestly kind, but it’s okay to ask for my support. My normal is different from a lot of other people’s normal and that's okay. I don’t feel like I’m going through too much and I don’t feel weak, my IBD isn’t tragic, it is just a part of my life. 

Kumudini:

I just wish that people knew it's normal for any human being to use washroom the number of times one wishes. Moreover, nobody is voluntarily willing or would like to time pass there. Its absolutely normal to miss appointments and give us the space of silence. We did not invite this disease by unhealthy eating habits. We never would like to refuse any yummy food, it's just that we love our intestine so much and we do not want to dump it with something which doesn't suit it.

Vasiliki:

Getting diagnosed with a chronic illness such as IBD is always a difficult condition. It is even more difficult when you receive this diagnosis at a young age. You suddenly find yourself dealing with issues that have to do with your health; you try to find ways to improve your health and balance the daily life of a young person with the life of a chronic patient. This is not always a straight line, sometimes you encounter obstacles and difficulties, but with will and effort you overcome them and move forward. The most important thing for me in this whole journey is to find allies who can support you and help you effectively. Αnd of course in no case do not give up your dreams. Τhe difficult days will come and go, but life is in front of you even if sometimes it is cloudy. Remember that you are more than your illness! 

Disability Makes Me Feel Colorful

When I was first diagnosed with Crohn’s disease, I remember hating myself. For so long, I was so angry at the world. I was angry because I couldn’t run anymore. I was angry because I was in pain. I was angry because I felt like I wasn’t capable of anything. 

The stigma of disability is often composed of beliefs that people with disabilities are too sick to do anything, are not capable, and weak. 

Years later I realized the only reason I hated myself and hated my disability was because society made me believe that having a disability was the worst thing that could have ever happened to me. 

People would frequently tell me things like I should reconsider what I wanted to do with my life because of how my illness would impact me. I have been told that it was surprising I could even do what I have done in my life. I have been told that I would be in pain forever.

I have had doctors not believe in me. I have been blamed for my illness. I have been shamed for my weight, for not eating enough, for not trying hard enough, for being too tired, for eating too much “fast food” and an endless stream of hateful and hurtful words.

Sometimes even members of my own family would shame me and suggest I caused my own illness. I think that hurt the most. 

But they could not have been any more wrong. 

Living with a disability allowed me to see my black and white world in color for the very first time. 

My disability gave me inspiration for my future career. It allowed me to realize what my true passions and dreams were. It allowed me to appreciate the smallest, tiniest things that no non-disabled person would ever be able to notice. It opened up the door for new hobbies. It empowered me to focus on my mental health. More than anything, it gave me a second chance at life. 

I live for myself now.

I started painting which is weird because I used to only be able to draw little doodles on the bottom of my notebooks. 

I do yoga when before I would over-exercise and tire out my body. 

I found out about Trader Joe’s vegan chocolate chip oatmeal cookies with coconut (only after the very serious hunt to find snacks that were IBD friendly for me).

The air tastes better. Songs are not even songs anymore; they are seven different melodies and sounds happening at the same time and I can appreciate every bit of it. Every time I take a step without pain, it makes me feel like I am walking on clouds. The sun feels warmer.

I feel colorful. 

Personally, my disability was the best thing that could have ever happened to me. It is difficult. It is painful. It is exhausting. 

But it does not make me weaker than anybody else, less capable than anybody else, and I do the same things anybody else does, and I do it while I’m sick too. 

This article is sponsored by Lyfebulb.

Lyfebulb is a patient empowerment platform, which centers around improving the lives of those impacted by chronic disease.

Tribute to Khichdi - A South Asian IBD Comfort Food

Note: While Khichdi is regarded by many as a nutritious, can-do-no-harm food, and has existed in ancient ayurvedic literature (ancient Indian medicinal journals) as a food that cleanses and heals the digestive system, the food is not a one-stop solution to IBD, and there is always the chance that it does not suit everyone’s bodies. My views are not medically backed, as I am not a nutritionist, dietician or doctor; I talk about my journey of IBD with a food that has become dear to my heart (and tract).

Khichdi has a soft spot in the hearts of many South Asian people, not limited to just the IBD folks. It’s appeal to such a diverse diaspora over a varied amount of time is amazing but not surprising, due to its flexibility in becoming anything it’s fans desire. In India, a country with many inequalities, khichdi is a dish that can both dress up fancily as a wholesome comfort food for some, and strip down to a humble meal that provides a day of nutrition for others, becoming a unique thread that ties the polar opposite lifestyles of the rich and poor of India. It simultaneously also acts as a thread connecting the ill and healthy, with Ayurveda texts prescribing it as a staple meal as part of a larger lifestyle free from illness and pain, but is also a very popular meal outside of Ayurveda. It has its place in popular literature1, journals of travellers2, was chosen to be the main showcased food for World Food India 20173, has a dedicated restaurant to capture its varieties4, and is used widely as holy offerings in Hindu temples5. The meal has countless variations in all the states across the country, retaining its quality of being a trusty comfort food at its core, a pretty big feat considering all the various ways the states of India differ so widely.

When I first started showing symptoms of Ulcerative Colitis, among my many concerns, one big one was how my diet was going to be constricted to only khichdi. For a lot of the South Asian community, this restriction to their diet as they were diagnosed/even now when they show symptoms, is very relatable. I had observed a few years of my brother’s diet with UC before I started showing symptoms myself, and I cringed at how disciplined he was expected to be in eating bland khichdi, oftentimes for multiple meals, for days, weeks, even months at a time. My first few years of having UC, I followed the same path for the first couple of years, following treatment only in the Ayurvedic realm, which required many bland bowls of the rice meal. It’s safe to say I was sick (not the IBD way) and tired of it. It wasn’t until I was out on my own, in rural India for the first time, that I realized my need and dependence on the food I had come to rely on so much after learning to listen to my body. During my first few weeks of being in a remote village managing my flare ups, I was uncomfortable on many levels, and yet my memories shine with gratitude for the few times I was able to successfully find and/or be invited for a warm and simple meal of khichdi. It had effectively found a place in my heart as the one and only food that I could rely on, even in the remotest of places. 

Below are my recipes for a flare-up version a and normal version I like to enjoy as my go-to comfort food:

Plain Khichdi (Flare-Up Version)

Ingredients:

1 cup rice (any, preferably broken)

¾ cup lentils (yellow mung split)

7-8 cups water

1-2 Tbsp ghee (clarified butter)

½ tsp turmeric

Salt to taste

Steps:

1. Wash rice and lentils in a bowl, and add to a pot on a stove.

2. Add salt and turmeric and bring to a boil.

3. Cover and put in on a medium-high heat. It will take 15-20 minutes to cook. It’s best to keep stirring occasionally and checking to get a porridge-like consistency.

4. When cooked, pour into a bowl and add ghee on top. Enjoy!

Khichdi with Vegetables (Normal Version)

Prepare Khichdi same as above.

For the Vegetables:

Ingredients:

2 inches bottlegourd, peeled and diced

1 carrot, peeled and diced

1 green bell pepper, diced

1 tomato, medium sized, diced

1 onion, medium sized, diced

1-2 Tbsp ghee

¼ tsp garam masala

¼ tsp paprika

Salt to taste

Steps:

1. While khichdi cooks, heat up a frypan with ghee.

2. Add the onion. When the onion turns translucent, add the tomato.

3. Add salt so the tomato mushes up quicker.

4. Add the carrot and cover the pan. Keep stirring occasionally. If needed, add water to fasten the cooking.

5. When the carrot is soft, add the bottlegourd. Cover the pan and let it cook, checking from time to time.

6. After the bottlegourd is cooked as well, add the bell pepper.

7. Depending on how mushy you like you bell pepper, add your spices (garam masala and paprika) and remove from heat. Keep the pan covered for some time.

8. Plate on top of the bowl of khichdi. You can add more ghee on top as per your liking. Enjoy!

9. Khichdi is generally paired with plain yogurt in India, as well as pickles and papadum (crispy lentil chip).

1 https://www.moralstories.org/birbals-khichririce/

2 https://www.thebetterindia.com/119823/khichdi-history-brand-india-food/

3 https://seachef.com/khichdi-gets-ultimate-boost-to-be-promoted-as-brand-india-food/

4 https://khichditgf.com/

5 https://metrosaga.com/indian-temples-and-their-prasadams/

The Power of Music

I still remember the first time I listened to the song Where’d You Go by Fort Minor. It was June of 2016, and I had just recently been diagnosed with Crohn’s disease and finished my last semester of high school. It had been a semester of overcoming pain and fatigue to drag the shell of my body across the high school finish line. With those less than stellar circumstances, I was overcome with emotion hearing the lyrics describe in words exactly how I was feeling: 

She said "Some days I feel like sh**,

Some days I wanna quit, and just be normal for a bit,"

 I cried then, and I still tear up occasionally listening to the song and thinking back on that period of my life. That is the power of music, the ability of the songwriter to share their feelings in a way that connects with another human. It grants the comfort of knowing that others have experienced the same things you are experiencing now. That can be powerful for those of us with IBD, because it can be so easy to feel isolated and alone in our struggles. 

Today, I want to take you through some songs I feel reflect the IBD experience for me. I encourage you to listen through the links as you read.

One song I keep going back to is Times Like These by Eden Project. The first verse starts out with what a lot of us feel sometimes:

It's been a long, long time

We've come a long, long way

No, I can't see the finish line, scared half to death, but that's okay

It's been a long, long night

After a long, long day

My body's aching, but I know somehow, my feet will find a way

I don’t know about y’all, but I can think of at least a dozen times I felt like this with my IBD. It can be so hard to try to imagine the finish line when the reality of your disease forces you to acknowledge the present instead of looking toward the future. And that is scary. When day and night you are exhausted just putting in the bare minimum effort, you can forget to look at the big picture. I don’t even have to tell you how much I relate to the body aching line. But the great part about this song is that it doesn’t end there. Near the end, the artist sings:

These are the times we will hold

In the silence, when I've given all of me

And it's alright that it's over

And I found fight, like a soldier coming home

In the silence, but I have never felt so free

The future's so bright, this is our time

And I'll live it how I dream

It is beautiful how the artist not only changes the lyrics to reflect the hope, but if you listen, the entire mood of the song changes as well. The tempo speeds up, the instruments are cheery, and there is a joy in the tone of the singer. I know when I had flares in the past, it didn’t feel like a time in my life worth remembering. But I do look back on those times in my life now and see how they shaped my future. I see how I was supported and loved by family and friends, and how it gave me a feeling of gratitude for every new day on Earth. Some days you won’t be able to see the finish line, but eventually you’ll look to the future and it will be so bright.

Another song I feel encapsulates the IBD experience is Mountain at My Gates by Foals. It starts out with this verse:

I see a mountain at my gates

I see it more and more each day

What I give, it takes away

Whether I go or when I stay

Doesn’t that just sound like the IBD experience? We have this mountain of IBD in front of us, and sometimes it feels like it takes away everything from our lives. The beautiful thing about this song is it is about overcoming that mountain. The second to last verse goes like this:

Oh, when I come to climb

Show me the mountain so far behind

Yeah, it's farther away

Its shadow gets smaller day after day

Sometimes our disease can just feel impossible to overcome. But one day we will come to climb, and we will have realized we have conquered that mountain. We will look back, and see all that we have accomplished. Whether it is overcoming a flare, graduating college, or just taking a shower this morning, we all have mountains ahead of us that are made more difficult to climb by our disease. That just makes the view that much better once we reach the top.

Please leave a comment with any song you felt has been an integral part of your IBD journey, I would love to give it a listen.

Overcoming Medical Trauma with IBD

I have anxiety. 

I am afraid to speak up, almost all the time.

I press my nails hard into my palms when I think about why I said “How are you?” too quietly. 

I bring this up because about one year ago, I had an allergic reaction to an infusion. I had been on this infusion for several months, almost a year at the time. At first, I stayed quiet about the symptoms I had been feeling for a couple of weeks leading up to it.

I think a part of me genuinely thought it was in my head. When people around you are constantly telling you your illness is your fault or that you look fine or that your symptoms are just your anxiety, you start to believe it. 

It started with red, blotchy spots all over my skin. Some days were worse than others and eventually, I went to see a dermatologist who prescribed me a topical medication and I didn’t think anything of it except for the occasional feeling of shame when the spots became more visible. 

At the infusion before my reaction, I remember just thirty minutes into it, I felt so sick. I could hear my heartbeat in my ears and everything felt slow. I remember trying to explain that I wasn’t feeling well and then downplayed it for just being tired because I’m used to doing that.

At my next appointment, the same thing happened. I started to cough and my lungs and throat felt itchy. I felt little ants all over me, starting at my feet all the way up to my chest. I stayed quiet still because I thought I was just making it up in my head until my nurse pointed out that I looked a little flushed. 

When I got up to go to the bathroom to check it out, with the IV machine trailing behind me, I stared at the mirror in absolute shock when I saw welts the size of quarters flooding my skin and hives spreading quickly across my chest and neck. My mother who was with me became panicked and called the nurse who immediately notified the doctor. 

I remember I started laughing hysterically because I was so afraid. The nurse quickly started Benadryl through my IV and I was just shaking because I felt so cold. The doctor was asking clarifying questions but they just sounded like echoes in my head. Eventually, the reaction subsided and I just layed there, stiff, with anxiety. 

What I didn’t know was that ever since that day, anytime I go to an infusion or take one of my medications I am so afraid of it happening again. I got lucky that my nurse noticed something was wrong before it was too late, but I can’t help but wonder if I had just spoken up earlier I could have avoided all of this in the first place.

But I want to stress that it is not your fault for not speaking up. Sometimes it can feel like anxiety is taking control over your life but every day you struggle with anxiety and still choose life, you are the one taking control of your life. 

I don’t feel guilty anymore for not speaking up then but now I understand that I deserve to speak up for myself now. I deserve to be heard. When it comes to your health, it is never just in your head. What I mean by that is whatever symptom you are feeling-- whether it be a physical manifestation of anxiety, racing thoughts, pain, discomfort-- those are all valid and not imaginative. 

The next time you feel too anxious to speak up, just remember that you deserve to be heard. 

This article is sponsored by Lyfebulb.

Lyfebulb is a patient empowerment platform, which centers around improving the lives of those impacted by chronic disease.