Author: Kelsey Schneider

Making it Work During the Week: Meal Prep with Chronic Illness

Finding, shopping, and making food you like can be hard. Like, really hard. Add in a chronic illness that not only leaves you feeling exhausted, but greatly impacts your food choices, and making meals seems like an impossible task.

As I finished college and began my first full-time job, I knew my days of stopping at campus convenience stores for quick lunches and relying on a random assortment of snacks put together to form a make-shift dinner (“girl dinner” as I lovingly call it) couldn’t go on. Several weeks into my job, I was already feeling my body bogged down by processed meals and lacking nourishment. I was surviving on frozen dinners for nearly every meal – not exactly nutritious.  

Then, I discovered soup. Soup has been my savior. My thrifted soup pot has made me so many pots of soup that I cannot imagine my life without it. What started as a fun weekend recipe has now become my meal prep essential. A crockpot recipe can make up to two-weeks worth of lunches! I highly recommend using deli containers to store and freeze since it avoids the lid mismatch headache. Purchasing pre-chopped vegetables and using shredded rotisserie chicken makes these soups even easier.  

Later, I added in a rotation of overnight oats for breakfast which has eased my breakfast woes, leaving me satisfied and fueled throughout my busy mornings. Most recipes save for 3-4 days in the fridge, so you can prepare for the majority of the week at one time. Yogurt with berries is a nice option for the mornings when I am looking for something different. 

As for dinner, I’ll be the first to admit that I haven’t quite mastered that one yet. (Though I do love the Beef and Broccoli in the cover photo. Easy for weeknights!) At the recommendation of my dietitian, I have had success keeping higher protein snackier options on hand, such as hard-boiled eggs, edamame, and cottage cheese, as “girl dinner” still seems to be my preference during the week when cooking feels like too much. However, I have also found many nutritious frozen options I enjoy as well. It’s all about finding what works for you!  

Remember, we each have different dietary needs, and it is incredibly important that you’re giving your body the fuel it needs. I highly recommend working with your medical team and specifically a dietitian to ensure your food choices both meet your body’s needs and are sustainable for your lifestyle and preferences.  

Here are some of my meal prep favorites that work well for me. Maybe they can work for you, too. 

SOUPS

Hint… Using pre-chopped veggies and shredded rotisserie chicken make all of these recipes easier!

OVERNIGHT OATS

SNACKS

    • Cottage Cheese 
    • Hard boiled eggs / egg salad 
    • Tuna or chicken salad and crackers (Aldi sells these in the “canned meats” section)
    • Protein bars and shakes 
    • Salad kits 
    • Mixed array of ready-to-eat vegetables (my favorites are carrots, celery, and cucumbers)
    • Crunchy roasted edamame (most affordable at Costco/Sam’s Club but sold elsewhere, too) 
    • Yogurt of your choosing (I prefer ratio protein yogurts)

FROZEN ESSENTIALS

    • Banquet Chicken Pot Pies (These are $1 at walmart, but recommend adding chicken and/or canned veggies) 
    • Shrimp Scampi (Costco/Sam’s Club) 
    • Pork/Chicken Dumplings 
    • Birds Eye Voila! Garlic Chicken Skillet Meals (This package makes dinner for two. I prefer to add extra chicken.)

All about Dietitians!

Dietitians are credentialed food and nutrition experts who can help you personalize your food choices to best fit your individual needs. For me, this has helped me reduce long term risks associated with medication I take for my autoimmune disease, learn how different foods affect my body, and I have tried many new foods along the way!

Finding a dietitian that is covered by insurance and meets your needs isn’t always a straightforward process. Personally, I have utilized a telehealth service because that is what is most accessible to me and best covered by my insurance. Remember to always check your insurance coverage as every plan is unique and can cover different services!

Below are a few tips and tricks to finding a dietitian. 

    • Make sure you are seeing a “registered dietitian” specifically. This is a regulated and credentialed professional who is a trusted expert. Comparatively, a “nutritionist” is not a regulated term – anybody giving nutrition advice can call themself a nutritionist.  
    • Contact your insurance to learn about in-network options. They can tell you exactly which dietitians in your area are in-network with your plan. 
    • Ask your primary care provider or specialist for a referral – clinics often have a dietitian within their office or health system, but it is not a commonly known service. 
    • Consider telehealth options: many telehealth services such as Nourish, Fay Nutrition, BerryStreet, and Health Loft offer dietitian services via telehealth. These services are in-network with many large private (employer) insurances and are typically billed as preventative care, resulting in low out of pocket costs.  

Sex, (Prescribed) Drugs, and Rock ‘n’ Roll: Approaching sexual and reproductive health with an autoimmune disease

On November 13th, Young Patients’ AREA hosted our second event of the year: Sex, (Prescribed) Drugs, and Rock n’ Roll: Approaching sexual and reproductive health with an autoimmune disease. In this event, we utilized a new format that included a mix of pre-recorded expert Q&A and live patient-shared experiences.

Dr. Brittany Huynh, pediatric rheumatologist and adolescent medicine specialist whose interests include reproductive health among adolescents and young adults with rheumatic and other complex chronic diseases.

Dr. Erica Brenner, pediatric gastroenterologist and clinical investigator currently investigating reproductive health among young patients with IBD.

Dr. Becca Overbury, rheumatologist with research interests in health care transition in adolescent and young adult patients with childhood and adolescent onset Rheumatic diseases.

Our experts covered a variety of topics including why having conversations about reproductive and sexual health with your disease specialist is important, strategies to start these conversations, and key points patients should know about how their disease and/or medications may interact with their sexual and reproductive health. Below are some of the highlights of what our experts spoke about, but be sure to watch the complete recording to hear their complete insights. 

Talking about these topics can be awkward, and doctors know that. To help broach the subject, they recommended strategies such as asking for one-on-one time with your provider (this is also good practice for getting independent in your care!), bringing up these questions early in the appointment to ensure there is plenty of time to discuss, or sending a MyChart message ahead of your appointment if you’d like. These are super important topics to talk about because your condition DOES overlap with your sexual and reproductive health. 

In terms of disease/medication interactions with sexual and reproductive health, we learned of risks of blood clots associated with certain conditions such as systemic lupus or Crohn’s disease, which may be further increased when using birth control that contains estrogen. Similarly, individuals with certain autoimmune conditions such as inflammatory bowel disease or those treated with high doses of steroids may be at higher risk of long-term bone density related side effects when using certain forms of birth control, such as Depo Provera (“the shot”). This section was incredibly informative and contained a lot of information I myself hadn’t heard about before, so I highly recommend reviewing the experts’ complete information in this section. 

Experts additionally emphasized that in the majority of cases, individuals with autoimmune conditions can have successful pregnancies if they wish to do so. Experts echoed that outcomes are most successful when your condition is well controlled and recommended communicating with your doctor ahead of time to ensure your medications are safe for pregnancy. Dr. Brenner also highlighted preliminary data suggesting that individuals with inflammatory bowel disease who do have trouble getting pregnant and choose to pursue assistive reproductive technology like IVF are just as likely to have a successful pregnancy as somebody without inflammatory bowel disease. 

Additionally, a key point brought up by Dr. Huynh emphasized understanding your emergency contraception options, like Plan B or ella: “This is a medicine that you can take no matter what disease you have, no matter what medications you’re taking, and it is safe. So anyone can take it.” Emergency contraception options like Plan B and ella are legal and available in all 50 states, though the more effective option, ella, does require a prescription. Dr. Huynh recommended asking your doctor for a prescription before you even need it so that you can have it on hand. 

Other resources recommended by our experts:

The complete recording of this event can be viewed here. All opinions expressed are the personal perspectives of these individuals and not representative of their institutions.

We thank Dr. Huynh, Dr. Brenner, and Dr. Overbury for contributing their time and expertise to this event.

Finding My Voice: Building a Partnership with my New Rheumatologist

My name is Kelsey, I’m 23 years old, and I live with spondyloarthropathy/enthesitis-related arthritis. Recently, I transitioned from my pediatric rheumatologist to an adult rheumatologist. This is a big step that many young people with chronic conditions eventually face, and it can often be difficult. In my case, this transition turned out to be the perfect example of shared decision-making in action.

Shared decision-making is when patients and their healthcare providers work together to make decisions about treatment that are informed by science, the patient’s history, and the patient’s values and preferences. Instead of my doctor simply prescribing me the next medication, I wanted to have a thoughtful discussion that took into account both the science and my lived experience.

At the time, I was considered “stable” on my medication regimen, but I was struggling to consistently take my weekly injection. All of my other medications were pills taken 1-2 times per day, but the injection required multiple steps, and I often delayed it until my pain reminded me I couldn’t wait any longer. It simply wasn’t working for me, and I knew addressing this was my top priority since I was seeing a new rheumatologist. I prepared for my first appointment by requesting information from my insurance regarding which specialty medications are preferred by my plan. Additionally, I wrote down which administration methods (injections, pills, infusions, etc) would be ideal and which one I could tolerate. 

When I met my new doctor, I explained my challenges and shared my preferences. From there, we had a thorough conversation about the options available for my type of arthritis. Because I’d already done my homework, our discussion was focused and productive. Additionally, knowing which medications my insurance would cover helped to guide this discussion and avoid later delays. Together, we decided to switch to a daily pill that I could take alongside my other medications. This switch has been life-changing. It’s improved my adherence, lowered my stress, and helped me feel more in control.

I believe my preparation ahead of time was most helpful for this overall process. By identifying what wasn’t working and having ideas about what might be better for me, I was confident and ready to fully participate in the decision-making process. Just as importantly, my doctor seriously considered the experience I was sharing.

I think it is also important to note that shared decision-making is an ongoing process. If this medication is not effective for my arthritis or if I come to find daily pills aren’t actually sustainable for me, this is certainly a discussion I will have with my doctor again. As a whole, this has had a dramatically positive impact on my life, and I recognize I am extremely fortunate to have a doctor who acknowledges and trusts my input.

Transitioning to adult care can feel intimidating, but shared decision-making can make it empowering. By preparing ahead of time and openly sharing your priorities, you can build a strong partnership with your doctor from the beginning of the relationship to find a treatment plan that truly works for you. To learn more about how you can utilize shared decision-making in your own care, check out our previous blog post!

Shared Decision-Making Event Recap

On August 6th, Young Patients’ AREA hosted our first event of the year, Choose Your Own Adventure: Making Health Choices 101. This webinar, led by council member Hayden, introduced shared decision-making, identified ways patients can introduce it into their own care, and shared personal experiences from council members Ela and Kelsey. Additionally, our team created pocket card resources for you to print and carry with you to your appointments to help facilitate shared decision-making conversations with your healthcare team! Below you will find a detailed summary of the event content. The complete recording can be found here.

What is Shared Decision-Making?

Shared decision-making happens when patients and their healthcare providers work together to make decisions about treatment that are informed by science, the patient’s history, and the patient’s values and preferences. This differs from healthcare models where healthcare providers make decisions for their patients, and simply prescribe treatment plans without much patient input.

An important part of shared decision-making is the conversation between healthcare providers and patients. This allows the medical team to inform the patient of relevant information regarding their treatment options and also allows the patient to inform their medical team about their treatment preferences. Collaboration ensures that the decision made positively impacts the patient’s health and daily living.

Shared decision-making is beneficial to many patients as it allows care teams to identify patients’ largest concerns and collaborate to identify solutions. This collaborative process helps improve patients’ healthcare experiences in and out of the clinic and facilitates positive visits and relationships. It also allows patients to have more freedom in directing the focus conversation during appointments. By identifying and selecting treatments that are most compatible with their lifestyle and preferences, patients generally have more positive perceptions toward their care and treatment.

Implementing Shared Decision-Making: Choice Talk, Option Talk, and Decision Talk

Elwyn et al. introduces the idea of Choice Talk, Option Talk, and Decision Talk to implement shared decision-making in healthcare settings.

Choice Talk is when you and your team identify available and reasonable treatment options. This type of conversation does not necessarily go in-depth about the treatment options, but instead provides a brief overview of the different options you can choose from and directions you can go with your treatment plan. During these conversations it may be helpful to write down all the options discussed with your care team, so you can reference them again at a later time and do further research into each option.

Option Talk is when you and your team discuss more detailed information about the treatment options discussed during Choice Talk. You may already have one or two preferred treatment options, but this is your opportunity to thoroughly understand each one and make sure your expectations surrounding the treatments are realistic. It is always helpful to ask questions about anything that is unclear, and to ask your team to repeat information so you can write it down and reference it later.

Decision Talk is when you consider your options and preferences to make a decision. This is the time to identify the variables that are most important to you. How often do you want to take medication? Is nausea a side-effect you absolutely cannot tolerate? Do you prefer infusions over injections? Or injections over pills? Consider your own preferences before making a final decision. Defer if you need to! It is perfectly reasonable to ask for more time to think about your options. It is sometimes helpful to discuss your options with someone you trust outside of the appointment.

Shared Decision-Making Pocket Card

We have created a pocket card resource for you to download and carry with you to your appointments to help facilitate shared decision-making conversations with your healthcare team. Click here to download and print the PDF, then bring it with you to your appointment for reference!

Final Reminders

We hope you’ll keep building these skills and using your voice in your healthcare journey. Whether you’re new to the concept or already practicing it, remember that you deserve to be heard and to have a say in your treatment decisions.

References

Elwyn, G. et al. (2012). Shared decision making: A model for clinical practice. Journal of General Internal Medicine, 27(10), 1361-1367. DOI: 10.1007/s11606-012-2077-6

World Hearing Day: My Experience with Profound Hearing Loss

If three years ago someone had told me March 4th was World Hearing Day, my response probably would have been something along the lines of “that’s cool I guess…” without truly caring. At that time I had a diagnosis of spondyloarthropathy (a form of arthritis), but that doesn’t affect your hearing, right? I wouldn’t know it until several months later, but my world was about to revolve around audiology, otolaryngologists, and neurotologist appointments. 

My experience with hearing loss has played a significant role in my becoming involved with YP AREA. It began one November morning as I was catching up on lectures from the week before. It was 2021 and I was a sophomore in college. Like most college students, my life revolved around school. Midterms were among us and my arthritis was giving me a very hard time like it had every fall, so I was feeling especially stressed. It was already 1 o’clock and I needed to rush off to make my 1:20 lecture across campus. I started to pack up my computer and notebook when, out of nowhere, I could only hear a static-like ringing in my left ear. At first, I thought I imagined it. I scurried out the door, thinking all was fine, but when I sat down for class, I knew all was in fact, not fine. I couldn’t hear a thing my professor was saying. I was in the front and he was standing on my left side, so it was pretty obvious to me that I truly could not hear anything from my left ear.

I called my parents after class who were equally as baffled as I was. My mom asked me seemingly endless questions trying to make sure I hadn’t had a stroke or seizure. I went home and played full volume music while holding my phone speaker directly up to my ear. Still silence. I was able to see a nurse practitioner at my school’s health center the following day who sent an urgent referral to ENT, whom I got an appointment with two days later.

“Profound sudden sensorineural hearing loss” is what they call it officially, but really, that just means you suddenly and completely lost your hearing with no explainable cause. My initial hearing threshold was 103 decibels. When referencing how well someone can hear, a lower decibel threshold means you can hear quieter sounds. Most people can hear sounds at 0 decibels. Whispering is about 40 decibels, regular speech is about 60 decibels, and concerts are about 100 decibels. In other words, this was about as bad as it could get. I was immediately started on the only known treatment for sudden sensorineural hearing loss: steroids. A week passed with no improvement, so I got steroid injections directly into my eardrum. This helped some in improving my hearing threshold, but I quickly reached the maximum dosing. By the time all was said and done, I had “recovered” to 70 decibels, but my speech recognition was only 15%. This means that even when things were loud enough for me to hear, my cochlea (the very inside of my ear) was still so damaged that I could not understand speech. Not even a high-powered hearing aid would allow me to hear.

A chart explaining decibel (db) levels from top to bottom listing loudest to softest. Fireworks are 140 db. A concert is 120 db. A subway train is 100 db. A note to the left states that 90 db is the OSHA limit for workplaces. 80 db is loud radio. 60 db is conversation. 40 db is rain. 20db is whispering. 0 db is silence.

The otolaryngologist I was seeing near my college campus then told me “I’ll follow up with you in three months if you still can’t hear.” Excuse me? I was just supposed to live like this for three months with absolutely no help? I was falling behind on my class because I couldn’t hear and had missed many classes for my appointments. My entire world was turned upside down. Most people do not understand the impact that only hearing out of one ear has on day to day life. I now use the motto “if I can’t see you, I can’t hear you” to assist in explaining how to make communication accessible to me. Having only one functioning ear meant I heard absolutely nothing unless the person speaking to me was on my right side. I entirely lost my ability to locate where a sound was coming from, and I could no longer filter out background noise. It was incredibly socially isolating, and I quickly found my mental health plummeting as I struggled both in school and in social settings as simple as watching a movie with friends. Along with that, I had people in my life making naive comments such as “but your other ear is fine, so it doesn’t really matter.” My only safe space was with my very closest friends, who were incredibly accommodating and went out of their way to make social activities as accessible as they could for me. Everywhere else, I was sad, frustrated, and generally going through a roller coaster of emotions knowing my life was never going to be the same.

Largely out of frustration with my situation and the lack of support I had received from my doctor, I looked up research about my condition and other treatment options. Surely there had to be something that would help me, right? I quickly learned there were special types of hearing devices that could be an option for me that hadn’t been presented by my first doctor. I made an appointment with a neuro-otologist near where my parents lived, and saw her over winter break. At my appointment, she was very realistic with me in saying that it was extremely unlikely my hearing would return. However, she also confirmed what I had read about! A special set of hearing aids or even a cochlear implant could be a good fit for me! Two months later, I got a special set of hearing aids called CROS (contralateral routing of signals). The hearing aid on my left ear picked sound up from my left side and put it into my right ear. This made me more aware of people speaking around me and lessened the need for awkward social repositioning, but I still struggled with terrible tinnitus, situations with background noise, and had no ability to locate where a noise was coming from.

Nine months later, after giving the CROS system a solid effort and giving myself time to focus on my mental health and adjust to such a large life change, I went back to my doctor and asked to try the cochlear implant. I’d read a ton of research myself and knew that many other people were having extremely good results with it, and it had recently gotten FDA approval for people like myself who were deaf in one ear. Cochlear implants are a much more involved option (requiring surgery), but it was the only thing that would allow me to sense sound out of my left ear.

On March 15, 2023, a year and a half after I first lost my hearing, I had cochlear implant surgery. Having surgery mid-semester made for an incredibly hectic time, but I have absolutely no regrets. Minus some minor issues related to my arthritis, surgery went very well and I had my implant “activated” (turned on) a month later. It’s not perfect and I still have some difficulties with background noise, but overall my quality of life has improved dramatically. I have significantly less anxiety surrounding social situations, and I really appreciate the ability to control the noise level so it doesn’t get too overwhelming. My tinnitus isn’t noticeable when I wear it and I have about 75% word recognition right now; this number will only improve as I have it longer and wear it more. Stay tuned on the YP AREA blog for more information about cochlear implants, but to sum it up, I can hear in my left ear!

If it weren’t for my own information seeking and advocacy, my life would look significantly different. My cochlear implant has helped me build confidence despite my hearing loss and challenges it comes with. My own ability to read and understand research using skills I learned in school put me on this path, but I realize not everybody has the time, resources, or skills necessary to truly understand or participate in research. That is exactly why I joined YP AREA: to help make research more accessible to young people who might otherwise be unable to access it.

So, happy World Hearing Day. I feel extremely grateful for my friends, family, and medical team who have helped me through one of the biggest challenges in my life. It took a significant amount of time and effort, but I’ve found my village, learned to advocate for myself, and learned a whole lot about hearing through this experience. Everybody’s experience with hearing loss is different, and there is no right or wrong way to react. Some will choose to proceed with hearing devices. Some will learn sign language. Others will do both. It’s an incredibly personal process, but ultimately, people with hearing loss deserve access to communication: that’s what is most important.