The Virtual Youth Panel event is now available for viewing on Youtube and IGTV. You’ll find timestamps of the video on Youtube to direct you to the questions/answers you’ll want to hear the most. This is an excellent resource to share with relatives, friends, sports coaches and teachers to help them understand life with rheumatic disease.

We weren’t able to get to all of the questions during the live event so we followed up with panelists, Kelsey and Graeme to get you the answers – see below! In this post-event interview, Kelsey and Graeme dive deep into pain management tips, their thoughts on telemedicine/virtual appointments, and juggling school and work with active arthritis.

Kelsey Chomistek

Graeme Zinck

Q: Have you had a virtual telemedicine visit and if so, what was the experience like? What could be improved?

Kelsey: I’ve only had telephone appointments and they were all positive! There were zero wait times, I had the full attention of my physician, and my concerns were quickly resolved. I would actually like to see this continue to decrease the time appointments take. It would be beneficial for physicians to continue to follow-up with test results or other information via the phone instead of making patients come in.

Graeme: I’ve only had one telephone visit since COVID-19 started. It was really nice to be able to instantly chat with my physician (no commuting back and forth, which for me is 2 hours each way) and chat. Sometimes I felt rushed because of the nature of telephone calls but I wasn’t particularly concerned about my doctor missing physical symptoms because at this point, I can recognize and articulate them myself. When we switched the dosage of my medication, it was nice to know I would be able to call if things changed.

Q: Do either of you live with frequent illness or infections due to immune suppression? If so, how do you cope with numerous missed days at school, social/ extracurricular events, and work due to illness & medical appointments?

Kelsey: Yes! I experience frequent infections due to immune suppression (e.g. steroids and biologics). Because of this, I also have frequent and unplanned walk-in clinic/family doctor and urgent care/ER visits. This also means increased visits to the pharmacy. 

It can be very difficult to manage because it is always unexpected. To cope with this, I make sure I stay on top of my school schedule (aka don’t procrastinate) to help prepare for unexpected events. In addition, my job is aware of my chronic disease and due to my casual position I am able to cancel my shift without consequences; however, I do not receive sick time. I have a large number of school absences and work absenteeism in a year. Communication is very important in all areas of my life.

Graeme: I do not have problems for the most part with my methotrexate drug regiment. That being said when I get sick, I tend to stay sick for longer than my peers. So echoing Kelsey’s advice, it is important to stay on top of my work so I can feasibly miss a week. I find I am more likely to get sick and stay sick when I am under high stress or have less sleep, so I need to keep a very strict sleep schedule to stay healthy. Meditation also helps keep my stress levels in check.

Q: Have any of you taken medication for anxiety and/or depression? If so is/was it helpful?

Answered anonymously: Yes, I have been on an anti-anxiety medication for nearly 3 years. I find it helps me greatly; I feel more stable and have more control over my thoughts and feelings. That said, getting enough sleep, a healthy diet, exercise, meditation, journaling, and counselling have had a significant impact on my energy levels and my emotional well-being. Though there are times where I have a bad day (or week) and drop the ball on practicing these things and fall back on my medication to really keep me balanced, I like to look at each of these as a piece of the puzzle or a packaged deal. Each one helps the other to make me feel better and stronger. 

There are so many different kinds of anxiety and depression medications. Make sure you talk to your doctor about which one is right for you! It can take a while to get matched with the correct one and the correct dosage – don’t be discouraged by this, but definitely keep an open line of communication with your doctor. 

Q: How do you cope with immune suppression on a crowded campus, and living in residence or with roommates?

Kelsey: I live with roommates (I’ve actually never lived on campus). I approached it by having a conversation with them about being immunosuppressed and my risk of infection, especially during COVID-19. I stress the importance of frequent hand washing when they are sick and have this conversation BEFORE they are sick so they do not feel guilty. I also ask them to get the flu vaccine and remind them that they cannot get the nasal vaccine. My roommates have been very supportive thus far 🙂

Graeme: I have been lucky—for the most part, my immune system is good enough that I am fine with living with others as long as I give my body the best possible conditions (eating well, sleeping 9h/night, managing stress).

Q: Does anyone else get appointment fatigue or feel ‘over-doctored’ ? What self-care steps do you take to handle physical and mental strain?

Kelsey: Yes! I had approximately 100 appointments last year. When I am reaching a point of appointment fatigue I try to give myself a month off of appointments to regroup. In addition, I frequently combine my appointments on the same day/week/month to try to allow time in the year when I am not having appointments. However, there are still some appointments that I am required to go to monthly and unexpected appointments for infections/joint injections etc. Going on vacation is very important to get away from appointments! Physically remove yourself from the possibility. 🙂 

Q: Can you summarize your best strategies dealing with pain management?

Kelsey: Getting enough sleep (usually 9 hours), going to bed early and at the same time each night, exercising, “pacing myself” (e.g. only working out for ‘X’ amount of time and stopping when I am in pain, picking appropriate sports/exercises, medication compliance)

Graeme: All of the things Kelsey mentioned! Also, when I’m in pain, I use a hot or cold pack on affected joints — I used to go to bed with one every night to get to sleep. I also make sure I do a physical warmup every morning: ten minutes of stretches focusing on flexibility helps me feel in control of my body throughout the day.

Q: What age did you transition to doing your own injections? How did you get over the fear of it?

Kelsey: I did my own injections from the moment I was diagnosed at age 14. I personally felt like this increased my independence and allowed me to travel, go to sleepovers etc. without concern for managing my medications.

Graeme: I started self-injecting methotrexate when I was 16, after 9 months in remission without any medication. The struggle was twofold: one, there was the idea of sticking a sharp object into my body and two, learning how to give myself injections meant facing the fact that I wasn’t well, and I would not be getting better for the foreseeable future. 

My rheumatologist arranged appointments with a couple of nurses to help practice. We started on stress balls, which helped with the mechanics of using the syringe and needle. Then, I would go in every week and get feedback from them while I injected myself. Because I had to focus on the pain of the needle and the task at hand, I found it easier to distract myself from the nausea I associated with the medication. 

That’s another thing: I found it hard to inject myself because there’s that initial pain when the needle goes in, and my reaction was to instantly pop the needle back out! Then I had to restart. I got in the habit of going slowly — I would take 5-10 seconds to get the needle in (my Dad used to take half a second). 

Self-injecting ultimately made it easier for me to manage my stress and nausea for methotrexate because I had to focus when I took it and I was in control.

Q: Has anyone on the panel been on Enbrel injections?

Kelsey: I was on Enbrel when I was first diagnosed. It was administered through subcutaneous injection (subq). I experienced no side effects related with Enbrel. That said, everyone experiences different side effects. I found that subq administration was easier to manage than IV, which I started doing at age 15. 

Q: Has anyone on the panel takem biological medicines? Can they share their experiences, side effects, and other anxieties they may have experienced before deciding to choose biologics?

Kelsey: I did not personally experience side effects for the majority of (the many) biologics that have taken but I did have a reaction to Intravenous immunoglobulin (IVIG). That said, the biggest complication was that I experienced increased infections. 

When I was first diagnosed the concept of starting a biologic and unknown long-term side effects was scary; however, after 10 years I recognize that the benefit of being on biologic medication outweighs the potential risks of not (this is a personal preference). For me, my immediate quality of life and protecting potential disease complications (e.g. joint damage) is most important especially with my joint damage.