By Rebecca Gillett, MS OTR/L, Live Yes! With Arthritis Co-host and arthritis patient
When you live with arthritis, you know there are only so many things you can control when it comes to managing your disease. Often when the subject of diet and nutrition comes up as it relates to arthritis, there can be some very strong opinions and beliefs within our patient community. My co-host, Julie Eller, and I often say people like to turn to diets for managing arthritis for this very reason. We can’t control what our arthritis brings each day when we wake up, but we can certainly control the foods we eat. Continue reading Microbiome, Gut Health & Arthritis: Follow Your Gut?→
When I received an email inviting me to sign up for a Pfizer COVID-19 vaccine, I registered within minutes for a slot the very same day. My hands were shaking with excitement, even though I am absolutely terrified of needles. I chose to get vaccinated to protect myself as a 25-year-old immunocompromised woman with rheumatoid arthritis (RA). I chose to get vaccinated because I provide telehealth social work services to COVID-19 patients and families, and the memories of this experience will weigh heavily on me forever. I chose to get vaccinated because I spent a month visiting my father in the ICU in pre-COVID times, and I had the privilege of sitting next to him every day as he recovered from cardiac arrest, long before visitor restrictions became the new norm. Although immunocompromised people were not included in the initial vaccine clinical trials, I trust my rheumatologist, who gave me the OK to get the vaccine. I take a weekly biologic injection as well as methotrexate and prednisone, and I am aware that this means the vaccine may be slightly less effective for me. I chose to get vaccinated because I strongly believe that the benefits outweigh the risks, and I hope that you will too. Continue reading #WeLiveYes: Rachel’s COVID-19 Vaccine Journey→
As one of the five Arthritis Foundation Rheumatology Research Fellowship grant awardees for 2020, I have been fortunate to have had many opportunities to participate in research. I was excited not only to attend the American College of Rheumatology (ACR) virtual conference in November but honored to present some of the research I have been working on during my fellowship at Duke University. Continue reading Exciting Research in Rheumatology→
The Arthritis Foundation is your trusted source for information, and we’re staying on top of the latest arthritis-related news that could affect you. As we head into 2021, here’s a wrap-up of the headlines from this past month.
The American College of Rheumatology (ACR) has recognized several rheumatologists for their contributions and achievements in rheumatology. They have also been Champions of Yes for the Arthritis Foundation. The honors were announced recently during ACR’s annual meeting, which was virtual this year. Continue reading Honoring the Best in Rheumatology→
By Rebecca Gillett, MS OTR/L, Live Yes! With Arthritis Co-host and arthritis patient
Stress. Just the word itself can invoke the feeling. If you live with arthritis, you know there is a spectrum of stress-inducing triggers that might propel you into a flare of varying intensity. I am not just talking about the mental stress of living with a chronic disease, which is a huge factor, but also the physical stress you put your body through from the moment you slowly make your way out of bed. Everything we do, think and feel can take on a toll on our physical and emotional well-being, which then can affect our arthritis pain. Continue reading Mind Over Stress: Finding the Right Balance→
My name is Jessica Thomas and I was diagnosed in 2018 with ankylosing spondylitis (AS) and rheumatoid arthritis (RA). I tested positive for COVID-19 in August 2020, as did the rest of my immediate family, including my 16-year-old daughter, who has psoriatic arthritis. I believe it is very important to share my story with others who have rheumatic diseases and take immunosuppressant medications.
Aug. 20, 2020, turned out to be an important day. I hadn’t felt great when I went to bed the night before, and I woke up that Thursday morning with a headache that stretched from my eyebrows to the middle of my back. It felt like a knife was under my right shoulder blade twisting into my lung. I assumed it was a horrible arthritis flare. COVID-19 didn’t even cross my mind. I had no fever or cough.
I called in sick to work and was in bed all day. I could barely lift my head off the pillow, and I was exhausted. None of the pain medications I normally use for my arthritis could break the clenching pain. I took Tylenol, ibuprofen, gabapentin and diclofenac. (Additionally, I receive a biologic infusion every eight weeks. My daughter is also on a biologic medication.)
When my family looks back, we each see this week differently. My daughter, Gabby Lepore, remembers her allergies bothering her. None of us had much of an appetite.We were tired, but we are a busy family so this wasn’t unusual.
As someone with an autoimmune disease, I am very in tune with the fact thatonedayImightfeelterrible,butthe next day I am fine. I was really expecting this horrible migraine to go away and that I would be back on my feet the nextday.
On Friday, Aug. 21, Gabby and my 12-year-old son, Anthony Lepore, were at their dad’s house. Gabby called me to say Anthony was not feeling well and had a low–grade fever. He remembers feeling suddenly very hot and just wanting to sleep, buthe has very little recollection of that weekend. Gabby continued to check his temperature, which was up to 104 that afternoon.
My ex-husband left work and took the kids to the Illinois Department of Public Health free testing center. I wasn’t feeling great, but I was better than the day before, so I figured we were getting seasonal allergies or colds. At this point, my daughter and her father were largely asymptomatic.
I felt much better over the weekend — tired, but nothing out of the ordinary for someone with autoimmune diseases. On Monday, my ex-husband called to inform me that they all received positive test results. I realized that I needed to get tested quickly. I went to four locations in my town and in Chicago — about 30 minutes away — before I finally found a drug store that would give me a test.
This was a Monday. I did not receive my results until Friday morning. I quarantined all week, but by the time the results came, I was very sick.
My son, who had areally highfever and cough, bounced back in about a week. My husband and ex-husband had just mild, allergy-like symptoms. And my daughter felt run-down, but it wasn’t until about three weeks later, when she went back to playing ice hockey, that she had a really bad bout of asthma symptoms.Gabby woke up one night struggling to breathe and landed in the emergency room. She ultimately had to increase her asthma medication, but she recovered within a few weeks.
For me, the darkest days were daysseven through 21. I never had a fever or cough, but I am convinced I had every other possible symptom. My head was in so much pain and it radiated around my skull and down my neck and back. Lifting my head would make me so dizzy that I vomited onafewoccasions.IalsosufferedotherhorribleGIissuesthatkeptmeupatnight and lying in the bathroom during the day. I passed out twice from pain.
On two different occasions I had a gallbladder attack. I had had a kidney stone in 2019 and that area suddenly ached again. My throat was sore and my head was tender to the touch and burned inside. My muscles ached, my joints hurt and I had horrible chills and night sweats. Around day seven, I lost my taste and smell. I often felt like a knife was stabbing under my right shoulder blade. I have since learned that could have been lung–related, but thankfully I had ordered a pulse-oximeter to monitor my oxygen levels, and they remained normal.
This was an incredibly difficult time because we all were sick. I had to take about six days off of work and returned by working half days because anything beyond that was unmanageable.My vision was impacted. I was exhausted. When one symptom eased up, another one came along and knocked me off my feet. I took a course of prednisone at one point that had absolutely no effect.
My symptoms were heavily neurological. At six weeks, I was still having daily headaches that were really debilitating. I couldn’t sleep, had a lot of brain fog and still no sense of taste or smell. My doctor gave me Topamax, which initially helped the headaches but then they came back with a vengeance. I also had phantom smells — it constantly smelled like a burning building, which made it hard to breathe.
My doctors were out of suggestions, so I finally went to the emergency room. Interestingly, nothing I told them seemed unusual. There aren’t any standard treatments for COVID-19, but the ER doctor prescribed treatments that have worked for some other patients, she said.
They put tubes up my nostrils and dripped lidocaine to numb the nerves and ease the headaches. The doctor took me off the Topamax and gave me aToradolinjection, and she also got me an appointment the next week with a neurologist, who put me on a different medication. (All the while, my daughter and I continued our medications for arthritis, which remained under control.)
One hard part of catching a “novel virus” is that everything a doctor does is experimental. COVID-19 impacts everyone differently, so treatments vary greatly from patient to patient. An advantage of having a chronic illness is that it has given me experience advocating for myself and my family, which has helped in getting treatment for COVID-19 symptoms. But it’s not like you can call your doctor and get a medicine for it. The therapeutics we hear about in the news are saving lives of the sickest people in hospitals. Until I got help in the emergency room, I mostly relied on ibuprofen and other over-the-counter meds.
It’s been more than three months since I tested positive and I still have limited taste and smell. The neurologist ordered an MRI that showed findings consistent with patients with chronic migraines — a new chronic illness for me. Thankfully, after what feels like a long road, the headaches and phantom smells have diminished, and I slowly feel as though I am returning to myself again.
Visit our Care & Connect pagesto learn how to best protect yourself and what to do if you suspect you have COVID-19. If you’vetested positive for COVID-19, share your experiences with others in our Live Yes Community.
In February 2020, 10-year-old Esmee Guerrero (who is now 11) wrote the following essay for her 5th grade class assignment. She wanted to help classmates understand what living with juvenile arthritis is like. Esmee lives in California, was diagnosed with JA at age 6 and is passionate about conquering arthritis. If you’re not already with us, her thoughts may inspire you to join this growing movement.Continue reading “I want to find a cure for arthritis. Don’t you?”→
By Cheryl Crow, patient advocate and occupational therapist
My name is Cheryl Crow, and I am an occupational therapist (OT) who has lived with rheumatoid arthritis (RA) for 18 years.
In early November, I was honored to attend the annual American College of Rheumatology’s virtual conference as both a speaker and an attendee. Along with fellow patient and health care provider Courtney Wells, PhD, a social worker and instructor, and fellow RA patient, Mariah Leach. creator of Mamas Facing Forward, I presented during the session, “Reproductive Health: Meet Women’s Needs.”
During our session, we shared research on how many women with rheumatic diseases lack sufficient education and support during their reproductive and parenting experiences, and we proposed some potential solutions. My presentation focused on how to “Address Postpartum Needs of Women with Rheumatic Diseases: Practical Tips From an OT.”
“It was really powerful to share my best tips and tricks from my training and my personal experiences — I even got to share cute baby pictures of my son, Charlie, to illustrate my points!”
The best part was seeing the responses in the “chat” box during the session, as well as on social media afterward. For example, Megan Clowse, MD, MPH, associate professor at Duke University wrote: “This has been a terrific session and the highlight of the meeting for me. Thank you so much for doing this and for all of your work.” Dr. Berquist wrote: “I’ve never thought about referring my arthritis patients to OT during the post-partum period. It makes sense.” Dr. Edens shared: “Thank you for highlighting the importance of involving patients in their care and addressing the many aspects of reproductive health in rheumatic diseases.”
My session was not the only one that highlighted the patient perspective. I was blown away by another session, “Patient Perspectives,” particularly when patient Elisabeth Abeson shared her “Integrative Approach to Managing Rheumatoid Arthritis (RA): Healing the Body, Mind & Spirit.” Abeson described how her journey to find the best healing tools for her rheumatoid arthritis has taken her around the world! She also shared the importance of art therapy and meaningful social connections at patient support groups.
Additionally, I found one of the keynote lectures, “Empowering Patients to Make an Impact on the Future of Healthcare,” by Jen Horonjeff, PhD, very powerful. She is a juvenile idiopathic arthritis (JIA) patient who has formed Savvy Co-Op, which empowers people to use their patient experiences to improve health innovations. She passionately articulated the importance of truly listening to patients to help them improve larger systems — not just the quality of their own care.
Another highlight was a study group session: “Developing Disease-Specific Patient Support & Education Programs,” by Hospital for Specialty Surgery social workers Adena Batterman, LCSW, MSW; Roberta Horton, LCSW, ACSW; Jillian Rose, PhD, LCSW, MPH; and Joan Westreich, LCSW, plus a complementary session, ”Patient Education: Team Up to Optimize Outcomes,” by Jillian Rose, PhD, MPH, LMSW; Mwidimi Ndosi, PhD, MSc, BSc (Hons), PgCert, RN; and Sandra Mintz, MSN, RN-BC. Both sessions highlighted the importance of deep and meaningful patient-provider partnerships in all aspects of rheumatology care.
Lastly, I was very moved and excited to hear a session about how to “Help Patients Navigate Online Support & Social Media,” particularly the sub-talk, “Your Digital Patients: Patient-Centered Social Media,” by Jilaine Berquist, MD, of SSM Dean Medical Group. Dr. Berquist had a very balanced view about the fact that disease-specific social media communities are an important source of support for many patients, but she also provided advice for how to avoid common downsides of social media, including lack of quality control for information shared.
It was an honor to attend this virtual conference and help elevate the voice of both patients with rheumatic diseases and the role that occupational therapy can play in helping patients manage complex diseases.