Jenny
Patient-to-patient topic:
Being a Medical Student with Sjögren's
What do you wish you knew when first dealing with this symptom/situation?
I wish I knew that Sjögren's could apply to young people in their mid-20's so that I could have been diagnosed even earlier. In my first year of medical school I remember learning about Sjögren's and how this mainly affected women in their 40's-60's. Certainly that wouldn't apply to a then 25-year-old... After the diagnosis was made at 26 years old by my inquisitive primary care physician, my quality of life drastically improved with my Sjögren's health regimen.
What are the top 3 over-the-counter products or tools you use when dealing with this symptom/situation?
1. Allday mouth spray
2. XyliMelts in the mouth at night
3. Ivizia preservative-free eye drops
What is your best advice for another patient dealing with this symptom/ situation?
Keep eye drops, chapstick, and saliva-inducing mints with you in your white coat and/or scrub pockets. The clinic and hospital air is excessively dry and dramatically worsens dry eyes and mouth. Learning to stay on top of this with consistent application of eye and mouth drops can significantly lessen the burden of disease.
In a few short sentences, please tell us your story with this symptom and anything additional for advice for another patient going through something similar.
While starting medical school at 25 years old, I dealt with the symptoms of parotid swelling, dry painful eyes, and dry mouth for about 5-6 years leading up. As a first year medical student, I remember learning about Sjögren's and that it affected women later on in life. Even though I was aware of the symptoms and how similar they were to mine, I didn't give it any thought due to my age. In my second year of medical school I went to my primary care physician asking for a referral to an otorhinolaryngologists because my parotid glands were becoming painful and swollen on a daily basis. Before she referred me, she asked about my Sjögren's symptoms, ran some blood tests, and sure enough, I was blaringly positive for all the rheumatological markers. I subsequently had a salivary gland biopsy and this confirmed the diagnosis. From there, I was set up with a rheumatologist and ophthalmologist who put me on the regimen I'm on today. I was also told to browse the Sjögren's Foundation website to research other ways to alleviate my symptoms. Learning the ways in which other's survive their symptoms has drastically improved my quality of life. I thank my doctors and the Sjögren's Foundation for brining awareness to this diagnosis and telling the stories beyond just the dry eyes and dry mouth. This disease is so much more than that. If you're a student struggling with this, just know you are not alone. Though you cannot completely rid the pain, and that the circumstances of education can exacerbate the symptoms, know there are many things you can do (ie: medications, over the counter products, and lifestyle modifications) to diminish their affect on you.
Please finish the following sentence: "Sjögren's has taught me..."
Sjögren's has taught me how to have more patience with myself while my body is hurting. Often times there is not much to do when a flare comes around other than soothing myself in the ways I have learned (ie: eye drops, parotid massages, cold and warm compresses over the glands and eyes and joints). Sometimes it can be very frustrating, but learning to be patient and understand the disease process is crucial to surviving and remaining positive!
What are your most difficult symptoms?
My most difficult symptoms are my dry eyes, as this is my most difficult to control. I'm currently a third year medical student which means I'm often looking at computer screens or confined to dry hospital air which often exacerbates the pain.
How has Sjögren's impacted your life (either physically, emotionally, financially)?
Sjögren's has impacted my life in a variety of ways. First off, I have always been an avid distance runner and weight lifter the majority of my life. While on a run, the dryness in my mouth can be so bad that it makes it hard to swallow anything (including electrolyte packets/drinks, water, saliva...), occasionally the dryness makes it difficult to breathe on a run. Occasionally I experience joint pains in my knees and hips which means I must listen to my body and modify my level of activity. Emotionally, Sjögren's can be difficult to deal with on a day-to-day basis, however the physical symptoms far outweigh the emotional toll. Financially, Sjögren's is expensive. For instance, the constant purchasing of daily and nightly eye drops, ointments, and soothing measures racks up. As a third year medical student, I've been in different medical specialty rotations all year. The hospital and operating room air is intentionally dry and brutal to the eyes. Can't tell you how many comments I got on my "blood-shot eyes" or been asked "have you been crying? your eyes are all red and swollen." I always just respond that my eyes are chronically dry and keep it moving without diving into an explanation. However, keeping eye drops in my scrub pockets at all times has been a life saver. Knowing how much my eyes will be in pain from the hospital while in future residency training, I'm soon being fitted for hydrating scleral lenses which cost almost $1,000. Furthermore, the years of dental work are very costly... before my diagnosis I had no idea why I kept getting cavities... all thanks to Sjögren's.
How do you effectively cope with the complexity of symptoms?
I see my family physician, rheumatologist, and ophthalmologist who have really taken great care of me. I check in every 4-6 months and they are on top of all my symptoms. Also, I keep eye drops, chap stick, and my Cevimeline on me at all times. This is CRUCIAL to surviving each day.
What do you wish people knew about your Sjögren’s?
I wish people knew that it doesn't have to take years for a diagnosis! I came to my primary care physician with the only complaint of jaw swelling thinking I needed to go to an otorhinolaryngologist for further evaluation. Little did I know that she would pick up on this and ask me about the other signs and symptoms of Sjögren's, which I certainly had but didn't think were worth mentioning at the time... Even though the dryness was majorly impactful in my health, I didn't think it was a sign of anything besides just being dehydrated (for years I carried around a 40 oz water bottle with me every second of my life and refilled about 4-5 times daily...) I wish that people knew more about the physical signs and symptoms that Sjögren's patients deal with so that they can look for them in themselves and talk to their doctors to improve their quality of life.
How do you incorporate self-care with managing Sjögren's?
I incorporate mindfulness and gratitude for the positives in my life, especially during flares. I'm also very cognizant about listening to my body and what my limitations may be on a particular day. Whether it means lifting lighter, slowing from a run to a walk, or remembering to blink...all these things to be mindful of help me get through each day.
What is your go-to Sjögren's product?
Ivizia eye drops and Allday mouth saliva-inducing mouth spray.
What’s your best Sjögren’s tip?
Floss every single day and brush your teeth multiple times to get ahead of your dental hygiene and avoid cavities!
Jenny
Patient-to-patient topic:
Being a Medical Student with Sjögren's
What do you wish you knew when first dealing with this symptom/situation?
I wish I knew that Sjögren's could apply to young people in their mid-20's so that I could have been diagnosed even earlier. In my first year of medical school I remember learning about Sjögren's and how this mainly affected women in their 40's-60's. Certainly that wouldn't apply to a then 25-year-old... After the diagnosis was made at 26 years old by my inquisitive primary care physician, my quality of life drastically improved with my Sjögren's health regimen.
What are the top 3 over-the-counter products or tools you use when dealing with this symptom/situation?
1. Allday mouth spray
2. XyliMelts in the mouth at night
3. Ivizia preservative-free eye drops
What is your best advice for another patient dealing with this symptom/ situation?
Keep eye drops, chapstick, and saliva-inducing mints with you in your white coat and/or scrub pockets. The clinic and hospital air is excessively dry and dramatically worsens dry eyes and mouth. Learning to stay on top of this with consistent application of eye and mouth drops can significantly lessen the burden of disease.
In a few short sentences, please tell us your story with this symptom and anything additional for advice for another patient going through something similar.
While starting medical school at 25 years old, I dealt with the symptoms of parotid swelling, dry painful eyes, and dry mouth for about 5-6 years leading up. As a first year medical student, I remember learning about Sjögren's and that it affected women later on in life. Even though I was aware of the symptoms and how similar they were to mine, I didn't give it any thought due to my age. In my second year of medical school I went to my primary care physician asking for a referral to an otorhinolaryngologists because my parotid glands were becoming painful and swollen on a daily basis. Before she referred me, she asked about my Sjögren's symptoms, ran some blood tests, and sure enough, I was blaringly positive for all the rheumatological markers. I subsequently had a salivary gland biopsy and this confirmed the diagnosis. From there, I was set up with a rheumatologist and ophthalmologist who put me on the regimen I'm on today. I was also told to browse the Sjögren's Foundation website to research other ways to alleviate my symptoms. Learning the ways in which other's survive their symptoms has drastically improved my quality of life. I thank my doctors and the Sjögren's Foundation for brining awareness to this diagnosis and telling the stories beyond just the dry eyes and dry mouth. This disease is so much more than that. If you're a student struggling with this, just know you are not alone. Though you cannot completely rid the pain, and that the circumstances of education can exacerbate the symptoms, know there are many things you can do (ie: medications, over the counter products, and lifestyle modifications) to diminish their affect on you.
Please finish the following sentence: "Sjögren's has taught me..."
Sjögren's has taught me how to have more patience with myself while my body is hurting. Often times there is not much to do when a flare comes around other than soothing myself in the ways I have learned (ie: eye drops, parotid massages, cold and warm compresses over the glands and eyes and joints). Sometimes it can be very frustrating, but learning to be patient and understand the disease process is crucial to surviving and remaining positive!
What are your most difficult symptoms?
My most difficult symptoms are my dry eyes, as this is my most difficult to control. I'm currently a third year medical student which means I'm often looking at computer screens or confined to dry hospital air which often exacerbates the pain.
How has Sjögren's impacted your life (either physically, emotionally, financially)?
Sjögren's has impacted my life in a variety of ways. First off, I have always been an avid distance runner and weight lifter the majority of my life. While on a run, the dryness in my mouth can be so bad that it makes it hard to swallow anything (including electrolyte packets/drinks, water, saliva...), occasionally the dryness makes it difficult to breathe on a run. Occasionally I experience joint pains in my knees and hips which means I must listen to my body and modify my level of activity. Emotionally, Sjögren's can be difficult to deal with on a day-to-day basis, however the physical symptoms far outweigh the emotional toll. Financially, Sjögren's is expensive. For instance, the constant purchasing of daily and nightly eye drops, ointments, and soothing measures racks up. As a third year medical student, I've been in different medical specialty rotations all year. The hospital and operating room air is intentionally dry and brutal to the eyes. Can't tell you how many comments I got on my "blood-shot eyes" or been asked "have you been crying? your eyes are all red and swollen." I always just respond that my eyes are chronically dry and keep it moving without diving into an explanation. However, keeping eye drops in my scrub pockets at all times has been a life saver. Knowing how much my eyes will be in pain from the hospital while in future residency training, I'm soon being fitted for hydrating scleral lenses which cost almost $1,000. Furthermore, the years of dental work are very costly... before my diagnosis I had no idea why I kept getting cavities... all thanks to Sjögren's.
How do you effectively cope with the complexity of symptoms?
I see my family physician, rheumatologist, and ophthalmologist who have really taken great care of me. I check in every 4-6 months and they are on top of all my symptoms. Also, I keep eye drops, chap stick, and my Cevimeline on me at all times. This is CRUCIAL to surviving each day.
What do you wish people knew about your Sjögren’s?
I wish people knew that it doesn't have to take years for a diagnosis! I came to my primary care physician with the only complaint of jaw swelling thinking I needed to go to an otorhinolaryngologist for further evaluation. Little did I know that she would pick up on this and ask me about the other signs and symptoms of Sjögren's, which I certainly had but didn't think were worth mentioning at the time... Even though the dryness was majorly impactful in my health, I didn't think it was a sign of anything besides just being dehydrated (for years I carried around a 40 oz water bottle with me every second of my life and refilled about 4-5 times daily...) I wish that people knew more about the physical signs and symptoms that Sjögren's patients deal with so that they can look for them in themselves and talk to their doctors to improve their quality of life.
How do you incorporate self-care with managing Sjögren's?
I incorporate mindfulness and gratitude for the positives in my life, especially during flares. I'm also very cognizant about listening to my body and what my limitations may be on a particular day. Whether it means lifting lighter, slowing from a run to a walk, or remembering to blink...all these things to be mindful of help me get through each day.
What is your go-to Sjögren's product?
Ivizia eye drops and Allday mouth saliva-inducing mouth spray.
What’s your best Sjögren’s tip?
Floss every single day and brush your teeth multiple times to get ahead of your dental hygiene and avoid cavities!