Katherine
Patient-to-patient topic:
Dry eyes and Sjögren's.
What do you wish you knew when first dealing with this symptom/situation?:
Don't base everything on bloodwork. I had a positive ANA but I was seronegative on some of the blood tests associated with Sjögren's. My first rheumatologist was dismissive, but I knew my body and I could tell something was wrong. Don't second guess yourself. If you feel like something is wrong, listen to your body and find a doctor that listens to you. My second rheumatologist not only found that I have Sjögren's (through a positive lip biopsy and Schirmer test), but he also put me through a series of other tests and discovered that I have Lupus, Dermatomyositis and two forms of Dysautonomia. If I had listened to my first rheumatologist, and didn't get a second opinion, I would be in a lot worse shape today. Thankfully, I have been able to get on the right course of medications and I'm doing much better than I was a few years ago.
What are the top 3 over-the-counter products or tools you use when dealing with this symptom/situation?:
Refresh Optive Mega-3 preservative free lubricant eye drops, Systane Nighttime Ointment (just be careful if you are someone who wakes up at night to go to the bathroom, the ointment can make your vision blurry), and Eye Eco goggles.
What is your best advice for another patient dealing with this symptom/ situation?:
Get punctal plugs for your eyes. I have almost no tear production and the plugs have really helped my eyes to keep some of their natural moisture.
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.:
When I first got diagnosed, my ophthalmologist said my eyes were so dry that it looked like someone had taken sandpaper and scratched up my corneas. It felt like I had grains of sand stuck in my eyes and everything was painful and blurry. My eyes were always red and when I would wake up, my lids would be stuck to my eyes. Using Restasis, Loteprednol Etabonate drops daily along with having punctal plugs in both my top and bottom lids has really made a big difference. I also use preservative free eye lubricant drops throughout the day which also helps. Keep trying different medications and/or products until you find ones that work best for you.
Please finish the following sentence: "Sjögren's has taught me...":
How to pace myself so that I have energy to do the things that are really important. How to be more present in life and grateful for the people who love and support me.
What are your most difficult symptoms?:
Peripheral and Autonomic Neuropathy, fatigue, extremely dry eyes and mouth, inflammatory arthritis, and motility issues.
How has Sjögren's impacted your life (either physically, emotionally, financially)?:
The fatigue has been debilitating. I was a former Division I swimmer and have always been an active person. Having to slow down and eliminate activities that I used to enjoy because I don't have the energy, or because of pain, has been an adjustment. Losing people who I thought were my friends because they were emotionally dismissive and didn't understand my limitations was initially quite painful. However, at the same time it showed me who and what is really important in my life.
How do you effectively cope with the complexity of symptoms?:
In all honesty, it's a struggle. I try to take things a day at a time and not get ahead of myself thinking about "what ifs." I have a great team of doctors who monitor me closely and intervene when my symptoms get worse. I also have an incredibly supportive partner, Daniel, who goes with me to all my appointments and takes notes for me. His help and trying to maintain a positive attitude, have been essential tools in helping me get through the difficult times.
What do you wish people knew about your Sjögren’s?:
Even though on the outside I look like healthy, Sjögren's can be debilitating. It is much more than just dry eyes and dry mouth. Virtually every part of my body has been impacted in some way by this disease.
How do you incorporate self-care with managing Sjögren's?:
I am a psychotherapist, so having good coping skills has been a real asset since getting diagnosed. I pick and choose where to extend my limited energy and try to focus on things that spark joy and fill me up. I take walks in nature, have a daily mindfulness and meditation practice, I do Pilates and other low impact physical activities, and I try to focus on the things that make me smile instead of what hurts.
What is your go-to Sjögren's product?:
Refresh optive mega-3 preservative free lubricant eye drops and sugar free lemon drops
What’s your best Sjögren’s tip?:
Get punctal plugs! They are so helpful!
Katherine
Patient-to-patient topic:
Dry eyes and Sjögren's.
What do you wish you knew when first dealing with this symptom/situation?:
Don't base everything on bloodwork. I had a positive ANA but I was seronegative on some of the blood tests associated with Sjögren's. My first rheumatologist was dismissive, but I knew my body and I could tell something was wrong. Don't second guess yourself. If you feel like something is wrong, listen to your body and find a doctor that listens to you. My second rheumatologist not only found that I have Sjögren's (through a positive lip biopsy and Schirmer test), but he also put me through a series of other tests and discovered that I have Lupus, Dermatomyositis and two forms of Dysautonomia. If I had listened to my first rheumatologist, and didn't get a second opinion, I would be in a lot worse shape today. Thankfully, I have been able to get on the right course of medications and I'm doing much better than I was a few years ago.
What are the top 3 over-the-counter products or tools you use when dealing with this symptom/situation?:
Refresh Optive Mega-3 preservative free lubricant eye drops, Systane Nighttime Ointment (just be careful if you are someone who wakes up at night to go to the bathroom, the ointment can make your vision blurry), and Eye Eco goggles.
What is your best advice for another patient dealing with this symptom/ situation?:
Get punctal plugs for your eyes. I have almost no tear production and the plugs have really helped my eyes to keep some of their natural moisture.
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.:
When I first got diagnosed, my ophthalmologist said my eyes were so dry that it looked like someone had taken sandpaper and scratched up my corneas. It felt like I had grains of sand stuck in my eyes and everything was painful and blurry. My eyes were always red and when I would wake up, my lids would be stuck to my eyes. Using Restasis, Loteprednol Etabonate drops daily along with having punctal plugs in both my top and bottom lids has really made a big difference. I also use preservative free eye lubricant drops throughout the day which also helps. Keep trying different medications and/or products until you find ones that work best for you.
Please finish the following sentence: "Sjögren's has taught me...":
How to pace myself so that I have energy to do the things that are really important. How to be more present in life and grateful for the people who love and support me.
What are your most difficult symptoms?:
Peripheral and Autonomic Neuropathy, fatigue, extremely dry eyes and mouth, inflammatory arthritis, and motility issues.
How has Sjögren's impacted your life (either physically, emotionally, financially)?:
The fatigue has been debilitating. I was a former Division I swimmer and have always been an active person. Having to slow down and eliminate activities that I used to enjoy because I don't have the energy, or because of pain, has been an adjustment. Losing people who I thought were my friends because they were emotionally dismissive and didn't understand my limitations was initially quite painful. However, at the same time it showed me who and what is really important in my life.
How do you effectively cope with the complexity of symptoms?:
In all honesty, it's a struggle. I try to take things a day at a time and not get ahead of myself thinking about "what ifs." I have a great team of doctors who monitor me closely and intervene when my symptoms get worse. I also have an incredibly supportive partner, Daniel, who goes with me to all my appointments and takes notes for me. His help and trying to maintain a positive attitude, have been essential tools in helping me get through the difficult times.
What do you wish people knew about your Sjögren’s?:
Even though on the outside I look like healthy, Sjögren's can be debilitating. It is much more than just dry eyes and dry mouth. Virtually every part of my body has been impacted in some way by this disease.
How do you incorporate self-care with managing Sjögren's?:
I am a psychotherapist, so having good coping skills has been a real asset since getting diagnosed. I pick and choose where to extend my limited energy and try to focus on things that spark joy and fill me up. I take walks in nature, have a daily mindfulness and meditation practice, I do Pilates and other low impact physical activities, and I try to focus on the things that make me smile instead of what hurts.
What is your go-to Sjögren's product?:
Refresh optive mega-3 preservative free lubricant eye drops and sugar free lemon drops
What’s your best Sjögren’s tip?:
Get punctal plugs! They are so helpful!