Lisa
Patient-to-patient topic:
Interstitial Cystitis - bladder pain
What do you wish you knew when first dealing with this symptom/situation?:
I wish I knew this was related to my Sjögren’s. It took a few specialists to get confirmation and to learn that will be a lifelong issue.
What are the top 3 over-the-counter products or tools you use when dealing with this symptom/situation?:
I take a daily prescription medicine called Myrbetriq and also get instillations as needed. Instillations are a combination of medicines injected into your bladder through a catheter. The meds are steroids, blood thinner and lidocaine, all to reduce irritation and inflammation inside the bladder.
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.:
I had terrible bladder pain starting in 2019. I was fortunate to be referred to an excellent urogynecologist who understood my disease and had a good action plan to get ahead of it. It took three years of meds and injections combined with pelvic floor therapy. I’ve gone from injections every week, to every two weeks, then ultimately to every 6 months for injections. It does flare with stress so there are intermittent injections as needed. My advice is always ask your doctors how any new ailment might be related to your Sjögren’s and if you are not satisfied with what you hear, ask your support group or the foundation and consider finding a doctor familiar with our disease. They are out there.
What is your best advice for another patient dealing with this symptom/ situation?:
Find a good urogynecologist who understands Sjögren’s. Consider pelvic floor therapy as it can be a game changer.
Please finish the following sentence: "Sjögren's has taught me...":
That “No” is a complete and acceptable sentence.
What are your most difficult symptoms?:
Dry eyes/mouth/nose, muscle and joint weakness, interstitial cystitis, nerve pain and digestive issues
How has Sjögren's impacted your life (either physically, emotionally, financially)?:
Sjögren’s has impacted all areas of my life. It’s like learning to live within an electric fence and really knowing your boundaries on when to say when before hitting a wall. It’s about working to stay ahead of the disease as best you can. I’ve had to give up higher impact exercise because my body didn’t like it and injuries took too long to heal. I was fortunate enough to be able to leave a stressful corporate career and engage in a new career as my own boss. There is certainly a financial burden that comes with any disease with the many doctors and medicines needed to relieve symptoms. There are certainly sacrifices and impact that’s come with Sjögren’s, and any illness, however, I choose to do my best to stay positive and focus on moving forward. Getting upset and stressed only triggers our symptoms.
How do you effectively cope with the complexity of symptoms?:
Doing my best to stay ahead of my Sjögren’s is key. My program includes diet, exercise (even when I feel like I can’t), reduced stress and restful sleep. My body knows when I’m off the program so I work hard to keep to it as best I can. Understanding and accepting that Sjögren’s is like whack-a-mole is important. Symptoms and ailments pop up, they always do. Lastly, when I’m faced with a new symptom, I give myself a short time to mourn then move on.
What do you wish people knew about your Sjögren’s?:
Invisible diseases are complicated. Just because we look healthy it doesn’t mean we are.
How do you incorporate self-care with managing Sjögren's?:
By sticking to my regimen of diet, exercise, restful sleep and reduced stress. These are all a priority for me and are at the forefront of everything I do.
What is your go-to Sjögren's product?:
Xylimelts, Systane Gel and Tylenol Arthritis. And, I would not be able to function without Plaquenil.
What’s your best Sjögren’s tip?:
Give yourself grace and find the routine that allows you to feel at your best. Sjögren’s is a marathon, not a sprint.
Lisa
Patient-to-patient topic:
Interstitial Cystitis - bladder pain
What do you wish you knew when first dealing with this symptom/situation?:
I wish I knew this was related to my Sjögren’s. It took a few specialists to get confirmation and to learn that will be a lifelong issue.
What are the top 3 over-the-counter products or tools you use when dealing with this symptom/situation?:
I take a daily prescription medicine called Myrbetriq and also get instillations as needed. Instillations are a combination of medicines injected into your bladder through a catheter. The meds are steroids, blood thinner and lidocaine, all to reduce irritation and inflammation inside the bladder.
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.:
I had terrible bladder pain starting in 2019. I was fortunate to be referred to an excellent urogynecologist who understood my disease and had a good action plan to get ahead of it. It took three years of meds and injections combined with pelvic floor therapy. I’ve gone from injections every week, to every two weeks, then ultimately to every 6 months for injections. It does flare with stress so there are intermittent injections as needed. My advice is always ask your doctors how any new ailment might be related to your Sjögren’s and if you are not satisfied with what you hear, ask your support group or the foundation and consider finding a doctor familiar with our disease. They are out there.
What is your best advice for another patient dealing with this symptom/ situation?:
Find a good urogynecologist who understands Sjögren’s. Consider pelvic floor therapy as it can be a game changer.
Please finish the following sentence: "Sjögren's has taught me...":
That “No” is a complete and acceptable sentence.
What are your most difficult symptoms?:
Dry eyes/mouth/nose, muscle and joint weakness, interstitial cystitis, nerve pain and digestive issues
How has Sjögren's impacted your life (either physically, emotionally, financially)?:
Sjögren’s has impacted all areas of my life. It’s like learning to live within an electric fence and really knowing your boundaries on when to say when before hitting a wall. It’s about working to stay ahead of the disease as best you can. I’ve had to give up higher impact exercise because my body didn’t like it and injuries took too long to heal. I was fortunate enough to be able to leave a stressful corporate career and engage in a new career as my own boss. There is certainly a financial burden that comes with any disease with the many doctors and medicines needed to relieve symptoms. There are certainly sacrifices and impact that’s come with Sjögren’s, and any illness, however, I choose to do my best to stay positive and focus on moving forward. Getting upset and stressed only triggers our symptoms.
How do you effectively cope with the complexity of symptoms?:
Doing my best to stay ahead of my Sjögren’s is key. My program includes diet, exercise (even when I feel like I can’t), reduced stress and restful sleep. My body knows when I’m off the program so I work hard to keep to it as best I can. Understanding and accepting that Sjögren’s is like whack-a-mole is important. Symptoms and ailments pop up, they always do. Lastly, when I’m faced with a new symptom, I give myself a short time to mourn then move on.
What do you wish people knew about your Sjögren’s?:
Invisible diseases are complicated. Just because we look healthy it doesn’t mean we are.
How do you incorporate self-care with managing Sjögren's?:
By sticking to my regimen of diet, exercise, restful sleep and reduced stress. These are all a priority for me and are at the forefront of everything I do.
What is your go-to Sjögren's product?:
Xylimelts, Systane Gel and Tylenol Arthritis. And, I would not be able to function without Plaquenil.
What’s your best Sjögren’s tip?:
Give yourself grace and find the routine that allows you to feel at your best. Sjögren’s is a marathon, not a sprint.