In honor of Sjögren’s Awareness Month, we connected with PatientsLikeMe member Dana, a New Jersey-based poet and screenplay writer who was recently diagnosed. This isn’t the first time we’ve interviewed Dana — she was a member of our 2014 Team of Advisors!
Here, Dana talks about the daily challenges of living with Sjögren’s, an autoimmune disease often associated with rheumatoid arthritis that affects nearly 2,000 other PatientsLikeMe members. She also shares how she manages Sjögren’s along with her other conditions (bipolar II, depression and thyroid issues), and offers some advice to patients in her situation: “Take it moment by moment.”
Tell us about your diagnosis experience.
It started with pneumonia. After a batch of antibiotics, I was OK. Then I got a glandular infection. More antibiotics. Two months later and it was back again, it looked like I had the mumps, but it was my glands behind my ears again. My primary doctor suspected something and ran a complete blood work on me. Testing for RA and lupus and everything else.
I came back negative for RA, but positive for something called Sjögren’s syndrome and nothing else.
Most doctors only know that you get dry eyes and dry mouth from Sjögren’s syndrome. But there are more dangers to the body than just those two symptoms. I have chronic pain in my hips and my knees, which is strange since I have two total knee replacements. So it’s really not a joint issue. It’s a connective tissue issue. So my whole body aches and is sensitive to the touch, meaning if you just touch me, I feel pain where you touched me.
How would you describe Sjögren’s to someone who doesn’t have it – how does it affect your daily life?
Sjögren’s is a close cousin to lupus and is treated in the same way and with similar medication. I wake up early to take my thyroid medication. Then after light therapy for my depression, I can eat and take my Plaquenil for the Sjögren’s, and the vitamins and other medications for the bipolar and depression.
But during the first hour and a half, I am in pain. I have to take pain killers to function. I still get break-through pain from walking too much or sometimes from doing nothing but sitting.
I have something called “flare-ups” where the pain is so excruciating, even my daily meds can’t help me. So I have to take Prednisone for six days. This usually means I’m down for a week in bed, sleeping and dizzy and just feeling awful.
You never know when a “flare-up” will occur, so making plans to do future things is nearly impossible. I take it day by day and sometimes, moment by moment.
How has it been managing your Sjogren’s syndrome along with bipolar II, depression and thyroid issues?
It was very hard in the beginning. I had over 20 years to learn the ins and outs of dealing with mental illness. But I was clueless when dealing with chronic physical pain. Talk therapy doesn’t work when it feels like a knife is being twisted in your thigh.
I was lucky that I have medication which is working for me presently and at the time of diagnosis. I found an online support forum which answered many questions my doctors where unable to answer for me.
There are times when you do feel fine and the pain level is low and you just want to do EVERYTHING! But you have to pace yourself, or you will find yourself exhausted and unable to do anything. This is something I’m still working on, the pacing. You are so used to feeling bad, that even the small windows where you feel like a human being again have to be taken slowly.
Overall, it is very hard dealing with depression/BP/anxiety, etc. and not being able to walk some days or being so physically tired that it’s an effort just to get up to take care of yourself. But you do it.
What’s your best piece of advice to other people managing multiple conditions?
Don’t dwell on all the illnesses that may be on your plate. It will make you numb. Instead, just keep moving forwards. Adapt, improvise and overcome. I remind myself of this, because you have to adapt to whatever situation you are in and you have to improvise on different ways to look at your life and sometimes it may be dark, but you have the strength to overcome what you may be feeling at the moment. Take it moment by moment. Don’t look at the big picture, just the things YOU can effectively handle and change.
This month is all about awareness – what do you do to stay informed on the latest research and information about your conditions?
I read the forum posts and I subscribe to some newsletters. I find the most helpful information from the Sjögren’s Syndrome forum I frequent and I also read articles on the Sjögren’s Syndrome Foundation.
What was the most valuable thing you learned in your experience as a member of the 2014 Team of Advisors?
That we all have something in common, no matter what our illness may be. When I joined, I wasn’t diagnosed with any of the other physical ailments I have now, so there were times I felt out of place. But by listening to others talk about their experiences, I could apply my condition to their condition and learn a new outlook on where I was in my life.
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