5 results for “roulette”

“Adapt, improvise and overcome.” — PatientsLikeMe member Dana shares her experience for Sjögren’s Awareness Month

Posted April 15th, 2016 by

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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Getting to know our 2014 Team of Advisors – Dana

Posted October 3rd, 2014 by

Just last month, we announced the coming together of our first-ever, patient-only Team of Advisors – a group of 14 PatientsLikeMe members that will give feedback on research initiatives and create new standards that will help all researchers understand how to better engage with patients like them. They’ve already met one another in person, and over the next 12 months, will give feedback to our own PatientsLikeMe Research Team. They’ll also be working together to develop and publish a guide that outlines standards for how researchers can meaningfully engage with patients throughout the entire research process.

So where did we find our 2014 team? We posted an open call for applications in the forums, and were blown away by the response! The team includes veterans, nurses, social workers, academics and advocates; all living with different conditions. Over the coming months, we’d like to introduce you to each and every one of them in a new blog series: Getting to know our 2014 Team of Advisors. First up, Dana.

About Dana (aka roulette67)

Dana is a poet and screenplay writer living in New Jersey. She is very active in the Mental Health and Behavior forum. She is open to discussing the ups and downs of living with bipolar II and helping others through their journey. She has been through weight loss surgery three times and is very interested in the connectivity of diet to mental health—she believes that psychiatrist’s need to be aware of the whole person, and have an understanding about diet, physical health and mental health, not just focus on medication.

Dana is passionate about fighting the stigma of mental illness, which causes people to self-medicate. She believes there needs to be more positive examples on television. Here’s a fun fact about Dana: she won the people’s choice (top voted by peers) award in the PatientsLikeMe video contest for her video, I am not alone.

Dana on being part of the Team of Advisors 

It’s really quite an honor, considering the amount of people on the site. I’ve discovered what a wonderful group the advisor’s are and have had some meaningful conversations with a few of them online. I appreciate the opportunity in helping others in anyway I can to understand what we go thru on a daily basis. By getting a glimpse into the life of someone with an illness, I feel that I am educating them and helping them understand a person they might love or know or have dealings with in their own lives. And hopefully open their eyes a bit. 

Dana’s view on patient centeredness

Like those commercials for the Cancer Institute, where there are more than one doctor or professional to treat the whole patient instead of just the symptoms of one illness. Many times when you are mentally ill, it seems your body also suffers in physical ways, your diet also becomes poor. Patient-centered to me means that the doctor should look at your diet, your physical and your mental health. Just asking if you are taking your meds is not enough. Psychiatrist seem like pill dispensers and then dismiss you from their office and therapists talk, but really have no interest in the meds. More of a team effort is needed.

Dana’s contribution to researchers at the University of Maryland

PatientsLikeMe recently invited the University of Maryland (UMD) to our Cambridge office for a three day consortium that kicked off a partnership funded by their PATIENTS program, which aims to collect patient input and feedback on all phases of research, from ideas to published results. As one of the working sessions we invited Dana to join us remotely, to discuss her journey with bipolar II and share her perspective and expertise as a patient. Here’s what she experienced:

I was a little nervous at first, hoping I was able to answer their questions and provide them with what they needed to know. The questions were pretty specific at times and I found that to be interesting. Because it showed me that they really wanted to know and understand my views. I enjoyed the experience and hope that my interview helped them in some way.

I was very honest. Explained what it is like to suddenly become bipolar when you had no reference point in your life to prepare you for the physical and mental storm it brings. I stressed how it’s a 24/7 – 365 a day battle, even when the meds are working. At least in my experience it has been. I feel this was an important point to make and that they should consider this when dealing with participants in their research.

I would tell researchers moving forward to always remember the patient is more than a test subject. That what you are researching addresses them on a daily basis and some days, the best they can do is just get out of bed. That some type of break should be considered and might even work to their advantage.

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