3 posts tagged “multiple conditions”

“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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National Cancer Survivors Day: Meet a True Survivor

Posted June 8th, 2011 by

National Cancer Survivors Day - A Celebration of Life
National Cancer Survivors Day was recently celebrated on June 5th. According to the organization behind it, the purpose of this annual event – now in its 24th year – is to “show the world that life after a cancer diagnosis can be meaningful and productive.”

To help illustrate this inspiring message, we’d like to share an interview with TysabriSept08, a survivor who continues to work and thrive while battling both multiple sclerosis (MS) and breast cancer.

1.  Tell us about your first diagnosis with breast cancer in 1999.

Well, I was annoyed and pissed. I already had MS. Didn’t exactly like losing a breast. I could not have reconstruction with an implant because of immunosuppression. Any drug I took for MS would lower my immune system, making infection more likely. I was not about to go through all the surgery needed to use my own body tissue. Slender, I do not have any to spare.

Also, I had to work and did not want a long recovery period. I had the mastectomy on a Tuesday and was back on the lecture platform the next Wednesday. I did not do chemo or radiation because it would have negatively affected the MS. We even minimized the surgery time and used a special anesthetic, which was easier on my already crippled nervous system. I did not even continue with Tamoxifen. It made the MS much worse so I quit after less than two months.

2.  Last year, your breast cancer came back.  What was that like?

TysabriSept08, A True Survivor

Actually, cancer came back twice. First in 2007. We waited a year (very low CA 27 29 levels) and the cancer was isolated to a small same side chest wall lump – free moving. By 2008, a year later, it had grown a little. Still very low CA 27 29 levels. I had the lump removed under local anesthesia – piece of cake. We kept the incision to a minimum (less concerned with those borders.) I did five days of localized pin point radiation via a Linear Electron Accelerator – calibrated to miss muscle, bone lungs – to take care of cancer cells at those borders.

Another lump appeared in June 2010 – popped out over night! It was about 1/2 inch from the 2007 lump! More local anesthesia to remove it – then 10 days of pin point shallow radiation – same machine! However, my CA 27 29 levels started to rise, and they are now through the roof. There is a lot of cancer running around in my body. I am asymptomatic. The cancer seems to not be landing anywhere.

3. How are you dealing with your breast cancer now?

The breast cancer is now metastatic. It can never be got rid of or cured. My treatment is palliative – we remove lumps, minimal radiation. I have not gotten any new lumps. I am asymptomatic and feeling fine, cancer-wise. I think the cancer has not landed anywhere because of my very high Vitamin D3 levels. My levels were 177 in March. I cut back a bit and, as of May 6, my levels were 120. Oops, I got vertigo – so I am back to my previous Vitamin D3 doses – about 6-8,000 IUs per day. See our Vitamin D3 Megadose Thread [in the Multiple Sclerosis Room]. We did some brilliant research on D3 and MS. Later, we found that D3 is also an anti-cancer agent.

Are you a cancer survivor as well? Have you found supplements or alternative treatments that have helped you too? Share your experiences in the comments section.


Four Issues, Four Solutions: The Evolution of PatientsLikeMe

Posted May 3rd, 2011 by

Like many of the changes we make to our site, the recent upgrades at PatientsLikeMe – including opening up the site to any patient with any condition and allowing you to share  multiple conditions through your profile – were the direct response to what you, our patients, have asked from us.

Over the past five years, we’ve received a number of requests from you.  Here are the top four points you’ve made in those requests:

Issue 1:  “PatientsLikeMe does not have a community for my condition”

  • Since we launched in early 2006, approximately 25,000 people contacted us and asked us to create a community for their specific condition.  Naturally, that got our attention.

Issue 2:  “I have more than one condition”

  • From the beginning, you’ve told us that you want to be able to share about everything you’re experiencing as a patient, not just one single condition.

Issue 3:  “I can’t access all the relevant information on the site”

  • What if you have MS but struggle with depression?  You told us that you wanted to learn about other health issues – without creating a second account.

Issue 4:  “I don’t define myself by one diagnosis alone”

  • “I am not my disease,” you said.  So what if you could reflect your entire health situation on your profile in order to find people even more like you?

In listening to your input, it became clear what had to be done.  We needed to make it so all patients – and not just those with certain conditions – could benefit from our health data-sharing platform.  We also had to remove the existing limitations on what you could share and who you could share it with.  It was not only what you requested, but it was in keeping with our Openness Philosophy.

Solution 1:  Open up the site to any patient with any condition

  • This allows us to serve any patient who could benefit from our site and help those who requested communities we didn’t already have represented.

Solution 2:  Allow for multiple conditions to appear on one profile

  • For those with multiple conditions, we needed to make it a manageable task for you to add conditions to your profile without the need for multiple accounts.  This upgrade also helps everyone find more patients like them.

Solution 3:  Make all profiles visible to all members who are logged in

  • In order for you to find patients exactly like you – with not just one condition in common, but perhaps three or four – you needed to be able to view all profiles.

Solution 4:  Create a Quality of Life (QOL) survey that works for all patients

  • How do your conditions affect your physical, social and mental well-being? By rolling out a great QOL tool, you can now measure those exact impacts over time, regardless of what individual conditions you may have.

We’re all in this together, and that means we are necessarily evolving together.  Thank you for participating in this process with us, which of course will only continue.  What’s ahead?  Check out our new video below about this chapter in our evolution as well as what other patient-led improvements we envision in the future.