3 posts tagged “connected network”

Lupus Diagnosis and Lupus Self Test: Member Hetlena’s pointers for her old (newbie with SLE) self”

Posted 12 months ago by

What would someone who has lived with lupus (SLE) for decades tell her younger, newly diagnosed self? PatientsLikeMe member Hetlena (@TheLupusLiar), who was diagnosed with lupus in 1993, recently answered that question for us in the following personal essay reflecting on what she’s learned through the years…

“This isn’t the end. There are other things that can give your life meaning.” —Christine Palmer, Dr. Strange (2016 film)

In the 2016 movie Dr. Strange, a main character, Christine Palmer, captures how it feels to be confused, frustrated and hopeless – feelings I’m very familiar with because of SLE. The diagnosis of lupus can be mixed with pain, nausea, fever, swelling and all too many other symptoms and ailments combined. From the very beginning, it became more than I could bear – or at least so I thought. I felt targeted all the time. When I reflect on my feelings right after my diagnosis, I remember most of all that I didn’t feel confident.

If I knew then what I know now, I would…

Question everything

There was so much about lupus that I didn’t know about (and years later, there still is). Naturally, a diagnosis or the confirmation of one can come as a shock. Because of all the perplexing activity that happened with my body, I knew something was going on. Writing down questions about the pain would have reminded me to ask my physician and help shape the treatment path for my medical team to explore.

Asking questions also would’ve curbed my anxiety and desire for the doctor to just cure me. I would’ve been more open to the fact that my physician needs to question and test things, too. This would have saved a massive amount of time in the trial and error phase of my diagnosis.

I would also ask more questions about medications and treatments, rather than just swallowing the pill, literally. Medicine is not always medicinal. In addition to asking how a new treatment would affect my stomach and daily function, I would also ask how the medicine would affect my finances (and see if there is a generic of the medication). Now, I take the time needed to research recommended medications and treatments online. Many lupus patients have more experience with treatment plans, so I also read comments from patients in lupus forums like PatientsLikeMe.

Journal the journey

When my body was constantly going through discomfort, I would’ve kept a diary of what was happening, with as many details as possible about my symptoms. I would keep a record about what I ate, what I was doing, and even what was occurring around me during the heightened times of what I now know were flares.

Know that patience takes practice

Waiting on test results wasn’t always easy. Yet, what else was I going to do? I could keep hounding the medical offices, but it wouldn’t make the results come back any faster. Every step toward my diagnosis required patience for the people and process required to help me reach the most informed outcome possible. If I could go back in time, I would mark my calendar with appointments when blood would be drawn and also when the test results were expected to be back. Understanding that my medical team would need time to review test results would’ve helped me realize that waiting was inevitable. I know now that patience is more than a virtue – it is a lifestyle change.

Accept my new role (patient)

At first, I felt that solutions lay in my physician’s office. I viewed every doctor’s appointment as an open door to feeling better. That was not so. My visits became a revolving door of questions and tests. Not every appointment led me out of the maze. I was angry. I was upset. I didn’t want to accept the fact that the time and knowledge of the specialists was indeed worth a lot. After a change in perspective, I reflected on how all this personal process was a labyrinth of decisions – decisions that I took the lead on. I was the chief of my medical journey. As a patient, my perspective was my guide.

Talk to people

A diagnosis doesn’t mean it’s the end of your relationship with life. If I knew then what I know now, I would not be shy in sharing my confirmed diagnosis. Social media is not always the only outlet to therapeutically release the ups and downs of life. But it can help. I would share with my family and friends about my new limitations. I believe divulging my personal concerns early on in my diagnosis would have released a lot of stress that I didn’t have to internalize. Talking about things makes them less scary. Another person’s perspective can help you make sense of things that are going on with your health. It also makes you more confident in communicating your concerns.

Find the positives

The limitations of lupus that I thought were going to weigh me down actually became new ways of lifting me up. For example, now I pay closer attention to what I eat. I’ve added exercise and yoga to my weekly routine. I take the time to pack carefully for a trip instead of just throwing my stuff in a bag and going. Planning makes my health and trips go so much smoother than before I was diagnosed with lupus. But most of all, I get to look at my relationships more carefully. I found meaning in sharing my story with others. Helping others take a more positive spin on being diagnosed with lupus is both rewarding and challenging. But it’s so worth it!

I know now: acknowledging a lupus diagnosis is not an easy thing to do. It takes practice to be proactive instead of reactive, and the journey can be more comfortable with more experience.


Dr. Rick Bedlack weighs in on telemedicine

Posted July 9th, 2018 by

Do you have difficulty getting to your doctor’s appointments? Ever thought about using telemedicine? Connecting online can make it easier to get the care you need. Here, Dr. Rick Bedlack (a tenured associate professor of Medicine/Neurology at Duke University and the director of the Duke ALS Clinic that’s partnering with PatientsLikeMe in the current Lunasin study) explains the basics of telemedicine, his “Tele-ALS” program and how telemedicine could improve patient clinical trial experiences in the future.

Telemedicine 101: How does it work?

“Telemedicine” connects patients and their doctors through secure video conferencing programs (similar to “FaceTime”). Both parties need to have a computer, tablet or smartphone, and a video conferencing program that has been approved for use by the doctor’s institution. I have been offering this type of care to patients with ALS for several years now, through separate “Tele-ALS” programs at the Durham VA Medical Center (VAMC) and Duke University.

The pros of telemedicine

  • No travel: The main benefit of Tele-ALS is that it allows patients with ALS who live in rural areas to continue to connect with their ALS specialist throughout their disease, even when travel becomes difficult or impossible.
  • Symptoms management: This connection facilitates expert identification and management of the many modifiable symptoms patients with ALS experience throughout their illness, such as drooling, thick secretions, excessive laughing and crying, cramps, spasticity, pain, insomnia, anxiety, depression, and constipation.
  • Tech troubleshooting: It also facilitates identification and triage of equipment problems such as malfunctions in speech generating devices or power wheelchairs.
  • Keeping patients in the know: I have personally found it to be very useful in keeping patients informed about exciting research and alternative options and in this manner helping them stay hopeful throughout their illness.
  • More accessible clinical trials: In the next year, I will pilot the first ever totally virtual ALS clinical trial. Instead of making “in person” study visits, this trial will conduct all required visits via Tele-ALS. This should make participation much simpler and more attractive for patients and families.

The cons

There are some down sides to Tele-ALS…

  • From a patient’s perspective, many have told me they miss coming in and meeting in person with all the members of my team. Not all patients have a computer, tablet or smartphone, or Internet access.
  • From my perspective, I miss not being able to perform a detailed neurological exam. Given this limitation, I would not offer Tele-ALS to a patient I had never seen before —only to those whom I have already examined and confirmed the diagnosis in person.
  • From an administrator’s perspective, there currently is no way to bill for a typical Tele-ALS visit. This is the main reason that more clinics are not offering it. We are only able to offer it at Duke because of a generous grant from the North Carolina Chapter of ALSA.
  • Finally, there is a silly rule that prevents us from crossing state lines with this care model. The VAMC has found a way around this rule and VA providers can now offer telemedicine, including Tele-ALS, “anywhere to anywhere.” Hopefully non-VA hospitals will figure out how to do this soon.
telemedicine

telemedicine

Going forward

As we work out some of the problems with billing and crossing state lines, I think telemedicine and especially Tele-ALS clinics are going to become much more common. If my upcoming virtual research study shows good compliance and adherence, Tele-ALS will be increasingly used in trials to minimize participant burdens as well.

For more information:

www.telehealth.va.gov

www.dukealsclinic.com/telemedicine

Have you tried telemedicine? Why or why not? Join PatientsLikeMe and share your experience with the community.

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