4 posts tagged “lupus SLE”

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

Posted November 19th, 2018 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.

Parents with lupus (or any health condition) ‘don’t have to be perfect’ — take it from this mom

Posted October 24th, 2018 by

PatientsLikeMe member Jeanette Alston-Watkins (JeanetteA6872) was diagnosed with lupus in 2006, when her kids were 11 and 14. “My kids are my strength and they gave me energy and willpower,” she says in this Q&A about parenting with SLE. (Jeanette is on our 2018 Team of Advisors.)

Can you share a bit about your diagnosis and how it impacted your children?

They were 11 and 14 when I was diagnosed with lupus, but I started getting symptoms three years before, if not earlier. They didn’t understand why their mom was always sick and tired.

To give you a little background on me, I need to always stay busy. When I was diagnosed with lupus in 2006, I had just recently been married (less than a year) and I was working full-time as a sales manager for a manufacturing plant. I was going to school part-time to complete my bachelor’s degree in business. I was a team mom for my son’s football and lacrosse teams, and for my daughter’s soccer and lacrosse teams, and I also assisted with her volleyball team. I really stayed busy. So, when you’re that busy and have all this energy, people notice when your energy level isn’t what it should be. I started hiding from the sun more, resting or sleeping during breaks and getting sick all the time. Something was wrong.

The first year, I was totally alone because I didn’t want to tell my new husband what was going on. How would I even tell him? I didn’t know what to tell him since I didn’t know enough to explain. The only thing I remembered was my friend died from lupus years ago. So, after a year or so, I researched all my options and finally was able to talk to him about it, and then I told the kids.

What’s the toughest aspect of raising kids when you’re living with SLE?

The hardest part of living with lupus and raising kids is having the energy to keep up with them. I realized that I couldn’t keep up with my schedule as it was, let alone their hectic schedules. I had to start including the many doctor visits.

I had to stop being in the sun for so many hours a day. I needed to be protected with SPF, clothing, hats, sunblock, sunglasses and umbrellas. These were things I never paid attention to, but I had to start, and I needed to teach my kids about the importance of it.

I had to start resting when my body demanded rest. I had to figure out what I could cut out of my life and still feel normal. I realized, I had a lot of research to do if I want to live until 100, as planned, and to be able to see my children grow up. (They’re adults now – my daughter is a legal assistant and my son is an airman in the U.S. Navy.)

I had a lot of work to do, if I wanted to live and beat this disease.

My kids are my strength and they gave me energy and willpower to overcome so many bad days. First, it was hiding how I felt in front of them, then having the strength to show them that I am human and felt constant pain, but that didn’t mean I was going to die. My bad days didn’t outweigh all the good days. I’m a fighter because of my kids.

Do you have any practical pointers or words of wisdom for others who are juggling lupus and raising a family?

Here are three of my constant reminders that help me:

  • “Give yourself a break sometimes.”
  • “You don’t have to be perfect.”
  • “You don’t have to do it all alone.”

These are things I learned throughout the years. Ask for help – that was the hardest thing for me. If you can’t pick up your kids daily, ask a neighbor who is going to pick up their kids anyway. When you’re feeling better, offer to pick up their kids for them, so they can run an errand occasionally. People don’t mind helping others now and again.

If you’re feeling alone, vent in forums like PatientsLikeMe, in support groups like the ones provided by HMHB, or to close friends. There’s always someone willing to listen to you for a little while and they are comfortable telling you when enough is enough.

It’s okay to feel sorry for yourself occasionally, but it’s important not to stay there and move on. It always gets better.

I completed my bachelor’s degree, then went on to my MBA while juggling team mom duties for football, but I had to make deals with the kids on who needs me more as I couldn’t continue to do all the sports while working and school. Something had to give, and I didn’t want it only to be me. Communication got us through the hardest years and I wasn’t afraid to ask for help after a while. Kids are capable of so much more than we give them credit.

Has living with lupus shaped your family or brought your family closer in any way?

I think living with lupus has helped my family become even closer because they had a fear of losing me, so both of my kids are extremely close to me. They appreciate the little things a lot more.

When they were growing up, we used to save our change from January 1 to December 15 and decide who we wanted to share it with, like families struggling financially around the holidays. The most memorable year was when my son suggested we find kids with lupus and make their Christmas merry. We had saved over $600 and bought gifts and took it to the children’s hospital. That was many years ago, but it’s something I will never forget.

Are you a parent or guardian who’s living with a health condition? Join PatientsLikeMe or log in to connect with more than 17,000 members who’ve told us they’re interested in the topic of parenting (once you join/log in, you can find these members here).