3 posts tagged “lupus patient”

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.

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Lupus Weight Gain: Q&A with the founder of Making Lupus Look Good

Posted October 12th, 2018 by

Alyshia Merchant knows first-hand how lupus can affect you inside and out. After her diagnosis in 2012 and struggles with visible symptoms and self-esteem, she launched an organization called Making Lupus Look Good, which provides wigs and “glam sessions” to people with lupus-related hair loss and other symptoms. The organization currently serves people in Alyshia’s home state, Virginia, but she hopes to establish a 501(c)(3) and take the organization to a national level soon.

Alyshia recently shared more with us in this Q&A.

Lupus Weight Gain - Alyshia 1

Can you tell us more about Making Lupus Look Good and what inspired you to start it?

My entire experience with lupus has affected my self-confidence tremendously. I would take pictures of myself and compare them to older pictures, and it was a very emotional experience. In the midst of my struggle, I developed a passion to help rebuild the self-esteem of other women living with the same insecurities that I struggle with day in and day out. My life is now dedicated to helping women see that they are still beautiful – despite whatever insecurities lupus may throw their way. It was my own pain that inspired me to create Making Lupus Look Good. I’ve found that there’s so much healing in helping others.

Right now, we run our organization based on volunteer hairstylists, makeup artists, estheticians and photographers. If a patient needs a wig due to hair loss, we begin an “Adopt-A-Patient” fundraiser. With this program, we raise funds to purchase the hair and create a custom wig for the patient. So far, we’ve only been able to provide our services to patients in Virginia because of limited resources. However, we recently partnered with Xtensions4Us, a hair company located in Independence, Missouri. With this partnership, we’ve created a bridge and we’ll be able offer services on a nationwide level in January of 2019. We are hosting a fundraiser, An Evening Of Hope, on December 21 (keep an eye out here for event details). We plan to use a portion of the proceeds to finally become a 501(c)(3), so that we can change even more lives.

What happens in a “glam session”?

Some of the many challenges associated with lupus include hair loss, skin disfigurement and, in many cases, weight gain from medications (chronic fatigue also makes working out very challenging). Because we understand how devastating these symptoms can be for a woman, Making Lupus Look Good offers a full glam experience, including a makeover/photo shoot, custom wigs if needed, as well as one-on-one skincare consultations and health coaches. All of these services are free of charge to the patient and are intended to help restore the self-esteem that these women have lost during their battle.

Lupus Weight Gain - Alyshia 2

How has lupus affected your physical appearance? Any pointers for coping with visible symptoms/treatment side effects?

Many symptoms affected my self-esteem, including the classic butterfly rash across my face and weight gain – not only from steroids used to suppress my immune system, but also from edema when lupus was attacking my kidneys. I would carry around about 30 pounds of painful fluid in my feet, legs and stomach. Macular edema was another struggle for me – it caused swelling and puffiness around my eyes.

Out of all of the symptoms that I’ve encountered, hair loss hit me the hardest. I would lock myself in the bathroom and cry for hours.

Although I was able learn to better manage lupus after six months of chemotherapy, I’ve still found that these symptoms resurface from time to time. So I have found many ways to help me cope, like:

  • Whenever I’m dealing with hair loss, I go out and find a very stylish wig that flatters my face. I’ve found that as long as I’m not putting any stress on my hair by pulling and tugging, it will grow back.
  • As far as skincare, I use an SPF 50 sunscreen lotion. If I’m attending an outdoor event, I’m not ashamed to walk around with an umbrella. Yes, I do get a few stares, but that beats getting a skin rash, or triggering lupus. (If you do experience a skin rash, you can reach out to a makeup artist, or go on YouTube to find different ways that makeup can conceal rashes and pigmentations.)
  • If I’m experiencing swelling, I cut down on sodium, which helps me battle weight gain and water retention. I also go out and buy a few inexpensive pairs of stretchy jeggings. This not only makes me feel confident, but it’s also less painful than wearing a pair of blue jeans that are too tight.
  • And when I’m experiencing puffy eyes, which is very common for lupus nephritis patients, I use a cool facial mask for about 20 minutes. This usually helps. But if for some reason my eyes are still swollen, I simply put on a pair of nice sunglasses.

Keeping up appearances while managing a serious condition can be tough – what’s the value of trying to look good when you’re not feeling great?

It was a long and hard journey adjusting to all of the changes that lupus has thrown my way physically, because I’d always based my beauty on just my looks. But I was humbled. And I learned that I am more than just my looks. We all are.

Yes, it’s hard while it’s happening, and it can beat you down at times. And that’s OK – as long as you get back up. Surviving hard times makes you a stronger person. And as long as you keep a positive mindset, you’ll find that most things aren’t as serious as you thought they were. On days when you’re feeling off, go shopping. Go out and get some new comfy clothes, put on some makeup, throw on those sunglasses and go. At the end of the day, it doesn’t matter what anyone else thinks or sees, as long as YOU feel good. Because I believe that if you feel good… you can beat it.

On PatientsLikeMe about 34,000+ members are living with lupus. Want to connect with them about topics like this? Join the community or log in today.

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