Mothers with Lupus


Calling all mothers who have Lupus!!

I was scrolling through the webinars for the SLE Foundation and came across this:


I know I’ve been on a bit of a binge recently with women who are mothers and have been diagnosed with Lupus (before pregnancy and after) but this topic is particularly fascinating to me. Having children isn’t in my immediate future, but questions about the reproducing process have been coming up lately.
That being said, I have some questions for you all. I’ll do a follow up (if there is interest) with some answers I receive. For your answers, email me (private) or you can post in the comment section (public), or you don’t have to answer at all. You can also select a few of the questions to answer.

**This will be helpful to all the hopeful mommies out there.

Did your doctor go over different methods instead of pregnancy? (Adoption, surrogate?)

Were you worried about giving your child Lupus?

Was it hard to get pregnant? OR Did you adopt? OR Did you do a surrogate?

If you used a surrogate, which process did you use? Did you use one of your eggs?

Was pregnancy difficult?

Were there any complications?

How were your Lupus symptoms during your pregnancy?

Since having your baby, how has your Lupus been with stress?

Thank you all so much! Again, you don’t have to answer, and if you do, please don’t feel obligated to send specific information.

New Year, New US

What a year it’s been for The Lupus Loop! In this community, we’ve created a safe place where we can all share our experiences- the good and the bad- and come together in support. I’m very fortunate to everyone who has supported, viewed, shared, commented, talked about and contacted me through this blog and on Facebook. I love hearing from all of you and becoming friends!

This year, I’ve had the wonderful opportunity to speak with many about Lupus. Their battles, encouragements, inspirations, mottos, circumstances and love has taught me so much more to the disease (as I hope it does by my continued sharing of these extraordinary beings who offer their stories). Expect great stories this year!

This month, I want to focus on two individuals who I’ve had the pleasure of speaking with! Strength is born in us we just have to find it. Sometimes it’s on the surface so it is easy to access but other times it’s more difficult. We have to be able to allow ourselves the ability to be angry with our situations.

Christine is a mom who wasn’t diagnosed with Lupus until after her baby girl was born. However, almost immediately after birth, Lupus was in full swing when her joints wouldn’t budge on Thanksgiving. After being diagnosed with Lupus, Christine made the courageous decision to stop breast-feeding and focus on her health too.

What’s so interesting about her story is she spoke to me about the “stages of grief” and accepting a new normal. We’ve been there, right? I know I still struggle with not being able to do EVERYTHING I want because my body tells me no. She has no trouble allowing herself to just be in acceptance (although she admits to bartering between the stages…) *If you don’t know the stages, see below the interview.

Lupus Loop: What keeps you inspired?

Christine: My family (friends included in my family). My family has held me through my diagnosis, whether it’s taking me to doctor appointments, watching the baby, etc. I’m so grateful I have them. I also am grateful for my yoga practice. Yoga is not so much about what I have accomplished physically (although my strength has significantly increased) but how I have grown as a more spiritual person. When I am hurting, feeling down and or sad, a good yoga practice is what I need to kick start my attitude, and outlook on life. It made me live more in the present, which is the only way to live. Yoga can be done anywhere, on the floor next to your bed for example. Yoga books can be rented from local libraries; meditation can be downloaded on podcasts from your phone. I just needed to take the time for ‘me’. (Eckhart Tolle, a spiritual teacher and author is a great place to start)

Lupus Loop: If you had any advice for someone just diagnosed, what would it be?

Christine: Keep your head up. Do your research. Doctor shop, find a doctor who listens to you, can communicate with easily, and that you feel good with (if eligible, don’t try to rack up bills because that could be a stressor, but your health is ultimately more important than money). Find time for you, and the people that matter most in your life. And try at times when it may be nearly impossible, stay positive! Sending all my fellow lupies my love and shining light!!! We’re in this together. <3 


Yana was diagnosed at 15 Being very active as a track runner and ballet dancer as a sophomore, she took notice when her fingers, knees and ankles began to swell, when the butterfly rash appeared and when her body would break out. After a week in the hospital, she was diagnosed with Lupus Nephritis. By the time she was in her junior year of college, Lupus was attacking her kidneys and she was placed on chemotherapy and both kinds of dialysis. Though she kept her sickness hidden for a little, a kidney transplant was needed. Now, 15 years later, Lupus won some battles, but she is winning the war! She’s finished college, had a baby, received her master’s degree and has continued to work!

Lupus Loop: What keeps you inspired?

Yana: I am inspired every day by what I’ve been through health-wise. I know what it means to be sick so I appreciate what it means to be healthy even more. I try to make the best out of life because I’ve been so close to loosing it. My daughter also keeps me inspired; she’s a miracle baby. I’m also inspired by God, because know I would not be here on this planet if it were not for Him. Fashion keeps me inspired also, I started a blog last year, which has turned into a wonderful outlet for me.

Lupus Loop: If you had any advice for someone just diagnosed, what would it be?

 Yana: I have faced a lot of challenges; Lupus had me unable to walk at one time, I’ve had my hair fall out on more than one occasion, I’ve been on chemotherapy and 2 different types of kidney dialysis (hemo and peritoneal), all at a young age. I feel that I am a testament to Buddha’s quote: “The mind is everything. What you think you become.” I believe that what you focus on is what you feed, and that is what grows. I never chose to feed the disease or my circumstances; I continued to focus on my friends, family, fun and fashion at all times. Even when I was at the lowest point of my sickness, I made sure I stayed fly and smiled. I didn’t want my life to change due to the rude interruption of an uninvited disease. My advice is to keep your mind as healthy as possible. Focus on the good and good will come, even when it seems your body is not in agreement – it will catch up. Let your mind guide you and not your body. Don’t believe in Lupus. Believe in a good life filled with family and friends, God, and a positive future. Take your medicine, and live a healthy lifestyle. Don’t let go of your dreams and always find time to do what you love!

Thank you so much to Christine and Yana for sharing your stories and making your voices heard!

I just want to share some exciting news on my part!! I have made aware my enthusiasm for fitness numerous times, I go pretty frequently to the gym (this works for my body). For the past few months, I’ve been spinning at SoulCycle and they just wrote an article about me! Check out it out below! YAY!


Lupus and Honesty

I want you all to answer the following questions honestly. You’re not hooked up to a lie detector so nobody will know but you. There’s not a single person able to answer these but you. Okay, ready?

  1. Do you ever skip your scheduled medication?
  2. When your doctor asks if you are taking all your medication do you say yes but really mean no?
  3. Are you afraid to tell the doctor the truth?
  4. Do you ever self-medicate?

I have skipped medication. I have lied to the doctor about it. I am afraid to tell them in fear of their judgmental looks. I have taken an extra dose of Furosemide when I felt swollen.

Am I alone in this boat?

Why do we do this? We are only hurting ourselves the doctors know what they are doing. For me, it’s simple. NO I do not do this on a regular occasion. YES it has happened a few times.

Let me explain. I’ve skipped a medication when I accidently fall asleep before I am supposed to take it. YES I have taken an extra dose of my water pill a few times because, honestly, the doctors are not with me when I wake up in the morning. Nobody can tell me how I feel. That being said, I have FULL permission from my doctor to do this, only with my water pill and only if I really feel the need.

My doctors trust me, so I must trust them. This is the hardest relationship I have. Why? I see them once a month, sometimes every two months and they base their judgments on how I look, how I tell them I feel but mostly the blood work. They cannot feel the aches or the uncomfortable tingling of swollen hands in the morning.

I am not advocating that you do this. I’m just telling the truth and trying to figure out why we do this.

What do you all think?

A few side notes:

THANK YOU to everyone who has emailed me regarding an interview and a chance to be on The Lupus Loop! I’ve been responding to everyone but if you haven’t received an email yet, do not worry, you’ll get one within the next few days!

The 2014 Lupus Gala is happening on November 24th at the Museum of Natural History! It is a celebration of breakthroughs in lupus research that are transforming patients’ lives and bringing us closer to a cure. The Gala Honoree, Iris Cantor, is passionate about improving healthcare and furthering medical research that will enhance the quality of life – goals the S.L.E. Lupus Foundation and the Lupus Research Institute deeply share and foster. The event’s Scientific Honoree, Dr. Bahija Jallal, is recognized for helping MedImmune fulfill its commitment to the lupus community as it champions innovation, pioneers scientific discovery and pursues safe and effective new treatments. The S.L.E. Lupus Foundation and the Lupus Research Institute raises millions each year at its annual Life Without Lupus Gala to support innovative novel research that can improve care while advancing towards a cure.

OH, and legendary Tony Bennett is the entertainment!!!

Something new…. An interview!

The great thing about Lupus (agree or disagree, it’s however you feel) is that we are never alone. Just look at all the people from around the world that are on social media with the S.L.E. Foundation! It’s so wonderful that we don’t suffer by ourselves. For the first few years, while living with Lupus, I neglected the resources, closing my mind off to getting to know people who had Lupus. But, not anymore! Now, I am able to talk openly about my disease and look forward to hearing other stories about how wonderful we all are.

So, without further ado:

I am so excited to announce the first ever interview on TheLupusLoop!

Chelsea first emailed me a few months ago and as time went on (and we officially became Facebook friends) we decided to interview each other. I am so fortunate to have had the chance to speak with her and how she manages the disease, with twin girls nonetheless! She’s a blogger, at so make sure you check her out too! She’s always has amazing posts!

NAME: Chelsea Rowel

OCCUPATION: Catering and Sales Manager | Mommie | Blogger at Mommie and Wee

Lupus Loop: Can you tell me your brief Lupus history?

Chelsea: I was diagnosed with Lupus my freshman year of college, but I’m almost positive I had it long before then. In the beginning, I was able to keep it under control. It wasn’t until I was pregnant that I had my first ‘real’ flare up and was in the ICU for 3 weeks. Since then, I have been taking actions to keep it controlled, although it’s not as easy as it used to be. I have started a lifestyle blog to raise lupus awareness and donations to the ALR.


Chelsea: Yeah, I did, and I hated it! I had to decrease the amount of Prednisone I was taking, and I had to stop one of my medications all together. After I was in the ICU, I had to increase my Prednisone to levels higher than I was originally taking, and now I’m on 3 other medications. Boo…


Chelsea: I was blessed with twin girls! But, yes, my lupus treatment is much different. I am more aware of little changes that may take place in my body — basically my body is more sensitive to the lupus than it used to be. I’m taking more medications, and I am also educating myself more on the disease. Before, I just took it day by day, but now I want to be as prepared as I can be, since it not only affects me, but my hubby and baby girls as well.


Chelsea: Honestly, I don’t. I try to put them off as much as I can. But, when I absolutely have to, I try to rest as much as possible. (Don’t follow my example!!) Just taking it easy can help so much. And! I always have to have a cup of hot tea if I’m not feeling my best. It somehow makes everything go away, just for a second or two.


Chelsea: My advice would be to take your condition into your own hands. Not everything the doctor may tell you is absolutely true. And, on the flip side, they may not tell you about everything that is to come. My doctor (at the time) urged me not to continue with my pregnancy. This was in the first trimester. If I would’ve listened to that ‘word of advice’ my beautiful girls would not be here today. Lupus does not have to hold you back from having children. Yes, it may make the journey a little bit harder, but you’re a Lupus Warrior. You can do it!

Also, you are definitely not alone. When I was pregnant, I was searching everywhere for advice and resources. I didn’t want to know the lupus symptoms and statistics that Google had to offer. I wanted to hear someone’s story! See how someone lived their life with Lupus, but that was no where to be found. If you are searching for this, feel free to check out the lupus page on my blog, or send me an email. I’d love to connect with you and hear your story!

LupUS affects US, but together WE are stronger!

Chelsea is a beautiful young woman who is so inspiring! Please take a look at her blog! If you have children, she gives the best advice for living with Lupus and children!

If you want to share your Lupus story, please send an email to! There will be features in the coming months!


Lupus and Traveling

In preparation for my best friend’s wedding on the 20th (yay!) I have started the process of my Travel Best Checklist: Airplane eddition. I made this up in 2007 when I was flying back and forth between Wellington, Florida and Madison, NJ every weekend for horse shows. See, when you have Lupus, and your immune system is already compromised, the idea of a germ infested, claustrophobic plane just doesn’t sound appealing. Also, I’m a bridesmaid therefore I cannot get sick!

  • Drink plenty of water! I mean it- a big bottle. Ex: The VOSS 28.74 fl oz bottle. 2 of these! It will keep you hydrated in flight.
  • Don’t eat big before boarding! Airlines usually offer snacks so try and stick with those (unless you have an afternoon/night flight).
  • Dress comfortably! Leggings a flowy top/light sweater. I suggest layering because who knows what the temperature of the plane is going to be!
  • Bring a scarf! It can double as a pillow if you need!
  • Socks are a must! Nobody likes walking on the airport floor through security barefoot! Gross! But also, if you are anything like me, (I have terrible circulation so my feet are always cold) I like to break out a pair of fuzzy socks so I can be comfortable in flight.
  • Get up once (Depending on flight)! I hate those people who have to get up to use the restroom every half hour, but since my circulation is bad, and I suffer from achy joints syndrome, I try and get up to move my legs and hips around.
  • Load up! I like to start drinking orange juice about two days before my flight so I have some Vitamin C in my system, which aids in immune system protection. Sometimes, I’ll take an “Airborne” or “Emergen C,” which gets added to water to work double duty.
  • Relax! I like to take a bath before my flight so my body is relaxed. I’m not a very nervous flyer, but I do get a little anxious, so the night before regime really aids in keeping me calm. Stress does not feel good for me!

Can’t wait to be in Florida and to stand next to her celebrating her big day!

How do you all prepare to travel? Does Lupus ever get in the way?

Lupus and Relationships

Over the past few weeks I’ve been thinking a lot about Lupus in a relationship, or more specifically, how Lupus affects a relationship. When I say relationship, I mean any kind of relationship: marital, significant other, friend, stranger… How do we as Lupus patients act toward these people? How do they act toward us? Is it any different?

When I started college, I felt brand new. Nobody knew who I was and certainly nobody knew about my medical history. I told one person, my best friend at the time and for a while, he was the only one who knew. Eventually, I told my other friends and everyone was supportive, though I don’t think they fully understood Lupus and how it was destroying my body. I transferred schools in January 2009, and joined a sorority that fall. I had a full year getting to know the wonderful women of Alpha Omicron Pi better and made friends that will last me a lifetime. I was more open to Lupus and how sick I was but I didn’t believe they comprehended what Lupus did. There were a few, of course, and then more realized once I had my kidney transplant in October 2010. I took off that semester, staying home to fully recover for the spring semester.

Upon return in January, I discovered 2 things:

  1. My closest friends got tested to be donors for me (Aw! You all know who you are and I am eternally grateful), so they understood the facts about transplants. They treated me gently and had patience during recovery.
  2. Those who weren’t as close didn’t know how to react. It seemed as if they weren’t sure whether to act like nothing happened, or to be completely guarded. Either way was fine, I knew how the position they were in with their confusion.


My dad always told me if I could count my friends on one hand I would be in good shape. The friends I could always count on and who would do anything for me. I laughed when I was younger, but now it makes sense. These friends I have are family.


I firmly believe that unless you have Lupus you will never understand. How could anybody else feel our joints sticking together or the flash-fevers? The overwhelming exhaustion is too difficult to explain. But how can we understand what those who love us feel?

Our family, friends and significant others make the greatest attempts to be sympathetic to our needs. Evan, my boyfriend (who happens to be a paramedic), can comprehend the symptoms. He can hold on my hand during a blood test, rub my back when it hurts and make me tea when I feel blue and that’s all I would ever need from him- just to know he’s there and supportive of me. My parents can hurt emotionally from going to countless doctor appointments. And you know, I can’t even begin to understand how painful that must be for them. Watching someone you love suffer. So who has it worse? Us, as the Lupus patient or the ones we love? Both. We all struggle with this disease. It affects all of us. We just all have to be loyal and caring to each other.

 We are the support system. 


Lupus and Antibiotics

At the end of June I had all four of my wisdom teeth pulled. In the first appointment I had with the oral surgeon, we discussed the Lupus issue and the complications of having the disease with surgery in the mouth. We decided an antibiotic for after would be wise.

I’m allergic to penicillin. In fact, all medicine that ends with “illin” and is related to penicillin (even if it’s a distant cousin) gives me Lupus-like symptoms. So, the doc prescribed Clindamycin, which is a drug that is given to people who are allergic to Penicillin.

Surgery went great, I was completely under anesthesia so I don’t remember a thing. I’m released and sent home a few hours later with ice bags on my face. Later that night, I force down some chocolate pudding and drink some Gatorade. I was hurting, my jaw very sore, but it wasn’t unbearable. I guess the pain meds worked.

Then, around 5pm, my neck is itchy. My scalp follows shortly after. When I looked in the mirror there was a small rash under my neck that led up under my hair. I decided to shower, thinking it was residue from the OR. I also put a call in to the surgeon. He assured me it wasn’t a reaction to the antibiotic so I continued taking it.

Skip ahead three days and I’m in the ER. Although, my mouth wasn’t hurting, I had a head to toe rash, swelling in my face and a constant fever of 104. I ended up staying in the hospital for four days with the same fever that only went down with Tylenol and a very itchy rash.

For all of you that don’t know what it’s like to be in the hospital, let me explain. The last time they checked on me was around midnight. Then, the docs did their rounds starting at 7am. (I was lucky enough to have my boyfriend stay with me overnight and most of the time during the day, until he had to work/shower. Thanks, Evan!) Anyway, every day they poked my already barely-there veins and drew blood, checked my temp, blood pressure, temp, heart rate and oxygen levels. They did this around 8am (after I had already fallen back asleep) and then again around 11 and so on… Total pain! My kidney function numbers sky-rocketed but Lupus remained quiet. How? No idea, but thank God it did.

I saw my nephrologist, my rheumatologist, an internist, a dermatologist and an infectiousness disease doctor. Alright, let me just say, I had enough of that after the second day. Aside from wanting to itch my skin off my body, I felt fine. It was just an allergic reaction, however, I understand the need to be cautious. Again, just a pain.

When I was finally released and home in my own bed, my fever subsided as the rash dissolved. My skin peeled from being so dry and it took a two weeks before I could use any products on my body to help.

All in all, quite the dramatic scenario for what was only supposed to be my wisdom teeth. Damn, body, you go all out when you’re unhappy. From now on, whenever I have to take an antibiotic, it will be much more researched.

Does this happen to any of you? Does your Lupus react? Does your body? PLEASE let me know!


We are One


If there is one thing I’ve learned through the S.L.E. Lupus Foundation, it is we are not alone. (Though, honestly, I feel like Lupus is a lonely disease, since we all battle it differently). This picture, which was created from words submitted by lupus patients on the S.L.E. Lupus Foundation Facebook page, is powerful, full of life. We are one. A unity. The words prove it.

I wasn’t surprised to see the biggest words as negative. Expected as usual, of course because the reality is, Lupus sucks. It’s painful, exhausting, overwhelming and mysterious. But it is so much more. Why? Because it is us. We are together in this. We are courageous! We are hopeful and persistent! Blessed and strong and no, we will not give up.

Inspiring. Imagine if we can all change our perspectives and encourage each other. I’m not saying it’s all going to be positive and sure, we will break down occasionally. There’s nothing wrong with that- as long as it doesn’t overpower us.

Stay empowered!

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Lupus Awareness Month!

Happy Lupus Awareness Month!

I’m challenging you this month. That’s right- a challenge. Up for it?

Bring your A game in this photo contest for the month of May.


A picture of you or you and a group (include your pet if you want) raising
lupus awareness! Dress up! Be silly! Have a lemonade stand! Be that person
waving a sign on the side of the road! Have fun with it!
Add a little blurb about what you did, if you raised money and who is in the
picture with you! Make it fun! Keep it real! (No lying, please!)


No lying! Please don’t say you raised a certain amount of money and didn’t
do anything (cheaters aren’t fun!)

Don’t say you did and then didn’t. That’s not fair to other contestants

If you do raise money- send the check to the SLE foundation with the
memo: Lupus May awareness challenge

What to do:

Email the picture and blurb before May 30th! The winner will be
announced on Thursday, June 5th!

The winner’s photo will be on the SLE Facebook website and there will be a prize! 

Good Luck! Have fun!

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Lupus in the Spring

“April showers bring May flowers,” we’ve all heard this saying, I’m assuming. Today is the first day of spring (well, concerning the weather at least) and I am SO ready for it. I am done with the cold weather and what felt like constant snow. Enough with the storms and bring on the warmer weather! I’m ready for my pink pastel jeans and light spring jackets!

I have always felt like spring is a time of rebirth and new life. The flowers begin to pop, the color of the trees comes back and everything smells fresh. I even heard birds outside my window this morning. There are joggers along the road and people planting in the community garden.

I finally feel like I can take a breath of fresh air.

But, with that fresh air comes a burst of pollen. Allergies! I don’t even have allergies- I don’t sneeze, or cough. My eyes don’t water or itch but every April for about a week I get the sniffles. I’m just waiting for it to happen.

With most things, I have to be careful with medicine I take. Who has allergies and Lupus and what do you do?

More importantly, how do you react to spring? What effect does it have on you?