My Lupus Team: The Social Network for Lupus Patients!

Monday, June 1, 2015

I am so honored that featured one of my blog posts on their site!  Check that out here!

If you have Lupus, definitely sign up for an account at where you'll be able to chat with other people who are also fighting lupus.  It's a hard disease and the more people you know who you can share your experience with, the more people you'll help and the more help you'll receive in return!

And if you join, please add me to your team!

A big thanks to everyone at My Lupus Team for featuring my blog post! :)

Products that make living life with Lupus a little easier!

Monday, March 9, 2015

Living with Lupus is hard.  Personally, I experience severe joint pain that makes doing simple things like opening a jar or a water bottle nearly impossible on some days.  I also experience swelling, stomach pain and headaches.   I've found a few products that have helped me in my day to day life and I wanted to share them with you.

1. Babyliss ProNano Titanium Rotating Hot Air Brush.   If you have lupus, then you know that drying your hair is one of the hardest things you'll do each day.  Something that most women take for granted.  I can hold the hair dryer, but the combination of holding the dryer AND a round brush is just too much.  My solution is that I dry my hair about 80 to 90% of the way with the regular hair dryer, but not paying any attention to style.  My hair is wavy, so I cannot leave it like that.  Then I use this Babyliss Rotating Brush to style it.  The buttons make it so easy and it doesn't hurt my hands at all.  It leaves my hair smooth and styled and it doesn't take any energy to use.  There's a small learning curve to get used to the buttons, but after 2 or 3 uses I felt really comfortable with it.  I highly recommend this! I also cut my hair to shoulder length, which cuts down on drying and styling time.  

2. Walter Drake Jar Pop Opener.  Most of the time my boyfriend is here to open jars, bottles, etc for me.  When he's not, I use this jar opener to open any jars.  It's a lifesaver.  It's also really cheap and a must-buy.  It's helpful even for people who don't have lupus.  Now if I could just find something to make opening water bottles easier...any recommendations, please post in the comments section!

3. EmuBliss Banish My Pain Joint Lotion.  I don't like using products with chemicals, and I'm a big fan of natural pain relief.  I go to acupuncture, and in addition I use this EmuBliss lotion.  It really makes a difference in the pain in my hands, knees and ankles. 

4. Hue UltraWide Waistband Leggings.  Some days my stomach hurts too badly to wear regular pants, and on those days, I throw on these leggings with a tunic and call it a day.  They are the best leggings...thick, don't slip down and just fit perfectly. 

5. Sara Gorman Pill Case.   Every day, two times a day, I take Plaquenil, Vitamin D, OmegaPlex, Vitamin B12, and CorePlex MultiVitamin. In order to keep it all organized, I use this cute pill case.  No need to carry around an old grandma style plastic case!  Plus, Sara has lupus and you'll be supporting a fellow lupus survivor/fighter and mom of young kids! 

6. Advocare Spark Drink.  Lupus fatigue is no joke.  I drink Advocare Spark twice a day to give me some extra energy.  It really works!

If you have any products that make your life easier with lupus, please share them below :)

xoxo Nikki

Save the Date: Tues Dec 2nd at 5:30pm Lupus & General Health Chat on Facebook!!

Wednesday, November 26, 2014

On Tuesday December 2nd, the Hospital for Special Surgery in New York and the S.L.E. Lupus Foundation will partner up for chat on Lupus & General Health, which will be hosted on the HSS Facebook page.  

The chat will take place from 5:30pm to 6:30pm Eastern Time and the audience will be able to ask their panel of experts (rheumatologists, dermatologist, and social workers) questions in relation to lupus.

This is a great opportunity to have questions answered, and to learn more about Lupus.  

Please share this with anyone you know who may be interested! 

Managing the emotions of Lupus

Tuesday, October 14, 2014

I remember the day I was diagnosed with Lupus.  It was January 3rd 2013.  A new year had just started.  I love a new year...just the newness (is that a word?) of it all.  I was the geeky kid in school who LOVED getting a new notebook for the new school year.  I've just always loved being able to put the past year behind me and start with a fresh outlook.  So needless to say, when 2013 started out just 3 days in with the diagnosis of lupus, I was devastated.   I felt like my whole life was falling apart around me.  Would I live or die?  Would treatment be scary and painful?  Would I lose my hair? What would happen to me?  Would I ever have children?  Would a man love me, with something like lupus?  Some of these sound like irrational and stupid questions for the non-lupus patient...but if you've been diagnosed, then you know that these thoughts come rushing in your head.  It's easy to get down and depressed.  

Like any normal person in 2013, the first thing I did was rush to the internet....where I was met with horror story after horror story.  I got more upset, thinking "what's going to happen to me?!".  After talking to my doctor and a doctor that is also a friend, I realized that I was not very likely to die from Lupus...and that if I kept a positive attitude and took care of my body, then I could really manage this disease.  

I prayed a lot about it, and just knew in my heart that attitude would be everything in managing lupus. I truly believe you have to manage the emotions of lupus, in order to manage the disease of lupus! 

I felt compelled to start a blog, to share my story, but also to give other newly diagnosed women hope.  I was sad that there were only negative lupus stories online.  Stories of women who were so down and discouraged by the disease...and I do understand why, it's very hard!  But I wanted to be different.  Since then, I've been contacted by so many amazing women who were in my shoes!  Just being able to share my testimony for how positive thoughts and also taking care of my body has helped has been amazing.  I've made great friendships, and if I've been able to help even one woman through it, then it's all worth it.

I think back, almost 2 years ago, to where I was emotionally at the point of my diagnosis compared to where I am now.  I can tell you, that I am in such a better place!  Each day, I start off with some meditation and focusing my energy on what I want to accomplish for the day. Sounds cheesy, but it helps to have a plan!  When my joints ache and I can't walk too well, having a quiet moment where I can just reflect helps my whole body relax.  Throughout the day, I try to remind myself "The days are long but the years are short" so that I focus on ALL the happiness in my life, not the day to day aches and pains.

Yes, I've had times over the last few years when I've lost a lot of my hair, or the lupus gets bad and I can't walk very well.  I've cried a lot of tears.  But I've also had so much joy.  I was able to have my son, after being told I would likely never have children.  I run & workout...after being told I "may never be able to run, but at least you can walk".  I eat healthy and take supplements, because I know that God has given me only one body and His intention was for me to have this body, lupus and all, so I need to be thankful for it and honor it.  

If you're newly diagnosed with lupus, take a deep breath.  It will be okay.  You will be scared at times, and that's okay.  It'll be hard physically at times.  Taking new medicines that have some side effects can also be scary and hard.  You'll take it day by day and you'll not only make it through, but you'll find a strength inside yourself that you never knew you had.

And if you think you may have symptoms of Lupus, please ask your doctor to test you.  I went through over 10 years of symptoms before I had the correct diagnosis.  Lupus can present itself like many common illnesses and doctors don't always know to test you.  For example, I don't have skin issues from lupus like many people do. I've never had a butterfly rash on my face.  I "look perfectly healthy" from the outside.  My lupus presents itself primarily in my joints, which makes things like opening a can or walking across the room much more difficult than normal.  Other people have lupus that affects their organs, or that affects their skin.  Here's a helpful chart with symptoms, but please ask your doctor if you think you might have Lupus.
Please reach out with questions or feel free to comment below and share your story! 

Lupus & Pregnancy...My Experience

Monday, September 8, 2014

My son is 6 weeks old, which means that this post is very overdue!  

When I found out I was pregnant, I searched the internet for information on Lupus and Pregnancy.  One of my favorite lupus bloggers references her pregnancy, but aside from her site and some clinical sites, there wasn't much information on how lupus impacts pregnancy.  

What I learned, is that because lupus is different for each person and pregnancy is different for each person, there's no way to truly predict how lupus will affect your pregnancy.   The best thing you can do is to talk with your rheumatologist to make sure that your body is as prepared as possible before getting pregnant.  This is not something I was able to do, as our pregnancy was a surprise.  I was lucky enough though that at the time we got pregnant my lupus was well managed and under control.   At that time, I also was not showing signs of having the antipholipid antibodies, which can cause more complications during pregnancy.

In an effort to help other women who may have lupus and either be pregnant or considering pregnancy, here is my story...

I never thought I would ever be pregnant.  My ex-husband and I tried for a while when we were married to have a baby, with no success.  After we divorced, I was diagnosed with lupus.  I started taking Plaquenil, a drug that works wonderfully for lupus patients like myself..but in the back of my mind I was scared about how having lupus and now taking medicine might impact my chances to have a baby someday.  I decided that I wanted to freeze my eggs, basically as 'insurance' that I'd have options in the future. I met with a fertility doctor at one of the best hospitals in the city. The doctor ran a bunch of tests and told me that due to various reasons, the chance I would be able to have a baby of my own was slim to none.  I was very upset, but I decided to focus on my career and the wonderful blessings life had already given me.  I still couldn't give up hope of someday being a mother.  I just knew in my heart, that somehow, someday, it would happen.  Whether that was as a stepmom, or through adoption, or through a miracle, I just knew God would bless me with children...somehow.

What I didn't know at that time is how my life would play out, or that my wonderful boyfriend and I would end up having our own miracle baby!  

When we found out I was pregnant, we were obviously very surprised, but also we felt a sense of calm and peace that everything was meant to be and would work out.  Our life was (and is!) complicated, but we focus on having faith that things will fall into place.   Our first concern was if my body was strong enough to carry the baby, and if the medicine I take would affect the baby.  We met with a wonderful doctor in Boston who specializes in OBGYN for lupus patients.  She truly set our minds at ease.  She did an ultrasound, and sure enough, our little bean was wiggling away with a very strong heartbeat.   With lupus, the risk of miscarriage is a bit higher than average so we decided to wait until we were a lot further along to share our news with anyone.  Most people wait until the 1st trimester is over, but we waited as long as we possibly could.  The thought of having to tell people that our baby didn't make it was just too much for me to imagine. Thankfully that didn't happen, and I successfully carried our son to 37 weeks.  Yes, 3 weeks early, but full term none the less, and he is just perfect!

The process of getting to 37 weeks was NOT easy!  I had hyperemesis gravadarium until 27 weeks, which means I vomited upwards of 15 to 20 times a day.  I got so used to being sick that I figured out how to go about my daily life and just be sick during it all.  It wasn't easy, but I just survived it.  Thankfully my boyfriend was amazingly supportive (having support is SO important) and helped me through the hard times.  I was hospitalized at 16 weeks pregnant for 4 days due to severe dehydration from being sick so much.  My resting heart rate had skyrocketed and I had to have a CT scan to rule out a pulmonary embolism.  Yup, a blood clot in the lung.  Talk about scary....especially considering I had to risk my baby's safety regarding exposure to the radiation.  It was such a scary moment.  Luckily I did not have a blood clot and my heart rate went down a bit after 3 days of IV fluids.  I had to see a cardiologist for the remainder of my pregnancy, just to be safe.  I am not sure if it was lupus related or not, but my heart rate remained high and I was not allowed to exercise and was on modified bed rest almost my entire pregnancy.  I also had a heart murmur (pregnancy related), and lots of swelling that ended up being preeclampsia. 

At the end of my pregnancy, my blood pressure started creeping up (it's normally on the low end of normal, so this was scary for me), and by 35 weeks I had to monitor my blood pressure at home on a daily basis. On Monday July 21st, I had a splitting headache and my vision wasn't quite right.  I stayed home from work, took a nap and some Tylenol, and when I woke up and my head still hurt I knew something was wrong.  I checked my blood pressure and it was high.  I called the doctor and they had me go in.   I went in at 5pm Monday night and they told me "you have severe preeclampsia and you're not leaving without a baby".  I started crying, because I was only 37 weeks.  I called my boyfriend who rushed in to be with me.  They started the induction process Monday night.  I had our son on Friday July 25th at 1:36pm.  Yes, you read that right...FIVE days later!  And yes, it was as hard and scary and challenging as it sounds.  I had 4 days of a magnesium drip to prevent a seizure from the preeclampsia and could not be left alone...thankfully my boyfriend was there with me.  Every single drug they used to try to induce me failed.  On Thursday, they gave me an epidural (which didn't work and only numbed part of my body) and manually dilated me and broke my water.  Still nothing.  Friday morning I woke up so exhausted.  I wasn't allowed to eat anything except clear fluids since that Monday and wasn't allowed to get out of bed.  I finally said "I don't know how much more I can do".   I prayed a lot that week, praying our son would make it through.  My doctor said "take a nap, and we'll decide around noon if we'll keep trying for a natural birth or if we'll proceed with a c-section".  We really wanted a natural birth, because our son was 3 weeks early and they felt strongly that he would need a natural delivery to get any fluid out of his lungs, because boys who are born early can have under developed lungs, especially if they are born via c-section.  

At noon I woke up from my nap sweating and feverish.  I had a fever and our son's heart rate was dropping. Before I knew it, a whole team of doctors were rushing in and said they needed to do an emergency c-section because they thought I had an infection.  It was a blur and crazy, but I remember being rushed into the operating room and the doctors telling me that I could either attempt to have enough drugs via my epidural to numb me, or go under general anesthesia, but they didn't have time for a spinal block.  After 5 days of medicine, I wasn't thinking straight and I was so focused on wanting to see my son born that I opted for the epidural drugs.  Well, they didn't work very well.  I saw our son be born, and my boyfriend holding him, and then I felt intense pain.  The epidural medicine wasn't strong enough and the doctors had to stop the surgery and put me under general anesthesia to complete the surgery.   I remember seeing my son, seeing my boyfriend and then waking up in the recovery room having no idea what happened.  It was very frightening, but I'm so happy and blessed that I saw our son being born and saw my boyfriend holding him.  It was the best memory and made the whole long week and scary c-section 100% worth it.  

When I woke up I found out that our son did have fluid in his lungs from my preeclampsia and that he was in the NICU.  They wheeled me in the stretcher right into the NICU so I could see him.  He was just so beautiful and perfect.  And huge...8 pounds!  The biggest baby in the NICU!  The doctors all assured us that he would be just fine, and that boys born around 37 weeks, even though it's technically considered full term, can have problems with breathing because they really need those last few weeks to get their lungs mature.  He had some assistance in the NICU and after 11 very long and hard days, he was able to come home.  The doctors feel confident he will have no residual problems as a result of my lupus, the birthing process, or his time in the NICU.  His heart checked out perfectly (babies of Lupus patients can have heart problems, but his EKG was perfect), and everything about him is just gorgeous...he looks like the Gerber baby :)  I couldn't have imagined a more perfect baby boy. 

He is now 6 weeks old and achieving and exceeding all of the developmental milestones.  He is just perfect on the height and weight charts according to his pediatrician, who told us he is a "gorgeous baby".   I am a proud mama, and I know that this road was so hard, but it was worth every second.

I look at my son and I thank God for His gift.  We are so very blessed that God trusts us to be his parents.  

While my lupus has been challenging the last couple weeks (it can flare up a bit postpartum), we are doing great and I am focusing on my health and our baby and our family.  I don't know if the hyperemesis, or the increased heart rate, or the preeclampsia, or even the failed induction have anything to do with lupus or not.  I'd love to hear your stories of lupus and pregnancy if you'd like to share them below.  What I do know, is that when I look at his beautiful blue eyes, his curly blonde hair, his cute little button nose, or his chubby little kissable cheeks, I know that God is good and miracles really do happen.

**We don't believe in posting pictures of our son (or my boyfriends older kids) on the internet, so you'll have to trust me when I tell you that he's a cutie pie!