Tuesday, June 21, 2016

Being a Mom with Lupus


Being a mom is wonderful, fulfilling, and if you're a mom then you also know that it's tiring for the average mom nevermind a mom with Lupus.  Each day, I have to take breaks to make sure I rest enough to be able to keep up with everything that needs to be done.  My joints hurt, and I have the typical Lupus pains. However the hardest thing for me is worrying about the future. I want to be here for my son forever if I can!  I do my best not to dwell on it, but being a mom with Lupus is a challenge and I just wanted to let you know that if you're a mom with Lupus out there reading this right now, I can relate to you.  I get it.  Please reach out to me if you need someone to talk to. Together we can live with lupus and thrive! :) 
Here's a blog post on the topic that I think is excellent...
and this one is great too!

xoxo Nikki

Friday, June 17, 2016

Follow our Facebook Page!

I'm late to the game on this, but we have a Facebook page!  Click on the link below to follow on Facebook.  The facebook address is @followlivinglifewithlupus 

I hope you'll like the page, share it with others who have lupus, and use it as a way to connect and communicate.  I hope to connect with all of you! xoxo Nikki

Thursday, June 16, 2016

Lupus News! Anti-interferon antibody - anifrolumab

I love sharing positive news about lupus drugs, trials, or advancements in the treatment of the disease!  Today's news is about the anti-interferon antibody, anifrolumab that has been shown to dramatically reduce disease activity in extrarenal systemic lupus.  Here's some info from the article....

LONDON, United Kingdom — After years of clinical trial failures, an anti-interferon antibody, anifrolumab, has been shown to dramatically reduce disease activity in extrarenal systemic lupus erythematosus.
In a large phase 2 trial, "we saw consistent, good results with anifrolumab across multiple measures of disease activity," said Richard Furie, MD, chief of rheumatology at Northwell Health in Long Island, New York. "I think these results give us more than hope."
"There has been failure after failure after failure in terms of new clinical trials, not just in extrarenal lupus, but also in lupus nephritis," Dr Furie told Medscape Medical News. "There is a great need for safer therapies, for better therapies, and for targeted therapies. And now we have these phase 2 study results that are very robust."
Click here to read the rest of the article. 

Monday, June 13, 2016

Time Management Tips for Living Life with Lupus


Living with Lupus is no easy task.  One of the biggest challenges I face is balancing the fatigue with everything in my life that needs to get done.  I really love the AdvoCare Spark drink for giving me an extra boost, but even more important than that is learning how to plan my days so that I can have full, but not overwhelming days.  I am not perfect by any means, and I don't have it all figured out.  Like you, I'm learning as I go.  I would welcome any suggestions or comments about what has worked for you, or what you're struggling with.  I really want this to be a forum for conversation.  We are all in this together.  Let's help each other live fuller lives!  Here are some things that have been working for me...

1. Forcing myself to wake up a little earlier than everyone else.
I'm still a work in progress on this.  Some days I do well, some days I don't.  But the days I do, I love it.  I love the quiet time and having some time to myself before the day starts. I use that time to do the work that needs to be done, get myself showered & dressed (I am working on using that time to actually get a workout in, but I haven't been that motivated lately ;)) and to prepare myself mentally for the day (prayer, quiet time).  Sometimes it doesn't always happen though, so on those days I believe in...


Whether you get up early or not, make sure when you get up that you have a plan for the day and you get started right away. 


2. Learn to Say No 


This one is by far the hardest for me.  I am a yes person.  I like helping people, being around people, and having everyone happy.  However, with lupus I've been forced to learn that I have a limited amount of energy each day and I need to prioritize, which means saying no sometimes.  It's not a bad thing, it just means knowing your limits.  I've also been working on just saying no without a big explanation.  It's really okay to just say "thank you for the invite, but I can't make it that day" and leave it at that, or find a time to schedule in something that works for you.   If you're too tired at night for a girls night, suggest a lunchtime get together on a day you can rest after.  Don't be afraid to suggest what's best for you and not feel badly about it.   Learning to say no also frees up time for the things that are your priorities, and that will greatly help with time management.

3. Delegate! 
This one is also hard for me!  I have found that I can manage my time more efficiently when I focus on the things that are important to me and delegate out the remainder of the items.  This could be as simple as asking your spouse to help with more household chores,  or having your kids handle some additional household responsibilities.  At work, it may mean passing on more responsibility to other people on your team.  I'm a Realtor and I used to own my own real estate company, but when I had my son, I realized that it was more important to me to spend time with my son than to run a company.  However, real estate was still a passion of mine, so I decided to affiliate with a larger company so that I could delegate things like administrative work without having to manage the whole company.  For me, it's a win-win. I get to properly service my clients and spend time with my son.  Also, don't be afraid to ask friends for help.  If you have kids, it could mean having a friend take your kids for a while so you can get some rest or catch up on work or chores.  There's another Lupus blogger who has a babysitter come a few hours a day so she can get a nap, as that's been key to maintaining her health.  If you have the money in your budget, hiring a cleaning person even to do a deep clean once a month can be a huge help too.  Find people to help you, let them help you, and be appreciative! 

4. Pick your Top 3 Things for the Day


You really do have to be kind to yourself.  Don't over-schedule yourself.  Depending on your health, pick 1 to 3 things that you really want to do each day and focus on those.  Don't make a to-do list of 20 things and be disappointed when you don't complete them all.  Be realistic, and be kind to yourself! I keep a to-do list, but if I don't do it that day, I just move it over to the list for tomorrow and keep chipping away at it!  

And the most important of all...

5. Don't stress. Let the past go.  Tomorrow is a new day!



If today wasn't what you expected, let it go and start over tomorrow.  None of us know how many days we will be blessed with, so if you don't get it all done today, get a good night's rest and start over tomorrow.  Enjoy your days.  I know it's easy to get bogged down with the "what ifs" of Lupus, but we can't let the disease control us.  We need to enjoy our days.  Live our lives.  Love our lives.  This is the hand we are dealt, and I truly believe we can live fully with Lupus even when it's hard to do!

I'd love to hear your tips for managing your time while maintaining the best health possible!

xoxo Nikki


Monday, June 6, 2016

Dream Home Ideas

Do you ever dream about what your ideal house would look like?  
I'm a real estate broker, so I think about this a lot.  In the area I live in, it's mostly Colonial style homes with a Pottery Barn feel, which is nice, but not my style.  I absolutely love a cute little country house.  Modern Farmhouse would probably best describe my favorite style.  Oddly enough, our current house cannot be any more opposite than that!  Our home now is a modern style ranch from the 1960's that was originally more mid-century in style but is decorated in an eclectic mix of whatever we have thrown together or collected over the years.  If I could build or buy new, and start from scratch, this is the home I would design.  What would your home look like?  I love Pinning things on Pinterest, especially when I'm a little stressed and need a break.  Here's my dream home Pinterest board.  Feel free to follow me and add your own! 




Share your favorites in the comments below :)
xoxo Nikki