Thursday, September 15, 2016

CBD Oil for Lupus symptoms & helping with negative drug side effects

Before I start this post, I just want to say that I was never one to experiment with drugs and I am not generally a big believer of "natural cures" for serious things like Lupus.  It makes me so mad when people tell me I can "cure my Lupus by trying X, Y, or Z treatment".  I want to scream "if it was that easy, I would have been cured already!!!".   So, trying CBD oil for Lupus wasn't something I ever thought I would do.  

This is NOT a sponsored post.  I am not receiving any compensation for writing it, and I was not provided any free product.

Here's how this all came about.  My doctor actually suggested I give this a try.  It's legal in all 50 states, it does NOT make you high or cause any mental changes at all.  The part of the marijuana plant that makes you high is not in this oil.  This is Cannabidiol CBD oil that has many health benefits.  My doctor suggested I take it to help ease the side effects of the Lupus drug I take, Plaquenil.  I get horrible headaches daily, and up until now I was taking 2 Tylenol every single day because I cannot take NSAIDs or Aspirin.  I know how terrible Tylenol is for your liver, so I was looking for some solutions.   I've been taking 2 drops of CBD oil, twice a day now for 3 weeks and I can say that I've only had to take Tylenol once during that time!  A pretty amazing improvement!

For me, taking it to help with the side effects of the Plaquenil alone is worth it, but I also like that it can reduce the risk of seizures, which can be elevated in people with Lupus.  My mom (who I am positive also had Lupus) also got seizures, so I'm hoping not to follow in her footsteps in that respect.
In addition, it seems there are many other health benefits and I haven't been able to find too many negative side effects to worry about.

Once I knew it was something I wanted to try, I did some research on what brand to buy.  Friends recommended other brands, but I decided to go with the brand my doctor recommends,  I got the #42 bottle of oil and take 2 drops under my tongue twice a day.  It's on sale right now for about $69 per bottle but usually runs around $85.  It lasts a really long time though, because you're using literally only drops of it a day.  

I am always skeptical of these things, but I have been really happy with my results using CBD Oil to help with my Lupus symptoms.  I do feel I have increased energy, less anxiety, and the headaches are SO much better.  

Of course, ask your doctor before you try anything, but if you do give it a try, leave a comment below and let me know about your own experience!

xo Nikki

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